Hospital Episode Statistics (HES), ECDS, Diagnostic Imaging Dataset (DIDs) and sensitive Mental Health data to assist disease awareness, commissioning, and help to produce longitudinal rare disease analysis and reports

In term In term in the September 2026 edition: the latest version runs to 17 December 2026.

Reference: DARS-NIC-16016-Y9H1D
Current version: v15.11
Term of current version: 4 March 2026 to 17 December 2026
Start date: Before 26 July 2019
Data controller: Sole Data Controller
Commercial purposes: Yes
Sublicensing: No
Files released to date: 653

Why the data was released

Objective for processing

HSJ Information Ltd. requires access to NHS England Data for the purposes of:

1. Raising disease awareness, management and diagnosis through analysing data and publishing reports and tabulations which are available in the public domain.

2. Supporting the commissioning, healthcare and service improvement cycle and enhancing patient outcomes through understanding disease progression and applying it to the continual improvement of service development.

3. Producing longitudinal rare disease analysis and reports that enable patients to receive the correct treatment for a condition that had not yet been diagnosed, e.g. no testing available, and no definitive diagnosis reached by the clinician.

Data is used in 4 phases:

During the analysis phase, the objectives are to:

- Assess pathway(s) and/or organisation(s) performance against similar comparisons to understand where change could be required to achieve Quality, Innovation, Productivity and Prevention (QIPP) or Getting It Right First Time (GIRFT) planning or implement NHS long term plans/strategies.

Data is not used to specifically feed into the GIRFT programme. Instead, the Data is used to look at and assess the variation in organisations' activity where there are specific GIRFT measures available in HES. For example, where there are Operating Procedure Codes Supplement (OPCS) codes mentioned in a GIRFT report, looking for those codes in the data and comparing this with activity levels and best practice to understand areas of variance, and where an organisation could focus their planning to better reach or implement GIRFT opportunities/strategies.

HSJ Information Ltd. do not specifically look at anything directly with GIRFT, however, they have mapped data from trust to GIRFT regions to understand where there may be variation to benchmarks and opportunities for comparison with trusts in these areas. HSJ Information Ltd. has also looked at measures available in HES that are also talked about under GIRFT programmes, (e.g. procedures) again not specifically with GIRFT.

During the planning phase, the objectives are to:

- Communicate with all NHS stakeholders explaining the rationale for change and create engagement with users to understand their needs in the commissioning, healthcare and service improvement process.

- Identify local health economies which are managing a specific disease effectively. To use this data to quantify what success will look like in terms of reduced inappropriate hospital activity and cost plus decreased comorbidity patient disease .

- Apply predictive modelling where appropriate to understand the potential impact on patients plus the health and social care system by adopting a clinical pathway or service design which is optimal.

During the implementation phase, the objectives are to:

-Enable continual monitoring, communication and education with all NHS stakeholders as to the rationale and requirements for a new clinical pathway or service.

During the review phase, the objectives are to:

- Review progress frequently and make any necessary, close to real-time, changes to the pathway or service to optimise efficiency.

The following NHS England Data will be accessed:

• Hospital Episode Statistics (HES) Admitted Patient Care, Accident & Emergency, Critical Care, Outpatients

• Emergency Care Data Set (ECDS)

• Mental Health Services Data (MHSDS)

• Diagnostic Imaging Data Set (DIDS)

The above datasets are necessary to support a wide range of partners and engage with the NHS in a data-driven, effective and efficient way, including life science companies, charities and not-for-profit organisations, as well as the NHS itself. These projects are highly varied and therefore require a broad range of datasets to fully visualise services across the system, especially with the focus on integrated care.

Projects range across therapy areas and patient settings, therefore data across ECDS and HES is necessary to ensure that HSJ Information Ltd. and its partners can analyse a full patient pathway and visualise how the patient journey can interact with various areas of the system. This situational setting analysis then extends and interacts with the DIDS Set to encompass diagnostic pathways from referral and subsequent interventions and outcomes, and the MHSDS to analyse the system activity of patients with Mental Health diagnoses and how those patient cohorts interact with the various areas of the system.

HSJ Information Ltd. undertakes numerous projects utilising NHS England Data on a yearly or one-off basis. Insights including HES Data contain Quantis outputs.

Quantis portal system is an electronic online commissioning, healthcare and service improvement support solution generating outputs that are aggregated, small number suppressed. The portal contains visualisations of data, to help translate data into a digestible format. This is particularly desired by those interacting with the data whose primary role is not data-focused. The system contains data that is minimised using the recommended guidelines and filters the data into visualisations that are easy to understand.

The Quantis portal outputs are used by registered, authenticated users who have access under specific terms and conditions, over a sustained period, typically of one to two years. Recipients of the portal system are predominantly pharmaceutical companies (~75%) who use this with their healthcare provider customers, but also include charities and the NHS directly.

The Quantis system is only to be provided to a restricted number of users, who have undergone and passed protocol training within one month of access being granted.

Access to the portal works as follows;

Each user organisation agrees a contract with HSJ Information Ltd. stipulating Terms and Conditions (T&Cs). This contract provides additional safeguards clearly explaining data privacy, and acceptable use of the system and the data it contains. The agreement contains but is not limited to:

• The outputs to be used exclusively for the provision of outputs to assist health and social care organisations.

• The outputs are not to be used principally for commercial purpose

• The same aggregated HES, Mental Health data or DIDs data outputs are to be made available, if requested, to all health and social care organisations, irrespective of their value to the company

• The users of the Quantis system are provided with HES Protocol training, which is an assessment that demonstrates that users know the regulations plus T&Cs relating to the use of HES, Mental Health data or DIDs data outputs. Users are provided with secure login details (username and password) that they must authenticate to access the Quantis system.

• HSJ Information Ltd. Customer Service team are responsible for user management, with the organisation’s commitment, all existing leavers and removing from the Quantis system

The Quanits portal outputs assist health and social care in creating and delivering the Quality, Innovation, Productivity and Prevention (QIPP) priorities, Five Year Forward View Planning, implementation of NICE Health Technology Appraisals (HTAs), Sustainability and Transformation Plans, New Models of Care and local Five Year Commissioning Plans and Joint Strategic Needs Assessment (between health and social care), optimal pathway modelling as well as GIRFT service reviews.

The ability to provide feedback in relative real time on the success of a new pathway or new service is critical to the realisation of a redesign project. Monthly Data is vital to show changes at an organisational level such as Integrated Care Systems (ICSs) what is happening in their organisation and how that is changing, in as close to real-time as available. Understanding and elucidating actionable insights on challenges they meet, or impacts of service change they make, based on data, makes a stronger case for service improvement. Monthly trends are important in all stages of change – analysis, planning, implementation and review. Working with out-of-date data may mean decisions are taken without knowing the most recent situation available.

The level of the Data will be:

• Pseudonymised

The Data will be minimised as follows:

• Limited to data between 1st April 2014 to the most recently available data disseminated as per the DSA.

The Data will be minimised for each use in the following ways:

1. Raise disease awareness, management and diagnosis through analysing data and publishing reports and tabulations which are available in the public domain.

2. Support the commissioning, healthcare and service improvement cycle and enhance patient outcomes through understanding disease progression and applying to the continual improvement of service development.

For points 1 and 2 above, outputs will only contain the most recent 5 years of data.

3. Produce longitudinal rare disease analysis and reports that enable patients to receive the correct treatment for a condition that had not yet been diagnosed, e.g. no testing available, no definitive diagnosis reached by the clinician.

For point 3 above, 10 years of data are required as HSJ Information Ltd. undertakes projects for rare disease studies, where a specific diagnosis for that condition is not available. This therefore requires detailed analysis of patient diagnoses over the 10 years to develop patterns of diagnoses/procedures for patients and create a cohort of patients most likely to have a rare condition for them to be tested and treated appropriately.

HSJ Information Ltd. require these 10 years of Data as these conditions impact less than 5 in 10,000 patients, therefore, this length of time is necessary to develop a robust cohort of patients for analysis.

Data is minimised by HSJ Information Ltd. on a project-by-project basis to ensure that only the appropriate fields are processed.

The minimisation per use will be reviewed and approved by the HSJ Information Ltd. Advisory Board. The board contains non-commercial members of HSJ Information Ltd. staff and also lay members who asses each new project against HSJ Information Ltd’s Data Protection Impact Assessment (DPIA) and Data Sharing Agreement (DSA) to ensure alignment and ensure no variations or new uses of the data. The advisory board asks the submitter to consider if any other data, such as data in the public domain can be used for which they are applying.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(f) - processing is necessary for the legitimate interests pursued by the controller or by a third party.

HSJ Information Ltd. has determined the processing is necessary for its legitimate interests in being able to provide tools and services that will benefit healthcare organisations.

HSJ Information Ltd. is a commercial company and charges for its services (on a profit-making basis) to specifically provide services to benefit NHS health and social care. The Data to which access is requested are proportionate and necessary and HSJ Information Ltd have completed a legitimate interest assessment (LIA) and is satisfied that the interests of the data subjects do not override their legitimate interests; and that they would reasonably expect the processing and it would not cause unjustified harm.

