National Respiratory Audit Programme (NRAP): Outcomes of patients included in the COPD clinical audit

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Objective for processing

[1 paragraph unchanged] The aim of this Data Sharing Agreement is to link data collected in the COPD Audit to hospital readmissions Data and mortality Data, data and use the linked data to illustrate whether the healthcare provided to patients admitted to hospital with [7 words unchanged] or bad outcomes. The overarching aims of the COPD audit are to: [31 paragraphs unchanged]

Expected output

[1 paragraph unchanged] • A national outcomes report which will contain national recommendations for providers, commissioners/health boards/Sustainability Transformation Partnerships (STPs), as well as primary care care. This report for the cohort period of 01 April 2021 to 31 March 2023 is due for publication in October 2025. The report will provide data on 30- and 90-day mortality and readmissions for patients in England and Wales for this period. [12 paragraphs unchanged]

Benefits reported

In 2023, patient outcomes were published for the cohorts of 2018 to 2020. This was used to inform recommendations around structural resourcing of services, post the COVID-19 pandemic. In January 2023, Drawing Breath (01 April 21 to 31 March 22), state of the nation combined clinical audit report was published, reporting on the key findings from data collected on 63,409 admissions of COPD exacerbations in adult hospital services. In June 2024, Breathing Well (01 April 22 to 31 March 23), state of the nation combined clinical audit report was published, reporting on key findings from data collected on 66,406 admissions of COPD exacerbations in adult hospital services. [10 paragraphs unchanged] Previous recommendations have advanced understanding of regional and national trends in health [20 words unchanged] presented based on regions and nations. This report can be found here: https://www.rcplondon.ac.uk/file/44391/download https://www.rcp.ac.uk/improving-care/resources/clinical-outcomes-summary-report-201820/ [1 paragraph unchanged]

Changed only in punctuation, spacing or capitalisation: Processing activities.

Unchanged: Expected measurable benefits.

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Datasets: + Civil Registrations of Death · − HES-ID to MPS-ID HES Admitted Patient Care; − HES:Civil Registration (Deaths) bridge

Objective for processing

This application relates to the secondary care Chronic Obstructive Pulmonary Disease (COPD) clinical audit element of the National Asthma and COPD Audit Programme which has been commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP). The audit programme, including this secondary care audit, supports the Department of Health’s (DH) aims to improve the quality of services for people with COPD, measuring and reporting the delivery of care as defined by guidance standards. It is included in the list of national audits for inclusion in Trusts’ Quality Accounts and is also included in the NHS Wales Clinical Audit & Outcome Review Plan. The processing for which approval is sought is to allow the analysis and reporting to achieve this aim. The Healthcare Quality Improvement Partnership (HQIP) and NHS England require access to NHS England Data for the purpose of the National Respiratory Audit Programme (NRAP) – Secondary Care Chronic Obstructive Pulmonary Disease (COPD) Patients. The COPD audit reports on care processes provided in the acute hospital setting in England and Wales. There are four organisations collaborating on this audit: The aim of this Data Sharing Agreement is to link data collected in the COPD Audit to hospital readmissions Data and mortality Data, to illustrate whether the healthcare provided to patients admitted to hospital with a COPD exacerbation has resulted in good or bad outcomes. The overarching aims of the COPD audit are to: - HQIP and NHS England are the joint data controller for this audit programme, determining the purpose and manner to which the data is used. • Identify variability and deficiencies in the care received by adults admitted to hospital with exacerbations of COPD - Imperial College London, who are the primary data processor, combining the requested data with the COPD audit data and processing it for data analysis once this has been done. • Support improvement by providing timely and relevant data/ feedback to clinicians and local hospital teams - The Royal College of Physicians (RCP), who are the secondary data processor, and will help advise Imperial College London on clinical elements of the methodology and will interpret the findings. • Improve the basic standards of care for people admitted to hospital with exacerbations of COPD In addition to the information collected by hospitals, an element of the audit’s design (and included explicitly in the section 251 approval) requires the linkage of audit data to Hospital Episode Statistics (HES) and Mortality data. This is used for the following reasons: • Support improvement of mortality and readmissions rates for people with COPD in England and Wales HES data: The following NHS England Data will be accessed: - To provide reliable data on outcomes, namely readmission rates, for the audit cohort; a proxy of the quality of care and discharge processes received. • Hospital Episode Statistics Admitted Patient Care – necessary to analyse rates and causes of readmissions with 30 and 90 days of patient discharge from hospital; length of stay; and associations between likelihood of mortality and readmission with comorbidities - To add to the richness of the data set, whilst not increasing workload on local sites. More specifically, co-morbidity and parity of esteem information will be sourced from HES. • Civil Registration (Deaths) – necessary to analyse rates and causes of mortality within 30 and 90 days of patient arrival at hospital Mortality data: The level of the Data will be pseudonymised. - To ensure audit-based calculations of inpatient mortality are correct and to allow derivation of longer-term (30 and 90 day) mortality data (i.e. outcome data). This will also function as a surrogate for system care, a vitally important consideration for Health Boards in Wales, Sustainability and Transformation Partnerships (STPs) (soon to be Integrated Care Systems) and Accountable Care Partnerships (ACPs). The Data will be minimised as follows: Mortality and readmissions are increasingly recognised as being important proxies of good inpatient care. Therefore, tracking patients beyond their hospital stay is essential in order to link care processes with these two outcomes and, subsequently, to influence improvements in patient care. Care processes will not be linked to other outcomes at this stage. • Limited to a study cohort of COPD patients identified within the audit GDPR LEGAL BASIS HQIP has commissioned the Royal College of Physicians (RCP) to undertake the work. NHSE are the funders of the work for the English aspect of the audit. HQIP and NHSE are the controllers as the organisations responsible for ensuring that the Data will only be processed for the purpose described above. NHS England is responsible for determining which projects/topics are included as part of the NCAPOP. HQIP, as commissioner of the NCAPOP, is responsible for project specification development, procurement and extension activities, contract management and authorising data sharing requests. NHS England, as a funder of the NCAPOP, participates within specification development, procurement and project extension activities and authorises the publication of project outputs. NHS England is responsible for determining which projects/topics are included as part of the NCAPOP. HQIP, as commissioner of the NCAPOP, is responsible for project specification development, procurement and extension activities, contract management and authorising data sharing requests. NHS England, as a funder of the NCAPOP, participates within specification development, procurement and project extension activities and authorises the publication of project outputs. Digital Health and Care Wales (DHCW) are the funders and joint controllers of the work for the Welsh aspect of the audit. This is reflected under DARS-NIC-727537-C3V4G. All NHS England Data for Welsh health service users is covered under DARS-NIC-727537-C3V4G, however the Data is disseminated under DARS-NIC-349273-T3L4K. NHS England - The GDPR legal basis for the use of data in this application is Article 6 (1)(e) "processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller." and Article 9 (2)(h) "Processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3." The lawful basis for processing personal data under the UK GDPR is: The data are requested for reasons of management of Health and Social Care Systems and Services - meeting the conditions in the DPA 2018 Schedule 1 Part 1, schedule 2(2)(f). The conditions and safeguards in DPA 2018 section 11(1) – stating that “For the purposes of Article 9(2)(h) of the GDPR (processing for health or social care purposes etc), the circumstances in which the processing of personal data is carried out subject to the conditions and safeguards referred to in Article 9(3) of the GDPR (obligation of secrecy) include circumstances in which it is carried out by another person who in the circumstances owes a duty of confidentiality under an enactment or rule of law.” Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller. NHS England meets this condition because NHS England is subject to a duty to promote a comprehensive health service, designed to secure the improvement in the physical and mental health of people in England and the prevention, diagnoses and treatment of illness, which it discharges alongside the Secretary of State, except for that part of the health service that is delivered in pursuit of public health functions of the Secretary of State or local authorities. (NHS Act 2006, S1H (2)) and NHS England assists Secretary of State in providing health services and exercising public health functions. Section 12 empowers the Secretary of State to make arrangements with any person or body to provide, or assist in providing, anything that the Secretary of State has a duty or power to provide, or arrange for the provision of, under section 2A or 2B or Schedule 1 of the 2006 Act, as amended (the Secretary of State’s duty as to the protection of public health and the improvement of public health respectively). (NHS Act 2006, S12, HSCA 2012, s22) HQIP’s lawful basis for processing special category data under the UK GDPR is: HQIP - The GDPR legal basis for the use of data in this application is Article 6 (1)(e) "processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller. " 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 or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy. and Article 9 (2)(i) "processing is necessary for reasons of public interest in the area of public health...". NHSE’s lawful basis for processing special category data under the UK GDPR is: The data is required for audit purposes - for improvement and ensuring high standards and quality/safe care. Recital 54 of GDPR explains that: The processing of special categories of personal data may be necessary for reasons of public interest in the areas of public health without consent of the data subject. Such processing should be subject to suitable and specific measures so as to protect the rights and freedoms of natural persons. In that context, ‘public health’ should be interpreted as defined in Regulation (EC) No 1338/2008 of the European Parliament and of the Council, namely all elements related to health, namely health status, including morbidity and disability, the determinants having an effect on that health status, health care needs, resources allocated to health care, the provision of, and universal access to, health care as well as health care expenditure and financing, and the causes of mortality. Such processing of data concerning health for reasons of public interest should not result in personal data being processed for other purposes by third parties such as employers or insurance and banking companies. HQIP have justified the Legal basis of 9 (2) (i) as the COPD audit aims to drive improvements in the quality and safety of care and to improve outcomes for COPD patients. Article 9(2)(h) - processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3. The processing is in the public interest because the audits aim to drive improvements in the quality and safety of care and to improve outcomes for all patients. The Royal College of Physicians (RCP) and Imperial College London are processors acting under the instructions of HQIP and NHSE. Imperial College London receive the Data from NHSE and combine it with the COPD audit data to undertake the required analyses of individual patient outcomes, and generate aggregated unsuppressed Data for the RCP. The RCP incorporate the analysed outputs into reports and interpret the findings. Once the national audit report has been drafted it is reviewed by representatives of other organisations who are members of NRAP governance groups (NRAP Board members and NRAP COPD advisory group members). Group members represent: • NHS professionals (ie consultants, respiratory nurses) • Charities (ie British Thoracic Society, Asthma + Lung UK) • Other stakeholder organisations/ professional bodies (e.g. National Clinical Directors, and improvement bodies such as Getting It Right First Time) • Patient representatives who have COPD NRAP will co-produce a comprehensive patient and public involvement and engagement (PPIE) strategy. Asthma + Lung UK have been subcontracted to coordinate the recruitment, retention and engagement of patients in audit programme activities. NRAP will continue to work with these patients to identify key priorities for improvement, and ensure the aspects of care which are important to them are reported on. An infographic providing a concise, easy to read overview of the key findings will be produced so that patients and the general public can understand its messages. Patients are represented at four levels of the NRAP governance structure, including: • NRAP Board – one adult with COPD, one adult with asthma, one/two children and young people with asthma and one carer of a child/young person with asthma. • COPD Advisory Group – one adult with COPD and another person with COPD with experience of pulmonary rehabilitation. • Asthma Advisory Group – one adult with asthma, two children and young people with asthma, and one carer of a child/young person with asthma. • Patient Panel – 15 adults with asthma, ten children and young people with asthma and two/three carers.

