D1.1 - UK Health Security Agency (UKHSA) Single Data Sharing Agreement

The UK Health Security Agency (UKHSA) is the national expert agency responsible for protecting the nation’s health and a category 1 under the Civil Contingencies Act 2004 (Category 1 responders are those organisations at the core of emergency responses). It is an executive agency of the Department of Health and Social Care (DHSC) and fulfils the statutory health protection duties of the Secretary of State as set out in Section 2A of the NHS Act 2006, as inserted by Section 11 of the Health and Social Care Act 2012. UKHSA was established on 1 April 2021 as part of the government’s plan to transform the UK public health system (www.gov.uk/government/publications/transforming-the-public-health-system/transforming-the-public-health-system-reforming-the-public-health-system-for-the-challenges-of-our-times) and become fully operational on 1 October 2021. It combines the health protection activities previously undertaken by Public Health England (PHE) with all of the activities of NHS Test and Trace and the Joint Biosecurity Centre (JBC). UKHSA’s priorities are set out in its annual remit letter from the government.

UKHSA is responsible for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from communicable diseases and other threats to public health. It is a direct provider of health protection services as well as a processor of data and information for public health purposes that do not involve direct interaction with patients and the public. The successful fulfilment of its remit depends on its ability to process data on the health of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data UKHSA uses it collects directly, but it also depends on timely access to other sources of health data, such as the healthcare activity data collected at a national level by NHS England. This Data Sharing Agreement (DSA) supports the statutory remit of UKHSA by setting out the legal basis and public health justification for sharing specified data sets by NHS England.

UKHSA commits to implement and comply with internal governance controls to ensure that access to the data it processes under this DSA is managed in accordance with data protection legislation, national codes of practice (including the Caldicott principles), national information standards, national assurance frameworks (including the Data Security and Protection Toolkit) and appropriate best practice guidance.

Identifying data is required to enable linkage to other data sets held by UKHSA, linked data is then pseudonymised before analysis. Identifying data is not used for research purposes. There are dedicated teams within UKHSA who work on projects associated with research and separate teams who work on projects for statutory purposes (as per this DSA). The research teams are aware they must apply for data use under a separate DSA to use NHS England data for research projects.

LEGAL BASIS

The legal bases for UKHSA to process each of the datasets detailed in this DSA vary according to the purpose and may include:

a) UK GDPR Article 6(1)(e) processing is necessary for the performance of a task carried out in the public interest

b) UK GDPR Article 9(2)(i) processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health

c) Data Protection Act Schedule 1 Part 1 (2) health or social care purposes

d) Data Protection Act Schedule 1 Part 1 (3) public health

e) Data Protection Act Schedule 1 Part 1 (4) research

f) Data Protection Act Schedule 1 Part 2 (6) statutory etc. and government purposes

g) Data Protection Act Schedule 1 Part 2 (19) processing for archiving, research and statistical purposes

For most UKHSA purposes, UK GDPR Articles 6(1)(e) and 9(2)(i) and Data Protection Act Schedule 1 Part 1 (3) public health apply.

UKHSA further has approval from the Secretary of State for Health and Social Care to process confidential patient information for a range of health protection purposes under Section 60 of the Health and Social Care Act 2001, as re-enacted by Section 251 of the National Health Service Act 2006, and Regulation 3 of the associated Health Service (Control of Patient Information) Regulations 2002. The purposes permitted under Regulation 3 include:

3(1)(a) diagnosing communicable diseases and other risks to public health

3(1)(b) recognising trends in such diseases and risks

3(1)(c) controlling and preventing the spread of such diseases and risks

3(1)(d) monitoring and managing:

(i) outbreaks of communicable disease

(ii) incidents of exposure to communicable disease

(iii) the delivery, efficacy and safety of immunisation programmes

(iv) adverse reactions to vaccines and medicines

(v) risks of infection acquired from food or the environment (including water supplies)

(vi) the giving of information to persons about the diagnosis of communicable disease and risks of acquiring such disease

Regulation 7(2) of the associated Health Service (Control of Patient Information) Regulations 2002 stipulates that anyone processing confidential patient information under COPI must be a health professional or person who in the circumstances owes a duty of confidentiality which is equivalent to that which would arise if that person were a health professional.

To note, approvals to process confidential patient information under Regulation 3, excepting Regulation 3(4), are not subject to advice from the Health Research Authority’s Confidentiality Advisory Group.

NHS England and UKHSA statutory remits: This DSA recognises the remit of NHS England as set out in the Health and Social Care Act 2012 and the Care Act 2014, and of UKHSA as set out in its annual remit letter from the government (www.gov.uk/government/publications/ukhsa-priorities-in-2024-to-2025). It also recognises the specific legal gateways provided to UKHSA under Section 251 of the NHS Act 2006 and Regulation 3 of the Health Service (Control of Patient Information) Regulations 2002 to process confidential patient information. The patient data processed by UKHSA under Regulation 3 has also been granted specific exemption from national data opt outs by the DHSC.

UKHSA is responsible for discharging the statutory health improvement duties of the Secretary of State for Health and Social Care that were previously fulfilled by PHE. In recognition of this organisational succession, this DSA has been amended to change the organisation to UKHSA. The agreement has been amended to enable UKHSA to link updated extracts for the data sets previously disseminated to PHE and which transferred to UKHSA control when PHE closed at the end of September 2021, in order to ensure the continuity of the nationally-important health protection services provided by UKHSA.

JUSTIFICATION FOR REQUESTING CONFIDENTIAL PATIENT INFORMATION

Several data sets containing confidential patient information for the whole of the population of England are disseminated to UKHSA by NHS England under this DSA.

Wherever possible, UKHSA processes data in aggregate or anonymous forms. Where these types of data are not available or not suitable for the end purpose, data sets that have been pseudonymised through the removal of direct patient identifiers such as name, date of birth and NHS Number are used. However, to fulfil many of its health protection responsibilities, UKHSA needs to process confidential patient information that directly identifies individuals. The justifications for it using data in this form are either to enable direct contact with individuals, for example to provide them with urgent public health advice, or to link together different sources of data to better understand the impacts of infectious diseases and other threats on individual and population health.

The confidential patient information provided by NHS England is typically linked to other sources of health protection information that UKHSA collects either directly from individuals, from the providers of health and care services, or from other organisations that support the health and care system in the UK, such as NHS Business Services Authority and the Office for National Statistics. The purpose of this linkage is to increase the completeness and value of these public health data sets to UKHSA in preventing, detecting, analysing and responding to infectious diseases and other threats to individual and population health.

The justification for UKHSA receiving whole population data sets from NHS England, such as the complete Emergency Care, Secondary Uses Service and Hospital Episode Statistics data sets for all patients attending hospitals in England, is to enable the timely and efficient linkage of information on the reasons for admission, the treatments received and patient outcomes to the data UKHSA holds on patients affected by infectious diseases and chemical, environmental and radiological threats to health. Health protection threats can often rapidly emerge and affect large numbers of people. For UKHSA to request access to hospital episodes and spells data specifically for the groups of individuals affected by separate health protection incidents would seriously affect its ability to rapidly assess the threat to individuals and the wider population, and to advise government, the NHS and other organisations on the appropriate response to protect public health.

PROCESSING ARRANGEMENTS AND CONTROLS

UKHSA is a new organisation and working towards integrating the previously separate data storage and processing systems of its sender organisations. While this work is underway, the data sets transferred by NHS England to UKHSA will variously be stored in one of the following secure data processing systems:

a) the UKHSA Data Lake service, which was previously used to receive the data sets disseminated to PHE

b) the UKHSA EDGE (Environment for Data Gathering and Engineering) service, which was previously used to receive the data sets disseminated to the JBC

c) the UKHSA EDAP (Enterprise Data and Analytics Platform), the new data management and analytics platform being built by UKHSA to replace EDGE and also end its use of the Data Lake

Throughout 2024 and 2025 UKHSA is progressively transferring over the processing of the data disseminated under this DSA from the Data Lake and EDGE services to EDAP. EDAP is an enterprise data management and analytics platform developed by UKHSA to provide a secure, centrally-managed service enabling controlled access to analytic environments and tools that minimise the need for UKHSA scientists, epidemiologists and analysts to directly access confidential patient information. The transition of UKHSA’s data processing activities to EDAP is a complex process that will necessitate a time-limited period during which duplicate copies of the historic data already disseminated by NHS England, as well as updated extracts of the disseminated data sets, will need to be hosted and flow into EDAP at the same time as they are held and received into the Data Lake and EDGE. UKHSA commits to minimising the duration of this period of parallel storage, receipt and processing of the data sets disseminated under this DSA by NHS England .

With specific regard to the Data Lake, this service is currently shared between UKHSA and the DHSC. The DHSC is responsible for the discharge of the statutory health improvement duties of the Secretary of State for Health and Social Care under Section 2B of the NHS Act 2006, as amended by Section 12 of the Health and Social Care Act 2012, that were previously fulfilled by PHE. Authorised DHSC staff are being provided with access to the data sets stored in the Data Lake which they have specific approval to process to ensure that there is no disruption to the continuity of nationally-important health improvement functions following the closure of PHE.

The Data Lake is a shared service but strong controls are in place to ensure that UKHSA and DHSC staff can only access the data sets that are covered by each organisations’ respective separate DSAs with NHS England. The Data Lake is hosted on the UKHSA information technology network, with day-to-day management of the service, including the receipt, basic verification/validation and loading of the data transferred by NHS England, undertaken by staff from DHSC. A memorandum of understanding has been agreed between UKHSA and DHSC setting out the arrangements and responsibilities for the management of the Data Lake service.

UKHSA has implemented the following governance controls for the Data Lake:

a) UKHSA staff can only access data in the Data Lake which is specifically covered by the UKHSA DSA with NHS England

b) UKHSA data stored in the Data Lake can only be processed for the purposes specified in the UKHSA DSA

c) UKHSA staff requests to access specific data sets stored in the Data Lake must be made in writing and name the staff for whom access is requested

d) The data access request process assesses the legal basis and the necessity and proportionality of the processing

e) Data access requests require the approval of the information asset owner and the UKHSA Caldicott Guardian or an authorised deputy, who will also ensure compliance with the Caldicott principles

f) Data Lake access is monitored to ensure that UKHSA staff only process the data sets they have approval to use

Additionally, the DHSC staff responsible for loading the extracts disseminated under the UKHSA DSA into the Data Lake are not authorised to process this data for any other purpose, are not permitted to copy or transfer the data to any other location not authorised by UKHSA, and are not permitted to provide access to this data to any DHSC staff or to UKHSA staff who do not have the required access permissions.

Comparable governance controls have been implemented by DHSC to manage the access of its staff to the Data Lake.

Other controls implemented by UKHSA to ensure the security and protection of data transferred by NHS England include, but are not limited to:

a) All data shared under this DSA is stored and processed in secure locations in England and Wales.

b) All UKHSA information assets have a named owner who is a director-level employee with responsibility for the overall management of the asset; a suite of corporate data security and protection policies and procedures is in place describing these responsibilities and ensuring that consistent standards are applied to managing the data held in these information assets; UKHSA information assets remain separate and are not joined or linked unless there is a legal basis and public health justification for UKHSA to do so

c) NHS England data is transferred to UKHSA using the NHS England Secure Electronic File Exchange (SEFT) service or Message Exchange for Social Care and Health (MESH) service and then stored in a secure locations on the UKHSA information technology network

DATA SHARING WITH THIRD PARTIES

The bulk of the outputs based on the processing of the data sets disseminated to UKHSA by NHS England are in the form of statistics, reports and guidance that describe the incidence, prevalence, trends, epidemiological characteristics and related information necessary to guide and support the public health actions needed to prevent and control infectious diseases and other threats to public health. Outputs published on the UKHSA website or without restriction elsewhere contain aggregate data and statistics only, with small numbers suppressed in accordance with NHS England and Office for National Statistics (ONS) guidance. No information that identifies individual patients is published by UKHSA.

For some public health purposes, the data disseminated by NHS England may be linked to other data sets controlled by UKHSA to generate reference public health data sets that are used for the surveillance and control of infectious diseases and other public health threats. Data from these linked reference data sets may be shared by UKHSA with third parties in the form of identifiable or de-personalised extracts (sub-licensing). Identifiable data is only shared with third parties that have a legal basis to process this form of data, and only the minimum necessary data is shared for the required purpose. All sharing of identifiable or de-personalised data by UKHSA is controlled under written data sharing agreements that contain appropriate data security and protection clauses, including retention and disposal clauses. UKHSA does not share with third parties any extracts of the data sets disseminated by NHS England that have not been linked to other public health data sets controlled by UKHSA, and where such linkage is essential for the work to be undertaken. Any requests to access the unlinked data sets, such as the unlinked hospitalisations data disseminated by NHS England, are referred to NHS England by UKHSA.

Any onwards transfer of data supplied to UKHSA by NHS England (unless agreed by NHS England to be derived data) will be subject to the same legal constraints that NHS England is subject to. These include the provisions in the Care Act 2014, which stipulate that data may only be disseminated for the purposes of providing health care or adult social care, or supporting the promotion of health.

The National Data Opt Out will upheld by the UK Health Security Agency (UKHSA) in line with national policy: https://www.gov.uk/government/publications/accessing-ukhsa-protected-data/approval-standards-and-guidelines-upholding-objections-under-the-national-data-opt-out”

UKHSA will publish and keep up to date a Data Access Approvals Register: https://www.gov.uk/government/publications/data-access-approvals-register

OTHER DATA SETS

The majority of the data sets disseminated to UKHSA by NHS England are ‘onboarded’ into the NHS England Data Access Service (DAS) system. In addition, the following data sets, are disseminated to UKHSA:

a) NHS 111 Pathways Data – a daily extract of pseudonymised telephony calls data to the NHS 111 service, from 2020/21 to latest available

b) NHS 111 Online Data Set – daily extract of pseudonymised contacts/enquiries data to the NHS 111 Online service, from 2013/14 M05 to latest available

PROCESSING OBJECTIVES

Specific information regarding the purposes for the processing, the method of processing and the outputs and benefits of the processing for each data set disseminated to UKHSA by NHS England is provided below.

Civil Registration (Deaths) Data Set, Covid-19 UK Antibody Testing Results (Pillar 3), Covid-19 UK Non-Hospital Antigen Testing Results (Pillar 2), NHS 111 Online, NHS 111 Pathways, and Secondary Uses Service Payment By Results (SUS-PBR) (identifiable)

PURPOSE 1 - COVID-19 response: The Civil Registration (Deaths) data set contains details of the cause of death and basic demographic information for deceased persons. The identifiable data provided by NHS England includes all deaths in England. The identifiable Pillar 2 Testing data set contains information on COVID-19 antigen swab testing conducted at drive-through test centres, mobile testing units, satellite test centres, home testing and care home testing. The identifiable Pillar 3 Testing data set contains information on COVID-19 antibody serology testing. The NHS Online and Pathways data contains information on the assessment, triage and onward referral of callers to the NHS 111 service. The identifiable SUS-PBR data contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for planned or urgent care.

UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious disease threats. The Civil Registration (Deaths), Pillar 2 and 3 Testing, NHS Pathways and SUS-PBR data is processed for purposes that support the UKHSA response to COVID-19, including monitoring, modelling, analysing, reporting and advising on the national, regional and local planning and response to the evolving pandemic.

The identifiable Civil Registration (Deaths), Pillar 2 and 3 Testing, and SUS-PBR data is linked to other public health data sets held by UKHSA, including but not limited to laboratory test results and viral genomic sequencing data, to create a COVID-19 reference surveillance and analysis data set. This reference data set is then depersonalised to protect patient confidentiality and used for surveillance, modelling, analysis and reporting to inform and guide the UKHSA, NHS and wider government response to COVID-19.

Electronic Prescribing and Medicines Administration (EPMA) Data Set (identifiable)

PURPOSE 1: Infectious disease surveillance and control, including the COVID-19 response: The EPMA data set contains information on medicines prescribed and administered to hospital patients in NHS Trusts in England. The identifiable EPMA data provided by NHS England is processed to support the fulfilment of UKHSA’s health protection remit from the government. This includes responsibility for contributing to the ongoing national response to the COVID-19 pandemic by monitoring medicine prescribing practices, particularly antimicrobials and immunomodulatory therapy, and assessing their effectiveness by analysing the impacts on the outcomes of hospital patients with COVID-19 (including those with a preceding, co-infection or secondary infection with an additional respiratory virus, bacterial or fungal pathogen) as well as on patients with infections other than SARS-CoV-2.

The identifiable EPMA is linked to other public health data sets held by UKHSA, including laboratory test results, viral genomic sequencing (to identify variants of concern or variants under investigation), hospital episodes, prescribing, vaccination, and mortality data. The linked data set is then depersonalised to protect patient confidentiality and used for surveillance, modelling, analysis and reporting to inform clinical prescribing practices and wider medicines programmes for COVID-19 and other infectious diseases and conditions.

Emergency Care Data Set (ECDS), NHS 111 Online Dataset and NHS 111 Pathways Data Set (pseudonymised)

PURPOSE 1 - Syndromic surveillance: The ECDS data set contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for urgent and emergency care. The pseudonymised data provided by NHS England includes all urgent and emergency care episodes (open and completed) in England.

The NHS 111 Online Dataset and NHS 111 Pathways data set contains information on all online contact and calls made to the NHS 111 service by symptomatic patients across England. It includes patient demographic information and information on the symptoms, their severity and the treatment recommended to contacts and callers to the service.

The pseudonymised ECDS and NHS 111 Online data and Pathways data provided by NHS England is processed to support the fulfilment of UKHSA’s health protection remit from the government. This includes syndromic surveillance, which involves the collection, analysis and interpretation of health-related data to provide early warning of human or veterinary public health threats that require public health action. The pseudonymised ECDS and NHS 111 data is used for the daily monitoring of the incidence, prevalence and trends in infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution, that have resulted in urgent and emergency hospital episodes and contacts/calls to NHS 111. This forms part of the UKHSA integrated syndromic surveillance system, which is used for monitoring, analysis and reporting at national, regional and local levels to inform and guide the UKHSA, NHS and wider government response to health protection threats.

Health Survey for England (HSE) 2022: Human Biomonitoring Module (pseudonymised)

PURPOSE 1: Environmental hazards monitoring and infectious disease surveillance and control: The HSE is a longstanding annual survey of the health and health-related behaviours of a sample of persons in households in England. It involves a self-completed questionnaire and a series of nurse-administered physical measurements and blood, saliva and urine tests. The HSE is commissioned by NHS England and undertaken by the Joint Health Surveys Unit of NatCen Social Research and the Research Department of Epidemiology and Public Health at University College London. The HSE 2022 incorporates a human biomonitoring module. This has been commissioned by UKHSA and involves the collection of additional health information from approximately 300 HSE participants aged between 16 and 49. It also includes a request for approval to use their residual blood and urine samples for analysing everyday exposure to chemicals and for ethically-approved antibody prevalence studies.

UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious diseases and other threats to public health. The pseudonymised health questionnaire data and residual blood samples from the HSE human biomonitoring module are used by UKHSA for studies that analyse the health risks associated with exposure to chemicals in the air, water, soil, food and consumer products such as skin care products and household cleaning agents. It may also be used for antibody prevalence studies analysing population immunity to diseases of public health importance where a vaccine exists or is in development.

Civil Registration (Deaths) Data Set, Hospital Episode Statistics (HES), Secondary Uses Service Admitted Patient Care (SUS-APC), and Emergency Care Data Set (ECDS) (identifiable)

PURPOSE 1 - Infectious disease surveillance and control, including the COVID-19 response: The HES, SUS-APC and ECDS data sets contain information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for planned or urgent and emergency care. The Civil Registration (Deaths) data set contains details of the cause of death and basic demographic information for deceased persons. UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious diseases and other threats to public health. The identifiable Civil Registration (Deaths), HES, SUS-APC and ECDS data provided by NHS England includes all deaths and hospital episodes (open and completed) in England and is processed for purposes that support the fulfilment of UKHSA’s health protection remit from the government.

These purposes include, but are not limited to, diagnosing, recognising trends, controlling and preventing, and monitoring and managing:

a) COVID-19: including identifying and responding to cases and outbreaks in community, workplace and healthcare settings; surveillance and modelling of the epidemiology of COVID-19, including monitoring the impact and outcomes of clinical, demographic, ethnic, geographic and socio-economic groups in the population; genomic sequencing and surveillance of COVID-19 variants of interest and concern; monitoring and advising on COVID-19 vaccine safety and effectiveness; implementing and evaluating the Living with COVID plan

b) antimicrobial resistance (AMR): supporting the government’s goal to contain and control AMR through delivery of the UK National Action Plan for AMR, for example through the national surveillance, analysis and reporting of MRSA, MSSA, E.coli bacteraemia, clostridium difficile and other drug resistant infections, streptococcal infections, and antimicrobial usage and resistance and fungal infections

c) healthcare associated infections (HCIA): such as the surveillance, analysis and reporting of blood-borne bacterial infections, fungal infections other pathogens associated with healthcare, and of surgical site infections and infections in critical care units

d) infectious diseases and causative organisms: such as the surveillance, analysis and reporting of hepatitis, HIV and sexually transmitted infections, Monkey Pox, non-tuberculous mycobacteria, shiga toxin-producing E.coli, sepsis, and a range of other notifiable and non-notifiable infectious diseases and causative organisms

e) respiratory diseases: such as the surveillance, analysis and reporting of influenza, respiratory syncytial virus and other respiratory diseases; evaluation of tuberculosis screening programmes

f) sexually transmitted infections: such as the surveillance, analysis and reporting of chlamydia, gonorrhoea and HIV/AIDS; evaluation of the Sexual and Reproductive Health Action Plan for England

g) vaccine safety, efficacy and cost effectiveness: such as the surveillance, analysis and reporting of COVID-19, influenza and other vaccines and antivirals; monitoring the impact of childhood and adult vaccination and immunisation programmes such as the childhood influenza vaccine and pneumococcal vaccines.

The identifiable HES, SUS-APC and ECDS data is processed to remove duplicates and then variously linked to other public health data sets held by UKHSA, including but not limited to laboratory test results, infectious disease reports, viral genomic sequencing, hospitalisation surveillance, vaccination, prescribing, and Civil Registration (Deaths) data, to create a range of reference surveillance and analysis data sets. Many of these other public health data sets, such as infectious disease reports, are often missing important demographic information such as the ethnic group of infected patients, so the identifiable HES, SUS-APC and ECDS data is also processed to provide this missing information. Any future purposes will be within the scope of this Agreement.

These reference public health data sets are then depersonalised where possible to protect patient confidentiality and used for surveillance, analysis and reporting at national, regional and local levels to inform and guide the UKHSA, NHS and wider government response to infectious diseases and other public health threats.

For some health protection purposes, such as identifying and responding to COVID-19 cases and outbreaks in community, workplace and healthcare settings, the processing of patient identifiable data is necessary to enable timely action to be taken to protect public health.

Where identifiable data is not required, for example, to analyse the numbers of hospital admissions and attendances for specific diseases and treatments, only the pseudonymised versions of HES and ECDS are used.

Maternity Services Data Set (MSDS) V2 Commissioning Extract (identifiable)

PURPOSE 1 - Vaccination programme: The MSDS data set contains information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The MSDS V2 Commissioning Extract is an updated and expanded version of the MSDS V1 data set developed by NHS England to support the commissioning and provision of maternal and infant health and care services.

UKHSA’s remit to protect the health of the nation includes responsibility for detecting and responding to infectious diseases, such as COVID-19, influenza and whooping cough (pertussis) and monitoring and reporting on the uptake, safety and effectiveness of vaccines. The identifiable data provided by NHS England to UKHSA is used to: monitor the uptake and safety of vaccines administered in pregnancy; assess the effectiveness of vaccines in preventing hospital admissions and deaths among pregnant women and infants for infections of interest; monitor the maternal and child outcomes of the infection and vaccine; and enable longer-term surveillance of the health of children born to vaccinated women.

The identifiable MSDS data is processed to remove duplicates and linked to other data sets held by UKHSA, including laboratory test results, viral genomic sequencing data (to identify variants of concern or variants under investigation), vaccination data, hospital admissions, and mortality data. The linked data is then depersonalised to protect patient confidentiality and analysed to assess differences by vaccination status in related hospital admissions and pregnancy outcomes and deaths among mothers and their infants. The findings are used to inform and guide the development of NHS vaccination programmes and the government’s wider response to infectious disea

The outputs are directly related to Regulation 3 of The Health Service (Control of Patient Information) Regulations 2002; particularly:

3(1)(a) diagnosing

3(1)(b) recognising trends

3(1)(c) controlling and preventing

and

3(1)(d) monitoring and managing -

3(1)(d)(i) communicable diseases

and other risks to public health under Section 60 of the Health and Social Care Act 2001, as re-enacted by Section 251 of the National Health Service Act 2006, and Regulation 3 of the associated Health Service (Control of Patient Information) Regulations 2002.

Civil Registration (Deaths) Data Set, Covid-19 UK Antibody Testing Results (Pillar 3), Covid-19 UK Non-Hospital Antigen Testing Results (Pillar 2), NHS 11 Online, NHS 111 Pathways, and Secondary Uses Service Payment By Results (SUS-PBR) (identifiable)

PURPOSE 1 - COVID-19 response: The Civil Registration (Deaths), Pillar 2 and 3 Testing, NHS Online and Pathways and SUS-PBR data provided by NHS England is processed to support the UKHSA response to the COVID-19 pandemic by monitoring and modelling the numbers and trends in the following: deaths caused by or associated with COVID-19; COVID-19 antigen and antibody testing; COVID-19-related treatment referrals; and COVID-19-related hospital spells. The results of the processing are used to generate a range of outputs, such as statistics and reports, and to provide advice and guidance to support timely and effective public health action to respond to the COVID-19 pandemic by UKHSA, the NHS, central and local government, and other organisations.

Examples of these outputs include, but are not limited to, the COVID-19 dashboard (https://coronavirus.data.gov.uk), guidance published for health and social care settings (www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance), and advice and reports provided to the UK Chief Medical Officers and scientific advisory committees such as SPI-M.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Electronic Prescribing and Medicines Administration (EPMA) Data Set (identifiable)

PURPOSE 1: Infectious disease surveillance and control, including the COVID-19 response: The identifiable EPMA data is processed to support the fulfilment of UKHSA’s health protection remit by monitoring the appropriateness, efficacy and equitability of antimicrobial prescribing practices among patients with infectious diseases, including COVID-19, and other diseases and conditions.

The results of this processing are used to generate a range of outputs, such as epidemiological reports and clinical prescribing guidance. These outputs are aimed at advising and supporting the development of prescribing practices for patients with COVID-19 and other diseases and conditions. The audiences for these outputs include NHS clinicians, government advisory groups such as the New and Emerging Respiratory Virus Threats Advisory Group (NERVTAG), and other bodies such as the National Institute for Health and Care Excellence and the Care Quality Commission. The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

Published outputs will only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Emergency Care Data Set (ECDS) NHS 111 Online Data Set and NHS 111 Pathways Data Set (pseudonymised)

PURPOSE 1 - Syndromic surveillance: The pseudonymised ECDS and NHS 111 Online data and Pathways data provided by NHS England is processed to support the fulfilment of UKHSA’s syndromic surveillance remit from the government. The daily syndromic surveillance service provides a real-time health protection threat monitoring function within UKHSA and the results of the processing of ECDS and NHS 111 data are used to generate a range of outputs, such as statistics, epidemiological reports and guidance.

These outputs are aimed at guiding and supporting timely and effective public health action to respond to infectious diseases and other public health threats by UKHSA, the NHS, central and local government, other public and private organisations, and the general public.

Examples of these outputs include, but are not limited to, the following:

a) weekly syndromic surveillance reports (www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses)

b) ad hoc surveillance outputs supporting the real-time management and sharing of lessons from public health incidents, such as infectious disease outbreaks, heatwaves and floods, such as the UKHSA national study of flooding and health (www.gov.uk/guidance/flooding-and-health-national-study)

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Health Survey for England (HSE) 2022: Human Biomonitoring Module (pseudonymised)

PURPOSE 1: Environmental hazards monitoring and infectious disease surveillance and control: The pseudonymised HSE human biomonitoring module data and residual samples provided by NHS England are processed to support the fulfilment of UKHSA’s health protection remit from the government. The data from the HSE questionnaire responses and samples are analysed and used to generate a range of outputs, such as statistics and epidemiological reports.

These outputs are aimed at strengthening understanding of the risks to public health of everyday exposure to chemicals, and guiding and supporting public health policies and action to reduce the level of harm. The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Civil Registration (Deaths) Data Set, Hospital Episode Statistics (HES), Secondary Uses Service Admitted Patient Care (SUS-APC), and Emergency Care Data Set (ECDS) (identifiable)

PURPOSE 1 - Infectious disease surveillance and control, including the COVID-19 response: The public health reference data sets generated by UKHSA that include Civil Registration (Deaths), HES, SUS-APC and ECDS data are processed to support the fulfilment of its health protection remit from the government.

The results of this processing are used to generate a range of outputs, such as comparative dashboards, national and official statistics, epidemiological reports, academic publications, clinical and operational guidance, and public guidance. These outputs are aimed at advising, guiding and supporting timely and effective public health action to respond to infectious diseases and other public health threats by UKHSA, the NHS, central and local government, other public and private organisations, and the general public.

Examples of these outputs include, but are not limited to, the following:

a) COVID-19: COVID-19 dashboard (https://coronavirus.data.gov.uk); weekly flu and COVID-19 surveillance reports (www.gov.uk/government/statistics/national-flu-and-covid-19-surveillance-reports-2021-to-2022-season); guidance published for health and social care settings, other non-clinical settings and for the general public (www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance)

b) antimicrobial resistance (AMR): English surveillance programme for antimicrobial utilisation and resistance reports (www.gov.uk/government/publications/english-surveillance-programme-antimicrobial-utilisation-and-resistance-espaur-report); gonococcal resistance to antimicrobials surveillance programme reports (www.gov.uk/government/publications/gonococcal-resistance-to-antimicrobials-surveillance-programme-grasp-report)

c) healthcare associated infections (HCIA): operational guidance and reports for the NHS (www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis); surgical site infection surveillance reports (www.gov.uk/government/collections/surgical-site-infection-ssi-guidance-data-and-analysis); academic publications (eg. Bhattacharya A. et al. Healthcare-associated COVID-19 in England: A national data linkage study. J Infect. 2021 Nov;83(5):565-572. doi: 10.1016/j.jinf.2021.08.039)

d) infectious diseases and causative organisms: annual E.coli reports (www.gov.uk/government/publications/escherichia-coli-e-coli-o157-annual-totals)

e) respiratory diseases: annual influenza surveillance reports (www.gov.uk/government/statistics/annual-flu-reports); weekly flu and COVID-19 surveillance reports (www.gov.uk/government/statistics/national-flu-and-covid-19-surveillance-reports-2021-to-2022-season)

f) sexually transmitted infections: HIV surveillance reports (www.gov.uk/government/statistics/hiv-annual-data-tables); national chlamydia screening programme reports (www.gov.uk/government/statistics/national-chlamydia-screening-programme-ncsp-data-tables); sexually transmitted infections reports (www.gov.uk/government/statistics/sexually-transmitted-infections-stis-annual-data-tables)

g) vaccine safety, efficacy and cost effectiveness: monitoring reports of the effectiveness of COVID-19 vaccination (www.gov.uk/guidance/monitoring-reports-of-the-effectiveness-of-covid-19-vaccination); monitoring reports of influenza and other vaccinations offered under the national immunisation programme (www.gov.uk/government/collections/vaccine-uptake); monitoring reports of the characteristics, diagnosis, management, surveillance and epidemiology of pneumococcal disease (www.gov.uk/government/collections/pneumococcal-disease-guidance-data-and-analysis)

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Maternity Services Data Set (MSDS) V2 Commissioning Extract)

PURPOSE 1 - Vaccination programme: The linked and depersonalised version of the MSDS data is analysed by UKHSA to monitor the uptake and safety of vaccines administered in pregnancy, their effectiveness in preventing hospitalisation and death, and their impact on maternal and child health outcomes.

The results of these analyses are used to generate a range of statistics and reports monitoring the longer term impacts of infections and vaccination on maternal and child health. The results are also used to support UKHSA, NHS England, the wider NHS and scientific advisory committees such as JCVI on the development of vaccination programmes. The findings of the analyses are also submitted for publication in peer reviewed academic journals.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Medicines Dispensed in Primary Care Data Set (NHSBSA) (identifiable)

PURPOSE 1: Antimicrobial resistance: The identifiable NHSBSA data is processed to support the fulfilment of UKHSA’s health protection remit by monitoring the delivery of the UK action plan for antimicrobial resistance (AMR).

The results of this processing are used to generate a range of outputs, such as epidemiological reports, statistical indicators and clinical and operational guidance. Examples of these outputs include: the annual English surveillance programme for antimicrobial utilisation and resistance (ESPAUR) report (www.gov.uk/government/publications/english-surveillance-programme-antimicrobial-utilisation-and-resistance-espaur-report); updates on the AMR national action plan (www.gov.uk/government/publications/uk-5-year-action-plan-for-antimicrobial-resistance-2019-to-2024); and the AMR indicators in the Fingertips open access public health data tool (https://fingertips.phe.org.uk/profile/amr-local-indicators). The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

The audiences for these outputs include UKHSA, DHSC, NHS England, groups such as the Advisory Committee on Antimicrobial Prescribing, Resistance and Healthcare Associated Infection (APRHAI), and healthcare practitioners.

Published outputs will only contain aggregate data and statistics, with small numbers suppressed in accordance with NHSE and ONS guidance. No information that identifies individual patients is published by UKHSA.

NHS 111 Online Data Set and NHS 111 Pathways Data (pseudonymised)

PURPOSE 1 - Health threat surveillance: The NHS 111 Pathways data is processed to support the fulfilment of UKHSA’s health protection remit from the government.

The results of the processing of the Pathways data are used to generate a range of outputs, including forecasting models, real-time situational awareness tools and statistical reports. These outputs are aimed at guiding and supporting timely and effective public health policy decision-making and action to respond to health security hazards by UKHSA, DHSC, the NHS, and other organisations.

The findings of the analyses may also be submitted for publication in peer reviewed academic journals. Published outputs only contain aggregate data and statistics, with small numbers suppressed in accordance with NHSE and ONS guidance. No information that identifies individuals is published by UKHSA.

COVID-19 Therapeutics Eligible Population Data Set (identifiable)

PURPOSE 1 - COVID-19 response: The identifiable COVID-19 Therapeutics Data Set is processed to support the fulfilment of UKHSA’s remit to monitor and manage the delivery, efficacy and safety of immunisation and other infectious disease preventative treatment programmes.

The results of this processing are used to generate a range of outputs, such as epidemiological reports and clinical and operational guidance. These outputs are aimed at advising and supporting the implementation and development of the COVID-19 therapeutics programme by the NHS, as well as the wider government response to COVID-19. The audiences for these outputs include the DHSC COVID-19 Therapeutics Taskforce, government advisory groups such as the New and Emerging Respiratory Virus Threats Advisory Group (NERVTAG), and NHS commissioners and service providers. The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

Published outputs will only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Wherever possible, UKHSA uses aggregate or anonymous data but many of its activities rely on personal data that directly identifies individuals. The reasons for UKHSA using personal data are either to enable direct contact with individuals, for example to provide them with public health advice, or to link together different sources of data to better understand the impacts of infectious diseases and other threats on individual and population health.

Most of the data provided to UKHSA by NHS England is in the form of identifiable data. This data is typically linked to other sources of health protection information that UKHSA itself collects from other sources, such as the infectious diseases notifications that all doctors and laboratories are required to send to UKHSA. The purpose of this linkage is to increase the completeness and value of this public health data to UKHSA.

The benefits of UKHSA using the data provided by NHS England alongside the other sources of data it holds can be grouped under two broad headings:

a) Monitoring infectious diseases and other health threats: The data provided by NHS England is used on a daily basis by UKHSA to support its monitoring of the numbers, trends, risk factors and health impacts of infectious diseases and other external health threats. For example, information from the Hospital Episode Statistics data set is routinely linked to the information UKHSA already separately holds on patients with acute respiratory infection, bloodstream infections, hepatitis C, severe influenza and other infectious diseases. The purpose of this linkage is to augment these records with additional information on the frequency and reasons for hospital admissions among infected patients, the treatments they receive, and their outcomes (such as repeat admissions to hospital or death) that UKHSA would not otherwise have direct access to. These enhanced data sets are analysed and used to produce operational advice and surveillance reports that provide the intelligence needed by UKHSA, government and its advisors, the NHS, other organisations with public health commissioning and service provision responsibilities, and university researchers to better understand the threat to public health presented by infectious diseases, and to inform the planning and provision of prevention and treatment services to reduce the health risks to individuals and populations. An example is the UKHSA Hepatitis C Testing and Treatment Dashboard (www.gov.uk/guidance/hepatitis-c-testing-and-treatment-dashboard). This is regularly updated by UKHSA and monitors hepatitis C prevention, testing, diagnoses and treatment by the NHS to support the World Health Organisation goal of eliminating hepatitis C as a major public health threat by 2030. The intelligence the dashboard provides is in turn used by the NHS to help ensure that appropriate prevention and treatment services are provided to meet the needs of infected patients.

b) Controlling infectious diseases and other health threats: COVID-19 and other infectious diseases present serious threats to individual and population health, both in the UK and internationally. The data provided by NHS England has been used by UKHSA in a range of ways to support its role in responding to COVID-19 as well as other infectious diseases. An example is the COVID-19 antigen test results data, which has been used by UKHSA to estimate the incidence and prevalence of the virus in the population and calculate the R (reproduction) number at national and local levels (which is a measure of how quickly the infection is spreading). This intelligence has been used by UKHSA and expert groups such as SPI-M to inform government decisions on when and for how long to introduce restrictions on people’s movements to reduce the spread of infection. This intelligence has also been used by UKHSA and the NHS to provide advice to members of the public on the actions they need to take to protect themselves and others from infection.

The UK Health Security Agency (UKHSA) is the national expert agency responsible for protecting the nation’s health and a category 1 under the Civil Contingencies Act 2004 (Category 1 responders are those organisations at the core of emergency responses). It is an executive agency of the Department of Health and Social Care (DHSC) and fulfils the statutory health protection duties of the Secretary of State as set out in Section 2A of the NHS Act 2006, as inserted by Section 11 of the Health and Social Care Act 2012. UKHSA was established on 1 April 2021 as part of the government’s plan to transform the UK public health system (www.gov.uk/government/publications/transforming-the-public-health-system/transforming-the-public-health-system-reforming-the-public-health-system-for-the-challenges-of-our-times) and become fully operational on 1 October 2021. It combines the health protection activities previously undertaken by Public Health England (PHE) with all of the activities of NHS Test and Trace and the Joint Biosecurity Centre (JBC). UKHSA’s priorities are set out in its annual remit letter from the government.

UKHSA is responsible for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from communicable diseases and other threats to public health. It is a direct provider of health protection services as well as a processor of data and information for public health purposes that do not involve direct interaction with patients and the public. The successful fulfilment of its remit depends on its ability to process data on the health of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data UKHSA uses it collects directly, but it also depends on timely access to other sources of health data, such as the healthcare activity data collected at a national level by NHS England. This Data Sharing Agreement (DSA) supports the statutory remit of UKHSA by setting out the legal basis and public health justification for sharing specified data sets by NHS England.

UKHSA commits to implement and comply with internal governance controls to ensure that access to the data it processes under this DSA is managed in accordance with data protection legislation, national codes of practice (including the Caldicott principles), national information standards, national assurance frameworks (including the Data Security and Protection Toolkit) and appropriate best practice guidance.

Identifying data is required to enable linkage to other data sets held by UKHSA, linked data is then pseudonymised before analysis. Identifying data is not used for research purposes. There are dedicated teams within UKHSA who work on projects associated with research and separate teams who work on projects for statutory purposes (as per this DSA). The research teams are aware they must apply for data use under a separate DSA to use NHS England data for research projects.

LEGAL BASIS

The legal bases for UKHSA to process each of the datasets detailed in this DSA vary according to the purpose and may include:

a) UK GDPR Article 6(1)(e) processing is necessary for the performance of a task carried out in the public interest

b) UK GDPR Article 9(2)(i) processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health

c) Data Protection Act Schedule 1 Part 1 (2) health or social care purposes

d) Data Protection Act Schedule 1 Part 1 (3) public health

e) Data Protection Act Schedule 1 Part 1 (4) research

f) Data Protection Act Schedule 1 Part 2 (6) statutory etc. and government purposes

g) Data Protection Act Schedule 1 Part 2 (19) processing for archiving, research and statistical purposes

For most UKHSA purposes, UK GDPR Articles 6(1)(e) and 9(2)(i) and Data Protection Act Schedule 1 Part 1 (3) public health apply.

UKHSA further has approval from the Secretary of State for Health and Social Care to process confidential patient information for a range of health protection purposes under Section 60 of the Health and Social Care Act 2001, as re-enacted by Section 251 of the National Health Service Act 2006, and Regulation 3 of the associated Health Service (Control of Patient Information) Regulations 2002. The purposes permitted under Regulation 3 include:

3(1)(a) diagnosing communicable diseases and other risks to public health

3(1)(b) recognising trends in such diseases and risks

3(1)(c) controlling and preventing the spread of such diseases and risks

3(1)(d) monitoring and managing:

(i) outbreaks of communicable disease

(ii) incidents of exposure to communicable disease

(iii) the delivery, efficacy and safety of immunisation programmes

(iv) adverse reactions to vaccines and medicines

(v) risks of infection acquired from food or the environment (including water supplies)

(vi) the giving of information to persons about the diagnosis of communicable disease and risks of acquiring such disease

Regulation 7(2) of the associated Health Service (Control of Patient Information) Regulations 2002 stipulates that anyone processing confidential patient information under COPI must be a health professional or person who in the circumstances owes a duty of confidentiality which is equivalent to that which would arise if that person were a health professional.

To note, approvals to process confidential patient information under Regulation 3, excepting Regulation 3(4), are not subject to advice from the Health Research Authority’s Confidentiality Advisory Group.

NHS England and UKHSA statutory remits: This DSA recognises the remit of NHS England as set out in the Health and Social Care Act 2012 and the Care Act 2014, and of UKHSA as set out in its annual remit letter from the government (www.gov.uk/government/publications/ukhsa-priorities-in-2024-to-2025). It also recognises the specific legal gateways provided to UKHSA under Section 251 of the NHS Act 2006 and Regulation 3 of the Health Service (Control of Patient Information) Regulations 2002 to process confidential patient information. The patient data processed by UKHSA under Regulation 3 has also been granted specific exemption from national data opt outs by the DHSC.

UKHSA is responsible for discharging the statutory health improvement duties of the Secretary of State for Health and Social Care that were previously fulfilled by PHE. In recognition of this organisational succession, this DSA has been amended to change the organisation to UKHSA. The agreement has been amended to enable UKHSA to link updated extracts for the data sets previously disseminated to PHE and which transferred to UKHSA control when PHE closed at the end of September 2021, in order to ensure the continuity of the nationally-important health protection services provided by UKHSA.

JUSTIFICATION FOR REQUESTING CONFIDENTIAL PATIENT INFORMATION

Several data sets containing confidential patient information for the whole of the population of England are disseminated to UKHSA by NHS England under this DSA.

Wherever possible, UKHSA processes data in aggregate or anonymous forms. Where these types of data are not available or not suitable for the end purpose, data sets that have been pseudonymised through the removal of direct patient identifiers such as name, date of birth and NHS Number are used. However, to fulfil many of its health protection responsibilities, UKHSA needs to process confidential patient information that directly identifies individuals. The justifications for it using data in this form are either to enable direct contact with individuals, for example to provide them with urgent public health advice, or to link together different sources of data to better understand the impacts of infectious diseases and other threats on individual and population health.

The confidential patient information provided by NHS England is typically linked to other sources of health protection information that UKHSA collects either directly from individuals, from the providers of health and care services, or from other organisations that support the health and care system in the UK, such as NHS Business Services Authority and the Office for National Statistics. The purpose of this linkage is to increase the completeness and value of these public health data sets to UKHSA in preventing, detecting, analysing and responding to infectious diseases and other threats to individual and population health.

The justification for UKHSA receiving whole population data sets from NHS England, such as the complete Emergency Care, Secondary Uses Service and Hospital Episode Statistics data sets for all patients attending hospitals in England, is to enable the timely and efficient linkage of information on the reasons for admission, the treatments received and patient outcomes to the data UKHSA holds on patients affected by infectious diseases and chemical, environmental and radiological threats to health. Health protection threats can often rapidly emerge and affect large numbers of people. For UKHSA to request access to hospital episodes and spells data specifically for the groups of individuals affected by separate health protection incidents would seriously affect its ability to rapidly assess the threat to individuals and the wider population, and to advise government, the NHS and other organisations on the appropriate response to protect public health.

PROCESSING ARRANGEMENTS AND CONTROLS

UKHSA is a new organisation and working towards integrating the previously separate data storage and processing systems of its sender organisations. While this work is underway, the data sets transferred by NHS England to UKHSA will variously be stored in one of the following secure data processing systems:

a) the UKHSA Data Lake service, which was previously used to receive the data sets disseminated to PHE

b) the UKHSA EDGE (Environment for Data Gathering and Engineering) service, which was previously used to receive the data sets disseminated to the JBC

c) the UKHSA EDAP (Enterprise Data and Analytics Platform), the new data management and analytics platform being built by UKHSA to replace EDGE and also end its use of the Data Lake

Throughout 2024 and 2025 UKHSA is progressively transferring over the processing of the data disseminated under this DSA from the Data Lake and EDGE services to EDAP. EDAP is an enterprise data management and analytics platform developed by UKHSA to provide a secure, centrally-managed service enabling controlled access to analytic environments and tools that minimise the need for UKHSA scientists, epidemiologists and analysts to directly access confidential patient information. The transition of UKHSA’s data processing activities to EDAP is a complex process that will necessitate a time-limited period during which duplicate copies of the historic data already disseminated by NHS England, as well as updated extracts of the disseminated data sets, will need to be hosted and flow into EDAP at the same time as they are held and received into the Data Lake and EDGE. UKHSA commits to minimising the duration of this period of parallel storage, receipt and processing of the data sets disseminated under this DSA by NHS England .

With specific regard to the Data Lake, this service is currently shared between UKHSA and the DHSC. The DHSC is responsible for the discharge of the statutory health improvement duties of the Secretary of State for Health and Social Care under Section 2B of the NHS Act 2006, as amended by Section 12 of the Health and Social Care Act 2012, that were previously fulfilled by PHE. Authorised DHSC staff are being provided with access to the data sets stored in the Data Lake which they have specific approval to process to ensure that there is no disruption to the continuity of nationally-important health improvement functions following the closure of PHE.

The Data Lake is a shared service but strong controls are in place to ensure that UKHSA and DHSC staff can only access the data sets that are covered by each organisations’ respective separate DSAs with NHS England. The Data Lake is hosted on the UKHSA information technology network, with day-to-day management of the service, including the receipt, basic verification/validation and loading of the data transferred by NHS England, undertaken by staff from DHSC. A memorandum of understanding has been agreed between UKHSA and DHSC setting out the arrangements and responsibilities for the management of the Data Lake service.

UKHSA has implemented the following governance controls for the Data Lake:

a) UKHSA staff can only access data in the Data Lake which is specifically covered by the UKHSA DSA with NHS England

b) UKHSA data stored in the Data Lake can only be processed for the purposes specified in the UKHSA DSA

c) UKHSA staff requests to access specific data sets stored in the Data Lake must be made in writing and name the staff for whom access is requested

d) The data access request process assesses the legal basis and the necessity and proportionality of the processing

e) Data access requests require the approval of the information asset owner and the UKHSA Caldicott Guardian or an authorised deputy, who will also ensure compliance with the Caldicott principles

f) Data Lake access is monitored to ensure that UKHSA staff only process the data sets they have approval to use

Additionally, the DHSC staff responsible for loading the extracts disseminated under the UKHSA DSA into the Data Lake are not authorised to process this data for any other purpose, are not permitted to copy or transfer the data to any other location not authorised by UKHSA, and are not permitted to provide access to this data to any DHSC staff or to UKHSA staff who do not have the required access permissions.

Comparable governance controls have been implemented by DHSC to manage the access of its staff to the Data Lake.

Other controls implemented by UKHSA to ensure the security and protection of data transferred by NHS England include, but are not limited to:

a) All data shared under this DSA is stored and processed in secure locations in England and Wales.

b) All UKHSA information assets have a named owner who is a director-level employee with responsibility for the overall management of the asset; a suite of corporate data security and protection policies and procedures is in place describing these responsibilities and ensuring that consistent standards are applied to managing the data held in these information assets; UKHSA information assets remain separate and are not joined or linked unless there is a legal basis and public health justification for UKHSA to do so

c) NHS England data is transferred to UKHSA using the NHS England Secure Electronic File Exchange (SEFT) service or Message Exchange for Social Care and Health (MESH) service and then stored in a secure locations on the UKHSA information technology network

DATA SHARING WITH THIRD PARTIES

The bulk of the outputs based on the processing of the data sets disseminated to UKHSA by NHS England are in the form of statistics, reports and guidance that describe the incidence, prevalence, trends, epidemiological characteristics and related information necessary to guide and support the public health actions needed to prevent and control infectious diseases and other threats to public health. Outputs published on the UKHSA website or without restriction elsewhere contain aggregate data and statistics only, with small numbers suppressed in accordance with NHS England and Office for National Statistics (ONS) guidance. No information that identifies individual patients is published by UKHSA.

For some public health purposes, the data disseminated by NHS England may be linked to other data sets controlled by UKHSA to generate reference public health data sets that are used for the surveillance and control of infectious diseases and other public health threats. Data from these linked reference data sets may be shared by UKHSA with third parties in the form of identifiable or de-personalised extracts. Identifiable data is only shared with third parties that have a legal basis to process this form of data, and only the minimum necessary data is shared for the required purpose. All sharing of identifiable or de-personalised data by UKHSA is controlled under written data sharing agreements that contain appropriate data security and protection clauses, including retention and disposal clauses. UKHSA does not share with third parties any extracts of the data sets disseminated by NHS England that have not been linked to other public health data sets controlled by UKHSA. Any requests to access the unlinked data sets, such as the unlinked hospitalisations data disseminated by NHS England, are referred to NHS England by UKHSA.

UKHSA and NHS England also agree that any onwards transfer, either whole or in part, of personal confidential data supplied to UKHSA by NHS England will conform to the same legal constraints that NHS England is subject to. These include the provisions in the Care Act 2014, which stipulate that data may only be disseminated for the purposes of providing health care or adult social care, or supporting the promotion of health.

The National Data Opt Out must be upheld by all health and adult social care organisations, including the UK Health Security Agency (UKHSA). See here for more details on where UKHSA uphold the national data opt-out: https://www.gov.uk/government/publications/accessing-ukhsa-protected-data/approval-standards-and-guidelines-upholding-objections-under-the-national-data-opt-out”

UKHSA publish a Data Access Approvals Register: https://www.gov.uk/government/publications/data-access-approvals-register

OTHER DATA SETS

The majority of the data sets disseminated to UKHSA by NHS England are ‘onboarded’ into the NHS England Data Access Service (DAS) system. In addition, the following data sets, are disseminated to UKHSA:

a) NHS 111 Pathways Data – a daily extract of pseudonymised telephony calls data to the NHS 111 service, from 2020/21 to latest available

b) NHS 111 Online Data Set – daily extract of pseudonymised contacts/enquiries data to the NHS 111 Online service, from 2013/14 M05 to latest available

PROCESSING OBJECTIVES

Specific information regarding the purposes for the processing, the method of processing and the outputs and benefits of the processing for each data set disseminated to UKHSA by NHS England is provided below.

Civil Registration (Deaths) Data Set, Covid-19 UK Antibody Testing Results (Pillar 3), Covid-19 UK Non-Hospital Antigen Testing Results (Pillar 2), NHS 111 Online, NHS 111 Pathways, and Secondary Uses Service Payment By Results (SUS-PBR) (identifiable)

PURPOSE 1 - COVID-19 response: The Civil Registration (Deaths) data set contains details of the cause of death and basic demographic information for deceased persons. The identifiable data provided by NHS England includes all deaths in England. The identifiable Pillar 2 Testing data set contains information on COVID-19 antigen swab testing conducted at drive-through test centres, mobile testing units, satellite test centres, home testing and care home testing. The identifiable Pillar 3 Testing data set contains information on COVID-19 antibody serology testing. The NHS Online and Pathways data contains information on the assessment, triage and onward referral of callers to the NHS 111 service. The identifiable SUS-PBR data contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for planned or urgent care.

UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious disease threats. The Civil Registration (Deaths), Pillar 2 and 3 Testing, NHS Pathways and SUS-PBR data is processed for purposes that support the UKHSA response to COVID-19, including monitoring, modelling, analysing, reporting and advising on the national, regional and local planning and response to the evolving pandemic.

The identifiable Civil Registration (Deaths), Pillar 2 and 3 Testing, and SUS-PBR data is linked to other public health data sets held by UKHSA, including but not limited to laboratory test results and viral genomic sequencing data, to create a COVID-19 reference surveillance and analysis data set. This reference data set is then depersonalised to protect patient confidentiality and used for surveillance, modelling, analysis and reporting to inform and guide the UKHSA, NHS and wider government response to COVID-19.

Electronic Prescribing and Medicines Administration (EPMA) Data Set (identifiable)

PURPOSE 1: Infectious disease surveillance and control, including the COVID-19 response: The EPMA data set contains information on medicines prescribed and administered to hospital patients in NHS Trusts in England. The identifiable EPMA data provided by NHS England is processed to support the fulfilment of UKHSA’s health protection remit from the government. This includes responsibility for contributing to the ongoing national response to the COVID-19 pandemic by monitoring medicine prescribing practices, particularly antimicrobials and immunomodulatory therapy, and assessing their effectiveness by analysing the impacts on the outcomes of hospital patients with COVID-19 (including those with a preceding, co-infection or secondary infection with an additional respiratory virus, bacterial or fungal pathogen) as well as on patients with infections other than SARS-CoV-2.

The identifiable EPMA is linked to other public health data sets held by UKHSA, including laboratory test results, viral genomic sequencing (to identify variants of concern or variants under investigation), hospital episodes, prescribing, vaccination, and mortality data. The linked data set is then depersonalised to protect patient confidentiality and used for surveillance, modelling, analysis and reporting to inform clinical prescribing practices and wider medicines programmes for COVID-19 and other infectious diseases and conditions.

Emergency Care Data Set (ECDS), NHS 111 Online Dataset and NHS 111 Pathways Data Set (pseudonymised)

PURPOSE 1 - Syndromic surveillance: The ECDS data set contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for urgent and emergency care. The pseudonymised data provided by NHS England includes all urgent and emergency care episodes (open and completed) in England.

The NHS 111 Online Dataset and NHS 111 Pathways data set contains information on all online contact and calls made to the NHS 111 service by symptomatic patients across England. It includes patient demographic information and information on the symptoms, their severity and the treatment recommended to contacts and callers to the service.

The pseudonymised ECDS and NHS 111 Online data and Pathways data provided by NHS England is processed to support the fulfilment of UKHSA’s health protection remit from the government. This includes syndromic surveillance, which involves the collection, analysis and interpretation of health-related data to provide early warning of human or veterinary public health threats that require public health action. The pseudonymised ECDS and NHS 111 data is used for the daily monitoring of the incidence, prevalence and trends in infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution, that have resulted in urgent and emergency hospital episodes and contacts/calls to NHS 111. This forms part of the UKHSA integrated syndromic surveillance system, which is used for monitoring, analysis and reporting at national, regional and local levels to inform and guide the UKHSA, NHS and wider government response to health protection threats.

Health Survey for England (HSE) 2022: Human Biomonitoring Module (pseudonymised)

PURPOSE 1: Environmental hazards monitoring and infectious disease surveillance and control: The HSE is a longstanding annual survey of the health and health-related behaviours of a sample of persons in households in England. It involves a self-completed questionnaire and a series of nurse-administered physical measurements and blood, saliva and urine tests. The HSE is commissioned by NHS England and undertaken by the Joint Health Surveys Unit of NatCen Social Research and the Research Department of Epidemiology and Public Health at University College London. The HSE 2022 incorporates a human biomonitoring module. This has been commissioned by UKHSA and involves the collection of additional health information from approximately 300 HSE participants aged between 16 and 49. It also includes a request for approval to use their residual blood and urine samples for analysing everyday exposure to chemicals and for ethically-approved antibody prevalence studies.

UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious diseases and other threats to public health. The pseudonymised health questionnaire data and residual blood samples from the HSE human biomonitoring module are used by UKHSA for studies that analyse the health risks associated with exposure to chemicals in the air, water, soil, food and consumer products such as skin care products and household cleaning agents. It may also be used for antibody prevalence studies analysing population immunity to diseases of public health importance where a vaccine exists or is in development.

Civil Registration (Deaths) Data Set, Hospital Episode Statistics (HES), Secondary Uses Service Admitted Patient Care (SUS-APC), and Emergency Care Data Set (ECDS) (identifiable)

PURPOSE 1 - Infectious disease surveillance and control, including the COVID-19 response: The HES, SUS-APC and ECDS data sets contain information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for planned or urgent and emergency care. The Civil Registration (Deaths) data set contains details of the cause of death and basic demographic information for deceased persons. UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious diseases and other threats to public health. The identifiable Civil Registration (Deaths), HES, SUS-APC and ECDS data provided by NHS England includes all deaths and hospital episodes (open and completed) in England and is processed for purposes that support the fulfilment of UKHSA’s health protection remit from the government.

These purposes include, but are not limited to, diagnosing, recognising trends, controlling and preventing, and monitoring and managing:

a) COVID-19: including identifying and responding to cases and outbreaks in community, workplace and healthcare settings; surveillance and modelling of the epidemiology of COVID-19, including monitoring the impact and outcomes of clinical, demographic, ethnic, geographic and socio-economic groups in the population; genomic sequencing and surveillance of COVID-19 variants of interest and concern; monitoring and advising on COVID-19 vaccine safety and effectiveness; implementing and evaluating the Living with COVID plan

b) antimicrobial resistance (AMR): supporting the government’s goal to contain and control AMR through delivery of the UK National Action Plan for AMR, for example through the national surveillance, analysis and reporting of MRSA, MSSA, E.coli bacteraemia, clostridium difficile and other drug resistant infections, streptococcal infections, and antimicrobial usage and resistance and fungal infections

c) healthcare associated infections (HCIA): such as the surveillance, analysis and reporting of blood-borne bacterial infections, fungal infections other pathogens associated with healthcare, and of surgical site infections and infections in critical care units

d) infectious diseases and causative organisms: such as the surveillance, analysis and reporting of hepatitis, HIV and sexually transmitted infections, Monkey Pox, non-tuberculous mycobacteria, shiga toxin-producing E.coli, sepsis, and a range of other notifiable and non-notifiable infectious diseases and causative organisms

e) respiratory diseases: such as the surveillance, analysis and reporting of influenza, respiratory syncytial virus and other respiratory diseases; evaluation of tuberculosis screening programmes

f) sexually transmitted infections: such as the surveillance, analysis and reporting of chlamydia, gonorrhoea and HIV/AIDS; evaluation of the Sexual and Reproductive Health Action Plan for England

g) vaccine safety, efficacy and cost effectiveness: such as the surveillance, analysis and reporting of COVID-19, influenza and other vaccines and antivirals; monitoring the impact of childhood and adult vaccination and immunisation programmes such as the childhood influenza vaccine and pneumococcal vaccines.