The lawful basis for processing special category data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

This processing is in the public interest because the data subjects’ interests and fundamental rights are protected through appropriate minimisation of fields and patient records being processed; pseudonymisation to minimise any risk of identifying individuals; protection of the data in a secure environment, and guaranteeing secure destruction at any stage at the request of NHS England or after a defined period on completion of the project

Nasstar provides IT support and IT hosting services to HSJ Information Ltd and will store the Data as contracted by HSJ Information Ltd. Their primary responsibilities are to provide a dedicated infrastructure environment, desktop services and support including a 24x7 services desk.

Snowflake provides Cloud services to HSJ Information Ltd.

Snowflake has capabilities to support the infrastructure that hosts the Data but not the permissions to access the Data.

HSJ Information Ltd are the sole controller, it determines the data is processed, and the purposes, and administers the advisory board that reviews each project. HSJ Information Ltd is responsible for user and data management of the licenced data in line with agreement.

Data will be accessed by substantive employees of HSJ Information Ltd.

Processing activities

No data will flow to NHS England for the purposes of this Data Sharing Agreement (DSA).

NHS England will provide the relevant records from the HES, ECDS, DIDS and MHSDS datasets to HSJ Information Ltd. The Data will contain no direct identifying data items. The Data will be pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient.

Sensitive MHSDS is required because it helps contextualise patient journeys through the mental health care system.

HSJ Information Ltd provides suppressed and minimalised extracts of the data specific and minimised to the project specification, and of which the purpose has been signed off by the advisory board containing lay members. This data is suppressed and minimalised to the relevant disclosure rules for the dataset(s) from which the information is derived. This suppressed, minimalised data is made available via the Quantis platform or published in reports/other outputs (e.g. journal articles) for use for the intended purpose as agreed by the advisory board.

The Data will be stored only on Snowflake AWS, going forward, and managed directly by HSJ information’s internal teams.

There is no separate HSJ backup of this data outside the Snowflake environment.

The Data will be accessed at HSJ Information Ltd's premises or via remote access by authorised personnel only.

HSJ Information Ltd must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.

For remote access:

- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;

- Access controls granting users the minimum level of access required are in place;

- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;

- Multifactor authentication (MFA) is required for remote access;

- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for remote access;

- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.

The above applies in addition to any condition set out elsewhere within the DSA.

The Data will not leave England and Wales at any time.

Access is restricted to employees or agents of HSJ Information Ltd restricted to individuals from the following teams, who have authorisation from the Data Custodian for the following purposes:

• The technology team for data loading and warehousing purposes.

• The analyst team for processing, aggregation, and suppression purposes.

• The delivery team for supporting partners in defining their project purposes using the most relevant datasets.

• The innovation team as data custodian.

All such individuals are substantive employees of HSJ Information Ltd and have been appropriately trained in data protection, confidentiality, and disclosure control and have undertaken and passed additional training certification which is renewed annually.

The Data will not be linked with any other data.

There will be no requirement and no attempt to reidentify individuals when using the Data

Substantive employees of HSJ Information Ltd will load the files received directly from NHS England and warehouse that data in secure environments.

The analyst team aggregate the data with suppression rules applied to show different measures against different dimensions within the HES data sets according to the HSJ Information Ltd advisory board approved purpose statement and approved data sources of the project they are working on.

Expected output

The expected outputs of the processing will be:

• Recommendations on how to achieve an overall improvement in patient outcomes, including reduced comorbid disease, mortality, Length of Stay (LOS), and hospital-acquired infection. Upon the implementation of recommendations, HSJ Information Ltd would expect there to be benefits to the provision of health and social care.

• Outline the benefits for the appropriate movement of patient treatment from inpatient to outpatient or primary care

• Demonstrate the reduction of the patients requiring more care in social care by implementing effectively designed clinical pathways and services to prevent patients from leaving healthcare and becoming a burden on social care without effective treatment

The above three outputs are more generalised outputs aligned to HSJ Information Ltd overall purpose, these outputs could take the form of Reports, Tabulations or Dashboards.

• Provide detailed, evidence-based recommendations for how to improve care in specific organisations or therapy areas

• Presentations to healthcare professionals of the information required to understand their own organisation’s performance to enable them to reduce cost whilst simultaneously delivering best-practice healthcare

• Allow clinicians and commissioners to interpret the Data and take appropriate actions to safeguard against excess mortality, reduce mortality rates and improve the quality of care where possible

Quantis has a growing user base, predominantly life sciences companies, but clients also include NHS and charity users, resulting in increasing numbers of users benefitting from the data insight and analysis provided by the system.

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.

HSJ Information Ltd undertakes numerous projects utilising NHS England data on a yearly or one-off basis. These outputs include:

Reports:

• Disease Insight Reports

• Costed Integrated Pathways

• Infographics

• Presentations

• Submissions to peer review journals

Tabulations:

• Excel-based outputs

• Tableau-based outputs

Dashboards:

• Quantis portal system

• Online dashboards

• Offline dashboards (MS Excel, Tableau or other BI software)

• Maps

• Augmented analytics

Examples of outputs produced using NHS England data by HSJ Information Ltd, with case studies published online:

• DISEASE INSIGHT REPORTS: HSJ Information Ltd, in conjunction with the Multiple Sclerosis Trust (MS Trust) have published a Disease Insight Report into the burden of hospitalisations in multiple sclerosis. This provided a detailed analysis of HES data. This report was first launched at the MS Trust Annual Conference and was also shared by Public Health England and the National Clinical Director for Neurology. All disease insight reports are made available to the general public

• NIEMANN- PICK C (NPC) ALGORITHM: HSJ Information Ltd has produced an algorithm that is used to search HES data using the NPC Clinical Suspicion Index to identify patients who may have attenuated Niemann-Pick C (NPC). NPC is a neuro-visceral lipid storage disorder which causes progressive neurological disease. The disease usually starts in childhood and usually results in death in the late second or third decade from aspiration pneumonia. However, there are also many patients who have 'attenuated' forms of the disease which present later in life with some atypical clinical features and slow progression. The Suspicion Index lists the symptoms and signs of NPC. The diagnostic tool has been validated and published (Neurology 2012;78(20):1560-7). This has identified the ICD-10 codes which are associated with each symptom in the Suspicion Index and then used combinations of these codes to search for patients with a high suspicion of a diagnosis of NPC.

• DATA-DRIVEN DASHBOARD, PARKINSON’s UK: HSJ Information Ltd has worked in conjunction with Parkinson’s UK to build a data-driven dashboard that aims to enable individual CCGs to understand their performance in Parkinson’s management.

• IMPACT OF DEPRESSION TOOL: A Client commissioned HSJ Information Ltd to produce an Impact of Depression tool to better understand the use of mental health services across the UK. This tool is now in use and has provided valuable insights into the use of mental health services across the UK.

• SECONDARY PROGRESSIVE MULTIPLE SCLEROSIS (SPMS) IMPACT REPORT: In 2019 HSJ Information Ltd produced an SPMS impact report to raise awareness of the impact of the needs of this client group. The report will be launched in parliament and will provide recommendations for changing practices. The report contains a specific analysis of each UK-wide commissioning group/health board number of people likely to reside with the condition to enable local understanding of the condition impact and likely service requirements. Additionally, the articles have been published in a peer-reviewed journal which highlights the need for comprehensive health needs assessment in patients with conditions like MS. HSJ Information Ltd has held an MS nurse advisory board to help understand the problems nurses are facing with managing increasing caseloads within their work areas. Data has been supplied to nurses to support service change and pathway development.

•CVD HEART VALVE DISEASE REPORT AND PRESENTATION: In partnership with the charity Heart Valve Voice and an expert clinical stakeholder group, HSJ Information Ltd developed an optimal pathway ‘Malcolm’s story’ using the Right Care methodology and a Delphi consensus process (a well-established approach to research, identifying a consensus view across subject experts which encourages reflection among participants, who share opinions and reconsider their opinion based on the anonymised opinions of others, ultimately resulting in a one consensus view) to show depict the difference between treating someone with aortic stenosis and providing palliation for heart failure. The means to develop the pathway was based on analysis of HES data for aortic stenosis comparing patient pathways and patient outcomes. The work has been presented at three national conferences including the King's Fund and the British Cardiovascular Society Annual Conference in Manchester.

• CLIENT & GP FEDERATION PARTNERSHIP: A Client of HSJ Information Ltd were approached by the Lead for a large GP Federation, who was interested in working to improve the overall service given to their wound care patients. The Client used the dashboard, which was developed by HSJ Information Ltd, to highlight how many of their patients were accessing unplanned care services for two main areas, Lower Limb Ulcer and Cellulitis

• NTM LUNG DISEASE (NTM-LD) AND NON-CYSTIC FIBROSIS BRONCHIECTASIS: HSJ Information Ltd have provided their client with tabulations that compile a range of HES data for NTM Lung disease (NTM-LD) and Non Cystic fibrosis Bronchiectasis, allowing the costs and activity associated with depression to be understood. Working with opinion leaders in rare respiratory disease the tabulations have been used to better understand the geographical spread of NTM-LD, an orphan respiratory disease. This in turn has been helpful in the design of an optimal patient pathway and the design of a service to specifically help a small but vulnerable patient population.

IDA AND HYPERKALAEMIA DASHBOARD: a resource that compiles a range of NHS England activity data for patients with IDA and Hyperkalaemia, with and without concurrent comorbidities, allowing the activity and resource impact associated with each condition to be better understood. The data has been shared in easy-to-use dashboards – which present data from a range of perspectives – key for understanding and changing service to better meet patient need; comparing elective v non-elective stays, cost, LOS, readmission rates etc. for patients with and without the condition, undergoing surgery and with a range of long term conditions.