Processing activities

Under version 7 of this Data Sharing Agreement (DSA), no further data is being requested. Existing data will be retained for further processing. Crown Informatics will transfer data to NHS England. The data will consist of identifying details (specifically NHS Number, Date of Birth, Postcode, Gender and a unique person ID) for the cohort to be linked with NHS England Data. Under previous versions of this DSA, the following applied: NHS England will provide the relevant records from the HES Admitted Patient Care and Civil Registrations (Deaths) datasets to Imperial College London. The Data will contain no direct identifying data items but will contain a unique person ID which can be used to link the Data with other record level data already held by the recipient. METHOD: Imperial College London will produce small numbers unsuppressed Data summarising relevant readmissions, comorbidities and mortality Data, and securely transfer this to the Royal College of Physicians (RCP). 1. Crown Informatics Ltd send - on an annual basis - specific patient identifiers (NHS Number, Postcode, Date of Birth) plus a Study ID to NHS Digital via a Secure Electronic File Transfer System (SEFT). The Data will be stored on servers at Imperial College London and RCP. 2. NHS Digital links cohort to HES APC and Civil Registrations (Deaths) data, The Data will be accessed onsite at the premises of Imperial College London and RCP, and by authorised personnel from these organisations via remote access. The Data will remain on the servers at Imperial College London and RCP at all times. 3. NHS Digital will pseudonymise the data by removing any patient identifiable information: Remote processing will only be through a secure electronic network and organisational controls prohibit personnel from downloading or copying data to local devices. - Study ID to remain. Remote processing will be subject to the following being in place: - Change Date of Birth to Age at Arrival at Hospital. • Multifactor authentication (MFA); - Postcode to be replaced with LSOA. • Access controls granting users the minimum level of access required; 4. NHS Digital will then send the pseudonymised record level data straight to Imperial College London via a Secure Electronic File Transfer System (SEFT). • Secure connections (e.g., VPNs or secure protocols) to protect data during remote access; NHS Digital will provide Imperial College London with pseudonymised: • Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls. - HES for the cohort with a unique COPD audit identifier. All remote access is undertaken within the scope of the relevant organisations’ DSPT (or other security arrangements as per this Data Sharing Agreement (DSA)). - Mortality data for the cohort with a unique COPD audit identifier. The Data will not leave England/Wales at any time. Access is restricted to employees of Imperial College London and RCP. The HES data will include date of admission, hospital of admission, date of discharge, discharge method, discharge destination, episode data (episode order, start, end, diagnoses), and all diagnosis data for all patients in the cohort in the defined time period. All personnel accessing the Data have been appropriately trained in data protection and confidentiality. Imperial College London will receive the patient level pseudonymised data from NHS Digital and combine with COPD audit data. They will then carry out analysis relating to outcomes (readmission and mortality). The Data will be linked at person record level with the existing clinical audit dataset obtained from Crown Informatics. - Imperial College London: Data is stored on a password protected computer at on an encrypted internal hard drive which sits in a locked room. The datasheets themselves are also password protected individually as well as the computer. Imperial College London and the RCP do not hold any patient identifiable information. Imperial College London and the RCP have no requirement and will make no attempt to reidentify individuals. RCP only receive pseudonymised service level aggregated data. The following analyses will be undertaken by Imperial College London: - Royal College of Physicians: Data is held and regularly backed up on an internal secure server. Servers are certified to ISO 7001. This ensures that despite a network failure access can still be gained to key information. • The proportion of patients who died within 30 days of index admission and 90 days of index admission If remote working (COVID/social distancing measures), access is via individual staff machines and their associated servers at the RCP through a Remote Desktop Gateway. • The reasons for cause of death within the 30 days of index admission and 90 days of index admission Imperial College London will analyse the data for audit purposes: • The proportion of patients readmitted within 30 days of index discharge and 90 days of index discharge 1. To derive outcomes (readmissions at 30 and 90 days; inpatient mortality and mortality at 30 and 90 days) for the cohort of patients included in the national COPD audit. • The reasons for cause of readmission within 30 days of index discharge and 90 days of index admission 2. To add to the richness of the original data set, by analysing data on co-morbidities and parity of esteem provided by HES. • Whether patients with comorbidities were more likely to be readmitted within 30/90 days of index discharge and more likely to die within 30/90 days of index admission Imperial College London are commissioned to perform complex statistical analysis for the purposes of national clinical audit reporting. To this end they require HES linked data (for case ascertainment and derivation of readmission rates) and Mortality linked data (for mortality analysis). • Additional sub-analyses on whether the provision of elements of care during the index admissions had an effect of readmission and/or mortality at 30 and/or 90 days. The Royal College of Physicians (RCP) of London will help advise Imperial College London on clinical elements of the methodology and will interpret the findings. RCP only receive pseudonymised service level aggregated data. The RCP will translate and contextualise the unsuppressed Data provided by Imperial College London into suppressed outputs for the national outcomes report. The RCP will also use the unsuppressed Data to support hospital teams with healthcare improvement and with queries relating to the hospital-level reports. All individuals with access to record-level data are employed by the RCP or Imperial College London. No record-level data falling under this agreement will be shared with any third party. All outputs will be aggregated with small numbers suppressed, in line with the HES Analysis Guide. Patient Episode Database for Wales (PEDW) data covering patients attending hospital in Wales will be requested separately by the Royal College of Physicians from Data Health and Care Wales (DHCW). No record level data from NHS Digital will be shared with DHCW under this agreement or vice versa. NHS Digital reminds all organisations party to this agreement of the need to comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data). HES DISCLOSURE CONTROL / SMALL NUMBER SUPPRESSION In order to protect patient confidentiality, when presenting results calculated from HES record level data, outputs will contain only aggregate level data with small numbers suppressed in line with HES Analysis Guide. When publishing HES data, you must make sure that: · cell values from 1 to 7 are suppressed at a local level to prevent possible identification of individuals from small counts within the table. · Zeros (0) do not need to be suppressed. · All other counts will be rounded to the nearest 5. Data will not be made available to any third parties other than those specified except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guide.