The identifiable HES, SUS-APC and ECDS data is processed to remove duplicates and then variously linked to other public health data sets held by UKHSA, including but not limited to laboratory test results, infectious disease reports, viral genomic sequencing, hospitalisation surveillance, vaccination, prescribing, and Civil Registration (Deaths) data, to create a range of reference surveillance and analysis data sets. Many of these other public health data sets, such as infectious disease reports, are often missing important demographic information such as the ethnic group of infected patients, so the identifiable HES, SUS-APC and ECDS data is also processed to provide this missing information. Any future purposes will be within the scope of this Agreement.

These reference public health data sets are then depersonalised where possible to protect patient confidentiality and used for surveillance, analysis and reporting at national, regional and local levels to inform and guide the UKHSA, NHS and wider government response to infectious diseases and other public health threats.

For some health protection purposes, such as identifying and responding to COVID-19 cases and outbreaks in community, workplace and healthcare settings, the processing of patient identifiable data is necessary to enable timely action to be taken to protect public health.

Where identifiable data is not required, for example, to analyse the numbers of hospital admissions and attendances for specific diseases and treatments, only the pseudonymised versions of HES and ECDS are used.

Maternity Services Data Set (MSDS) V2 Commissioning Extract (identifiable)

PURPOSE 1 - Vaccination programme: The MSDS data set contains information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The MSDS V2 Commissioning Extract is an updated and expanded version of the MSDS V1 data set developed by NHS England to support the commissioning and provision of maternal and infant health and care services.

UKHSA’s remit to protect the health of the nation includes responsibility for detecting and responding to infectious diseases, such as COVID-19, influenza and whooping cough (pertussis) and monitoring and reporting on the uptake, safety and effectiveness of vaccines. The identifiable data provided by NHS England to UKHSA is used to: monitor the uptake and safety of vaccines administered in pregnancy; assess the effectiveness of vaccines in preventing hospital admissions and deaths among pregnant women and infants for infections of interest; monitor the maternal and child outcomes of the infection and vaccine; and enable longer-term surveillance of the health of children born to vaccinated women.

The identifiable MSDS data is processed to remove duplicates and linked to other data sets held by UKHSA, including laboratory test results, viral genomic sequencing data (to identify variants of concern or variants under investigation), vaccination data, hospital admissions, and mortality data. The linked data is then depersonalised to protect patient confidentiality and analysed to assess differences by vaccination status in related hospital admissions and pregnancy outcomes and deaths among mothers and their infants. The findings are used to inform and guide the development of NHS vaccination programmes and the government’s wi

The outputs are directly related to Regulation 3 of The Health Service (Control of Patient Information) Regulations 2002; particularly:

3(1)(a) diagnosing

3(1)(b) recognising trends

3(1)(c) controlling and preventing

and

3(1)(d) monitoring and managing -

3(1)(d)(i) communicable diseases

and other risks to public health under Section 60 of the Health and Social Care Act 2001, as re-enacted by Section 251 of the National Health Service Act 2006, and Regulation 3 of the associated Health Service (Control of Patient Information) Regulations 2002.

Civil Registration (Deaths) Data Set, Covid-19 UK Antibody Testing Results (Pillar 3), Covid-19 UK Non-Hospital Antigen Testing Results (Pillar 2), NHS 11 Online, NHS 111 Pathways, and Secondary Uses Service Payment By Results (SUS-PBR) (identifiable)

PURPOSE 1 - COVID-19 response: The Civil Registration (Deaths), Pillar 2 and 3 Testing, NHS Online and Pathways and SUS-PBR data provided by NHS England is processed to support the UKHSA response to the COVID-19 pandemic by monitoring and modelling the numbers and trends in the following: deaths caused by or associated with COVID-19; COVID-19 antigen and antibody testing; COVID-19-related treatment referrals; and COVID-19-related hospital spells. The results of the processing are used to generate a range of outputs, such as statistics and reports, and to provide advice and guidance to support timely and effective public health action to respond to the COVID-19 pandemic by UKHSA, the NHS, central and local government, and other organisations.

Examples of these outputs include, but are not limited to, the COVID-19 dashboard (https://coronavirus.data.gov.uk), guidance published for health and social care settings (www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance), and advice and reports provided to the UK Chief Medical Officers and scientific advisory committees such as SPI-M.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Electronic Prescribing and Medicines Administration (EPMA) Data Set (identifiable)

PURPOSE 1: Infectious disease surveillance and control, including the COVID-19 response: The identifiable EPMA data is processed to support the fulfilment of UKHSA’s health protection remit by monitoring the appropriateness, efficacy and equitability of antimicrobial prescribing practices among patients with infectious diseases, including COVID-19, and other diseases and conditions.

The results of this processing are used to generate a range of outputs, such as epidemiological reports and clinical prescribing guidance. These outputs are aimed at advising and supporting the development of prescribing practices for patients with COVID-19 and other diseases and conditions. The audiences for these outputs include NHS clinicians, government advisory groups such as the New and Emerging Respiratory Virus Threats Advisory Group (NERVTAG), and other bodies such as the National Institute for Health and Care Excellence and the Care Quality Commission. The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

Published outputs will only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Emergency Care Data Set (ECDS) NHS 111 Online Data Set and NHS 111 Pathways Data Set (pseudonymised)

PURPOSE 1 - Syndromic surveillance: The pseudonymised ECDS and NHS 111 Online data and Pathways data provided by NHS England is processed to support the fulfilment of UKHSA’s syndromic surveillance remit from the government. The daily syndromic surveillance service provides a real-time health protection threat monitoring function within UKHSA and the results of the processing of ECDS and NHS 111 data are used to generate a range of outputs, such as statistics, epidemiological reports and guidance.

These outputs are aimed at guiding and supporting timely and effective public health action to respond to infectious diseases and other public health threats by UKHSA, the NHS, central and local government, other public and private organisations, and the general public.

Examples of these outputs include, but are not limited to, the following:

a) weekly syndromic surveillance reports (www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses)

b) ad hoc surveillance outputs supporting the real-time management and sharing of lessons from public health incidents, such as infectious disease outbreaks, heatwaves and floods, such as the UKHSA national study of flooding and health (www.gov.uk/guidance/flooding-and-health-national-study)

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Health Survey for England (HSE) 2022: Human Biomonitoring Module (pseudonymised)

PURPOSE 1: Environmental hazards monitoring and infectious disease surveillance and control: The pseudonymised HSE human biomonitoring module data and residual samples provided by NHS England are processed to support the fulfilment of UKHSA’s health protection remit from the government. The data from the HSE questionnaire responses and samples are analysed and used to generate a range of outputs, such as statistics and epidemiological reports.

These outputs are aimed at strengthening understanding of the risks to public health of everyday exposure to chemicals, and guiding and supporting public health policies and action to reduce the level of harm. The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Civil Registration (Deaths) Data Set, Hospital Episode Statistics (HES), Secondary Uses Service Admitted Patient Care (SUS-APC), and Emergency Care Data Set (ECDS) (identifiable)

PURPOSE 1 - Infectious disease surveillance and control, including the COVID-19 response: The public health reference data sets generated by UKHSA that include Civil Registration (Deaths), HES, SUS-APC and ECDS data are processed to support the fulfilment of its health protection remit from the government.

The results of this processing are used to generate a range of outputs, such as comparative dashboards, national and official statistics, epidemiological reports, academic publications, clinical and operational guidance, and public guidance. These outputs are aimed at advising, guiding and supporting timely and effective public health action to respond to infectious diseases and other public health threats by UKHSA, the NHS, central and local government, other public and private organisations, and the general public.

Examples of these outputs include, but are not limited to, the following:

a) COVID-19: COVID-19 dashboard (https://coronavirus.data.gov.uk); weekly flu and COVID-19 surveillance reports (www.gov.uk/government/statistics/national-flu-and-covid-19-surveillance-reports-2021-to-2022-season); guidance published for health and social care settings, other non-clinical settings and for the general public (www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance)

b) antimicrobial resistance (AMR): English surveillance programme for antimicrobial utilisation and resistance reports (www.gov.uk/government/publications/english-surveillance-programme-antimicrobial-utilisation-and-resistance-espaur-report); gonococcal resistance to antimicrobials surveillance programme reports (www.gov.uk/government/publications/gonococcal-resistance-to-antimicrobials-surveillance-programme-grasp-report)

c) healthcare associated infections (HCIA): operational guidance and reports for the NHS (www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis); surgical site infection surveillance reports (www.gov.uk/government/collections/surgical-site-infection-ssi-guidance-data-and-analysis); academic publications (eg. Bhattacharya A. et al. Healthcare-associated COVID-19 in England: A national data linkage study. J Infect. 2021 Nov;83(5):565-572. doi: 10.1016/j.jinf.2021.08.039)

d) infectious diseases and causative organisms: annual E.coli reports (www.gov.uk/government/publications/escherichia-coli-e-coli-o157-annual-totals)

e) respiratory diseases: annual influenza surveillance reports (www.gov.uk/government/statistics/annual-flu-reports); weekly flu and COVID-19 surveillance reports (www.gov.uk/government/statistics/national-flu-and-covid-19-surveillance-reports-2021-to-2022-season)

f) sexually transmitted infections: HIV surveillance reports (www.gov.uk/government/statistics/hiv-annual-data-tables); national chlamydia screening programme reports (www.gov.uk/government/statistics/national-chlamydia-screening-programme-ncsp-data-tables); sexually transmitted infections reports (www.gov.uk/government/statistics/sexually-transmitted-infections-stis-annual-data-tables)

g) vaccine safety, efficacy and cost effectiveness: monitoring reports of the effectiveness of COVID-19 vaccination (www.gov.uk/guidance/monitoring-reports-of-the-effectiveness-of-covid-19-vaccination); monitoring reports of influenza and other vaccinations offered under the national immunisation programme (www.gov.uk/government/collections/vaccine-uptake); monitoring reports of the characteristics, diagnosis, management, surveillance and epidemiology of pneumococcal disease (www.gov.uk/government/collections/pneumococcal-disease-guidance-data-and-analysis)

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Maternity Services Data Set (MSDS) V2 Commissioning Extract)

PURPOSE 1 - Vaccination programme: The linked and depersonalised version of the MSDS data is analysed by UKHSA to monitor the uptake and safety of vaccines administered in pregnancy, their effectiveness in preventing hospitalisation and death, and their impact on maternal and child health outcomes.

The results of these analyses are used to generate a range of statistics and reports monitoring the longer term impacts of infections and vaccination on maternal and child health. The results are also used to support UKHSA, NHS England, the wider NHS and scientific advisory committees such as JCVI on the development of vaccination programmes. The findings of the analyses are also submitted for publication in peer reviewed academic journals.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Medicines Dispensed in Primary Care Data Set (NHSBSA) (identifiable)

PURPOSE 1: Antimicrobial resistance: The identifiable NHSBSA data is processed to support the fulfilment of UKHSA’s health protection remit by monitoring the delivery of the UK action plan for antimicrobial resistance (AMR).

The results of this processing are used to generate a range of outputs, such as epidemiological reports, statistical indicators and clinical and operational guidance. Examples of these outputs include: the annual English surveillance programme for antimicrobial utilisation and resistance (ESPAUR) report (www.gov.uk/government/publications/english-surveillance-programme-antimicrobial-utilisation-and-resistance-espaur-report); updates on the AMR national action plan (www.gov.uk/government/publications/uk-5-year-action-plan-for-antimicrobial-resistance-2019-to-2024); and the AMR indicators in the Fingertips open access public health data tool (https://fingertips.phe.org.uk/profile/amr-local-indicators). The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

The audiences for these outputs include UKHSA, DHSC, NHS England, groups such as the Advisory Committee on Antimicrobial Prescribing, Resistance and Healthcare Associated Infection (APRHAI), and healthcare practitioners.

Published outputs will only contain aggregate data and statistics, with small numbers suppressed in accordance with NHSE and ONS guidance. No information that identifies individual patients is published by UKHSA.

NHS 111 Online Data Set and NHS 111 Pathways Data (pseudonymised)

PURPOSE 1 - Health threat surveillance: The NHS 111 Pathways data is processed to support the fulfilment of UKHSA’s health protection remit from the government.

The results of the processing of the Pathways data are used to generate a range of outputs, including forecasting models, real-time situational awareness tools and statistical reports. These outputs are aimed at guiding and supporting timely and effective public health policy decision-making and action to respond to health security hazards by UKHSA, DHSC, the NHS, and other organisations.

The findings of the analyses may also be submitted for publication in peer reviewed academic journals. Published outputs only contain aggregate data and statistics, with small numbers suppressed in accordance with NHSE and ONS guidance. No information that identifies individuals is published by UKHSA.

COVID-19 Therapeutics Eligible Population Data Set (identifiable)

PURPOSE 1 - COVID-19 response: The identifiable COVID-19 Therapeutics Data Set is processed to support the fulfilment of UKHSA’s remit to monitor and manage the delivery, efficacy and safety of immunisation and other infectious disease preventative treatment programmes.

The results of this processing are used to generate a range of outputs, such as epidemiological reports and clinical and operational guidance. These outputs are aimed at advising and supporting the implementation and development of the COVID-19 therapeutics programme by the NHS, as well as the wider government response to COVID-19. The audiences for these outputs include the DHSC COVID-19 Therapeutics Taskforce, government advisory groups such as the New and Emerging Respiratory Virus Threats Advisory Group (NERVTAG), and NHS commissioners and service providers. The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

Published outputs will only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Wherever possible, UKHSA uses aggregate or anonymous data but many of its activities rely on personal data that directly identifies individuals. The reasons for UKHSA using personal data are either to enable direct contact with individuals, for example to provide them with public health advice, or to link together different sources of data to better understand the impacts of infectious diseases and other threats on individual and population health.

Most of the data provided to UKHSA by NHS England is in the form of identifiable data. This data is typically linked to other sources of health protection information that UKHSA itself collects from other sources, such as the infectious diseases notifications that all doctors and laboratories are required to send to UKHSA. The purpose of this linkage is to increase the completeness and value of this public health data to UKHSA.

The benefits of UKHSA using the data provided by NHS England alongside the other sources of data it holds can be grouped under two broad headings:

a) Monitoring infectious diseases and other health threats: The data provided by NHS England is used on a daily basis by UKHSA to support its monitoring of the numbers, trends, risk factors and health impacts of infectious diseases and other external health threats. For example, information from the Hospital Episode Statistics data set is routinely linked to the information UKHSA already separately holds on patients with acute respiratory infection, bloodstream infections, hepatitis C, severe influenza and other infectious diseases. The purpose of this linkage is to augment these records with additional information on the frequency and reasons for hospital admissions among infected patients, the treatments they receive, and their outcomes (such as repeat admissions to hospital or death) that UKHSA would not otherwise have direct access to. These enhanced data sets are analysed and used to produce operational advice and surveillance reports that provide the intelligence needed by UKHSA, government and its advisors, the NHS, other organisations with public health commissioning and service provision responsibilities, and university researchers to better understand the threat to public health presented by infectious diseases, and to inform the planning and provision of prevention and treatment services to reduce the health risks to individuals and populations. An example is the UKHSA Hepatitis C Testing and Treatment Dashboard (www.gov.uk/guidance/hepatitis-c-testing-and-treatment-dashboard). This is regularly updated by UKHSA and monitors hepatitis C prevention, testing, diagnoses and treatment by the NHS to support the World Health Organisation goal of eliminating hepatitis C as a major public health threat by 2030. The intelligence the dashboard provides is in turn used by the NHS to help ensure that appropriate prevention and treatment services are provided to meet the needs of infected patients.

b) Controlling infectious diseases and other health threats: COVID-19 and other infectious diseases present serious threats to individual and population health, both in the UK and internationally. The data provided by NHS England has been used by UKHSA in a range of ways to support its role in responding to COVID-19 as well as other infectious diseases. An example is the COVID-19 antigen test results data, which has been used by UKHSA to estimate the incidence and prevalence of the virus in the population and calculate the R (reproduction) number at national and local levels (which is a measure of how quickly the infection is spreading). This intelligence has been used by UKHSA and expert groups such as SPI-M to inform government decisions on when and for how long to introduce restrictions on people’s movements to reduce the spread of infection. This intelligence has also been used by UKHSA and the NHS to provide advice to members of the public on the actions they need to take to protect themselves and others from infection.

The UK Health Security Agency (UKHSA) is the national expert agency responsible for protecting the nation’s health and a category 1 under the Civil Contingencies Act 2004 (Category 1 responders are those organisations at the core of emergency responses). It is an executive agency of the Department of Health and Social Care (DHSC) and fulfils the statutory health protection duties of the Secretary of State as set out in Section 2A of the NHS Act 2006, as inserted by Section 11 of the Health and Social Care Act 2012. UKHSA was established on 1 April 2021 as part of the government’s plan to transform the UK public health system (www.gov.uk/government/publications/transforming-the-public-health-system/transforming-the-public-health-system-reforming-the-public-health-system-for-the-challenges-of-our-times) and become fully operational on 1 October 2021. It combines the health protection activities previously undertaken by Public Health England (PHE) with all of the activities of NHS Test and Trace and the Joint Biosecurity Centre (JBC). UKHSA’s priorities are set out in its annual remit letter from the government.

UKHSA is responsible for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from communicable diseases and other threats to public health. It is a direct provider of health protection services as well as a processor of data and information for public health purposes that do not involve direct interaction with patients and the public. The successful fulfilment of its remit depends on its ability to process data on the health of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data UKHSA uses it collects directly, but it also depends on timely access to other sources of health data, such as the healthcare activity data collected at a national level by NHS England. This Data Sharing Agreement (DSA) supports the statutory remit of UKHSA by setting out the legal basis and public health justification for sharing specified data sets by NHS England.

UKHSA commits to implement and comply with internal governance controls to ensure that access to the data it processes under this DSA is managed in accordance with data protection legislation, national codes of practice (including the Caldicott principles), national information standards, national assurance frameworks (including the Data Security and Protection Toolkit) and appropriate best practice guidance.

Identifying data is needed to create a COVID-19 reference surveillance and analysis data set, which is then pseudonymised and used for modelling, analysis, surveillance and reporting to inform the response to COVID-19. Identifying data is required to enable linkage to other data sets held by UKHSA, linked data is then pseudonymised before analysis. Identifying data is not used for research purposes. There are dedicated teams within UKHSA who work on projects associated with research and separate teams who work on projects for statutory purposes (as per this DSA). The research teams are aware they must apply for data use under a separate DSA to use NHS England data for research projects.

LEGAL BASIS

The legal bases for UKHSA to process each of the datasets detailed in this DSA vary according to the purpose and may include:

a) UK GDPR Article 6(1)(e) processing is necessary for the performance of a task carried out in the public interest

b) UK GDPR Article 9(2)(i) processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health

c) Data Protection Act Schedule 1 Part 1 (2) health or social care purposes

d) Data Protection Act Schedule 1 Part 1 (3) public health

e) Data Protection Act Schedule 1 Part 1 (4) research

f) Data Protection Act Schedule 1 Part 2 (6) statutory etc. and government purposes

g) Data Protection Act Schedule 1 Part 2 (19) processing for archiving, research and statistical purposes

For most UKHSA purposes, UK GDPR Articles 6(1)(e) and 9(2)(i) and Data Protection Act Schedule 1 Part 1 (3) public health apply.

UKHSA further has approval from the Secretary of State for Health and Social Care to process confidential patient information for a range of health protection purposes under Section 60 of the Health and Social Care Act 2001, as re-enacted by Section 251 of the National Health Service Act 2006, and Regulation 3 of the associated Health Service (Control of Patient Information) Regulations 2002. The purposes permitted under Regulation 3 include:

3(1)(a) diagnosing communicable diseases and other risks to public health

3(1)(b) recognising trends in such diseases and risks

3(1)(c) controlling and preventing the spread of such diseases and risks

3(1)(d) monitoring and managing:

(i) outbreaks of communicable disease

(ii) incidents of exposure to communicable disease

(iii) the delivery, efficacy and safety of immunisation programmes

(iv) adverse reactions to vaccines and medicines

(v) risks of infection acquired from food or the environment (including water supplies)

(vi) the giving of information to persons about the diagnosis of communicable disease and risks of acquiring such disease

Regulation 7(2) of the associated Health Service (Control of Patient Information) Regulations 2002 stipulates that anyone processing confidential patient information under COPI must be a health professional or person who in the circumstances owes a duty of confidentiality which is equivalent to that which would arise if that person were a health professional.

To note, approvals to process confidential patient information under Regulation 3, excepting Regulation 3(4), are not subject to advice from the Health Research Authority’s Confidentiality Advisory Group.

NHS England and UKHSA statutory remits: This DSA recognises the remit of NHS England as set out in the Health and Social Care Act 2012 and the Care Act 2014, and of UKHSA as set out in its annual remit letter from the government (https://www.gov.uk/government/publications/ukhsa-priorities-in-2022-to-2023/letter-from-maggie-throup-to-professor-dame-jenny-harries-ukhsa-chief-executive). It also recognises the specific legal gateways provided to UKHSA under Section 251 of the NHS Act 2006 and Regulation 3 of the Health Service (Control of Patient Information) Regulations 2002 to process confidential patient information. The patient data processed by UKHSA under Regulation 3 has also been granted specific exemption from national data opt outs by the DHSC.

This DSA builds on the previous agreement between NHS England (was NHS Digital) and PHE. The PHE DSA (previous versions of DARS-NIC-343380-H5Q9K) built on the letter from the DHSC sponsors of NHS England (was NHS Digital) and PHE dated 26 January 2015, which confirmed the Department’s support for the exchange of data between the two organisations to support the fulfilment of their respective remits. This UKHSA DSA also builds on the previous agreement between NHS England and the JBC (DARS-NIC-406871-Q9G2Q).

UKHSA is responsible for discharging the statutory health improvement duties of the Secretary of State for Health and Social Care that were previously fulfilled by PHE. In recognition of this organisational succession, this DSA has been amended to change the organisation to UKHSA. The agreement has been amended to enable UKHSA to link updated extracts for the data sets previously disseminated to PHE and which transferred to UKHSA control when PHE closed at the end of September 2021, in order to ensure the continuity of the nationally-important health protection services provided by UKHSA.

JUSTIFICATION FOR REQUESTING CONFIDENTIAL PATIENT INFORMATION

Several data sets containing confidential patient information for the whole of the population of England are disseminated to UKHSA by NHS England under this DSA.

Wherever possible, UKHSA processes data in aggregate or anonymous forms. Where these types of data are not available or not suitable for the end purpose, data sets that have been pseudonymised through the removal of direct patient identifiers such as name, date of birth and NHS Number are used. However, to fulfil many of its health protection responsibilities, UKHSA needs to process confidential patient information that directly identifies individuals. The justifications for it using data in this form are either to enable direct contact with individuals, for example to provide them with urgent public health advice, or to link together different sources of data to better understand the impacts of infectious diseases and other threats on individual and population health.

The confidential patient information provided by NHS England is typically linked to other sources of health protection information that UKHSA collects either directly from individuals, from the providers of health and care services, or from other organisations that support the health and care system in the UK, such as NHS Business Services Authority and the Office for National Statistics. The purpose of this linkage is to increase the completeness and value of these public health data sets to UKHSA in preventing, detecting, analysing and responding to infectious diseases and other threats to individual and population health.

The justification for UKHSA receiving whole population data sets from NHS England, such as the complete Emergency Care, Secondary Uses Service and Hospital Episode Statistics data sets for all patients attending hospitals in England, is to enable the timely and efficient linkage of information on the reasons for admission, the treatments received and patient outcomes to the data UKHSA holds on patients affected by infectious diseases and chemical, environmental and radiological threats to health. Health protection threats can often rapidly emerge and affect large numbers of people. For UKHSA to request access to hospital episodes and spells data specifically for the groups of individuals affected by separate health protection incidents would seriously affect its ability to rapidly assess the threat to individuals and the wider population, and to advise government, the NHS and other organisations on the appropriate response to protect public health.

PROCESSING ARRANGEMENTS AND CONTROLS

UKHSA is a new organisation and working towards integrating the previously separate data storage and processing systems of its sender organisations. While this work is underway, the data sets transferred by NHS England to UKHSA will variously be stored in one of the following two secure data processing systems:

a) the UKHSA Data Lake service, which was previously used to receive the data sets disseminated to PHE

b) the UKHSA EDGE (Environment for Data Gathering and Engineering) service, which was previously used to receive the data sets disseminated to the JBC

Throughout 2024 UKHSA will progressively transfer over the processing of the data disseminated under this DSA from the Data Lake and EDGE services to the new Enterprise Data and Analytics Platform (EDAP). EDAP is an enterprise data management and analytics platform developed by UKHSA to provide a secure, centrally-managed service enabling controlled access to analytic environments and tools that minimise the need for UKHSA scientists, epidemiologists and analysts to directly access confidential patient information. The transition of UKHSA’s data processing activities to EDAP is a complex process that will necessitate a time-limited period during which duplicate copies of the historic data already disseminated by NHS England, as well as updated extracts of the disseminated data sets, will need to be hosted and flow into EDAP at the same time as they are held and received into the Data Lake and EDGE. UKHSA commits to minimising the duration of this period of parallel storage, receipt and processing of the data sets disseminated under this DSA by NHS England .

With specific regard to the Data Lake, this service is currently shared between UKHSA and the DHSC. The DHSC is responsible for the discharge of the statutory health improvement duties of the Secretary of State for Health and Social Care under Section 2B of the NHS Act 2006, as amended by Section 12 of the Health and Social Care Act 2012, that were previously fulfilled by PHE. Authorised DHSC staff are being provided with access to the data sets stored in the Data Lake which they have specific approval to process to ensure that there is no disruption to the continuity of nationally-important health improvement functions following the closure of PHE.

The Data Lake is a shared service but strong controls are in place to ensure that UKHSA and DHSC staff can only access the data sets that are covered by each organisations’ respective separate DSAs with NHS England. The Data Lake is hosted on the UKHSA information technology network, with day-to-day management of the service, including the receipt and basic validation of the data transferred by NHS England, undertaken by staff from DHSC. A memorandum of understanding has been agreed between UKHSA and DHSC to control access to the Data Lake. UKHSA has implemented the following governance controls for the Data Lake:

a) UKHSA staff can only access data in the Data Lake which is specifically covered by the UKHSA DSA with NHS England

b) UKHSA data stored in the Data Lake can only be processed for the purposes specified in the UKHSA DSA

c) UKHSA staff requests to access specific data sets stored in the Data Lake must be made in writing and name the staff for whom access is requested

d) The data access request process assesses the legal basis and the necessity and proportionality of the processing

e) Data access requests require the approval of the information asset owner and the UKHSA Caldicott Guardian or an authorised deputy, who will also ensure compliance with the Caldicott principles

f) Data Lake access is monitored to ensure that UKHSA staff only process the data sets they have approval to use

Comparable governance controls have been implemented by DHSC to manage the access of its staff to the Data Lake.

Other controls implemented by UKHSA to ensure the security and protection of data transferred by NHS England include, but are not limited to:

a) All data shared under this DSA is stored and processed in secure locations in England and Wales.

b) All UKHSA information assets have a named owner who is a director-level employee with responsibility for the overall management of the asset; a suite of corporate data security and protection policies and procedures is in place describing these responsibilities and ensuring that consistent standards are applied to managing the data held in these information assets; UKHSA information assets remain separate and are not joined or linked unless there is a legal basis and public health justification for UKHSA to do so

c) NHS England data is transferred to UKHSA using the NHS England Secure Electronic File Exchange (SEFT) service or Message Exchange for Social Care and Health (MESH) service and then stored in a secure locations on the UKHSA information technology network

DATA SHARING WITH THIRD PARTIES

The bulk of the outputs based on the processing of the data sets disseminated to UKHSA by NHS England are in the form of statistics, reports and guidance that describe the incidence, prevalence, trends, epidemiological characteristics and related information necessary to guide and support the public health actions needed to prevent and control infectious diseases and other threats to public health. Outputs published on the UKHSA website or without restriction elsewhere contain aggregate data and statistics only, with small numbers suppressed in accordance with NHS England and Office for National Statistics (ONS) guidance. No information that identifies individual patients is published by UKHSA.

For some public health purposes, the data disseminated by NHS England may be linked to other data sets controlled by UKHSA to generate reference public health data sets that are used for the surveillance and control of infectious diseases and other public health threats. Data from these linked reference data sets may be shared by UKHSA with third parties in the form of identifiable or de-personalised extracts. Identifiable data is only shared with third parties that have a legal basis to process this form of data, and only the minimum necessary data is shared for the required purpose. All sharing of identifiable or de-personalised data by UKHSA is controlled under written data sharing agreements that contain appropriate data security and protection clauses, including retention and disposal clauses. UKHSA does not share with third parties any extracts of the data sets disseminated by NHS England that have not been linked to other public health data sets controlled by UKHSA. Any requests to access the unlinked data sets, such as the unlinked hospitalisations data disseminated by NHS England, are referred to NHS England by UKHSA.

UKHSA and NHS England also agree that any onwards transfer, either whole or in part, of personal confidential data supplied to UKHSA by NHS England will conform to the same legal constraints that NHS England is subject to. These include the provisions in the Care Act 2014, which stipulate that data may only be disseminated for the purposes of providing health care or adult social care, or supporting the promotion of health.

The National Data Opt Out must be upheld by all health and adult social care organisations, including the UK Health Security Agency (UKHSA). See here for more details on where UKHSA uphold the national data opt-out: https://www.gov.uk/government/publications/accessing-ukhsa-protected-data/approval-standards-and-guidelines-upholding-objections-under-the-national-data-opt-out”

UKHSA must publish the Register of Dissemination within 3 months of signing this Data Sharing Agreement.

OTHER DATA SETS

The majority of the data sets disseminated to UKHSA by NHS England are ‘onboarded’ into the NHS England Data Access Service (DAS) system. In addition, the following data sets, are disseminated to UKHSA:

a) NHS 111/119/999 Pathways Data – a daily extract of identifiable data, from 2020/21 to latest available

b) NHS 111 Repeat Caller Service Data Set – daily extract of pseudonymised data, from 2013/14 M05 to latest available

PROCESSING OBJECTIVES

Specific information regarding the purposes for the processing, the method of processing and the outputs and benefits of the processing for each data set disseminated to UKHSA by NHS England is provided below.

Community Services Data Set (CSDS) (pseudonymised)

PURPOSE 1 – Pseudonymised data transfer to DHSC: The CSDS provides information on the provision of community-based health and care services to infants, children, young people and adults. The pseudonymised data disseminated by NHS England to UKHSA is provided for the sole purpose of onward transfer to the DHSC. This arrangement is necessary to enable DHSC to continue to link updated data extracts to those previously supplied under the former PHE DSA and encrypted using pseudo-identifiers specific to the PHE DSA reference number. This ongoing linkage is possible as the UKHSA DSA reference number is the same as that used for the PHE DSA.

The DHSC purposes for processing the transferred data are as stated in the separate DHSC health improvement DSA DARS-NIC-635697-P0C5M with NHS England. There is no further processing of the data by UKHSA.

Civil Registration (Deaths) Data Set, Covid-19 UK Antibody Testing Results (Pillar 3), Covid-19 UK Non-Hospital Antigen Testing Results (Pillar 2), NHS 111 Online Data Set, NHS 111/119/999 Pathways, and Secondary Uses Service Payment By Results (SUS-PBR) (identifiable)

PURPOSE 1 - COVID-19 response: The Civil Registration (Deaths) data set contains details of the cause of death and basic demographic information for deceased persons. The identifiable data provided by NHS England includes all deaths in England. The identifiable Pillar 2 Testing data set contains information on COVID-19 antigen swab testing conducted at drive-through test centres, mobile testing units, satellite test centres, home testing and care home testing. The identifiable Pillar 3 Testing data set contains information on COVID-19 antibody serology testing. The NHS Online and Pathways data contains information on the assessment, triage and onward referral of callers to the NHS 111/119 service to urgent and emergency care services such as 999 and GP out-of-hours. The identifiable SUS-PBR data contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for planned or urgent care.

UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious disease threats. The Civil Registration (Deaths), Pillar 2 and 3 Testing, NHS Pathways and SUS-PBR data is processed for purposes that support the UKHSA response to COVID-19, including monitoring, modelling, analysing, reporting and advising on the national, regional and local planning and response to the evolving pandemic.

The identifiable Civil Registration (Deaths), Pillar 2 and 3 Testing, NHS Pathways and SUS-PBR data is linked to other public health data sets held by UKHSA, including but not limited to laboratory test results and viral genomic sequencing data, to create a COVID-19 reference surveillance and analysis data set. This reference data set is then depersonalised to protect patient confidentiality and used for surveillance, modelling, analysis and reporting to inform and guide the UKHSA, NHS and wider government response to COVID-19.

Electronic Prescribing and Medicines Administration (EPMA) Data Set (identifiable)

PURPOSE 1: Infectious disease surveillance and control, including the COVID-19 response: The EPMA data set contains information on medicines prescribed and administered to hospital patients in NHS Trusts in England. The identifiable EPMA data provided by NHS England is processed to support the fulfilment of UKHSA’s health protection remit from the government. This includes responsibility for contributing to the ongoing national response to the COVID-19 pandemic by monitoring medicine prescribing practices, particularly antimicrobials and immunomodulatory therapy, and assessing their effectiveness by analysing the impacts on the outcomes of hospital patients with COVID-19 (including those with a preceding, co-infection or secondary infection with an additional respiratory virus, bacterial or fungal pathogen) as well as on patients with infections other than SARS-CoV-2.

The identifiable EPMA is linked to other public health data sets held by UKHSA, including laboratory test results, viral genomic sequencing (to identify variants of concern or variants under investigation), hospital episodes, prescribing, vaccination, and mortality data. The linked data set is then depersonalised to protect patient confidentiality and used for surveillance, modelling, analysis and reporting to inform clinical prescribing practices and wider medicines programmes for COVID-19 and other infectious diseases and conditions.

Emergency Care Data Set (ECDS), NHS 111 Online Dataset and NHS 111 Repeat Caller Service Data Set (pseudonymised)

PURPOSE 1 - Syndromic surveillance: The ECDS data set contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for urgent and emergency care. The pseudonymised data provided by NHS England includes all urgent and emergency care episodes (open and completed) in England.

The NHS 111 Online Dataset and NHS 111 Repeat Caller Service data set contains information on all online contact and calls made to the NHS 111 service by symptomatic patients across England. It includes patient demographic information and information on the symptoms, their severity and the treatment recommended to contacts and callers to the service.

The pseudonymised ECDS and NHS 111 Online data and Repeat Caller Service data provided by NHS England is processed to support the fulfilment of UKHSA’s health protection remit from the government. This includes syndromic surveillance, which involves the collection, analysis and interpretation of health-related data to provide early warning of human or veterinary public health threats that require public health action. The pseudonymised ECDS and NHS 111 data is used for the daily monitoring of the incidence, prevalence and trends in infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution, that have resulted in urgent and emergency hospital episodes and contacts/calls to NHS 111. This forms part of the UKHSA integrated syndromic surveillance system, which is used for monitoring, analysis and reporting at national, regional and local levels to inform and guide the UKHSA, NHS and wider government response to health protection threats.

Health Survey for England (HSE) 2022: Human Biomonitoring Module (pseudonymised)

PURPOSE 1: Environmental hazards monitoring and infectious disease surveillance and control: The HSE is a longstanding annual survey of the health and health-related behaviours of a sample of persons in households in England. It involves a self-completed questionnaire and a series of nurse-administered physical measurements and blood, saliva and urine tests. The HSE is commissioned by NHS England and undertaken by the Joint Health Surveys Unit of NatCen Social Research and the Research Department of Epidemiology and Public Health at University College London. The HSE 2022 incorporates a human biomonitoring module. This has been commissioned by UKHSA and involves the collection of additional health information from approximately 300 HSE participants aged between 16 and 49. It also includes a request for approval to use their residual blood and urine samples for analysing everyday exposure to chemicals and for ethically-approved antibody prevalence studies.

UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious diseases and other threats to public health. The pseudonymised health questionnaire data and residual blood samples from the HSE human biomonitoring module are used by UKHSA for studies that analyse the health risks associated with exposure to chemicals in the air, water, soil, food and consumer products such as skin care products and household cleaning agents. It may also be used for antibody prevalence studies analysing population immunity to diseases of public health importance where a vaccine exists or is in development.

Civil Registration (Deaths) Data Set, Hospital Episode Statistics (HES), Secondary Uses Service Admitted Patient Care (SUS-APC), and Emergency Care Data Set (ECDS) (identifiable and pseudonymised)

PURPOSE 1 - Infectious disease surveillance and control, including the COVID-19 response: The HES, SUS-APC and ECDS data sets contain information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for planned or urgent and emergency care. The Civil Registration (Deaths) data set contains details of the cause of death and basic demographic information for deceased persons. UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious diseases and other threats to public health. The identifiable Civil Registration (Deaths), HES, SUS-APC and ECDS data provided by NHS England includes all deaths and hospital episodes (open and completed) in England and is processed for purposes that support the fulfilment of UKHSA’s health protection remit from the government.

These purposes include, but are not limited to, diagnosing, recognising trends, controlling and preventing, and monitoring and managing:

a) COVID-19: including identifying and responding to cases and outbreaks in community, workplace and healthcare settings; surveillance and modelling of the epidemiology of COVID-19, including monitoring the impact and outcomes of clinical, demographic, ethnic, geographic and socio-economic groups in the population; genomic sequencing and surveillance of COVID-19 variants of interest and concern; monitoring and advising on COVID-19 vaccine safety and effectiveness; implementing and evaluating the Living with COVID plan

b) antimicrobial resistance (AMR): supporting the government’s goal to contain and control AMR through delivery of the UK National Action Plan for AMR, for example through the national surveillance, analysis and reporting of MRSA, MSSA, E.coli bacteraemia, clostridium difficile and other drug resistant infections, streptococcal infections, and antimicrobial usage and resistance and fungal infections

c) healthcare associated infections (HCIA): such as the surveillance, analysis and reporting of blood-borne bacterial infections, fungal infections other pathogens associated with healthcare, and of surgical site infections and infections in critical care units

d) infectious diseases and causative organisms: such as the surveillance, analysis and reporting of hepatitis, HIV and sexually transmitted infections, Monkey Pox, non-tuberculous mycobacteria, shiga toxin-producing E.coli, sepsis, and a range of other notifiable and non-notifiable infectious diseases and causative organisms

e) respiratory diseases: such as the surveillance, analysis and reporting of influenza, respiratory syncytial virus and other respiratory diseases; evaluation of tuberculosis screening programmes

f) sexually transmitted infections: such as the surveillance, analysis and reporting of chlamydia, gonorrhoea and HIV/AIDS; evaluation of the Sexual and Reproductive Health Action Plan for England

g) vaccine safety, efficacy and cost effectiveness: such as the surveillance, analysis and reporting of COVID-19, influenza and other vaccines and antivirals; monitoring the impact of childhood and adult vaccination and immunisation programmes such as the childhood influenza vaccine and pneumococcal vaccines.

The identifiable HES, SUS-APC and ECDS data is processed to remove duplicates and then variously linked to other public health data sets held by UKHSA, including but not limited to laboratory test results, infectious disease reports, viral genomic sequencing, hospitalisation surveillance, vaccination, prescribing, and Civil Registration (Deaths) data, to create a range of reference surveillance and analysis data sets. Many of these other public health data sets, such as infectious disease reports, are often missing important demographic information such as the ethnic group of infected patients, so the identifiable HES, SUS-APC and ECDS data is also processed to provide this missing information. Any future purposes will be within the scope of this Agreement.

These reference public health data sets are then depersonalised where possible to protect patient confidentiality and used for surveillance, analysis and reporting at national, regional and local levels to inform and guide the UKHSA, NHS and wider government response to infectious diseases and other public health threats.

For some health protection purposes, such as identifying and responding to COVID-19 cases and outbreaks in community, workplace and healthcare settings, the processing of patient identifiable data is necessary to enable timely action to be taken to protect public health.

Where identifiable data is not required, for example, to analyse the numbers of hospital admissions and attendances for specific diseases and treatments, only the pseudonymised versions of HES and ECDS are used.

Maternity Services Data Set (MSDS) V2 Commissioning Extract (identifiable)

PURPOSE 1 - Vaccination programme: The MSDS data set contains information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The MSDS V2 Commissioning Extract is an updated and expanded version of the MSDS V1 data set developed by NHS England to support the commissioning and provision of maternal and infant health and care services.

UKHSA’s remit to protect the health of the nation includes responsibility for detecting and responding to infectious diseases, such as COVID-19, influenza and whooping cough (

The outputs are directly related to Regulation 3 of The Health Service (Control of Patient Information) Regulations 2002; particularly:

3(1)(a) diagnosing

3(1)(b) recognising trends

3(1)(c) controlling and preventing

and

3(1)(d) monitoring and managing -

3(1)(d)(i) communicable diseases

and other risks to public health under Section 60 of the Health and Social Care Act 2001, as re-enacted by Section 251 of the National Health Service Act 2006, and Regulation 3 of the associated Health Service (Control of Patient Information) Regulations 2002.

Community Services Data Set (CSDS) (pseudonymised)

PURPOSE 1 – Pseudonymised data transfer to DHSC: The pseudonymised data disseminated by NHS England is provided to UKHSA for the sole purpose of onward transfer to DHSC to process for the purposes agreed in the separate DHSC health improvement DSA with NHS England. There is no further processing of the data by UKHSA.

Civil Registration (Deaths) Data Set, Covid-19 UK Antibody Testing Results (Pillar 3), Covid-19 UK Non-Hospital Antigen Testing Results (Pillar 2), NHS 11 Online Data Set, NHS 111/119/999 Pathways, and Secondary Uses Service Payment By Results (SUS-PBR) (identifiable)

PURPOSE 1 - COVID-19 response: The Civil Registration (Deaths), Pillar 2 and 3 Testing, NHS Online and Pathways and SUS-PBR data provided by NHS England is processed to support the UKHSA response to the COVID-19 pandemic by monitoring and modelling the numbers and trends in the following: deaths caused by or associated with COVID-19; COVID-19 antigen and antibody testing; COVID-19-related treatment referrals; and COVID-19-related hospital spells. The results of the processing are used to generate a range of outputs, such as statistics and reports, and to provide advice and guidance to support timely and effective public health action to respond to the COVID-19 pandemic by UKHSA, the NHS, central and local government, and other organisations.

Examples of these outputs include, but are not limited to, the COVID-19 dashboard (https://coronavirus.data.gov.uk), guidance published for health and social care settings (www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance), and advice and reports provided to the UK Chief Medical Officers and scientific advisory committees such as SPI-M.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Electronic Prescribing and Medicines Administration (EPMA) Data Set (identifiable)

PURPOSE 1: Infectious disease surveillance and control, including the COVID-19 response: The identifiable EPMA data is processed to support the fulfilment of UKHSA’s health protection remit by monitoring the appropriateness, efficacy and equitability of antimicrobial prescribing practices among patients with infectious diseases, including COVID-19, and other diseases and conditions.

The results of this processing are used to generate a range of outputs, such as epidemiological reports and clinical prescribing guidance. These outputs are aimed at advising and supporting the development of prescribing practices for patients with COVID-19 and other diseases and conditions. The audiences for these outputs include NHS clinicians, government advisory groups such as the New and Emerging Respiratory Virus Threats Advisory Group (NERVTAG), and other bodies such as the National Institute for Health and Care Excellence and the Care Quality Commission. The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

Published outputs will only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Emergency Care Data Set (ECDS) NHS 111 Online Data Set and NHS 111 Repeat Caller Service Data Set (pseudonymised)

PURPOSE 1 - Syndromic surveillance: The pseudonymised ECDS and NHS 111 Online data and Repeat Caller Service data provided by NHS England is processed to support the fulfilment of UKHSA’s syndromic surveillance remit from the government. The daily syndromic surveillance service provides a real-time health protection threat monitoring function within UKHSA and the results of the processing of ECDS and NHS 111 data are used to generate a range of outputs, such as statistics, epidemiological reports and guidance.

These outputs are aimed at guiding and supporting timely and effective public health action to respond to infectious diseases and other public health threats by UKHSA, the NHS, central and local government, other public and private organisations, and the general public.

Examples of these outputs include, but are not limited to, the following:

a) weekly syndromic surveillance reports (www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses)

b) ad hoc surveillance outputs supporting the real-time management and sharing of lessons from public health incidents, such as infectious disease outbreaks, heatwaves and floods, such as the UKHSA national study of flooding and health (www.gov.uk/guidance/flooding-and-health-national-study)

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Health Survey for England (HSE) 2022: Human Biomonitoring Module (pseudonymised)

PURPOSE 1: Environmental hazards monitoring and infectious disease surveillance and control: The pseudonymised HSE human biomonitoring module data and residual samples provided by NHS England are processed to support the fulfilment of UKHSA’s health protection remit from the government. The data from the HSE questionnaire responses and samples are analysed and used to generate a range of outputs, such as statistics and epidemiological reports.

These outputs are aimed at strengthening understanding of the risks to public health of everyday exposure to chemicals, and guiding and supporting public health policies and action to reduce the level of harm. The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Civil Registration (Deaths) Data Set, Hospital Episode Statistics (HES), Secondary Uses Service Admitted Patient Care (SUS-APC), and Emergency Care Data Set (ECDS) (identifiable and pseudonymised)

PURPOSE 1 - Infectious disease surveillance and control, including the COVID-19 response: The public health reference data sets generated by UKHSA that include Civil Registration (Deaths), HES, SUS-APC and ECDS data are processed to support the fulfilment of its health protection remit from the government.

The results of this processing are used to generate a range of outputs, such as comparative dashboards, national and official statistics, epidemiological reports, academic publications, clinical and operational guidance, and public guidance. These outputs are aimed at advising, guiding and supporting timely and effective public health action to respond to infectious diseases and other public health threats by UKHSA, the NHS, central and local government, other public and private organisations, and the general public.

Examples of these outputs include, but are not limited to, the following:

a) COVID-19: COVID-19 dashboard (https://coronavirus.data.gov.uk); weekly flu and COVID-19 surveillance reports (www.gov.uk/government/statistics/national-flu-and-covid-19-surveillance-reports-2021-to-2022-season); guidance published for health and social care settings, other non-clinical settings and for the general public (www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance)

b) antimicrobial resistance (AMR): English surveillance programme for antimicrobial utilisation and resistance reports (www.gov.uk/government/publications/english-surveillance-programme-antimicrobial-utilisation-and-resistance-espaur-report); gonococcal resistance to antimicrobials surveillance programme reports (www.gov.uk/government/publications/gonococcal-resistance-to-antimicrobials-surveillance-programme-grasp-report)

c) healthcare associated infections (HCIA): operational guidance and reports for the NHS (www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis); surgical site infection surveillance reports (www.gov.uk/government/collections/surgical-site-infection-ssi-guidance-data-and-analysis); academic publications (eg. Bhattacharya A. et al. Healthcare-associated COVID-19 in England: A national data linkage study. J Infect. 2021 Nov;83(5):565-572. doi: 10.1016/j.jinf.2021.08.039)

d) infectious diseases and causative organisms: annual E.coli reports (www.gov.uk/government/publications/escherichia-coli-e-coli-o157-annual-totals)

e) respiratory diseases: annual influenza surveillance reports (www.gov.uk/government/statistics/annual-flu-reports); weekly flu and COVID-19 surveillance reports (www.gov.uk/government/statistics/national-flu-and-covid-19-surveillance-reports-2021-to-2022-season)

f) sexually transmitted infections: HIV surveillance reports (www.gov.uk/government/statistics/hiv-annual-data-tables); national chlamydia screening programme reports (www.gov.uk/government/statistics/national-chlamydia-screening-programme-ncsp-data-tables); sexually transmitted infections reports (www.gov.uk/government/statistics/sexually-transmitted-infections-stis-annual-data-tables)

g) vaccine safety, efficacy and cost effectiveness: monitoring reports of the effectiveness of COVID-19 vaccination (www.gov.uk/guidance/monitoring-reports-of-the-effectiveness-of-covid-19-vaccination); monitoring reports of influenza and other vaccinations offered under the national immunisation programme (www.gov.uk/government/collections/vaccine-uptake); monitoring reports of the characteristics, diagnosis, management, surveillance and epidemiology of pneumococcal disease (www.gov.uk/government/collections/pneumococcal-disease-guidance-data-and-analysis)

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Maternity Services Data Set (MSDS) V2 Commissioning Extract)

PURPOSE 1 - Vaccination programme: The linked and depersonalised version of the MSDS data is analysed by UKHSA to monitor the uptake and safety of vaccines administered in pregnancy, their effectiveness in preventing hospitalisation and death, and their impact on maternal and child health outcomes.

The results of these analyses are used to generate a range of statistics and reports monitoring the longer term impacts of infections and vaccination on maternal and child health. The results are also used to support UKHSA, NHS England, the wider NHS and scientific advisory committees such as JCVI on the development of vaccination programmes. The findings of the analyses are also submitted for publication in peer reviewed academic journals.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Maternity Services Data Set (MSDS) V2 (pseudonymised)

PURPOSE 1 - Pseudonymised data transfer to DHSC: The identifiable data provided by NHSE is processed by UKHSA to generate a pseudonymised version of the MSDS data for analysis. A copy of this pseudonymised data is transferred to DHSC to be processed for the purposes agreed in the separate DHSC DSA with NHSE.

Medicines Dispensed in Primary Care Data Set (NHSBSA) (identifiable)

PURPOSE 1: Antimicrobial resistance: The identifiable NHSBSA data is processed to support the fulfilment of UKHSA’s health protection remit by monitoring the delivery of the UK action plan for antimicrobial resistance (AMR).

The results of this processing are used to generate a range of outputs, such as epidemiological reports, statistical indicators and clinical and operational guidance. Examples of these outputs include: the annual English surveillance programme for antimicrobial utilisation and resistance (ESPAUR) report (www.gov.uk/government/publications/english-surveillance-programme-antimicrobial-utilisation-and-resistance-espaur-report); updates on the AMR national action plan (www.gov.uk/government/publications/uk-5-year-action-plan-for-antimicrobial-resistance-2019-to-2024); and the AMR indicators in the Fingertips open access public health data tool (https://fingertips.phe.org.uk/profile/amr-local-indicators). The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

The audiences for these outputs include UKHSA, DHSC, NHS England, groups such as the Advisory Committee on Antimicrobial Prescribing, Resistance and Healthcare Associated Infection (APRHAI), and healthcare practitioners.

Published outputs will only contain aggregate data and statistics, with small numbers suppressed in accordance with NHSE and ONS guidance. No information that identifies individual patients is published by UKHSA.

Mental Health Services Data Set (MHSDS) V5.0 (identifiable and pseudonymised)

PURPOSE 1 – Data transfer to DHSC: The data disseminated by NHS England is provided to UKHSA for the sole purpose of onward transfer to DHSC to process for the purposes agreed in the separate DHSC health improvement DSA with NHS England. There is no further processing of the data by UKHSA.

NHS 111 Online Data Set (pseudonymised) and NHS 111/119/999 Pathways Data (identifiable)

PURPOSE 1 - Health threat surveillance: The NHS 111 Pathways data is processed to support the fulfilment of UKHSA’s health protection remit from the government.

The results of the processing of the Pathways data are used to generate a range of outputs, including forecasting models, real-time situational awareness tools and statistical reports. These outputs are aimed at guiding and supporting timely and effective public health policy decision-making and action to respond to health security hazards by UKHSA, DHSC, the NHS, and other organisations.

The findings of the analyses may also be submitted for publication in peer reviewed academic journals. Published outputs only contain aggregate data and statistics, with small numbers suppressed in accordance with NHSE and ONS guidance. No information that identifies individuals is published by UKHSA.

Wherever possible, UKHSA uses aggregate or anonymous data but many of its activities rely on personal data that directly identifies individuals. The reasons for UKHSA using personal data are either to enable direct contact with individuals, for example to provide them with public health advice, or to link together different sources of data to better understand the impacts of infectious diseases and other threats on individual and population health.

Most of the data provided to UKHSA by NHS England is in the form of identifiable data. This data is typically linked to other sources of health protection information that UKHSA itself collects from other sources, such as the infectious diseases notifications that all doctors and laboratories are required to send to UKHSA. The purpose of this linkage is to increase the completeness and value of this public health data to UKHSA.

The benefits of UKHSA using the data provided by NHS England alongside the other sources of data it holds can be grouped under two broad headings:

a) Monitoring infectious diseases and other health threats: The data provided by NHS England is used on a daily basis by UKHSA to support its monitoring of the numbers, trends, risk factors and health impacts of infectious diseases and other external health threats. For example, information from the Hospital Episode Statistics data set is routinely linked to the information UKHSA already separately holds on patients with acute respiratory infection, bloodstream infections, hepatitis C, severe influenza and other infectious diseases. The purpose of this linkage is to augment these records with additional information on the frequency and reasons for hospital admissions among infected patients, the treatments they receive, and their outcomes (such as repeat admissions to hospital or death) that UKHSA would not otherwise have direct access to. These enhanced data sets are analysed and used to produce operational advice and surveillance reports that provide the intelligence needed by UKHSA, government and its advisors, the NHS, other organisations with public health commissioning and service provision responsibilities, and university researchers to better understand the threat to public health presented by infectious diseases, and to inform the planning and provision of prevention and treatment services to reduce the health risks to individuals and populations. An example is the UKHSA Hepatitis C Testing and Treatment Dashboard (www.gov.uk/guidance/hepatitis-c-testing-and-treatment-dashboard). This is regularly updated by UKHSA and monitors hepatitis C prevention, testing, diagnoses and treatment by the NHS to support the World Health Organisation goal of eliminating hepatitis C as a major public health threat by 2030. The intelligence the dashboard provides is in turn used by the NHS to help ensure that appropriate prevention and treatment services are provided to meet the needs of infected patients.

b) Controlling infectious diseases and other health threats: COVID-19 and other infectious diseases present serious threats to individual and population health, both in the UK and internationally. The data provided by NHS England has been used by UKHSA in a range of ways to support its role in responding to COVID-19 as well as other infectious diseases. An example is the COVID-19 antigen test results data, which has been used by UKHSA to estimate the incidence and prevalence of the virus in the population and calculate the R (reproduction) number at national and local levels (which is a measure of how quickly the infection is spreading). This intelligence has been used by UKHSA and expert groups such as SPI-M to inform government decisions on when and for how long to introduce restrictions on people’s movements to reduce the spread of infection. This intelligence has also been used by UKHSA and the NHS to provide advice to members of the public on the actions they need to take to protect themselves and others from infection.

The UK Health Security Agency (UKHSA) is the national expert agency responsible for protecting the nation’s health and a category 1 under the Civil Contingencies Act 2004 (Category 1 responders are those organisations at the core of emergency responses). It is an executive agency of the Department of Health and Social Care (DHSC) and fulfils the statutory health protection duties of the Secretary of State as set out in Section 2A of the NHS Act 2006, as inserted by Section 11 of the Health and Social Care Act 2012. UKHSA was established on 1 April 2021 as part of the government’s plan to transform the UK public health system (www.gov.uk/government/publications/transforming-the-public-health-system/transforming-the-public-health-system-reforming-the-public-health-system-for-the-challenges-of-our-times) and become fully operational on 1 October 2021. It combines the health protection activities previously undertaken by Public Health England (PHE) with all of the activities of NHS Test and Trace and the Joint Biosecurity Centre (JBC). UKHSA’s priorities are set out in its annual remit letter from the government.

UKHSA is responsible for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from communicable diseases and other threats to public health. It is a direct provider of health protection services as well as a processor of data and information for public health purposes that do not involve direct interaction with patients and the public. The successful fulfilment of its remit depends on its ability to process data on the health of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data UKHSA uses it collects directly, but it also depends on timely access to other sources of health data, such as the healthcare activity data collected at a national level by NHS England. This Data Sharing Agreement (DSA) supports the statutory remit of UKHSA by setting out the legal basis and public health justification for sharing specified data sets by NHS England.

UKHSA commits to implement and comply with internal governance controls to ensure that access to the data it processes under this DSA is managed in accordance with data protection legislation, national codes of practice (including the Caldicott principles), national information standards, national assurance frameworks (including the Data Security and Protection Toolkit) and appropriate best practice guidance.

Identifying data is needed to create a COVID-19 reference surveillance and analysis data set, which is then pseudonymised and used for modelling, analysis, surveillance and reporting to inform the response to COVID-19. Identifying data is required to enable linkage to other data sets held by UKHSA, linked data is then pseudonymised before analysis. Identifying data is not used for research purposes. There are dedicated teams within UKHSA who work on projects associated with research and separate teams who work on projects for statutory purposes (as per this DSA). The research teams are aware they must apply for data use under a separate DSA to use NHS England data for research projects.

LEGAL BASIS

The legal bases for UKHSA to process each of the datasets detailed in this DSA vary according to the purpose and may include:

a) UK GDPR Article 6(1)(e) processing is necessary for the performance of a task carried out in the public interest

b) UK GDPR Article 9(2)(i) processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health

c) Data Protection Act Schedule 1 Part 1 (2) health or social care purposes

d) Data Protection Act Schedule 1 Part 1 (3) public health

e) Data Protection Act Schedule 1 Part 1 (4) research

f) Data Protection Act Schedule 1 Part 2 (6) statutory etc. and government purposes

g) Data Protection Act Schedule 1 Part 2 (19) processing for archiving, research and statistical purposes

For most UKHSA purposes, UK GDPR Articles 6(1)(e) and 9(2)(i) and Data Protection Act Schedule 1 Part 1 (3) public health apply.

UKHSA further has approval from the Secretary of State for Health and Social Care to process confidential patient information for a range of health protection purposes under Section 60 of the Health and Social Care Act 2001, as re-enacted by Section 251 of the National Health Service Act 2006, and Regulation 3 of the associated Health Service (Control of Patient Information) Regulations 2002. The purposes permitted under Regulation 3 include:

3(1)(a) diagnosing communicable diseases and other risks to public health

3(1)(b) recognising trends in such diseases and risks

3(1)(c) controlling and preventing the spread of such diseases and risks

3(1)(d) monitoring and managing:

(i) outbreaks of communicable disease

(ii) incidents of exposure to communicable disease

(iii) the delivery, efficacy and safety of immunisation programmes

(iv) adverse reactions to vaccines and medicines

(v) risks of infection acquired from food or the environment (including water supplies)

(vi) the giving of information to persons about the diagnosis of communicable disease and risks of acquiring such disease

To note, approvals to process confidential patient information under Regulation 3, excepting Regulation 3(4), are not subject to advice from the Health Research Authority’s Confidentiality Advisory Group.

NHS England and UKHSA statutory remits: This DSA recognises the remit of NHS England as set out in the Health and Social Care Act 2012 and the Care Act 2014, and of UKHSA as set out in its annual remit letter from the government (https://www.gov.uk/government/publications/ukhsa-priorities-in-2022-to-2023/letter-from-maggie-throup-to-professor-dame-jenny-harries-ukhsa-chief-executive). It also recognises the specific legal gateways provided to UKHSA under Section 251 of the NHS Act 2006 and Regulation 3 of the Health Service (Control of Patient Information) Regulations 2002 to process confidential patient information. The patient data processed by UKHSA under Regulation 3 has also been granted specific exemption from national data opt outs by the DHSC.