HEART FAILURE DATA MAPS: A Client of HSJ Information Ltd developed the Heart Failure Data Map. To support this work HSJ Information Ltd provided the data for this resource, including population projections, a granular breakdown of hospital admissions and costs (by scheduled and emergency admissions, sex, and age), as well as how admission rates have increased or decreased over time. Finally, a total mortality figure and mortality indicator value are provided for each area, which provides an estimated number of deaths in a particular area based on its population size.

BLOOD CANCER DASHBOARD: A client of HSJ Information Ltd developed the Blood Cancer Dashboard. To support the client in keeping the resource as up-to-date as possible, HSJ Information Ltd has recently provided hospital episode statistics (HES) to include on the Blood Cancer Dashboard in a new ‘hospital admissions’ tab. This data provides more detailed information on elective and non-elective admissions and readmissions across individual blood cancers and for blood cancers as a group, to be compared with admissions for the UK’s four most common cancers.

DEMENTIA PATHWAY TOOLKIT: In partnership with the University of Manchester Institute of the Brain, the Dementia Academy, and NHS England Greater Manchester Network a piece of work was required to enable understanding of which patient pathways should change to address common issues relating to emergency hospital admissions. The data has spearheaded the development of a multidisciplinary, multi-agency integrated dementia pathway toolkit which highlights trigger factors for GPs, that might precipitate hospital admission so that these can be avoided. Patients and carers were central to the production of the work along organisations including Greater Manchester Police, ambulance service and voluntary sectors. All 12 CCGs in the area have participated and service transformation is underway. The findings have also been shared with other health economies.

DIABETES HEALTH ECONOMY TOOL: A client and HSJ Information Ltd developed a diabetes dashboard system, highlighting variation in metrics such as non-elective admissions in diabetic patients, as well as understanding how related diabetic co-morbidities such as hypoglycaemia can affect hospital admissions. The dashboards are supported by other data sources such as the National Diabetes Audit (NDA) to minimise the HES data used and give a primary/secondary care view for the business case. The outputs from these dashboards were used to support the case for a band 7 diabetic specialist nurse, and recently have been successful in receiving funding and recruiting into a substantive band 7 post.

CHRONIC KIDNEY DISEASE (CKD)REPORT : Published in October 2020, in partnership with Kidney Care UK and an expert clinical stakeholder group HSJ Information Ltd, developed an optimal pathway ‘Sid’s story’ using the Right Care methodology and a Delphi consensus process to provide clarity on the issues faced in managing CKD when dialysis has to be the modality of choice by bringing the scenarios to life in a very realistic way. The pathways compared optimal effective referral protocols vs referral breakdown and loss to the system. The resource provides practical guidance on what everyone can do to improve care and reduce the risks for patients systematically and efficiently.

DIABETES DASHBOARD: A user team have successfully integrated a Quantis diabetes dashboard into their Health Care Provider (HCP) conversations to identify and effect pathway redesign in local diabetes pathways, which has led to improved care for patients living with Diabetes. Due to the success of the HCP engagement with the data analysis, this partnership has been established for over 5 years. HSJ Information Ltd has developed this support by adding an Inequalities analysis to support the NHS Core20PLUS5 conversation, supporting the local NHS DMUs in their plans to improve patient care for those the most deprived 20% who experience higher than average levels of Diabetes and as such poorer outcomes.

IRON DEFICIENCY ANAEMIA (IDA) DASHBOARDS: HSJ Information Ltd collaborated with a life science industry partner to create a set of highly bespoke dashboards that illustrate the burden of iron-deficiency anaemia (IDA) within acute care, with a specific focus on IDA coded alongside high blood-loss surgical activity. In addition to looking at the burden of disease, the tool can be used to interrogate where IDA has a tangible impact on patient outcomes within acute care, such as costs and bed days, to facilitate engagement with sub-national health systems where performance can be improved with modified treatment pathways.

HEART FAILURE DATA MAPS

There are now nearly 1 million people living with heart failure in the United Kingdom, with 200,000 new cases diagnosed each year. This is similar to the total number of people who are diagnosed with the four most common types of cancer – lung, breast, bowel and prostate - combined, and the prevalence of the condition is only set to increase in the coming years due to the effects of an ageing population and increasing rates of obesity.

Heart failure is similarly the leading cause of hospital admissions in over 65s and costs the NHS £2 billion a year (around 2% of its total budget).

As such the Heart Failure Data Map has been developed to demonstrate the impact of the condition on national and local stakeholders, to support consideration of steps that can be taken to improve heart failure service provision and care, to help improve outcomes and quality of life for patients, and similarly to help reduce the burden of the condition on the NHS.

Future outputs:

PRIMARY BILLIARY CIRRHOSIS (PBC) AND FOLLICULAR LYMPHOMA DISEASE INSIGHT REPORT: (Expected Autumn 2023) HSJ Information Ltd is producing a disease insight report that will be used to demonstrate the current patient pathway for PBC and Follicular Lymphoma, highlighting challenges, trends, and variation across the system, and potential inadequacies of commissioned services versus patient need. The report will make recommendations for service redesign and help improve the availability of commissioned pathways for PBC and Follicular Lymphoma. Overall, the Disease Insight Report will use evidence to make suggestions on how to improve care across the patient pathway.

MITRAL VALVE DISEASE (Expected Autumn 2023): HSJ Information Ltd is looking at the variation between sub-optimal and optimal pathways and creating a patient scenario in Mitral Valve Disease. The project will highlight undiagnosed patients, lack of access to treatment and its impact on patients. How using new technologies such as Transcatheter Edge to Edge Repair for mitral valve disease, will enable more patients to be treated and have better health outcomes. HSJ Information Ltd are developing a realistic patient scenario to show the difference between optimal and sub-optimal treatment, highlighting how a fictional patient could have better outcomes if they had more timely access to relevant treatment. There will be a stakeholder meeting with clinicians to present data to highlight the gap in the treatment of these patients and gain consensus around how those patients should be treated.

MITRAL REGURGITATION (MR) AND TRICUSPID REGURGITATION (TR) REPORT (Expected Autumn 2023): HSJ Information Ltd is assessing the burden of Mitral Regurgitation (MR) and Tricuspid Regurgitation (TR) disease by identifying the number of diagnosed patients, treatment performed and specific outcomes (mortality, readmissions, NHS resources consumption, Length of stay) using HES analysis. The burden of MR and TR disease will also assess the access to treatment for both Degenerative and Functional MR & TR within England. The report will describe the current pathway for MR & TR patients in England and it will also set out the unmet need for MR & TR detection and treatment within England. The report will look to establish a case for change in order for NHS services to be commissioned to meet patient demand

Expected measurable benefits

It is not possible to provide full details of all expected measurable benefits and timings because many of the projects on which HSJ Information Ltd will use NHS England Data have not yet been tendered. HSJ Information Ltd works on multiple projects, at short notice, for a large number of different national, regional and local organisations.

Nevertheless, HSJ Information Ltd expects to benefit the provision of health and social care through their work, with a particular focus on:

• Increasing the appropriate diagnosis of a disease and minimise misdiagnosis and improve patient treatment/outcomes

• Raising awareness of a specific disease, and enabling patients to better understand their condition.

• Analysing the management of disease

• Identifying where local health and social care organisations should focus their planning

• Understanding the efficiency of existing clinical pathways and services

• Modelling more efficient, integrated (between health and social care) pathways and services by understanding patient cohort journeys and the progression of poorly managed disease

• Monitoring the success of a newly implemented pathway and/or service

• Assisting local health and social care environments in identifying where service efficiencies and patient outcomes can be improved before monitoring the impact of any intervention

• Studying disease progression, over time, both locally and nationally. Process map patient cohort journeys through data to show the cost of ineffective disease management and the consequences to patients and the social system

• Showing healthcare activity and cost, comparing like-for-like organisations and trending data over time

• Mapping performance locally and nationally where specialist teams or resources are in place

• Providing a reliable evidence baseline for performance to inform key decisions and to enable measurement of impact on the condition

• Addressing healthcare inequalities

• Providing transferable collaborative service solutions

• Measuring the success and effectiveness post-implementation of a new pathway or service implemented within the health and social care sector

• Engaging health and care professionals in a positive and productive manner as they become increasingly busy and time-limited, allowing the identification of specific problems where solutions that help the health and care system improve care outcomes for patients and reduce variations in care and cost can be introduced.

Publication of findings in appropriate media, such as journal articles, press releases, white papers etc. will assist with raising awareness of and action for patient quality of life, treatment options, NHS savings and improved patient pathways, as well as other benefits as detailed in the purpose statements. Through collaborative work with public-facing teams and organisations, HSJ Information Ltd is able to support benefits more widely to the public through raising awareness of diseases in the public domain.

Action will need to be taken based on the information provided in order to create cases for change (some examples of which are covered in the case studies in the application), and implementation of benefits to health and social care.

HSJ Information Ltd works with a variety of public and healthcare-facing organisations, from charities, private sector organisations and the government, depending on the project, to raise awareness of the benefits of analysis, and implementation of benefit-yielding opportunities. HSJ Information Ltd publishes white papers and other relevant outputs in the public domain, working with media organisations where appropriate to raise awareness of benefits and show findings to a wide range of stakeholders, be it patients, clinicians, operational teams or the wider public. Some efforts including publications are detailed yielded and future benefits section, this work has been done alongside relevant partners such as charities or clinicians where appropriate to the project, aiding in higher awareness and attention.