Expected output

This data sharing agreement covers the request from Royal College of Physicians of London for an annual data linkage in order to produce annual outcomes reports, detailing the medium-term outcomes (mortality and readmissions) of the cohort included in the national COPD audit. The expected outputs of the processing will be: The National Asthma and COPD Audit Programme (NACAP) obtained the last batch of linked data from NHS Digital in December 2021 (for the cohort discharged from hospital between October 2018 and September 2019). A further cohort is due between January and March 2022 (for the cohort discharged from hospital between October 2019 and February 2020). This is the last cohort to be requested under version 6 of this agreement. Analysis will be conducted upon receipt of the second cohort (October 2019 – February 2020) and the national report drafted and sent to HQIP (as commissioners) and NHSE (as funders) for approval. Site-level results will be released to local clinicians on the same day upon request (i.e. the day of national report release) and then publicly via data.gov.uk 10 working days post publication of the report. Peer reviewed publications will follow. • A national outcomes report which will contain national recommendations for providers, commissioners/health boards/Sustainability Transformation Partnerships (STPs), as well as primary care NACAP are now seeking an extension to this agreement in order to continue to hold the outcomes data requested and or received by NHS Digital to date. Due to the delay encountered during 2021 with receiving requested data (under agreement version 6) it has not been possible to report as originally planned. There is therefore a need to hold data for longer than originally envisaged. Linkage for their next cohorts (i.e. those discharged from hospital after April 2021) will be requested under an amendment/renewal of data following confirmation that NACAPs agreement has been extended. This will be in approximately Autumn 2022 so that work can commence on the same series of outputs (national report will be published approximately 6 months post linked data being received). It is important to publish annual reports, so that change and improvement can be tracked and support teams to improve the care they provide for patients. • Presentations at appropriate conferences with audiences made up of respiratory professionals in the medical field, such as the British Thoracic Society (BTS) Meetings; Primary Care Respiratory Society UK (PCRSUK) Annual Conference; Royal College of Paediatrics and Child Health (RCPCH) Conference; and European Respiratory Society Congress Publications and outputs using the data to date: The outputs will not contain NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived. To date the RCP has received two sets of data pertaining to this application: The outputs will be communicated to relevant recipients through the following dissemination channels: 1) The first was released by NHS Digital in summer 2016 and pertained to a cohort of COPD audit patients admitted to hospital in a three-month period in 2014. With this the RCP published a national report based on the linked secondary care/outcome (HES/Mortality) data in early 2017. The report can be accessed at: https://www.rcplondon.ac.uk/projects/outputs/copd-who-cares-when-it-matters-most-outcomes-report-2014. The report was well received; coverage was provided by the BMJ, Nursing Times, Talk Radio and over 100 regional newspapers. • National outcomes report available via these websites: Local (i.e. hospital level) outcomes reports were also released in 2017. These are not available in the public domain, but were sent directly to audit leads at participating hospitals. These reports provided local data bench-marked against national data, in order for a comprehensive understanding of the quality of care delivered locally to be obtained. o RCP: www.rcp.ac.uk/nrap The RCP is still in the process of producing the additional outputs detailed in the original application, namely publications in peer-reviewed journals. Please note, publications cannot be authored or published until after the national audit report has been released. Consequently, they do not normally occur until at least 3 years’ worth of audits have been completed. These are essential to a) broadly disseminate important findings regarding the outcomes of people admitted to hospital with acute exacerbation of COPD and to; b) inform quality improvement at a local and national level. o NRAP (hosted by Crown Informatics): www.NRAP.org.uk 2) The second was released by NHS Digital in October 2018 and pertained to the cohort of COPD audit patients discharged from hospital between February and September 2017. o HQIP’s website: https://www.hqip.org.uk/a-z-of-nca/national-asthma-and-copd-audit-programme-nacap/#.X2TNCXdFz4g – plus newsletters and bulletins Analysis has been conducted and the national report was drafted and sent to HQIP (as commissioners) and NHSE (as funders) for approval. This report published in May 2019. Site-level reports were drafted and were released to local clinicians on the same day (i.e. the day of national report release). Peer reviewed publications followed (they must follow the publication of the national audit report). • Notification to relevant web tool users from participating hospitals (the number that participated in each specific cohort) across the relevant devolved nation. These sites will be notified in order to inform them of availability of hospital-level reports on the audit web tool (this will occur via the same launch email to hospitals regarding the national report). Future outputs: • Social media The RCP would intend to produce similar outputs for all subsequent releases of data, more specifically: • Briefing documents and launch communications provided to stakeholder organisations such as Asthma + Lung UK; and NRAP governance group members - A national ‘outcomes’ report (6 months post release of data) • Conferences and events where NRAP has a presence (e.g. BTS Meetings) - Local ‘outcomes’ reports, providing hospital level data bench-marked against the national data (6-8 months post release of data) The target dates for production and dissemination of the outputs are October 2025. - Publications in peer-reviewed journals (post first 2 outputs) As per the original application, the results of the audit programme elements will be fed back to health professionals and broader stakeholder groups to support improvement activities. The reports/publications will only present aggregated data, and will not include patient level data (anonymised or otherwise). When reporting outside a Trust there will never be any information which can be linked back to an individual patient by virtue of it being a unique case/experience (either nationally or within a locality). All outputs will be aggregated with small number suppression applied as per the HES analysis guide.