This DSA builds on the previous agreement between NHS England (was NHS Digital) and PHE. The PHE DSA (previous versions of DARS-NIC-343380-H5Q9K) built on the letter from the DHSC sponsors of NHS England (was NHS Digital) and PHE dated 26 January 2015, which confirmed the Department’s support for the exchange of data between the two organisations to support the fulfilment of their respective remits. This UKHSA DSA also builds on the previous agreement between NHS England and the JBC (DARS-NIC-406871-Q9G2Q).

UKHSA is responsible for discharging the statutory health improvement duties of the Secretary of State for Health and Social Care that were previously fulfilled by PHE. In recognition of this organisational succession, this DSA has been amended to change the organisation to UKHSA. The agreement has been amended to enable UKHSA to link updated extracts for the data sets previously disseminated to PHE and which transferred to UKHSA control when PHE closed at the end of September 2021, in order to ensure the continuity of the nationally-important health protection services provided by UKHSA.

JUSTIFICATION FOR REQUESTING CONFIDENTIAL PATIENT INFORMATION

Several data sets containing confidential patient information for the whole of the population of England are disseminated to UKHSA by NHS England under this DSA.

Wherever possible, UKHSA processes data in aggregate or anonymous forms. Where these types of data are not available or not suitable for the end purpose, data sets that have been pseudonymised through the removal of direct patient identifiers such as name, date of birth and NHS Number are used. However, to fulfil many of its health protection responsibilities, UKHSA needs to process confidential patient information that directly identifies individuals. The justifications for it using data in this form are either to enable direct contact with individuals, for example to provide them with urgent public health advice, or to link together different sources of data to better understand the impacts of infectious diseases and other threats on individual and population health.

The confidential patient information provided by NHS England is typically linked to other sources of health protection information that UKHSA collects either directly from individuals, from the providers of health and care services, or from other organisations that support the health and care system in the UK, such as NHS Business Services Authority and the Office for National Statistics. The purpose of this linkage is to increase the completeness and value of these public health data sets to UKHSA in preventing, detecting, analysing and responding to infectious diseases and other threats to individual and population health.

The justification for UKHSA receiving whole population data sets from NHS England, such as the complete Emergency Care, Secondary Uses Service and Hospital Episode Statistics data sets for all patients attending hospitals in England, is to enable the timely and efficient linkage of information on the reasons for admission, the treatments received and patient outcomes to the data UKHSA holds on patients affected by infectious diseases and chemical, environmental and radiological threats to health. Health protection threats can often rapidly emerge and affect large numbers of people. For UKHSA to request access to hospital episodes and spells data specifically for the groups of individuals affected by separate health protection incidents would seriously affect its ability to rapidly assess the threat to individuals and the wider population, and to advise government, the NHS and other organisations on the appropriate response to protect public health.

PROCESSING ARRANGEMENTS AND CONTROLS

UKHSA is a new organisation and working towards integrating the previously separate data storage and processing systems of its sender organisations. While this work is underway, the data sets transferred by NHS England to UKHSA will variously be stored in one of the following two secure data processing systems:

a) the UKHSA Data Lake service, which was previously used to receive the data sets disseminated to PHE

b) the UKHSA EDGE (Environment for Data Gathering and Engineering) service, which was previously used to receive the data sets disseminated to the JBC

During 2023/24, UKHSA will progressively transfer over the processing of the data disseminated under this DSA from the Data Lake and EDGE services to the new Enterprise Data and Analytics Platform (EDAP). EDAP is an enterprise data management and analytics platform developed by UKHSA to provide a secure, centrally-managed service enabling controlled access to analytic environments and tools that minimise the need for UKHSA scientists, epidemiologists and analysts to directly access confidential patient information. The transition of UKHSA’s data processing activities to EDAP is a complex process that will necessitate a time-limited period during which duplicate copies of the historic data already disseminated by NHS England, as well as updated extracts of the disseminated data sets, will need to be hosted and flow into EDAP at the same time as they are held and received into the Data Lake and EDGE. UKHSA commits to minimising the duration of this period of parallel storage, receipt and processing of the data sets disseminated under this DSA by NHS England.

With specific regard to the Data Lake, this service is currently shared between UKHSA and the DHSC. The DHSC is responsible for the discharge of the statutory health improvement duties of the Secretary of State for Health and Social Care under Section 2B of the NHS Act 2006, as amended by Section 12 of the Health and Social Care Act 2012, that were previously fulfilled by PHE. Authorised DHSC staff are being provided with access to the data sets stored in the Data Lake which they have specific approval to process to ensure that there is no disruption to the continuity of nationally-important health improvement functions following the closure of PHE.

The Data Lake is a shared service but strong controls are in place to ensure that UKHSA and DHSC staff can only access the data sets that are covered by each organisations’ respective separate DSAs with NHS England. The Data Lake is hosted on the UKHSA information technology network, with day-to-day management of the service, including the receipt and basic validation of the data transferred by NHS England, undertaken by staff from DHSC. A memorandum of understanding has been agreed between UKHSA and DHSC to control access to the Data Lake. UKHSA has implemented the following governance controls for the Data Lake:

a) UKHSA staff can only access data in the Data Lake which is specifically covered by the UKHSA DSA with NHS England

b) UKHSA data stored in the Data Lake can only be processed for the purposes specified in the UKHSA DSA

c) UKHSA staff requests to access specific data sets stored in the Data Lake must be made in writing and name the staff for whom access is requested

d) The data access request process assesses the legal basis and the necessity and proportionality of the processing

e) Data access requests require the approval of the information asset owner and the UKHSA Caldicott Guardian or an authorised deputy, who will also ensure compliance with the Caldicott principles

f) Data Lake access is monitored to ensure that UKHSA staff only process the data sets they have approval to use

Comparable governance controls have been implemented by DHSC to manage the access of its staff to the Data Lake.

Other controls implemented by UKHSA to ensure the security and protection of data transferred by NHS England include, but are not limited to:

a) All data shared under this DSA is stored and processed in secure locations in the UK.

b) All UKHSA information assets have a named owner who is a director-level employee with responsibility for the overall management of the asset; a suite of corporate data security and protection policies and procedures is in place describing these responsibilities and ensuring that consistent standards are applied to managing the data held in these information assets; UKHSA information assets remain separate and are not joined or linked unless there is a legal basis and public health justification for UKHSA to do so

c) NHS England data is transferred to UKHSA using the NHS England Secure Electronic File Exchange (SEFT) service or Message Exchange for Social Care and Health (MESH) service and then stored in a secure locations on the UKHSA information technology network

DATA SHARING WITH THIRD PARTIES

The bulk of the outputs based on the processing of the data sets disseminated to UKHSA by NHS England are in the form of statistics, reports and guidance that describe the incidence, prevalence, trends, epidemiological characteristics and related information necessary to guide and support the public health actions needed to prevent and control infectious diseases and other threats to public health. Outputs published on the UKHSA website or without restriction elsewhere contain aggregate data and statistics only, with small numbers suppressed in accordance with NHS England and Office for National Statistics (ONS) guidance. No information that identifies individual patients is published by UKHSA.

For some public health purposes, the data disseminated by NHS England may be linked to other data sets controlled by UKHSA to generate reference public health data sets that are used for the surveillance and control of infectious diseases and other public health threats. Data from these linked reference data sets may be shared by UKHSA with third parties in the form of identifiable or de-personalised extracts. Identifiable data is only shared with third parties that have a legal basis to process this form of data, and only the minimum necessary data is shared for the required purpose. All sharing of identifiable or de-personalised data by UKHSA is controlled under written data sharing agreements that contain appropriate data security and protection clauses, including retention and disposal clauses. UKHSA does not share with third parties any extracts of the data sets disseminated by NHS England that have not been linked to other public health data sets controlled by UKHSA. Any requests to access the unlinked data sets, such as the unlinked hospitalisations data disseminated by NHS England, are referred to NHS England by UKHSA.

UKHSA and NHS England also agree that any onwards transfer, either whole or in part, of personal confidential data supplied to UKHSA by NHS England will conform to the same legal constraints that NHS England is subject to. These include the provisions in the Care Act 2014, which stipulate that data may only be disseminated for the purposes of providing health care or adult social care, or supporting the promotion of health.

UKHSA must publish the Register of Dissemination within 3 months of signing this Data Sharing Agreement.

OTHER DATA SETS

The majority of the data sets disseminated to UKHSA by NHS England are ‘onboarded’ into the NHS England Data Access Request Service (DARS) system. In addition, the following data sets, are disseminated to UKHSA:

a) NHS 111/119/999 Pathways Data – a daily extract of identifiable data, from 2020/21 to latest available

b) NHS 111 Repeat Caller Service Data Set – daily extract of pseudonymised data, from 2013/14 M05 to latest available

PROCESSING OBJECTIVES

Specific information regarding the purposes for the processing, the method of processing and the outputs and benefits of the processing for each data set disseminated to UKHSA by NHS England is provided below.

Community Services Data Set (CSDS) (pseudonymised)

PURPOSE 1 – Pseudonymised data transfer to DHSC: The CSDS provides information on the provision of community-based health and care services to infants, children, young people and adults. The pseudonymised data disseminated by NHS England to UKHSA is provided for the sole purpose of onward transfer to the DHSC. This arrangement is necessary to enable DHSC to continue to link updated data extracts to those previously supplied under the former PHE DSA and encrypted using pseudo-identifiers specific to the PHE DSA reference number. This ongoing linkage is possible as the UKHSA DSA reference number is the same as that used for the PHE DSA.

The DHSC purposes for processing the transferred data are as stated in the separate DHSC health improvement DSA NIC-635697 with NHS England. There is no further processing of the data by UKHSA.

Civil Registration (Deaths) Data Set, Covid-19 UK Antibody Testing Results (Pillar 3), Covid-19 UK Non-Hospital Antigen Testing Results (Pillar 2), NHS 111 Online Data Set, NHS 111/119/999 Pathways, and Secondary Uses Service Payment By Results (SUS-PBR) (identifiable)

PURPOSE 1 - COVID-19 response: The Civil Registration (Deaths) data set contains details of the cause of death and basic demographic information for deceased persons. The identifiable data provided by NHS England includes all deaths in England. The identifiable Pillar 2 Testing data set contains information on COVID-19 antigen swab testing conducted at drive-through test centres, mobile testing units, satellite test centres, home testing and care home testing. The identifiable Pillar 3 Testing data set contains information on COVID-19 antibody serology testing. The NHS Online and Pathways data contains information on the assessment, triage and onward referral of callers to the NHS 111/119 service to urgent and emergency care services such as 999 and GP out-of-hours. The identifiable SUS-PBR data contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for planned or urgent care.

UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious disease threats. The Civil Registration (Deaths), Pillar 2 and 3 Testing, NHS Pathways and SUS-PBR data is processed for purposes that support the UKHSA response to COVID-19, including monitoring, modelling, analysing, reporting and advising on the national, regional and local planning and response to the evolving pandemic.

The identifiable Civil Registration (Deaths), Pillar 2 and 3 Testing, NHS Pathways and SUS-PBR data is linked to other public health data sets held by UKHSA, including but not limited to laboratory test results and viral genomic sequencing data, to create a COVID-19 reference surveillance and analysis data set. This reference data set is then depersonalised to protect patient confidentiality and used for surveillance, modelling, analysis and reporting to inform and guide the UKHSA, NHS and wider government response to COVID-19.

Electronic Prescribing and Medicines Administration (EPMA) Data Set (identifiable)

PURPOSE 1: Infectious disease surveillance and control, including the COVID-19 response: The EPMA data set contains information on medicines prescribed and administered to hospital patients in NHS Trusts in England. The identifiable EPMA data provided by NHS England is processed to support the fulfilment of UKHSA’s health protection remit from the government. This includes responsibility for contributing to the ongoing national response to the COVID-19 pandemic by monitoring medicine prescribing practices, particularly antimicrobials and immunomodulatory therapy, and assessing their effectiveness by analysing the impacts on the outcomes of hospital patients with COVID-19 (including those with a preceding, co-infection or secondary infection with an additional respiratory virus, bacterial or fungal pathogen) as well as on patients with infections other than SARS-CoV-2.

The identifiable EPMA is linked to other public health data sets held by UKHSA, including laboratory test results, viral genomic sequencing (to identify variants of concern or variants under investigation), hospital episodes, prescribing, vaccination, and mortality data. The linked data set is then depersonalised to protect patient confidentiality and used for surveillance, modelling, analysis and reporting to inform clinical prescribing practices and wider medicines programmes for COVID-19 and other infectious diseases and conditions.

Emergency Care Data Set (ECDS), NHS 111 Online Dataset and NHS 111 Repeat Caller Service Data Set (pseudonymised)

PURPOSE 1 - Syndromic surveillance: The ECDS data set contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for urgent and emergency care. The pseudonymised data provided by NHS England includes all urgent and emergency care episodes (open and completed) in England.

The NHS 111 Online Dataset and NHS 111 Repeat Caller Service data set contains information on all online contact and calls made to the NHS 111 service by symptomatic patients across England. It includes patient demographic information and information on the symptoms, their severity and the treatment recommended to contacts and callers to the service.

The pseudonymised ECDS and NHS 111 Online data and Repeat Caller Service data provided by NHS England is processed to support the fulfilment of UKHSA’s health protection remit from the government. This includes syndromic surveillance, which involves the collection, analysis and interpretation of health-related data to provide early warning of human or veterinary public health threats that require public health action. The pseudonymised ECDS and NHS 111 data is used for the daily monitoring of the incidence, prevalence and trends in infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution, that have resulted in urgent and emergency hospital episodes and contacts/calls to NHS 111. This forms part of the UKHSA integrated syndromic surveillance system, which is used for monitoring, analysis and reporting at national, regional and local levels to inform and guide the UKHSA, NHS and wider government response to health protection threats.

Health Survey for England (HSE) 2022: Human Biomonitoring Module (pseudonymised)

PURPOSE 1: Environmental hazards monitoring and infectious disease surveillance and control: The HSE is a longstanding annual survey of the health and health-related behaviours of a sample of persons in households in England. It involves a self-completed questionnaire and a series of nurse-administered physical measurements and blood, saliva and urine tests. The HSE is commissioned by NHS England and undertaken by the Joint Health Surveys Unit of NatCen Social Research and the Research Department of Epidemiology and Public Health at University College London. The HSE 2022 incorporates a human biomonitoring module. This has been commissioned by UKHSA and involves the collection of additional health information from approximately 300 HSE participants aged between 16 and 49. It also includes a request for approval to use their residual blood and urine samples for analysing everyday exposure to chemicals and for ethically-approved antibody prevalence studies.

UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious diseases and other threats to public health. The pseudonymised health questionnaire data and residual blood samples from the HSE human biomonitoring module are used by UKHSA for studies that analyse the health risks associated with exposure to chemicals in the air, water, soil, food and consumer products such as skin care products and household cleaning agents. It may also be used for antibody prevalence studies analysing population immunity to diseases of public health importance where a vaccine exists or is in development.

Civil Registration (Deaths) Data Set, Hospital Episode Statistics (HES), Secondary Uses Service Admitted Patient Care (SUS-APC), and Emergency Care Data Set (ECDS) (identifiable and pseudonymised)

PURPOSE 1 - Infectious disease surveillance and control, including the COVID-19 response: The HES, SUS-APC and ECDS data sets contain information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for planned or urgent and emergency care. The Civil Registration (Deaths) data set contains details of the cause of death and basic demographic information for deceased persons. UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious diseases and other threats to public health. The identifiable Civil Registration (Deaths), HES, SUS-APC and ECDS data provided by NHS England includes all deaths and hospital episodes (open and completed) in England and is processed for purposes that support the fulfilment of UKHSA’s health protection remit from the government.

These purposes include, but are not limited to, diagnosing, recognising trends, controlling and preventing, and monitoring and managing:

a) COVID-19: including identifying and responding to cases and outbreaks in community, workplace and healthcare settings; surveillance and modelling of the epidemiology of COVID-19, including monitoring the impact and outcomes of clinical, demographic, ethnic, geographic and socio-economic groups in the population; genomic sequencing and surveillance of COVID-19 variants of interest and concern; monitoring and advising on COVID-19 vaccine safety and effectiveness; implementing and evaluating the Living with COVID plan

b) antimicrobial resistance (AMR): supporting the government’s goal to contain and control AMR through delivery of the UK National Action Plan for AMR, for example through the national surveillance, analysis and reporting of MRSA, MSSA, E.coli bacteraemia, clostridium difficile and other drug resistant infections, streptococcal infections, and antimicrobial usage and resistance and fungal infections

c) healthcare associated infections (HCIA): such as the surveillance, analysis and reporting of blood-borne bacterial infections, fungal infections other pathogens associated with healthcare, and of surgical site infections and infections in critical care units

d) infectious diseases and causative organisms: such as the surveillance, analysis and reporting of hepatitis, HIV and sexually transmitted infections, Monkey Pox, non-tuberculous mycobacteria, shiga toxin-producing E.coli, sepsis, and a range of other notifiable and non-notifiable infectious diseases and causative organisms

e) respiratory diseases: such as the surveillance, analysis and reporting of influenza, respiratory syncytial virus and other respiratory diseases; evaluation of tuberculosis screening programmes

f) sexually transmitted infections: such as the surveillance, analysis and reporting of chlamydia, gonorrhoea and HIV/AIDS; evaluation of the Sexual and Reproductive Health Action Plan for England

g) vaccine safety, efficacy and cost effectiveness: such as the surveillance, analysis and reporting of COVID-19, influenza and other vaccines and antivirals; monitoring the impact of childhood and adult vaccination and immunisation programmes such as the childhood influenza vaccine and pneumococcal vaccines.

The identifiable HES, SUS-APC and ECDS data is processed to remove duplicates and then variously linked to other public health data sets held by UKHSA, including but not limited to laboratory test results, infectious disease reports, viral genomic sequencing, hospitalisation surveillance, vaccination, prescribing, and Civil Registration (Deaths) data, to create a range of reference surveillance and analysis data sets. Many of these other public health data sets, such as infectious disease reports, are often missing important demographic information such as the ethnic group of infected patients, so the identifiable HES, SUS-APC and ECDS data is also processed to provide this missing information. Any future purposes will be within the scope of this Agreement.

These reference public health data sets are then depersonalised where possible to protect patient confidentiality and used for surveillance, analysis and reporting at national, regional and local levels to inform and guide the UKHSA, NHS and wider government response to infectious diseases and other public health threats.

For some health protection purposes, such as identifying and responding to COVID-19 cases and outbreaks in community, workplace and healthcare settings, the processing of patient identifiable data is necessary to enable timely action to be taken to protect public health.

Where identifiable data is not required, for example, to analyse the numbers of hospital admissions and attendances for specific diseases and treatments, only the pseudonymised versions of HES and ECDS are used.

Maternity Services Data Set (MSDS) V2 Commissioning Extract (identifiable)

PURPOSE 1 - Vaccination programme: The MSDS data set contains information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The MSDS V2 Commissioning Extract is an updated and expanded version of the MSDS V1 data set developed by NHS England to support the commissioning and provision of maternal and infant health and care services.

UKHSA’s remit to protect the health of the nation includes responsibility for detecting and responding to infectious diseases, such as COVID-19, and monitoring and reporting on the safety and effectiveness of vaccines. The identifiable data provided by NHS England to UKHSA is used to monitor the effectiveness of COVID-19 vaccines in preventing hospital admissions and deaths among pregnant women and infants who have tested positive for SARS-CoV-2.

The identifiable MSDS data is processed to remove duplicates and linked to other data sets held by UKHSA, including laboratory test results, viral genomic sequencing data (to identify variants of concern or variants under investigation), COVID-19 vaccination data and mortality data. The linked data is then depersonalised to protect patient confidentiality and analysed to assess differences by vaccination status in COVID-19-related hospital admissions and deaths among mothers an

The outputs are directly related to Regulation 3 of The Health Service (Control of Patient Information) Regulations 2002; particularly:

3(1)(a) diagnosing

3(1)(b) recognising trends

3(1)(c) controlling and preventing

and

3(1)(d) monitoring and managing -

3(1)(d)(i) communicable diseases

and other risks to public health under Section 60 of the Health and Social Care Act 2001, as re-enacted by Section 251 of the National Health Service Act 2006, and Regulation 3 of the associated Health Service (Control of Patient Information) Regulations 2002.

Community Services Data Set (CSDS) (pseudonymised)

PURPOSE 1 – Pseudonymised data transfer to DHSC: The pseudonymised data disseminated by NHS England is provided to UKHSA for the sole purpose of onward transfer to DHSC to process for the purposes agreed in the separate DHSC health improvement DSA with NHS England. There is no further processing of the data by UKHSA.

Civil Registration (Deaths) Data Set, Covid-19 UK Antibody Testing Results (Pillar 3), Covid-19 UK Non-Hospital Antigen Testing Results (Pillar 2), NHS 11 Online Data Set, NHS 111/119/999 Pathways, and Secondary Uses Service Payment By Results (SUS-PBR) (identifiable)

PURPOSE 1 - COVID-19 response: The Civil Registration (Deaths), Pillar 2 and 3 Testing, NHS Online and Pathways and SUS-PBR data provided by NHS England is processed to support the UKHSA response to the COVID-19 pandemic by monitoring and modelling the numbers and trends in the following: deaths caused by or associated with COVID-19; COVID-19 antigen and antibody testing; COVID-19-related treatment referrals; and COVID-19-related hospital spells. The results of the processing are used to generate a range of outputs, such as statistics and reports, and to provide advice and guidance to support timely and effective public health action to respond to the COVID-19 pandemic by UKHSA, the NHS, central and local government, and other organisations.

Examples of these outputs include, but are not limited to, the COVID-19 dashboard (https://coronavirus.data.gov.uk), guidance published for health and social care settings (www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance), and advice and reports provided to the UK Chief Medical Officers and scientific advisory committees such as SPI-M.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Electronic Prescribing and Medicines Administration (EPMA) Data Set (identifiable)

PURPOSE 1: Infectious disease surveillance and control, including the COVID-19 response: The identifiable EPMA data is processed to support the fulfilment of UKHSA’s health protection remit by monitoring the appropriateness, efficacy and equitability of antimicrobial prescribing practices among patients with infectious diseases, including COVID-19, and other diseases and conditions.

The results of this processing are used to generate a range of outputs, such as epidemiological reports and clinical prescribing guidance. These outputs are aimed at advising and supporting the development of prescribing practices for patients with COVID-19 and other diseases and conditions. The audiences for these outputs include NHS clinicians, government advisory groups such as the New and Emerging Respiratory Virus Threats Advisory Group (NERVTAG), and other bodies such as the National Institute for Health and Care Excellence and the Care Quality Commission. The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

Published outputs will only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Emergency Care Data Set (ECDS) NHS 111 Online Data Set and NHS 111 Repeat Caller Service Data Set (pseudonymised)

PURPOSE 1 - Syndromic surveillance: The pseudonymised ECDS and NHS 111 Online data and Repeat Caller Service data provided by NHS England is processed to support the fulfilment of UKHSA’s syndromic surveillance remit from the government. The daily syndromic surveillance service provides a real-time health protection threat monitoring function within UKHSA and the results of the processing of ECDS and NHS 111 data are used to generate a range of outputs, such as statistics, epidemiological reports and guidance.

These outputs are aimed at guiding and supporting timely and effective public health action to respond to infectious diseases and other public health threats by UKHSA, the NHS, central and local government, other public and private organisations, and the general public.

Examples of these outputs include, but are not limited to, the following:

a) weekly syndromic surveillance reports (www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses)

b) ad hoc surveillance outputs supporting the real-time management and sharing of lessons from public health incidents, such as infectious disease outbreaks, heatwaves and floods, such as the UKHSA national study of flooding and health (www.gov.uk/guidance/flooding-and-health-national-study)

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Health Survey for England (HSE) 2022: Human Biomonitoring Module (pseudonymised)

PURPOSE 1: Environmental hazards monitoring and infectious disease surveillance and control: The pseudonymised HSE human biomonitoring module data and residual samples provided by NHS England are processed to support the fulfilment of UKHSA’s health protection remit from the government. The data from the HSE questionnaire responses and samples are analysed and used to generate a range of outputs, such as statistics and epidemiological reports.

These outputs are aimed at strengthening understanding of the risks to public health of everyday exposure to chemicals, and guiding and supporting public health policies and action to reduce the level of harm. The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Civil Registration (Deaths) Data Set, Hospital Episode Statistics (HES), Secondary Uses Service Admitted Patient Care (SUS-APC), and Emergency Care Data Set (ECDS) (identifiable and pseudonymised)

PURPOSE 1 - Infectious disease surveillance and control, including the COVID-19 response: The public health reference data sets generated by UKHSA that include Civil Registration (Deaths), HES, SUS-APC and ECDS data are processed to support the fulfilment of its health protection remit from the government.

The results of this processing are used to generate a range of outputs, such as comparative dashboards, national and official statistics, epidemiological reports, academic publications, clinical and operational guidance, and public guidance. These outputs are aimed at advising, guiding and supporting timely and effective public health action to respond to infectious diseases and other public health threats by UKHSA, the NHS, central and local government, other public and private organisations, and the general public.

Examples of these outputs include, but are not limited to, the following:

a) COVID-19: COVID-19 dashboard (https://coronavirus.data.gov.uk); weekly flu and COVID-19 surveillance reports (www.gov.uk/government/statistics/national-flu-and-covid-19-surveillance-reports-2021-to-2022-season); guidance published for health and social care settings, other non-clinical settings and for the general public (www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance)

b) antimicrobial resistance (AMR): English surveillance programme for antimicrobial utilisation and resistance reports (www.gov.uk/government/publications/english-surveillance-programme-antimicrobial-utilisation-and-resistance-espaur-report); gonococcal resistance to antimicrobials surveillance programme reports (www.gov.uk/government/publications/gonococcal-resistance-to-antimicrobials-surveillance-programme-grasp-report)

c) healthcare associated infections (HCIA): operational guidance and reports for the NHS (www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis); surgical site infection surveillance reports (www.gov.uk/government/collections/surgical-site-infection-ssi-guidance-data-and-analysis); academic publications (eg. Bhattacharya A. et al. Healthcare-associated COVID-19 in England: A national data linkage study. J Infect. 2021 Nov;83(5):565-572. doi: 10.1016/j.jinf.2021.08.039)

d) infectious diseases and causative organisms: annual E.coli reports (www.gov.uk/government/publications/escherichia-coli-e-coli-o157-annual-totals)

e) respiratory diseases: annual influenza surveillance reports (www.gov.uk/government/statistics/annual-flu-reports); weekly flu and COVID-19 surveillance reports (www.gov.uk/government/statistics/national-flu-and-covid-19-surveillance-reports-2021-to-2022-season)

f) sexually transmitted infections: HIV surveillance reports (www.gov.uk/government/statistics/hiv-annual-data-tables); national chlamydia screening programme reports (www.gov.uk/government/statistics/national-chlamydia-screening-programme-ncsp-data-tables); sexually transmitted infections reports (www.gov.uk/government/statistics/sexually-transmitted-infections-stis-annual-data-tables)

g) vaccine safety, efficacy and cost effectiveness: monitoring reports of the effectiveness of COVID-19 vaccination (www.gov.uk/guidance/monitoring-reports-of-the-effectiveness-of-covid-19-vaccination); monitoring reports of influenza and other vaccinations offered under the national immunisation programme (www.gov.uk/government/collections/vaccine-uptake); monitoring reports of the characteristics, diagnosis, management, surveillance and epidemiology of pneumococcal disease (www.gov.uk/government/collections/pneumococcal-disease-guidance-data-and-analysis)

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Maternity Services Data Set (MSDS) V2 Commissioning Extract)

PURPOSE 1 - Vaccination programme: The linked and depersonalised version of the MSDS data is analysed by UKHSA to monitor the efficacy of COVID-19 vaccines in preventing hospitalisation and death among mothers and infants who have tested positive for SARS-CoV-2.

The results of these analyses are used to generate a range of statistics and reports to advise NHS England on the development of the COVID-19 vaccination programme for mother and infants. The results are also used to support UKHSA, the NHS and scientific advisory committees such as SPI-M in advising the government on the ongoing response to the COVID-19 pandemic, particularly in relation to the vaccination programme but also the longer term impacts of COVID-19 and the vaccines on maternal and child health. The findings of the analyses are also submitted for publication in peer reviewed academic journals.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS England and ONS guidance. No information that identifies individual patients is published by UKHSA.

Maternity Services Data Set (MSDS) V2 (pseudonymised)

PURPOSE 1 - Pseudonymised data transfer to DHSC: The identifiable data provided by NHSE is processed by UKHSA to generate a pseudonymised version of the MSDS data for analysis. A copy of this pseudonymised data is transferred to DHSC to be processed for the purposes agreed in the separate DHSC DSA with NHSE.

Medicines Dispensed in Primary Care Data Set (NHSBSA) (identifiable)

PURPOSE 1: Antimicrobial resistance: The identifiable NHSBSA data is processed to support the fulfilment of UKHSA’s health protection remit by monitoring the delivery of the UK action plan for antimicrobial resistance (AMR).

The results of this processing are used to generate a range of outputs, such as epidemiological reports, statistical indicators and clinical and operational guidance. Examples of these outputs include: the annual English surveillance programme for antimicrobial utilisation and resistance (ESPAUR) report (www.gov.uk/government/publications/english-surveillance-programme-antimicrobial-utilisation-and-resistance-espaur-report); updates on the AMR national action plan (www.gov.uk/government/publications/uk-5-year-action-plan-for-antimicrobial-resistance-2019-to-2024); and the AMR indicators in the Fingertips open access public health data tool (https://fingertips.phe.org.uk/profile/amr-local-indicators). The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

The audiences for these outputs include UKHSA, DHSC, NHS England, groups such as the Advisory Committee on Antimicrobial Prescribing, Resistance and Healthcare Associated Infection (APRHAI), and healthcare practitioners.

Published outputs will only contain aggregate data and statistics, with small numbers suppressed in accordance with NHSE and ONS guidance. No information that identifies individual patients is published by UKHSA.

Mental Health Services Data Set (MHSDS) V5.0 (identifiable and pseudonymised)

PURPOSE 1 – Data transfer to DHSC: The data disseminated by NHS England is provided to UKHSA for the sole purpose of onward transfer to DHSC to process for the purposes agreed in the separate DHSC health improvement DSA with NHS England. There is no further processing of the data by UKHSA.

NHS 111 Online Data Set (pseudonymised) and NHS 111/119/999 Pathways Data (identifiable)

PURPOSE 1 - Health threat surveillance: The NHS 111 Pathways data is processed to support the fulfilment of UKHSA’s health protection remit from the government.

The results of the processing of the Pathways data are used to generate a range of outputs, including forecasting models, real-time situational awareness tools and statistical reports. These outputs are aimed at guiding and supporting timely and effective public health policy decision-making and action to respond to health security hazards by UKHSA, DHSC, the NHS, and other organisations.

The findings of the analyses may also be submitted for publication in peer reviewed academic journals. Published outputs only contain aggregate data and statistics, with small numbers suppressed in accordance with NHSE and ONS guidance. No information that identifies individuals is published by UKHSA.

Wherever possible, UKHSA uses aggregate or anonymous data but many of its activities rely on personal data that directly identifies individuals. The reasons for UKHSA using personal data are either to enable direct contact with individuals, for example to provide them with public health advice, or to link together different sources of data to better understand the impacts of infectious diseases and other threats on individual and population health.

Most of the data provided to UKHSA by NHS England is in the form of identifiable data. This data is typically linked to other sources of health protection information that UKHSA itself collects from other sources, such as the infectious diseases notifications that all doctors and laboratories are required to send to UKHSA. The purpose of this linkage is to increase the completeness and value of this public health data to UKHSA.

The benefits of UKHSA using the data provided by NHS England alongside the other sources of data it holds can be grouped under two broad headings:

a) Monitoring infectious diseases and other health threats: The data provided by NHS England is used on a daily basis by UKHSA to support its monitoring of the numbers, trends, risk factors and health impacts of infectious diseases and other external health threats. For example, information from the Hospital Episode Statistics data set is routinely linked to the information UKHSA already separately holds on patients with acute respiratory infection, bloodstream infections, hepatitis C, severe influenza and other infectious diseases. The purpose of this linkage is to augment these records with additional information on the frequency and reasons for hospital admissions among infected patients, the treatments they receive, and their outcomes (such as repeat admissions to hospital or death) that UKHSA would not otherwise have direct access to. These enhanced data sets are analysed and used to produce operational advice and surveillance reports that provide the intelligence needed by UKHSA, government and its advisors, the NHS, other organisations with public health commissioning and service provision responsibilities, and university researchers to better understand the threat to public health presented by infectious diseases, and to inform the planning and provision of prevention and treatment services to reduce the health risks to individuals and populations. An example is the UKHSA Hepatitis C Testing and Treatment Dashboard (www.gov.uk/guidance/hepatitis-c-testing-and-treatment-dashboard). This is regularly updated by UKHSA and monitors hepatitis C prevention, testing, diagnoses and treatment by the NHS to support the World Health Organisation goal of eliminating hepatitis C as a major public health threat by 2030. The intelligence the dashboard provides is in turn used by the NHS to help ensure that appropriate prevention and treatment services are provided to meet the needs of infected patients.

b) Controlling infectious diseases and other health threats: COVID-19 and other infectious diseases present serious threats to individual and population health, both in the UK and internationally. The data provided by NHS England has been used by UKHSA in a range of ways to support its role in responding to COVID-19 as well as other infectious diseases. An example is the COVID-19 antigen test results data, which has been used by UKHSA to estimate the incidence and prevalence of the virus in the population and calculate the R (reproduction) number at national and local levels (which is a measure of how quickly the infection is spreading). This intelligence has been used by UKHSA and expert groups such as SPI-M to inform government decisions on when and for how long to introduce restrictions on people’s movements to reduce the spread of infection. This intelligence has also been used by UKHSA and the NHS to provide advice to members of the public on the actions they need to take to protect themselves and others from infection.

CONTEXT

The UK Health Security Agency (UKHSA) is the national expert agency responsible for protecting the nation’s health and a category 1 under the Civil Contingencies Act 2004 (Category 1 responders are those organisations at the core of emergency responses). It is an executive agency of the Department of Health and Social Care (DHSC) and fulfils the statutory health protection duties of the Secretary of State as set out in Section 2A of the NHS Act 2006, as inserted by Section 11 of the Health and Social Care Act 2012. UKHSA was established on 1 April 2021 as part of the government’s plan to transform the UK public health system (www.gov.uk/government/publications/transforming-the-public-health-system/transforming-the-public-health-system-reforming-the-public-health-system-for-the-challenges-of-our-times) and become fully operational on 1 October 2021. It combines the health protection activities previously undertaken by Public Health England (PHE) with all of the activities of NHS Test and Trace and the Joint Biosecurity Centre (JBC). UKHSA’s priorities are set out in its annual remit letter from the government.

UKHSA is responsible for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from communicable diseases and other threats to public health. It is a direct provider of health protection services as well as a processor of data and information for public health purposes that do not involve direct interaction with patients and the public. The successful fulfilment of its remit depends on its ability to process data on the health of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data UKHSA uses it collects directly, but it also depends on timely access to other sources of health data, such as the healthcare activity data collected at a national level by NHS Digital. This Data Sharing Agreement (DSA) supports the statutory remit of UKHSA by setting out the legal basis and public health justification for sharing specified data sets by NHS Digital.

UKHSA commits to implement and comply with internal governance controls to ensure that access to the data it processes under this DSA is managed in accordance with data protection legislation, national codes of practice (including the Caldicott principles), national information standards, national assurance frameworks (including the Data Security and Protection Toolkit) and appropriate best practice guidance.

Identifying data is needed to create a COVID-19 reference surveillance and analysis data set, which is then pseudonymised and used for modelling, analysis, surveillance and reporting to inform the response to COVID-19. Identifying data is required to enable linkage to other data sets held by UKHSA, linked data is then pseudonymised before analysis. Identifying data is not used for research purposes.

LEGAL BASIS

The legal bases for UKHSA to process each of the datasets detailed in this DSA vary according to the purpose and may include:

a) UK GDPR Article 6(1)(e) processing is necessary for the performance of a task carried out in the public interest

b) UK GDPR Article 9(2)(i) processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health

c) Data Protection Act Schedule 1 Part 1 (2) health or social care purposes

d) Data Protection Act Schedule 1 Part 1 (3) public health

e) Data Protection Act Schedule 1 Part 1 (4) research

f) Data Protection Act Schedule 1 Part 2 (6) statutory etc. and government purposes

g) Data Protection Act Schedule 1 Part 2 (19) processing for archiving, research and statistical purposes

For most UKHSA purposes, UK GDPR Articles 6(1)(e) and 9(2)(i) and Data Protection Act Schedule 1 Part 1 (3) public health apply.

UKHSA further has approval from the Secretary of State for Health and Social Care to process confidential patient information for a range of health protection purposes under Section 60 of the Health and Social Care Act 2001, as re-enacted by Section 251 of the National Health Service Act 2006, and Regulation 3 of the associated Health Service (Control of Patient Information) Regulations 2002. The purposes permitted under Regulation 3 include:

3(1)(a) diagnosing communicable diseases and other risks to public health

3(1)(b) recognising trends in such diseases and risks

3(1)(c) controlling and preventing the spread of such diseases and risks

3(1)(d) monitoring and managing:

(i) outbreaks of communicable disease

(ii) incidents of exposure to communicable disease

(iii) the delivery, efficacy and safety of immunisation programmes

(iv) adverse reactions to vaccines and medicines

(v) risks of infection acquired from food or the environment (including water supplies)

(vi) the giving of information to persons about the diagnosis of communicable disease and risks of acquiring such disease

To note, approvals to process confidential patient information under Regulation 3, excepting Regulation 3(4), are not subject to advice from the Health Research Authority’s Confidentiality Advisory Group.

NHS Digital and UKHSA statutory remits: This DSA recognises the remit of NHS Digital as set out in the Health and Social Care Act 2012 and the Care Act 2014, and of UKHSA as set out in its annual remit letter from the government (https://www.gov.uk/government/publications/ukhsa-priorities-in-2022-to-2023/letter-from-maggie-throup-to-professor-dame-jenny-harries-ukhsa-chief-executive). It also recognises the specific legal gateways provided to UKHSA under Section 251 of the NHS Act 2006 and Regulation 3 of the Health Service (Control of Patient Information) Regulations 2002 to process confidential patient information. The patient data processed by UKHSA under Regulation 3 has also been granted specific exemption from national data opt outs by the DHSC.

UKHSA sender organisations’ arrangements: This DSA builds on the previous agreement between NHS Digital and PHE. The PHE DSA (previous versions of DARS-NIC-343380-H5Q9K) built on the letter from the DHSC sponsors of NHS Digital and PHE dated 26 January 2015, which confirmed the Department’s support for the exchange of data between the two organisations to support the fulfilment of their respective remits. This UKHSA DSA also builds on the previous agreement between NHS Digital and the JBC (DARS-NIC-406871-Q9G2Q).

UKHSA is responsible for discharging the statutory health improvement duties of the Secretary of State for Health and Social Care that were previously fulfilled by PHE. In recognition of this organisational succession, this DSA has been amended to change the organisation to UKHSA. The agreement has been amended to enable UKHSA to link updated extracts for the data sets previously disseminated to PHE and which transferred to UKHSA control when PHE closed at the end of September 2021, in order to ensure the continuity of the nationally-important health protection services provided by UKHSA.

JUSTIFICATION FOR REQUESTING CONFIDENTIAL PATIENT INFORMATION

Several data sets containing confidential patient information for the whole of the population of England are disseminated to UKHSA by NHS Digital under this DSA.

Wherever possible, UKHSA processes data in aggregate or anonymous forms. Where these types of data are not available or not suitable for the end purpose, data sets that have been pseudonymised through the removal of direct patient identifiers such as name, date of birth and NHS Number are used. However, to fulfil many of its health protection responsibilities, UKHSA needs to process confidential patient information that directly identifies individuals. The justifications for it using data in this form are either to enable direct contact with individuals, for example to provide them with urgent public health advice, or to link together different sources of data to better understand the impacts of infectious diseases and other threats on individual and population health.

The confidential patient information provided by NHS Digital is typically linked to other sources of health protection information that UKHSA collects either directly from individuals, from the providers of health and care services, or from other organisations that support the health and care system in the UK, such as NHS Business Services Authority and the Office for National Statistics. The purpose of this linkage is to increase the completeness and value of these public health data sets to UKHSA in preventing, detecting, analysing and responding to infectious diseases and other threats to individual and population health.

The justification for UKHSA receiving whole population data sets from NHS Digital, such as the complete Emergency Care, Secondary Uses Service and Hospital Episode Statistics data sets for all patients attending hospitals in England, is to enable the timely and efficient linkage of information on the reasons for admission, the treatments received and patient outcomes to the data UKHSA holds on patients affected by infectious diseases and chemical, environmental and radiological threats to health. Health protection threats can often rapidly emerge and affect large numbers of people. For UKHSA to request access to hospital episodes and spells data specifically for the groups of individuals affected by separate health protection incidents would seriously affect its ability to rapidly assess the threat to individuals and the wider population, and to advise government, the NHS and other organisations on the appropriate response to protect public health.

PROCESSING ARRANGEMENTS AND CONTROLS

UKHSA is a new organisation and working towards integrating the previously separate data storage and processing systems of its sender organisations. While this work is underway, the data sets transferred by NHSD Digital to UKHSA will variously be stored in one of the following two secure data processing systems:

a) the UKHSA Data Lake service, which was previously used to receive the data sets disseminated to PHE

b) the UKHSA EDGE (Environment for Data Gathering and Engineering) service, which was previously used to receive the data sets disseminated to the JBC

These two services will be integrated into a single UKHSA data storage and processing system but to ensure operational continuity while this process is underway, the data sets covered by this DSA will variously be transferred into one or both of these systems. An explanation of which system will be used to receive the various data sets disseminated by NHS Digital is provided in section 5b (processing activities) of this DSA.

With specific regard to the Data Lake, this service is currently shared between UKHSA and the DHSC. The DHSC is responsible for the discharge of the statutory health improvement duties of the Secretary of State for Health and Social Care under Section 2B of the NHS Act 2006, as amended by Section 12 of the Health and Social Care Act 2012, that were previously fulfilled by PHE. Authorised DHSC staff are being provided with access to the data sets stored in the Data Lake which they have specific approval to process to ensure that there is no disruption to the continuity of nationally-important health improvement functions following the closure of PHE.

The Data Lake is a shared service but strong controls are in place to ensure that UKHSA and DHSC staff can only access the data sets that are covered by each organisations’ respective separate DSAs with NHS Digital. The Data Lake is hosted on the UKHSA information technology network, with day-to-day management of the service, including the receipt and basic validation of the data transferred by NHS Digital, undertaken by staff from DHSC. A memorandum of understanding has been agreed between UKHSA and DHSC to control access to the Data Lake. UKHSA has implemented the following governance controls for the Data Lake:

a) UKHSA staff can only access data in the Data Lake which is specifically covered by the UKHSA DSA with NHS Digital

b) UKHSA data stored in the Data Lake can only be processed for the purposes specified in the UKHSA DSA

c) UKHSA staff requests to access specific data sets stored in the Data Lake must be made in writing and name the staff for whom access is requested

d) The data access request process assesses the legal basis and the necessity and proportionality of the processing

e) Data access requests require the approval of the information asset owner and the UKHSA Caldicott Guardian or an authorised deputy, who will also ensure compliance with the Caldicott principles

f) Data Lake access is monitored to ensure that UKHSA staff only process the data sets they have approval to use

Comparable governance controls have been implemented by DHSC to manage the access of its staff to the Data Lake.

Other controls implemented by UKHSA to ensure the security and protection of data transferred by NHSD Digital include, but are not limited to:

a) All data shared under this DSA is stored and processed in secure locations in the UK.

b) All UKHSA information assets have a named owner who is a director-level employee with responsibility for the overall management of the asset; a suite of corporate data security and protection policies and procedures is in place describing these responsibilities and ensuring that consistent standards are applied to managing the data held in these information assets; UKHSA information assets remain separate and are not joined or linked unless there is a legal basis and public health justification for UKHSA to do so

c) NHS Digital data is transferred to UKHSA using the NHS Digital Secure Electronic File Exchange (SEFT) service or Message Exchange for Social Care and Health (MESH) service and then stored in a secure locations on the UKHSA information technology network

DATA SHARING WITH THIRD PARTIES

The bulk of the outputs based on the processing of the data sets disseminated to UKHSA by NHS Digital are in the form of statistics, reports and guidance that describe the incidence, prevalence, trends, epidemiological characteristics and related information necessary to guide and support the public health actions needed to prevent and control infectious diseases and other threats to public health. Outputs published on the UKHSA website or without restriction elsewhere contain aggregate data and statistics only, with small numbers suppressed in accordance with NHS Digital and Office for National Statistics (ONS) guidance. No information that identifies individual patients is published by UKHSA.

For some public health purposes, the data disseminated by NHS Digital may be linked to other data sets controlled by UKHSA to generate reference public health data sets that are used for the surveillance and control of infectious diseases and other public health threats. Data from these linked reference data sets may be shared by UKHSA with third parties in the form of identifiable or de-personalised extracts. Identifiable data is only shared with third parties that have a legal basis to process this form of data, and only the minimum necessary data is shared for the required purpose. All sharing of identifiable or de-personalised data by UKHSA is controlled under written data sharing agreements that contain appropriate data security and protection clauses, including retention and disposal clauses. UKHSA does not share with third parties any extracts of the data sets disseminated by NHS Digital that have not been linked to other public health data sets controlled by UKHSA. Any requests to access the unlinked data sets, such as the unlinked hospitalisations data disseminated by NHS Digital, are referred to NHS Digital by UKHSA.

UKHSA and NHS Digital also agree that any onwards transfer, either whole or in part, of personal confidential data supplied to UKHSA by NHS Digital will conform to the same legal constraints that NHS Digital is subject to. These include the provisions in the Care Act 2014, which stipulate that

data may only be disseminated for the purposes of providing health care or adult social care, or supporting the promotion of health.

UKHSA must publish the Register of Dissemination within 3 months of signing this Data Sharing Agreement.

OTHER DATA SETS

The majority of the data sets disseminated to UKHSA by NHS Digital are ‘onboarded’ into the NHS Digital Data Access Request Service (DARS) system. In addition, the following data sets, are disseminated to UKHSA:

a) NHS 111/119/999 Pathways Data – a daily extract of identifiable data, from 2020/21 to latest available

b) NHS 111 Repeat Caller Service Data Set – daily extract of pseudonymised data, from 2013/14 M05 to latest available

PROCESSING OBJECTIVES

Specific information regarding the purposes for the processing, the method of processing and the outputs and benefits of the processing for each data set disseminated to UKHSA by NHS Digital is provided below.

Community Services Data Set (CSDS) (pseudonymised)

PURPOSE 1 – Pseudonymised data transfer to DHSC: The CSDS provides information on the provision of community-based health and care services to infants, children, young people and adults. The pseudonymised data disseminated by NHS Digital to UKHSA is provided for the sole purpose of onward transfer to the DHSC. This arrangement is necessary to enable DHSC to continue to link updated data extracts to those previously supplied under the former PHE DSA and encrypted using pseudo-identifiers specific to the PHE DSA reference number. This ongoing linkage is possible as the UKHSA DSA reference number is the same as that used for the PHE DSA.

The DHSC purposes for processing the transferred data are as stated in the separate DHSC health improvement DSA NIC-635697 with NHS Digital. There is no further processing of the data by UKHSA.

Civil Registration (Deaths) Data Set, Covid-19 UK Antibody Testing Results (Pillar 3), Covid-19 UK Non-Hospital Antigen Testing Results (Pillar 2), NHS 111/119/999 Pathways, and Secondary Uses Service Payment By Results (SUS-PBR) (identifiable)

PURPOSE 1 - COVID-19 response: The Civil Registration (Deaths) data set contains details of the cause of death and basic demographic information for deceased persons. The identifiable data provided by NHS Digital includes all deaths in England. The identifiable Pillar 2 Testing data set contains information on COVID-19 antigen swab testing conducted at drive-through test centres, mobile testing units, satellite test centres, home testing and care home testing. The identifiable Pillar 3 Testing data set contains information on COVID-19 antibody serology testing. The identifiable NHS Pathways data contains information on the assessment, triage and onward referral of callers to the NHS 111/119 service to urgent and emergency care services such as 999 and GP out-of-hours. The identifiable SUS-PBR data contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for planned or urgent care.

UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious disease threats. The Civil Registration (Deaths), Pillar 2 and 3 Testing, NHS Pathways and SUS-PBR data is processed for purposes that support the UKHSA response to COVID-19, including monitoring, modelling, analysing, reporting and advising on the national, regional and local planning and response to the evolving pandemic.

The identifiable Civil Registration (Deaths), Pillar 2 and 3 Testing, NHS Pathways and SUS-PBR data is linked to other public health data sets held by UKHSA, including but not limited to laboratory test results and viral genomic sequencing data, to create a COVID-19 reference surveillance and analysis data set. This reference data set is then depersonalised to protect patient confidentiality and used for surveillance, modelling, analysis and reporting to inform and guide the UKHSA, NHS and wider government response to COVID-19.

Electronic Prescribing and Medicines Administration (EPMA) Data Set (identifiable)

PURPOSE 1: Infectious disease surveillance and control, including the COVID-19 response: The EPMA data set contains information on medicines prescribed and administered to hospital patients in NHS Trusts in England. The identifiable EPMA data provided by NHS Digital is processed to support the fulfilment of UKHSA’s health protection remit from the government. This includes responsibility for contributing to the ongoing national response to the COVID-19 pandemic by monitoring medicine prescribing practices, particularly antimicrobials and immunomodulatory therapy, and assessing their effectiveness by analysing the impacts on the outcomes of hospital patients with COVID-19 (including those with a preceding, co-infection or secondary infection with an additional respiratory virus, bacterial or fungal pathogen) as well as on patients with infections other than SARS-CoV-2.

The identifiable EPMA is linked to other public health data sets held by UKHSA, including laboratory test results, viral genomic sequencing (to identify variants of concern or variants under investigation), hospital episodes, prescribing, vaccination, and mortality data. The linked data set is then depersonalised to protect patient confidentiality and used for surveillance, modelling, analysis and reporting to inform clinical prescribing practices and wider medicines programmes for COVID-19 and other infectious diseases and conditions.

Emergency Care Data Set (ECDS) and NHS 111 Repeat Caller Service Data Set (pseudonymised)

PURPOSE 1 - Syndromic surveillance: The ECDS data set contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for urgent and emergency care. The pseudonymised data provided by NHS Digital includes all urgent and emergency care episodes (open and completed) in England.

The NHS 111 Repeat Caller Service data set contains information on all calls made to the NHS 111 service by symptomatic patients across England. It includes patient demographic information and information on the symptoms, their severity and the treatment recommended to callers to the service.

The pseudonymised ECDS and NHS 111 Repeat Caller Service data provided by NHS Digital is processed to support the fulfilment of UKHSA’s health protection remit from the government. This includes syndromic surveillance, which involves the collection, analysis and interpretation of health-related data to provide early warning of human or veterinary public health threats that require public health action. The pseudonymised ECDS and NHS 111 data is used for the daily monitoring of the incidence, prevalence and trends in infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution, that have resulted in urgent and emergency hospital episodes and calls to NHS 111. This forms part of the UKHSA integrated syndromic surveillance system, which is used for monitoring, analysis and reporting at national, regional and local levels to inform and guide the UKHSA, NHS and wider government response to health protection threats.

Health Survey for England (HSE) 2022: Human Biomonitoring Module (pseudonymised)

PURPOSE 1: Environmental hazards monitoring and infectious disease surveillance and control: The HSE is a longstanding annual survey of the health and health-related behaviours of a sample of persons in households in England. It involves a self-completed questionnaire and a series of nurse-administered physical measurements and blood, saliva and urine tests. The HSE is commissioned by NHS Digital and undertaken by the Joint Health Surveys Unit of NatCen Social Research and the Research Department of Epidemiology and Public Health at University College London. The HSE 2022 incorporates a human biomonitoring module. This has been commissioned by UKHSA and involves the collection of additional health information from approximately 300 HSE participants aged between 16 and 49. It also includes a request for approval to use their residual blood and urine samples for analysing everyday exposure to chemicals and for ethically-approved antibody prevalence studies.

UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious diseases and other threats to public health. The pseudonymised health questionnaire data and residual blood samples from the HSE human biomonitoring module are used by UKHSA for studies that analyse the health risks associated with exposure to chemicals in the air, water, soil, food and consumer products such as skin care products and household cleaning agents. It may also be used for antibody prevalence studies analysing population immunity to diseases of public health importance where a vaccine exists or is in development.

Civil Registration (Deaths) Data Set, Hospital Episode Statistics (HES), Secondary Uses Service Admitted Patient Care (SUS-APC), and Emergency Care Data Set (ECDS) (identifiable and pseudonymised)

PURPOSE 1 - Infectious disease surveillance and control, including the COVID-19 response: The HES, SUS-APC and ECDS data sets contain information on the diagnosis and treatment of patients admitted to or attending NHS hospitals for planned or urgent and emergency care. The Civil Registration (Deaths) data set contains details of the cause of death and basic demographic information for deceased persons. UKHSA’s remit to protect the health of the nation includes responsibility for preventing, detecting, analysing, responding to and leading partnerships to protect the UK from infectious diseases and other threats to public health. The identifiable Civil Registration (Deaths), HES, SUS-APC and ECDS data provided by NHS Digital includes all deaths and hospital episodes (open and completed) in England and is processed for purposes that support the fulfilment of UKHSA’s health protection remit from the government.

These purposes include, but are not limited to, diagnosing, recognising trends, controlling and preventing, and monitoring and managing:

a) COVID-19: including identifying and responding to cases and outbreaks in community, workplace and healthcare settings; surveillance and modelling of the epidemiology of COVID-19, including monitoring the impact and outcomes of clinical, demographic, ethnic, geographic and socio-economic groups in the population; genomic sequencing and surveillance of COVID-19 variants of interest and concern; monitoring and advising on COVID-19 vaccine safety and effectiveness; implementing and evaluating the Living with COVID plan

b) antimicrobial resistance (AMR): supporting the government’s goal to contain and control AMR through delivery of the UK National Action Plan for AMR, for example through the national surveillance, analysis and reporting of MRSA, MSSA, E.coli bacteraemia, clostridium difficile and other drug resistant infections, streptococcal infections, and antimicrobial usage and resistance and fungal infections

c) healthcare associated infections (HCIA): such as the surveillance, analysis and reporting of blood-borne bacterial infections, fungal infections other pathogens associated with healthcare, and of surgical site infections and infections in critical care units

d) infectious diseases and causative organisms: such as the surveillance, analysis and reporting of hepatitis, HIV and sexually transmitted infections, Monkey Pox, non-tuberculous mycobacteria, shiga toxin-producing E.coli, sepsis, and a range of other notifiable and non-notifiable infectious diseases and causative organisms

e) respiratory diseases: such as the surveillance, analysis and reporting of influenza, respiratory syncytial virus and other respiratory diseases; evaluation of tuberculosis screening programmes

f) sexually transmitted infections: such as the surveillance, analysis and reporting of chlamydia, gonorrhoea and HIV/AIDS; evaluation of the Sexual and Reproductive Health Action Plan for England

g) vaccine safety, efficacy and cost effectiveness: such as the surveillance, analysis and reporting of COVID-19, influenza and other vaccines and antivirals; monitoring the impact of childhood and adult vaccination and immunisation programmes such as the childhood influenza vaccine and pneumococcal vaccines.

The identifiable HES, SUS-APC and ECDS data is processed to remove duplicates and then variously linked to other public health data sets held by UKHSA, including but not limited to laboratory test results, infectious disease reports, viral genomic sequencing, hospitalisation surveillance, vaccination, prescribing, and Civil Registration (Deaths) data, to create a range of reference surveillance and analysis data sets. Many of these other public health data sets, such as infectious disease reports, are often missing important demographic information such as the ethnic group of infected patients, so the identifiable HES, SUS-APC and ECDS data is also processed to provide this missing information. Any future purposes will be within the scope of this Agreement.

These reference public health data sets are then depersonalised where possible to protect patient confidentiality and used for surveillance, analysis and reporting at national, regional and local levels to inform and guide the UKHSA, NHS and wider government response to infectious diseases and other public health threats.

For some health protection purposes, such as identifying and responding to COVID-19 cases and outbreaks in community, workplace and healthcare settings, the processing of patient identifiable data is necessary to enable timely action to be taken to protect public health.

Where identifiable data is not required, for example, to analyse the numbers of hospital admissions and attendances for specific diseases and treatments, only the pseudonymised versions of HES and ECDS are used.

Maternity Services Data Set (MSDS) V2 Commissioning Extract (identifiable)

PURPOSE 1 - Vaccination programme: The MSDS data set contains information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The MSDS V2 Commissioning Extract is an updated and expanded version of the MSDS V1 data set developed by NHS Digital to support the commissioning and provision of maternal and infant health and care services.

UKHSA’s remit to protect the health of the nation includes responsibility for detecting and responding to infectious diseases, such as COVID-19, and monitoring and reporting on the safety and effectiveness of vaccines. The identifiable data provided by NHS Digital to UKHSA is used to monitor the effectiveness of COVID-19 vaccines in preventing hospital admissions and deaths among pregnant women and infants who have tested positive for SARS-CoV-2.

The identifiable MSDS data is processed to remove duplicates and linked to other data sets held by UKHSA, including laboratory test results, viral genomic sequencing data (to identify variants of concern or variants under investigation), COVID-19 vaccination data and mortality data. The linked data is then depersonalised to protect patient confidentiality and analysed to assess differences by vaccination status in COVID-19-related hospital admissions and deaths among mothers and their infants. The findings are used to inform and guide the development of the NHS vaccination programme and the government’s wider response to the COVID-19 pandemic.

PURPOSE 2 - Pseudonymised data transfer to DHSC: In the course of processing the identifiable MSDS V2 Commissioning Extract for Purpose 1 described above, UKHSA first processes the identifiable data to remove duplicate record and to link to other data sets. It then generates a pseudonymised version of this linked MSDS data set for analysis. This pseudonymised version is a necessary by-product of the processing of the identifiable MSDS data.

A copy of this pseudonymised data is provided by UKHSA to DHSC to be processed for the purposes agreed in the separate DHSC health improvement DSA with NHS Digital (DARS-NIC-635697-P0C5M). This transfer is necessary because NHS Digital is currently unable to provide a pseudonymised version of the MSDS V2 Commissioning Extract for dissemination directly to DHSC.

Mental Health Services Data Set (MHSDS) V5.0 (pseudonymised)

PURP

The outputs are directly related to Regularion3 of The Health Service (Control of Patient Information) Regulations 2002; particularly:

3(1)(a) diagnosing

3(1)(b) recognising trends

3(1)(c) controlling and preventing

and

3(1)(d) monitoring and managing -

3(1)(d)(i) communicable diseases

and other risks to public health under Section 60 of the Health and Social Care Act 2001, as re-enacted by Section 251 of the National Health Service Act 2006, and Regulation 3 of the associated Health Service (Control of Patient Information) Regulations 2002.