Benefits reported so far

Yielded benefits identified using the data provided by NHS England in previous iterations of the data sharing agreement included:

• Data-driven dashboard, Parkinsons UK

• Impact of Depression Tool

• CVD Heart Valve Disease Report and Presentation

• Client & GP Federation Partnership

• MS Emergency Admissions

• Diabetes Health Economy Tool

• Cardiac Devices Grift Region Tool

• Iron Deficiency Anaemia (IDA)

• Impart of Ethnicity on Cancer Patients in England

• Metastatic Breast Cancer Publication

However, over the past 12 months the data has provided the following yielded benefits.

The use of HES datasets has delivered measurable improvements across multiple disease areas, supporting partners in identifying inequalities, improving patient outcomes, and optimising resource use. Projects such as the AMD State of the Nation and Respiratory Disease Quantis Dashboard have provided disease-specific charities in the UK with actionable insights into hospital activity, cancelled appointments, and emergency admissions; directly informing service improvement plans within ICBs, enabling targeted interventions to reduce system burden, support earlier diagnosis, and improve equity of access for underserved populations.

Respiratory Disease Dashboard: This work done with a charity working alongside patients with lung disease provided quantification of the impact of socioeconomic deprivation and ethnicity on hospitalisation rates of patients with common respiratory conditions. The charity used the real-world data to evidence statistically significant health inequalities in respiratory disease. This work was used in discussions with NHS England to delve deeper than their usual reporting in this area and drove awareness via national press coverage using the data and insight.

The team’s real-world data collaborations have also driven service transformation and evidence-based policy development. Studies with organisations such as NHS Trusts, pharmaceutical companies, and charities have used HES data to identify drivers of avoidable admissions, strengthen business cases for specialist recruitment, and improve care pathways for people with long-term neurological conditions. Similarly, analyses for the collaborators have quantified the cost and clinical burden of diseases such as AMD, polycythaemia vera, and obstructive hypertrophic cardiomyopathy; helping the NHS better understand demand variation and plan for equitable access to innovative therapies.

Through these initiatives, the use of linked hospital data has supported system-wide improvements in care quality, efficiency, and health outcomes. The Non-Compliance RWD Study demonstrated how medication adherence impacts hospitalisation rates and service utilisation among elderly patients with long-term conditions, providing a foundation for digital interventions to improve compliance and safety. Meanwhile, projects such as Impact of Obesity Quantis have modelled the cost of obesity-related comorbidities to inform commissioning decisions and preventative health strategies. Collectively, these studies show how HES-derived insights are directly influencing NHS policy, workforce planning, and clinical service redesign to deliver measurable, real-world benefits for patients and health systems alike.

Datasets on the current version

Legal basis for provision: Health and Social Care Act 2012 – s261(2)(a)

Datasets approved under DARS-NIC-16016-Y9H1D-v15.11
Dataset	Type of data	Sensitivity	Frequency	Confidential data
Bridge file: Hospital Episode Statistics to Diagnostic Imaging Dataset	Anonymised - ICO Code Compliant	Non-Sensitive	Ongoing	Does not include the flow of confidential data
Diagnostic Imaging Data Set (DID)	Anonymised - ICO Code Compliant	Non-Sensitive	Ongoing	Does not include the flow of confidential data
Emergency Care Data Set (ECDS)	Anonymised - ICO Code Compliant	Non-Sensitive	Ongoing	Does not include the flow of confidential data
HES-ID to MPS-ID HES Admitted Patient Care	Anonymised - ICO Code Compliant	Non-Sensitive	One-Off	Does not include the flow of confidential data
HES-ID to MPS-ID HES Outpatients	Anonymised - ICO Code Compliant	Non-Sensitive	One-Off	Does not include the flow of confidential data
Hospital Episode Statistics Accident and Emergency (HES A and E)	Anonymised - ICO Code Compliant	Non-Sensitive	Ongoing	Does not include the flow of confidential data
Hospital Episode Statistics Admitted Patient Care (HES APC)	Anonymised - ICO Code Compliant	Non-Sensitive	Ongoing	Does not include the flow of confidential data
Hospital Episode Statistics Critical Care (HES Critical Care)	Anonymised - ICO Code Compliant	Non-Sensitive	Ongoing	Does not include the flow of confidential data
Hospital Episode Statistics Outpatients (HES OP)	Anonymised - ICO Code Compliant	Non-Sensitive	Ongoing	Does not include the flow of confidential data
Mental Health and Learning Disabilities Data Set (MHLDDS)	Anonymised - ICO Code Compliant	Sensitive	One-Off	Does not include the flow of confidential data
Mental Health Services Data Set (MHSDS)	Anonymised - ICO Code Compliant	Sensitive	Ongoing	Does not include the flow of confidential data

Files released

Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.

Patient opt-outs were not applied to any of the 653 files released under this agreement, across every version. About opt-outs

Files released against version 15.11 of this agreement, summarised by dataset.

Files released under DARS-NIC-16016-Y9H1D-v15.11
Dataset	Files	First released	Last released	Opt-outs applied
Mental Health Services Data Set (MHSDS)	84	May 2026	June 2026	No
Diagnostic Imaging Data Set (DID)	5	April 2026	August 2026	No
Emergency Care Data Set (ECDS)	5	April 2026	August 2026	No
Hospital Episode Statistics Admitted Patient Care (HES APC)	5	April 2026	August 2026	No
Hospital Episode Statistics Critical Care (HES Critical Care)	5	April 2026	August 2026	No
Hospital Episode Statistics Outpatients (HES OP)	5	April 2026	August 2026	No

Version history

The register lists each renewal of this agreement as a separate row. This site has 8 versions — earlier versions existed before this site's records begin.

DARS-NIC-16016-Y9H1D-v15.11 4 March 2026 to 17 December 2026

Title: Hospital Episode Statistics (HES), ECDS, Diagnostic Imaging Dataset (DIDs) and sensitive Mental Health data to assist disease awareness, commissioning, and help to produce longitudinal rare disease analysis and reports
Commercial: Yes
Sublicensing: No
Datasets: 11
Files released: 109

Datasets: Bridge file: Hospital Episode Statistics to Diagnostic Imaging Dataset; Diagnostic Imaging Data Set (DID); Emergency Care Data Set (ECDS); HES-ID to MPS-ID HES Admitted Patient Care; HES-ID to MPS-ID HES Outpatients; Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care); Hospital Episode Statistics Outpatients (HES OP); Mental Health and Learning Disabilities Data Set (MHLDDS); Mental Health Services Data Set (MHSDS)

What changed from DARS-NIC-16016-Y9H1D-v14.2

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

Fields changed from DARS-NIC-16016-Y9H1D-v14.2
Field	Was	Became
Applicant organisation	~~WILMINGTON HEALTHCARE~~	HSJ INFORMATION LTD
Organisation type	~~Private Healthcare~~	Non NHS Provider
Start date	~~2023-12-18~~	2026-03-04