Expected measurable benefits

The National Asthma and COPD Audit Programme (NACAP) published an outcomes report based on the data released by NHS Digital in October 2018 (see expected outputs section) in May 2019. This and all planned subsequent reporting have been later than expected due to delays in obtaining the linked data and/or in the report reviewing process (by the funders and commissioners). Outcomes data for the COVID impacted period (April 2020 – March 2021) will not be requested. In summer 2020 the programme agreed not to report on COVID impacted data due to significantly reduced data entry levels and serious concerns about the quality and interpretability of data in any NACAP national reporting outputs as a result. As per 'Specific Outputs', further request for data (from April 2021 onwards) will be made as part of an amendment/renewal of data once it has been confirmed that NACAPs agreement has been extended. The COPD audit collects information on the processes of care provided to patients who are admitted to hospital for COPD exacerbations. Care is audited against national guidelines and standards, namely, National Institute of Health and Care Excellence (NICE) COPD guidelines. The data collected as part of the audit by hospital teams provides useful information on what happened during the admission but does not provide further information on longer-term outcomes following discharge. The Data requested in this Data Sharing Agreement will therefore support the audit to measure the impact of admission for a COPD exacerbation on readmissions and mortality, thereby generating greater impact for the audit and its aims to improve key processes of patient care (such as provision of COPD care bundles on discharge). Outside of any delays or data impacted by the pandemic, NACAP aims to produce annual outcomes reports (i.e. post obtaining annual linkages), which will allow the quality improvement benefits outlined below to be realised locally. This information is expected to generate important knowledge that can inform the allocation of resources for COPD care in hospitals, leading to better commissioning and value for money within the NHS. This information is also particularly important given that respiratory disease, including COPD, features within the NHS Long Term Plan, which is driving to improve care for major health conditions (NHS Long Term Plan, 2019: https://www.longtermplan.nhs.uk/online-version/chapter-3- further-progress-on-care-quality-and-outcomes/better-care-for-major-health-conditions/respiratory-disease/). In addition, by requesting Data on the rate of patient co-morbidities, the National Respiratory Audit Programme (NRAP) can allow for more accurate risk assessment. This information should enable clinicians to identify patients with higher risk of poorer outcomes based on what comorbidities they have. As part of the National Asthma and COPD Audit Programme at the RCP, the COPD care clinical audit has now developed into a comprehensive quality improvement initiative, which combines several elements: The use of the Data could: - Description of facilities, services and practice in different units around England and Wales • help the system to better understand the health and care needs of populations. - Audit of practice against the NICE quality standards (QS10: https://www.nice.org.uk/guidance/QS10) and guideline for COPD (CG101: https://www.nice.org.uk/guidance/CG101) • lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience. - Performance evaluation to support NHS England’s Best Practice Tariff (see https://copdaudit.org.uk/copd/welcome.nsf/reportsSCbpt.html) • advance understanding of regional and national trends in health and social care needs. - Support for clinical governance in individual hospitals • inform planning health services and programmes, for example to improve equity of access, experience and outcomes. - Metrics to support the National Clinical Audit Benchmarking project (https://www.hqip.org.uk/national-programmes/clinical-audit-benchmarking/) • inform decisions on how to effectively allocate and evaluate funding according to health needs. - A framework to support local and national audit work • provide a mechanism for checking the quality of care. This could include identifying areas of good practice to learn from, or areas of poorer practice which need to be addressed. - An infrastructure for scientific and research work • support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work). - A resource of specialist information, expertise and networking. Through publication of the national and hospital-level outcomes reports, the recommendations of the audit will be implemented by the relevant care providers and commissioners to ensure best practice across the board in the care of COPD patients. Reports must be addressed by all NHS provider services as part of Quality Accounts. In between reports, NHS provider services are expected to implement any relevant recommendations and improve the quality care by carrying out a local gap analysis and making changes to service provision. We envisage that the data requested in this application will support: The NRAP would expect change to start shortly after publication of the report and within 3 years aims to improve process reliability of delivery of key aspects of COPD care from current levels to a level where all aspects of high quality care, as set out in National COPD Guidelines, are delivered in 80% of patients. If this is achieved, NRAP would hope to see a reduction in hospital admissions and a reduction in re-admissions following a discharge from hospital of 20%. It would also hope to see a reduction in mortality of a similar magnitude. - Measurement of the impact of admission due to acute exacerbation of COPD on both short-term outcomes (e.g. inpatient mortality), as well as medium and long-term outcomes (e.g. readmissions at 30/90 days and mortality at 30/90 days). This will generate important knowledge that will inform the allocation of resources for COPD care, leading to better commissioning and value for money. Awareness of what patients should expect from their care provider, and how their local provider Trust/Board is performing, can help people with COPD to insist on better quality care. The reports and supporting infographics can be used by patients and patient groups to communicate with their care provider if their care is not meeting the expected standards or if the service appears to be performing lower than expected. - Measurement of the rate of patient co-morbidities, including mental health. This will allow more accurate risk-adjustment and also support analyses being conducted regarding parity of esteem. This will enable clinicians to identify patients with the highest risk of poorer outcomes – leading to better care and better delivery of services (i.e. value for money). The COPD audit is part of a wider programme of asthma and COPD audits which also includes a healthcare improvement workstream. The NRAP works closely with organisations such as Asthma + Lung UK to disseminate messages and ensure audit data is represented (e.g. inclusion in the Taskforce for Lung Health). - This information will all support the programme's Quality Improvement element - whereby data is used to support teams to improve care. What the RCP hopes to achieve with subsequent releases of data: - Continued production of national and local reports detailing patient outcomes (i.e. mortality and readmissions) to allow sites to understand the extent to which their data compares to the national average and national quality improvement (QI) standards and, subsequently, to inform local improvement and service development. This will also allow sites to monitor trends in patient outcomes. - Production and updating of reporting to sites via the audit web-tool.