Community Services Data Set (CSDS) (pseudonymised)

PURPOSE 1 – Pseudonymised data transfer to DHSC: The pseudonymised data disseminated by NHS Digital is provided to UKHSA for the sole purpose of onward transfer to DHSC to process for the purposes agreed in the separate DHSC health improvement DSA with NHS Digital. There is no further processing of the data by UKHSA.

Civil Registration (Deaths) Data Set, Covid-19 UK Antibody Testing Results (Pillar 3), Covid-19 UK Non-Hospital Antigen Testing Results (Pillar 2), NHS 111/119/999 Pathways, and Secondary Uses Service Payment By Results (SUS-PBR) (identifiable)

PURPOSE 1 - COVID-19 response: The Civil Registration (Deaths), Pillar 2 and 3 Testing, NHS Pathways and SUS-PBR data provided by NHS Digital is processed to support the UKHSA response to the COVID-19 pandemic by monitoring and modelling the numbers and trends in the following: deaths caused by or associated with COVID-19; COVID-19 antigen and antibody testing; COVID-19-related treatment referrals; and COVID-19-related hospital spells. The results of the processing are used to generate a range of outputs, such as statistics and reports, and to provide advice and guidance to support timely and effective public health action to respond to the COVID-19 pandemic by UKHSA, the NHS, central and local government, and other organisations.

Examples of these outputs include, but are not limited to, the COVID-19 dashboard (https://coronavirus.data.gov.uk), guidance published for health and social care settings (www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance), and advice and reports provided to the UK Chief Medical Officers and scientific advisory committees such as SPI-M.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS Digital and ONS guidance. No information that identifies individual patients is published by UKHSA.

Electronic Prescribing and Medicines Administration (EPMA) Data Set (identifiable)

PURPOSE 1: Infectious disease surveillance and control, including the COVID-19 response: The identifiable EPMA data is processed to support the fulfilment of UKHSA’s health protection remit by monitoring the appropriateness, efficacy and equitability of antimicrobial prescribing practices among patients with infectious diseases, including COVID-19, and other diseases and conditions.

The results of this processing are used to generate a range of outputs, such as epidemiological reports and clinical prescribing guidance. These outputs are aimed at advising and supporting the development of prescribing practices for patients with COVID-19 and other diseases and conditions. The audiences for these outputs include NHS clinicians, government advisory groups such as the New and Emerging Respiratory Virus Threats Advisory Group (NERVTAG), and other bodies such as the National Institute for Health and Care Excellence and the Care Quality Commission. The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

Published outputs will only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS Digital and ONS guidance. No information that identifies individual patients is published by UKHSA.

Emergency Care Data Set (ECDS) and NHS 111 Repeat Caller Service Data Set (pseudonymised)

PURPOSE 1 - Syndromic surveillance: The pseudonymised ECDS and NHS 111 Repeat Caller Service data provided by NHS Digital is processed to support the fulfilment of UKHSA’s syndromic surveillance remit from the government. The daily syndromic surveillance service provides a real-time health protection threat monitoring function within UKHSA and the results of the processing of ECDS and NHS 111 data are used to generate a range of outputs, such as statistics, epidemiological reports and guidance.

These outputs are aimed at guiding and supporting timely and effective public health action to respond to infectious diseases and other public health threats by UKHSA, the NHS, central and local government, other public and private organisations, and the general public.

Examples of these outputs include, but are not limited to, the following:

a) weekly syndromic surveillance reports (www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses)

b) ad hoc surveillance outputs supporting the real-time management and sharing of lessons from public health incidents, such as infectious disease outbreaks, heatwaves and floods, such as the UKHSA national study of flooding and health (www.gov.uk/guidance/flooding-and-health-national-study)

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS Digital and ONS guidance. No information that identifies individual patients is published by UKHSA.

Health Survey for England (HSE) 2022: Human Biomonitoring Module (pseudonymised)

PURPOSE 1: Environmental hazards monitoring and infectious disease surveillance and control: The pseudonymised HSE human biomonitoring module data and residual samples provided by NHS Digital are processed to support the fulfilment of UKHSA’s health protection remit from the government. The data from the HSE questionnaire responses and samples are analysed and used to generate a range of outputs, such as statistics and epidemiological reports.

These outputs are aimed at strengthening understanding of the risks to public health of everyday exposure to chemicals, and guiding and supporting public health policies and action to reduce the level of harm. The findings of the analyses may also be submitted for publication in peer reviewed academic journals.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS Digital and ONS guidance. No information that identifies individual patients is published by UKHSA.

Civil Registration (Deaths) Data Set, Hospital Episode Statistics (HES), Secondary Uses Service Admitted Patient Care (SUS-APC), and Emergency Care Data Set (ECDS) (identifiable and pseudonymised)

PURPOSE 1 - Infectious disease surveillance and control, including the COVID-19 response: The public health reference data sets generated by UKHSA that include Civil Registration (Deaths), HES, SUS-APC and ECDS data are processed to support the fulfilment of its health protection remit from the government.

The results of this processing are used to generate a range of outputs, such as comparative dashboards, national and official statistics, epidemiological reports, academic publications, clinical and operational guidance, and public guidance. These outputs are aimed at advising, guiding and supporting timely and effective public health action to respond to infectious diseases and other public health threats by UKHSA, the NHS, central and local government, other public and private organisations, and the general public.

Examples of these outputs include, but are not limited to, the following:

a) COVID-19: COVID-19 dashboard (https://coronavirus.data.gov.uk); weekly flu and COVID-19 surveillance reports (www.gov.uk/government/statistics/national-flu-and-covid-19-surveillance-reports-2021-to-2022-season); guidance published for health and social care settings, other non-clinical settings and for the general public (www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance)

b) antimicrobial resistance (AMR): English surveillance programme for antimicrobial utilisation and resistance reports (www.gov.uk/government/publications/english-surveillance-programme-antimicrobial-utilisation-and-resistance-espaur-report); gonococcal resistance to antimicrobials surveillance programme reports (www.gov.uk/government/publications/gonococcal-resistance-to-antimicrobials-surveillance-programme-grasp-report)

c) healthcare associated infections (HCIA): operational guidance and reports for the NHS (www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis); surgical site infection surveillance reports (www.gov.uk/government/collections/surgical-site-infection-ssi-guidance-data-and-analysis); academic publications (eg. Bhattacharya A. et al. Healthcare-associated COVID-19 in England: A national data linkage study. J Infect. 2021 Nov;83(5):565-572. doi: 10.1016/j.jinf.2021.08.039)

d) infectious diseases and causative organisms: annual E.coli reports (www.gov.uk/government/publications/escherichia-coli-e-coli-o157-annual-totals)

e) respiratory diseases: annual influenza surveillance reports (www.gov.uk/government/statistics/annual-flu-reports); weekly flu and COVID-19 surveillance reports (www.gov.uk/government/statistics/national-flu-and-covid-19-surveillance-reports-2021-to-2022-season)

f) sexually transmitted infections: HIV surveillance reports (www.gov.uk/government/statistics/hiv-annual-data-tables); national chlamydia screening programme reports (www.gov.uk/government/statistics/national-chlamydia-screening-programme-ncsp-data-tables); sexually transmitted infections reports (www.gov.uk/government/statistics/sexually-transmitted-infections-stis-annual-data-tables)

g) vaccine safety, efficacy and cost effectiveness: monitoring reports of the effectiveness of COVID-19 vaccination (www.gov.uk/guidance/monitoring-reports-of-the-effectiveness-of-covid-19-vaccination); monitoring reports of influenza and other vaccinations offered under the national immunisation programme (www.gov.uk/government/collections/vaccine-uptake); monitoring reports of the characteristics, diagnosis, management, surveillance and epidemiology of pneumococcal disease (www.gov.uk/government/collections/pneumococcal-disease-guidance-data-and-analysis)

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS Digital and ONS guidance. No information that identifies individual patients is published by UKHSA.

Maternity Services Data Set (MSDS) V2 Commissioning Extract)

PURPOSE 1 - Vaccination programme: The linked and depersonalised version of the MSDS data is analysed by UKHSA to monitor the efficacy of COVID-19 vaccines in preventing hospitalisation and death among mothers and infants who have tested positive for SARS-CoV-2.

The results of these analyses are used to generate a range of statistics and reports to advise NHS England on the development of the COVID-19 vaccination programme for mother and infants. The results are also used to support UKHSA, the NHS and scientific advisory committees such as SPI-M in advising the government on the ongoing response to the COVID-19 pandemic, particularly in relation to the vaccination programme but also the longer term impacts of COVID-19 and the vaccines on maternal and child health. The findings of the analyses are also submitted for publication in peer reviewed academic journals.

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS Digital and ONS guidance. No information that identifies individual patients is published by UKHSA.

PURPOSE 2 - Pseudonymised data transfer to DHSC: The identifiable data provided by NHS Digital is processed by UKHSA to generate a pseudonymised version of the MSDS data for analysis. A copy of this pseudonymised data is transferred to DHSC to be processed for the purposes agreed in the separate DHSC DSA with NHS Digital.

Mental Health Services Data Set (MHSDS) V5.0 (pseudonymised)

PURPOSE 1 – Pseudonymised data transfer to DHSC: The pseudonymised data disseminated by NHS Digital is provided to UKHSA for the sole purpose of onward transfer to DHSC to process for the purposes agreed in the separate DHSC health improvement DSA with NHS Digital. There is no further processing of the data by UKHSA.

NHS 111 Online Data Set (pseudonymised)

PURPOSE 1 - COVID-19 response: The pseudonymised NHS 111 Online data provided by NHS Digital is processed in fulfilment of UKHSA’s health protection remit from the government by supporting the syndromic surveillance of COVID-19-related symptoms in the population. The daily syndromic surveillance service provides a real-time health protection threat monitoring function within UKHSA and the results of the processing of NHS 111 data are used to generate a range of outputs, such as statistics and reports.

These outputs are aimed at guiding and supporting timely and effective public health action to respond to the COVID-19 pandemic by UKHSA, the NHS, central and local government, and other organisations. Examples of these outputs include, but are not limited to, the COVID-19 dashboard (https://coronavirus.data.gov.uk) and weekly flu and COVID-19 surveillance reports (www.gov.uk/government/statistics/national-flu-and-covid-19-surveillance-reports-2021-to-2022-season).

Published outputs, such as those released on the UKHSA website, only contain aggregate data and statistics, with small numbers suppressed in accordance with NHS Digital and ONS guidance. No information that identifies individual patients is published by UKHSA.

Wherever possible, UKHSA uses aggregate or anonymous data but many of its activities rely on personal data that directly identifies individuals. The reasons for UKHSA using personal data are either to enable direct contact with individuals, for example to provide them with public health advice, or to link together different sources of data to better understand the impacts of infectious diseases and other threats on individual and population health.

Most of the data provided to UKHSA by NHS Digital is in the form of identifiable data. This data is typically linked to other sources of health protection information that UKHSA itself collects from other sources, such as the infectious diseases notifications that all doctors and laboratories are required to send to UKHSA. The purpose of this linkage is to increase the completeness and value of this public health data to UKHSA.

The benefits of UKHSA using the data provided by NHS Digital alongside the other sources of data it holds can be grouped under two broad headings:

a) Monitoring infectious diseases and other health threats: The data provided by NHS Digital is used on a daily basis by UKHSA to support its monitoring of the numbers, trends, risk factors and health impacts of infectious diseases and other external health threats. For example, information from the Hospital Episode Statistics data set is routinely linked to the information UKHSA already separately holds on patients with acute respiratory infection, bloodstream infections, hepatitis C, severe influenza and other infectious diseases. The purpose of this linkage is to augment these records with additional information on the frequency and reasons for hospital admissions among infected patients, the treatments they receive, and their outcomes (such as repeat admissions to hospital or death) that UKHSA would not otherwise have direct access to. These enhanced data sets are analysed and used to produce operational advice and surveillance reports that provide the intelligence needed by UKHSA, government and its advisors, the NHS, other organisations with public health commissioning and service provision responsibilities, and university researchers to better understand the threat to public health presented by infectious diseases, and to inform the planning and provision of prevention and treatment services to reduce the health risks to individuals and populations. An example is the UKHSA Hepatitis C Testing and Treatment Dashboard (www.gov.uk/guidance/hepatitis-c-testing-and-treatment-dashboard). This is regularly updated by UKHSA and monitors hepatitis C prevention, testing, diagnoses and treatment by the NHS to support the World Health Organisation goal of eliminating hepatitis C as a major public health threat by 2030. The intelligence the dashboard provides is in turn used by the NHS to help ensure that appropriate prevention and treatment services are provided to meet the needs of infected patients.

b) Controlling infectious diseases and other health threats: COVID-19 and other infectious diseases present serious threats to individual and population health, both in the UK and internationally. The data provided by NHS Digital has been used by UKHSA in a range of ways to support its role in responding to COVID-19 as well as other infectious diseases. An example is the COVID-19 antigen test results data, which has been used by UKHSA to estimate the incidence and prevalence of the virus in the population and calculate the R (reproduction) number at national and local levels (which is a measure of how quickly the infection is spreading). This intelligence has been used by UKHSA and expert groups such as SPI-M to inform government decisions on when and for how long to introduce restrictions on people’s movements to reduce the spread of infection. This intelligence has also been used by UKHSA and the NHS to provide advice to members of the public on the actions they need to take to protect themselves and others from infection.

The current version of the Single DSA has not been systematically edited at this stage to remove all references to PHE, but revisions have been made to make clear which data set listed will be processed by which receiver organisation following the PHE closure. The new DSAs with the receiver organisations that in due course will replace the current Single DSA will have all references to PHE removed.

Public Health England (PHE) is the national agency charged with protecting and improving the nation’s health. It is an executive agency of the Department of Health and Social Care (DHSC) and acts on behalf of the Secretary of State to discharge his statutory duties to protect and improve public health in England, and reduce health inequalities, as set out in Sections 2A and 2B of the NHS Act 2006, as inserted by the Health and Social Care Act 2012. These functions and its annual priorities are set out in the remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care (https://www.gov.uk/government/publications/phe-remit-letter-2017-to-2018).

PHE is a direct provider of health protection and health improvement services to patients and the public in England. The successful fulfilment of its remit depends on its ability to process data on the health status of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data it uses it collects directly, but PHE also depends on appropriate and timely access to other sources of health and care data, such as the health status and healthcare provider activity data collected at a national level by NHS Digital.

PHE processes large volumes of data as part of the fulfilment of their remit and function. PHE commits to implement and comply with internal governance arrangements to ensure that access to the data they hold as data controllers, and data controllers in common, is managed in accordance with data protection regulations.

This Data Sharing Agreement (DSA) supports the statutory remit and core functions of PHE by setting out the justifications and legal basis for the sharing of specified data sets by NHS Digital with PHE.

The majority of the datasets shared between the two organisations are detailed in Section 3 of this DSA. Those additional datasets shared which are not contained in Section 3 are detailed below:

NHS 111 Repeat Caller Service Data Set – daily extract of pseudo/anonymised data (from 2013/14 M05 to latest available)

Personal Social Services Survey of Adult Carers in England (PSS- SACE) - biannual extract of pseudo/anonymised data (from 2009/10 to latest available)

Recorded Dementia Diagnoses (RDD) Data Set - annual extract of pseudo/anonymised data (from 2016/17 to latest available)

Secondary Uses Service (SUS+) - monthly extract of data provided by SUS team within NHS Digital.

Note that Daily SUS and Daily Emergency Care Dataset (ECDS) are provided by the NHS Digital’s SUS team, not by the HES Data Production team.

To note, the legal basis for PHE to process each of the datasets is General Data Protection Regulation (GDPR) Article 6(1)e (performance of a task carried out in the public interest or in the exercise of official authority vested in the controller; ) and 9(2)h (the management of the Health and Social Care system and services) and 9(2)i (public health interest). NHS Digital's legal basis to disseminate is Health & Social Care Act 2012- 261(1) other.

Please note, specific information regarding the purposes for each dissemination from NHS Digital to PHE is detailed later in this section.

For clarity, this DSA does not cover transfers of data to support the direct provision of treatment and care services to patients, such as the use by PHE of the National Health Application and Infrastructure Services (NHAIS) managed by NHS Digital to identify patients eligible to be called for screening for bowel, breast and cervical cancer as part of the NHS Cancer Screening Programmes. It also excludes transfers of data from NHS Digital to PHE for research purposes that have been approved through the Data Access Request Service (DARS) and for which individual data sharing agreements are in place.

PHE commits to ensuring that all its processing of data transferred from NHS Digital complies with: the legal framework for data protection and confidentiality; the updated Caldicott principles; other associated guidance, and the information governance assurance framework for health and care organisations codified in the Data Security and Protection Toolkit.

This single DSA differs from the standard NHS Digital data release process; there are a number of reasons for this different arrangement:

- This DSA builds on the letter from the Department of Health and Social Care (DHSC) sponsors of PHE and NHS Digital dated 26th January 2015 confirming the Department’s support for the approach set out herein to the exchange of data between the two organisations in order to support the fulfilment of their respective remits and functions. It also builds on previous Memorandum of Understanding on Data Exchange agreements between PHE and NHS Digital covering the years 2015/16, 2016/17, 2017/18 and the first half of 2018/19.

- This DSA recognises the remit and functions of NHS Digital as set out in the Health & Social Care Act 2012 and the Care Act 2014, and of PHE as set out in its annual remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care. It also recognises the specific legal gateways provided to PHE under Section 60 of the Health & Social Care Act 2001, as re-enacted by Section 251 of the NHS Act 2006 and the associated Health Service (Control of Patient Information) Regulations 2002, to lawfully process confidential patient information. PHE has also been granted specific exemptions from national data opt outs by the Secretary of State in recognition of its national role in protecting and improving public health.

With specific regard to NHS Digital data which has been pseudonymised prior to transfer to PHE, this data is released using NHS Digital powers provided under the Health & Social Care Act 2012. The controls required to ensure the risks of patients being re-identified are minimised and are set out within the overarching NHS Digital Data Sharing Framework Contract signed by PHE.

If PHE require a new dataset from NHS Digital or if the data provided from NHS Digital to PHE is used for purposes that are different from those for which the data was provided in the first instance, PHE will seek permission, via an amendment to this DSA, from NHS Digital before using the data.

Specific information regarding the purposes for processing for each dataset disseminated by NHS Digital to PHE is detailed below:

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (NHS Digital National Cancer Register) The CWT contains information on patients urgently referred for suspected cancer or to be treated for cancer in NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration-and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (including referral waiting times), treatment (including treatment waiting times) and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. The CWT data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand the impact of patient routes to diagnosis and treatment pathways on patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk.

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (NHS Digital National Cancer Register) The DIDS data contains information on the diagnostic imaging tests, such as x-rays and MRI scans, carried out on cancer patients treated in NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration- and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (such as DIDS), treatment and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. This linked data is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

Hospital Episodes Statistics (HES)

PURPOSE 1: (NHS Digital National Cancer Register) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these patients. The HES data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 2: (UKHSA Health protection work programme and DHSC COVID-19 work programme). The patient identifiable HES data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness

g) monitoring and surveillance of the wider public health impacts of COVID-19.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. HES is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 3: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The patient identifiable HES data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register

(https://www.gov.uk/guidance/the-national-congenital- anomaly-and-rare-disease-registration-service-ncardrs). PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these individuals.

PURPOSE 4: (DHSC Drug and Alcohol work programme) The patient identifiable HES data provided by NHS Digital is linked to the information collected by Local Authority-commissioned providers of drug and alcohol treatment services as part of the Individual Placement and Support (IPS) programme. IPS involves the provision of enhanced support to the clients of substance misuse services to help them find employment. Participation in IPS is voluntary and the written agreement of service users is obtained for information about the IPS support they receive to be shared with PHE, and for this information to be linked by PHE to other data sets, including hospital admissions records and the information held in the PHE National Drug Treatment Monitoring System (NDTMS). The purpose for the linkage is to undertake research into the effectiveness of IPS in reducing the health harms associated with substance misuse.

PURPOSE 5: (UKHSA Health protection work programme and DHSC COVID-19 work programme) The patient identifiable HES data provided by NHS Digital is linked to the national data sets collected and managed by UKHSA on cases of communicable disease. These data sets, which include the statutory notifications of infectious diseases that all registered medical practitioners must report to UKHSA, are used by the national and local public health system in England for the purposes of diagnosing, controlling, preventing, monitoring and managing health protection incidents and outbreaks. Communicable disease reports are often missing the ethnic group of the infected patient, so the information on ethnicity recorded in HES is used by UKHSA to provide this missing demographic information. The COVID-19 pandemic has highlighted the importance of analysing communicable disease infection rates by ethnic group, so the resulting linked data is used to strengthen the UKHSA surveillance of communicable disease incidence, prevalence and outcomes across different groups. For example, the linked data is processed by the hepatitis surveillance work programme to provide more accurate statistics on infection rates across ethnic groups, and to inform policies on testing for blood borne viruses and the targeting of prevention and control measures at ethnic groups with higher infection rates and the poorest outcomes.

Linked HES & Civil Registry Deaths

PURPOSE 1: (DHSC End of life care work programme) The linked HES/Mortality data contains hospital admissions data and mortality records but no information that could be used to directly identify individual patients is provided to PHE. The data is used by PHE to undertake a range of analyses of the health status and care received by individuals at the end of their lives. It is also used to analyse the place of death and determine whether the care provided beforehand was in a hospital, a residential or nursing establishment, or at home.

PURPOSE 2: (DHSC Health Check) The linked pseudonymised HES APC and Civil Registrations (Deaths) – Summary Care Record data set for the period 01/04/2009 - 31/03/2018 will be used to fulfil the third stage of PHE’s analysis strategy to estimate the impact of NHS Health Check attendance on health outcomes. The Primary Care data set ‘NHS Health Checks’ was collected by NHS Digital under Direction on behalf of PHE, and initial analysis was conducted under DARS-NIC-201243-R7L2M.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The PCMD data provided by NHS Digital to PHE details the cause of death but includes no information that could be used to directly identify individual patients. The data is used by PHE to produce a range of statistics on cause-specific death for different demographic groups and geographic areas. These analyses are undertaken on a routine basis by PHE to support its long-term surveillance of non-communicable diseases and to support the work of local public health teams in the discharge of the statutory health improvement duty of Local Authorities.

Secondary Use Service (SUS)

PURPOSE 1: (NHS Digital National Cancer Register) SUS data is essentially an earlier, less ‘clean’ version of the HES data described above (for example, not all duplicate records have been removed) and contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. Data is only provided by NHS Digital for patients with a cancer-related ICD-10 diagnosis code.

Community Services Data Set

PURPOSE: (DHSC Healthy Lifecourse work programme) The CSDS provides information on the provision of community-based health and care services to infants, children, young people and adults. It collects data on: patient demographics, such as age, sex, address and GP registration; referrals to community, mental health and social care services; infant and childhood health screening tests and immunisations; special educational needs, child protection and safeguarding assessments; and other information about community-based services. The pseudonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in the proportions of infants and children reaching developmental milestones, and to analyse the links between child health and educational attainment. It is also used to monitor the use of community-based health and care services, and to produce a range of intelligence outputs to support the commissioning and monitoring of outcomes for community-based services. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities. The data provided by NHS Digital includes a pseudoID to enable the pseudonymised linkage by PHE of the CSDS records for infants and children to the corresponding record of their mothers from the Maternity Services Data Set (MSDS).

Emergency Care Data Set

PURPOSE 1: (DHSC Injury prevention and mental health work programmes) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the monitoring of the numbers and trends in patients attending hospital with injuries, particularly violence-related injuries, and because to self-harm. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including delivering the NHS Five Year Forward View for Mental Health and the National Crisis Care Concordat.

PURPOSE 2: (UKHSA Syndromic surveillance programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its wider duty to protect the nation’s health by providing a national integrated syndromic surveillance system.

PURPOSE 3: (NHS Digital National Cancer Register) The identifiable patient ECDS data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as ECDS) and outcomes of these patients. The ECDS data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 4: (UKHSA Health protection work programme) The patient identifiable ECDS data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. ECDS is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 5: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The patient identifiable ECDS data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register. PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as ECDS) and outcomes of these individuals. The ECDS data linked to CARD registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different rare diseases, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 6: (DHSC Drug and Alcohol work programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. One limitation of the ECDS is that it does not record detailed information on the location at which physical assaults leading to an ED attendance occur which is needed to support local violence reduction strategies. The Data Coordination Board has approved the inclusion of a new Assault_Location_Description field in ECDS to enable this free-text information to be recorded by a sample of EDs engaged in the pilot relating to this new field (DCB0092-2062 And 19/2020, ISN change specification publication date 10-Sep-2020). This pilot is being led by PHE, which will process the anonymised data provided by NHS Digital to assess the utility of the new ECDS field for supporting targeted public health interventions, and make recommendations to NHS England on whether to require the provision of this information in ECDS by all EDs. The following subset of data items provided from the pre-existing pseudonymised ECDS provided to PHE by NHS Digital will be processed by staff from the PHE Drug and Alcohol work programme for the purpose of this pilot:

1. AGE_AT_ARRIVAL

2. AGE_RANGE

3. ARRIVAL_DATE

4. ARRIVAL_MODE

5. ARRIVAL_TIME

6. ASSAULT_LOCATION_DESCRIPTION

7. CHIEF_COMPLAINT_IS_INJURY_RELATED

8. ED_COUNTY_CODE

9. ED_DISTRICT_CODE

10. ETHNIC_CATEGORY

11. ETHNIC_CATEGORY_Description

12. INJURY_ACTIVITY_STATUS

13. INJURY_ACTIVITY_TYPE

14. INJURY_ACTIVITY_TYPE_Description

15. INJURY_DATE

16. INJURY_INTENT (+description)

17. INJURY_MECHANISM (+description)

18. INJURY_TIME

19. LSOA_2011

20. PATIENT_POSTCODE_DISTRICT

21. PLACE_OF_INJURY (+description)

22. SEX

Health Survey for England (HSE)

PURPOSE: (DHSC Healthy lifestyles work programme) The HSE is a longstanding annual survey of the health and lifestyles of a sample of around 8,000 adults and 2,000 children. The HSE is carried out by NatCen Social Research on behalf of NHS Digital. The HSE data, which has been anonymised, has been published for several years on the UK Data Archive, although additional restrictions have recently been applied to this by NHS Digital to further reduce the risk of any of sample participants being identified. PHE commissioned a boost to the number of children included in the 2015 HSE and requires access to more detailed data on children in households than that ordinarily published by NHS Digital via the UK Data Archive.

Separately, PHE also requires access to a more detailed combined set of HSE data bringing together the responses to the questions on adult gambling behaviours from the 2012, 2015, 2016 and 2018 surveys than is ordinarily published by NHS Digital via the UK Data Archive.

Hospital Episode Statistics (HES)

PURPOSE 1: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of a wide range of conditions such as heart disease and stroke, mental health and respiratory disease.

PURPOSE 2: (UKHSA Health protection work programme) The HES data contains information on the numbers of maternity admissions to NHS hospitals for Covid-19 and related conditions. The HES data, which has been anonymised and provided by NHS Digital to UKHSA, is used to validate the numbers of maternity admissions identified through the processing of the more-timely SUS APC data set. Comparison of the numbers of admissions identified through separate analyses of HES and SUS APC has identified a c.10% difference. A list of the SUSSPELLIDs identified from HES is compared to the list derived from the separate analysis of SUS APC to clarify whether the difference is due to the more timely but less complete nature of SUS APC, or to methodological differences between the two sets of analyses, or to some combination of these two factors. The results of this comparison are used to refine the methodology developed to identify maternal admissions from SUS APC, which is used to support the near-real-time modelling and planning for Covid-19 and related hospital pressure and risk management by UKHSA. To note, the analysis of the SUS APC data is undertaken by a team from the former Joint Biosecurity Centre under the DSA separately agreed by JBC and NHS Digital (DARS-NIC-406871-Q9G2Q). Only the SUSSPELLIDs are shared by the (former) PHE (now UKHSA) team carrying out the analysis of HES with the (former) JBC team (now UKHSA) carrying out the analysis of SUS.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (DHSC Mental health work programme) The IAPT data set provides information on access to and outcomes for adults being treated by psychological therapy services across England. It includes patient demographic information and information on referrals to psychological therapy services, mental health assessments and the treatment provided to patients. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence and prevalence of mental health problems such as anxiety disorders and depression. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health, including delivering the NHS Five Year Forward View for Mental Health.

Maternity Services Data Set (MSDSv1)

PURPOSE: (DHSC Healthy Lifecourse work programme) The MSDS provides information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The pseudonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in maternal health, the use of obstetric and antenatal services, and child health outcomes. The results of these analyses are used to produce a range of health intelligence outputs to support the commissioning and monitoring of outcomes for maternity services. The data is also used to monitor progress in achieving the Secretary of State’s ambition to halve the number of stillbirths, neonatal and maternal deaths and brain injuries by 2030, and to monitor progress in implementing national initiatives such as the Maternity Transformation Programme. The data provided by NHS Digital includes a pseudoID to enable the pseudonymised linkage by PHE of the MSDS records of mothers to the corresponding records of their infants and children from the Community Services Data Set (CSDS). This linked data is used by PHE to analyse the impacts of maternal health and care in pregnancy with the health and developmental outcomes for their children.

Maternity Services Data Set (MSDS V2 Commissioning Extract)

PURPOSE 1: (UKHSA Health protection work programme) The MSDS V2 Commissioning Extract is an updated and expanded version of the MSDS V1 data set developed by NHS Digital to support the commissioning and provision of maternal and infant health and care services. The identifiable data provided by NHSD to UKHSA is used to monitor the effectiveness of COVID-19 vaccines in preventing hospital admissions and deaths among pregnant women and infants who have tested positive for SARS-CoV-2. This work forms part of the wider UKHSA vaccine safety and efficacy work programme – which is a core component of the UKHSA remit from the DHSC – as well as the UKHSA response to the COVID-19 pandemic. The results of the analyses of the MSDS data are used by UKHSA to analyse differences by vaccination status in COVID-19-related hospital admissions and deaths among mothers and their infants. The findings are used to advise the development of the NHS vaccination programme and the government’s ongoing response to the COVID-19 pandemic.

PURPOSE 2: (DHSC Healthy lifestyle work programme) In the course of processing the identifiable MSDS V2 Commissioning Extract for the purpose described above (MSDS V2 Commissioning Extract PURPOSE 1), UKHSA first processes the identifiable data to link to other data sets and to ensure that duplicates are removed. It then generates a pseudonymised version of this linked MSDS data set for analysis. This pseudonymised version is a necessary ‘by product’ of the processing of the identifiable MSDS data and a copy of this pseudonymised data will be provided by UKHSA on behalf of NHS Digital to DHSC to be processed in support of its healthy lifestyle work programme. This transfer is necessary because NHS Digital is unable currently to provide a pseudonymised version of the MSDS V2 Commissioning Extract for dissemination directly to DHSC. The DHSC purposes for processing this pseudonymised copy of the MSDS data are the same as for the pseudonymised MSDS V1 data previously supplied to PHE. These purposes are described in full elsewhere in this DSA (MSDS V1 PURPOSE) but in summary, the data is used to monitor numbers and trends in maternal health, use of obstetric and antenatal services, and child health outcomes, and to generate a range of health intelligence outputs to support the commissioning and monitoring of outcomes for maternity services.

Mental Health Services Data Set (MHSDS)

PURPOSE: (DHSC Mental health work programme) The MHSDS contains information on the diagnosis and treatment of patient

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (NHS Digital National Cancer Register) The CWT data linked to cancer registration records is used by PHE to analyse trends in the number of urgent referrals for suspected cancer and resulting diagnoses to understand the effectiveness of this referral route for improving patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the Cancer Services tool at https://fingertips.phe.org.uk/profile/cancerservices.

The findings derived from the linked CWT and cancer registration data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the NHS England National Cancer Strategy Implementation Plan (https://www.england.nhs.uk/cancer/strategy).

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (NHS Digital National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

Hospital Episodes Statistics (HES)

PURPOSE 1: (NHS Digital National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 2: (UKHSA Health protection work programme and DHSC COVID-19 work programme) The findings derived from the linked HES data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections (including COVID-19), the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis

and the vaccination information at

https://www.gov.uk/government/collections/vaccine-uptake and the COVID-19 dashboards at https://coronavirus.data.gov.uk.

PURPOSE 3: (NHS Digital National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network

(http://www.eurocat-network.eu/).

The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

PURPOSE 4: (DHSC Drug and Alcohol work programme) The findings derived from the linked HES data primarily are used to undertake research into the effectiveness of the IPS programme in supporting drug and alcohol treatment service users into employment, and in reducing the health harms and criminal activity associated with substance misuse. The results of the analyses of the linked data will be published in a report to the DHSC and Local Authorities and papers submitted to academic journals to inform and guide the future planning and commissioning of effective local drug and alcohol treatment services across England.

PURPOSE 5: (UKHSA Health protection work programme) The outcomes of analyses based on the enrichment of UKHSA communicable disease data sets with ethnic group information derived from linkage to HES are used to inform public health action to reduce these threats to public health. For example, the results are used to direct front-line prevention and control measures, are published in the form of aggregate statistics and tables in communicable disease surveillance reports, and are used to inform the development of national health protection policy.

Linked HES & Civil Registry Deaths

PURPOSE1: (DHSC End of life care work programme) The results of the analyses undertaken by PHE are published in the End of Life Care Profiles at

https://fingertips.phe.org.uk/.

These profiles are provided by Local Authority and Clinical Commissioning Group and are used to support local health and social care commissioning, for example by providing statistics on the place of death and nursing and care home bed rates.

PURPOSE 2: (DHSC NHS Health Check) The result of these analyses undertaken by PHE will determine the efficacy of the NHS Health Check Programme and important medical outcomes including mortality and medical events via a suite of analytical products such as reports, interactive dashboards and peer-reviewed publications for providers of the NHS Health Check, commissioners of the NHS Health Check and other stakeholders (for instance, NHS England, patients and the public, the primary care community, government, policy makers, charities, UK and international researchers) who wish to better understand the status and outcomes related to the NHS Health Check programme.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of different public health profiles at https://fingertips.phe.org.uk/. PHE also undertakes ad hoc analyses of PCMD to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs). These results of these analyses are provided directly to Local Authorities in the form of aggregate statistics and tables.

Secondary Use Service (SUS)

PURPOSE 1: (NHS Digital National Cancer Register) The linked SUS and National Cancer Register data is used by PHE for the specific purpose of producing a set of monthly-updated cancer outcomes metrics on the performance of the NHS in diagnosing and treating cancer patients as soon as possible, such as cancer stage at diagnosis and the percentage of cases diagnosed as an emergency. These metrics, as well as other statistics based on the analysis of data from the cancer register, are published at http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic_specific_work/cancer_outcome_metrics.

Community Services Data Set

PURPOSE: (DHSC Healthy Lifecourse work programme) The results of the analyses of CSDS data undertaken by PHE are published in a range of indicators, analytical tools and reports, including the child and maternal health profiles at

https://fingertips.phe.org.uk/ and https://www.gov.uk/government/collections/child-and-maternal-health-statistics.

This information is used by PHE to advise on the development and monitor the effectiveness of national child and maternal health policies and initiatives, such as investment in breastfeeding services and child and adult weight management programmes. PHE also undertakes ad hoc analyses of CSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Emergency Care Data Set

PURPOSE 1: (DHSC Injury prevention and mental health work programmes) The results of the analyses of ECDS data are published in a range of indicators, analytical tools and reports, including the crisis care profiles at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/crisis-care.

The findings derived from ECDS data are further used by PHE to monitor the effectiveness of national policies aimed at preventing injuries and self-harm, such as the National Crisis Care Concordat. This information is also used by local multi-agency partnerships to support the commissioning of violence and self-harm prevention services at a local level.

PURPOSE 2: (UKHSA Syndromic surveillance programme) The results of the analyses of ECDS data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance report published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on EDCS data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including Emergency Care Data Set data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

PURPOSE 3: (NHS Digital National Cancer Register) The results of the analyses under-taken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 4: (UKHSA Health protection work programme) The findings derived from the linked ECDS data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections, the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis and the vaccination information at https://www.gov.uk/government/collections/vaccine-uptake.

PURPOSE 5: (NHS Digital National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network

(http://www.eurocat-network.eu/).

The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

PURPOSE 6: (DHSC Drug and Alcohol work programme) The results of the locational analyses of the new ECDS Assault_Location_Description field data undertaken by PHE are used in the following ways: to make recommendations to NHS England on whether locational information on assaults should be recorded at source in EDs and, if so, the methodology for this; and provide anonymised aggregate reports on assault locations, including ‘hotspots’, to the London Violence Reduction Unit, which is based on the Greater London Authority, to assess the utility of this information for supporting the commissioning and monitoring the effectiveness of local violence reduction strategies and initiatives.

Health Survey for England

PURPOSE: (DHSC Healthy lifestyles work programme) The data which has been anonymised and provided to PHE is used to estimate excess calorie intakes for children and teenagers. The results of these analyses are providing the evidence for a national calorie reduction campaign led by PHE.

Separately, the anonymised data set on adult gambling behaviours will be used by PHE to analyse gambling prevalence and harms as part of an evidence review commissioned by the Department of Health & Social Care. (The PHE remit letter for 2019/20 from the Parliamentary Under Secretary of State for Public Health and Primary Care specifically states that “During the reporting year PHE will complete and publish evidence reviews on the public health impacts associated with prescription drug dependence and gambling”.)

Hospital Episode Statistics (HES)

PURPOSE 1: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Public Health Outcomes Framework at http://www.phoutcomes.info/. The findings derived from HES data are used to inform the development and monitor the effectiveness of national policies and initiatives aimed at protecting and improving public health and reducing health inequalities. The HES data is also analysed by PHE to produce statistics to help Local Authorities fulfil their statutory duty to improve the health of their local population, for example through the production of joint strategic needs assessments and local health and wellbeing strategies.

PURPOSE 2: (UKHSA Health protection work programme) The findings of the comparison of the numbers of maternity admissions for Covid-19 and related conditions identified through the separate analyses of HES and SUS APC are used to refine the methodology developed by UKHSA to identify maternity admissions from SUS APC. This refined methodology is used to ensure that the numbers of maternity admissions to hospital for Covid-19 and related conditions is sufficiently accurate to inform the near-real-time modelling and planning for Covid-19 and related hospital pressure and risk management by UKHSA.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (DHSC Mental health work programme) The results of the analyses of IAPT data are published in a range of indicators, analytical tools and reports, including the common mental health disorders profiling tool at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from IAPT data is also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with mental health problems, particularly the NHS Five Year Forward View for Mental Health. This information is also used by Local Authorities to support the local commissioning of mental health services.

Maternity Services Data Set (MSDS v1)

PURPOSE: (DHSC Healthy Lifecourse work programme) The results of the analyses of the MSDS data are published by PHE in a range of indicators, analytical tools and reports, including the child health profiles at

https://fingertips.phe.org.uk/profile/child-health-profiles.

This information is used by PHE to advise on the development and monitor the effectiveness of national child and maternal health policies and initiatives, such as investment in breastfeeding services and child and adult weight management programmes. PHE also undertakes ad hoc analyses of MSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Maternity Services Data Set (MSDS V2 Commissioning Extract)

PURPOSE 1: (UKHSA Health protection work programme) The results of the analyses of the linked MSDS data are used by UKHSA to advise NHS England on the development of the COVID-19 vaccination programme. The results are also used to support UKHSA, DHSC and groups such as SPI-M in advising the government on its ongoing response to the COVID-19 pandemic, particularly in relation to the vaccination programme but also the longer term impacts of COVID-19 and the vaccines on child and maternal health. The findings of the analyses will also be submitted for publication in peer reviewed academic journals.

PURPOSE 2: (DHSC Healthy lifestyle work programme) The results of the analyses of the pseudonymised version of the MSDS data will be used by DHSC to update the child and maternal health indicators previously produced by PHE but which have not been refreshed since the last extract of MSDS data was made available by NHS Digital in 2018/19. These indicators will be published in a range of profiles, reports and analytical tools for Local Authorities and the NHS.

Mental Health Services Data Set (MHSDS)

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Common Mental Health Disorders Profiling Tool at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from MHSDS are also used by PHE to develop and assess the effectiveness of national policies aimed at improving the lives of people with mental health problems, and are used by Local Authorities to support the commissioning and provision of mental health services at a local level.

National Child Measurement Programme (NCMP)

PURPOSE: (DHSC Healthy Lifecourse work programme) The data which has been anonymised and provided to PHE is used to analyse variations and trends in the percentages of children who are underweight, normal weight, overweight and obese. The data is also used to monitor how the proportions of children in these different categories changes as they progress from Reception to Year 6. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the local authority profiles at http://fingertips.phe.org.uk/profile/national-child-measurement-programme.

PHE further uses the data to provide statistics to schools on the percentage of children who are an unhealthy weight. The NCMP findings are also used by PHE to advise on and support the development of national policies to increase the proportion of children who are normal weight, and are used by Local Authorities to commission and provide services that support families to make healthy lifestyle changes.

National Diabetes Audit

PURPOSE: (DHSC Cardiovascular disease work programme) The results of the analyses of NDA data are published in a range of indicators, analytical tools and reports, including the diabetes profiles at

https://fingertips.phe.org.uk/profile/diabetes-ft.

The findings derived from NDA data are also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with diabetes, particularly supporting and evaluating the NHS Diabetes Prevention Programme. This information is also used by Local Authorities to support the local commissioning of cardiovascular prevention and treatment services.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (UKHSA Syndromic surveillance programme) The results of the analyses of NHS 111 data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance reports published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on NHS 111 data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including NHS 111 data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are being used to develop further indicators of care-giving across demographic groups and geographic areas for inclusion in the Dementia Profile published at https://fingertips.phe.org.uk/profile-group/mental-health.

The results of these analyses are being used to understand more about the care provided to people with dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Dementia Profile and the Common Mental Health Disorders profile at https://fingertips.phe.org.uk/profile-group/mental-health.

The findings of these analyses are also used to monitor progress in improving the diagnosis and treatment of dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: UKHSA Health protection work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the local authority Sexual and Reproductive Health Profiles at https://fingertips.phe.org.uk/profile/sexualhealth.

The SRHAD findings are used by PHE to develop and monitor national policies for Sexual Health and HIV, and by Local Authorities to provide SRH services to improve sexual and reproductive health across England.

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COVID-19:

(PURPOSE: UKHSA Health protection work programme and DHSC COVID-19 work programme) Covid-19 presents a significant threat to the population in terms of increased morbidity and mortality, particularly among vulnerable groups such as those with pre-existing disease. PHE epidemiological surveillance will be undertaken to monitor and describe the circulation of Covid-19 in the population, and to measure its impact on public health and the healthcare system.

PHE surveillance is required to understand how well Covid-19 response programmes are working and to inform future planning using epidemiological and modelling methods. The results of the analyses of the SUS+ APC and ECDS data linked to the SGSS, CHESS and mortality data are used by PHE to produce aggregate statistical reports that inform the national Covid-19 action plan, the health protection guidance provided to healthcare professionals and the public, and to support Covid-19-related capacity and capability planning in the NHS. Data will be received in daily extract files via MESH and linked and analysed by PHE analysts.

The statistical outputs based on the linked data are published by PHE as aggregate counts and rates (for example, at

https://www.gov.uk/government/organisations/public-health-england/about/statistics),

with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

The guidance for healthcare professionals and the public produced by PHE and other national bodies involved in the Covid-19 response is published at https://www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance.

Shielded Patient List

PURPOSE: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The findings derived from the linked SPL and NCARDRS Register data are used to measure differences in health outcomes for autoimmune rheumatic diseases patients who are on the SPL and those who are not. The findings will be used to inform the development of the national policy response and guidance on shielding to protect autoimmune rheumatic disease patients from adverse outcomes associated with COVID-19 infection and the wider pandemic response. The findings will also be submitted for publication in peer-reviewed medical journals. The statistical outputs based on the linked data are published as aggregate counts and rates, with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

Cumbrian Birth Cohort (CBC)

PURPOSE: (NHS Digital National Cancer Register) The findings derived from the linked CBC and National Cancer Register data are used to analyse and monitor cancer incidence and prevalence rates among individuals at risk of radiation exposure as a result of the 1957 Windscale/Sellafield fire. It will also be used to monitor the treatment and outcomes for those diagnosed with cancer among this cohort. The findings will be used to help measure the risk of ionising radiation exposure for cancer and submitted to the Department of Health & Social Care Committee on Medical Aspects of Radiation in the Environment (COMARE) to help inform the national and international policy response to potential future environmental exposure events. The statistical outputs based on the linked data are published as aggregate counts and rates, with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

The PHE remit letter, dated March 2018, sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2018 to March 2019: https://www.gov.uk/government/publications/phe-remit-letter-2018-to-2019

Likewise, the PHE remit letter dated March 2019 sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2019 to March 2020: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/789194/phe-priorities-in-health-and-care-2019-2020-letter.pdf

The PHE remit letter dated April 2020 sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2020 to March 2021, emphasising the focus on COVID-19: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/882570/PHE_Remit_Letter_from_Jo_Churchill_to_Duncan_Selbie.pdf

The current version of the Single DSA has not been systematically edited at this stage to remove all references to PHE, but revisions have been made to make clear which data set listed will be processed by which receiver organisation following the PHE closure. The new DSAs with the receiver organisations that in due course will replace the current Single DSA will have all references to PHE removed.

Public Health England (PHE) is the national agency charged with protecting and improving the nation’s health. It is an executive agency of the Department of Health and Social Care (DHSC) and acts on behalf of the Secretary of State to discharge his statutory duties to protect and improve public health in England, and reduce health inequalities, as set out in Sections 2A and 2B of the NHS Act 2006, as inserted by the Health and Social Care Act 2012. These functions and its annual priorities are set out in the remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care (https://www.gov.uk/government/publications/phe-remit-letter-2017-to-2018).

PHE is a direct provider of health protection and health improvement services to patients and the public in England. The successful fulfilment of its remit depends on its ability to process data on the health status of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data it uses it collects directly, but PHE also depends on appropriate and timely access to other sources of health and care data, such as the health status and healthcare provider activity data collected at a national level by NHS Digital.

PHE processes large volumes of data as part of the fulfilment of their remit and function. PHE commits to implement and comply with internal governance arrangements to ensure that access to the data they hold as data controllers, and data controllers in common, is managed in accordance with data protection regulations.

This Data Sharing Agreement (DSA) supports the statutory remit and core functions of PHE by setting out the justifications and legal basis for the sharing of specified data sets by NHS Digital with PHE.

The majority of the datasets shared between the two organisations are detailed in Section 3 of this DSA. Those additional datasets shared which are not contained in Section 3 are detailed below:

NHS 111 Repeat Caller Service Data Set – daily extract of pseudo/anonymised data (from 2013/14 M05 to latest available)

Personal Social Services Survey of Adult Carers in England (PSS- SACE) - biannual extract of pseudo/anonymised data (from 2009/10 to latest available)

Recorded Dementia Diagnoses (RDD) Data Set - annual extract of pseudo/anonymised data (from 2016/17 to latest available)

Secondary Uses Service (SUS+) - monthly extract of data provided by SUS team within NHS Digital.

Note that Daily SUS and Daily Emergency Care Dataset (ECDS) are provided by the NHS Digital’s SUS team, not by the HES Data Production team.

To note, the legal basis for PHE to process each of the datasets is General Data Protection Regulation (GDPR) Article 6(1)e (performance of a task carried out in the public interest or in the exercise of official authority vested in the controller; ) and 9(2)h (the management of the Health and Social Care system and services) and 9(2)i (public health interest). NHS Digital's legal basis to disseminate is Health & Social Care Act 2012- 261(1) other.

Please note, specific information regarding the purposes for each dissemination from NHS Digital to PHE is detailed later in this section.

For clarity, this DSA does not cover transfers of data to support the direct provision of treatment and care services to patients, such as the use by PHE of the National Health Application and Infrastructure Services (NHAIS) managed by NHS Digital to identify patients eligible to be called for screening for bowel, breast and cervical cancer as part of the NHS Cancer Screening Programmes. It also excludes transfers of data from NHS Digital to PHE for research purposes that have been approved through the Data Access Request Service (DARS) and for which individual data sharing agreements are in place.

PHE commits to ensuring that all its processing of data transferred from NHS Digital complies with: the legal framework for data protection and confidentiality; the updated Caldicott principles; other associated guidance, and the information governance assurance framework for health and care organisations codified in the Data Security and Protection Toolkit.

This single DSA differs from the standard NHS Digital data release process; there are a number of reasons for this different arrangement:

- This DSA builds on the letter from the Department of Health and Social Care (DHSC) sponsors of PHE and NHS Digital dated 26th January 2015 confirming the Department’s support for the approach set out herein to the exchange of data between the two organisations in order to support the fulfilment of their respective remits and functions. It also builds on previous Memorandum of Understanding on Data Exchange agreements between PHE and NHS Digital covering the years 2015/16, 2016/17, 2017/18 and the first half of 2018/19.

- This DSA recognises the remit and functions of NHS Digital as set out in the Health & Social Care Act 2012 and the Care Act 2014, and of PHE as set out in its annual remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care. It also recognises the specific legal gateways provided to PHE under Section 60 of the Health & Social Care Act 2001, as re-enacted by Section 251 of the NHS Act 2006 and the associated Health Service (Control of Patient Information) Regulations 2002, to lawfully process confidential patient information. PHE has also been granted specific exemptions from national data opt outs by the Secretary of State in recognition of its national role in protecting and improving public health.

With specific regard to NHS Digital data which has been pseudonymised prior to transfer to PHE, this data is released using NHS Digital powers provided under the Health & Social Care Act 2012. The controls required to ensure the risks of patients being re-identified are minimised and are set out within the overarching NHS Digital Data Sharing Framework Contract signed by PHE.

If PHE require a new dataset from NHS Digital or if the data provided from NHS Digital to PHE is used for purposes that are different from those for which the data was provided in the first instance, PHE will seek permission, via an amendment to this DSA, from NHS Digital before using the data.

Specific information regarding the purposes for processing for each dataset disseminated by NHS Digital to PHE is detailed below:

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (NHS Digital National Cancer Register) The CWT contains information on patients urgently referred for suspected cancer or to be treated for cancer in NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration-and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (including referral waiting times), treatment (including treatment waiting times) and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. The CWT data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand the impact of patient routes to diagnosis and treatment pathways on patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk.

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (NHS Digital National Cancer Register) The DIDS data contains information on the diagnostic imaging tests, such as x-rays and MRI scans, carried out on cancer patients treated in NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration- and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (such as DIDS), treatment and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. This linked data is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

Hospital Episodes Statistics (HES)

PURPOSE 1: (NHS Digital National Cancer Register) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these patients. The HES data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 2: (UKHSA Health protection work programme and DHSC COVID-19 work programme). The patient identifiable HES data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness

g) monitoring and surveillance of the wider public health impacts of COVID-19.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. HES is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 3: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The patient identifiable HES data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register

(https://www.gov.uk/guidance/the-national-congenital- anomaly-and-rare-disease-registration-service-ncardrs). PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these individuals.

PURPOSE 4: (DHSC Drug and Alcohol work programme) The patient identifiable HES data provided by NHS Digital is linked to the information collected by Local Authority-commissioned providers of drug and alcohol treatment services as part of the Individual Placement and Support (IPS) programme. IPS involves the provision of enhanced support to the clients of substance misuse services to help them find employment. Participation in IPS is voluntary and the written agreement of service users is obtained for information about the IPS support they receive to be shared with PHE, and for this information to be linked by PHE to other data sets, including hospital admissions records and the information held in the PHE National Drug Treatment Monitoring System (NDTMS). The purpose for the linkage is to undertake research into the effectiveness of IPS in reducing the health harms associated with substance misuse.

PURPOSE 5: (UKHSA Health protection work programme and DHSC COVID-19 work programme) The patient identifiable HES data provided by NHS Digital is linked to the national data sets collected and managed by UKHSA on cases of communicable disease. These data sets, which include the statutory notifications of infectious diseases that all registered medical practitioners must report to UKHSA, are used by the national and local public health system in England for the purposes of diagnosing, controlling, preventing, monitoring and managing health protection incidents and outbreaks. Communicable disease reports are often missing the ethnic group of the infected patient, so the information on ethnicity recorded in HES is used by UKHSA to provide this missing demographic information. The COVID-19 pandemic has highlighted the importance of analysing communicable disease infection rates by ethnic group, so the resulting linked data is used to strengthen the UKHSA surveillance of communicable disease incidence, prevalence and outcomes across different groups. For example, the linked data is processed by the hepatitis surveillance work programme to provide more accurate statistics on infection rates across ethnic groups, and to inform policies on testing for blood borne viruses and the targeting of prevention and control measures at ethnic groups with higher infection rates and the poorest outcomes.

Linked HES & Civil Registry Deaths

PURPOSE 1: (DHSC End of life care work programme) The linked HES/Mortality data contains hospital admissions data and mortality records but no information that could be used to directly identify individual patients is provided to PHE. The data is used by PHE to undertake a range of analyses of the health status and care received by individuals at the end of their lives. It is also used to analyse the place of death and determine whether the care provided beforehand was in a hospital, a residential or nursing establishment, or at home.

PURPOSE 2: (DHSC Health Check) The linked pseudonymised HES APC and Civil Registrations (Deaths) – Summary Care Record data set for the period 01/04/2009 - 31/03/2018 will be used to fulfil the third stage of PHE’s analysis strategy to estimate the impact of NHS Health Check attendance on health outcomes. The Primary Care data set ‘NHS Health Checks’ was collected by NHS Digital under Direction on behalf of PHE, and initial analysis was conducted under DARS-NIC-201243-R7L2M.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The PCMD data provided by NHS Digital to PHE details the cause of death but includes no information that could be used to directly identify individual patients. The data is used by PHE to produce a range of statistics on cause-specific death for different demographic groups and geographic areas. These analyses are undertaken on a routine basis by PHE to support its long-term surveillance of non-communicable diseases and to support the work of local public health teams in the discharge of the statutory health improvement duty of Local Authorities.

Secondary Use Service (SUS)

PURPOSE 1: (NHS Digital National Cancer Register) SUS data is essentially an earlier, less ‘clean’ version of the HES data described above (for example, not all duplicate records have been removed) and contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. Data is only provided by NHS Digital for patients with a cancer-related ICD-10 diagnosis code.

Community Services Data Set

PURPOSE: (DHSC Healthy Lifecourse work programme) The CSDS provides information on the provision of community-based health and care services to infants, children, young people and adults. It collects data on: patient demographics, such as age, sex, address and GP registration; referrals to community, mental health and social care services; infant and childhood health screening tests and immunisations; special educational needs, child protection and safeguarding assessments; and other information about community-based services. The pseudonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in the proportions of infants and children reaching developmental milestones, and to analyse the links between child health and educational attainment. It is also used to monitor the use of community-based health and care services, and to produce a range of intelligence outputs to support the commissioning and monitoring of outcomes for community-based services. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities. The data provided by NHS Digital includes a pseudoID to enable the pseudonymised linkage by PHE of the CSDS records for infants and children to the corresponding record of their mothers from the Maternity Services Data Set (MSDS).

Emergency Care Data Set

PURPOSE 1: (DHSC Injury prevention and mental health work programmes) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the monitoring of the numbers and trends in patients attending hospital with injuries, particularly violence-related injuries, and because to self-harm. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including delivering the NHS Five Year Forward View for Mental Health and the National Crisis Care Concordat.

PURPOSE 2: (UKHSA Syndromic surveillance programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its wider duty to protect the nation’s health by providing a national integrated syndromic surveillance system.

PURPOSE 3: (NHS Digital National Cancer Register) The identifiable patient ECDS data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as ECDS) and outcomes of these patients. The ECDS data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 4: (UKHSA Health protection work programme) The patient identifiable ECDS data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. ECDS is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 5: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The patient identifiable ECDS data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register. PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as ECDS) and outcomes of these individuals. The ECDS data linked to CARD registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different rare diseases, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 6: (DHSC Drug and Alcohol work programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. One limitation of the ECDS is that it does not record detailed information on the location at which physical assaults leading to an ED attendance occur which is needed to support local violence reduction strategies. The Data Coordination Board has approved the inclusion of a new Assault_Location_Description field in ECDS to enable this free-text information to be recorded by a sample of EDs engaged in the pilot relating to this new field (DCB0092-2062 And 19/2020, ISN change specification publication date 10-Sep-2020). This pilot is being led by PHE, which will process the anonymised data provided by NHS Digital to assess the utility of the new ECDS field for supporting targeted public health interventions, and make recommendations to NHS England on whether to require the provision of this information in ECDS by all EDs. The following subset of data items provided from the pre-existing pseudonymised ECDS provided to PHE by NHS Digital will be processed by staff from the PHE Drug and Alcohol work programme for the purpose of this pilot:

1. AGE_AT_ARRIVAL

2. AGE_RANGE

3. ARRIVAL_DATE

4. ARRIVAL_MODE

5. ARRIVAL_TIME

6. ASSAULT_LOCATION_DESCRIPTION

7. CHIEF_COMPLAINT_IS_INJURY_RELATED

8. ED_COUNTY_CODE

9. ED_DISTRICT_CODE

10. ETHNIC_CATEGORY

11. ETHNIC_CATEGORY_Description

12. INJURY_ACTIVITY_STATUS

13. INJURY_ACTIVITY_TYPE

14. INJURY_ACTIVITY_TYPE_Description

15. INJURY_DATE

16. INJURY_INTENT (+description)

17. INJURY_MECHANISM (+description)

18. INJURY_TIME

19. LSOA_2011

20. PATIENT_POSTCODE_DISTRICT

21. PLACE_OF_INJURY (+description)

22. SEX

Health Survey for England (HSE)

PURPOSE: (DHSC Healthy lifestyles work programme) The HSE is a longstanding annual survey of the health and lifestyles of a sample of around 8,000 adults and 2,000 children. The HSE is carried out by NatCen Social Research on behalf of NHS Digital. The HSE data, which has been anonymised, has been published for several years on the UK Data Archive, although additional restrictions have recently been applied to this by NHS Digital to further reduce the risk of any of sample participants being identified. PHE commissioned a boost to the number of children included in the 2015 HSE and requires access to more detailed data on children in households than that ordinarily published by NHS Digital via the UK Data Archive.

Separately, PHE also requires access to a more detailed combined set of HSE data bringing together the responses to the questions on adult gambling behaviours from the 2012, 2015, 2016 and 2018 surveys than is ordinarily published by NHS Digital via the UK Data Archive.

Hospital Episode Statistics (HES)

PURPOSE 1: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of a wide range of conditions such as heart disease and stroke, mental health and respiratory disease.

PURPOSE 2: (UKHSA Health protection work programme) The HES data contains information on the numbers of maternity admissions to NHS hospitals for Covid-19 and related conditions. The HES data, which has been anonymised and provided by NHS Digital to UKHSA, is used to validate the numbers of maternity admissions identified through the processing of the more-timely SUS APC data set. Comparison of the numbers of admissions identified through separate analyses of HES and SUS APC has identified a c.10% difference. A list of the SUSSPELLIDs identified from HES is compared to the list derived from the separate analysis of SUS APC to clarify whether the difference is due to the more timely but less complete nature of SUS APC, or to methodological differences between the two sets of analyses, or to some combination of these two factors. The results of this comparison are used to refine the methodology developed to identify maternal admissions from SUS APC, which is used to support the near-real-time modelling and planning for Covid-19 and related hospital pressure and risk management by UKHSA. To note, the analysis of the SUS APC data is undertaken by a team from the former Joint Biosecurity Centre under the DSA separately agreed by JBC and NHS Digital (DARS-NIC-406871-Q9G2Q). Only the SUSSPELLIDs are shared by the (former) PHE (now UKHSA) team carrying out the analysis of HES with the (former) JBC team (now UKHSA) carrying out the analysis of SUS.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (DHSC Mental health work programme) The IAPT data set provides information on access to and outcomes for adults being treated by psychological therapy services across England. It includes patient demographic information and information on referrals to psychological therapy services, mental health assessments and the treatment provided to patients. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence and prevalence of mental health problems such as anxiety disorders and depression. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health, including delivering the NHS Five Year Forward View for Mental Health.