Data controllers: + HSJ INFORMATION LTD · ~~− WILMINGTON HEALTHCARE~~

Objective for processing

~~Wilmington Healthcare Ltd~~ HSJ Information Ltd. requires access to NHS England Data for the purposes of: [8 paragraphs unchanged] ~~Wilmington Healthcare Ltd~~ HSJ Information Ltd. do not specifically look at anything directly with GIRFT, however, they have [13 words unchanged] variation to benchmarks and opportunities for comparison with trusts in these areas. ~~Wilmington Healthcare Ltd~~ HSJ Information Ltd. has also looked at measures available in HES that are also talked about under GIRFT programmes, (e.g. procedures) again not specifically with GIRFT. [14 paragraphs unchanged] Projects range across therapy areas and patient settings, therefore data across ECDS and HES is necessary to ensure that ~~Wilmington Healthcare Ltd~~ HSJ Information Ltd. and its partners can analyse a full patient pathway and visualise how [49 words unchanged] how those patient cohorts interact with the various areas of the system. ~~Wilmington Healthcare Ltd~~ HSJ Information Ltd. undertakes numerous projects utilising NHS England Data on a yearly or one-off basis. Insights including HES Data contain Quantis outputs. [4 paragraphs unchanged] Each user organisation agrees a contract with ~~Wilmington Healthcare Ltd~~ HSJ Information Ltd. stipulating Terms and Conditions (T&Cs). This contract provides additional safeguards clearly explaining [9 words unchanged] the data it contains. The agreement contains but is not limited to: [4 paragraphs unchanged] • ~~Wilmington Healthcare Ltd~~ HSJ Information Ltd. Customer Service team are responsible for user management, with the organisation’s commitment, all existing leavers and removing from the Quantis system [11 paragraphs unchanged] For point 3 above, 10 years of data are required as ~~Wilmington Healthcare Ltd~~ HSJ Information Ltd. undertakes projects for rare disease studies, where a specific diagnosis for that [32 words unchanged] have a rare condition for them to be tested and treated appropriately. ~~Wilmington Health~~ HSJ Information Ltd. require these 10 years of Data as these conditions impact less than [8 words unchanged] time is necessary to develop a robust cohort of patients for analysis. Data is minimised by ~~Wilmington Healthcare Ltd~~ HSJ Information Ltd. on a project-by-project basis to ensure that only the appropriate fields are processed. The minimisation per use will be reviewed and approved by the ~~Wilmington Healthcare Ltd~~ HSJ Information Ltd. Advisory Board. The board contains non-commercial members of ~~Wilmington Healthcare Ltd~~ HSJ Information Ltd. staff and also lay members who asses each new project against ~~Wilmington Healthcare~~ HSJ Information Ltd’s Data Protection Impact Assessment (DPIA) and Data Sharing Agreement (DSA) to [27 words unchanged] in the public domain can be used for which they are applying. [2 paragraphs unchanged] ~~Wilmington Healthcare Ltd~~ HSJ Information Ltd. has determined the processing is necessary for its legitimate interests in being able to provide tools and services that will benefit healthcare organisations. ~~Wilmington Healthcare Ltd~~ HSJ Information Ltd. is a commercial company and charges for its services (on a profit-making [12 words unchanged] The Data to which access is requested are proportionate and necessary and ~~Wilmington Healthcare~~ HSJ Information Ltd have completed a legitimate interest assessment (LIA) and is satisfied that [15 words unchanged] would reasonably expect the processing and it would not cause unjustified harm. [3 paragraphs unchanged] Nasstar provides IT support and IT hosting services to ~~Wilmington Healthcare~~ HSJ Information Ltd and will store the Data as contracted by ~~Wilmington Healthcare~~ HSJ Information Ltd. Their primary responsibilities are to provide a dedicated infrastructure environment, desktop services and support including a 24x7 services desk. Snowflake provides Cloud services to ~~Wilmington Healthcare~~ HSJ Information Ltd. [1 paragraph unchanged] Wilmington Plc is the parent company, Wilmington Plc do not have any influence on the means of purpose for data processing, nor do their employees process the Data. Wilmington Plc are not acting in any capacity as either a Processor or a Controller. Wilmington Healthcare HSJ Information Ltd are the sole controller, it determines ~~the way~~ the data is processed, and the purposes, and administers the advisory board that reviews each project. HSJ Information Ltd is responsible for user and data management of the licenced data in line with agreement. ~~Wilmington Shared Services Ltd's primary responsibilities are to perform user and data management of the licenced data in line with agreement and control from Wilmington Healthcare Ltd.~~ Data will be accessed by substantive employees of HSJ Information Ltd. ~~Data will be accessed by substantive employees of Wilmington Healthcare Ltd and substantive employees of Wilmington Shared Services.~~

Processing activities

[1 paragraph unchanged] NHS England will provide the relevant records from the HES, ECDS, DIDS and MHSDS datasets to ~~Wilmington Healthcare~~ HSJ Information Ltd. The Data will contain no direct identifying data items. The Data [7 words unchanged] reidentified through linkage with other data in the possession of the recipient. [1 paragraph unchanged] ~~Wilmington Healthcare~~ HSJ Information Ltd provides suppressed and minimalised extracts of the data specific and minimised [59 words unchanged] for use for the intended purpose as agreed by the advisory board. The Data will be stored ~~on servers at Wilmington Healthcare Ltd and~~ only on Snowflake ~~AWS~~ AWS, going forward, and ~~Nasstar cloud servers.~~ managed directly by HSJ information’s internal teams. ~~Wilmington Healthcare Ltd uses offsite backup servers provided by Nasstar.~~ There is no separate HSJ backup of this data outside the Snowflake environment. The Data will be accessed at ~~Wilmington Healthcare Ltd/Shared Services~~ HSJ Information Ltd's premises or via remote access by authorised personnel only. ~~Wilmington Healthcare~~ HSJ Information Ltd must confirm and provide evidence upon audit by NHS England that [8 words unchanged] data security obligations within this DSA and the Data Sharing Framework Contract. [9 paragraphs unchanged] Access is restricted to employees or agents of ~~Wilmington Healthcare~~ HSJ Information Ltd restricted to individuals from the following teams, who have authorisation from the Data Custodian for the following purposes: [4 paragraphs unchanged] All such individuals are substantive employees of ~~Wilmington Healthcare~~ HSJ Information Ltd ~~or Wilmington Shared Services~~ and have been appropriately trained in data protection, confidentiality, and disclosure control and have undertaken and passed additional training certification which is renewed annually. [2 paragraphs unchanged] Substantive employees of ~~Wilmington Healthcare~~ HSJ Information Ltd ~~or Wilmington Shared Services~~ will load the files received directly from NHS England and warehouse that data in secure environments. The analyst team aggregate the data with suppression rules applied to show different measures against different dimensions within the HES data sets according to the ~~Wilmington Healthcare~~ HSJ Information Ltd advisory board approved purpose statement and approved data sources of the project they are working on.

Expected output

[1 paragraph unchanged] • Recommendations on how to achieve an overall improvement in patient outcomes, [5 words unchanged] Length of Stay (LOS), and hospital-acquired infection. Upon the implementation of recommendations, ~~Wilmington~~ HSJ Information Ltd would expect there to be benefits to the provision of health and social care. [2 paragraphs unchanged] The above three outputs are more generalised outputs aligned to ~~Wilmington Healthcare~~ HSJ Information Ltd overall ~~purpose,these~~ purpose, these outputs could take the form of Reports, Tabulations or Dashboards. [5 paragraphs unchanged] ~~Wilmington Healthcare~~ HSJ Information Ltd undertakes numerous projects utilising NHS England data on a yearly or one-off basis. These outputs include: [17 paragraphs unchanged] Examples of outputs produced using NHS England data by ~~Wilmington Healthcare~~ HSJ Information Ltd, with case studies published online: • DISEASE INSIGHT REPORTS: ~~Wilmington Healthcare~~ HSJ Information Ltd, in conjunction with the Multiple Sclerosis Trust (MS Trust) have published [45 words unchanged] Neurology. All disease insight reports are made available to the general public • NIEMANN- PICK C (NPC) ALGORITHM: ~~Wilmington Healthcare~~ HSJ Information Ltd has produced an algorithm that is used to search HES data [119 words unchanged] search for patients with a high suspicion of a diagnosis of NPC. • DATA-DRIVEN DASHBOARD, PARKINSON’s UK: ~~Wilmington Healthcare~~ HSJ Information Ltd has worked in conjunction with Parkinson’s UK to build a data-driven dashboard that aims to enable individual CCGs to understand their performance in Parkinson’s management. • IMPACT OF DEPRESSION TOOL: A Client commissioned ~~Wilmington Healthcare~~ HSJ Information Ltd to produce an Impact of Depression tool to better understand the [17 words unchanged] valuable insights into the use of mental health services across the UK. • SECONDARY PROGRESSIVE MULTIPLE SCLEROSIS (SPMS) IMPACT REPORT: In 2019 ~~Wilmington Healthcare~~ HSJ Information Ltd produced an SPMS impact report to raise awareness of the impact [67 words unchanged] need for comprehensive health needs assessment in patients with conditions like MS. ~~Wilmington Healthcare~~ HSJ Information Ltd has held an MS nurse advisory board to help understand the [13 words unchanged] has been supplied to nurses to support service change and pathway development. •CVD HEART VALVE DISEASE REPORT AND PRESENTATION: In partnership with the charity Heart Valve Voice and an expert clinical stakeholder ~~group Wilmington Healthcare~~ group, HSJ Information Ltd developed an optimal pathway ‘Malcolm’s story’ using the Right Care methodology [92 words unchanged] the King's Fund and the British Cardiovascular Society Annual Conference in Manchester. • CLIENT & GP FEDERATION PARTNERSHIP: A Client of ~~Wilmington~~ HSJ Information Ltd were approached by the Lead for a large GP Federation, who was [11 words unchanged] wound care patients. The Client used the dashboard, which was developed by ~~Wilmington Healthcare~~ HSJ Information Ltd, to highlight how many of their patients were accessing unplanned care services for two main areas, Lower Limb Ulcer and Cellulitis • NTM LUNG DISEASE (NTM-LD) AND NON-CYSTIC FIBROSIS BRONCHIECTASIS: ~~Wilmington Healthcare Ltd~~ HSJ Information Ltd have provided their client with tabulations that compile a range of [65 words unchanged] of a service to specifically help a small but vulnerable patient population. [1 paragraph unchanged] HEART FAILURE DATA MAPS: A Client of ~~Wilmington Healthcare~~ HSJ Information Ltd developed the Heart Failure Data Map. To support this work ~~Wilmington Healthcare~~ HSJ Information Ltd provided the data for this resource, including population projections, a granular [44 words unchanged] number of deaths in a particular area based on its population size. BLOOD CANCER DASHBOARD: A client of ~~Wilmington Healthcare~~ HSJ Information Ltd developed the Blood Cancer Dashboard. To support the client in keeping the resource as up-to-date as possible, ~~Wilmington Healthcare~~ HSJ Information Ltd has recently provided hospital episode statistics (HES) to include on the [33 words unchanged] to be compared with admissions for the UK’s four most common cancers. [1 paragraph unchanged] DIABETES HEALTH ECONOMY TOOL: A client and ~~Wilmington~~ HSJ Information Ltd developed a diabetes dashboard system, highlighting variation in metrics such as non-elective [72 words unchanged] successful in receiving funding and recruiting into a substantive band 7 post. CHRONIC KIDNEY DISEASE (CKD)REPORT : Published in October 2020, in partnership with Kidney Care UK and an expert clinical stakeholder group ~~Wilmington Healthcare~~ HSJ Information Ltd, developed an optimal pathway ‘Sid’s story’ using the Right Care methodology [60 words unchanged] to improve care and reduce the risks for patients systematically and efficiently. DIABETES DASHBOARD: A user team have successfully integrated a Quantis diabetes dashboard [37 words unchanged] the data analysis, this partnership has been established for over 5 years. ~~Wilmington Healthcare~~ HSJ Information Ltd has developed this support by adding an Inequalities analysis to support [23 words unchanged] experience higher than average levels of Diabetes and as such poorer outcomes. IRON DEFICIENCY ANAEMIA (IDA) DASHBOARDS: ~~Wilmington~~ HSJ Information Ltd collaborated with a life science industry partner to create a set of [64 words unchanged] sub-national health systems where performance can be improved with modified treatment pathways. [5 paragraphs unchanged] PRIMARY BILLIARY CIRRHOSIS (PBC) AND FOLLICULAR LYMPHOMA DISEASE INSIGHT REPORT: (Expected Autumn 2023) ~~Wilmington Healthcare~~ HSJ Information Ltd is producing a disease insight report that will be used to [56 words unchanged] to make suggestions on how to improve care across the patient pathway. MITRAL VALVE DISEASE (Expected Autumn 2023): ~~Wilmington Healthcare~~ HSJ Information Ltd is looking at the variation between sub-optimal and optimal pathways and [39 words unchanged] will enable more patients to be treated and have better health outcomes. ~~Wilmington Healthcare~~ HSJ Information Ltd are developing a realistic patient scenario to show the difference between [41 words unchanged] these patients and gain consensus around how those patients should be treated. MITRAL REGURGITATION (MR) AND TRICUSPID REGURGITATION (TR) REPORT (Expected Autumn 2023): ~~Wilmington Healthcare~~ HSJ Information Ltd is assessing the burden of Mitral Regurgitation (MR) and Tricuspid Regurgitation [91 words unchanged] in order for NHS services to be commissioned to meet patient demand