Benefits reported

The production and dissemination of national and site level reports detailing patient [34 words unchanged] areas of success or areas that require improvement. This subsequently informs local quality healthcare improvement initiatives, shared learning, local change and service development. [1 paragraph unchanged] Outcomes data also supports the NACAP outcomes outlier reporting process. NACAP will identify services who are following outside of ≥3 standard deviations from the mean = alarm and ≥2 standard deviations from the mean = alert (as per the HQIP/NCAPOP outlier policy) and offer particular support to those services to improve their patient healthcare processes and outcomes. The outcomes reporting outputs are produced at national level (presenting national and country level results) and individual site level. This has enabled participating services to benchmark their performance against national and country level averages and supported the identification of areas for success or for improvement. This has in turn supported national and local healthcare improvement initiatives and service development. National Asthma and COPD Audit Programme (NACAP)'s patient involvement work identifies patient priorities for the provision of services that are reported against supporting local healthcare services to reflect on care provision that is of importance to patients. NACAP's patient reports also provide the report findings in an accessible format (infographics, icons, short tailored resources) that we hope empowers patients to work with their clinicians to drive local improvement in services and understand the impact of the findings on their own care. Previous recommendations have helped the system to better understand the health and care needs of populations as follows: The dissemination of outcomes data is in the public interest as it enables identification of where healthcare and services need to be improved. It encourages shared learning between healthcare services and supports the identification of national and local QI initiatives and service development. Identifying areas of healthcare which require improvement would be difficult if the reporting outcomes data was not provided. The improvement of healthcare services ultimately leads to better quality of patient care, which may result in better patient outcomes. Outcomes data will additionally support the NACAP outlier reporting process as described in section 1 above and enable the identification of services that may need particular support. The clinical outcomes report, published March 2023, is currently being used by service providers, commissioners and clinical teams in reviewing and recognising their areas of success or areas requiring improvement to help influence and affect the change. Dissemination of audit findings and patient reports are intended to not only make patients aware of service standards locally but also to empower them to work with their care providers to ensure their care is delivered according to those national standards. The data presented within the latest clinical outcomes report have been found to be extremely useful in providing a pre-COVID state of healthcare and a baseline on which services can be re-built. Currently, there is a joint responsibility for policy makers, commissioners and NHS services to ensure development of excellent care post-COVID, the published report is intended to support that. The outcomes reporting outputs are produced at national level (presenting national and country level results. The last COPD outcomes report can be found at: https://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-copd-clinical-audit-201718) and individual site level. This has enabled participating services to benchmark their performance against national and country level averages and supported the identification of areas for success or for improvement. This has in turn supported national and local quality improvement initiatives and service development. Respiratory services have been working differently since the pandemic, and the next set of data to be published will show how outcomes for people with asthma and COPD were affected coming out of COVID-19 (April 2021 onwards). This report highlights the need for all parts of the health service to prioritise respiratory care as they recover from the pandemic, so that everyone with asthma and COPD gets the care they need. The 2017/18 NACAP COPD outcomes report reported the following outcomes: Previous recommendations have lead to the identification of improvements required to health and care system design, to improve health and care outcomes as follows: • Patients with comorbidities were more likely to be readmitted within both 30 and 90 days of index discharge. Asthma and Lung UK stated that the data show that many people are being readmitted to hospital within 3 months of going home and that some are dying within 3 months of their exacerbation (see key findings below). This suggests that the healthcare community must look critically to see if there is more that can be done to make sure that anyone admitted to hospital for their asthma or COPD gets the best possible support afterwards to avoid future flare ups. • Patients with a Charlston Comorbidity Index (CCI) of 7 or more were twice as likely to be readmitted within both 30 and 90 days of index discharge than a patient with no comorbidities. COPD: 6.1% died within 30 days of admission, 11.9% within 90 days. • Patients who were admitted to hospital for longer than 4 days (the median length of stay) were 20% more likely to be readmitted within both 30 and 90 days of index discharge. Previous recommendations have advanced understanding of regional and national trends in health and social care needs. An interactive report was published for the clinical outcomes report allowing users to quickly view data presented based on regions and nations. This report can be found here: https://www.rcplondon.ac.uk/file/44391/download In addition, the outcomes data has supported and informed the NACAP outcomes outlier processes and assist with the identification of healthcare services who may need additional support and guidance. Previous recommendations have also supported knowledge creation or exploratory research. Lessons learnt from obtaining these Data have been used to inform inclusion criteria, outcomes, and case ascertainment methodology changes to strengthen NRAP’s future outcomes reporting.

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Objective for processing

This application relates to the secondary care COPD Chronic Obstructive Pulmonary Disease (COPD) clinical audit element of the National Asthma and Chronic Obstructive Pulmonary Disease (COPD) COPD Audit Programme which has been commissioned by the Healthcare Quality Improvement Partnership [85 words unchanged] sought is to allow the analysis and reporting to achieve this aim. [19 paragraphs unchanged]

Processing activities

Under version 7 of this Data Sharing Agreement (DSA), no further data is being requested. Existing data will be retained for further processing. Under previous versions of this DSA, the following applied: [1 paragraph unchanged] 1. Crown Informatics Ltd send - on an annual basis - specific patient identifiers (NHS Number, Postcode, Date of Birth) plus a Study ID, along with the Date / Time of Arrival at Hospital ID to NHS Digital via a Secure Electronic File Transfer System (SEFT). [7 paragraphs unchanged] - HES or for the cohort with a unique COPD audit identifier. [1 paragraph unchanged] The HES data will include (date date of admission, hospital of admission, date of discharge, date of death) discharge method, discharge destination, episode data (episode order, start, end, diagnoses), and all diagnosis data for all patients with in the following ICD-10 diagnosis codes listed as the primary diagnosis (i.e. in first position) relating to other chronic obstructive pulmonary disease: J44.0, J44.1, J44.8, J44.9., cohort in the defined time period. (for further information on these codes, see https://www.icd10data.com/ICD10CM/Codes/J00-J99/J40-J47/J44-/J44). [11 paragraphs unchanged] Patient Episode Database for Wales (PEDW) data covering patients attending hospital in Wales will be requested separately by the Royal College of Physicians from NHS Data Health and Care Wales Informatics Service (NWIS). (DHCW). No record level data from NHS Digital will be shared with NWIS DHCW under this agreement or vice versa. [7 paragraphs unchanged]

Expected output

[1 paragraph unchanged] The National Asthma and COPD Audit Programme (NACAP) obtained the last batch of linked data from NHS Digital in October 2018 December 2021 (for the cohort discharged from hospital between February October 2018 and September 2017). 2019). A further cohort is due between January and March 2022 (for the cohort discharged from hospital between October 2019 and February 2020). This is the last cohort to be requested under version 6 of this agreement. Analysis was will be conducted upon receipt of the second cohort (October 2019 – February 2020) and the national report was drafted and sent to HQIP (as commissioners) and NHSE (as funders) for approval. Site-level reports have been drafted and results will be released to local clinicians on the same day upon request (i.e. the day of national report release). release) and then publicly via data.gov.uk 10 working days post publication of the report. Peer reviewed publications will follow. NACAP are now seeking linkage an extension to this agreement in order to continue to hold the outcomes data requested and or received by NHS Digital to date. Due to the delay encountered during 2021 with receiving requested data (under agreement version 6) it has not been possible to report as originally planned. There is therefore a need to hold data for longer than originally envisaged. Linkage for their next cohort cohorts (i.e. those discharged from hospital between October 2017 and September 2018) after April 2021) will be requested under an amendment/renewal of data following confirmation that NACAPs agreement has been extended. This will be in approximately Autumn 2022 so that they work can commence work on the same series of outputs (national report will be published approximately [21 words unchanged] tracked and support teams to improve the care they provide for patients. [3 paragraphs unchanged] Local (i.e. hospital level) outcomes reports were also released in 2017. These are not available in the public domain ,but domain, but were sent directly to audit leads at participating hospitals. These reports provided [10 words unchanged] comprehensive understanding of the quality of care delivered locally to be obtained. [10 paragraphs unchanged]