Maternity Services Data Set (MSDSv1)

PURPOSE: (DHSC Healthy Lifecourse work programme) The MSDS provides information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The pseudonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in maternal health, the use of obstetric and antenatal services, and child health outcomes. The results of these analyses are used to produce a range of health intelligence outputs to support the commissioning and monitoring of outcomes for maternity services. The data is also used to monitor progress in achieving the Secretary of State’s ambition to halve the number of stillbirths, neonatal and maternal deaths and brain injuries by 2030, and to monitor progress in implementing national initiatives such as the Maternity Transformation Programme. The data provided by NHS Digital includes a pseudoID to enable the pseudonymised linkage by PHE of the MSDS records of mothers to the corresponding records of their infants and children from the Community Services Data Set (CSDS). This linked data is used by PHE to analyse the impacts of maternal health and care in pregnancy with the health and developmental outcomes for their children.

Maternity Services Data Set (MSDS V2 Commissioning Extract)

PURPOSE 1: (UKHSA Health protection work programme) The MSDS V2 Commissioning Extract is an updated and expanded version of the MSDS V1 data set developed by NHS Digital to support the commissioning and provision of maternal and infant health and care services. The identifiable data provided by NHSD to UKHSA is used to monitor the effectiveness of COVID-19 vaccines in preventing hospital admissions and deaths among pregnant women and infants who have tested positive for SARS-CoV-2. This work forms part of the wider UKHSA vaccine safety and efficacy work programme – which is a core component of the UKHSA remit from the DHSC – as well as the UKHSA response to the COVID-19 pandemic. The results of the analyses of the MSDS data are used by UKHSA to analyse differences by vaccination status in COVID-19-related hospital admissions and deaths among mothers and their infants. The findings are used to advise the development of the NHS vaccination programme and the government’s ongoing response to the COVID-19 pandemic.

PURPOSE 2: (DHSC Healthy lifestyle work programme) In the course of processing the identifiable MSDS V2 Commissioning Extract for the purpose described above (MSDS V2 Commissioning Extract PURPOSE 1), UKHSA first processes the identifiable data to link to other data sets and to ensure that duplicates are removed. It then generates a pseudonymised version of this linked MSDS data set for analysis. This pseudonymised version is a necessary ‘by product’ of the processing of the identifiable MSDS data and a copy of this pseudonymised data will be provided by UKHSA on behalf of NHS Digital to DHSC to be processed in support of its healthy lifestyle work programme. This transfer is necessary because NHS Digital is unable currently to provide a pseudonymised version of the MSDS V2 Commissioning Extract for dissemination directly to DHSC. The DHSC purposes for processing this pseudonymised copy of the MSDS data are the same as for the pseudonymised MSDS V1 data previously supplied to PHE. These purposes are described in full elsewhere in this DSA (MSDS V1 PURPOSE) but in summary, the data is used to monitor numbers and trends in maternal health, use of obstetric and antenatal services, and child health outcomes, and to generate a range of health intelligence outputs to support the commissioning and monitoring of outcomes for maternity services.

Mental Health Services Data Set (MHSDS)

PURPOSE: (DHSC Mental health work programme) The MHSDS contains information on the diagnosis and treatment of patient

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (NHS Digital National Cancer Register) The CWT data linked to cancer registration records is used by PHE to analyse trends in the number of urgent referrals for suspected cancer and resulting diagnoses to understand the effectiveness of this referral route for improving patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the Cancer Services tool at https://fingertips.phe.org.uk/profile/cancerservices.

The findings derived from the linked CWT and cancer registration data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the NHS England National Cancer Strategy Implementation Plan (https://www.england.nhs.uk/cancer/strategy).

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (NHS Digital National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

Hospital Episodes Statistics (HES)

PURPOSE 1: (NHS Digital National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 2: (UKHSA Health protection work programme and DHSC COVID-19 work programme) The findings derived from the linked HES data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections (including COVID-19), the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis

and the vaccination information at

https://www.gov.uk/government/collections/vaccine-uptake and the COVID-19 dashboards at https://coronavirus.data.gov.uk.

PURPOSE 3: (NHS Digital National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network

(http://www.eurocat-network.eu/).

The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

PURPOSE 4: (DHSC Drug and Alcohol work programme) The findings derived from the linked HES data primarily are used to undertake research into the effectiveness of the IPS programme in supporting drug and alcohol treatment service users into employment, and in reducing the health harms and criminal activity associated with substance misuse. The results of the analyses of the linked data will be published in a report to the DHSC and Local Authorities and papers submitted to academic journals to inform and guide the future planning and commissioning of effective local drug and alcohol treatment services across England.

PURPOSE 5: (UKHSA Health protection work programme) The outcomes of analyses based on the enrichment of UKHSA communicable disease data sets with ethnic group information derived from linkage to HES are used to inform public health action to reduce these threats to public health. For example, the results are used to direct front-line prevention and control measures, are published in the form of aggregate statistics and tables in communicable disease surveillance reports, and are used to inform the development of national health protection policy.

Linked HES & Civil Registry Deaths

PURPOSE1: (DHSC End of life care work programme) The results of the analyses undertaken by PHE are published in the End of Life Care Profiles at

https://fingertips.phe.org.uk/.

These profiles are provided by Local Authority and Clinical Commissioning Group and are used to support local health and social care commissioning, for example by providing statistics on the place of death and nursing and care home bed rates.

PURPOSE 2: (DHSC NHS Health Check) The result of these analyses undertaken by PHE will determine the efficacy of the NHS Health Check Programme and important medical outcomes including mortality and medical events via a suite of analytical products such as reports, interactive dashboards and peer-reviewed publications for providers of the NHS Health Check, commissioners of the NHS Health Check and other stakeholders (for instance, NHS England, patients and the public, the primary care community, government, policy makers, charities, UK and international researchers) who wish to better understand the status and outcomes related to the NHS Health Check programme.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of different public health profiles at https://fingertips.phe.org.uk/. PHE also undertakes ad hoc analyses of PCMD to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs). These results of these analyses are provided directly to Local Authorities in the form of aggregate statistics and tables.

Secondary Use Service (SUS)

PURPOSE 1: (NHS Digital National Cancer Register) The linked SUS and National Cancer Register data is used by PHE for the specific purpose of producing a set of monthly-updated cancer outcomes metrics on the performance of the NHS in diagnosing and treating cancer patients as soon as possible, such as cancer stage at diagnosis and the percentage of cases diagnosed as an emergency. These metrics, as well as other statistics based on the analysis of data from the cancer register, are published at http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic_specific_work/cancer_outcome_metrics.

Community Services Data Set

PURPOSE: (DHSC Healthy Lifecourse work programme) The results of the analyses of CSDS data undertaken by PHE are published in a range of indicators, analytical tools and reports, including the child and maternal health profiles at

https://fingertips.phe.org.uk/ and https://www.gov.uk/government/collections/child-and-maternal-health-statistics.

This information is used by PHE to advise on the development and monitor the effectiveness of national child and maternal health policies and initiatives, such as investment in breastfeeding services and child and adult weight management programmes. PHE also undertakes ad hoc analyses of CSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Emergency Care Data Set

PURPOSE 1: (DHSC Injury prevention and mental health work programmes) The results of the analyses of ECDS data are published in a range of indicators, analytical tools and reports, including the crisis care profiles at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/crisis-care.

The findings derived from ECDS data are further used by PHE to monitor the effectiveness of national policies aimed at preventing injuries and self-harm, such as the National Crisis Care Concordat. This information is also used by local multi-agency partnerships to support the commissioning of violence and self-harm prevention services at a local level.

PURPOSE 2: (UKHSA Syndromic surveillance programme) The results of the analyses of ECDS data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance report published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on EDCS data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including Emergency Care Data Set data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

PURPOSE 3: (NHS Digital National Cancer Register) The results of the analyses under-taken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 4: (UKHSA Health protection work programme) The findings derived from the linked ECDS data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections, the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis and the vaccination information at https://www.gov.uk/government/collections/vaccine-uptake.

PURPOSE 5: (NHS Digital National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network

(http://www.eurocat-network.eu/).

The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

PURPOSE 6: (DHSC Drug and Alcohol work programme) The results of the locational analyses of the new ECDS Assault_Location_Description field data undertaken by PHE are used in the following ways: to make recommendations to NHS England on whether locational information on assaults should be recorded at source in EDs and, if so, the methodology for this; and provide anonymised aggregate reports on assault locations, including ‘hotspots’, to the London Violence Reduction Unit, which is based on the Greater London Authority, to assess the utility of this information for supporting the commissioning and monitoring the effectiveness of local violence reduction strategies and initiatives.

Health Survey for England

PURPOSE: (DHSC Healthy lifestyles work programme) The data which has been anonymised and provided to PHE is used to estimate excess calorie intakes for children and teenagers. The results of these analyses are providing the evidence for a national calorie reduction campaign led by PHE.

Separately, the anonymised data set on adult gambling behaviours will be used by PHE to analyse gambling prevalence and harms as part of an evidence review commissioned by the Department of Health & Social Care. (The PHE remit letter for 2019/20 from the Parliamentary Under Secretary of State for Public Health and Primary Care specifically states that “During the reporting year PHE will complete and publish evidence reviews on the public health impacts associated with prescription drug dependence and gambling”.)

Hospital Episode Statistics (HES)

PURPOSE 1: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Public Health Outcomes Framework at http://www.phoutcomes.info/. The findings derived from HES data are used to inform the development and monitor the effectiveness of national policies and initiatives aimed at protecting and improving public health and reducing health inequalities. The HES data is also analysed by PHE to produce statistics to help Local Authorities fulfil their statutory duty to improve the health of their local population, for example through the production of joint strategic needs assessments and local health and wellbeing strategies.

PURPOSE 2: (UKHSA Health protection work programme) The findings of the comparison of the numbers of maternity admissions for Covid-19 and related conditions identified through the separate analyses of HES and SUS APC are used to refine the methodology developed by UKHSA to identify maternity admissions from SUS APC. This refined methodology is used to ensure that the numbers of maternity admissions to hospital for Covid-19 and related conditions is sufficiently accurate to inform the near-real-time modelling and planning for Covid-19 and related hospital pressure and risk management by UKHSA.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (DHSC Mental health work programme) The results of the analyses of IAPT data are published in a range of indicators, analytical tools and reports, including the common mental health disorders profiling tool at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from IAPT data is also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with mental health problems, particularly the NHS Five Year Forward View for Mental Health. This information is also used by Local Authorities to support the local commissioning of mental health services.

Maternity Services Data Set (MSDS v1)

PURPOSE: (DHSC Healthy Lifecourse work programme) The results of the analyses of the MSDS data are published by PHE in a range of indicators, analytical tools and reports, including the child health profiles at

https://fingertips.phe.org.uk/profile/child-health-profiles.

This information is used by PHE to advise on the development and monitor the effectiveness of national child and maternal health policies and initiatives, such as investment in breastfeeding services and child and adult weight management programmes. PHE also undertakes ad hoc analyses of MSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Maternity Services Data Set (MSDS V2 Commissioning Extract)

PURPOSE 1: (UKHSA Health protection work programme) The results of the analyses of the linked MSDS data are used by UKHSA to advise NHS England on the development of the COVID-19 vaccination programme. The results are also used to support UKHSA, DHSC and groups such as SPI-M in advising the government on its ongoing response to the COVID-19 pandemic, particularly in relation to the vaccination programme but also the longer term impacts of COVID-19 and the vaccines on child and maternal health. The findings of the analyses will also be submitted for publication in peer reviewed academic journals.

PURPOSE 2: (DHSC Healthy lifestyle work programme) The results of the analyses of the pseudonymised version of the MSDS data will be used by DHSC to update the child and maternal health indicators previously produced by PHE but which have not been refreshed since the last extract of MSDS data was made available by NHS Digital in 2018/19. These indicators will be published in a range of profiles, reports and analytical tools for Local Authorities and the NHS.

Mental Health Services Data Set (MHSDS)

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Common Mental Health Disorders Profiling Tool at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from MHSDS are also used by PHE to develop and assess the effectiveness of national policies aimed at improving the lives of people with mental health problems, and are used by Local Authorities to support the commissioning and provision of mental health services at a local level.

National Child Measurement Programme (NCMP)

PURPOSE: (DHSC Healthy Lifecourse work programme) The data which has been anonymised and provided to PHE is used to analyse variations and trends in the percentages of children who are underweight, normal weight, overweight and obese. The data is also used to monitor how the proportions of children in these different categories changes as they progress from Reception to Year 6. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the local authority profiles at http://fingertips.phe.org.uk/profile/national-child-measurement-programme.

PHE further uses the data to provide statistics to schools on the percentage of children who are an unhealthy weight. The NCMP findings are also used by PHE to advise on and support the development of national policies to increase the proportion of children who are normal weight, and are used by Local Authorities to commission and provide services that support families to make healthy lifestyle changes.

National Diabetes Audit

PURPOSE: (DHSC Cardiovascular disease work programme) The results of the analyses of NDA data are published in a range of indicators, analytical tools and reports, including the diabetes profiles at

https://fingertips.phe.org.uk/profile/diabetes-ft.

The findings derived from NDA data are also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with diabetes, particularly supporting and evaluating the NHS Diabetes Prevention Programme. This information is also used by Local Authorities to support the local commissioning of cardiovascular prevention and treatment services.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (UKHSA Syndromic surveillance programme) The results of the analyses of NHS 111 data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance reports published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on NHS 111 data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including NHS 111 data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are being used to develop further indicators of care-giving across demographic groups and geographic areas for inclusion in the Dementia Profile published at https://fingertips.phe.org.uk/profile-group/mental-health.

The results of these analyses are being used to understand more about the care provided to people with dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Dementia Profile and the Common Mental Health Disorders profile at https://fingertips.phe.org.uk/profile-group/mental-health.

The findings of these analyses are also used to monitor progress in improving the diagnosis and treatment of dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: UKHSA Health protection work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the local authority Sexual and Reproductive Health Profiles at https://fingertips.phe.org.uk/profile/sexualhealth.

The SRHAD findings are used by PHE to develop and monitor national policies for Sexual Health and HIV, and by Local Authorities to provide SRH services to improve sexual and reproductive health across England.

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COVID-19:

(PURPOSE: UKHSA Health protection work programme and DHSC COVID-19 work programme) Covid-19 presents a significant threat to the population in terms of increased morbidity and mortality, particularly among vulnerable groups such as those with pre-existing disease. PHE epidemiological surveillance will be undertaken to monitor and describe the circulation of Covid-19 in the population, and to measure its impact on public health and the healthcare system.

PHE surveillance is required to understand how well Covid-19 response programmes are working and to inform future planning using epidemiological and modelling methods. The results of the analyses of the SUS+ APC and ECDS data linked to the SGSS, CHESS and mortality data are used by PHE to produce aggregate statistical reports that inform the national Covid-19 action plan, the health protection guidance provided to healthcare professionals and the public, and to support Covid-19-related capacity and capability planning in the NHS. Data will be received in daily extract files via MESH and linked and analysed by PHE analysts.

The statistical outputs based on the linked data are published by PHE as aggregate counts and rates (for example, at

https://www.gov.uk/government/organisations/public-health-england/about/statistics),

with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

The guidance for healthcare professionals and the public produced by PHE and other national bodies involved in the Covid-19 response is published at https://www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance.

Shielded Patient List

PURPOSE: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The findings derived from the linked SPL and NCARDRS Register data are used to measure differences in health outcomes for autoimmune rheumatic diseases patients who are on the SPL and those who are not. The findings will be used to inform the development of the national policy response and guidance on shielding to protect autoimmune rheumatic disease patients from adverse outcomes associated with COVID-19 infection and the wider pandemic response. The findings will also be submitted for publication in peer-reviewed medical journals. The statistical outputs based on the linked data are published as aggregate counts and rates, with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

Cumbrian Birth Cohort (CBC)

PURPOSE: (NHS Digital National Cancer Register) The findings derived from the linked CBC and National Cancer Register data are used to analyse and monitor cancer incidence and prevalence rates among individuals at risk of radiation exposure as a result of the 1957 Windscale/Sellafield fire. It will also be used to monitor the treatment and outcomes for those diagnosed with cancer among this cohort. The findings will be used to help measure the risk of ionising radiation exposure for cancer and submitted to the Department of Health & Social Care Committee on Medical Aspects of Radiation in the Environment (COMARE) to help inform the national and international policy response to potential future environmental exposure events. The statistical outputs based on the linked data are published as aggregate counts and rates, with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

The PHE remit letter, dated March 2018, sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2018 to March 2019: https://www.gov.uk/government/publications/phe-remit-letter-2018-to-2019

Likewise, the PHE remit letter dated March 2019 sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2019 to March 2020: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/789194/phe-priorities-in-health-and-care-2019-2020-letter.pdf

The PHE remit letter dated April 2020 sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2020 to March 2021, emphasising the focus on COVID-19: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/882570/PHE_Remit_Letter_from_Jo_Churchill_to_Duncan_Selbie.pdf

The current version of the Single DSA has not been systematically edited at this stage to remove all references to PHE, but revisions have been made to make clear which data set listed will be processed by which receiver organisation following the PHE closure. The new DSAs with the receiver organisations that in due course will replace the current Single DSA will have all references to PHE removed.

Public Health England (PHE) is the national agency charged with protecting and improving the nation’s health. It is an executive agency of the Department of Health and Social Care (DHSC) and acts on behalf of the Secretary of State to discharge his statutory duties to protect and improve public health in England, and reduce health inequalities, as set out in Sections 2A and 2B of the NHS Act 2006, as inserted by the Health and Social Care Act 2012. These functions and its annual priorities are set out in the remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care (https://www.gov.uk/government/publications/phe-remit-letter-2017-to-2018).

PHE is a direct provider of health protection and health improvement services to patients and the public in England. The successful fulfilment of its remit depends on its ability to process data on the health status of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data it uses it collects directly, but PHE also depends on appropriate and timely access to other sources of health and care data, such as the health status and healthcare provider activity data collected at a national level by NHS Digital.

PHE processes large volumes of data as part of the fulfilment of their remit and function. PHE commits to implement and comply with internal governance arrangements to ensure that access to the data they hold as data controllers, and data controllers in common, is managed in accordance with data protection regulations.

This Data Sharing Agreement (DSA) supports the statutory remit and core functions of PHE by setting out the justifications and legal basis for the sharing of specified data sets by NHS Digital with PHE.

The majority of the datasets shared between the two organisations are detailed in Section 3 of this DSA. Those additional datasets shared which are not contained in Section 3 are detailed below:

NHS 111 Repeat Caller Service Data Set – daily extract of pseudo/anonymised data (from 2013/14 M05 to latest available)

Personal Social Services Survey of Adult Carers in England (PSS- SACE) - biannual extract of pseudo/anonymised data (from 2009/10 to latest available)

Recorded Dementia Diagnoses (RDD) Data Set - annual extract of pseudo/anonymised data (from 2016/17 to latest available)

Secondary Uses Service (SUS+) - monthly extract of data provided by SUS team within NHS Digital.

Note that Daily SUS and Daily Emergency Care Dataset (ECDS) are provided by the NHS Digital’s SUS team, not by the HES Data Production team.

To note, the legal basis for PHE to process each of the datasets is General Data Protection Regulation (GDPR) Article 6(1)e (performance of a task carried out in the public interest or in the exercise of official authority vested in the controller; ) and 9(2)h (the management of the Health and Social Care system and services) and 9(2)i (public health interest). NHS Digital's legal basis to disseminate is Health & Social Care Act 2012- 261(1) other.

Please note, specific information regarding the purposes for each dissemination from NHS Digital to PHE is detailed later in this section.

For clarity, this DSA does not cover transfers of data to support the direct provision of treatment and care services to patients, such as the use by PHE of the National Health Application and Infrastructure Services (NHAIS) managed by NHS Digital to identify patients eligible to be called for screening for bowel, breast and cervical cancer as part of the NHS Cancer Screening Programmes. It also excludes transfers of data from NHS Digital to PHE for research purposes that have been approved through the Data Access Request Service (DARS) and for which individual data sharing agreements are in place.

PHE commits to ensuring that all its processing of data transferred from NHS Digital complies with: the legal framework for data protection and confidentiality; the updated Caldicott principles; other associated guidance, and the information governance assurance framework for health and care organisations codified in the Data Security and Protection Toolkit.

This single DSA differs from the standard NHS Digital data release process; there are a number of reasons for this different arrangement:

- This DSA builds on the letter from the Department of Health and Social Care (DHSC) sponsors of PHE and NHS Digital dated 26th January 2015 confirming the Department’s support for the approach set out herein to the exchange of data between the two organisations in order to support the fulfilment of their respective remits and functions. It also builds on previous Memorandum of Understanding on Data Exchange agreements between PHE and NHS Digital covering the years 2015/16, 2016/17, 2017/18 and the first half of 2018/19.

- This DSA recognises the remit and functions of NHS Digital as set out in the Health & Social Care Act 2012 and the Care Act 2014, and of PHE as set out in its annual remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care. It also recognises the specific legal gateways provided to PHE under Section 60 of the Health & Social Care Act 2001, as re-enacted by Section 251 of the NHS Act 2006 and the associated Health Service (Control of Patient Information) Regulations 2002, to lawfully process confidential patient information. PHE has also been granted specific exemptions from national data opt outs by the Secretary of State in recognition of its national role in protecting and improving public health.

With specific regard to NHS Digital data which has been pseudonymised prior to transfer to PHE, this data is released using NHS Digital powers provided under the Health & Social Care Act 2012. The controls required to ensure the risks of patients being re-identified are minimised and are set out within the overarching NHS Digital Data Sharing Framework Contract signed by PHE.

If PHE require a new dataset from NHS Digital or if the data provided from NHS Digital to PHE is used for purposes that are different from those for which the data was provided in the first instance, PHE will seek permission, via an amendment to this DSA, from NHS Digital before using the data.

Specific information regarding the purposes for processing for each dataset disseminated by NHS Digital to PHE is detailed below:

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (NHS Digital National Cancer Register) The CWT contains information on patients urgently referred for suspected cancer or to be treated for cancer in NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration-and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (including referral waiting times), treatment (including treatment waiting times) and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. The CWT data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand the impact of patient routes to diagnosis and treatment pathways on patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk.

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (NHS Digital National Cancer Register) The DIDS data contains information on the diagnostic imaging tests, such as x-rays and MRI scans, carried out on cancer patients treated in NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration- and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (such as DIDS), treatment and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. This linked data is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

Hospital Episodes Statistics (HES)

PURPOSE 1: (NHS Digital National Cancer Register) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these patients. The HES data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 2: (UKHSA Health protection work programme and DHSC COVID-19 work programme). The patient identifiable HES data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness

g) monitoring and surveillance of the wider public health impacts of COVID-19.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. HES is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 3: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The patient identifiable HES data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register

(https://www.gov.uk/guidance/the-national-congenital- anomaly-and-rare-disease-registration-service-ncardrs). PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these individuals.

PURPOSE 4: (DHSC Drug and Alcohol work programme) The patient identifiable HES data provided by NHS Digital is linked to the information collected by Local Authority-commissioned providers of drug and alcohol treatment services as part of the Individual Placement and Support (IPS) programme. IPS involves the provision of enhanced support to the clients of substance misuse services to help them find employment. Participation in IPS is voluntary and the written agreement of service users is obtained for information about the IPS support they receive to be shared with PHE, and for this information to be linked by PHE to other data sets, including hospital admissions records and the information held in the PHE National Drug Treatment Monitoring System (NDTMS). The purpose for the linkage is to undertake research into the effectiveness of IPS in reducing the health harms associated with substance misuse.

PURPOSE 5: (UKHSA Health protection work programme and DHSC COVID-19 work programme) The patient identifiable HES data provided by NHS Digital is linked to the national data sets collected and managed by UKHSA on cases of communicable disease. These data sets, which include the statutory notifications of infectious diseases that all registered medical practitioners must report to UKHSA, are used by the national and local public health system in England for the purposes of diagnosing, controlling, preventing, monitoring and managing health protection incidents and outbreaks. Communicable disease reports are often missing the ethnic group of the infected patient, so the information on ethnicity recorded in HES is used by UKHSA to provide this missing demographic information. The COVID-19 pandemic has highlighted the importance of analysing communicable disease infection rates by ethnic group, so the resulting linked data is used to strengthen the UKHSA surveillance of communicable disease incidence, prevalence and outcomes across different groups. For example, the linked data is processed by the hepatitis surveillance work programme to provide more accurate statistics on infection rates across ethnic groups, and to inform policies on testing for blood borne viruses and the targeting of prevention and control measures at ethnic groups with higher infection rates and the poorest outcomes.

Linked HES & Civil Registry Deaths

PURPOSE 1: (DHSC End of life care work programme) The linked HES/Mortality data contains hospital admissions data and mortality records but no information that could be used to directly identify individual patients is provided to PHE. The data is used by PHE to undertake a range of analyses of the health status and care received by individuals at the end of their lives. It is also used to analyse the place of death and determine whether the care provided beforehand was in a hospital, a residential or nursing establishment, or at home.

PURPOSE 2: (DHSC Health Check) The linked pseudonymised HES APC and Civil Registrations (Deaths) – Summary Care Record data set for the period 01/04/2009 - 31/03/2018 will be used to fulfil the third stage of PHE’s analysis strategy to estimate the impact of NHS Health Check attendance on health outcomes. The Primary Care data set ‘NHS Health Checks’ was collected by NHS Digital under Direction on behalf of PHE, and initial analysis was conducted under DARS-NIC-201243-R7L2M.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The PCMD data provided by NHS Digital to PHE details the cause of death but includes no information that could be used to directly identify individual patients. The data is used by PHE to produce a range of statistics on cause-specific death for different demographic groups and geographic areas. These analyses are undertaken on a routine basis by PHE to support its long-term surveillance of non-communicable diseases and to support the work of local public health teams in the discharge of the statutory health improvement duty of Local Authorities.

Secondary Use Service (SUS)

PURPOSE 1: (NHS Digital National Cancer Register) SUS data is essentially an earlier, less ‘clean’ version of the HES data described above (for example, not all duplicate records have been removed) and contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. Data is only provided by NHS Digital for patients with a cancer-related ICD-10 diagnosis code.

Community Services Data Set

PURPOSE: (DHSC Healthy Lifecourse work programme) The CSDS provides information on the provision of community-based health and care services to infants, children, young people and adults. It collects data on: patient demographics, such as age, sex, address and GP registration; referrals to community, mental health and social care services; infant and childhood health screening tests and immunisations; special educational needs, child protection and safeguarding assessments; and other information about community-based services. The pseudonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in the proportions of infants and children reaching developmental milestones, and to analyse the links between child health and educational attainment. It is also used to monitor the use of community-based health and care services, and to produce a range of intelligence outputs to support the commissioning and monitoring of outcomes for community-based services. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities. The data provided by NHS Digital includes a pseudoID to enable the pseudonymised linkage by PHE of the CSDS records for infants and children to the corresponding record of their mothers from the Maternity Services Data Set (MSDS).

Emergency Care Data Set

PURPOSE 1: (DHSC Injury prevention and mental health work programmes) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the monitoring of the numbers and trends in patients attending hospital with injuries, particularly violence-related injuries, and because to self-harm. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including delivering the NHS Five Year Forward View for Mental Health and the National Crisis Care Concordat.

PURPOSE 2: (UKHSA Syndromic surveillance programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its wider duty to protect the nation’s health by providing a national integrated syndromic surveillance system.

PURPOSE 3: (NHS Digital National Cancer Register) The identifiable patient ECDS data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as ECDS) and outcomes of these patients. The ECDS data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 4: (UKHSA Health protection work programme) The patient identifiable ECDS data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. ECDS is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 5: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The patient identifiable ECDS data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register. PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as ECDS) and outcomes of these individuals. The ECDS data linked to CARD registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different rare diseases, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 6: (DHSC Drug and Alcohol work programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. One limitation of the ECDS is that it does not record detailed information on the location at which physical assaults leading to an ED attendance occur which is needed to support local violence reduction strategies. The Data Coordination Board has approved the inclusion of a new Assault_Location_Description field in ECDS to enable this free-text information to be recorded by a sample of EDs engaged in the pilot relating to this new field (DCB0092-2062 And 19/2020, ISN change specification publication date 10-Sep-2020). This pilot is being led by PHE, which will process the anonymised data provided by NHS Digital to assess the utility of the new ECDS field for supporting targeted public health interventions, and make recommendations to NHS England on whether to require the provision of this information in ECDS by all EDs. The following subset of data items provided from the pre-existing pseudonymised ECDS provided to PHE by NHS Digital will be processed by staff from the PHE Drug and Alcohol work programme for the purpose of this pilot:

1. AGE_AT_ARRIVAL

2. AGE_RANGE

3. ARRIVAL_DATE

4. ARRIVAL_MODE

5. ARRIVAL_TIME

6. ASSAULT_LOCATION_DESCRIPTION

7. CHIEF_COMPLAINT_IS_INJURY_RELATED

8. ED_COUNTY_CODE

9. ED_DISTRICT_CODE

10. ETHNIC_CATEGORY

11. ETHNIC_CATEGORY_Description

12. INJURY_ACTIVITY_STATUS

13. INJURY_ACTIVITY_TYPE

14. INJURY_ACTIVITY_TYPE_Description

15. INJURY_DATE

16. INJURY_INTENT (+description)

17. INJURY_MECHANISM (+description)

18. INJURY_TIME

19. LSOA_2011

20. PATIENT_POSTCODE_DISTRICT

21. PLACE_OF_INJURY (+description)

22. SEX

Health Survey for England (HSE)

PURPOSE: (DHSC Healthy lifestyles work programme) The HSE is a longstanding annual survey of the health and lifestyles of a sample of around 8,000 adults and 2,000 children. The HSE is carried out by NatCen Social Research on behalf of NHS Digital. The HSE data, which has been anonymised, has been published for several years on the UK Data Archive, although additional restrictions have recently been applied to this by NHS Digital to further reduce the risk of any of sample participants being identified. PHE commissioned a boost to the number of children included in the 2015 HSE and requires access to more detailed data on children in households than that ordinarily published by NHS Digital via the UK Data Archive.

Separately, PHE also requires access to a more detailed combined set of HSE data bringing together the responses to the questions on adult gambling behaviours from the 2012, 2015, 2016 and 2018 surveys than is ordinarily published by NHS Digital via the UK Data Archive.

Hospital Episode Statistics (HES)

PURPOSE 1: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of a wide range of conditions such as heart disease and stroke, mental health and respiratory disease.

PURPOSE 2: (UKHSA Health protection work programme) The HES data contains information on the numbers of maternity admissions to NHS hospitals for Covid-19 and related conditions. The HES data, which has been anonymised and provided by NHS Digital to UKHSA, is used to validate the numbers of maternity admissions identified through the processing of the more-timely SUS APC data set. Comparison of the numbers of admissions identified through separate analyses of HES and SUS APC has identified a c.10% difference. A list of the SUSSPELLIDs identified from HES is compared to the list derived from the separate analysis of SUS APC to clarify whether the difference is due to the more timely but less complete nature of SUS APC, or to methodological differences between the two sets of analyses, or to some combination of these two factors. The results of this comparison are used to refine the methodology developed to identify maternal admissions from SUS APC, which is used to support the near-real-time modelling and planning for Covid-19 and related hospital pressure and risk management by UKHSA. To note, the analysis of the SUS APC data is undertaken by a team from the former Joint Biosecurity Centre under the DSA separately agreed by JBC and NHS Digital (DARS-NIC-406871-Q9G2Q). Only the SUSSPELLIDs are shared by the (former) PHE (now UKHSA) team carrying out the analysis of HES with the (former) JBC team (now UKHSA) carrying out the analysis of SUS.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (DHSC Mental health work programme) The IAPT data set provides information on access to and outcomes for adults being treated by psychological therapy services across England. It includes patient demographic information and information on referrals to psychological therapy services, mental health assessments and the treatment provided to patients. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence and prevalence of mental health problems such as anxiety disorders and depression. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health, including delivering the NHS Five Year Forward View for Mental Health.

Maternity Services Data Set (MSDSv1)

PURPOSE: (DHSC Healthy Lifecourse work programme) The MSDS provides information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The pseudonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in maternal health, the use of obstetric and antenatal services, and child health outcomes. The results of these analyses are used to produce a range of health intelligence outputs to support the commissioning and monitoring of outcomes for maternity services. The data is also used to monitor progress in achieving the Secretary of State’s ambition to halve the number of stillbirths, neonatal and maternal deaths and brain injuries by 2030, and to monitor progress in implementing national initiatives such as the Maternity Transformation Programme. The data provided by NHS Digital includes a pseudoID to enable the pseudonymised linkage by PHE of the MSDS records of mothers to the corresponding records of their infants and children from the Community Services Data Set (CSDS). This linked data is used by PHE to analyse the impacts of maternal health and care in pregnancy with the health and developmental outcomes for their children.

Maternity Services Data Set (MSDS V2 Commissioning Extract)

PURPOSE 1: (UKHSA Health protection work programme) The MSDS V2 Commissioning Extract is an updated and expanded version of the MSDS V1 data set developed by NHS Digital to support the commissioning and provision of maternal and infant health and care services. The identifiable data provided by NHSD to UKHSA is used to monitor the effectiveness of COVID-19 vaccines in preventing hospital admissions and deaths among pregnant women and infants who have tested positive for SARS-CoV-2. This work forms part of the wider UKHSA vaccine safety and efficacy work programme – which is a core component of the UKHSA remit from the DHSC – as well as the UKHSA response to the COVID-19 pandemic. The results of the analyses of the MSDS data are used by UKHSA to analyse differences by vaccination status in COVID-19-related hospital admissions and deaths among mothers and their infants. The findings are used to advise the development of the NHS vaccination programme and the government’s ongoing response to the COVID-19 pandemic.

PURPOSE 2: (DHSC Healthy lifestyle work programme) In the course of processing the identifiable MSDS V2 Commissioning Extract for the purpose described above (MSDS V2 Commissioning Extract PURPOSE 1), UKHSA first processes the identifiable data to link to other data sets and to ensure that duplicates are removed. It then generates a pseudonymised version of this linked MSDS data set for analysis. This pseudonymised version is a necessary ‘by product’ of the processing of the identifiable MSDS data and a copy of this pseudonymised data will be provided by UKHSA on behalf of NHS Digital to DHSC to be processed in support of its healthy lifestyle work programme. This transfer is necessary because NHS Digital is unable currently to provide a pseudonymised version of the MSDS V2 Commissioning Extract for dissemination directly to DHSC. The DHSC purposes for processing this pseudonymised copy of the MSDS data are the same as for the pseudonymised MSDS V1 data previously supplied to PHE. These purposes are described in full elsewhere in this DSA (MSDS V1 PURPOSE) but in summary, the data is used to monitor numbers and trends in maternal health, use of obstetric and antenatal services, and child health outcomes, and to generate a range of health intelligence outputs to support the commissioning and monitoring of outcomes for maternity services.

Mental Health Services Data Set (MHSDS)

PURPOSE: (DHSC Mental health work programme) The MHSDS contains information on the diagnosis and treatment of patient

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (NHS Digital National Cancer Register) The CWT data linked to cancer registration records is used by PHE to analyse trends in the number of urgent referrals for suspected cancer and resulting diagnoses to understand the effectiveness of this referral route for improving patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the Cancer Services tool at https://fingertips.phe.org.uk/profile/cancerservices.

The findings derived from the linked CWT and cancer registration data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the NHS England National Cancer Strategy Implementation Plan (https://www.england.nhs.uk/cancer/strategy).

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (NHS Digital National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

Hospital Episodes Statistics (HES)

PURPOSE 1: (NHS Digital National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 2: (UKHSA Health protection work programme and DHSC COVID-19 work programme) The findings derived from the linked HES data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections (including COVID-19), the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis

and the vaccination information at

https://www.gov.uk/government/collections/vaccine-uptake and the COVID-19 dashboards at https://coronavirus.data.gov.uk.

PURPOSE 3: (NHS Digital National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network

(http://www.eurocat-network.eu/).

The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

PURPOSE 4: (DHSC Drug and Alcohol work programme) The findings derived from the linked HES data primarily are used to undertake research into the effectiveness of the IPS programme in supporting drug and alcohol treatment service users into employment, and in reducing the health harms and criminal activity associated with substance misuse. The results of the analyses of the linked data will be published in a report to the DHSC and Local Authorities and papers submitted to academic journals to inform and guide the future planning and commissioning of effective local drug and alcohol treatment services across England.

PURPOSE 5: (UKHSA Health protection work programme) The outcomes of analyses based on the enrichment of UKHSA communicable disease data sets with ethnic group information derived from linkage to HES are used to inform public health action to reduce these threats to public health. For example, the results are used to direct front-line prevention and control measures, are published in the form of aggregate statistics and tables in communicable disease surveillance reports, and are used to inform the development of national health protection policy.

Linked HES & Civil Registry Deaths

PURPOSE1: (DHSC End of life care work programme) The results of the analyses undertaken by PHE are published in the End of Life Care Profiles at

https://fingertips.phe.org.uk/.

These profiles are provided by Local Authority and Clinical Commissioning Group and are used to support local health and social care commissioning, for example by providing statistics on the place of death and nursing and care home bed rates.

PURPOSE 2: (DHSC NHS Health Check) The result of these analyses undertaken by PHE will determine the efficacy of the NHS Health Check Programme and important medical outcomes including mortality and medical events via a suite of analytical products such as reports, interactive dashboards and peer-reviewed publications for providers of the NHS Health Check, commissioners of the NHS Health Check and other stakeholders (for instance, NHS England, patients and the public, the primary care community, government, policy makers, charities, UK and international researchers) who wish to better understand the status and outcomes related to the NHS Health Check programme.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of different public health profiles at https://fingertips.phe.org.uk/. PHE also undertakes ad hoc analyses of PCMD to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs). These results of these analyses are provided directly to Local Authorities in the form of aggregate statistics and tables.

Secondary Use Service (SUS)

PURPOSE 1: (NHS Digital National Cancer Register) The linked SUS and National Cancer Register data is used by PHE for the specific purpose of producing a set of monthly-updated cancer outcomes metrics on the performance of the NHS in diagnosing and treating cancer patients as soon as possible, such as cancer stage at diagnosis and the percentage of cases diagnosed as an emergency. These metrics, as well as other statistics based on the analysis of data from the cancer register, are published at http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic_specific_work/cancer_outcome_metrics.

Community Services Data Set

PURPOSE: (DHSC Healthy Lifecourse work programme) The results of the analyses of CSDS data undertaken by PHE are published in a range of indicators, analytical tools and reports, including the child and maternal health profiles at

https://fingertips.phe.org.uk/ and https://www.gov.uk/government/collections/child-and-maternal-health-statistics.

This information is used by PHE to advise on the development and monitor the effectiveness of national child and maternal health policies and initiatives, such as investment in breastfeeding services and child and adult weight management programmes. PHE also undertakes ad hoc analyses of CSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Emergency Care Data Set

PURPOSE 1: (DHSC Injury prevention and mental health work programmes) The results of the analyses of ECDS data are published in a range of indicators, analytical tools and reports, including the crisis care profiles at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/crisis-care.

The findings derived from ECDS data are further used by PHE to monitor the effectiveness of national policies aimed at preventing injuries and self-harm, such as the National Crisis Care Concordat. This information is also used by local multi-agency partnerships to support the commissioning of violence and self-harm prevention services at a local level.

PURPOSE 2: (UKHSA Syndromic surveillance programme) The results of the analyses of ECDS data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance report published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on EDCS data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including Emergency Care Data Set data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

PURPOSE 3: (NHS Digital National Cancer Register) The results of the analyses under-taken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 4: (UKHSA Health protection work programme) The findings derived from the linked ECDS data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections, the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis and the vaccination information at https://www.gov.uk/government/collections/vaccine-uptake.

PURPOSE 5: (NHS Digital National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network

(http://www.eurocat-network.eu/).

The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

PURPOSE 6: (DHSC Drug and Alcohol work programme) The results of the locational analyses of the new ECDS Assault_Location_Description field data undertaken by PHE are used in the following ways: to make recommendations to NHS England on whether locational information on assaults should be recorded at source in EDs and, if so, the methodology for this; and provide anonymised aggregate reports on assault locations, including ‘hotspots’, to the London Violence Reduction Unit, which is based on the Greater London Authority, to assess the utility of this information for supporting the commissioning and monitoring the effectiveness of local violence reduction strategies and initiatives.

Health Survey for England

PURPOSE: (DHSC Healthy lifestyles work programme) The data which has been anonymised and provided to PHE is used to estimate excess calorie intakes for children and teenagers. The results of these analyses are providing the evidence for a national calorie reduction campaign led by PHE.

Separately, the anonymised data set on adult gambling behaviours will be used by PHE to analyse gambling prevalence and harms as part of an evidence review commissioned by the Department of Health & Social Care. (The PHE remit letter for 2019/20 from the Parliamentary Under Secretary of State for Public Health and Primary Care specifically states that “During the reporting year PHE will complete and publish evidence reviews on the public health impacts associated with prescription drug dependence and gambling”.)

Hospital Episode Statistics (HES)

PURPOSE 1: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Public Health Outcomes Framework at http://www.phoutcomes.info/. The findings derived from HES data are used to inform the development and monitor the effectiveness of national policies and initiatives aimed at protecting and improving public health and reducing health inequalities. The HES data is also analysed by PHE to produce statistics to help Local Authorities fulfil their statutory duty to improve the health of their local population, for example through the production of joint strategic needs assessments and local health and wellbeing strategies.

PURPOSE 2: (UKHSA Health protection work programme) The findings of the comparison of the numbers of maternity admissions for Covid-19 and related conditions identified through the separate analyses of HES and SUS APC are used to refine the methodology developed by UKHSA to identify maternity admissions from SUS APC. This refined methodology is used to ensure that the numbers of maternity admissions to hospital for Covid-19 and related conditions is sufficiently accurate to inform the near-real-time modelling and planning for Covid-19 and related hospital pressure and risk management by UKHSA.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (DHSC Mental health work programme) The results of the analyses of IAPT data are published in a range of indicators, analytical tools and reports, including the common mental health disorders profiling tool at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from IAPT data is also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with mental health problems, particularly the NHS Five Year Forward View for Mental Health. This information is also used by Local Authorities to support the local commissioning of mental health services.

Maternity Services Data Set (MSDS v1)

PURPOSE: (DHSC Healthy Lifecourse work programme) The results of the analyses of the MSDS data are published by PHE in a range of indicators, analytical tools and reports, including the child health profiles at

https://fingertips.phe.org.uk/profile/child-health-profiles.

This information is used by PHE to advise on the development and monitor the effectiveness of national child and maternal health policies and initiatives, such as investment in breastfeeding services and child and adult weight management programmes. PHE also undertakes ad hoc analyses of MSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Maternity Services Data Set (MSDS V2 Commissioning Extract)

PURPOSE 1: (UKHSA Health protection work programme) The results of the analyses of the linked MSDS data are used by UKHSA to advise NHS England on the development of the COVID-19 vaccination programme. The results are also used to support UKHSA, DHSC and groups such as SPI-M in advising the government on its ongoing response to the COVID-19 pandemic, particularly in relation to the vaccination programme but also the longer term impacts of COVID-19 and the vaccines on child and maternal health. The findings of the analyses will also be submitted for publication in peer reviewed academic journals.

PURPOSE 2: (DHSC Healthy lifestyle work programme) The results of the analyses of the pseudonymised version of the MSDS data will be used by DHSC to update the child and maternal health indicators previously produced by PHE but which have not been refreshed since the last extract of MSDS data was made available by NHS Digital in 2018/19. These indicators will be published in a range of profiles, reports and analytical tools for Local Authorities and the NHS.

Mental Health Services Data Set (MHSDS)

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Common Mental Health Disorders Profiling Tool at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from MHSDS are also used by PHE to develop and assess the effectiveness of national policies aimed at improving the lives of people with mental health problems, and are used by Local Authorities to support the commissioning and provision of mental health services at a local level.

National Child Measurement Programme (NCMP)

PURPOSE: (DHSC Healthy Lifecourse work programme) The data which has been anonymised and provided to PHE is used to analyse variations and trends in the percentages of children who are underweight, normal weight, overweight and obese. The data is also used to monitor how the proportions of children in these different categories changes as they progress from Reception to Year 6. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the local authority profiles at http://fingertips.phe.org.uk/profile/national-child-measurement-programme.

PHE further uses the data to provide statistics to schools on the percentage of children who are an unhealthy weight. The NCMP findings are also used by PHE to advise on and support the development of national policies to increase the proportion of children who are normal weight, and are used by Local Authorities to commission and provide services that support families to make healthy lifestyle changes.

National Diabetes Audit

PURPOSE: (DHSC Cardiovascular disease work programme) The results of the analyses of NDA data are published in a range of indicators, analytical tools and reports, including the diabetes profiles at

https://fingertips.phe.org.uk/profile/diabetes-ft.

The findings derived from NDA data are also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with diabetes, particularly supporting and evaluating the NHS Diabetes Prevention Programme. This information is also used by Local Authorities to support the local commissioning of cardiovascular prevention and treatment services.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (UKHSA Syndromic surveillance programme) The results of the analyses of NHS 111 data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance reports published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on NHS 111 data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including NHS 111 data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are being used to develop further indicators of care-giving across demographic groups and geographic areas for inclusion in the Dementia Profile published at https://fingertips.phe.org.uk/profile-group/mental-health.

The results of these analyses are being used to understand more about the care provided to people with dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Dementia Profile and the Common Mental Health Disorders profile at https://fingertips.phe.org.uk/profile-group/mental-health.

The findings of these analyses are also used to monitor progress in improving the diagnosis and treatment of dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: UKHSA Health protection work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the local authority Sexual and Reproductive Health Profiles at https://fingertips.phe.org.uk/profile/sexualhealth.

The SRHAD findings are used by PHE to develop and monitor national policies for Sexual Health and HIV, and by Local Authorities to provide SRH services to improve sexual and reproductive health across England.

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COVID-19:

(PURPOSE: UKHSA Health protection work programme and DHSC COVID-19 work programme) Covid-19 presents a significant threat to the population in terms of increased morbidity and mortality, particularly among vulnerable groups such as those with pre-existing disease. PHE epidemiological surveillance will be undertaken to monitor and describe the circulation of Covid-19 in the population, and to measure its impact on public health and the healthcare system.

PHE surveillance is required to understand how well Covid-19 response programmes are working and to inform future planning using epidemiological and modelling methods. The results of the analyses of the SUS+ APC and ECDS data linked to the SGSS, CHESS and mortality data are used by PHE to produce aggregate statistical reports that inform the national Covid-19 action plan, the health protection guidance provided to healthcare professionals and the public, and to support Covid-19-related capacity and capability planning in the NHS. Data will be received in daily extract files via MESH and linked and analysed by PHE analysts.

The statistical outputs based on the linked data are published by PHE as aggregate counts and rates (for example, at

https://www.gov.uk/government/organisations/public-health-england/about/statistics),

with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

The guidance for healthcare professionals and the public produced by PHE and other national bodies involved in the Covid-19 response is published at https://www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance.

Shielded Patient List

PURPOSE: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The findings derived from the linked SPL and NCARDRS Register data are used to measure differences in health outcomes for autoimmune rheumatic diseases patients who are on the SPL and those who are not. The findings will be used to inform the development of the national policy response and guidance on shielding to protect autoimmune rheumatic disease patients from adverse outcomes associated with COVID-19 infection and the wider pandemic response. The findings will also be submitted for publication in peer-reviewed medical journals. The statistical outputs based on the linked data are published as aggregate counts and rates, with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

Cumbrian Birth Cohort (CBC)

PURPOSE: (NHS Digital National Cancer Register) The findings derived from the linked CBC and National Cancer Register data are used to analyse and monitor cancer incidence and prevalence rates among individuals at risk of radiation exposure as a result of the 1957 Windscale/Sellafield fire. It will also be used to monitor the treatment and outcomes for those diagnosed with cancer among this cohort. The findings will be used to help measure the risk of ionising radiation exposure for cancer and submitted to the Department of Health & Social Care Committee on Medical Aspects of Radiation in the Environment (COMARE) to help inform the national and international policy response to potential future environmental exposure events. The statistical outputs based on the linked data are published as aggregate counts and rates, with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

The PHE remit letter, dated March 2018, sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2018 to March 2019: https://www.gov.uk/government/publications/phe-remit-letter-2018-to-2019

Likewise, the PHE remit letter dated March 2019 sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2019 to March 2020: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/789194/phe-priorities-in-health-and-care-2019-2020-letter.pdf

The PHE remit letter dated April 2020 sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2020 to March 2021, emphasising the focus on COVID-19: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/882570/PHE_Remit_Letter_from_Jo_Churchill_to_Duncan_Selbie.pdf

The current version of the Single DSA has not been systematically edited at this stage to remove all references to PHE, but revisions have been made to make clear which data set listed will be processed by which receiver organisation following the PHE closure. The new DSAs with the receiver organisations that in due course will replace the current Single DSA will have all references to PHE removed.

Public Health England (PHE) is the national agency charged with protecting and improving the nation’s health. It is an executive agency of the Department of Health and Social Care (DHSC) and acts on behalf of the Secretary of State to discharge his statutory duties to protect and improve public health in England, and reduce health inequalities, as set out in Sections 2A and 2B of the NHS Act 2006, as inserted by the Health and Social Care Act 2012. These functions and its annual priorities are set out in the remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care (https://www.gov.uk/government/publications/phe-remit-letter-2017-to-2018).

PHE is a direct provider of health protection and health improvement services to patients and the public in England. The successful fulfilment of its remit depends on its ability to process data on the health status of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data it uses it collects directly, but PHE also depends on appropriate and timely access to other sources of health and care data, such as the health status and healthcare provider activity data collected at a national level by NHS Digital.

PHE processes large volumes of data as part of the fulfilment of their remit and function. PHE commits to implement and comply with internal governance arrangements to ensure that access to the data they hold as data controllers, and data controllers in common, is managed in accordance with data protection regulations.

This Data Sharing Agreement (DSA) supports the statutory remit and core functions of PHE by setting out the justifications and legal basis for the sharing of specified data sets by NHS Digital with PHE.

The majority of the datasets shared between the two organisations are detailed in Section 3 of this DSA. Those additional datasets shared which are not contained in Section 3 are detailed below:

NHS 111 Repeat Caller Service Data Set – daily extract of pseudo/anonymised data (from 2013/14 M05 to latest available)

Personal Social Services Survey of Adult Carers in England (PSS- SACE) - biannual extract of pseudo/anonymised data (from 2009/10 to latest available)

Recorded Dementia Diagnoses (RDD) Data Set - annual extract of pseudo/anonymised data (from 2016/17 to latest available)

Secondary Uses Service (SUS+) - monthly extract of data provided by SUS team within NHS Digital.

Note that Daily SUS and Daily Emergency Care Dataset (ECDS) are provided by the NHS Digital’s SUS team, not by the HES Data Production team.

To note, the legal basis for PHE to process each of the datasets is General Data Protection Regulation (GDPR) Article 6(1)e (performance of a task carried out in the public interest or in the exercise of official authority vested in the controller; ) and 9(2)h (the management of the Health and Social Care system and services) and 9(2)i (public health interest). NHS Digital's legal basis to disseminate is Health & Social Care Act 2012- 261(1) other.

Please note, specific information regarding the purposes for each dissemination from NHS Digital to PHE is detailed later in this section.

For clarity, this DSA does not cover transfers of data to support the direct provision of treatment and care services to patients, such as the use by PHE of the National Health Application and Infrastructure Services (NHAIS) managed by NHS Digital to identify patients eligible to be called for screening for bowel, breast and cervical cancer as part of the NHS Cancer Screening Programmes. It also excludes transfers of data from NHS Digital to PHE for research purposes that have been approved through the Data Access Request Service (DARS) and for which individual data sharing agreements are in place.

PHE commits to ensuring that all its processing of data transferred from NHS Digital complies with: the legal framework for data protection and confidentiality; the updated Caldicott principles; other associated guidance, and the information governance assurance framework for health and care organisations codified in the Data Security and Protection Toolkit.

This single DSA differs from the standard NHS Digital data release process; there are a number of reasons for this different arrangement:

- This DSA builds on the letter from the Department of Health and Social Care (DHSC) sponsors of PHE and NHS Digital dated 26th January 2015 confirming the Department’s support for the approach set out herein to the exchange of data between the two organisations in order to support the fulfilment of their respective remits and functions. It also builds on previous Memorandum of Understanding on Data Exchange agreements between PHE and NHS Digital covering the years 2015/16, 2016/17, 2017/18 and the first half of 2018/19.

- This DSA recognises the remit and functions of NHS Digital as set out in the Health & Social Care Act 2012 and the Care Act 2014, and of PHE as set out in its annual remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care. It also recognises the specific legal gateways provided to PHE under Section 60 of the Health & Social Care Act 2001, as re-enacted by Section 251 of the NHS Act 2006 and the associated Health Service (Control of Patient Information) Regulations 2002, to lawfully process confidential patient information. PHE has also been granted specific exemptions from national data opt outs by the Secretary of State in recognition of its national role in protecting and improving public health.

With specific regard to NHS Digital data which has been pseudonymised prior to transfer to PHE, this data is released using NHS Digital powers provided under the Health & Social Care Act 2012. The controls required to ensure the risks of patients being re-identified are minimised and are set out within the overarching NHS Digital Data Sharing Framework Contract signed by PHE.

If PHE require a new dataset from NHS Digital or if the data provided from NHS Digital to PHE is used for purposes that are different from those for which the data was provided in the first instance, PHE will seek permission, via an amendment to this DSA, from NHS Digital before using the data.

Specific information regarding the purposes for processing for each dataset disseminated by NHS Digital to PHE is detailed below:

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (NHS Digital National Cancer Register) The CWT contains information on patients urgently referred for suspected cancer or to be treated for cancer in NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration-and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (including referral waiting times), treatment (including treatment waiting times) and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. The CWT data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand the impact of patient routes to diagnosis and treatment pathways on patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk.

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (NHS Digital National Cancer Register) The DIDS data contains information on the diagnostic imaging tests, such as x-rays and MRI scans, carried out on cancer patients treated in NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration- and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (such as DIDS), treatment and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. This linked data is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

Hospital Episodes Statistics (HES)

PURPOSE 1: (NHS Digital National Cancer Register) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these patients. The HES data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 2: (UKHSA Health protection work programme and DHSC COVID-19 work programme). The patient identifiable HES data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness

g) monitoring and surveillance of the wider public health impacts of COVID-19.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. HES is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 3: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The patient identifiable HES data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register

(https://www.gov.uk/guidance/the-national-congenital- anomaly-and-rare-disease-registration-service-ncardrs). PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these individuals.

PURPOSE 4: (DHSC Drug and Alcohol work programme) The patient identifiable HES data provided by NHS Digital is linked to the information collected by Local Authority-commissioned providers of drug and alcohol treatment services as part of the Individual Placement and Support (IPS) programme. IPS involves the provision of enhanced support to the clients of substance misuse services to help them find employment. Participation in IPS is voluntary and the written agreement of service users is obtained for information about the IPS support they receive to be shared with PHE, and for this information to be linked by PHE to other data sets, including hospital admissions records and the information held in the PHE National Drug Treatment Monitoring System (NDTMS). The purpose for the linkage is to undertake research into the effectiveness of IPS in reducing the health harms associated with substance misuse.

PURPOSE 5: (UKHSA Health protection work programme and DHSC COVID-19 work programme) The patient identifiable HES data provided by NHS Digital is linked to the national data sets collected and managed by UKHSA on cases of communicable disease. These data sets, which include the statutory notifications of infectious diseases that all registered medical practitioners must report to UKHSA, are used by the national and local public health system in England for the purposes of diagnosing, controlling, preventing, monitoring and managing health protection incidents and outbreaks. Communicable disease reports are often missing the ethnic group of the infected patient, so the information on ethnicity recorded in HES is used by UKHSA to provide this missing demographic information. The COVID-19 pandemic has highlighted the importance of analysing communicable disease infection rates by ethnic group, so the resulting linked data is used to strengthen the UKHSA surveillance of communicable disease incidence, prevalence and outcomes across different groups. For example, the linked data is processed by the hepatitis surveillance work programme to provide more accurate statistics on infection rates across ethnic groups, and to inform policies on testing for blood borne viruses and the targeting of prevention and control measures at ethnic groups with higher infection rates and the poorest outcomes.

Linked HES & Civil Registry Deaths

PURPOSE 1: (DHSC End of life care work programme) The linked HES/Mortality data contains hospital admissions data and mortality records but no information that could be used to directly identify individual patients is provided to PHE. The data is used by PHE to undertake a range of analyses of the health status and care received by individuals at the end of their lives. It is also used to analyse the place of death and determine whether the care provided beforehand was in a hospital, a residential or nursing establishment, or at home.

PURPOSE 2: (DHSC Health Check) The linked pseudonymised HES APC and Civil Registrations (Deaths) – Summary Care Record data set for the period 01/04/2009 - 31/03/2018 will be used to fulfil the third stage of PHE’s analysis strategy to estimate the impact of NHS Health Check attendance on health outcomes. The Primary Care data set ‘NHS Health Checks’ was collected by NHS Digital under Direction on behalf of PHE, and initial analysis was conducted under DARS-NIC-201243-R7L2M.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The PCMD data provided by NHS Digital to PHE details the cause of death but includes no information that could be used to directly identify individual patients. The data is used by PHE to produce a range of statistics on cause-specific death for different demographic groups and geographic areas. These analyses are undertaken on a routine basis by PHE to support its long-term surveillance of non-communicable diseases and to support the work of local public health teams in the discharge of the statutory health improvement duty of Local Authorities.

Secondary Use Service (SUS)

PURPOSE 1: (NHS Digital National Cancer Register) SUS data is essentially an earlier, less ‘clean’ version of the HES data described above (for example, not all duplicate records have been removed) and contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. Data is only provided by NHS Digital for patients with a cancer-related ICD-10 diagnosis code.

Community Services Data Set

PURPOSE: (DHSC Healthy Lifecourse work programme) The CSDS provides information on the provision of community-based health and care services to infants, children, young people and adults. It collects data on: patient demographics, such as age, sex, address and GP registration; referrals to community, mental health and social care services; infant and childhood health screening tests and immunisations; special educational needs, child protection and safeguarding assessments; and other information about community-based services. The pseudonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in the proportions of infants and children reaching developmental milestones, and to analyse the links between child health and educational attainment. It is also used to monitor the use of community-based health and care services, and to produce a range of intelligence outputs to support the commissioning and monitoring of outcomes for community-based services. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities. The data provided by NHS Digital includes a pseudoID to enable the pseudonymised linkage by PHE of the CSDS records for infants and children to the corresponding record of their mothers from the Maternity Services Data Set (MSDS).