Expected measurable benefits

It is not possible to provide full details of all expected measurable benefits and timings because many of the projects on which ~~Wilmington Healthcare~~ HSJ Information Ltd will use NHS England Data have not yet been tendered. ~~Wilmington Healthcare~~ HSJ Information Ltd works on multiple projects, at short notice, for a large number of different national, regional and local organisations. Nevertheless, ~~Wilmington Healthcare~~ HSJ Information Ltd expects to benefit the provision of health and social care through their work, with a particular focus on: [16 paragraphs unchanged] Publication of findings in appropriate media, such as journal articles, press releases, [31 words unchanged] in the purpose statements. Through collaborative work with public-facing teams and organisations, ~~Wilmington Healthcare~~ HSJ Information Ltd is able to support benefits more widely to the public through raising awareness of diseases in the public domain. [1 paragraph unchanged] ~~Wilmington Healthcare~~ HSJ Information Ltd works with a variety of public and healthcare-facing organisations, from charities, [11 words unchanged] raise awareness of the benefits of analysis, and implementation of benefit-yielding opportunities. ~~Wilmington~~ HSJ Information Ltd publishes white papers and other relevant outputs in the public domain, working [52 words unchanged] clinicians where appropriate to the project, aiding in higher awareness and attention.

Benefits reported

~~DATA-DRIVEN DASHBOARD, PARKINSONS UK:~~ Yielded benefits identified using the data provided by NHS England in previous iterations of the data sharing agreement included: The Parkinson's team have worked with South Tees using the dashboard data to justify ongoing service investment and identify areas for improvement. They established a rapid-access, community-based unit with a mix of medical, nursing, therapist, and mental health services to address complex issues. The unit benchmarked hospital admissions and prescribing costs and demonstrated significant cost savings to the local CCGs. As a result, they have a fully commissioned Parkinson's Advanced Symptoms Unit that is cost-effective and delivers excellent outcomes for patients and carers. • Data-driven dashboard, Parkinsons UK ~~IMPACT OF DEPRESSION TOOL~~ • Impact of Depression Tool Depression is costly to the NHS and healthcare system, particularly in acute trusts not covered by block contracts. For many patients with depression specialist mental health services could be better managed in primary care. The tool was used to support the Mental Health Lead for the GP federation in Northampton and stakeholders to make a case for change to improve depression management. Data showed that most costs related to depression were due to acute trust activity, especially for patients with comorbid long-term conditions. The case for change led to the prioritisation of depression locally and the subsequent development and implementation of an Integrated Depression Pathway which has led to an increase in the number of patients accessing social prescribing and receiving treatment in line with NICE recommendations. • CVD Heart Valve Disease Report and Presentation ~~CVD HEART VALVE DISEASE REPORT AND PRESENTATION:~~ • Client & GP Federation Partnership Data analysis carried out to support the creation of an optimal care pathway showed that patients who received intervention from a catheter-inserted heart valve benefitted from improved quality of life, whilst saving the NHS £20,000 per patient, which could then be reallocated to other areas. Cost savings can be reallocated to the specific department where savings are made, which may fund workforce or additional equipment such as specialised equipment or beds, depending on the requirements of the organisation making the savings. • MS Emergency Admissions ~~CLIENT & GP FEDERATION PARTNERSHIP:~~ • Diabetes Health Economy Tool The data presented within this Dashboard caused concern, leading to a care audit highlighting the number of people who had been diagnosed with a wound infection. Subsequent to this 3 months of training and education events took place, and the data was again used to highlight which areas should be prioritised. Data was used with administration staff so they could take steps to ensure any future issues were highlighted and addressed. • Cardiac Devices Grift Region Tool In addition, a series of Health Promotion initiatives were introduced, such as patient leaflets, posters and drop-in clinics that patients could access during surgeries. Forward 12 months from the comprehensive training programme that was initiated to the next annual data set. The data showed a marked drop in the number of wound care patients accessing unplanned care services. Overall, within the Federation numbers are down by 30%, with some practices achieving much higher numbers. • Iron Deficiency Anaemia (IDA) ~~MS EMERGENCY ADMISSIONS:~~ • Impart of Ethnicity on Cancer Patients in England This work revealed that the main reason for emergency admission in MS patients is Urinary Tract Infections. These admissions are estimated to cost over £40 Million per year (this takes into account the cost to the NHS of the UTIs in this patient cohort). This information was used as part of a business case for a portable bladder scanner. Since this time there has been a reduction in UTI emergency admissions, by around 2000 spells a year, saving patients and their families the distress of a hospital stay. • Metastatic Breast Cancer Publication ~~DIABETES HEALTH ECONOMY TOOL:~~ However, over the past 12 months the data has provided the following yielded benefits. A client and Wilmington developed a diabetes dashboard system, highlighting variation in metrics such as non-elective admissions in diabetic patients, as well as understanding how related diabetic co-morbidities such as hypoglycaemia can affect hospital admissions. The outputs from these dashboards were used to support the case for a band 7 diabetic specialist nurse, and recently have been successful in receiving funding and recruiting into a substantive band 7 post. The use of HES datasets has delivered measurable improvements across multiple disease areas, supporting partners in identifying inequalities, improving patient outcomes, and optimising resource use. Projects such as the AMD State of the Nation and Respiratory Disease Quantis Dashboard have provided disease-specific charities in the UK with actionable insights into hospital activity, cancelled appointments, and emergency admissions; directly informing service improvement plans within ICBs, enabling targeted interventions to reduce system burden, support earlier diagnosis, and improve equity of access for underserved populations. ~~CARDIAC DEVICES GIRFT REGION TOOL:~~ Respiratory Disease Dashboard: This work done with a charity working alongside patients with lung disease provided quantification of the impact of socioeconomic deprivation and ethnicity on hospitalisation rates of patients with common respiratory conditions. The charity used the real-world data to evidence statistically significant health inequalities in respiratory disease. This work was used in discussions with NHS England to delve deeper than their usual reporting in this area and drove awareness via national press coverage using the data and insight. An NHS client of Wilmington Healthcare Ltd developed a data tool to support with work they are doing with a Cardiac Provider Collaborative in South London. The tool enabled and supported the clinical council to understand, quantify and then drive down unwarranted variation and create savings. The outcome of the clinical council is projected to be £1.3 million of savings per year which can be utilised for bettering outcomes of patients in the system. Feedback from a member of the clinical council includes "HES data was one of the fundamental data sets for the cardiac clinical council, and ultimately on what its successful outcome was based". These savings can be reinvested in optimal care pathways for patients at the provider organisations, the money saved is more efficiently used by the trusts for both workforce investment and specialist equipment provision. Savings, where there is a deficit already existing, will also be absorbed to continue the provision of services to existing patients. The team’s real-world data collaborations have also driven service transformation and evidence-based policy development. Studies with organisations such as NHS Trusts, pharmaceutical companies, and charities have used HES data to identify drivers of avoidable admissions, strengthen business cases for specialist recruitment, and improve care pathways for people with long-term neurological conditions. Similarly, analyses for the collaborators have quantified the cost and clinical burden of diseases such as AMD, polycythaemia vera, and obstructive hypertrophic cardiomyopathy; helping the NHS better understand demand variation and plan for equitable access to innovative therapies. ~~IRON DEFICIENCY ANAEMIA (IDA)~~ Through these initiatives, the use of linked hospital data has supported system-wide improvements in care quality, efficiency, and health outcomes. The Non-Compliance RWD Study demonstrated how medication adherence impacts hospitalisation rates and service utilisation among elderly patients with long-term conditions, providing a foundation for digital interventions to improve compliance and safety. Meanwhile, projects such as Impact of Obesity Quantis have modelled the cost of obesity-related comorbidities to inform commissioning decisions and preventative health strategies. Collectively, these studies show how HES-derived insights are directly influencing NHS policy, workforce planning, and clinical service redesign to deliver measurable, real-world benefits for patients and health systems alike. Clinical management of IDA prior to high blood loss surgery is critical to ensure timely patient discharge and robust patient outcomes. There is significant variation at a sub-national/trust level with respect to patient monitoring prior to surgery. Sub-optimal diagnosis and/or intervention in patients with IDA can have consequences with respect to their outcomes and utilisation of health system resources. By facilitating engagement with areas that have the potential to improve their surgical pathways, the tool is designed to reduce disparity in surgical pathways where IDA diagnosis/intervention has an impact on patient lives. Through the use of our engagement tool, our client has been able to drive awareness around the clinical management of IDA in surgical pathways, ensuring that these pathways are optimised across the healthcare system in England, and improving patient outcomes in areas where the presence of IDA in patients undergoing high blood loss surgery continues to have an impact. ~~IMPACT OF ETHNICITY ON CANCER PATIENTS IN ENGLAND~~ A client of Wilmington Healthcare Ltd produced a research article to highlight and explore the links between ethnicity and cancer care using the output Wilmington Healthcare Ltd had provided the client using HES. The client produced this research article because understanding the relationship between ethnicity and patient care for specific cancer types is vital if NHS England is to meet the UK government's priority to reduce health inequalities. The Client explored the impact of ethnicity on clinical severity, treatment costs and a range of patient activity indicators across three cancer types: chronic lymphocytic leukaemia, multiple myeloma and prostate cancer. The research article demonstrated three core findings. South Asian patients have significantly higher clinical severity (CC scores) than the population average. Black and South Asian patients have higher average treatment costs, with the effect particularly strong for Black patients. Finally, COVID-19 had a disproportionate impact on ethnic minority patients. The output of the research article highlights key issues which contribute to supporting the NHS Core 20PLUS5 strategy and adds HES-driven evidence to the inequalities conversation. ~~IMPACT OF DEPRESSION TOOL~~ The IoD tool is helping a Wilmington client enable local health systems to understand the impact of depression through the display of HES Data and allow comparison against similar systems across England. This is informing ICSs to prioritise depression services and better care pathways ‘beyond IAPT’ to support improved integrated care across the spectrum of patient severity. Market Access teams are working alongside local ICS commissioners to identify and effect positive changes to reduce the financial and clinical Impact of Depression on local services. Where depression/depressive disorder is coded, there is a huge impact on resources and capacity within acute care, raising the question as to whether there should be services in place to better manage depression in admitted patient care. The analysis Wilmington Healthcare Ltd has provided has provided a great means for the client to help drive significant change and increased collaboration with ICSs. ~~METASTATIC BREAST CANCER PUBLICATION~~ Partnering with a Consultant Oncologist from the Clatterbridge Cancer Centre, Wilmington Healthcare Ltd has contributed to a publication “Estimated Prevalence of Metastatic Breast Cancer in England 2016-2021”. Record collection currently focuses around deaths from cancer, while often overlooking those surviving and living with breast cancer. Given the unknown number, the publication aims to ascertain the prevalence of people living with breast cancer. The publication estimated the number of people living with metastatic breast cancer in England, how this figure had changed over the previous five years, and the level of clinical activity created in the treatment and care of these people. The findings highlight that these numbers have increased steadily over the previous five years. Overall, the number of hospital spells, an indication of activity in hospitals for these patients, also increased over the five years. The outputs from the publication were commented on by the Chief Executive of Breast Cancer Now, stating that the estimate of people living with breast cancer in England is a landmark moment in understanding the true number of people living with secondary breast cancer in England. The estimate indicated that there are more people living with secondary breast cancer than the previous gross underestimate of the whole of the UK. The estimate supports the value of the NHS Funded metastatic breast cancer audit which will help support the NHS to design and plan services in an informed way.