Expected measurable benefits

The National Asthma and COPD Audit Programme (NACAP) published an outcomes report [5 words unchanged] by NHS Digital in October 2018 (see expected outputs section) in May 2019 2019. This was and all planned subsequent reporting have been later than expected due to delays in obtaining the linked data and and/or in the report reviewing process (by our the funders and commissioners). Following this, they aim Outcomes data for the COVID impacted period (April 2020 – March 2021) will not be requested. In summer 2020 the programme agreed not to produce annual reports (i.e. post obtaining annual linkages), which will allow report on COVID impacted data due to significantly reduced data entry levels and serious concerns about the quality improvement benefits outlined below to and interpretability of data in any NACAP national reporting outputs as a result. As per 'Specific Outputs', further request for data (from April 2021 onwards) will be realised locally. made as part of an amendment/renewal of data once it has been confirmed that NACAPs agreement has been extended. Outside of any delays or data impacted by the pandemic, NACAP aims to produce annual outcomes reports (i.e. post obtaining annual linkages), which will allow the quality improvement benefits outlined below to be realised locally. [1 paragraph unchanged] - Description of facilities, services and practice in different units around England, Scotland England and Wales [7 paragraphs unchanged] The We envisage that the data requested in this application will support: [6 paragraphs unchanged]

Benefits reported

The production and dissemination of national and site level reports detailing patient [12 words unchanged] to which their data (which is presented in the individual site level reports) results) compares at a country and national level and identify areas of success [7 words unchanged] informs local quality improvement initiatives, shared learning, local change and service development. The National Outcomes report has provided key recommendations which highlight particular areas requiring attention. These have support national policy and regulatory action and patient empowerment to improve COPD [50 words unchanged] level of social care required for these patients, alongside other healthcare services. [1 paragraph unchanged] National Asthma and COPD Audit Programme (NACAP)'s patient involvement work identifies patient [25 words unchanged] NACAP's patient reports also provide the report findings in an accessible format (infographics, icons, short tailored resources) that can empower we hope empowers patients to work with their clinicians to drive local improvement in services and understand the impact of the findings on their own care. [3 paragraphs unchanged] The 2017/18 NACAP COPD outcomes report reported the following outcomes: • Patients with comorbidities were more likely to be readmitted within both 30 and 90 days of index discharge. • Patients with a Charlston Comorbidity Index (CCI) of 7 or more were twice as likely to be readmitted within both 30 and 90 days of index discharge than a patient with no comorbidities. • Patients who were admitted to hospital for longer than 4 days (the median length of stay) were 20% more likely to be readmitted within both 30 and 90 days of index discharge. [1 paragraph unchanged]

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Datasets: + HES-ID to MPS-ID HES Admitted Patient Care

Expected measurable benefits

Reviewed as accurate June 2020 [17 paragraphs unchanged]

Unchanged: Objective for processing, Processing activities, Expected output, Benefits reported.

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Data controllers: + NHS ENGLAND

Objective for processing

This application relates to the secondary care COPD clinical audit element of the National Asthma and Chronic Obstructive Pulmonary Disease (COPD) Audit Programme which has been commissioned by [90 words unchanged] sought is to allow the analysis and reporting to achieve this aim. [1 paragraph unchanged] - HQIP, who HQIP and NHS England are the joint data controller for this audit programme, determining the purpose and manner to which the data is used. - Crown Informatics, who are the primary data processor. - Imperial College London, who are the primary data processor, combining the requested data with the COPD audit data and processing it for data analysis once this has been done. - Imperial College London, who are the secondary data processor, processing the data once it has been combined with the COPD audit data by Crown Informatics. - The Royal College of Physicians (RCP), who are the secondary data processor, and will help advise Imperial College London on clinical elements of the methodology and will interpret the findings. - The Royal College of Physicians, who are the secondary data processor, and will help advise Imperial College London on clinical elements of the methodology and will interpret the findings. In addition to the information collected by hospitals, an element of the audit’s design (and included explicitly in the section 251 approval) requires the linkage of audit data to Hospital Episode Statistics (HES) and Mortality data. This is used for the following reasons: The secondary care audit changed from a snapshot to a continuous audit methodology in February 2017. Its aim is to capture every admission to hospital for an acute exacerbation of COPD in England and Wales. Currently, 98% of eligible hospitals enter data into the audit and the applicant estimates their case ascertainment rate to be in the order of 50%. With over 50,000 clinical records entered to date, this is by far the biggest dataset of its kind in the world. In addition to the information collected by hospitals, an element of the audit’s design (and included explicitly in the S251 approval) requires the linkage of audit data to Hospital Episode Statistics (HES) and Mortality data. This is used for the following reasons: [1 paragraph unchanged] - To allow precise calculation of case ascertainment, both at hospital level and nationally. These data will also be used to inform the COPD Best Practice Tariffs (BPT) reporting (see https://copdaudit.org.uk/copd/welcome.nsf/reportsSCbpt.html) and the data provided to the CQC as part of the National Clinical Audit Benchmarking Project (https://www.hqip.org.uk/national-programmes/clinical-audit-benchmarking/). [1 paragraph unchanged] - To add to the richness of the dataset, data set, whilst not increasing burden workload on local sites. More specifically, co-morbidity and parity of esteem information will be sourced from HES. [1 paragraph unchanged] - To ensure audit-based calculations of inpatient mortality are correct and to [16 words unchanged] function as a surrogate for system care, a vitally important consideration for Health Boards in Wales, Sustainability and Transformation Partnerships (STPs) (soon to be Integrated Care Systems) and Accountable Care Partnerships (ACPs). [1 paragraph unchanged] Legal basis - The Legal basis for the use of data in this application is Article 6 (1) (e) "processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller. " GDPR LEGAL BASIS and Article 9 (2) (i) "processing is necessary for reasons of public interest in the area of public health...". NHS England is responsible for determining which projects/topics are included as part of the NCAPOP. HQIP, as commissioner of the NCAPOP, is responsible for project specification development, procurement and extension activities, contract management and authorising data sharing requests. NHS England, as a funder of the NCAPOP, participates within specification development, procurement and project extension activities and authorises the publication of project outputs. NHS England is responsible for determining which projects/topics are included as part of the NCAPOP. HQIP, as commissioner of the NCAPOP, is responsible for project specification development, procurement and extension activities, contract management and authorising data sharing requests. NHS England, as a funder of the NCAPOP, participates within specification development, procurement and project extension activities and authorises the publication of project outputs. NHS England contract HQIP to commission the NCAPOP and the NHS standard contract with NHS providers of services to participate within the National Clinical Audit and Patient Outcomes Programme (NCAPOP). NHS England - The GDPR legal basis for the use of data in this application is Article 6 (1)(e) "processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller." and Article 9 (2)(h) "Processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3." The secretary of state has a legal duty under section 2 of the Health and Social Care Act 2012 to continuously improve the quality of health care services. NHS England has a legal duty under the NHS Act 2006 section 13e to improve quality of healthcare services. The secretary and NHS England exercise these duties through the NHS England contract with HQIP to commission the National Clinical Audit and Patient Outcomes Programme (NCAPOP), and the NHS standard contract with NHS providers of services to mandate participation within the NCAPOP (to improve the quality of patient care and outcomes). HQIP are therefore performing a public task. The data are requested for reasons of management of Health and Social Care Systems and Services - meeting the conditions in the DPA 2018 Schedule 1 Part 1, schedule 2(2)(f). The conditions and safeguards in DPA 2018 section 11(1) – stating that “For the purposes of Article 9(2)(h) of the GDPR (processing for health or social care purposes etc), the circumstances in which the processing of personal data is carried out subject to the conditions and safeguards referred to in Article 9(3) of the GDPR (obligation of secrecy) include circumstances in which it is carried out by another person who in the circumstances owes a duty of confidentiality under an enactment or rule of law.” NHS England has devolved responsibility (through our HQIP contract with them) for managing the national audits and other programmes we commission on their behalf. This includes managing data access applications, signing data sharing agreements (we are able to do this as we are still a data controller with direct contractual responsibility over the clinical audits, with the organisations managing them acting as our data processors) and exercising due diligence (for IG and data protection) over the commissioned programme. The national clinical audits are publicly funded programmes with dependencies upon the data produced to improve healthcare, monitor safety and inform CQC inspections (plus other dependencies), implementing the right to erasure would have an impact upon these functions. NHS England meets this condition because NHS England is subject to a duty to promote a comprehensive health service, designed to secure the improvement in the physical and mental health of people in England and the prevention, diagnoses and treatment of illness, which it discharges alongside the Secretary of State, except for that part of the health service that is delivered in pursuit of public health functions of the Secretary of State or local authorities. (NHS Act 2006, S1H (2)) and NHS England assists Secretary of State in providing health services and exercising public health functions. Section 12 empowers the Secretary of State to make arrangements with any person or body to provide, or assist in providing, anything that the Secretary of State has a duty or power to provide, or arrange for the provision of, under section 2A or 2B or Schedule 1 of the 2006 Act, as amended (the Secretary of State’s duty as to the protection of public health and the improvement of public health respectively). (NHS Act 2006, S12, HSCA 2012, s22) HQIP - The GDPR legal basis for the use of data in this application is Article 6 (1)(e) "processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller. " and Article 9 (2)(i) "processing is necessary for reasons of public interest in the area of public health...". [1 paragraph unchanged]