Emergency Care Data Set

PURPOSE 1: (DHSC Injury prevention and mental health work programmes) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the monitoring of the numbers and trends in patients attending hospital with injuries, particularly violence-related injuries, and because to self-harm. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including delivering the NHS Five Year Forward View for Mental Health and the National Crisis Care Concordat.

PURPOSE 2: (UKHSA Syndromic surveillance programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its wider duty to protect the nation’s health by providing a national integrated syndromic surveillance system.

PURPOSE 3: (NHS Digital National Cancer Register) The identifiable patient ECDS data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as ECDS) and outcomes of these patients. The ECDS data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 4: (UKHSA Health protection work programme) The patient identifiable ECDS data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. ECDS is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 5: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The patient identifiable ECDS data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register. PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as ECDS) and outcomes of these individuals. The ECDS data linked to CARD registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different rare diseases, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 6: (DHSC Drug and Alcohol work programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. One limitation of the ECDS is that it does not record detailed information on the location at which physical assaults leading to an ED attendance occur which is needed to support local violence reduction strategies. The Data Coordination Board has approved the inclusion of a new Assault_Location_Description field in ECDS to enable this free-text information to be recorded by a sample of EDs engaged in the pilot relating to this new field (DCB0092-2062 And 19/2020, ISN change specification publication date 10-Sep-2020). This pilot is being led by PHE, which will process the anonymised data provided by NHS Digital to assess the utility of the new ECDS field for supporting targeted public health interventions, and make recommendations to NHS England on whether to require the provision of this information in ECDS by all EDs. The following subset of data items provided from the pre-existing pseudonymised ECDS provided to PHE by NHS Digital will be processed by staff from the PHE Drug and Alcohol work programme for the purpose of this pilot:

1. AGE_AT_ARRIVAL

2. AGE_RANGE

3. ARRIVAL_DATE

4. ARRIVAL_MODE

5. ARRIVAL_TIME

6. ASSAULT_LOCATION_DESCRIPTION

7. CHIEF_COMPLAINT_IS_INJURY_RELATED

8. ED_COUNTY_CODE

9. ED_DISTRICT_CODE

10. ETHNIC_CATEGORY

11. ETHNIC_CATEGORY_Description

12. INJURY_ACTIVITY_STATUS

13. INJURY_ACTIVITY_TYPE

14. INJURY_ACTIVITY_TYPE_Description

15. INJURY_DATE

16. INJURY_INTENT (+description)

17. INJURY_MECHANISM (+description)

18. INJURY_TIME

19. LSOA_2011

20. PATIENT_POSTCODE_DISTRICT

21. PLACE_OF_INJURY (+description)

22. SEX

Health Survey for England (HSE)

PURPOSE: (DHSC Healthy lifestyles work programme) The HSE is a longstanding annual survey of the health and lifestyles of a sample of around 8,000 adults and 2,000 children. The HSE is carried out by NatCen Social Research on behalf of NHS Digital. The HSE data, which has been anonymised, has been published for several years on the UK Data Archive, although additional restrictions have recently been applied to this by NHS Digital to further reduce the risk of any of sample participants being identified. PHE commissioned a boost to the number of children included in the 2015 HSE and requires access to more detailed data on children in households than that ordinarily published by NHS Digital via the UK Data Archive.

Separately, PHE also requires access to a more detailed combined set of HSE data bringing together the responses to the questions on adult gambling behaviours from the 2012, 2015, 2016 and 2018 surveys than is ordinarily published by NHS Digital via the UK Data Archive.

Hospital Episode Statistics (HES)

PURPOSE 1: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of a wide range of conditions such as heart disease and stroke, mental health and respiratory disease.

PURPOSE 2: (UKHSA Health protection work programme) The HES data contains information on the numbers of maternity admissions to NHS hospitals for Covid-19 and related conditions. The HES data, which has been anonymised and provided by NHS Digital to UKHSA, is used to validate the numbers of maternity admissions identified through the processing of the more-timely SUS APC data set. Comparison of the numbers of admissions identified through separate analyses of HES and SUS APC has identified a c.10% difference. A list of the SUSSPELLIDs identified from HES is compared to the list derived from the separate analysis of SUS APC to clarify whether the difference is due to the more timely but less complete nature of SUS APC, or to methodological differences between the two sets of analyses, or to some combination of these two factors. The results of this comparison are used to refine the methodology developed to identify maternal admissions from SUS APC, which is used to support the near-real-time modelling and planning for Covid-19 and related hospital pressure and risk management by UKHSA. To note, the analysis of the SUS APC data is undertaken by a team from the former Joint Biosecurity Centre under the DSA separately agreed by JBC and NHS Digital (DARS-NIC-406871-Q9G2Q). Only the SUSSPELLIDs are shared by the (former) PHE (now UKHSA) team carrying out the analysis of HES with the (former) JBC team (now UKHSA) carrying out the analysis of SUS.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (DHSC Mental health work programme) The IAPT data set provides information on access to and outcomes for adults being treated by psychological therapy services across England. It includes patient demographic information and information on referrals to psychological therapy services, mental health assessments and the treatment provided to patients. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence and prevalence of mental health problems such as anxiety disorders and depression. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health, including delivering the NHS Five Year Forward View for Mental Health.

Maternity Services Data Set (MSDSv1)

PURPOSE: (DHSC Healthy Lifecourse work programme) The MSDS provides information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The pseudonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in maternal health, the use of obstetric and antenatal services, and child health outcomes. The results of these analyses are used to produce a range of health intelligence outputs to support the commissioning and monitoring of outcomes for maternity services. The data is also used to monitor progress in achieving the Secretary of State’s ambition to halve the number of stillbirths, neonatal and maternal deaths and brain injuries by 2030, and to monitor progress in implementing national initiatives such as the Maternity Transformation Programme. The data provided by NHS Digital includes a pseudoID to enable the pseudonymised linkage by PHE of the MSDS records of mothers to the corresponding records of their infants and children from the Community Services Data Set (CSDS). This linked data is used by PHE to analyse the impacts of maternal health and care in pregnancy with the health and developmental outcomes for their children.

Maternity Services Data Set (MSDS V2 Commissioning Extract)

PURPOSE 1: (UKHSA Health protection work programme) The MSDS V2 Commissioning Extract is an updated and expanded version of the MSDS V1 data set developed by NHS Digital to support the commissioning and provision of maternal and infant health and care services. The identifiable data provided by NHSD to UKHSA is used to monitor the effectiveness of COVID-19 vaccines in preventing hospital admissions and deaths among pregnant women and infants who have tested positive for SARS-CoV-2. This work forms part of the wider UKHSA vaccine safety and efficacy work programme – which is a core component of the UKHSA remit from the DHSC – as well as the UKHSA response to the COVID-19 pandemic. The results of the analyses of the MSDS data are used by UKHSA to analyse differences by vaccination status in COVID-19-related hospital admissions and deaths among mothers and their infants. The findings are used to advise the development of the NHS vaccination programme and the government’s ongoing response to the COVID-19 pandemic.

PURPOSE 2: (DHSC Healthy lifestyle work programme) In the course of processing the identifiable MSDS V2 Commissioning Extract for the purpose described above (MSDS V2 Commissioning Extract PURPOSE 1), UKHSA first processes the identifiable data to link to other data sets and to ensure that duplicates are removed. It then generates a pseudonymised version of this linked MSDS data set for analysis. This pseudonymised version is a necessary ‘by product’ of the processing of the identifiable MSDS data and a copy of this pseudonymised data will be provided by UKHSA on behalf of NHS Digital to DHSC to be processed in support of its healthy lifestyle work programme. This transfer is necessary because NHS Digital is unable currently to provide a pseudonymised version of the MSDS V2 Commissioning Extract for dissemination directly to DHSC. The DHSC purposes for processing this pseudonymised copy of the MSDS data are the same as for the pseudonymised MSDS V1 data previously supplied to PHE. These purposes are described in full elsewhere in this DSA (MSDS V1 PURPOSE) but in summary, the data is used to monitor numbers and trends in maternal health, use of obstetric and antenatal services, and child health outcomes, and to generate a range of health intelligence outputs to support the commissioning and monitoring of outcomes for maternity services.

Mental Health Services Data Set (MHSDS)

PURPOSE: (DHSC Mental health work programme) The MHSDS contains information on the diagnosis and treatment of patient

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (NHS Digital National Cancer Register) The CWT data linked to cancer registration records is used by PHE to analyse trends in the number of urgent referrals for suspected cancer and resulting diagnoses to understand the effectiveness of this referral route for improving patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the Cancer Services tool at https://fingertips.phe.org.uk/profile/cancerservices.

The findings derived from the linked CWT and cancer registration data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the NHS England National Cancer Strategy Implementation Plan (https://www.england.nhs.uk/cancer/strategy).

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (NHS Digital National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

Hospital Episodes Statistics (HES)

PURPOSE 1: (NHS Digital National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 2: (UKHSA Health protection work programme and DHSC COVID-19 work programme) The findings derived from the linked HES data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections (including COVID-19), the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis

and the vaccination information at

https://www.gov.uk/government/collections/vaccine-uptake and the COVID-19 dashboards at https://coronavirus.data.gov.uk.

PURPOSE 3: (NHS Digital National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network

(http://www.eurocat-network.eu/).

The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

PURPOSE 4: (DHSC Drug and Alcohol work programme) The findings derived from the linked HES data primarily are used to undertake research into the effectiveness of the IPS programme in supporting drug and alcohol treatment service users into employment, and in reducing the health harms and criminal activity associated with substance misuse. The results of the analyses of the linked data will be published in a report to the DHSC and Local Authorities and papers submitted to academic journals to inform and guide the future planning and commissioning of effective local drug and alcohol treatment services across England.

PURPOSE 5: (UKHSA Health protection work programme) The outcomes of analyses based on the enrichment of UKHSA communicable disease data sets with ethnic group information derived from linkage to HES are used to inform public health action to reduce these threats to public health. For example, the results are used to direct front-line prevention and control measures, are published in the form of aggregate statistics and tables in communicable disease surveillance reports, and are used to inform the development of national health protection policy.

Linked HES & Civil Registry Deaths

PURPOSE1: (DHSC End of life care work programme) The results of the analyses undertaken by PHE are published in the End of Life Care Profiles at

https://fingertips.phe.org.uk/.

These profiles are provided by Local Authority and Clinical Commissioning Group and are used to support local health and social care commissioning, for example by providing statistics on the place of death and nursing and care home bed rates.

PURPOSE 2: (DHSC NHS Health Check) The result of these analyses undertaken by PHE will determine the efficacy of the NHS Health Check Programme and important medical outcomes including mortality and medical events via a suite of analytical products such as reports, interactive dashboards and peer-reviewed publications for providers of the NHS Health Check, commissioners of the NHS Health Check and other stakeholders (for instance, NHS England, patients and the public, the primary care community, government, policy makers, charities, UK and international researchers) who wish to better understand the status and outcomes related to the NHS Health Check programme.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of different public health profiles at https://fingertips.phe.org.uk/. PHE also undertakes ad hoc analyses of PCMD to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs). These results of these analyses are provided directly to Local Authorities in the form of aggregate statistics and tables.

Secondary Use Service (SUS)

PURPOSE 1: (NHS Digital National Cancer Register) The linked SUS and National Cancer Register data is used by PHE for the specific purpose of producing a set of monthly-updated cancer outcomes metrics on the performance of the NHS in diagnosing and treating cancer patients as soon as possible, such as cancer stage at diagnosis and the percentage of cases diagnosed as an emergency. These metrics, as well as other statistics based on the analysis of data from the cancer register, are published at http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic_specific_work/cancer_outcome_metrics.

Community Services Data Set

PURPOSE: (DHSC Healthy Lifecourse work programme) The results of the analyses of CSDS data undertaken by PHE are published in a range of indicators, analytical tools and reports, including the child and maternal health profiles at

https://fingertips.phe.org.uk/ and https://www.gov.uk/government/collections/child-and-maternal-health-statistics.

This information is used by PHE to advise on the development and monitor the effectiveness of national child and maternal health policies and initiatives, such as investment in breastfeeding services and child and adult weight management programmes. PHE also undertakes ad hoc analyses of CSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Emergency Care Data Set

PURPOSE 1: (DHSC Injury prevention and mental health work programmes) The results of the analyses of ECDS data are published in a range of indicators, analytical tools and reports, including the crisis care profiles at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/crisis-care.

The findings derived from ECDS data are further used by PHE to monitor the effectiveness of national policies aimed at preventing injuries and self-harm, such as the National Crisis Care Concordat. This information is also used by local multi-agency partnerships to support the commissioning of violence and self-harm prevention services at a local level.

PURPOSE 2: (UKHSA Syndromic surveillance programme) The results of the analyses of ECDS data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance report published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on EDCS data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including Emergency Care Data Set data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

PURPOSE 3: (NHS Digital National Cancer Register) The results of the analyses under-taken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 4: (UKHSA Health protection work programme) The findings derived from the linked ECDS data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections, the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis and the vaccination information at https://www.gov.uk/government/collections/vaccine-uptake.

PURPOSE 5: (NHS Digital National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network

(http://www.eurocat-network.eu/).

The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

PURPOSE 6: (DHSC Drug and Alcohol work programme) The results of the locational analyses of the new ECDS Assault_Location_Description field data undertaken by PHE are used in the following ways: to make recommendations to NHS England on whether locational information on assaults should be recorded at source in EDs and, if so, the methodology for this; and provide anonymised aggregate reports on assault locations, including ‘hotspots’, to the London Violence Reduction Unit, which is based on the Greater London Authority, to assess the utility of this information for supporting the commissioning and monitoring the effectiveness of local violence reduction strategies and initiatives.

Health Survey for England

PURPOSE: (DHSC Healthy lifestyles work programme) The data which has been anonymised and provided to PHE is used to estimate excess calorie intakes for children and teenagers. The results of these analyses are providing the evidence for a national calorie reduction campaign led by PHE.

Separately, the anonymised data set on adult gambling behaviours will be used by PHE to analyse gambling prevalence and harms as part of an evidence review commissioned by the Department of Health & Social Care. (The PHE remit letter for 2019/20 from the Parliamentary Under Secretary of State for Public Health and Primary Care specifically states that “During the reporting year PHE will complete and publish evidence reviews on the public health impacts associated with prescription drug dependence and gambling”.)

Hospital Episode Statistics (HES)

PURPOSE 1: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Public Health Outcomes Framework at http://www.phoutcomes.info/. The findings derived from HES data are used to inform the development and monitor the effectiveness of national policies and initiatives aimed at protecting and improving public health and reducing health inequalities. The HES data is also analysed by PHE to produce statistics to help Local Authorities fulfil their statutory duty to improve the health of their local population, for example through the production of joint strategic needs assessments and local health and wellbeing strategies.

PURPOSE 2: (UKHSA Health protection work programme) The findings of the comparison of the numbers of maternity admissions for Covid-19 and related conditions identified through the separate analyses of HES and SUS APC are used to refine the methodology developed by UKHSA to identify maternity admissions from SUS APC. This refined methodology is used to ensure that the numbers of maternity admissions to hospital for Covid-19 and related conditions is sufficiently accurate to inform the near-real-time modelling and planning for Covid-19 and related hospital pressure and risk management by UKHSA.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (DHSC Mental health work programme) The results of the analyses of IAPT data are published in a range of indicators, analytical tools and reports, including the common mental health disorders profiling tool at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from IAPT data is also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with mental health problems, particularly the NHS Five Year Forward View for Mental Health. This information is also used by Local Authorities to support the local commissioning of mental health services.

Maternity Services Data Set (MSDS v1)

PURPOSE: (DHSC Healthy Lifecourse work programme) The results of the analyses of the MSDS data are published by PHE in a range of indicators, analytical tools and reports, including the child health profiles at

https://fingertips.phe.org.uk/profile/child-health-profiles.

This information is used by PHE to advise on the development and monitor the effectiveness of national child and maternal health policies and initiatives, such as investment in breastfeeding services and child and adult weight management programmes. PHE also undertakes ad hoc analyses of MSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Maternity Services Data Set (MSDS V2 Commissioning Extract)

PURPOSE 1: (UKHSA Health protection work programme) The results of the analyses of the linked MSDS data are used by UKHSA to advise NHS England on the development of the COVID-19 vaccination programme. The results are also used to support UKHSA, DHSC and groups such as SPI-M in advising the government on its ongoing response to the COVID-19 pandemic, particularly in relation to the vaccination programme but also the longer term impacts of COVID-19 and the vaccines on child and maternal health. The findings of the analyses will also be submitted for publication in peer reviewed academic journals.

PURPOSE 2: (DHSC Healthy lifestyle work programme) The results of the analyses of the pseudonymised version of the MSDS data will be used by DHSC to update the child and maternal health indicators previously produced by PHE but which have not been refreshed since the last extract of MSDS data was made available by NHS Digital in 2018/19. These indicators will be published in a range of profiles, reports and analytical tools for Local Authorities and the NHS.

Mental Health Services Data Set (MHSDS)

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Common Mental Health Disorders Profiling Tool at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from MHSDS are also used by PHE to develop and assess the effectiveness of national policies aimed at improving the lives of people with mental health problems, and are used by Local Authorities to support the commissioning and provision of mental health services at a local level.

National Child Measurement Programme (NCMP)

PURPOSE: (DHSC Healthy Lifecourse work programme) The data which has been anonymised and provided to PHE is used to analyse variations and trends in the percentages of children who are underweight, normal weight, overweight and obese. The data is also used to monitor how the proportions of children in these different categories changes as they progress from Reception to Year 6. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the local authority profiles at http://fingertips.phe.org.uk/profile/national-child-measurement-programme.

PHE further uses the data to provide statistics to schools on the percentage of children who are an unhealthy weight. The NCMP findings are also used by PHE to advise on and support the development of national policies to increase the proportion of children who are normal weight, and are used by Local Authorities to commission and provide services that support families to make healthy lifestyle changes.

National Diabetes Audit

PURPOSE: (DHSC Cardiovascular disease work programme) The results of the analyses of NDA data are published in a range of indicators, analytical tools and reports, including the diabetes profiles at

https://fingertips.phe.org.uk/profile/diabetes-ft.

The findings derived from NDA data are also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with diabetes, particularly supporting and evaluating the NHS Diabetes Prevention Programme. This information is also used by Local Authorities to support the local commissioning of cardiovascular prevention and treatment services.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (UKHSA Syndromic surveillance programme) The results of the analyses of NHS 111 data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance reports published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on NHS 111 data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including NHS 111 data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are being used to develop further indicators of care-giving across demographic groups and geographic areas for inclusion in the Dementia Profile published at https://fingertips.phe.org.uk/profile-group/mental-health.

The results of these analyses are being used to understand more about the care provided to people with dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Dementia Profile and the Common Mental Health Disorders profile at https://fingertips.phe.org.uk/profile-group/mental-health.

The findings of these analyses are also used to monitor progress in improving the diagnosis and treatment of dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: UKHSA Health protection work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the local authority Sexual and Reproductive Health Profiles at https://fingertips.phe.org.uk/profile/sexualhealth.

The SRHAD findings are used by PHE to develop and monitor national policies for Sexual Health and HIV, and by Local Authorities to provide SRH services to improve sexual and reproductive health across England.

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COVID-19:

(PURPOSE: UKHSA Health protection work programme and DHSC COVID-19 work programme) Covid-19 presents a significant threat to the population in terms of increased morbidity and mortality, particularly among vulnerable groups such as those with pre-existing disease. PHE epidemiological surveillance will be undertaken to monitor and describe the circulation of Covid-19 in the population, and to measure its impact on public health and the healthcare system.

PHE surveillance is required to understand how well Covid-19 response programmes are working and to inform future planning using epidemiological and modelling methods. The results of the analyses of the SUS+ APC and ECDS data linked to the SGSS, CHESS and mortality data are used by PHE to produce aggregate statistical reports that inform the national Covid-19 action plan, the health protection guidance provided to healthcare professionals and the public, and to support Covid-19-related capacity and capability planning in the NHS. Data will be received in daily extract files via MESH and linked and analysed by PHE analysts.

The statistical outputs based on the linked data are published by PHE as aggregate counts and rates (for example, at

https://www.gov.uk/government/organisations/public-health-england/about/statistics),

with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

The guidance for healthcare professionals and the public produced by PHE and other national bodies involved in the Covid-19 response is published at https://www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance.

Shielded Patient List

PURPOSE: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The findings derived from the linked SPL and NCARDRS Register data are used to measure differences in health outcomes for autoimmune rheumatic diseases patients who are on the SPL and those who are not. The findings will be used to inform the development of the national policy response and guidance on shielding to protect autoimmune rheumatic disease patients from adverse outcomes associated with COVID-19 infection and the wider pandemic response. The findings will also be submitted for publication in peer-reviewed medical journals. The statistical outputs based on the linked data are published as aggregate counts and rates, with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

Cumbrian Birth Cohort (CBC)

PURPOSE: (NHS Digital National Cancer Register) The findings derived from the linked CBC and National Cancer Register data are used to analyse and monitor cancer incidence and prevalence rates among individuals at risk of radiation exposure as a result of the 1957 Windscale/Sellafield fire. It will also be used to monitor the treatment and outcomes for those diagnosed with cancer among this cohort. The findings will be used to help measure the risk of ionising radiation exposure for cancer and submitted to the Department of Health & Social Care Committee on Medical Aspects of Radiation in the Environment (COMARE) to help inform the national and international policy response to potential future environmental exposure events. The statistical outputs based on the linked data are published as aggregate counts and rates, with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

The PHE remit letter, dated March 2018, sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2018 to March 2019: https://www.gov.uk/government/publications/phe-remit-letter-2018-to-2019

Likewise, the PHE remit letter dated March 2019 sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2019 to March 2020: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/789194/phe-priorities-in-health-and-care-2019-2020-letter.pdf

The PHE remit letter dated April 2020 sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2020 to March 2021, emphasising the focus on COVID-19: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/882570/PHE_Remit_Letter_from_Jo_Churchill_to_Duncan_Selbie.pdf

The current version of the Single DSA has not been systematically edited at this stage to remove all references to PHE, but revisions have been made to make clear which data set listed will be processed by which receiver organisation following the PHE closure. The new DSAs with the receiver organisations that in due course will replace the current Single DSA will have all references to PHE removed.

Public Health England (PHE) is the national agency charged with protecting and improving the nation’s health. It is an executive agency of the Department of Health and Social Care (DHSC) and acts on behalf of the Secretary of State to discharge his statutory duties to protect and improve public health in England, and reduce health inequalities, as set out in Sections 2A and 2B of the NHS Act 2006, as inserted by the Health and Social Care Act 2012. These functions and its annual priorities are set out in the remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care (https://www.gov.uk/government/publications/phe-remit-letter-2017-to-2018).

PHE is a direct provider of health protection and health improvement services to patients and the public in England. The successful fulfilment of its remit depends on its ability to process data on the health status of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data it uses it collects directly, but PHE also depends on appropriate and timely access to other sources of health and care data, such as the health status and healthcare provider activity data collected at a national level by NHS Digital.

PHE processes large volumes of data as part of the fulfilment of their remit and function. PHE commits to implement and comply with internal governance arrangements to ensure that access to the data they hold as data controllers, and data controllers in common, is managed in accordance with data protection regulations.

This Data Sharing Agreement (DSA) supports the statutory remit and core functions of PHE by setting out the justifications and legal basis for the sharing of specified data sets by NHS Digital with PHE.

The majority of the datasets shared between the two organisations are detailed in Section 3 of this DSA. Those additional datasets shared which are not contained in Section 3 are detailed below:

NHS 111 Repeat Caller Service Data Set – daily extract of pseudo/anonymised data (from 2013/14 M05 to latest available)

Personal Social Services Survey of Adult Carers in England (PSS- SACE) - biannual extract of pseudo/anonymised data (from 2009/10 to latest available)

Recorded Dementia Diagnoses (RDD) Data Set - annual extract of pseudo/anonymised data (from 2016/17 to latest available)

Secondary Uses Service (SUS+) - monthly extract of data provided by SUS team within NHS Digital.

Note that Daily SUS and Daily Emergency Care Dataset (ECDS) are provided by the NHS Digital’s SUS team, not by the HES Data Production team.

To note, the legal basis for PHE to process each of the datasets is General Data Protection Regulation (GDPR) Article 6(1)e (performance of a task carried out in the public interest or in the exercise of official authority vested in the controller; ) and 9(2)h (the management of the Health and Social Care system and services) and 9(2)i (public health interest). NHS Digital's legal basis to disseminate is Health & Social Care Act 2012- 261(1) other.

Please note, specific information regarding the purposes for each dissemination from NHS Digital to PHE is detailed later in this section.

For clarity, this DSA does not cover transfers of data to support the direct provision of treatment and care services to patients, such as the use by PHE of the National Health Application and Infrastructure Services (NHAIS) managed by NHS Digital to identify patients eligible to be called for screening for bowel, breast and cervical cancer as part of the NHS Cancer Screening Programmes. It also excludes transfers of data from NHS Digital to PHE for research purposes that have been approved through the Data Access Request Service (DARS) and for which individual data sharing agreements are in place.

PHE commits to ensuring that all its processing of data transferred from NHS Digital complies with: the legal framework for data protection and confidentiality; the updated Caldicott principles; other associated guidance, and the information governance assurance framework for health and care organisations codified in the Data Security and Protection Toolkit.

This single DSA differs from the standard NHS Digital data release process; there are a number of reasons for this different arrangement:

- This DSA builds on the letter from the Department of Health and Social Care (DHSC) sponsors of PHE and NHS Digital dated 26th January 2015 confirming the Department’s support for the approach set out herein to the exchange of data between the two organisations in order to support the fulfilment of their respective remits and functions. It also builds on previous Memorandum of Understanding on Data Exchange agreements between PHE and NHS Digital covering the years 2015/16, 2016/17, 2017/18 and the first half of 2018/19.

- This DSA recognises the remit and functions of NHS Digital as set out in the Health & Social Care Act 2012 and the Care Act 2014, and of PHE as set out in its annual remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care. It also recognises the specific legal gateways provided to PHE under Section 60 of the Health & Social Care Act 2001, as re-enacted by Section 251 of the NHS Act 2006 and the associated Health Service (Control of Patient Information) Regulations 2002, to lawfully process confidential patient information. PHE has also been granted specific exemptions from national data opt outs by the Secretary of State in recognition of its national role in protecting and improving public health.

With specific regard to NHS Digital data which has been pseudonymised prior to transfer to PHE, this data is released using NHS Digital powers provided under the Health & Social Care Act 2012. The controls required to ensure the risks of patients being re-identified are minimised and are set out within the overarching NHS Digital Data Sharing Framework Contract signed by PHE.

If PHE require a new dataset from NHS Digital or if the data provided from NHS Digital to PHE is used for purposes that are different from those for which the data was provided in the first instance, PHE will seek permission, via an amendment to this DSA, from NHS Digital before using the data.

Specific information regarding the purposes for processing for each dataset disseminated by NHS Digital to PHE is detailed below:

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (NHS Digital National Cancer Register) The CWT contains information on patients urgently referred for suspected cancer or to be treated for cancer in NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration-and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (including referral waiting times), treatment (including treatment waiting times) and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. The CWT data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand the impact of patient routes to diagnosis and treatment pathways on patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk.

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (NHS Digital National Cancer Register) The DIDS data contains information on the diagnostic imaging tests, such as x-rays and MRI scans, carried out on cancer patients treated in NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration- and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (such as DIDS), treatment and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. This linked data is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

Hospital Episodes Statistics (HES)

PURPOSE 1: (NHS Digital National Cancer Register) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these patients. The HES data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 2: (UKHSA Health protection work programme and DHSC COVID-19 work programme). The patient identifiable HES data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness

g) monitoring and surveillance of the wider public health impacts of COVID-19.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. HES is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 3: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The patient identifiable HES data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register

(https://www.gov.uk/guidance/the-national-congenital- anomaly-and-rare-disease-registration-service-ncardrs). PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these individuals.

PURPOSE 4: (DHSC Drug and Alcohol work programme) The patient identifiable HES data provided by NHS Digital is linked to the information collected by Local Authority-commissioned providers of drug and alcohol treatment services as part of the Individual Placement and Support (IPS) programme. IPS involves the provision of enhanced support to the clients of substance misuse services to help them find employment. Participation in IPS is voluntary and the written agreement of service users is obtained for information about the IPS support they receive to be shared with PHE, and for this information to be linked by PHE to other data sets, including hospital admissions records and the information held in the PHE National Drug Treatment Monitoring System (NDTMS). The purpose for the linkage is to undertake research into the effectiveness of IPS in reducing the health harms associated with substance misuse.

PURPOSE 5: (UKHSA Health protection work programme and DHSC COVID-19 work programme) The patient identifiable HES data provided by NHS Digital is linked to the national data sets collected and managed by UKHSA on cases of communicable disease. These data sets, which include the statutory notifications of infectious diseases that all registered medical practitioners must report to UKHSA, are used by the national and local public health system in England for the purposes of diagnosing, controlling, preventing, monitoring and managing health protection incidents and outbreaks. Communicable disease reports are often missing the ethnic group of the infected patient, so the information on ethnicity recorded in HES is used by UKHSA to provide this missing demographic information. The COVID-19 pandemic has highlighted the importance of analysing communicable disease infection rates by ethnic group, so the resulting linked data is used to strengthen the UKHSA surveillance of communicable disease incidence, prevalence and outcomes across different groups. For example, the linked data is processed by the hepatitis surveillance work programme to provide more accurate statistics on infection rates across ethnic groups, and to inform policies on testing for blood borne viruses and the targeting of prevention and control measures at ethnic groups with higher infection rates and the poorest outcomes.

Linked HES & Civil Registry Deaths

PURPOSE 1: (DHSC End of life care work programme) The linked HES/Mortality data contains hospital admissions data and mortality records but no information that could be used to directly identify individual patients is provided to PHE. The data is used by PHE to undertake a range of analyses of the health status and care received by individuals at the end of their lives. It is also used to analyse the place of death and determine whether the care provided beforehand was in a hospital, a residential or nursing establishment, or at home.

PURPOSE 2: (DHSC Health Check) The linked pseudonymised HES APC and Civil Registrations (Deaths) – Summary Care Record data set for the period 01/04/2009 - 31/03/2018 will be used to fulfil the third stage of PHE’s analysis strategy to estimate the impact of NHS Health Check attendance on health outcomes. The Primary Care data set ‘NHS Health Checks’ was collected by NHS Digital under Direction on behalf of PHE, and initial analysis was conducted under DARS-NIC-201243-R7L2M.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The PCMD data provided by NHS Digital to PHE details the cause of death but includes no information that could be used to directly identify individual patients. The data is used by PHE to produce a range of statistics on cause-specific death for different demographic groups and geographic areas. These analyses are undertaken on a routine basis by PHE to support its long-term surveillance of non-communicable diseases and to support the work of local public health teams in the discharge of the statutory health improvement duty of Local Authorities.

Secondary Use Service (SUS)

PURPOSE 1: (NHS Digital National Cancer Register) SUS data is essentially an earlier, less ‘clean’ version of the HES data described above (for example, not all duplicate records have been removed) and contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. Data is only provided by NHS Digital for patients with a cancer-related ICD-10 diagnosis code.

Community Services Data Set

PURPOSE: (DHSC Healthy Lifecourse work programme) The CSDS provides information on the provision of community-based health and care services to infants, children, young people and adults. It collects data on: patient demographics, such as age, sex, address and GP registration; referrals to community, mental health and social care services; infant and childhood health screening tests and immunisations; special educational needs, child protection and safeguarding assessments; and other information about community-based services. The pseudonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in the proportions of infants and children reaching developmental milestones, and to analyse the links between child health and educational attainment. It is also used to monitor the use of community-based health and care services, and to produce a range of intelligence outputs to support the commissioning and monitoring of outcomes for community-based services. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities. The data provided by NHS Digital includes a pseudoID to enable the pseudonymised linkage by PHE of the CSDS records for infants and children to the corresponding record of their mothers from the Maternity Services Data Set (MSDS).

Emergency Care Data Set

PURPOSE 1: (DHSC Injury prevention and mental health work programmes) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the monitoring of the numbers and trends in patients attending hospital with injuries, particularly violence-related injuries, and because to self-harm. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including delivering the NHS Five Year Forward View for Mental Health and the National Crisis Care Concordat.

PURPOSE 2: (UKHSA Syndromic surveillance programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its wider duty to protect the nation’s health by providing a national integrated syndromic surveillance system.

PURPOSE 3: (NHS Digital National Cancer Register) The identifiable patient ECDS data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as ECDS) and outcomes of these patients. The ECDS data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 4: (UKHSA Health protection work programme) The patient identifiable ECDS data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. ECDS is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 5: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The patient identifiable ECDS data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register. PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as ECDS) and outcomes of these individuals. The ECDS data linked to CARD registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different rare diseases, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 6: (DHSC Drug and Alcohol work programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. One limitation of the ECDS is that it does not record detailed information on the location at which physical assaults leading to an ED attendance occur which is needed to support local violence reduction strategies. The Data Coordination Board has approved the inclusion of a new Assault_Location_Description field in ECDS to enable this free-text information to be recorded by a sample of EDs engaged in the pilot relating to this new field (DCB0092-2062 And 19/2020, ISN change specification publication date 10-Sep-2020). This pilot is being led by PHE, which will process the anonymised data provided by NHS Digital to assess the utility of the new ECDS field for supporting targeted public health interventions, and make recommendations to NHS England on whether to require the provision of this information in ECDS by all EDs. The following subset of data items provided from the pre-existing pseudonymised ECDS provided to PHE by NHS Digital will be processed by staff from the PHE Drug and Alcohol work programme for the purpose of this pilot:

1. AGE_AT_ARRIVAL

2. AGE_RANGE

3. ARRIVAL_DATE

4. ARRIVAL_MODE

5. ARRIVAL_TIME

6. ASSAULT_LOCATION_DESCRIPTION

7. CHIEF_COMPLAINT_IS_INJURY_RELATED

8. ED_COUNTY_CODE

9. ED_DISTRICT_CODE

10. ETHNIC_CATEGORY

11. ETHNIC_CATEGORY_Description

12. INJURY_ACTIVITY_STATUS

13. INJURY_ACTIVITY_TYPE

14. INJURY_ACTIVITY_TYPE_Description

15. INJURY_DATE

16. INJURY_INTENT (+description)

17. INJURY_MECHANISM (+description)

18. INJURY_TIME

19. LSOA_2011

20. PATIENT_POSTCODE_DISTRICT

21. PLACE_OF_INJURY (+description)

22. SEX

Health Survey for England (HSE)

PURPOSE: (DHSC Healthy lifestyles work programme) The HSE is a longstanding annual survey of the health and lifestyles of a sample of around 8,000 adults and 2,000 children. The HSE is carried out by NatCen Social Research on behalf of NHS Digital. The HSE data, which has been anonymised, has been published for several years on the UK Data Archive, although additional restrictions have recently been applied to this by NHS Digital to further reduce the risk of any of sample participants being identified. PHE commissioned a boost to the number of children included in the 2015 HSE and requires access to more detailed data on children in households than that ordinarily published by NHS Digital via the UK Data Archive.

Separately, PHE also requires access to a more detailed combined set of HSE data bringing together the responses to the questions on adult gambling behaviours from the 2012, 2015, 2016 and 2018 surveys than is ordinarily published by NHS Digital via the UK Data Archive.

Hospital Episode Statistics (HES)

PURPOSE 1: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of a wide range of conditions such as heart disease and stroke, mental health and respiratory disease.

PURPOSE 2: (UKHSA Health protection work programme) The HES data contains information on the numbers of maternity admissions to NHS hospitals for Covid-19 and related conditions. The HES data, which has been anonymised and provided by NHS Digital to UKHSA, is used to validate the numbers of maternity admissions identified through the processing of the more-timely SUS APC data set. Comparison of the numbers of admissions identified through separate analyses of HES and SUS APC has identified a c.10% difference. A list of the SUSSPELLIDs identified from HES is compared to the list derived from the separate analysis of SUS APC to clarify whether the difference is due to the more timely but less complete nature of SUS APC, or to methodological differences between the two sets of analyses, or to some combination of these two factors. The results of this comparison are used to refine the methodology developed to identify maternal admissions from SUS APC, which is used to support the near-real-time modelling and planning for Covid-19 and related hospital pressure and risk management by UKHSA. To note, the analysis of the SUS APC data is undertaken by a team from the former Joint Biosecurity Centre under the DSA separately agreed by JBC and NHS Digital (DARS-NIC-406871-Q9G2Q). Only the SUSSPELLIDs are shared by the (former) PHE (now UKHSA) team carrying out the analysis of HES with the (former) JBC team (now UKHSA) carrying out the analysis of SUS.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (DHSC Mental health work programme) The IAPT data set provides information on access to and outcomes for adults being treated by psychological therapy services across England. It includes patient demographic information and information on referrals to psychological therapy services, mental health assessments and the treatment provided to patients. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence and prevalence of mental health problems such as anxiety disorders and depression. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health, including delivering the NHS Five Year Forward View for Mental Health.

Maternity Services Data Set

PURPOSE: (DHSC Healthy Lifecourse work programme) The MSDS provides information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The pseudonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in maternal health, the use of obstetric and antenatal services, and child health outcomes. The results of these analyses are used to produce a range of health intelligence outputs to support the commissioning and monitoring of outcomes for maternity services. The data is also used to monitor progress in achieving the Secretary of State’s ambition to halve the number of stillbirths, neonatal and maternal deaths and brain injuries by 2030, and to monitor progress in implementing national initiatives such as the Maternity Transformation Programme. The data provided by NHS Digital includes a pseudoID to enable the pseudonymised linkage by PHE of the MSDS records of mothers to the corresponding records of their infants and children from the Community Services Data Set (CSDS). This linked data is used by PHE to analyse the impacts of maternal health and care in pregnancy with the health and developmental outcomes for their children.

Mental Health Services Data Set (MHSDS)

PURPOSE: (DHSC Mental health work programme) The MHSDS contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals and treatment centres with mental health problems in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of mental health problems such as dementia and depression and anxiety.

National Child Measurement Programme (NCMP)

PURPOSE: (DHSC Child health work programme) The NCMP provides information on the height and weight and associated demographic characteristics of all children in Reception (aged 4-5 years) and Year 6 (aged 10-11 years) in schools in England. PHE is the sponsor on behalf of the Secretary of State of the national collection of NCMP data by NHS Digital from all Local Authorities. The NCMP data provided by NHS Digital to PHE includes two components: an anonymised single year data set recording the NCMP results for each submission year and an anonymised data set that links children’s Reception and Year 6 measurements.

National Diabetes Audit

PURPOSE: (DHSC Cardiovascular disease work programme) The NDA provides information on the treatment of people with diabetes across England. The audit collects patient demographic information from specialist diabetes services and GP Practices, together with information on the provision of annual care checks, blood glucose levels, achievement of treatment targets, and the health outcomes of people with diabetes. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence, prevalence and treatment of diabetes. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including supporting and evaluating the NHS Diabetes Prevention Programme.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (UKHSA Syndromic surveillance programme) This data set provides information on calls made to the NHS 111 service by symptomatic patients across England. It includes patient demographic information and information on the symptoms, their severity and the treatment recommended to callers to the service. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (NHS Digital National Cancer Register) The CWT data linked to cancer registration records is used by PHE to analyse trends in the number of urgent referrals for suspected cancer and resulting diagnoses to understand the effectiveness of this referral route for improving patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the Cancer Services tool at https://fingertips.phe.org.uk/profile/cancerservices.

The findings derived from the linked CWT and cancer registration data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the NHS England National Cancer Strategy Implementation Plan (https://www.england.nhs.uk/cancer/strategy).

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (NHS Digital National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

Hospital Episodes Statistics (HES)

PURPOSE 1: (NHS Digital National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 2: (UKHSA Health protection work programme and DHSC COVID-19 work programme) The findings derived from the linked HES data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections (including COVID-19), the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis

and the vaccination information at

https://www.gov.uk/government/collections/vaccine-uptake and the COVID-19 dashboards at https://coronavirus.data.gov.uk.

PURPOSE 3: (NHS Digital National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network

(http://www.eurocat-network.eu/).

The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

PURPOSE 4: (DHSC Drug and Alcohol work programme) The findings derived from the linked HES data primarily are used to undertake research into the effectiveness of the IPS programme in supporting drug and alcohol treatment service users into employment, and in reducing the health harms and criminal activity associated with substance misuse. The results of the analyses of the linked data will be published in a report to the DHSC and Local Authorities and papers submitted to academic journals to inform and guide the future planning and commissioning of effective local drug and alcohol treatment services across England.

PURPOSE 5: (UKHSA Health protection work programme) The outcomes of analyses based on the enrichment of UKHSA communicable disease data sets with ethnic group information derived from linkage to HES are used to inform public health action to reduce these threats to public health. For example, the results are used to direct front-line prevention and control measures, are published in the form of aggregate statistics and tables in communicable disease surveillance reports, and are used to inform the development of national health protection policy.

Linked HES & Civil Registry Deaths

PURPOSE1: (DHSC End of life care work programme) The results of the analyses undertaken by PHE are published in the End of Life Care Profiles at

https://fingertips.phe.org.uk/.

These profiles are provided by Local Authority and Clinical Commissioning Group and are used to support local health and social care commissioning, for example by providing statistics on the place of death and nursing and care home bed rates.

PURPOSE 2: (DHSC NHS Health Check) The result of these analyses undertaken by PHE will determine the efficacy of the NHS Health Check Programme and important medical outcomes including mortality and medical events via a suite of analytical products such as reports, interactive dashboards and peer-reviewed publications for providers of the NHS Health Check, commissioners of the NHS Health Check and other stakeholders (for instance, NHS England, patients and the public, the primary care community, government, policy makers, charities, UK and international researchers) who wish to better understand the status and outcomes related to the NHS Health Check programme.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of different public health profiles at https://fingertips.phe.org.uk/. PHE also undertakes ad hoc analyses of PCMD to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs). These results of these analyses are provided directly to Local Authorities in the form of aggregate statistics and tables.

Secondary Use Service (SUS)

PURPOSE 1: (NHS Digital National Cancer Register) The linked SUS and National Cancer Register data is used by PHE for the specific purpose of producing a set of monthly-updated cancer outcomes metrics on the performance of the NHS in diagnosing and treating cancer patients as soon as possible, such as cancer stage at diagnosis and the percentage of cases diagnosed as an emergency. These metrics, as well as other statistics based on the analysis of data from the cancer register, are published at http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic_specific_work/cancer_outcome_metrics.

Community Services Data Set

PURPOSE: (DHSC Healthy Lifecourse work programme) The results of the analyses of CSDS data undertaken by PHE are published in a range of indicators, analytical tools and reports, including the child and maternal health profiles at

https://fingertips.phe.org.uk/ and https://www.gov.uk/government/collections/child-and-maternal-health-statistics.

This information is used by PHE to advise on the development and monitor the effectiveness of national child and maternal health policies and initiatives, such as investment in breastfeeding services and child and adult weight management programmes. PHE also undertakes ad hoc analyses of CSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Emergency Care Data Set

PURPOSE 1: (DHSC Injury prevention and mental health work programmes) The results of the analyses of ECDS data are published in a range of indicators, analytical tools and reports, including the crisis care profiles at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/crisis-care.

The findings derived from ECDS data are further used by PHE to monitor the effectiveness of national policies aimed at preventing injuries and self-harm, such as the National Crisis Care Concordat. This information is also used by local multi-agency partnerships to support the commissioning of violence and self-harm prevention services at a local level.

PURPOSE 2: (UKHSA Syndromic surveillance programme) The results of the analyses of ECDS data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance report published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on EDCS data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including Emergency Care Data Set data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

PURPOSE 3: (NHS Digital National Cancer Register) The results of the analyses under-taken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 4: (UKHSA Health protection work programme) The findings derived from the linked ECDS data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections, the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis and the vaccination information at https://www.gov.uk/government/collections/vaccine-uptake.

PURPOSE 5: (NHS Digital National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network

(http://www.eurocat-network.eu/).

The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

PURPOSE 6: (DHSC Drug and Alcohol work programme) The results of the locational analyses of the new ECDS Assault_Location_Description field data undertaken by PHE are used in the following ways: to make recommendations to NHS England on whether locational information on assaults should be recorded at source in EDs and, if so, the methodology for this; and provide anonymised aggregate reports on assault locations, including ‘hotspots’, to the London Violence Reduction Unit, which is based on the Greater London Authority, to assess the utility of this information for supporting the commissioning and monitoring the effectiveness of local violence reduction strategies and initiatives.

Health Survey for England

PURPOSE: (DHSC Healthy lifestyles work programme) The data which has been anonymised and provided to PHE is used to estimate excess calorie intakes for children and teenagers. The results of these analyses are providing the evidence for a national calorie reduction campaign led by PHE.

Separately, the anonymised data set on adult gambling behaviours will be used by PHE to analyse gambling prevalence and harms as part of an evidence review commissioned by the Department of Health & Social Care. (The PHE remit letter for 2019/20 from the Parliamentary Under Secretary of State for Public Health and Primary Care specifically states that “During the reporting year PHE will complete and publish evidence reviews on the public health impacts associated with prescription drug dependence and gambling”.)

Hospital Episode Statistics (HES)

PURPOSE 1: (DHSC Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Public Health Outcomes Framework at http://www.phoutcomes.info/. The findings derived from HES data are used to inform the development and monitor the effectiveness of national policies and initiatives aimed at protecting and improving public health and reducing health inequalities. The HES data is also analysed by PHE to produce statistics to help Local Authorities fulfil their statutory duty to improve the health of their local population, for example through the production of joint strategic needs assessments and local health and wellbeing strategies.

PURPOSE 2: (UKHSA Health protection work programme) The findings of the comparison of the numbers of maternity admissions for Covid-19 and related conditions identified through the separate analyses of HES and SUS APC are used to refine the methodology developed by UKHSA to identify maternity admissions from SUS APC. This refined methodology is used to ensure that the numbers of maternity admissions to hospital for Covid-19 and related conditions is sufficiently accurate to inform the near-real-time modelling and planning for Covid-19 and related hospital pressure and risk management by UKHSA.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (DHSC Mental health work programme) The results of the analyses of IAPT data are published in a range of indicators, analytical tools and reports, including the common mental health disorders profiling tool at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from IAPT data is also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with mental health problems, particularly the NHS Five Year Forward View for Mental Health. This information is also used by Local Authorities to support the local commissioning of mental health services.

Maternity Services Data Set

PURPOSE: (DHSC Healthy Lifecourse work programme) The results of the analyses of the MSDS data are published by PHE in a range of indicators, analytical tools and reports, including the child health profiles at

https://fingertips.phe.org.uk/profile/child-health-profiles.

This information is used by PHE to advise on the development and monitor the effectiveness of national child and maternal health policies and initiatives, such as investment in breastfeeding services and child and adult weight management programmes. PHE also undertakes ad hoc analyses of MSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Mental Health Services Data Set (MHSDS)

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Common Mental Health Disorders Profiling Tool at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from MHSDS are also used by PHE to develop and assess the effectiveness of national policies aimed at improving the lives of people with mental health problems, and are used by Local Authorities to support the commissioning and provision of mental health services at a local level.

National Child Measurement Programme (NCMP)

PURPOSE: (DHSC Healthy Lifecourse work programme) The data which has been anonymised and provided to PHE is used to analyse variations and trends in the percentages of children who are underweight, normal weight, overweight and obese. The data is also used to monitor how the proportions of children in these different categories changes as they progress from Reception to Year 6. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the local authority profiles at http://fingertips.phe.org.uk/profile/national-child-measurement-programme.

PHE further uses the data to provide statistics to schools on the percentage of children who are an unhealthy weight. The NCMP findings are also used by PHE to advise on and support the development of national policies to increase the proportion of children who are normal weight, and are used by Local Authorities to commission and provide services that support families to make healthy lifestyle changes.

National Diabetes Audit

PURPOSE: (DHSC Cardiovascular disease work programme) The results of the analyses of NDA data are published in a range of indicators, analytical tools and reports, including the diabetes profiles at

https://fingertips.phe.org.uk/profile/diabetes-ft.

The findings derived from NDA data are also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with diabetes, particularly supporting and evaluating the NHS Diabetes Prevention Programme. This information is also used by Local Authorities to support the local commissioning of cardiovascular prevention and treatment services.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (UKHSA Syndromic surveillance programme) The results of the analyses of NHS 111 data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance reports published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on NHS 111 data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including NHS 111 data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are being used to develop further indicators of care-giving across demographic groups and geographic areas for inclusion in the Dementia Profile published at https://fingertips.phe.org.uk/profile-group/mental-health.

The results of these analyses are being used to understand more about the care provided to people with dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (DHSC Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Dementia Profile and the Common Mental Health Disorders profile at https://fingertips.phe.org.uk/profile-group/mental-health.

The findings of these analyses are also used to monitor progress in improving the diagnosis and treatment of dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: UKHSA Health protection work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the local authority Sexual and Reproductive Health Profiles at https://fingertips.phe.org.uk/profile/sexualhealth.

The SRHAD findings are used by PHE to develop and monitor national policies for Sexual Health and HIV, and by Local Authorities to provide SRH services to improve sexual and reproductive health across England.

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COVID-19:

(PURPOSE: UKHSA Health protection work programme and DHSC COVID-19 work programme) Covid-19 presents a significant threat to the population in terms of increased morbidity and mortality, particularly among vulnerable groups such as those with pre-existing disease. PHE epidemiological surveillance will be undertaken to monitor and describe the circulation of Covid-19 in the population, and to measure its impact on public health and the healthcare system.

PHE surveillance is required to understand how well Covid-19 response programmes are working and to inform future planning using epidemiological and modelling methods. The results of the analyses of the SUS+ APC and ECDS data linked to the SGSS, CHESS and mortality data are used by PHE to produce aggregate statistical reports that inform the national Covid-19 action plan, the health protection guidance provided to healthcare professionals and the public, and to support Covid-19-related capacity and capability planning in the NHS. Data will be received in daily extract files via MESH and linked and analysed by PHE analysts.

The statistical outputs based on the linked data are published by PHE as aggregate counts and rates (for example, at

https://www.gov.uk/government/organisations/public-health-england/about/statistics),

with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

The guidance for healthcare professionals and the public produced by PHE and other national bodies involved in the Covid-19 response is published at https://www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance.

Shielded Patient List

PURPOSE: (NHS Digital National Congenital Anomaly & Rare Diseases Register) The findings derived from the linked SPL and NCARDRS Register data are used to measure differences in health outcomes for autoimmune rheumatic diseases patients who are on the SPL and those who are not. The findings will be used to inform the development of the national policy response and guidance on shielding to protect autoimmune rheumatic disease patients from adverse outcomes associated with COVID-19 infection and the wider pandemic response. The findings will also be submitted for publication in peer-reviewed medical journals. The statistical outputs based on the linked data are published as aggregate counts and rates, with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

Cumbrian Birth Cohort (CBC)

PURPOSE: (NHS Digital National Cancer Register) The findings derived from the linked CBC and National Cancer Register data are used to analyse and monitor cancer incidence and prevalence rates among individuals at risk of radiation exposure as a result of the 1957 Windscale/Sellafield fire. It will also be used to monitor the treatment and outcomes for those diagnosed with cancer among this cohort. The findings will be used to help measure the risk of ionising radiation exposure for cancer and submitted to the Department of Health & Social Care Committee on Medical Aspects of Radiation in the Environment (COMARE) to help inform the national and international policy response to potential future environmental exposure events. The statistical outputs based on the linked data are published as aggregate counts and rates, with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

The PHE remit letter, dated March 2018, sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2018 to March 2019: https://www.gov.uk/government/publications/phe-remit-letter-2018-to-2019

Likewise, the PHE remit letter dated March 2019 sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2019 to March 2020: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/789194/phe-priorities-in-health-and-care-2019-2020-letter.pdf

The PHE remit letter dated April 2020 sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2020 to March 2021, emphasising the focus on COVID-19: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/882570/PHE_Remit_Letter_from_Jo_Churchill_to_Duncan_Selbie.pdf

Public Health England (PHE) is the national agency charged with protecting and improving the nation’s health. It is an executive agency of the Department of Health and Social Care (DHSC) and acts on behalf of the Secretary of State to discharge his statutory duties to protect and improve public health in England, and reduce health inequalities, as set out in Sections 2A and 2B of the NHS Act 2006, as inserted by the Health and Social Care Act 2012. These functions and its annual priorities are set out in the remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care (https://www.gov.uk/government/publications/phe-remit-letter-2017-to-2018).

PHE is a direct provider of health protection and health improvement services to patients and the public in England. The successful fulfilment of its remit depends on its ability to process data on the health status of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data it uses it collects directly, but PHE also depends on appropriate and timely access to other sources of health and care data, such as the health status and healthcare provider activity data collected at a national level by NHS Digital.

This Data Sharing Agreement (DSA) supports the statutory remit and core functions of PHE by setting out the justifications and legal basis for the sharing of specified data sets by NHS Digital with PHE.

The majority of the datasets shared between the two organisations are detailed in Section 3 of this DSA. Those additional datasets shared which are not contained in Section 3 are detailed below:

NHS 111 Repeat Caller Service Data Set – daily extract of pseudo/anonymised data (from 2013/14 M05 to latest available)

Personal Social Services Survey of Adult Carers in England (PSS- SACE) - biannual extract of pseudo/anonymised data (from 2009/10 to latest available)

Recorded Dementia Diagnoses (RDD) Data Set - annual extract of pseudo/anonymised data (from 2016/17 to latest available)

Secondary Uses Service (SUS+) - monthly extract of data provided by SUS team within NHS Digital.

Note that Daily SUS and Daily Emergency Care Dataset (ECDS) are provided by the NHS Digital’s SUS team, not by the HES Data Production team.

To note, the legal basis for PHE to process each of the datasets is General Data Protection Regulation (GDPR) Article 6(1)e (performance of a task carried out in the public interest or in the exercise of official authority vested in the controller; ) and 9(2)h (the management of the Health and Social Care system and services) and 9(2)i (public health interest). NHS Digital's legal basis to disseminate is Health & Social Care Act 2012- 261(1) other.

Please note, specific information regarding the purposes for each dissemination from NHS Digital to PHE is detailed later in this section.

For clarity, this DSA does not cover transfers of data to support the direct provision of treatment and care services to patients, such as the use by PHE of the National Health Application and Infrastructure Services (NHAIS) managed by NHS Digital to identify patients eligible to be called for screening for bowel, breast and cervical cancer as part of the NHS Cancer Screening Programmes. It also excludes transfers of data from NHS Digital to PHE for research purposes that have been approved through the Data Access Request Service (DARS) and for which individual data sharing agreements are in place.

PHE commits to ensuring that all its processing of data transferred from NHS Digital complies with: the legal framework for data protection and confidentiality; the updated Caldicott principles; other associated guidance, and the information governance assurance framework for health and care organisations codified in the Data Security and Protection Toolkit.

This single DSA differs from the standard NHS Digital data release process; there are a number of reasons for this different arrangement:

- This DSA builds on the letter from the Department of Health and Social Care (DHSC) sponsors of PHE and NHS Digital dated 26th January 2015 confirming the Department’s support for the approach set out herein to the exchange of data between the two organisations in order to support the fulfilment of their respective remits and functions. It also builds on previous Memorandum of Understanding on Data Exchange agreements between PHE and NHS Digital covering the years 2015/16, 2016/17, 2017/18 and the first half of 2018/19.

- This DSA recognises the remit and functions of NHS Digital as set out in the Health & Social Care Act 2012 and the Care Act 2014, and of PHE as set out in its annual remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care. It also recognises the specific legal gateways provided to PHE under Section 60 of the Health & Social Care Act 2001, as re-enacted by Section 251 of the NHS Act 2006 and the associated Health Service (Control of Patient Information) Regulations 2002, to lawfully process confidential patient information. PHE has also been granted specific exemptions from national data opt outs by the Secretary of State in recognition of its national role in protecting and improving public health.

With specific regard to NHS Digital data which has been pseudonymised prior to transfer to PHE, this data is released using NHS Digital powers provided under the Health & Social Care Act 2012. The controls required to ensure the risks of patients being re-identified are minimised and are set out within the overarching NHS Digital Data Sharing Framework Contract signed by PHE.

If PHE require a new dataset from NHS Digital or if the data provided from NHS Digital to PHE is used for purposes that are different from those for which the data was provided in the first instance, PHE will seek permission, via an amendment to this DSA, from NHS Digital before using the data.

Specific information regarding the purposes for processing for each dataset disseminated by NHS Digital to PHE is detailed below:

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (National Cancer Register) The CWT contains information on patients urgently referred for suspected cancer or to be treated for cancer in NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration-and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (including referral waiting times), treatment (including treatment waiting times) and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. The CWT data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand the impact of patient routes to diagnosis and treatment pathways on patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk.

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (National Cancer Register) The DIDS data contains information on the diagnostic imaging tests, such as x-rays and MRI scans, carried out on cancer patients treated in NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration- and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (such as DIDS), treatment and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. This linked data is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

Hospital Episodes Statistics (HES)

PURPOSE 1: (PHE National Cancer Register) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these patients. The HES data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 2: (PHE Health protection work programme) The patient identifiable HES data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. HES is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 3: (PHE National Congenital Anomaly & Rare Diseases Register) The patient identifiable HES data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register

(https://www.gov.uk/guidance/the-national-congenital- anomaly-and-rare-disease-registration-service-ncardrs). PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these individuals.

Linked HES & Civil Registry Deaths

PURPOSE 1: (PHE End of life care work programme) The linked HES/Mortality data contains hospital admissions data and mortality records but no information that could be used to directly identify individual patients is provided to PHE. The data is used by PHE to undertake a range of analyses of the health status and care received by individuals at the end of their lives. It is also used to analyse the place of death and determine whether the care provided beforehand was in a hospital, a residential or nursing establishment, or at home.

PURPOSE 2: (NHS Health Check) The linked pseudonymised HES APC and Civil Registrations (Deaths) – Summary Care Record data set for the period 01/04/2009 - 31/03/2018 will be used to fulfil the third stage of PHE’s analysis strategy to estimate the impact of NHS Health Check attendance on health outcomes. The Primary Care data set ‘NHS Health Checks’ was collected by NHS Digital under Direction on behalf of PHE, and initial analysis was conducted under DARS-NIC-201243-R7L2M.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The PCMD data provided by NHS Digital to PHE details the cause of death but includes no information that could be used to directly identify individual patients. The data is used by PHE to produce a range of statistics on cause-specific death for different demographic groups and geographic areas. These analyses are undertaken on a routine basis by PHE to support its long-term surveillance of non-communicable diseases and to support the work of local public health teams in the discharge of the statutory health improvement duty of Local Authorities.

Secondary Use Service (SUS)

PURPOSE 1: (PHE National Cancer Register) SUS data is essentially an earlier, less ‘clean’ version of the HES data described above (for example, not all duplicate records have been removed) and contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. Data is only provided by NHS Digital for patients with a cancer-related ICD-10 diagnosis code.