DARS-NIC-16016-Y9H1D-v14.2 18 December 2023 to 17 December 2026

Title: Hospital Episode Statistics (HES), ECDS, Diagnostic Imaging Dataset (DIDs) and sensitive Mental Health data to assist disease awareness, commissioning, and help to produce longitudinal rare disease analysis and reports
Commercial: Yes
Sublicensing: No
Datasets: 11
Files released: 195

What changed from DARS-NIC-16016-Y9H1D-v13.2

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

Fields changed from DARS-NIC-16016-Y9H1D-v13.2
Field	Was	Became
Start date	~~2023-08-30~~	2023-12-18
End date	~~2023-11-29~~	2026-12-17
Bridge file: Hospital Episode Statistics to Diagnostic Imaging Dataset: legal basis	~~Health and Social Care Act 2012 – s261(2)(a)~~	Not stated

Objective for processing

~~Wilmington Healthcare works across the healthcare community, including local and national NHS organisations and the private, pharma and third sectors.~~ Wilmington Healthcare Ltd requires access to NHS England Data for the purposes of: The Data requested is necessary for the purposes of the legitimate interests pursued by the controller, except where such interests are overridden by the interests or fundamental rights and freedoms of the data subject which require protection of personal data, in particular where the data subject is a child covered by Article 6 (1)(f) of GDPR). Wilmington Healthcare Ltd is a commercial company and charges for its services (on a profit making basis) to specifically provide services to benefit NHS health and social care. The Data to which access is requested are proportionate and necessary and Wilmington Healthcare have completed a legitimate interest’s assessment (LIA) and are satisfied that the interests of the data subjects do not override their legitimate interests; that they would reasonably expect the processing and it would not cause unjustified harm. The data subjects’ interests and fundamental rights are protected through appropriate minimisation of fields and patient records being processed; pseudonymisation to minimise any risk of identifying individuals; protection of the data in a secure environment, and guaranteeing secure destruction at any stage at the request of NHS England or after a defined period on completion of the project. 1. Raising disease awareness, management and diagnosis through analysing data and publishing reports and tabulations which are available in the public domain. The processing of the Data is essential - without it, Wilmington would not be able to positively impact healthcare to the same extent, with case studies highlighted in the recent NHS England Clinical Review: The Impact of data release through the Data Access Request Service. The Data will be used to support the NHS either directly through the delivery of tools / tables and reports or indirectly through non-NHS organisations, where solutions are provided with the NHS as the end beneficiary. Examples of this are provided in the benefits section below. 2. Supporting the commissioning, healthcare and service improvement cycle and enhancing patient outcomes through understanding disease progression and applying it to the continual improvement of service development. The Legal basis for processing of personal data relating to patient health is under Article 9(2)(j)of the GDPR - Processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject. The data subjects’ interests and fundamental rights are protected through appropriate minimisation of fields; protection of the data in a secure environment and guaranteeing secure destruction at any stage at the request of NHS England or after a defined period on completion of the project. 3. Producing longitudinal rare disease analysis and reports that enable patients to receive the correct treatment for a condition that had not yet been diagnosed, e.g. no testing available, and no definitive diagnosis reached by the clinician. Wilmington Healthcare look to undertake projects that incorporate the Hospital Episode Statistics (HES), Emergency Care Data Set (ECDS), Mental Health Services Data Set (MHSDS) or Diagnostic Imaging Dataset (DIDs) Data with customers in the Life Sciences (pharmaceutical, medical device, bioscience), charity / not for profit / patient organisations, NHS organisations and academia. A workplan is supplied to NHS England that contains the project, details of the Data included, minimisation applied to the Data for that project along with the name of the customer and industry that they are classified within. The Data will be used to support the NHS either directly through the delivery of tools and bespoke analysis or indirectly through non-NHS organisations, where solutions are provided with the NHS as the end beneficiary. Examples of this have been provided within the Expected Measurable Benefits section of this Data Sharing Agreement (DSA). Wilmington Healthcare only provide the use of the outputs to these organisations to work with health organisations such as GPs, GP surgeries, Commissioners, Trusts (Acute and Mental Health), Area & Regional Teams, Vanguards, ICSs, Strategic Clinical Networks, Primary Care Networks (PCNs), Government & Government aligned groups, DH, NHS England, NICE and Academic Health Science Networks (AHSN), Social Care, Local Authorities, Health and Wellbeing Boards, NHS England Commissioning Support Units (CSUs), Patients and companies that specialise in providing services on behalf of the NHS, Charity and not-for-profit organisations. Data is used in 4 phases: Wilmington Healthcare will also be working in support of the delivery of New Models of Care and therefore will be required to work with customers and the new NHS bodies formed, such as the new Integrated Care Boards and Systems as well as other bodies that may form to provide support or services to these and the healthcare sector. During the analysis phase, the objectives are to: Wilmington Healthcare and Wilmington Shared Services Ltd are wholly owned subsidiaries of Wilmington Plc. Although Wilmington Plc is the parent company, Wilmington Plc do not have any influence on the means of purpose for data processing, nor do their employees process the Data. Wilmington Plc are not acting under any capacity as a either a Data Processor or Data Controller. Wilmington Healthcare are the data controller, they determine the way the data is processed, the purposes, and administer the advisory board who review each project. Wilmington Healthcare control all products produced with the Data and have the product revenue and costs going through it. Wilmington Shared Services Ltd substantively employ the central services team but do not control any products. Access to the pseudonymised, record level Data are only available for named, trained members of Wilmington Healthcare or Wilmington Shared Services Ltd staff, who are all substantively employed by either Wilmington Healthcare or Wilmington Shared Services Ltd. - Assess pathway(s) and/or organisation(s) performance against similar comparisons to understand where change could be required to achieve Quality, Innovation, Productivity and Prevention (QIPP) or Getting It Right First Time (GIRFT) planning or implement NHS long term plans/strategies. ~~The data processing Wilmington Shared Services Ltd carry out are described in the Operational Level Agreement, and include activities such as:~~ Data is not used to specifically feed into the GIRFT programme. Instead, the Data is used to look at and assess the variation in organisations' activity where there are specific GIRFT measures available in HES. For example, where there are Operating Procedure Codes Supplement (OPCS) codes mentioned in a GIRFT report, looking for those codes in the data and comparing this with activity levels and best practice to understand areas of variance, and where an organisation could focus their planning to better reach or implement GIRFT opportunities/strategies. ~~• Access control and user management to relevant data assets~~ Wilmington Healthcare Ltd do not specifically look at anything directly with GIRFT, however, they have mapped data from trust to GIRFT regions to understand where there may be variation to benchmarks and opportunities for comparison with trusts in these areas. Wilmington Healthcare Ltd has also looked at measures available in HES that are also talked about under GIRFT programmes, (e.g. procedures) again not specifically with GIRFT. ~~• Management of HES/licenced Data in line with requirements of licence agreement for Wilmington Healthcare~~ During the planning phase, the objectives are to: Wilmington Healthcare processes record level, pseudonymised, non-sensitive, non-identifiable Hospital Episode Statistics (HES), ECDS, Diagnostic Imaging Dataset (DIDs) and sensitive Mental Health Data in order to: - Communicate with all NHS stakeholders explaining the rationale for change and create engagement with users to understand their needs in the commissioning, healthcare and service improvement process. - Identify local health economies which are managing a specific disease