Processing activities

On an annual basis, Crown Informatics will send a file with a COPD audit ID and the requisite identifiable information (NHS number, date of birth, gender and full postcode) to NHS Digital. METHOD: NHS Digital will link the data and provide Crown Informatics with: 1. Crown Informatics Ltd send - on an annual basis - specific patient identifiers (NHS Number, Postcode, Date of Birth) plus a Study ID, along with the Date / Time of Arrival at Hospital to NHS Digital via a Secure Electronic File Transfer System (SEFT). - HES non-sensitive data for the cohort with a COPD audit ID. 2. NHS Digital links cohort to HES APC and Civil Registrations (Deaths) data, - Mortality data for the cohort with a COPD audit ID. 3. NHS Digital will pseudonymise the data by removing any patient identifiable information: - HES non-sensitive data (date of admission, hospital of admission, date of discharge) for all patients with the following ICD-10 diagnosis codes listed as the primary diagnosis (i.e. in first position) relating to other chronic obstructive pulmonary disease: J44.0, J44.1, J44.8, J44.9., in the defined time period. (for further information on these codes, see https://www.icd10data.com/ICD10CM/Codes/J00-J99/J40-J47/J44-/J44). - Study ID to remain. Crown Informatics will receive data from NHS Digital and combine with COPD audit data. This will be pseudonymised (NHS number replaced with COPD audit ID; postcode reduced to first four digits; date of birth transformed to age at time of audit; date of death transformed to month/year of death and 30/90 day mortality flags) and shared with Imperial College London to carry out analysis relating to outcomes (readmission and mortality). - change Date of Birth to Age at Arrival at Hospital. - Postcode to be replaced with LSOA. 4. NHS Digital will then send the pseudonymised record level data straight to Imperial College London via a Secure Electronic File Transfer System (SEFT). NHS Digital will provide Imperial College London with pseudonymised: - HES or the cohort with a unique COPD audit identifier. - Mortality data for the cohort with a unique COPD audit identifier. The HES data will include (date of admission, hospital of admission, date of discharge, date of death) for all patients with the following ICD-10 diagnosis codes listed as the primary diagnosis (i.e. in first position) relating to other chronic obstructive pulmonary disease: J44.0, J44.1, J44.8, J44.9., in the defined time period. (for further information on these codes, see https://www.icd10data.com/ICD10CM/Codes/J00-J99/J40-J47/J44-/J44). Imperial College London will receive the patient level pseudonymised data from NHS Digital and combine with COPD audit data. They will then carry out analysis relating to outcomes (readmission and mortality). - Imperial College London: Data is stored on a password protected computer at on an encrypted internal hard drive which sits in a locked room. The datasheets themselves are also password protected individually as well as the computer. RCP only receive pseudonymised service level aggregated data. - Royal College of Physicians: Data is held and regularly backed up on an internal secure server. Servers are certified to ISO 7001. This ensures that despite a network failure access can still be gained to key information. If remote working (COVID/social distancing measures), access is via individual staff machines and their associated servers at the RCP through a Remote Desktop Gateway. [1 paragraph unchanged] 1. To estimate the number of acute exacerbation of COPD at both national and individual hospital level that have occurred in the requisite period. 1. To derive outcomes (readmissions at 30 and 90 days; inpatient mortality and mortality at 30 and 90 days) for the cohort of patients included in the national COPD audit. 2. To derive outcomes (readmissions at 30 and 90 days; inpatient mortality and mortality at 30 and 90 days) for the cohort of patients included in the national COPD audit. 2. To add to the richness of the original data set, by analysing data on co-morbidities and parity of esteem provided by HES. 3. To add to the richness of the original data set, by analysing data on co-morbidities and parity of esteem provided by HES. Crown Informatics will also make 30-day readmission and survival rates available to hospitals via the audit web-tool (access is password protected). Please note, each hospital will only be able to view their own hospital level data, bench-marked against the national result (after they log-in to the web-tool). In other words, hospitals will not be able to view the readmission and survival rates at other hospitals; this will not be made public. Only data that has emanated from the Trust will be returned to the Trust. [1 paragraph unchanged] The Royal College of Physicians (RCP) of London will help advise Imperial College London on clinical elements of the methodology and will interpret the findings. RCP only receive pseudonymised service level aggregated data. All individuals with access to record-level data are employed by Crown Informatics, the RCP or Imperial College London. No record-level data falling under this agreement will be shared with any third party. All outputs will be aggregated with small numbers suppressed, in line with the HES Analysis Guide. No record-level data falling under this agreement will be shared with any third party. AIMES Management Services (also known as AIMES Grid Services) do not access data held under this agreement as they only supply the building. Therefore, any access to the data held under this agreement would be considered a breach of the agreement. This includes granting of access to the database[s] containing the data. Patient Episode Database for Wales (PEDW) data covering patients attending hospital in Wales will be requested separately by the Royal College of Physicians from NHS Wales Informatics Service (NWIS). No record level data from NHS Digital will be shared with NWIS under this agreement or vice versa. In previous iterations of this agreement, NHS Digital was a data processor for HQIP, which included processing of data regarding patient care in Wales. NHS Digital are no longer processing this data. Patient Episode Database for Wales (PEDW) data covering patients attending hospital in Wales will be requested separately by the Royal College of Physicians from NHS Wales Informatics Service (NWIS). No record level data from NHS Digital will be shared with NWIS under this agreement or vice versa. HQIP are required to ensure that each data processor has appropriate information security processes in place to meet the requirements of NHS Digital, and to confirm such to NHS Digital by 31/05/2019. [1 paragraph unchanged] HES DISCLOSURE CONTROL / SMALL NUMBER SUPPRESSION In order to protect patient confidentiality, when presenting results calculated from HES record level data, outputs will contain only aggregate level data with small numbers suppressed in line with HES Analysis Guide. When publishing HES data, you must make sure that: · cell values from 1 to 7 are suppressed at a local level to prevent possible identification of individuals from small counts within the table. · Zeros (0) do not need to be suppressed. · All other counts will be rounded to the nearest 5. Data will not be made available to any third parties other than those specified except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guide.