Community Services Data Set

PURPOSE: (PHE Healthy Lifecourse work programme) The CSDS provides information on the provision of community-based health and care services to infants, children, young people and adults. It collects data on: patient demographics, such as age, sex, address and GP registration; referrals to community, mental health and social care services; infant and childhood health screening tests and immunisations; special educational needs, child protection and safeguarding assessments; and other information about community-based services. The pseudonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in the proportions of infants and children reaching developmental milestones, and to analyse the links between child health and educational attainment. It is also used to monitor the use of community-based health and care services, and to produce a range of intelligence outputs to support the commissioning and monitoring of outcomes for community-based services. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities. The data provided by NHS Digital includes a pseudoID to enable the pseudonymised linkage by PHE of the CSDS records for infants and children to the corresponding record of their mothers from the Maternity Services Data Set (MSDS).

Emergency Care Data Set

PURPOSE 1: (PHE Injury prevention and mental health work programmes) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the monitoring of the numbers and trends in patients attending hospital with injuries, particularly violence-related injuries, and because to self-harm. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including delivering the NHS Five Year Forward View for Mental Health and the National Crisis Care Concordat.

PURPOSE 2: (PHE Syndromic surveillance programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its wider duty to protect the nation’s health by providing a national integrated syndromic surveillance system.

PURPOSE 3: (PHE National Cancer Register) The identifiable patient ECDS data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as ECDS) and outcomes of these patients. The ECDS data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 4: (PHE Health protection work programme) The patient identifiable ECDS data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. ECDS is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 5: (PHE National Congenital Anomaly & Rare Diseases Register) The patient identifiable ECDS data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register. PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as ECDS) and outcomes of these individuals. The ECDS data linked to CARD registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different rare diseases, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 6: (PHE Drug and Alcohol work programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. One limitation of the ECDS is that it does not record detailed information on the location at which physical assaults leading to an ED attendance occur which is needed to support local violence reduction strategies. The Data Coordination Board has approved the inclusion of a new Assault_Location_Description field in ECDS to enable this free-text information to be recorded by a sample of EDs engaged in the pilot relating to this new field (DCB0092-2062 Amd 19/2020, ISN change specification publication date 10-Sep-2020). This pilot is being led by PHE, which will process the anonymised data provided by NHS Digital to assess the utility of the new ECDS field for supporting targeted public health interventions, and make recommendations to NHS England on whether to require the provision of this information in ECDS by all EDs. The following subset of data items provided from the pre-existing pseudonymised ECDS provided to PHE by NHS Digital will be processed by staff from the PHE Drug and Alcohol work programme for the purpose of this pilot:

1. AGE_AT_ARRIVAL

2. AGE_RANGE

3. ARRIVAL_DATE

4. ARRIVAL_MODE

5. ARRIVAL_TIME

6. ASSAULT_LOCATION_DESCRIPTION

7. CHIEF_COMPLAINT_IS_INJURY_RELATED

8. ED_COUNTY_CODE

9. ED_DISTRICT_CODE

10. ETHNIC_CATEGORY

11. ETHNIC_CATEGORY_Description

12. INJURY_ACTIVITY_STATUS

13. INJURY_ACTIVITY_TYPE

14. INJURY_ACTIVITY_TYPE_Description

15. INJURY_DATE

16. INJURY_INTENT (+description)

17. INJURY_MECHANISM (+description)

18. INJURY_TIME

19. LSOA_2011

20. PATIENT_POSTCODE_DISTRICT

21. PLACE_OF_INJURY (+description)

22. SEX

Health Survey for England (HSE)

PURPOSE: (PHE Healthy lifestyles work programme) The HSE is a longstanding annual survey of the health and lifestyles of a sample of around 8,000 adults and 2,000 children. The HSE is carried out by NatCen Social Research on behalf of NHS Digital. The HSE data, which has been anonymised, has been published for several years on the UK Data Archive, although additional restrictions have recently been applied to this by NHS Digital to further reduce the risk of any of sample participants being identified. PHE commissioned a boost to the number of children included in the 2015 HSE and requires access to more detailed data on children in households than that ordinarily published by NHS Digital via the UK Data Archive.

Separately, PHE also requires access to a more detailed combined set of HSE data bringing together the responses to the questions on adult gambling behaviours from the 2012, 2015, 2016 and 2018 surveys than is ordinarily published by NHS Digital via the UK Data Archive.

Hospital Episode Statistics (HES)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of a wide range of conditions such as heart disease and stroke, mental health and respiratory disease.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (PHE Mental health work programme) The IAPT data set provides information on access to and outcomes for adults being treated by psychological therapy services across England. It includes patient demographic information and information on referrals to psychological therapy services, mental health assessments and the treatment provided to patients. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence and prevalence of mental health problems such as anxiety disorders and depression. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health, including delivering the NHS Five Year Forward View for Mental Health.

Maternity Services Data Set

PURPOSE: (PHE Healthy Lifecourse work programme) The MSDS provides information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The pseudonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in maternal health, the use of obstetric and antenatal services, and child health outcomes. The results of these analyses are used to produce a range of health intelligence outputs to support the commissioning and monitoring of outcomes for maternity services. The data is also used to monitor progress in achieving the Secretary of State’s ambition to halve the number of stillbirths, neonatal and maternal deaths and brain injuries by 2030, and to monitor progress in implementing national initiatives such as the Maternity Transformation Programme. The data provided by NHS Digital includes a pseudoID to enable the pseudonymised linkage by PHE of the MSDS records of mothers to the corresponding records of their infants and children from the Community Services Data Set (CSDS). This linked data is used by PHE to analyse the impacts of maternal health and care in pregnancy with the health and developmental outcomes for their children.

Mental Health Services Data Set (MHSDS)

PURPOSE: (PHE Mental health work programme) The MHSDS contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals and treatment centres with mental health problems in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of mental health problems such as dementia and depression and anxiety.

National Child Measurement Programme (NCMP)

PURPOSE: (PHE Child health work programme) The NCMP provides information on the height and weight and associated demographic characteristics of all children in Reception (aged 4-5 years) and Year 6 (aged 10-11 years) in schools in England. PHE is the sponsor on behalf of the Secretary of State of the national collection of NCMP data by NHS Digital from all Local Authorities. The NCMP data provided by NHS Digital to PHE includes two components: an anonymised single year data set recording the NCMP results for each submission year and an anonymised data set that links children’s Reception and Year 6 measurements.

National Diabetes Audit

PURPOSE: (PHE Cardiovascular disease work programme) The NDA provides information on the treatment of people with diabetes across England. The audit collects patient demographic information from specialist diabetes services and GP Practices, together with information on the provision of annual care checks, blood glucose levels, achievement of treatment targets, and the health outcomes of people with diabetes. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence, prevalence and treatment of diabetes. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including supporting and evaluating the NHS Diabetes Prevention Programme.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (PHE Syndromic surveillance programme) This data set provides information on calls made to the NHS 111 service by symptomatic patients across England. It includes patient demographic information and information on the symptoms, their severity and the treatment recommended to callers to the service. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its remit to protect the nation’s health by providing a national integrated syndromic surveillance system.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (PHE Mental health work programme) The PSS-SACE provides information on the experiences of persons aged 18 or over who care for another adult, such as the number of hours of care they provide, the support they receive, and their own levels of mental health and wellbeing. No patient identifiable data is collected by NHS Digital in the PSS-SACE. The data, which has been anonymised and provided by NHS Digital to PHE is used to understand more about the types of care being provided, the experiences of carers, their support and training requirements, and the provision of respite opportunities.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (PHE Mental health work programme) The RDD provides information on the number of patients aged 65 and over with a recorded dementia diagnosis. The data is broken down by gender and five year age group for each GP Practice in England. No patient identifiable data is collected by NHS Digital in the RDD Data Set. The data, which has been anonymised and provided by NHS Digital to PHE is used to analyse variations in the numbers and percentages of older people with dementia in different gender and age groups by GP Practice and other geographic areas.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: (PHE Health protection work programme) The SRHAD collects information on the contraception, sexually transmitted infections (STI) and reproductive health advice and care provided to patients attending sexual and reproductive health (SRH) services in England. PHE is the sponsor on behalf of the Secretary of State for the national collection of SRHAD data by NHS Digital from all SRH services. The data, which has been anonymised and provided by NHS Digital to PHE is used to monitor the implementation of key national sexual health policy objectives such as: increasing access to all methods of contraception, including long acting reversible contraception and emergency contraception, and reducing inequalities in access to services; reducing teenage conceptions; and reducing unintended pregnancies.

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COVID-19: Daily SUS+ APC and ECDS

PURPOSE: To enable PHE to process:

a) identifiable Secondary Uses Service (SUS+) Admitted Patient Care (APC) data for ALL patient episodes (open and completed) in hospitals in England (this is a change to the existing agreement D01 IG00232, which currently only covers completed episodes for patients with certain lower respiratory tract infections)

and

b) identifiable Emergency Care Data Set (ECDS) data for ALL emergency care episodes in England.

Daily extracts of identifiable SUS+ APC and ECDS data will be provided to Public Health England (PHE) for the purpose of monitoring patient episodes in hospitals associated with Covid-19.

The SUS+ APC and ECDS data sets contain information on both current and previous treatment episodes for patients attending or admitted to hospitals in England. The SUS+ APC data and ECDS is linked by PHE to the diagnostic and treatment information it holds in its Second Generation Surveillance System (SGSS) and Covid-19 Hospitalisation in England Surveillance System (CHESS) data sets for patients with a Covid-19 diagnosis. It is also linked to the civil registration deaths records held by PHE. (See section 5b below for an explanation of these PHE data sets.)

Access to all SUS+ APC and ECDS records is required by PHE so that it can rapidly and fully identify all current and recent previous treatment episodes for patients with a confirmed and suspected Covid-19 diagnosis.

This linked identifiable data set is analysed by PHE to identify the epidemiological characteristics of patients with Covid-19, including their demographic characteristics, geographic location, date of infection and reasons for any previous hospital episodes. The data is also used by PHE to monitor changes over time in these patients’ epidemiological characteristics, as well as to monitor the length of time they stay in hospital, whether they are treated for other health problems related to their Covid-19 diagnosis and treatment, and to monitor their clinical outcomes from Covid-19 and any other health problems such as healthcare associated infections.

PHE is the national agency charged with protecting and improving the nation’s health. It is an executive agency of the Department of Health and Social Care (DHSC) and acts on behalf of the Secretary of State to discharge his statutory duties to protect and improve publi

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (National Cancer Register) The CWT data linked to cancer registration records is used by PHE to analyse trends in the number of urgent referrals for suspected cancer and resulting diagnoses to understand the effectiveness of this referral route for improving patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the Cancer Services tool at https://fingertips.phe.org.uk/profile/cancerservices.

The findings derived from the linked CWT and cancer registration data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the NHS England National Cancer Strategy Implementation Plan (https://www.england.nhs.uk/cancer/strategy).

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (PHE National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

Hospital Episodes Statistics (HES)

PURPOSE 1: (PHE National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 2: (PHE Health protection work programme) The findings derived from the linked HES data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections, the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis

and the vaccination information at

https://www.gov.uk/government/collections/vaccine-uptake.

PURPOSE 3: (PHE National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network

(http://www.eurocat-network.eu/).

The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

Linked HES & Civil Registry Deaths

PURPOSE1: (PHE End of life care work programme) The results of the analyses undertaken by PHE are published in the End of Life Care Profiles at

https://fingertips.phe.org.uk/.

These profiles are provided by Local Authority and Clinical Commissioning Group and are used to support local health and social care commissioning, for example by providing statistics on the place of death and nursing and care home bed rates.

PURPOSE 2: (NHS Health Check) The result of these analyses undertaken by PHE will determine the efficacy of the NHS Health Check Programme and important medical outcomes including mortality and medical events via a suite of analytical products such as reports, interactive dashboards and peer-reviewed publications for providers of the NHS Health Check, commissioners of the NHS Health Check and other stakeholders (for instance, NHS England, patients and the public, the primary care community, government, policy makers, charities, UK and international researchers) who wish to better understand the status and outcomes related to the NHS Health Check programme.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of different public health profiles at https://fingertips.phe.org.uk/. PHE also undertakes ad hoc analyses of PCMD to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs). These results of these analyses are provided directly to Local Authorities in the form of aggregate statistics and tables.

Secondary Use Service (SUS)

PURPOSE 1: (PHE National Cancer Register) The linked SUS and National Cancer Register data is used by PHE for the specific purpose of producing a set of monthly-updated cancer outcomes metrics on the performance of the NHS in diagnosing and treating cancer patients as soon as possible, such as cancer stage at diagnosis and the percentage of cases diagnosed as an emergency. These metrics, as well as other statistics based on the analysis of data from the cancer register, are published at http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic_specific_work/cancer_outcome_metrics.

Community Services Data Set

PURPOSE: (PHE Healthy Lifecourse work programme) The results of the analyses of CSDS data undertaken by PHE are published in a range of indicators, analytical tools and reports, including the child and maternal health profiles at

https://fingertips.phe.org.uk/ and https://www.gov.uk/government/collections/child-and-maternal-health-statistics.

This information is used by PHE to advise on the development and monitor the effectiveness of national child and maternal health policies and initiatives, such as investment in breastfeeding services and child and adult weight management programmes. PHE also undertakes ad hoc analyses of CSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Emergency Care Data Set

PURPOSE 1: (PHE Injury prevention and mental health work programmes) The results of the analyses of ECDS data are published in a range of indicators, analytical tools and reports, including the crisis care profiles at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/crisis-care.

The findings derived from ECDS data are further used by PHE to monitor the effectiveness of national policies aimed at preventing injuries and self-harm, such as the National Crisis Care Concordat. This information is also used by local multi-agency partnerships to support the commissioning of violence and self-harm prevention services at a local level.

PURPOSE 2: (PHE Syndromic surveillance programme) The results of the analyses of ECDS data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance report published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on EDCS data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including Emergency Care Data Set data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

PURPOSE 3: (PHE National Cancer Register) The results of the analyses under-taken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 4: (PHE Health protection work programme) The findings derived from the linked ECDS data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections, the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis and the vaccination information at https://www.gov.uk/government/collections/vaccine-uptake.

PURPOSE 5: (PHE National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network

(http://www.eurocat-network.eu/).

The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

PURPOSE 6: (PHE Drug and Alcohol work programme) The results of the locational analyses of the new ECDS Assault_Location_Description field data undertaken by PHE are used in the following ways: to make recommendations to NHS England on whether locational information on assaults should be recorded at source in EDs and, if so, the methodology for this; and provide anonymised aggregate reports on assault locations, including ‘hotspots’, to the London Violence Reduction Unit, which is based on the Greater London Authority, to assess the utility of this information for supporting the commissioning and monitoring the effectiveness of local violence reduction strategies and initiatives.

Health Survey for England

PURPOSE: (PHE Healthy lifestyles work programme) The data which has been anonymised and provided to PHE is used to estimate excess calorie intakes for children and teenagers. The results of these analyses are providing the evidence for a national calorie reduction campaign led by PHE.

Separately, the anonymised data set on adult gambling behaviours will be used by PHE to analyse gambling prevalence and harms as part of an evidence review commissioned by the Department of Health & Social Care. (The PHE remit letter for 2019/20 from the Parliamentary Under Secretary of State for Public Health and Primary Care specifically states that “During the reporting year PHE will complete and publish evidence reviews on the public health impacts associated with prescription drug dependence and gambling”.)

Hospital Episode Statistics (HES)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Public Health Outcomes Framework at http://www.phoutcomes.info/. The findings derived from HES data are used to inform the development and monitor the effectiveness of national policies and initiatives aimed at protecting and improving public health and reducing health inequalities. The HES data is also analysed by PHE to produce statistics to help Local Authorities fulfil their statutory duty to improve the health of their local population, for example through the production of joint strategic needs assessments and local health and wellbeing strategies.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (PHE Mental health work programme) The results of the analyses of IAPT data are published in a range of indicators, analytical tools and reports, including the common mental health disorders profiling tool at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from IAPT data is also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with mental health problems, particularly the NHS Five Year Forward View for Mental Health. This information is also used by Local Authorities to support the local commissioning of mental health services.

Maternity Services Data Set

PURPOSE: (PHE Healthy Lifecourse work programme) The results of the analyses of the MSDS data are published by PHE in a range of indicators, analytical tools and reports, including the child health profiles at

https://fingertips.phe.org.uk/profile/child-health-profiles.

This information is used by PHE to advise on the development and monitor the effectiveness of national child and maternal health policies and initiatives, such as investment in breastfeeding services and child and adult weight management programmes. PHE also undertakes ad hoc analyses of MSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Mental Health Services Data Set (MHSDS)

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Common Mental Health Disorders Profiling Tool at

https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from MHSDS are also used by PHE to develop and assess the effectiveness of national policies aimed at improving the lives of people with mental health problems, and are used by Local Authorities to support the commissioning and provision of mental health services at a local level.

National Child Measurement Programme (NCMP)

PURPOSE: (PHE work programme) The data which has been anonymised and provided to PHE is used to analyse variations and trends in the percentages of children who are underweight, normal weight, overweight and obese. The data is also used to monitor how the proportions of children in these different categories changes as they progress from Reception to Year 6. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the local authority profiles at http://fingertips.phe.org.uk/profile/national-child-measurement-programme.

PHE further uses the data to provide statistics to schools on the percentage of children who are an unhealthy weight. The NCMP findings are also used by PHE to advise on and support the development of national policies to increase the proportion of children who are normal weight, and are used by Local Authorities to commission and provide services that support families to make healthy lifestyle changes.

National Diabetes Audit

PURPOSE: (PHE Cardiovascular disease work programme) The results of the analyses of NDA data are published in a range of indicators, analytical tools and reports, including the diabetes profiles at

https://fingertips.phe.org.uk/profile/diabetes-ft.

The findings derived from NDA data are also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with diabetes, particularly supporting and evaluating the NHS Diabetes Prevention Programme. This information is also used by Local Authorities to support the local commissioning of cardiovascular prevention and treatment services.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (PHE Syndromic surveillance programme) The results of the analyses of NHS 111 data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance reports published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on NHS 111 data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including NHS 111 data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are being used to develop further indicators of care-giving across demographic groups and geographic areas for inclusion in the Dementia Profile published at https://fingertips.phe.org.uk/profile-group/mental-health.

The results of these analyses are being used to understand more about the care provided to people with dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Dementia Profile and the Common Mental Health Disorders profile at https://fingertips.phe.org.uk/profile-group/mental-health.

The findings of these analyses are also used to monitor progress in improving the diagnosis and treatment of dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: PHE Health protection work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the local authority Sexual and Reproductive Health Profiles at https://fingertips.phe.org.uk/profile/sexualhealth.

The SRHAD findings are used by PHE to develop and monitor national policies for Sexual Health and HIV, and by Local Authorities to provide SRH services to improve sexual and reproductive health across England.

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COVID-19:

Covid-19 presents a significant threat to the population in terms of increased morbidity and mortality, particularly among vulnerable groups such as those with pre-existing disease. PHE epidemiological surveillance will be undertaken to monitor and describe the circulation of Covid-19 in the population, and to measure its impact on public health and the healthcare system.

PHE surveillance is required to understand how well Covid-19 response programmes are working and to inform future planning using epidemiological and modelling methods. The results of the analyses of the SUS+ APC and ECDS data linked to the SGSS, CHESS and mortality data are used by PHE to produce aggregate statistical reports that inform the national Covid-19 action plan, the health protection guidance provided to healthcare professionals and the public, and to support Covid-19-related capacity and capability planning in the NHS. Data will be received in daily extract files via MESH and linked and analysed by PHE analysts.

The statistical outputs based on the linked data are published by PHE as aggregate counts and rates (for example, at

https://www.gov.uk/government/organisations/public-health-england/about/statistics),

with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

The guidance for healthcare professionals and the public produced by PHE and other national bodies involved in the Covid-19 response is published at https://www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance.

The PHE remit letter, dated March 2018, sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2018 to March 2019: https://www.gov.uk/government/publications/phe-remit-letter-2018-to-2019

Likewise, the PHE remit letter dated March 2019 sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2019 to March 2020: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/789194/phe-priorities-in-health-and-care-2019-2020-letter.pdf

The PHE remit letter dated April 2020 sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2020 to March 2021, emphasising the focus on COVID-19: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/882570/PHE_Remit_Letter_from_Jo_Churchill_to_Duncan_Selbie.pdf

There has been no remit letter published for 2021 to 2022.

Public Health England (PHE) is the national agency charged with protecting and improving the nation’s health. It is an executive agency of the Department of Health and Social Care (DHSC) and acts on behalf of the Secretary of State to discharge his statutory duties to protect and improve public health in England, and reduce health inequalities, as set out in Sections 2A and 2B of the NHS Act 2006, as inserted by the Health and Social Care Act 2012. These functions and its annual priorities are set out in the remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care (https://www.gov.uk/government/publications/phe-remit-letter-2017-to-2018).

PHE is a direct provider of health protection and health improvement services to patients and the public in England. The successful fulfilment of its remit depends on its ability to process data on the health status of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data it uses it collects directly, but PHE also depends on appropriate and timely access to other sources of health and care data, such as the health status and healthcare provider activity data collected at a national level by NHS Digital.

This Data Sharing Agreement (DSA) supports the statutory remit and core functions of PHE by setting out the justifications and legal basis for the sharing of specified data sets by NHS Digital with PHE.

The majority of the datasets shared between the two organisations are detailed in Section 3 of this DSA. Those additional datasets shared which are not contained in Section 3 are detailed below:

National Child Measurement Programme (NCMP) - annual extract of pseudo/anonymised data (from 2006/7 to latest available)

NHS 111 Repeat Caller Service Data Set – daily extract of pseudo/anonymised data (from 2013/14 M05 to latest available)

Personal Social Services Survey of Adult Carers in England (PSS- SACE) - biannual extract of pseudo/anonymised data (from 2009/10 to latest available)

Recorded Dementia Diagnoses (RDD) Data Set - annual extract of pseudo/anonymised data (from 2016/17 to latest available)

Sexual and Reproductive Health Activity Data (SRHAD) - annual extract of pseudo/anonymised data (from 2010/11 to latest available).

Secondary Uses Service (SUS+) - monthly extract of data provided by SUS team within NHS Digital.

Note that Daily SUS and Daily ECDS are provided by the NHS Digital’s SUS team, not by the Data Production team.

To note, the legal basis for PHE to process each of the datasets is General Data Protection Regulation (GDPR) Article 6(1)e (performance of a task carried out in the public interest or in the exercise of official authority vested in the controller; ) and 9(2)h (the management of the Health and Social Care system and services) and 9(2)i (public health interest). NHS Digital's legal basis to disseminate is Health & Social Care Act 2012- 261(1) and 261(2)(b)(ii).

Please note, specific information regarding the purposes for each dissemination from NHS Digital to PHE is detailed later in this section.

For clarity, this DSA does not cover transfers of data to support the direct provision of treatment and care services to patients, such as the use by PHE of the National Health Application and Infrastructure Services (NHAIS) managed by NHS Digital to identify patients eligible to be called for screening for bowel, breast and cervical cancer as part of the NHS Cancer Screening Programmes. It also excludes transfers of data from NHS Digital to PHE for research purposes that have been approved through the Data Access Request Service (DARS) and for which individual data sharing agreements are in place.

PHE commits to ensuring that all its processing of data transferred from NHS Digital complies with: the legal framework for data protection and confidentiality; the updated Caldicott principles; other associated guidance, particularly the ICO Anonymisation Code; and the information governance assurance framework for health and care organisations codified in the Data Security and Protection Toolkit.

This single DSA differs from the standard NHS Digital data release process; there are a number of reasons for this different arrangement:

- This DSA builds on the letter from the Department of Health and Social Care (DHSC) sponsors of PHE and NHS Digital dated 26th January 2015 confirming the Department’s support for the approach set out herein to the exchange of data between the two organisations in order to support the fulfilment of their respective remits and functions. It also builds on previous Memorandum of Understanding on Data Exchange agreements between PHE and NHS Digital covering the years 2015/16, 2016/17, 2017/18 and the first half of 2018/19.

- This DSA recognises the remit and functions of NHS Digital as set out in the Health & Social Care Act 2012 and the Care Act 2014, and of PHE as set out in its annual remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care. It also recognises the specific legal gateways provided to PHE under Section 60 of the Health & Social Care Act 2001, as re-enacted by Section 251 of the NHS Act 2006 and the associated Health Service (Control of Patient Information) Regulations 2002, to lawfully process confidential patient information. PHE has also been granted specific exemptions from national data opt outs by the Secretary of State in recognition of its national role in protecting and improving public health.

The DHSC sponsors of PHE and NHS Digital, after seeking advice, have confirmed that Section 60 of the Health and Social Care Act 2001, as re-enacted by Section 251 of the NHS Act 2006 and the associated Health Service (Control of Patient Information) Regulations 2002, provide the legal basis for the exchange of personal confidential data between the two organisations where this supports their remit and functions. Section 251 allows the Secretary of State to make regulations to set aside the common law duty of confidentiality for defined public health and medical purposes.

With specific regard to NHS Digital data which has been anonymised in accordance with the ICO Anonymisation Code prior to transfer to PHE, this data is released using NHS Digital powers provided under the Health & Social Care Act 2012. The controls required to ensure the risks of patients being re-identified are minimised in accordance with the ICO Anonymisation Code are set out within the overarching NHS Digital Data Sharing Framework Contract signed by PHE.

If PHE require a new dataset from NHS Digital or if the data provided from NHS Digital to PHE is used for purposes that are different from those for which the data was provided in the first instance, PHE will seek permission, via an amendment to this DSA, from NHS Digital before using the data.

Specific information regarding the purposes for processing for each dataset disseminated by NHS Digital to PHE is detailed below:

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (National Cancer Register) The CWT contains information on patients urgently referred for suspected cancer or to be treated for cancer in NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration-and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (including referral waiting times), treatment (including treatment waiting times) and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. The CWT data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand the impact of patient routes to diagnosis and treatment pathways on patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk.

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (National Cancer Register) The DIDS data contains information on the diagnostic imaging tests, such as x-rays and MRI scans, carried out on cancer patients treated in NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration- and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (such as DIDS), treatment and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. This linked data is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

Hospital Episodes Statistics (HES)

PURPOSE 1: (PHE National Cancer Register) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these patients. The HES data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 2: (PHE Health protection work programme) The patient identifiable HES data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. HES is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 3: (PHE National Congenital Anomaly & Rare Diseases Register) The patient identifiable HES data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register (https://www.gov.uk/guidance/the-national-congenital- anomaly-and-rare-disease-registration-service-ncardrs). PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these individuals.

Linked HES & Civil Registry Deaths

PURPOSE 1: (PHE End of life care work programme) The linked HES/Mortality data contains hospital admissions data and mortality records but no information that could be used to directly identify individual patients is provided to PHE. The data is used by PHE to undertake a range of analyses of the health status and care received by individuals at the end of their lives. It is also used to analyse the place of death and determine whether the care provided beforehand was in a hospital, a residential or nursing establishment, or at home.

PURPOSE 2: (NHS Health Check) The linked pseudonymised HES APC and Civil Registrations (Deaths) – Summary Care Record data set for the period 01/04/2009 - 31/03/2018 will be used to fulfil the third stage of PHE’s analysis strategy to estimate the impact of NHS Health Check attendance on health outcomes. The Primary Care data set ‘NHS Health Checks’ was collected by NHS Digital under Direction on behalf of PHE, and initial analysis was conducted under DARS-NIC-201243-R7L2M.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The PCMD data provided by NHS Digital to PHE details the cause of death but includes no information that could be used to directly identify individual patients. The data is used by PHE to produce a range of statistics on cause-specific death for different demographic groups and geographic areas. These analyses are undertaken on a routine basis by PHE to support its long-term surveillance of non-communicable diseases and to support the work of local public health teams in the discharge of the statutory health improvement duty of Local Authorities.

Secondary Use Service (SUS)

PURPOSE 1: (PHE National Cancer Register) SUS data is essentially an earlier, less ‘clean’ version of the HES data described above (for example, not all duplicate records have been removed) and contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. Data is only provided by NHS Digital for patients with a cancer-related ICD-10 diagnosis code.

Community Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The CSDS provides information on the provision of community-based health and care services to infants, children, young people and adults. It collects data on: patient demographics, such as age, sex, address and GP registration; referrals to community, mental health and social care services; infant and childhood health screening tests and immunisations; special educational needs, child protection and safeguarding assessments; and other information about community-based services. The anonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in the proportions of infants and children reaching developmental milestones, and to analyse the links between child health and educational attainment. It is also used to monitor the use of community-based health and care services, and to produce a range of intelligence outputs to support the commissioning and monitoring of outcomes for community-based services. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities.

Emergency Care Data Set

PURPOSE 1: (PHE Injury prevention and mental health work programmes) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the monitoring of the numbers and trends in patients attending hospital with injuries, particularly violence-related injuries, and because to self-harm. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including delivering the NHS Five Year Forward View for Mental Health and the National Crisis Care Concordat.

PURPOSE 2: (PHE Syndromic surveillance programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its wider duty to protect the nation’s health by providing a national integrated syndromic surveillance system.

Health Survey for England (HSE)

PURPOSE: (PHE Healthy lifestyles work programme) The HSE is a longstanding annual survey of the health and lifestyles of a sample of around 8,000 adults and 2,000 children. The HSE is carried out by NatCen Social Research on behalf of NHS Digital. The HSE data, which has been anonymised, has been published for several years on the UK Data Archive, although additional restrictions have recently been applied to this by NHS Digital to further reduce the risk of any of sample participants being identified. PHE commissioned a boost to the number of children included in the 2015 HSE and requires access to more detailed data on children in households than that ordinarily published by NHS Digital via the UK Data Archive.

Separately, PHE also requires access to a more detailed combined set of HSE data bringing together the responses to the questions on adult gambling behaviours from the 2012, 2015, 2016 and 2018 surveys than is ordinarily published by NHS Digital via the UK Data Archive.

Hospital Episode Statistics (HES)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of a wide range of conditions such as heart disease and stroke, mental health and respiratory disease.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (PHE Mental health work programme) The IAPT data set provides information on access to and outcomes for adults being treated by psychological therapy services across England. It includes patient demographic information and information on referrals to psychological therapy services, mental health assessments and the treatment provided to patients. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence and prevalence of mental health problems such as anxiety disorders and depression. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health, including delivering the NHS Five Year Forward View for Mental Health.

Maternity Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The MSDS provides information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The anonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in maternal health, the use of obstetric and antenatal services, and child health outcomes. The results of these analyses are used to produce a range of health intelligence outputs to support the commissioning and outcomes monitoring of community-based services. They are also used to monitor progress in achieving the Secretary of State’s ambition to halve the number of stillbirths, neonatal and maternal deaths and brain injuries by 2030, and to monitor progress in implementing national initiatives such as the Maternity Transformation Programme.

Mental Health Services Data Set (MHSDS)

PURPOSE: (PHE Mental health work programme) The MHSDS contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals and treatment centres with mental health problems in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of mental health problems such as dementia and depression and anxiety.

National Child Measurement Programme (NCMP)

PURPOSE: (PHE Child health work programme) The NCMP provides information on the height and weight of all children in reception (aged 4-5 years) and year 6 (aged 10-11 years) in schools in England. PHE is the sponsor on behalf of the Secretary of State of the national collection of NCMP data by NHS Digital from all Local Authorities.

National Diabetes Audit

PURPOSE: (PHE Cardiovascular disease work programme) The NDA provides information on the treatment of people with diabetes across England. The audit collects patient demographic information from specialist diabetes services and GP Practices, together with information on the provision of annual care checks, blood glucose levels, achievement of treatment targets, and the health outcomes of people with diabetes. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence, prevalence and treatment of diabetes. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including supporting and evaluating the NHS Diabetes Prevention Programme.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (PHE Syndromic surveillance programme) This data set provides information on calls made to the NHS 111 service by symptomatic patients across England. It includes patient demographic information and information on the symptoms, their severity and the treatment recommended to callers to the service. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its remit to protect the nation’s health by providing a national integrated syndromic surveillance system.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (PHE Mental health work programme) The PSS-SACE provides information on the experiences of persons aged 18 or over who care for another adult, such as the number of hours of care they provide, the support they receive, and their own levels of mental health and wellbeing. No patient identifiable data is collected by NHS Digital in the PSS-SACE. The data, which has been anonymised and provided by NHS Digital to PHE is used to understand more about the types of care being provided, the experiences of carers, their support and training requirements, and the provision of respite opportunities.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (PHE Mental health work programme) The RDD provides information on the number of patients aged 65 and over with a recorded dementia diagnosis. The data is broken down by gender and five year age group for each GP Practice in England. No patient identifiable data is collected by NHS Digital in the RDD Data Set. The data, which has been anonymised and provided by NHS Digital to PHE is used to analyse variations in the numbers and percentages of older people with dementia in different gender and age groups by GP Practice and other geographic areas.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: (PHE Health protection work programme) The SRHAD collects information on the contraception, sexually transmitted infections (STI) and reproductive health advice and care provided to patients attending sexual and reproductive health (SRH) services in England. PHE is the sponsor on behalf of the Secretary of State for the national collection of SRHAD data by NHS Digital from all SRH services. The data, which has been anonymised and provided by NHS Digital to PHE is used to monitor the implementation of key national sexual health policy objectives such as: increasing access to all methods of contraception, including long acting reversible contraception and emergency contraception, and reducing inequalities in access to services; reducing teenage conceptions; and reducing unintended pregnancies.

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COVID-19: Daily SUS+ APC and ECDS

PURPOSE: To enable PHE to process:

a) identifiable Secondary Uses Service (SUS+) Admitted Patient Care (APC) data for ALL patient episodes (open and completed) in hospitals in England (this is a change to the existing agreement D01 IG00232, which currently only covers completed episodes for patients with certain lower respiratory tract infections)

and

b) identifiable Emergency Care Data Set (ECDS) data for ALL emergency care episodes in England.

Daily extracts of identifiable SUS+ APC and ECDS data will be provided to Public Health England (PHE) for the purpose of monitoring patient episodes in hospitals associated with Covid-19.

The SUS+ APC and ECDS data sets contain information on both current and previous treatment episodes for patients attending or admitted to hospitals in England. The SUS+ APC data and ECDS is linked by PHE to the diagnostic and treatment information it holds in its Second Generation Surveillance System (SGSS) and Covid-19 Hospitalisation in England Surveillance System (CHESS) data sets for patients with a Covid-19 diagnosis. It is also linked to the civil registration deaths records held by PHE. (See section 5b below for an explanation of these PHE data sets.)

Access to all SUS+ APC and ECDS records is required by PHE so that it can rapidly and fully identify all current and recent previous treatment episodes for patients with a confirmed and suspected Covid-19 diagnosis.

This linked identifiable data set is analysed by PHE to identify the epidemiological characteristics of patients with Covid-19, including their demographic characteristics, geographic location, date of infection and reasons for any previous hospital episodes. The data is also used by PHE to monitor changes over time in these patients’ epidemiological characteristics, as well as to monitor the length of time they stay in hospital, whether they are treated for other health problems related to their Covid-19 diagnosis and treatment, and to monitor their clinical outcomes from Covid-19 and any other health problems such as healthcare associated infections.

PHE is the national agency charged with protecting and improving the nation’s health. It is an executive agency of the Department of Health and Social Care (DHSC) and acts on behalf of the Secretary of State to discharge his statutory duties to protect and improve public health in England, and reduce health inequalities, as set out in Sections 2A and 2B of the NHS Act 2006 (as inserted by the Health and Social Care Act 2012). These functions and its annual priorities are set out in the remit letter from the Parliamentary Under Secretary of State for Prevention, Public Health and Primary Care (https://www.gov.uk/government/publications/phe-priorities-in-health-and-social-care-2020-to-2021). The remit letter for 2020/21, in particular, sets out the Government’s expectation that PHE will focus on the ongoing response to Covid-19, including “surveillance and modelling to inform action at national and local level … [and] identifying … the longer-term public health impacts of the pandemic”.

The data sets shared are detailed below:

- Secondary Uses Service (SUS+) Admitted Patient Care (APC): Daily extract of identifiable data provided by SUS team within NHS Digital for ALL patient episodes - both open (still in hospital under the same consultant) and completed (discharged, or changed consultant) - in hospitals in England; this is national data, not minimised to specific geographic locations.

The data items provided from SUS+ APC are:

1) Generated Record ID

2) Local Patient Identifier

3) Org Code Local Patient Identifier

4) NHS Number

5) Birth Date

6) Age At CDS Activity Date

7) Episode Age

8) Ethnic Category Code

9) Marital Status

10) NHS Number Status Indicator

11) Gender Code

12) Postcode of Usual Address

13) Hospital Provider Spell No

14) ADMINISTRATIVE CATEGORY (AT START OF EPISODE)

15) ADMINISTRATIVE CATEGORY (ON ADMISSION)

16) Patient Classification

17) Admission Method (Hospital Provider Spell)

18) Discharge Destination (Hospital Provider Spell)

19) Discharge Method (Hospital Provider Spell)

20) Source of Admission (Hospital Provider Spell)

21) Start Date (Hospital Provider Spell)

22) End Date (Hospital Provider Spell)

23) Episode Number

24) Operation Status

25) Episode Start Date

26) Episode End Date

27) Provider Reference No

28) Commissioner Reference No

29) Organisation Code (Code of Provider)

30) Provider Site Code

31) Organisation Code (Code of Commissioner)

32) Site code of Treatment (at start of episode)

33) Consultant Code

34) Main Specialty Code

35) Treatment Function Code

36) GP Practice Code

37) GP Practice Code (Original Data)

38) Referrer Code

39) Referring Organisation Code

40) Episode Duration

41) Episode Duration Grouper

42) Diagnosis Scheme In Use

43) Primary Diagnosis Code

44) Secondary Diagnosis Code 1

45) Secondary Diagnosis Code 2

46) Secondary Diagnosis Code 3

47) Secondary Diagnosis Code 4

48) Secondary Diagnosis Code 5

49) Secondary Diagnosis Code 6

50) Secondary Diagnosis Code 7

51) Secondary Diagnosis Code 8

52) Secondary Diagnosis Code 9

53) Secondary Diagnosis Code 10

54) Secondary Diagnosis Code 11

55) Secondary Diagnosis Code 12

56) Procedure Scheme In Use

57) Primary Procedure Code

58) Primary Procedure Date

59) Secondary Procedure Code 1

60) Secondary Procedure Date 1

61) Secondary Procedure Code 2

62) Secondary Procedure Date 2

63) Secondary Procedure Code 3

64) Secondary Procedure Date 3

65) Secondary Procedure Code 4

66) Secondary Procedure Date 4

67) Secondary Procedure Code 5

68) Secondary Procedure Date 5

69) Secondary Procedure Code 6

70) Secondary Procedure Date 6

71) Secondary Procedure Code 7

72) Secondary Procedure Date 7

73) Secondary Procedure Code 8

74) Secondary Procedure Date 8

75) Secondary Procedure Code 9

76) Secondary Procedure Date 9

77) Secondary Procedure Code 10

78) Secondary Procedure Date 10

79) Secondary Procedure Code 11

80) Secondary Procedure Date 11

81) Secondary Procedure Code 12

82) Secondary Procedure Date 12

83) Organisation Code (Sender)

84) Extract Date

85) Report Period Start Date

86) Report Period End Date

- Emergency Care Data Set (ECDS): Daily extract of identifiable data provided by NHS Digital for all patient episodes in hospitals in England; this is national data, not minimised to specific geographic locations.

The data items provided from ECDS are:

1) LOCAL PATIENT IDENTIFIER (EXTENDED)

2) NHS NUMBER

3) NHS NUMBER STATUS INDICATOR CODE

4) PATIENT PATHWAY IDENTIFIER

5) PERSON BIRTH DATE

6) POSTCODE OF USUAL ADDRESS

7) UNIQUE BOOKING REFERENCE NUMBER (CONVERTED)

8) CLASSIFICATION

9) ETHNIC_CATEGORY

10) EXPIRY_DATE

11) EXPIRY_TIME

12) OA_11

13) START_DATE

14) START_TIME

15) ACCESSIBLE_INFORMATION_PROFESSIONAL_REQUIRED

16) ACCESSIBLE_INFORMATION_PROFESSIONAL_REQUIRED_VALID

17) ACCOMMODATION_STATUS

18) ACCOMMODATION_STATUS_VALID

19) ACUITY

20) ACUITY_VALID_APPROVED

21) AGE_AT_ARRIVAL

22) AGE_AT_CDS_ACTIVITY_DATE

23) AGE_RANGE

24) ARRIVAL_DATE

25) ARRIVAL_MODE

26) ARRIVAL_MODE_VALID_APPROVED

27) ARRI

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (National Cancer Register) The CWT data linked to cancer registration records is used by PHE to analyse trends in the number of urgent referrals for suspected cancer and resulting diagnoses to understand the effectiveness of this referral route for improving patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the Cancer Services tool at https://fingertips.phe.org.uk/profile/cancerservices. The findings derived from the linked CWT and cancer registration data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the NHS England National Cancer Strategy Implementation Plan (https://www.england.nhs.uk/cancer/strategy).

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (PHE National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

Hospital Episodes Statistics (HES)

PURPOSE 1: (PHE National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 2: (PHE Health protection work programme) The findings derived from the linked HES data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections, the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis and the vaccination information at https://www.gov.uk/government/collections/vaccine-uptake.

PURPOSE 3: (PHE National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network (http://www.eurocat-network.eu/). The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

Linked HES & Civil Registry Deaths

PURPOSE1: (PHE End of life care work programme) The results of the analyses undertaken by PHE are published in the End of Life Care Profiles at https://fingertips.phe.org.uk/. These profiles are provided by Local Authority and Clinical Commissioning Group and are used to support local health and social care commissioning, for example by providing statistics on the place of death and nursing and care home bed rates.

PURPOSE 2: (NHS Health Check) The result of these analyses undertaken by PHE will determine the efficacy of the NHS Health Check Programme and important medical outcomes including mortality and medical events via a suite of analytical products such as reports, interactive dashboards and peer-reviewed publications for providers of the NHS Health Check, commissioners of the NHS Health Check and other stakeholders (for instance, NHS England, patients and the public, the primary care community, government, policy makers, charities, UK and international researchers) who wish to better understand the status and outcomes related to the NHS Health Check programme.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of different public health profiles at https://fingertips.phe.org.uk/. PHE also undertakes ad hoc analyses of PCMD to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs). These results of these analyses are provided directly to Local Authorities in the form of aggregate statistics and tables.

Secondary Use Service (SUS)

PURPOSE 1: (PHE National Cancer Register) The linked SUS and National Cancer Register data is used by PHE for the specific purpose of producing a set of monthly-updated cancer outcomes metrics on the performance of the NHS in diagnosing and treating cancer patients as soon as possible, such as cancer stage at diagnosis and the percentage of cases diagnosed as an emergency. These metrics, as well as other statistics based on the analysis of data from the cancer register, are published at http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic_specific_work/cancer_outcome_metrics.

Community Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The results of the analyses of CSDS data undertaken by PHE are published in a range of indicators, analytical tools and reports, including the child and maternal health profiles at https://fingertips.phe.org.uk/ and https://www.gov.uk/government/collections/child-and-maternal-health-statistics. This information is used by PHE to inform the development and monitor the effectiveness of national child and maternal health policies and initiatives. PHE also undertakes ad hoc analyses of CDSD data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Emergency Care Data Set

PURPOSE 1: (PHE Injury prevention and mental health work programmes) The results of the analyses of ECDS data are published in a range of indicators, analytical tools and reports, including the crisis care profiles at https://fingertips.phe.org.uk/profile-group/mental-health/profile/crisis-care. The findings derived from ECDS data are further used by PHE to monitor the effectiveness of national policies aimed at preventing injuries and self-harm, such as the National Crisis Care Concordat. This information is also used by local multi-agency partnerships to support the commissioning of violence and self-harm prevention services at a local level.

PURPOSE 2: (PHE Syndromic surveillance programme) The results of the analyses of ECDS data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance report published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on EDCS data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including Emergency Care Data Set data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

Health Survey for England

PURPOSE: (PHE Healthy lifestyles work programme) The data which has been anonymised and provided to PHE is used to estimate excess calorie intakes for children and teenagers. The results of these analyses are providing the evidence for a national calorie reduction campaign led by PHE.

Separately, the anonymised data set on adult gambling behaviours will be used by PHE to analyse gambling prevalence and harms as part of an evidence review commissioned by the Department of Health & Social Care. (The PHE remit letter for 2019/20 from the Parliamentary Under Secretary of State for Public Health and Primary Care specifically states that “During the reporting year PHE will complete and publish evidence reviews on the public health impacts associated with prescription drug dependence and gambling”.)

Hospital Episode Statistics (HES)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Public Health Outcomes Framework at http://www.phoutcomes.info/. The findings derived from HES data are used to inform the development and monitor the effectiveness of national policies and initiatives aimed at protecting and improving public health and reducing health inequalities. The HES data is also analysed by PHE to produce statistics to help Local Authorities fulfil their statutory duty to improve the health of their local population, for example through the production of joint strategic needs assessments and local health and wellbeing strategies.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (PHE Mental health work programme) The results of the analyses of IAPT data are published in a range of indicators, analytical tools and reports, including the common mental health disorders profiling tool at https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from IAPT data is also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with mental health problems, particularly the NHS Five Year Forward View for Mental Health. This information is also used by Local Authorities to support the local commissioning of mental health services.

Maternity Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The results of the analyses of the MSDS data are published by PHE in a range of indicators, analytical tools and reports, including the child health profiles at https://fingertips.phe.org.uk/profile/child-health-profiles. The findings derived from MSDS data are further used by PHE to develop and assess the effectiveness of national policies aimed at improving the health and care services provided to mothers and babies. PHE also undertakes ad hoc analyses of MSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Mental Health Services Data Set (MHSDS)

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Common Mental Health Disorders Profiling Tool at https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from MHSDS are also used by PHE to develop and assess the effectiveness of national policies aimed at improving the lives of people with mental health problems, and are used by Local Authorities to support the commissioning and provision of mental health services at a local level.

National Child Measurement Programme (NCMP)

PURPOSE: (PHE Child health work programme) The data which has been anonymised and provided to PHE is used to analyse variations and trends in the percentages of children who are underweight, normal weight, overweight and obese. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the local authority profiles at http://fingertips.phe.org.uk/profile/national-child-measurement-programme. PHE also use the data to provide statistics to schools on the percentage of children who are an unhealthy weight. The NCMP findings are used by PHE to develop national policies to increase the proportion of children who are normal weight, and are used by Local Authorities to commission and provide services that support families to make healthy lifestyle changes.

National Diabetes Audit

PURPOSE: (PHE Cardiovascular disease work programme) The results of the analyses of NDA data are published in a range of indicators, analytical tools and reports, including the diabetes profiles at https://fingertips.phe.org.uk/profile/diabetes-ft. The findings derived from NDA data are also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with diabetes, particularly supporting and evaluating the NHS Diabetes Prevention Programme. This information is also used by Local Authorities to support the local commissioning of cardiovascular prevention and treatment services.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (PHE Syndromic surveillance programme) The results of the analyses of NHS 111 data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance reports published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on NHS 111 data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including NHS 111 data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are being used to develop further indicators of care-giving across demographic groups and geographic areas for inclusion in the Dementia Profile published at https://fingertips.phe.org.uk/profile-group/mental-health. The results of these analyses are being used to understand more about the care provided to people with dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Dementia Profile and the Common Mental Health Disorders profile at https://fingertips.phe.org.uk/profile-group/mental-health. The findings of these analyses are also used to monitor progress in improving the diagnosis and treatment of dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: PHE Health protection work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the local authority Sexual and Reproductive Health Profiles at https://fingertips.phe.org.uk/profile/sexualhealth. The SRHAD findings are used by PHE to develop and monitor national policies for Sexual Health and HIV, and by Local Authorities to provide SRH services to improve sexual and reproductive health across England.

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COVID-19:

Covid-19 presents a significant threat to the population in terms of increased morbidity and mortality, particularly among vulnerable groups such as those with pre-existing disease. PHE epidemiological surveillance will be undertaken to monitor and describe the circulation of Covid-19 in the population, and to measure its impact on public health and the healthcare system.

PHE surveillance is required to understand how well Covid-19 response programmes are working and to inform future planning using epidemiological and modelling methods. The results of the analyses of the SUS+ APC and ECDS data linked to the SGSS, CHESS and mortality data are used by PHE to produce aggregate statistical reports that inform the national Covid-19 action plan, the health protection guidance provided to healthcare professionals and the public, and to support Covid-19-related capacity and capability planning in the NHS. Data will be received in daily extract files via MESH and linked and analysed by PHE analysts.

The statistical outputs based on the linked data are published by PHE as aggregate counts and rates (for example, at https://www.gov.uk/government/organisations/public-health-england/about/statistics), with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

The guidance for healthcare professionals and the public produced by PHE and other national bodies involved in the Covid-19 response is published at https://www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance.

The PHE remit letter, dated March 2018, sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2018 to March 2019: https://www.gov.uk/government/publications/phe-remit-letter-2018-to-2019

Likewise, the PHE remit letter dated March 2019 sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2019 to March 2020: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/789194/phe-priorities-in-health-and-care-2019-2020-letter.pdf

Public Health England (PHE) is the national agency charged with protecting and improving the nation’s health. It is an executive agency of the Department of Health and Social Care (DHSC) and acts on behalf of the Secretary of State to discharge his statutory duties to protect and improve public health in England, and reduce health inequalities, as set out in Sections 2A and 2B of the NHS Act 2006, as inserted by the Health and Social Care Act 2012. These functions and its annual priorities are set out in the remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care (https://www.gov.uk/government/publications/phe-remit-letter-2017-to-2018).

PHE is a direct provider of health protection and health improvement services to patients and the public in England. The successful fulfilment of its remit depends on its ability to process data on the health status of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data it uses it collects directly, but PHE also depends on appropriate and timely access to other sources of health and care data, such as the health status and healthcare provider activity data collected at a national level by NHS Digital.

This Data Sharing Agreement (DSA) supports the statutory remit and core functions of PHE by setting out the justifications and legal basis for the sharing of specified data sets by NHS Digital with PHE.

The majority of the datasets shared between the two organisations are detailed in Section 3 of this DSA. Those additional datasets shared which are not contained in Section 3 are detailed below:

National Child Measurement Programme (NCMP) - annual extract of pseudo/anonymised data (from 2006/7 to latest available)

NHS 111 Repeat Caller Service Data Set – daily extract of pseudo/anonymised data (from 2013/14 M05 to latest available)

Personal Social Services Survey of Adult Carers in England (PSS- SACE) - biannual extract of pseudo/anonymised data (from 2009/10 to latest available)

Recorded Dementia Diagnoses (RDD) Data Set - annual extract of pseudo/anonymised data (from 2016/17 to latest available)

Sexual and Reproductive Health Activity Data (SRHAD) - annual extract of pseudo/anonymised data (from 2010/11 to latest available).

Secondary Uses Service (SUS+) - monthly extract of data provided by SUS team within NHS Digital.

Note that Daily SUS and Daily ECDS are provided by the NHS Digital’s SUS team, not by the Data Production team.

To note, the legal basis for PHE to process each of the datasets is General Data Protection Regulation (GDPR) Article 6(1)e (performance of a task carried out in the public interest or in the exercise of official authority vested in the controller; ) and 9(2)h (the management of the Health and Social Care system and services) and 9(2)i (public health interest). NHS Digital's legal basis to disseminate is Health & Social Care Act 2012- 261(1) and 261(2)(b)(ii).

Please note, specific information regarding the purposes for each dissemination from NHS Digital to PHE is detailed later in this section.

For clarity, this DSA does not cover transfers of data to support the direct provision of treatment and care services to patients, such as the use by PHE of the National Health Application and Infrastructure Services (NHAIS) managed by NHS Digital to identify patients eligible to be called for screening for bowel, breast and cervical cancer as part of the NHS Cancer Screening Programmes. It also excludes transfers of data from NHS Digital to PHE for research purposes that have been approved through the Data Access Request Service (DARS) and for which individual data sharing agreements are in place.

PHE commits to ensuring that all its processing of data transferred from NHS Digital complies with: the legal framework for data protection and confidentiality; the updated Caldicott principles; other associated guidance, particularly the ICO Anonymisation Code; and the information governance assurance framework for health and care organisations codified in the Data Security and Protection Toolkit.

This single DSA differs from the standard NHS Digital data release process; there are a number of reasons for this different arrangement:

- This DSA builds on the letter from the Department of Health and Social Care (DHSC) sponsors of PHE and NHS Digital dated 26th January 2015 confirming the Department’s support for the approach set out herein to the exchange of data between the two organisations in order to support the fulfilment of their respective remits and functions. It also builds on previous Memorandum of Understanding on Data Exchange agreements between PHE and NHS Digital covering the years 2015/16, 2016/17, 2017/18 and the first half of 2018/19.

- This DSA recognises the remit and functions of NHS Digital as set out in the Health & Social Care Act 2012 and the Care Act 2014, and of PHE as set out in its annual remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care. It also recognises the specific legal gateways provided to PHE under Section 60 of the Health & Social Care Act 2001, as re-enacted by Section 251 of the NHS Act 2006 and the associated Health Service (Control of Patient Information) Regulations 2002, to lawfully process confidential patient information. PHE has also been granted specific exemptions from national data opt outs by the Secretary of State in recognition of its national role in protecting and improving public health.

The DHSC sponsors of PHE and NHS Digital, after seeking advice, have confirmed that Section 60 of the Health and Social Care Act 2001, as re-enacted by Section 251 of the NHS Act 2006 and the associated Health Service (Control of Patient Information) Regulations 2002, provide the legal basis for the exchange of personal confidential data between the two organisations where this supports their remit and functions. Section 251 allows the Secretary of State to make regulations to set aside the common law duty of confidentiality for defined public health and medical purposes.

With specific regard to NHS Digital data which has been anonymised in accordance with the ICO Anonymisation Code prior to transfer to PHE, this data is released using NHS Digital powers provided under the Health & Social Care Act 2012. The controls required to ensure the risks of patients being re-identified are minimised in accordance with the ICO Anonymisation Code are set out within the overarching NHS Digital Data Sharing Framework Contract signed by PHE.

If PHE require a new dataset from NHS Digital or if the data provided from NHS Digital to PHE is used for purposes that are different from those for which the data was provided in the first instance, PHE will seek permission, via an amendment to this DSA, from NHS Digital before using the data.

Specific information regarding the purposes for processing for each dataset disseminated by NHS Digital to PHE is detailed below:

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (National Cancer Register) The CWT contains information on patients urgently referred for suspected cancer or to be treated for cancer in NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration-and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (including referral waiting times), treatment (including treatment waiting times) and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. The CWT data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand the impact of patient routes to diagnosis and treatment pathways on patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk.

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (National Cancer Register) The DIDS data contains information on the diagnostic imaging tests, such as x-rays and MRI scans, carried out on cancer patients treated in NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration- and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (such as DIDS), treatment and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. This linked data is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

Hospital Episodes Statistics (HES)

PURPOSE 1: (PHE National Cancer Register) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these patients. The HES data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 2: (PHE Health protection work programme) The patient identifiable HES data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. HES is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 3: (PHE National Congenital Anomaly & Rare Diseases Register) The patient identifiable HES data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register (https://www.gov.uk/guidance/the-national-congenital- anomaly-and-rare-disease-registration-service-ncardrs). PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these individuals.

Linked HES & Civil Registry Deaths

PURPOSE 1: (PHE End of life care work programme) The linked HES/Mortality data contains hospital admissions data and mortality records but no information that could be used to directly identify individual patients is provided to PHE. The data is used by PHE to undertake a range of analyses of the health status and care received by individuals at the end of their lives. It is also used to analyse the place of death and determine whether the care provided beforehand was in a hospital, a residential or nursing establishment, or at home.

PURPOSE 2: (NHS Health Check) The linked pseudonymised HES APC and Civil Registrations (Deaths) – Summary Care Record data set for the period 01/04/2009 - 31/03/2018 will be used to fulfil the third stage of PHE’s analysis strategy to estimate the impact of NHS Health Check attendance on health outcomes. The Primary Care data set ‘NHS Health Checks’ was collected by NHS Digital under Direction on behalf of PHE, and initial analysis was conducted under DARS-NIC-201243-R7L2M.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The PCMD data provided by NHS Digital to PHE details the cause of death but includes no information that could be used to directly identify individual patients. The data is used by PHE to produce a range of statistics on cause-specific death for different demographic groups and geographic areas. These analyses are undertaken on a routine basis by PHE to support its long-term surveillance of non-communicable diseases and to support the work of local public health teams in the discharge of the statutory health improvement duty of Local Authorities.

Secondary Use Service (SUS)

PURPOSE 1: (PHE National Cancer Register) SUS data is essentially an earlier, less ‘clean’ version of the HES data described above (for example, not all duplicate records have been removed) and contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. Data is only provided by NHS Digital for patients with a cancer-related ICD-10 diagnosis code.

Community Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The CSDS provides information on the provision of community-based health and care services to infants, children, young people and adults. It collects data on: patient demographics, such as age, sex, address and GP registration; referrals to community, mental health and social care services; infant and childhood health screening tests and immunisations; special educational needs, child protection and safeguarding assessments; and other information about community-based services. The anonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in the proportions of infants and children reaching developmental milestones, and to analyse the links between child health and educational attainment. It is also used to monitor the use of community-based health and care services, and to produce a range of intelligence outputs to support the commissioning and monitoring of outcomes for community-based services. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities.

Emergency Care Data Set

PURPOSE 1: (PHE Injury prevention and mental health work programmes) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the monitoring of the numbers and trends in patients attending hospital with injuries, particularly violence-related injuries, and because to self-harm. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including delivering the NHS Five Year Forward View for Mental Health and the National Crisis Care Concordat.

PURPOSE 2: (PHE Syndromic surveillance programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its wider duty to protect the nation’s health by providing a national integrated syndromic surveillance system.

Health Survey for England (HSE)

PURPOSE: (PHE Healthy lifestyles work programme) The HSE is a longstanding annual survey of the health and lifestyles of a sample of around 8,000 adults and 2,000 children. The HSE is carried out by NatCen Social Research on behalf of NHS Digital. The HSE data, which has been anonymised, has been published for several years on the UK Data Archive, although additional restrictions have recently been applied to this by NHS Digital to further reduce the risk of any of sample participants being identified. PHE commissioned a boost to the number of children included in the 2015 HSE and requires access to more detailed data on children in households than that ordinarily published by NHS Digital via the UK Data Archive.

Separately, PHE also requires access to a more detailed combined set of HSE data bringing together the responses to the questions on adult gambling behaviours from the 2012, 2015, 2016 and 2018 surveys than is ordinarily published by NHS Digital via the UK Data Archive.

Hospital Episode Statistics (HES)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of a wide range of conditions such as heart disease and stroke, mental health and respiratory disease.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (PHE Mental health work programme) The IAPT data set provides information on access to and outcomes for adults being treated by psychological therapy services across England. It includes patient demographic information and information on referrals to psychological therapy services, mental health assessments and the treatment provided to patients. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence and prevalence of mental health problems such as anxiety disorders and depression. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health, including delivering the NHS Five Year Forward View for Mental Health.

Maternity Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The MSDS provides information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The anonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in maternal health, the use of obstetric and antenatal services, and child health outcomes. The results of these analyses are used to produce a range of health intelligence outputs to support the commissioning and outcomes monitoring of community-based services. They are also used to monitor progress in achieving the Secretary of State’s ambition to halve the number of stillbirths, neonatal and maternal deaths and brain injuries by 2030, and to monitor progress in implementing national initiatives such as the Maternity Transformation Programme.

Mental Health Services Data Set (MHSDS)

PURPOSE: (PHE Mental health work programme) The MHSDS contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals and treatment centres with mental health problems in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of mental health problems such as dementia and depression and anxiety.

National Child Measurement Programme (NCMP)

PURPOSE: (PHE Child health work programme) The NCMP provides information on the height and weight of all children in reception (aged 4-5 years) and year 6 (aged 10-11 years) in schools in England. PHE is the sponsor on behalf of the Secretary of State of the national collection of NCMP data by NHS Digital from all Local Authorities.

National Diabetes Audit

PURPOSE: (PHE Cardiovascular disease work programme) The NDA provides information on the treatment of people with diabetes across England. The audit collects patient demographic information from specialist diabetes services and GP Practices, together with information on the provision of annual care checks, blood glucose levels, achievement of treatment targets, and the health outcomes of people with diabetes. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence, prevalence and treatment of diabetes. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including supporting and evaluating the NHS Diabetes Prevention Programme.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (PHE Syndromic surveillance programme) This data set provides information on calls made to the NHS 111 service by symptomatic patients across England. It includes patient demographic information and information on the symptoms, their severity and the treatment recommended to callers to the service. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its remit to protect the nation’s health by providing a national integrated syndromic surveillance system.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (PHE Mental health work programme) The PSS-SACE provides information on the experiences of persons aged 18 or over who care for another adult, such as the number of hours of care they provide, the support they receive, and their own levels of mental health and wellbeing. No patient identifiable data is collected by NHS Digital in the PSS-SACE. The data, which has been anonymised and provided by NHS Digital to PHE is used to understand more about the types of care being provided, the experiences of carers, their support and training requirements, and the provision of respite opportunities.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (PHE Mental health work programme) The RDD provides information on the number of patients aged 65 and over with a recorded dementia diagnosis. The data is broken down by gender and five year age group for each GP Practice in England. No patient identifiable data is collected by NHS Digital in the RDD Data Set. The data, which has been anonymised and provided by NHS Digital to PHE is used to analyse variations in the numbers and percentages of older people with dementia in different gender and age groups by GP Practice and other geographic areas.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: (PHE Health protection work programme) The SRHAD collects information on the contraception, sexually transmitted infections (STI) and reproductive health advice and care provided to patients attending sexual and reproductive health (SRH) services in England. PHE is the sponsor on behalf of the Secretary of State for the national collection of SRHAD data by NHS Digital from all SRH services. The data, which has been anonymised and provided by NHS Digital to PHE is used to monitor the implementation of key national sexual health policy objectives such as: increasing access to all methods of contraception, including long acting reversible contraception and emergency contraception, and reducing inequalities in access to services; reducing teenage conceptions; and reducing unintended pregnancies.

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COVID-19: Daily SUS+ APC and ECDS

PURPOSE: To enable PHE to process:

a) identifiable Secondary Uses Service (SUS+) Admitted Patient Care (APC) data for ALL patient episodes (open and completed) in hospitals in England (this is a change to the existing agreement D01 IG00232, which currently only covers completed episodes for patients with certain lower respiratory tract infections)

and

b) identifiable Emergency Care Data Set (ECDS) data for ALL emergency care episodes in England.

Daily extracts of identifiable SUS+ APC and ECDS data will be provided to Public Health England (PHE) for the purpose of monitoring patient episodes in hospitals associated with Covid-19.

The SUS+ APC and ECDS data sets contain information on both current and previous treatment episodes for patients attending or admitted to hospitals in England. The SUS+ APC data and ECDS is linked by PHE to the diagnostic and treatment information it holds in its Second Generation Surveillance System (SGSS) and Covid-19 Hospitalisation in England Surveillance System (CHESS) data sets for patients with a Covid-19 diagnosis. It is also linked to the civil registration deaths records held by PHE. (See section 5b below for an explanation of these PHE data sets.)

Access to all SUS+ APC and ECDS records is required by PHE so that it can rapidly and fully identify all current and recent previous treatment episodes for patients with a confirmed and suspected Covid-19 diagnosis.

This linked identifiable data set is analysed by PHE to identify the epidemiological characteristics of patients with Covid-19, including their demographic characteristics, geographic location, date of infection and reasons for any previous hospital episodes. The data is also used by PHE to monitor changes over time in these patients’ epidemiological characteristics, as well as to monitor the length of time they stay in hospital, whether they are treated for other health problems related to their Covid-19 diagnosis and treatment, and to monitor their clinical outcomes from Covid-19 and any other health problems such as healthcare associated infections.

PHE is the national agency charged with protecting and improving the nation’s health. It is an executive agency of the Department of Health and Social Care (DHSC) and acts on behalf of the Secretary of State to discharge his statutory duties to protect and improve public health in England, and reduce health inequalities, as set out in Sections 2A and 2B of the NHS Act 2006 (as inserted by the Health and Social Care Act 2012). These functions and its annual priorities are set out in the remit letter from the Parliamentary Under Secretary of State for Prevention, Public Health and Primary Care (https://www.gov.uk/government/publications/phe-priorities-in-health-and-social-care-2020-to-2021). The remit letter for 2020/21, in particular, sets out the Government’s expectation that PHE will focus on the ongoing response to Covid-19, including “surveillance and modelling to inform action at national and local level … [and] identifying … the longer-term public health impacts of the pandemic”.

The data sets shared are detailed below:

- Secondary Uses Service (SUS+) Admitted Patient Care (APC): Daily extract of identifiable data provided by SUS team within NHS Digital for ALL patient episodes - both open (still in hospital under the same consultant) and completed (discharged, or changed consultant) - in hospitals in England; this is national data, not minimised to specific geographic locations.

The data items provided from SUS+ APC are:

1) Generated Record ID

2) Local Patient Identifier

3) Org Code Local Patient Identifier

4) NHS Number

5) Birth Date

6) Age At CDS Activity Date

7) Episode Age

8) Ethnic Category Code

9) Marital Status

10) NHS Number Status Indicator

11) Gender Code

12) Postcode of Usual Address

13) Hospital Provider Spell No

14) ADMINISTRATIVE CATEGORY (AT START OF EPISODE)

15) ADMINISTRATIVE CATEGORY (ON ADMISSION)

16) Patient Classification

17) Admission Method (Hospital Provider Spell)

18) Discharge Destination (Hospital Provider Spell)

19) Discharge Method (Hospital Provider Spell)

20) Source of Admission (Hospital Provider Spell)

21) Start Date (Hospital Provider Spell)

22) End Date (Hospital Provider Spell)

23) Episode Number

24) Operation Status

25) Episode Start Date

26) Episode End Date

27) Provider Reference No

28) Commissioner Reference No

29) Organisation Code (Code of Provider)

30) Provider Site Code

31) Organisation Code (Code of Commissioner)

32) Site code of Treatment (at start of episode)

33) Consultant Code

34) Main Specialty Code

35) Treatment Function Code

36) GP Practice Code

37) GP Practice Code (Original Data)

38) Referrer Code

39) Referring Organisation Code

40) Episode Duration

41) Episode Duration Grouper

42) Diagnosis Scheme In Use

43) Primary Diagnosis Code

44) Secondary Diagnosis Code 1

45) Secondary Diagnosis Code 2

46) Secondary Diagnosis Code 3

47) Secondary Diagnosis Code 4

48) Secondary Diagnosis Code 5

49) Secondary Diagnosis Code 6

50) Secondary Diagnosis Code 7

51) Secondary Diagnosis Code 8

52) Secondary Diagnosis Code 9

53) Secondary Diagnosis Code 10

54) Secondary Diagnosis Code 11

55) Secondary Diagnosis Code 12

56) Procedure Scheme In Use

57) Primary Procedure Code

58) Primary Procedure Date

59) Secondary Procedure Code 1

60) Secondary Procedure Date 1

61) Secondary Procedure Code 2

62) Secondary Procedure Date 2

63) Secondary Procedure Code 3

64) Secondary Procedure Date 3

65) Secondary Procedure Code 4

66) Secondary Procedure Date 4

67) Secondary Procedure Code 5

68) Secondary Procedure Date 5

69) Secondary Procedure Code 6

70) Secondary Procedure Date 6

71) Secondary Procedure Code 7

72) Secondary Procedure Date 7

73) Secondary Procedure Code 8

74) Secondary Procedure Date 8

75) Secondary Procedure Code 9

76) Secondary Procedure Date 9

77) Secondary Procedure Code 10

78) Secondary Procedure Date 10

79) Secondary Procedure Code 11

80) Secondary Procedure Date 11

81) Secondary Procedure Code 12

82) Secondary Procedure Date 12

83) Organisation Code (Sender)

84) Extract Date

85) Report Period Start Date

86) Report Period End Date

- Emergency Care Data Set (ECDS): Daily extract of identifiable data provided by NHS Digital for all patient episodes in hospitals in England; this is national data, not minimised to specific geographic locations.

The data items provided from ECDS are:

1) LOCAL PATIENT IDENTIFIER (EXTENDED)

2) NHS NUMBER

3) NHS NUMBER STATUS INDICATOR CODE

4) PATIENT PATHWAY IDENTIFIER

5) PERSON BIRTH DATE

6) POSTCODE OF USUAL ADDRESS

7) UNIQUE BOOKING REFERENCE NUMBER (CONVERTED)

8) CLASSIFICATION

9) ETHNIC_CATEGORY

10) EXPIRY_DATE

11) EXPIRY_TIME

12) OA_11

13) START_DATE

14) START_TIME

15) ACCESSIBLE_INFORMATION_PROFESSIONAL_REQUIRED

16) ACCESSIBLE_INFORMATION_PROFESSIONAL_REQUIRED_VALID

17) ACCOMMODATION_STATUS

18) ACCOMMODATION_STATUS_VALID

19) ACUITY

20) ACUITY_VALID_APPROVED

21) AGE_AT_ARRIVAL

22) AGE_AT_CDS_ACTIVITY_DATE

23) AGE_RANGE

24) ARRIVAL_DATE

25) ARRIVAL_MODE

26) ARRIVAL_MODE_VALID_APPROVED

27) ARRI

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (National Cancer Register) The CWT data linked to cancer registration records is used by PHE to analyse trends in the number of urgent referrals for suspected cancer and resulting diagnoses to understand the effectiveness of this referral route for improving patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the Cancer Services tool at https://fingertips.phe.org.uk/profile/cancerservices. The findings derived from the linked CWT and cancer registration data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the NHS England National Cancer Strategy Implementation Plan (https://www.england.nhs.uk/cancer/strategy).

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (PHE National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

Hospital Episodes Statistics (HES)

PURPOSE 1: (PHE National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 2: (PHE Health protection work programme) The findings derived from the linked HES data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections, the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis and the vaccination information at https://www.gov.uk/government/collections/vaccine-uptake.

PURPOSE 3: (PHE National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network (http://www.eurocat-network.eu/). The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

Linked HES & Civil Registry Deaths

PURPOSE1: (PHE End of life care work programme) The results of the analyses undertaken by PHE are published in the End of Life Care Profiles at https://fingertips.phe.org.uk/. These profiles are provided by Local Authority and Clinical Commissioning Group and are used to support local health and social care commissioning, for example by providing statistics on the place of death and nursing and care home bed rates.

PURPOSE 2: (NHS Health Check) The result of these analyses undertaken by PHE will determine the efficacy of the NHS Health Check Programme and important medical outcomes including mortality and medical events via a suite of analytical products such as reports, interactive dashboards and peer-reviewed publications for providers of the NHS Health Check, commissioners of the NHS Health Check and other stakeholders (for instance, NHS England, patients and the public, the primary care community, government, policy makers, charities, UK and international researchers) who wish to better understand the status and outcomes related to the NHS Health Check programme.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of different public health profiles at https://fingertips.phe.org.uk/. PHE also undertakes ad hoc analyses of PCMD to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs). These results of these analyses are provided directly to Local Authorities in the form of aggregate statistics and tables.

Secondary Use Service (SUS)

PURPOSE 1: (PHE National Cancer Register) The linked SUS and National Cancer Register data is used by PHE for the specific purpose of producing a set of monthly-updated cancer outcomes metrics on the performance of the NHS in diagnosing and treating cancer patients as soon as possible, such as cancer stage at diagnosis and the percentage of cases diagnosed as an emergency. These metrics, as well as other statistics based on the analysis of data from the cancer register, are published at http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic_specific_work/cancer_outcome_metrics.

Community Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The results of the analyses of CSDS data undertaken by PHE are published in a range of indicators, analytical tools and reports, including the child and maternal health profiles at https://fingertips.phe.org.uk/ and https://www.gov.uk/government/collections/child-and-maternal-health-statistics. This information is used by PHE to inform the development and monitor the effectiveness of national child and maternal health policies and initiatives. PHE also undertakes ad hoc analyses of CDSD data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Emergency Care Data Set

PURPOSE 1: (PHE Injury prevention and mental health work programmes) The results of the analyses of ECDS data are published in a range of indicators, analytical tools and reports, including the crisis care profiles at https://fingertips.phe.org.uk/profile-group/mental-health/profile/crisis-care. The findings derived from ECDS data are further used by PHE to monitor the effectiveness of national policies aimed at preventing injuries and self-harm, such as the National Crisis Care Concordat. This information is also used by local multi-agency partnerships to support the commissioning of violence and self-harm prevention services at a local level.

PURPOSE 2: (PHE Syndromic surveillance programme) The results of the analyses of ECDS data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance report published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on EDCS data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including Emergency Care Data Set data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

Health Survey for England

PURPOSE: (PHE Healthy lifestyles work programme) The data which has been anonymised and provided to PHE is used to estimate excess calorie intakes for children and teenagers. The results of these analyses are providing the evidence for a national calorie reduction campaign led by PHE.

Separately, the anonymised data set on adult gambling behaviours will be used by PHE to analyse gambling prevalence and harms as part of an evidence review commissioned by the Department of Health & Social Care. (The PHE remit letter for 2019/20 from the Parliamentary Under Secretary of State for Public Health and Primary Care specifically states that “During the reporting year PHE will complete and publish evidence reviews on the public health impacts associated with prescription drug dependence and gambling”.)

Hospital Episode Statistics (HES)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Public Health Outcomes Framework at http://www.phoutcomes.info/. The findings derived from HES data are used to inform the development and monitor the effectiveness of national policies and initiatives aimed at protecting and improving public health and reducing health inequalities. The HES data is also analysed by PHE to produce statistics to help Local Authorities fulfil their statutory duty to improve the health of their local population, for example through the production of joint strategic needs assessments and local health and wellbeing strategies.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (PHE Mental health work programme) The results of the analyses of IAPT data are published in a range of indicators, analytical tools and reports, including the common mental health disorders profiling tool at https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from IAPT data is also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with mental health problems, particularly the NHS Five Year Forward View for Mental Health. This information is also used by Local Authorities to support the local commissioning of mental health services.

Maternity Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The results of the analyses of the MSDS data are published by PHE in a range of indicators, analytical tools and reports, including the child health profiles at https://fingertips.phe.org.uk/profile/child-health-profiles. The findings derived from MSDS data are further used by PHE to develop and assess the effectiveness of national policies aimed at improving the health and care services provided to mothers and babies. PHE also undertakes ad hoc analyses of MSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Mental Health Services Data Set (MHSDS)

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Common Mental Health Disorders Profiling Tool at https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from MHSDS are also used by PHE to develop and assess the effectiveness of national policies aimed at improving the lives of people with mental health problems, and are used by Local Authorities to support the commissioning and provision of mental health services at a local level.

National Child Measurement Programme (NCMP)

PURPOSE: (PHE Child health work programme) The data which has been anonymised and provided to PHE is used to analyse variations and trends in the percentages of children who are underweight, normal weight, overweight and obese. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the local authority profiles at http://fingertips.phe.org.uk/profile/national-child-measurement-programme. PHE also use the data to provide statistics to schools on the percentage of children who are an unhealthy weight. The NCMP findings are used by PHE to develop national policies to increase the proportion of children who are normal weight, and are used by Local Authorities to commission and provide services that support families to make healthy lifestyle changes.

National Diabetes Audit

PURPOSE: (PHE Cardiovascular disease work programme) The results of the analyses of NDA data are published in a range of indicators, analytical tools and reports, including the diabetes profiles at https://fingertips.phe.org.uk/profile/diabetes-ft. The findings derived from NDA data are also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with diabetes, particularly supporting and evaluating the NHS Diabetes Prevention Programme. This information is also used by Local Authorities to support the local commissioning of cardiovascular prevention and treatment services.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (PHE Syndromic surveillance programme) The results of the analyses of NHS 111 data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance reports published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on NHS 111 data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including NHS 111 data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are being used to develop further indicators of care-giving across demographic groups and geographic areas for inclusion in the Dementia Profile published at https://fingertips.phe.org.uk/profile-group/mental-health. The results of these analyses are being used to understand more about the care provided to people with dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Dementia Profile and the Common Mental Health Disorders profile at https://fingertips.phe.org.uk/profile-group/mental-health. The findings of these analyses are also used to monitor progress in improving the diagnosis and treatment of dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: PHE Health protection work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the local authority Sexual and Reproductive Health Profiles at https://fingertips.phe.org.uk/profile/sexualhealth. The SRHAD findings are used by PHE to develop and monitor national policies for Sexual Health and HIV, and by Local Authorities to provide SRH services to improve sexual and reproductive health across England.

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COVID-19:

Covid-19 presents a significant threat to the population in terms of increased morbidity and mortality, particularly among vulnerable groups such as those with pre-existing disease. PHE epidemiological surveillance will be undertaken to monitor and describe the circulation of Covid-19 in the population, and to measure its impact on public health and the healthcare system.

PHE surveillance is required to understand how well Covid-19 response programmes are working and to inform future planning using epidemiological and modelling methods. The results of the analyses of the SUS+ APC and ECDS data linked to the SGSS, CHESS and mortality data are used by PHE to produce aggregate statistical reports that inform the national Covid-19 action plan, the health protection guidance provided to healthcare professionals and the public, and to support Covid-19-related capacity and capability planning in the NHS. Data will be received in daily extract files via MESH and linked and analysed by PHE analysts.

The statistical outputs based on the linked data are published by PHE as aggregate counts and rates (for example, at https://www.gov.uk/government/organisations/public-health-england/about/statistics), with small numbers suppressed in accordance with NHS Digital and Office for National Statistics guidance.

The guidance for healthcare professionals and the public produced by PHE and other national bodies involved in the Covid-19 response is published at https://www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance.

The PHE remit letter, dated March 2018, sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2018 to March 2019: https://www.gov.uk/government/publications/phe-remit-letter-2018-to-2019

Likewise, the PHE remit letter dated March 2019 sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2019 to March 2020: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/789194/phe-priorities-in-health-and-care-2019-2020-letter.pdf

Public Health England (PHE) is the national agency charged with protecting and improving the nation’s health. It is an executive agency of the Department of Health and Social Care (DHSC) and acts on behalf of the Secretary of State to discharge his statutory duties to protect and improve public health in England, and reduce health inequalities, as set out in Sections 2A and 2B of the NHS Act 2006, as inserted by the Health and Social Care Act 2012. These functions and its annual priorities are set out in the remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care (https://www.gov.uk/government/publications/phe-remit-letter-2017-to-2018).

PHE is a direct provider of health protection and health improvement services to patients and the public in England. The successful fulfilment of its remit depends on its ability to process data on the health status of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data it uses it collects directly, but PHE also depends on appropriate and timely access to other sources of health and care data, such as the health status and healthcare provider activity data collected at a national level by NHS Digital.

This Data Sharing Agreement (DSA) supports the statutory remit and core functions of PHE by setting out the justifications and legal basis for the sharing of specified data sets by NHS Digital with PHE.

The majority of the datasets shared between the two organisations are detailed in Section 3 of this DSA. Those additional datasets shared which are not contained in Section 3 are detailed below:

National Child Measurement Programme (NCMP) - annual extract of pseudo/anonymised data (from 2006/7 to latest available)

NHS 111 Repeat Caller Service Data Set – daily extract of pseudo/anonymised data (from 2013/14 M05 to latest available)

Personal Social Services Survey of Adult Carers in England (PSS- SACE) - biannual extract of pseudo/anonymised data (from 2009/10 to latest available)

Recorded Dementia Diagnoses (RDD) Data Set - annual extract of pseudo/anonymised data (from 2016/17 to latest available)

Sexual and Reproductive Health Activity Data (SRHAD) - annual extract of pseudo/anonymised data (from 2010/11 to latest available).

Secondary Uses Service (SUS+) - monthly extract of data provided by SUS team within NHS Digital.

To note, the legal basis for PHE to process each of the datasets is General Data Protection Regulation (GDPR) Article 6(1)e (performance of a task carried out in the public interest or in the exercise of official authority vested in the controller; ) and 9(2)h (the management of the Health and Social Care system and services) and 9(2)i (public health interest). NHS Digital's legal basis to disseminate is Health & Social Care Act 2012- 261(1) and 261(2)(b)(ii).

Please note, specific information regarding the purposes for each dissemination from NHS Digital to PHE is detailed later in this section.

For clarity, this DSA does not cover transfers of data to support the direct provision of treatment and care services to patients, such as the use by PHE of the National Health Application and Infrastructure Services (NHAIS) managed by NHS Digital to identify patients eligible to be called for screening for bowel, breast and cervical cancer as part of the NHS Cancer Screening Programmes. It also excludes transfers of data from NHS Digital to PHE for research purposes that have been approved through the Data Access Request Service (DARS) and for which individual data sharing agreements are in place.

PHE commits to ensuring that all its processing of data transferred from NHS Digital complies with: the legal framework for data protection and confidentiality; the updated Caldicott principles; other associated guidance, particularly the ICO Anonymisation Code; and the information governance assurance framework for health and care organisations codified in the Data Security and Protection Toolkit.

This single DSA differs from the standard NHS Digital data release process; there are a number of reasons for this different arrangement:

- This DSA builds on the letter from the Department of Health and Social Care (DHSC) sponsors of PHE and NHS Digital dated 26th January 2015 confirming the Department’s support for the approach set out herein to the exchange of data between the two organisations in order to support the fulfilment of their respective remits and functions. It also builds on previous Memorandum of Understanding on Data Exchange agreements between PHE and NHS Digital covering the years 2015/16, 2016/17, 2017/18 and the first half of 2018/19.

- This DSA recognises the remit and functions of NHS Digital as set out in the Health & Social Care Act 2012 and the Care Act 2014, and of PHE as set out in its annual remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care. It also recognises the specific legal gateways provided to PHE under Section 60 of the Health & Social Care Act 2001, as re-enacted by Section 251 of the NHS Act 2006 and the associated Health Service (Control of Patient Information) Regulations 2002, to lawfully process confidential patient information. PHE has also been granted specific exemptions from national data opt outs by the Secretary of State in recognition of its national role in protecting and improving public health.

The DHSC sponsors of PHE and NHS Digital, after seeking advice, have confirmed that Section 60 of the Health and Social Care Act 2001, as re-enacted by Section 251 of the NHS Act 2006 and the associated Health Service (Control of Patient Information) Regulations 2002, provide the legal basis for the exchange of personal confidential data between the two organisations where this supports their remit and functions. Section 251 allows the Secretary of State to make regulations to set aside the common law duty of confidentiality for defined public health and medical purposes.

With specific regard to NHS Digital data which has been anonymised in accordance with the ICO Anonymisation Code prior to transfer to PHE, this data is released using NHS Digital powers provided under the Health & Social Care Act 2012. The controls required to ensure the risks of patients being re-identified are minimised in accordance with the ICO Anonymisation Code are set out within the overarching NHS Digital Data Sharing Framework Contract signed by PHE.

If PHE require a new dataset from NHS Digital or if the data provided from NHS Digital to PHE is used for purposes that are different from those for which the data was provided in the first instance, PHE will seek permission, via an amendment to this DSA, from NHS Digital before using the data.

Specific information regarding the purposes for processing for each dataset disseminated by NHS Digital to PHE is detailed below:

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (National Cancer Register) The CWT contains information on patients urgently referred for suspected cancer or to be treated for cancer in NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration-and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (including referral waiting times), treatment (including treatment waiting times) and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. The CWT data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand the impact of patient routes to diagnosis and treatment pathways on patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk.

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (National Cancer Register) The DIDS data contains information on the diagnostic imaging tests, such as x-rays and MRI scans, carried out on cancer patients treated in NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration- and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (such as DIDS), treatment and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. This linked data is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

Hospital Episodes Statistics (HES)

PURPOSE 1: (PHE National Cancer Register) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these patients. The HES data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 2: (PHE Health protection work programme) The patient identifiable HES data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. HES is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 3: (PHE National Congenital Anomaly & Rare Diseases Register) The patient identifiable HES data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register (https://www.gov.uk/guidance/the-national-congenital- anomaly-and-rare-disease-registration-service-ncardrs). PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these individuals.

Linked HES & Civil Registry Deaths

PURPOSE: (PHE End of life care work programme) The linked HES/Mortality data contains hospital admissions data and mortality records but no information that could be used to directly identify individual patients is provided to PHE. The data is used by PHE to undertake a range of analyses of the health status and care received by individuals at the end of their lives. It is also used to analyse the place of death and determine whether the care provided beforehand was in a hospital, a residential or nursing establishment, or at home.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The PCMD data provided by NHS Digital to PHE details the cause of death but includes no information that could be used to directly identify individual patients. The data is used by PHE to produce a range of statistics on cause-specific death for different demographic groups and geographic areas. These analyses are undertaken on a routine basis by PHE to support its long-term surveillance of non-communicable diseases and to support the work of local public health teams in the discharge of the statutory health improvement duty of Local Authorities.

Secondary Use Service (SUS)

PURPOSE 1: (PHE National Cancer Register) SUS data is essentially an earlier, less ‘clean’ version of the HES data described above (for example, not all duplicate records have been removed) and contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. Data is only provided by NHS Digital for patients with a cancer-related ICD-10 diagnosis code.

Community Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The CSDS provides information on the provision of community-based health and care services to infants, children, young people and adults. It collects data on: patient demographics, such as age, sex, address and GP registration; referrals to community, mental health and social care services; infant and childhood health screening tests and immunisations; special educational needs, child protection and safeguarding assessments; and other information about community-based services. The anonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in the proportions of infants and children reaching developmental milestones, and to analyse the links between child health and educational attainment. It is also used to monitor the use of community-based health and care services, and to produce a range of intelligence outputs to support the commissioning and monitoring of outcomes for community-based services. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities.

Emergency Care Data Set

PURPOSE 1: (PHE Injury prevention and mental health work programmes) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the monitoring of the numbers and trends in patients attending hospital with injuries, particularly violence-related injuries, and because to self-harm. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including delivering the NHS Five Year Forward View for Mental Health and the National Crisis Care Concordat.

PURPOSE 2: (PHE Syndromic surveillance programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its wider duty to protect the nation’s health by providing a national integrated syndromic surveillance system.

Health Survey for England (HSE)

PURPOSE: (PHE Healthy lifestyles work programme) The HSE is a longstanding annual survey of the health and lifestyles of a sample of around 8,000 adults and 2,000 children. The HSE is carried out by NatCen Social Research on behalf of NHS Digital. The HSE data, which has been anonymised, has been published for several years on the UK Data Archive, although additional restrictions have recently been applied to this by NHS Digital to further reduce the risk of any of sample participants being identified. PHE commissioned a boost to the number of children included in the 2015 HSE and requires access to more detailed data on children in households than that ordinarily published by NHS Digital via the UK Data Archive.

Separately, PHE also requires access to a more detailed combined set of HSE data bringing together the responses to the questions on adult gambling behaviours from the 2012, 2015, 2016 and 2018 surveys than is ordinarily published by NHS Digital via the UK Data Archive.

Hospital Episode Statistics (HES)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of a wide range of conditions such as heart disease and stroke, mental health and respiratory disease.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (PHE Mental health work programme) The IAPT data set provides information on access to and outcomes for adults being treated by psychological therapy services across England. It includes patient demographic information and information on referrals to psychological therapy services, mental health assessments and the treatment provided to patients. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence and prevalence of mental health problems such as anxiety disorders and depression. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health, including delivering the NHS Five Year Forward View for Mental Health.

Maternity Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The MSDS provides information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The anonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in maternal health, the use of obstetric and antenatal services, and child health outcomes. The results of these analyses are used to produce a range of health intelligence outputs to support the commissioning and outcomes monitoring of community-based services. They are also used to monitor progress in achieving the Secretary of State’s ambition to halve the number of stillbirths, neonatal and maternal deaths and brain injuries by 2030, and to monitor progress in implementing national initiatives such as the Maternity Transformation Programme.

Mental Health Services Data Set (MHSDS)

PURPOSE: (PHE Mental health work programme) The MHSDS contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals and treatment centres with mental health problems in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of mental health problems such as dementia and depression and anxiety.

National Child Measurement Programme (NCMP)

PURPOSE: (PHE Child health work programme) The NCMP provides information on the height and weight of all children in reception (aged 4-5 years) and year 6 (aged 10-11 years) in schools in England. PHE is the sponsor on behalf of the Secretary of State of the national collection of NCMP data by NHS Digital from all Local Authorities.

National Diabetes Audit

PURPOSE: (PHE Cardiovascular disease work programme) The NDA provides information on the treatment of people with diabetes across England. The audit collects patient demographic information from specialist diabetes services and GP Practices, together with information on the provision of annual care checks, blood glucose levels, achievement of treatment targets, and the health outcomes of people with diabetes. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence, prevalence and treatment of diabetes. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including supporting and evaluating the NHS Diabetes Prevention Programme.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (PHE Syndromic surveillance programme) This data set provides information on calls made to the NHS 111 service by symptomatic patients across England. It includes patient demographic information and information on the symptoms, their severity and the treatment recommended to callers to the service. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its remit to protect the nation’s health by providing a national integrated syndromic surveillance system.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (PHE Mental health work programme) The PSS-SACE provides information on the experiences of persons aged 18 or over who care for another adult, such as the number of hours of care they provide, the support they receive, and their own levels of mental health and wellbeing. No patient identifiable data is collected by NHS Digital in the PSS-SACE. The data, which has been anonymised and provided by NHS Digital to PHE is used to understand more about the types of care being provided, the experiences of carers, their support and training requirements, and the provision of respite opportunities.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (PHE Mental health work programme) The RDD provides information on the number of patients aged 65 and over with a recorded dementia diagnosis. The data is broken down by gender and five year age group for each GP Practice in England. No patient identifiable data is collected by NHS Digital in the RDD Data Set. The data, which has been anonymised and provided by NHS Digital to PHE is used to analyse variations in the numbers and percentages of older people with dementia in different gender and age groups by GP Practice and other geographic areas.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: (PHE Health protection work programme) The SRHAD collects information on the contraception, sexually transmitted infections (STI) and reproductive health advice and care provided to patients attending sexual and reproductive health (SRH) services in England. PHE is the sponsor on behalf of the Secretary of State for the national collection of SRHAD data by NHS Digital from all SRH services. The data, which has been anonymised and provided by NHS Digital to PHE is used to monitor the implementation of key national sexual health policy objectives such as: increasing access to all methods of contraception, including long acting reversible contraception and emergency contraception, and reducing inequalities in access to services; reducing teenage conceptions; and reducing unintended pregnancies.

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (National Cancer Register) The CWT data linked to cancer registration records is used by PHE to analyse trends in the number of urgent referrals for suspected cancer and resulting diagnoses to understand the effectiveness of this referral route for improving patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the Cancer Services tool at https://fingertips.phe.org.uk/profile/cancerservices. The findings derived from the linked CWT and cancer registration data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the NHS England National Cancer Strategy Implementation Plan (https://www.england.nhs.uk/cancer/strategy).

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (PHE National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

Hospital Episodes Statistics (HES)

PURPOSE 1: (PHE National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 2: (PHE Health protection work programme) The findings derived from the linked HES data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections, the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis and the vaccination information at https://www.gov.uk/government/collections/vaccine-uptake.

PURPOSE 3: (PHE National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network (http://www.eurocat-network.eu/). The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

Linked HES & Civil Registry Deaths

PURPOSE: (PHE End of life care work programme) The results of the analyses undertaken by PHE are published in the End of Life Care Profiles at https://fingertips.phe.org.uk/. These profiles are provided by Local Authority and Clinical Commissioning Group and are used to support local health and social care commissioning, for example by providing statistics on the place of death and nursing and care home bed rates.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of different public health profiles at https://fingertips.phe.org.uk/. PHE also undertakes ad hoc analyses of PCMD to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs). These results of these analyses are provided directly to Local Authorities in the form of aggregate statistics and tables.

Secondary Use Service (SUS)

PURPOSE 1: (PHE National Cancer Register) The linked SUS and National Cancer Register data is used by PHE for the specific purpose of producing a set of monthly-updated cancer outcomes metrics on the performance of the NHS in diagnosing and treating cancer patients as soon as possible, such as cancer stage at diagnosis and the percentage of cases diagnosed as an emergency. These metrics, as well as other statistics based on the analysis of data from the cancer register, are published at http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic_specific_work/cancer_outcome_metrics.

Community Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The results of the analyses of CSDS data undertaken by PHE are published in a range of indicators, analytical tools and reports, including the child and maternal health profiles at https://fingertips.phe.org.uk/ and https://www.gov.uk/government/collections/child-and-maternal-health-statistics. This information is used by PHE to inform the development and monitor the effectiveness of national child and maternal health policies and initiatives. PHE also undertakes ad hoc analyses of CDSD data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Emergency Care Data Set

PURPOSE 1: (PHE Injury prevention and mental health work programmes) The results of the analyses of ECDS data are published in a range of indicators, analytical tools and reports, including the crisis care profiles at https://fingertips.phe.org.uk/profile-group/mental-health/profile/crisis-care. The findings derived from ECDS data are further used by PHE to monitor the effectiveness of national policies aimed at preventing injuries and self-harm, such as the National Crisis Care Concordat. This information is also used by local multi-agency partnerships to support the commissioning of violence and self-harm prevention services at a local level.

PURPOSE 2: (PHE Syndromic surveillance programme) The results of the analyses of ECDS data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance report published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on EDCS data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including Emergency Care Data Set data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

Health Survey for England

PURPOSE: (PHE Healthy lifestyles work programme) The data which has been anonymised and provided to PHE is used to estimate excess calorie intakes for children and teenagers. The results of these analyses are providing the evidence for a national calorie reduction campaign led by PHE.

Separately, the anonymised data set on adult gambling behaviours will be used by PHE to analyse gambling prevalence and harms as part of an evidence review commissioned by the Department of Health & Social Care. (The PHE remit letter for 2019/20 from the Parliamentary Under Secretary of State for Public Health and Primary Care specifically states that “During the reporting year PHE will complete and publish evidence reviews on the public health impacts associated with prescription drug dependence and gambling”.)

Hospital Episode Statistics (HES)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Public Health Outcomes Framework at http://www.phoutcomes.info/. The findings derived from HES data are used to inform the development and monitor the effectiveness of national policies and initiatives aimed at protecting and improving public health and reducing health inequalities. The HES data is also analysed by PHE to produce statistics to help Local Authorities fulfil their statutory duty to improve the health of their local population, for example through the production of joint strategic needs assessments and local health and wellbeing strategies.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (PHE Mental health work programme) The results of the analyses of IAPT data are published in a range of indicators, analytical tools and reports, including the common mental health disorders profiling tool at https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from IAPT data is also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with mental health problems, particularly the NHS Five Year Forward View for Mental Health. This information is also used by Local Authorities to support the local commissioning of mental health services.

Maternity Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The results of the analyses of the MSDS data are published by PHE in a range of indicators, analytical tools and reports, including the child health profiles at https://fingertips.phe.org.uk/profile/child-health-profiles. The findings derived from MSDS data are further used by PHE to develop and assess the effectiveness of national policies aimed at improving the health and care services provided to mothers and babies. PHE also undertakes ad hoc analyses of MSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Mental Health Services Data Set (MHSDS)

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Common Mental Health Disorders Profiling Tool at https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from MHSDS are also used by PHE to develop and assess the effectiveness of national policies aimed at improving the lives of people with mental health problems, and are used by Local Authorities to support the commissioning and provision of mental health services at a local level.

National Child Measurement Programme (NCMP)

PURPOSE: (PHE Child health work programme) The data which has been anonymised and provided to PHE is used to analyse variations and trends in the percentages of children who are underweight, normal weight, overweight and obese. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the local authority profiles at http://fingertips.phe.org.uk/profile/national-child-measurement-programme. PHE also use the data to provide statistics to schools on the percentage of children who are an unhealthy weight. The NCMP findings are used by PHE to develop national policies to increase the proportion of children who are normal weight, and are used by Local Authorities to commission and provide services that support families to make healthy lifestyle changes.

National Diabetes Audit

PURPOSE: (PHE Cardiovascular disease work programme) The results of the analyses of NDA data are published in a range of indicators, analytical tools and reports, including the diabetes profiles at https://fingertips.phe.org.uk/profile/diabetes-ft. The findings derived from NDA data are also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with diabetes, particularly supporting and evaluating the NHS Diabetes Prevention Programme. This information is also used by Local Authorities to support the local commissioning of cardiovascular prevention and treatment services.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (PHE Syndromic surveillance programme) The results of the analyses of NHS 111 data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance reports published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on NHS 111 data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including NHS 111 data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are being used to develop further indicators of care-giving across demographic groups and geographic areas for inclusion in the Dementia Profile published at https://fingertips.phe.org.uk/profile-group/mental-health. The results of these analyses are being used to understand more about the care provided to people with dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Dementia Profile and the Common Mental Health Disorders profile at https://fingertips.phe.org.uk/profile-group/mental-health. The findings of these analyses are also used to monitor progress in improving the diagnosis and treatment of dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: PHE Health protection work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the local authority Sexual and Reproductive Health Profiles at https://fingertips.phe.org.uk/profile/sexualhealth. The SRHAD findings are used by PHE to develop and monitor national policies for Sexual Health and HIV, and by Local Authorities to provide SRH services to improve sexual and reproductive health across England.

The PHE remit letter, dated March 2018, sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2018 to March 2019: https://www.gov.uk/government/publications/phe-remit-letter-2018-to-2019

Public Health England (PHE) is the national agency charged with protecting and improving the nation’s health. It is an executive agency of the Department of Health and Social Care (DHSC) and acts on behalf of the Secretary of State to discharge his statutory duties to protect and improve public health in England, and reduce health inequalities, as set out in Sections 2A and 2B of the NHS Act 2006, as inserted by the Health and Social Care Act 2012. These functions and its annual priorities are set out in the remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care (https://www.gov.uk/government/publications/phe-remit-letter-2017-to-2018).

PHE is a direct provider of health protection and health improvement services to patients and the public in England. The successful fulfilment of its remit depends on its ability to process data on the health status of patients and the public, and on the social, economic and environmental factors that determine health. Some of the data it uses it collects directly, but PHE also depends on appropriate and timely access to other sources of health and care data, such as the health status and healthcare provider activity data collected at a national level by NHS Digital.

This Data Sharing Agreement (DSA) supports the statutory remit and core functions of PHE by setting out the justifications and legal basis for the sharing of specified data sets by NHS Digital with PHE.

The majority of the datasets shared between the two organisations are detailed in Section 3 of this DSA. Those additional datasets shared which are not contained in Section 3 are detailed below:

National Child Measurement Programme (NCMP) - annual extract of pseudo/anonymised data (from 2006/7 to latest available)

NHS 111 Repeat Caller Service Data Set – daily extract of pseudo/anonymised data (from 2013/14 M05 to latest available)

Personal Social Services Survey of Adult Carers in England (PSS- SACE) - biannual extract of pseudo/anonymised data (from 2009/10 to latest available)

Recorded Dementia Diagnoses (RDD) Data Set - annual extract of pseudo/anonymised data (from 2016/17 to latest available)

Sexual and Reproductive Health Activity Data (SRHAD) - annual extract of pseudo/anonymised data (from 2010/11 to latest available).

Secondary Uses Service (SUS+) - monthly extract of data provided by SUS team within NHS Digital.

To note, the legal basis for PHE to process each of the datasets is General Data Protection Regulation (GDPR) Article 6(1)e (performance of a task carried out in the public interest or in the exercise of official authority vested in the controller; ) and 9(2)h (the management of the Health and Social Care system and services) and 9(2)i (public health interest). NHS Digital's legal basis to disseminate is Health & Social Care Act 2012- 261(1) and 261(2)(b)(ii).

Please note, specific information regarding the purposes for each dissemination from NHS Digital to PHE is detailed later in this section.

For clarity, this DSA does not cover transfers of data to support the direct provision of treatment and care services to patients, such as the use by PHE of the National Health Application and Infrastructure Services (NHAIS) managed by NHS Digital to identify patients eligible to be called for screening for bowel, breast and cervical cancer as part of the NHS Cancer Screening Programmes. It also excludes transfers of data from NHS Digital to PHE for research purposes that have been approved through the Data Access Request Service (DARS) and for which individual data sharing agreements are in place.

PHE commits to ensuring that all its processing of data transferred from NHS Digital complies with: the legal framework for data protection and confidentiality; the updated Caldicott principles; other associated guidance, particularly the ICO Anonymisation Code; and the information governance assurance framework for health and care organisations codified in the Data Security and Protection Toolkit.

This single DSA differs from the standard NHS Digital data release process; there are a number of reasons for this different arrangement:

- This DSA builds on the letter from the Department of Health and Social Care (DHSC) sponsors of PHE and NHS Digital dated 26th January 2015 confirming the Department’s support for the approach set out herein to the exchange of data between the two organisations in order to support the fulfilment of their respective remits and functions. It also builds on previous Memorandum of Understanding on Data Exchange agreements between PHE and NHS Digital covering the years 2015/16, 2016/17, 2017/18 and the first half of 2018/19.

- This DSA recognises the remit and functions of NHS Digital as set out in the Health & Social Care Act 2012 and the Care Act 2014, and of PHE as set out in its annual remit letter from the Parliamentary Under Secretary of State for Public Health and Primary Care. It also recognises the specific legal gateways provided to PHE under Section 60 of the Health & Social Care Act 2001, as re-enacted by Section 251 of the NHS Act 2006 and the associated Health Service (Control of Patient Information) Regulations 2002, to lawfully process confidential patient information. PHE has also been granted specific exemptions from national data opt outs by the Secretary of State in recognition of its national role in protecting and improving public health.

The DHSC sponsors of PHE and NHS Digital, after seeking advice, have confirmed that Section 60 of the Health and Social Care Act 2001, as re-enacted by Section 251 of the NHS Act 2006 and the associated Health Service (Control of Patient Information) Regulations 2002, provide the legal basis for the exchange of personal confidential data between the two organisations where this supports their remit and functions. Section 251 allows the Secretary of State to make regulations to set aside the common law duty of confidentiality for defined public health and medical purposes.

With specific regard to NHS Digital data which has been anonymised in accordance with the ICO Anonymisation Code prior to transfer to PHE, this data is released using NHS Digital powers provided under the Health & Social Care Act 2012. The controls required to ensure the risks of patients being re-identified are minimised in accordance with the ICO Anonymisation Code are set out within the overarching NHS Digital Data Sharing Framework Contract signed by PHE.

If PHE require a new dataset from NHS Digital or if the data provided from NHS Digital to PHE is used for purposes that are different from those for which the data was provided in the first instance, PHE will seek permission, via an amendment to this DSA, from NHS Digital before using the data.

Specific information regarding the purposes for processing for each dataset disseminated by NHS Digital to PHE is detailed below:

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (National Cancer Register) The CWT contains information on patients urgently referred for suspected cancer or to be treated for cancer in NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration-and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (including referral waiting times), treatment (including treatment waiting times) and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. The CWT data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand the impact of patient routes to diagnosis and treatment pathways on patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk.

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (National Cancer Register) The DIDS data contains information on the diagnostic imaging tests, such as x-rays and MRI scans, carried out on cancer patients treated in NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration- and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (such as DIDS), treatment and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services. This linked data is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

Hospital Episodes Statistics (HES)

PURPOSE 1: (PHE National Cancer Register) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these patients. The HES data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes.

PURPOSE 2: (PHE Health protection work programme) The patient identifiable HES data provided by NHS Digital to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage:

a) antimicrobial resistance

b) healthcare associated infections

c) infectious disease control programmes

d) respiratory diseases

e) vaccine safety

f) vaccine efficacy and cost effectiveness.

PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. HES is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease.

PURPOSE 3: (PHE National Congenital Anomaly & Rare Diseases Register) The patient identifiable HES data provided by NHS Digital to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register (https://www.gov.uk/guidance/the-national-congenital- anomaly-and-rare-disease-registration-service-ncardrs). PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these individuals.

Linked HES & Civil Registry Deaths

PURPOSE: (PHE End of life care work programme) The linked HES/Mortality data contains hospital admissions data and mortality records but no information that could be used to directly identify individual patients is provided to PHE. The data is used by PHE to undertake a range of analyses of the health status and care received by individuals at the end of their lives. It is also used to analyse the place of death and determine whether the care provided beforehand was in a hospital, a residential or nursing establishment, or at home.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The PCMD data provided by NHS Digital to PHE details the cause of death but includes no information that could be used to directly identify individual patients. The data is used by PHE to produce a range of statistics on cause-specific death for different demographic groups and geographic areas. These analyses are undertaken on a routine basis by PHE to support its long-term surveillance of non-communicable diseases and to support the work of local public health teams in the discharge of the statutory health improvement duty of Local Authorities.

Secondary Use Service (SUS)

PURPOSE: (PHE National Cancer Register) SUS data is essentially an earlier, less ‘clean’ version of the HES data described above (for example, not all duplicate records have been removed) and contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHS Digital to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. Data is only provided by NHS Digital for patients with a cancer-related ICD-10 diagnosis code.

Community Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The CSDS provides information on the provision of community-based health and care services to infants, children, young people and adults. It collects data on: patient demographics, such as age, sex, address and GP registration; referrals to community, mental health and social care services; infant and childhood health screening tests and immunisations; special educational needs, child protection and safeguarding assessments; and other information about community-based services. The anonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in the proportions of infants and children reaching developmental milestones, and to analyse the links between child health and educational attainment. It is also used to monitor the use of community-based health and care services, and to produce a range of intelligence outputs to support the commissioning and monitoring of outcomes for community-based services. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities.

Emergency Care Data Set

PURPOSE 1: (PHE Injury prevention and mental health work programmes) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the monitoring of the numbers and trends in patients attending hospital with injuries, particularly violence-related injuries, and because to self-harm. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including delivering the NHS Five Year Forward View for Mental Health and the National Crisis Care Concordat.

PURPOSE 2: (PHE Syndromic surveillance programme) The ECDS provides information on the numbers of patients attending NHS Emergency Departments across England, their diagnoses and the treatments they receive. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its wider duty to protect the nation’s health by providing a national integrated syndromic surveillance system.

Health Survey for England

PURPOSE: (PHE Healthy lifestyles work programme) The HSE is a longstanding annual survey of the health and lifestyles of a sample of around 8,000 adults and 2,000 children. The HSE is carried out by NatCen Social Research on behalf of NHS Digital. The HSE data, which has been anonymised, has been published for several years on the UK Data Archive, although additional restrictions have recently been applied to this by NHS Digital to further reduce the risk of any of sample participants being identified. PHE commissioned a boost to the number of children included in the 2015 HSE and requires access to more detailed data on children in households than that ordinarily published by NHS Digital via the UK Data Archive.

Hospital Episode Statistics (HES)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of a wide range of conditions such as heart disease and stroke, mental health and respiratory disease.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (PHE Mental health work programme) The IAPT data set provides information on access to and outcomes for adults being treated by psychological therapy services across England. It includes patient demographic information and information on referrals to psychological therapy services, mental health assessments and the treatment provided to patients. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence and prevalence of mental health problems such as anxiety disorders and depression. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health, including delivering the NHS Five Year Forward View for Mental Health.

Maternity Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The MSDS provides information on the health and care of mothers and babies during and after pregnancy. It collects information at each stage of the maternity care pathway, including hospital appointments and admissions, screening tests and antenatal care service provision. The anonymised data provided by NHS Digital to PHE is used to monitor numbers and trends in maternal health, the use of obstetric and antenatal services, and child health outcomes. The results of these analyses are used to produce a range of health intelligence outputs to support the commissioning and outcomes monitoring of community-based services. They are also used to monitor progress in achieving the Secretary of State’s ambition to halve the number of stillbirths, neonatal and maternal deaths and brain injuries by 2030, and to monitor progress in implementing national initiatives such as the Maternity Transformation Programme.

Mental Health Services Data Set (MHSDS)

PURPOSE: (PHE Mental health work programme) The MHSDS contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals and treatment centres with mental health problems in England. The data, which has been anonymised and provided by NHS Digital to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of mental health problems such as dementia and depression and anxiety.

National Child Measurement Programme (NCMP)

PURPOSE: (PHE Child health work programme) The NCMP provides information on the height and weight of all children in reception (aged 4-5 years) and year 6 (aged 10-11 years) in schools in England. PHE is the sponsor on behalf of the Secretary of State of the national collection of NCMP data by NHS Digital from all Local Authorities.

National Diabetes Audit

PURPOSE: (PHE Cardiovascular disease work programme) The NDA provides information on the treatment of people with diabetes across England. The audit collects patient demographic information from specialist diabetes services and GP Practices, together with information on the provision of annual care checks, blood glucose levels, achievement of treatment targets, and the health outcomes of people with diabetes. The anonymised data provided by NHS Digital to PHE is used to produce a range of statistics and monitor trends in the incidence, prevalence and treatment of diabetes. This monitoring forms a key component of PHE’s remit to support the NHS and Local Authorities in improving public health and reducing health inequalities, including supporting and evaluating the NHS Diabetes Prevention Programme.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (PHE Syndromic surveillance programme) This data set provides information on calls made to the NHS 111 service by symptomatic patients across England. It includes patient demographic information and information on the symptoms, their severity and the treatment recommended to callers to the service. The anonymised data provided by NHS Digital to PHE is used for the daily monitoring of the incidence of infectious diseases and other threats to public health, such as injuries, extreme weather events and air pollution. This monitoring forms a key component of PHE’s syndromic surveillance work programme and supports its remit to protect the nation’s health by providing a national integrated syndromic surveillance system.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (PHE Mental health work programme) The PSS-SACE provides information on the experiences of persons aged 18 or over who care for another adult, such as the number of hours of care they provide, the support they receive, and their own levels of mental health and wellbeing. No patient identifiable data is collected by NHS Digital in the PSS-SACE. The data, which has been anonymised and provided by NHS Digital to PHE is used to understand more about the types of care being provided, the experiences of carers, their support and training requirements, and the provision of respite opportunities.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (PHE Mental health work programme) The RDD provides information on the number of patients aged 65 and over with a recorded dementia diagnosis. The data is broken down by gender and five year age group for each GP Practice in England. No patient identifiable data is collected by NHS Digital in the RDD Data Set. The data, which has been anonymised and provided by NHS Digital to PHE is used to analyse variations in the numbers and percentages of older people with dementia in different gender and age groups by GP Practice and other geographic areas.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: (PHE Health protection work programme) The SRHAD collects information on the contraception, sexually transmitted infections (STI) and reproductive health advice and care provided to patients attending sexual and reproductive health (SRH) services in England. PHE is the sponsor on behalf of the Secretary of State for the national collection of SRHAD data by NHS Digital from all SRH services. The data, which has been anonymised and provided by NHS Digital to PHE is used to monitor the implementation of key national sexual health policy objectives such as: increasing access to all methods of contraception, including long acting reversible contraception and emergency contraception, and reducing inequalities in access to services; reducing teenage conceptions; and reducing unintended pregnancies.

National Cancer Waiting Times Monitoring Data Set (CWT)

PURPOSE: (National Cancer Register) The CWT data linked to cancer registration records is used by PHE to analyse trends in the number of urgent referrals for suspected cancer and resulting diagnoses to understand the effectiveness of this referral route for improving patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the Cancer Services tool at https://fingertips.phe.org.uk/profile/cancerservices. The findings derived from the linked CWT and cancer registration data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the NHS England National Cancer Strategy Implementation Plan (https://www.england.nhs.uk/cancer/strategy).

Diagnostic Imaging Dataset (DIDs)

PURPOSE: (PHE National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

Hospital Episodes Statistics (HES)

PURPOSE 1: (PHE National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.

PURPOSE 2: (PHE Health protection work programme) The findings derived from the linked HES data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections, the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis and the vaccination information at https://www.gov.uk/government/collections/vaccine-uptake.

PURPOSE 3: (PHE National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network (http://www.eurocat-network.eu/). The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.

Linked HES & Civil Registry Deaths

PURPOSE: (PHE End of life care work programme) The results of the analyses undertaken by PHE are published in the End of Life Care Profiles at https://fingertips.phe.org.uk/. These profiles are provided by Local Authority and Clinical Commissioning Group and are used to support local health and social care commissioning, for example by providing statistics on the place of death and nursing and care home bed rates.

Primary Care Mortality Data Set (PCMD)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of different public health profiles at https://fingertips.phe.org.uk/. PHE also undertakes ad hoc analyses of PCMD to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs). These results of these analyses are provided directly to Local Authorities in the form of aggregate statistics and tables.

Secondary Use Service (SUS)

PURPOSE: (PHE National Cancer Register) The linked SUS and National Cancer Register data is used by PHE for the specific purpose of producing a set of monthly-updated cancer outcomes metrics on the performance of the NHS in diagnosing and treating cancer patients as soon as possible, such as cancer stage at diagnosis and the percentage of cases diagnosed as an emergency. These metrics, as well as other statistics based on the analysis of data from the cancer register, are published at http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic_specific_work/cancer_outcome_metrics.

Community Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The results of the analyses of CSDS data undertaken by PHE are published in a range of indicators, analytical tools and reports, including the child and maternal health profiles at https://fingertips.phe.org.uk/ and https://www.gov.uk/government/collections/child-and-maternal-health-statistics. This information is used by PHE to inform the development and monitor the effectiveness of national child and maternal health policies and initiatives. PHE also undertakes ad hoc analyses of CDSD data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Emergency Care Data Set

PURPOSE 1: (PHE Injury prevention and mental health work programmes) The results of the analyses of ECDS data are published in a range of indicators, analytical tools and reports, including the crisis care profiles at https://fingertips.phe.org.uk/profile-group/mental-health/profile/crisis-care. The findings derived from ECDS data are further used by PHE to monitor the effectiveness of national policies aimed at preventing injuries and self-harm, such as the National Crisis Care Concordat. This information is also used by local multi-agency partnerships to support the commissioning of violence and self-harm prevention services at a local level.

PURPOSE 2: (PHE Syndromic surveillance programme) The results of the analyses of ECDS data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance report published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on EDCS data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including Emergency Care Data Set data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

Health Survey for England

PURPOSE: (PHE Healthy lifestyles work programme) The data which has been anonymised and provided to PHE is used to estimate excess calorie intakes for children and teenagers. The results of these analyses are providing the evidence for a national calorie reduction campaign led by PHE.

Hospital Episode Statistics (HES)

PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Public Health Outcomes Framework at http://www.phoutcomes.info/. The findings derived from HES data are used to inform the development and monitor the effectiveness of national policies and initiatives aimed at protecting and improving public health and reducing health inequalities. The HES data is also analysed by PHE to produce statistics to help Local Authorities fulfil their statutory duty to improve the health of their local population, for example through the production of joint strategic needs assessments and local health and wellbeing strategies.

Increasing Access to Psychological Services (IAPT) Data Set

PURPOSE: (PHE Mental health work programme) The results of the analyses of IAPT data are published in a range of indicators, analytical tools and reports, including the common mental health disorders profiling tool at https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from IAPT data is also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with mental health problems, particularly the NHS Five Year Forward View for Mental Health. This information is also used by Local Authorities to support the local commissioning of mental health services.

Maternity Services Data Set

PURPOSE: (PHE Child and maternal health work programme) The results of the analyses of the MSDS data are published by PHE in a range of indicators, analytical tools and reports, including the child health profiles at https://fingertips.phe.org.uk/profile/child-health-profiles. The findings derived from MSDS data are further used by PHE to develop and assess the effectiveness of national policies aimed at improving the health and care services provided to mothers and babies. PHE also undertakes ad hoc analyses of MSDS data to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs).

Mental Health Services Data Set (MHSDS)

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Common Mental Health Disorders Profiling Tool at https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from MHSDS are also used by PHE to develop and assess the effectiveness of national policies aimed at improving the lives of people with mental health problems, and are used by Local Authorities to support the commissioning and provision of mental health services at a local level.

National Child Measurement Programme (NCMP)

PURPOSE: (PHE Child health work programme) The data which has been anonymised and provided to PHE is used to analyse variations and trends in the percentages of children who are underweight, normal weight, overweight and obese. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the local authority profiles at http://fingertips.phe.org.uk/profile/national-child-measurement-programme. PHE also use the data to provide statistics to schools on the percentage of children who are an unhealthy weight. The NCMP findings are used by PHE to develop national policies to increase the proportion of children who are normal weight, and are used by Local Authorities to commission and provide services that support families to make healthy lifestyle changes.

National Diabetes Audit

PURPOSE: (PHE Cardiovascular disease work programme) The results of the analyses of NDA data are published in a range of indicators, analytical tools and reports, including the diabetes profiles at https://fingertips.phe.org.uk/profile/diabetes-ft. The findings derived from NDA data are also used by PHE to monitor the effectiveness of national policies aimed at improving the lives of people with diabetes, particularly supporting and evaluating the NHS Diabetes Prevention Programme. This information is also used by Local Authorities to support the local commissioning of cardiovascular prevention and treatment services.

NHS 111 Repeat Caller Service Data Set

PURPOSE: (PHE Syndromic surveillance programme) The results of the analyses of NHS 111 data undertaken by PHE are used in the following ways: to support the work of the daily syndromic surveillance service, which provides a real-time health protection threat monitoring function within PHE; produce the weekly surveillance reports published at https://www.gov.uk/government/collections/syndromic-surveillance-systems-and-analyses; and to support the real-time management of public health incidents, such as infectious disease outbreaks, heatwaves and floods. The outputs based on NHS 111 data are published as aggregate counts and rates, with small numbers suppressed in accordance with the NHS Digital HES analysis guide. The information processed by the PHE syndromic surveillance team, including NHS 111 data, is also used to generate ad hoc surveillance outputs produced to support the management and sharing of lessons from public health incidents.

Personal Social Services Survey of Adult Carers in England (PSS- SACE)

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are being used to develop further indicators of care-giving across demographic groups and geographic areas for inclusion in the Dementia Profile published at https://fingertips.phe.org.uk/profile-group/mental-health. The results of these analyses are being used to understand more about the care provided to people with dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Recorded Dementia Diagnoses (RDD) Data Set

PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Dementia Profile and the Common Mental Health Disorders profile at https://fingertips.phe.org.uk/profile-group/mental-health. The findings of these analyses are also used to monitor progress in improving the diagnosis and treatment of dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health.

Sexual and Reproductive Health Activity Data (SRHAD)

PURPOSE: PHE Health protection work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the local authority Sexual and Reproductive Health Profiles at https://fingertips.phe.org.uk/profile/sexualhealth. The SRHAD findings are used by PHE to develop and monitor national policies for Sexual Health and HIV, and by Local Authorities to provide SRH services to improve sexual and reproductive health across England.

The PHE remit letter, dated March 2018, sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2018 to March 2019: https://www.gov.uk/government/publications/phe-remit-letter-2018-to-2019