Expected output

Update February 2019: This data sharing agreement covers the request from Royal College of Physicians of London for an annual data linkage in order to produce annual outcomes reports, detailing the medium-term outcomes (mortality and readmissions) of the cohort included in the national COPD audit. This is a request for an annual data linkage in order to produce annual outcomes reports, detailing the medium-term outcomes (mortality and readmissions) of the cohort included in the national COPD audit. [5 paragraphs unchanged] Local (i.e. hospital level) outcomes reports were also released in 2017. These are not available in the public domain, but domain ,but were sent directly to audit leads at participating hospitals. These reports provided [10 words unchanged] comprehensive understanding of the quality of care delivered locally to be obtained. [2 paragraphs unchanged] Analysis has been conducted and the national report was drafted and sent to HQIP (as commissioners) and NHSE (as funders) for approval. It has now been confirmed that this This report (i.e. using the data released in October 2018) will be published in May 2019. Site-level reports have been were drafted and will be were released to local clinicians on the same day (i.e. the day of national report release). Peer reviewed publications will follow followed (they must follow the publication of the national audit report). [5 paragraphs unchanged] - Please note, Crown Informatics will also make 30 day readmission and survival rates available to hospitals via the audit web-tool (access is password protected). As per the original application, the results of the audit programme elements will be fed back to health professionals and broader stakeholder groups to support improvement activities. The reports/publications will only present aggregated data, and will not include patient level data (anonymised or otherwise). When reporting outside a Trust there will never be any information which can be linked back to an individual patient by virtue of it being a unique case/experience (either nationally or within a locality). As per the original application, the results of the audit programme elements will be fed back to health professionals and broader stakeholder groups. The reports/publications will only present aggregated data, and will not include patient level data (anonymised or otherwise). When reporting outside a Trust there will never be any information which can be linked back to an individual patient by virtue of it being a unique case/experience (either nationally or within a locality). All outputs will be aggregated with small number suppression applied as per the HES analysis guide.

Expected measurable benefits

Update February 2019 Reviewed as accurate June 2020 The National Asthma and COPD Audit Programme (NACAP) have not yet published an outcomes report based on the data released by NHS Digital in October 2018 (see expected outputs section) in May 2019 This was later than expected due to delays in obtaining the linked data and in the report reviewing process (by our funders and commissioners). NACAP still expect the benefits outlined below, but this is predicated on the data being published in the public domain, which will happen in May 2019. Following this, they aim to produce annual reports (i.e. post obtaining annual linkages), which will allow the quality improvement benefits outlined below to be realised locally. [1 paragraph unchanged] - Description of facilities facilities, services and practice in different units around England England, Scotland and Wales [9 paragraphs unchanged] - Measurement of the rate of patient co-morbidities, including mental health. This will allow more accurate risk-adjustment and also allow for support analyses to be being conducted regarding parity of esteem. This will enable clinicians to identify patients [9 words unchanged] to better care and better delivery of services (i.e. value for money). [2 paragraphs unchanged] - Continued production of national and local reports detailing patient outcomes (i.e. [7 words unchanged] understand the extent to which their data compares to the national average and national quality improvement (QI) standards and, subsequently, to inform local change improvement and service development. This will also allow sites to monitor trends in patient outcomes. [1 paragraph unchanged]

Benefits reported

Achievements using the data already held: The production and dissemination of national and site level reports detailing patient outcomes (i.e. mortality and readmissions) allow participating sites to understand the extent to which their data (which is presented in the individual site level reports) compares at a country and national level and identify areas of success or areas that require improvement. This subsequently informs local quality improvement initiatives, shared learning, local change and service development. - Production of national reports detailing patient outcomes (i.e. mortality and readmissions) - to allow sites to understand the extent to which their data compares to the national average and, subsequently, to inform local change and service development. Please see: https://www.rcplondon.ac.uk/projects/outputs/copd-who-cares-when-it-matters-most-outcomes-report-2014. This included a list of key recommendations (including improving integration of care and discharge processes) to support hospitals to reduce the high rates of readmissions related to COPD. The National Outcomes report has provided key recommendations which highlight particular areas requiring attention. These have support national policy and regulatory action and patient empowerment to improve COPD care. Depending on findings, local action to improve patient outcomes has been identified for instance, encouraging hospitals to take action to reduce readmission (which are high for COPD) and mortality rates and ultimately improve patient healthcare and outcomes. Improving patient outcomes in this population has the potential to reduce the level of social care required for these patients, alongside other healthcare services. - Production of local reports (shared only with the relevant hospital), to allow them to understand the extent to which their data compared to the national average and, subsequently, to inform local change and service development. Outcomes data also supports the NACAP outcomes outlier reporting process. NACAP will identify services who are following outside of ≥3 standard deviations from the mean = alarm and ≥2 standard deviations from the mean = alert (as per the HQIP/NCAPOP outlier policy) and offer particular support to those services to improve their patient healthcare processes and outcomes. National Asthma and COPD Audit Programme (NACAP)'s patient involvement work identifies patient priorities for the provision of services that are reported against supporting local healthcare services to reflect on care provision that is of importance to patients. NACAP's patient reports also provide the report findings in an accessible format that can empower patients to drive local improvement in services and understand the impact of the findings on their own care. The dissemination of outcomes data is in the public interest as it enables identification of where healthcare and services need to be improved. It encourages shared learning between healthcare services and supports the identification of national and local QI initiatives and service development. Identifying areas of healthcare which require improvement would be difficult if the reporting outcomes data was not provided. The improvement of healthcare services ultimately leads to better quality of patient care, which may result in better patient outcomes. Outcomes data will additionally support the NACAP outlier reporting process as described in section 1 above and enable the identification of services that may need particular support. Dissemination of audit findings and patient reports are intended to not only make patients aware of service standards locally but also to empower them to work with their care providers to ensure their care is delivered according to those national standards. The outcomes reporting outputs are produced at national level (presenting national and country level results. The last COPD outcomes report can be found at: https://www.rcplondon.ac.uk/projects/outputs/national-asthma-and-copd-audit-programme-nacap-copd-clinical-audit-201718) and individual site level. This has enabled participating services to benchmark their performance against national and country level averages and supported the identification of areas for success or for improvement. This has in turn supported national and local quality improvement initiatives and service development. In addition, the outcomes data has supported and informed the NACAP outcomes outlier processes and assist with the identification of healthcare services who may need additional support and guidance.