effectively. To use this data to quantify what success will look like in terms of reduced inappropriate hospital activity and cost plus decreased comorbidity patient disease . - Apply predictive modelling where appropriate to understand the potential impact on patients plus the health and social care system by adopting a clinical pathway or service design which is optimal. During the implementation phase, the objectives are to: -Enable continual monitoring, communication and education with all NHS stakeholders as to the rationale and requirements for a new clinical pathway or service. During the review phase, the objectives are to: - Review progress frequently and make any necessary, close to real-time, changes to the pathway or service to optimise efficiency. The following NHS England Data will be accessed: • Hospital Episode Statistics (HES) Admitted Patient Care, Accident & Emergency, Critical Care, Outpatients • Emergency Care Data Set (ECDS) • Mental Health Services Data (MHSDS) • Diagnostic Imaging Data Set (DIDS) The above datasets are necessary to support a wide range of partners and engage with the NHS in a data-driven, effective and efficient way, including life science companies, charities and not-for-profit organisations, as well as the NHS itself. These projects are highly varied and therefore require a broad range of datasets to fully visualise services across the system, especially with the focus on integrated care. Projects range across therapy areas and patient settings, therefore data across ECDS and HES is necessary to ensure that Wilmington Healthcare Ltd and its partners can analyse a full patient pathway and visualise how the patient journey can interact with various areas of the system. This situational setting analysis then extends and interacts with the DIDS Set to encompass diagnostic pathways from referral and subsequent interventions and outcomes, and the MHSDS to analyse the system activity of patients with Mental Health diagnoses and how those patient cohorts interact with the various areas of the system. Wilmington Healthcare Ltd undertakes numerous projects utilising NHS England Data on a yearly or one-off basis. Insights including HES Data contain Quantis outputs. Quantis portal system is an electronic online commissioning, healthcare and service improvement support solution generating outputs that are aggregated, small number suppressed. The portal contains visualisations of data, to help translate data into a digestible format. This is particularly desired by those interacting with the data whose primary role is not data-focused. The system contains data that is minimised using the recommended guidelines and filters the data into visualisations that are easy to understand. The Quantis portal outputs are used by registered, authenticated users who have access under specific terms and conditions, over a sustained period, typically of one to two years. Recipients of the portal system are predominantly pharmaceutical companies (~75%) who use this with their healthcare provider customers, but also include charities and the NHS directly. The Quantis system is only to be provided to a restricted number of users, who have undergone and passed protocol training within one month of access being granted. Access to the portal works as follows; Each user organisation agrees a contract with Wilmington Healthcare Ltd stipulating Terms and Conditions (T&Cs). This contract provides additional safeguards clearly explaining data privacy, and acceptable use of the system and the data it contains. The agreement contains but is not limited to: • The outputs to be used exclusively for the provision of outputs to assist health and social care organisations. • The outputs are not to be used principally for commercial purpose • The same aggregated HES, Mental Health data or DIDs data outputs are to be made available, if requested, to all health and social care organisations, irrespective of their value to the company • The users of the Quantis system are provided with HES Protocol training, which is an assessment that demonstrates that users know the regulations plus T&Cs relating to the use of HES, Mental Health data or DIDs data outputs. Users are provided with secure login details (username and password) that they must authenticate to access the Quantis system. • Wilmington Healthcare Ltd Customer Service team are responsible for user management, with the organisation’s commitment, all existing leavers and removing from the Quantis system The Quanits portal outputs assist health and social care in creating and delivering the Quality, Innovation, Productivity and Prevention (QIPP) priorities, Five Year Forward View Planning, implementation of NICE Health Technology Appraisals (HTAs), Sustainability and Transformation Plans, New Models of Care and local Five Year Commissioning Plans and Joint Strategic Needs Assessment (between health and social care), optimal pathway modelling as well as GIRFT service reviews. The ability to provide feedback in relative real time on the success of a new pathway or new service is critical to the realisation of a redesign project. Monthly Data is vital to show changes at an organisational level such as Integrated Care Systems (ICSs) what is happening in their organisation and how that is changing, in as close to real-time as available. Understanding and elucidating actionable insights on challenges they meet, or impacts of service change they make, based on data, makes a stronger case for service improvement. Monthly trends are important in all stages of change – analysis, planning, implementation and review. Working with out-of-date data may mean decisions are taken without knowing the most recent situation available. The level of the Data will be: • Pseudonymised The Data will be minimised as follows: • Limited to data between 1st April 2014 to the most recently available data disseminated as per the DSA. The Data will be minimised for each use in the following ways: [2 paragraphs unchanged] 3. Produce longitudinal rare disease analysis and reports which enable patients to receive the correct treatment for a condition that had not yet been diagnosed, e.g. no testing available, no definitive diagnosis reached by the clinician. For points 1 and 2 above, outputs will only contain the most recent 5 years of data. The Data will be used to support the NHS either directly through the delivery of tools and bespoke analysis or indirectly through non-NHS organisations, where solutions are provided with the NHS as the end beneficiary. Examples of this have been provided within the Expected Measurable Benefits section of this Data Sharing Agreement (DSA). Access to the pseudonymised, record level Data are only available for named, trained members of Wilmington Healthcare or Wilmington Shared Services Ltd staff, who are all substantively employed by either Wilmington Healthcare or Wilmington Shared Services Ltd. 3. Produce longitudinal rare disease analysis and reports that enable patients to receive the correct treatment for a condition that had not yet been diagnosed, e.g. no testing available, no definitive diagnosis reached by the clinician. Wilmington Healthcare and its Commissioning Excellence directorate have provided aggregated HES Data outputs for use in report production and commissioning support. Wilmington Healthcare has used (and wishes to continue to use) record level pseudonymised: For point 3 above, 10 years of data are required as Wilmington Healthcare Ltd undertakes projects for rare disease studies, where a specific diagnosis for that condition is not available. This therefore requires detailed analysis of patient diagnoses over the 10 years to develop patterns of diagnoses/procedures for patients and create a cohort of patients most likely to have a rare condition for them to be tested and treated appropriately. ~~> Non-sensitive emergency care Data since 2019, using data from 2017/18 till current latest available releases.~~ Wilmington Health require these 10 years of Data as these conditions impact less than 5 in 10,000 patients, therefore, this length of time is necessary to develop a robust cohort of patients for analysis. ~~> Non-sensitive HES Data since 2008, using data from 2006/07 till current latest available releases.~~ Data is minimised by Wilmington Healthcare Ltd on a project-by-project basis to ensure that only the appropriate fields are processed. ~~> Non-sensitive DIDs Data since 2013, using data from 2011/12 till current latest available releases.~~ The minimisation per use will be reviewed and approved by the Wilmington Healthcare Ltd Advisory Board. The board contains non-commercial members of Wilmington Healthcare Ltd staff and also lay members who asses each new project against Wilmington Healthcare Ltd’s Data Protection Impact Assessment (DPIA) and Data Sharing Agreement (DSA) to ensure alignment and ensure no variations or new uses of the data. The advisory board asks the submitter to consider if any other data, such as data in the public domain can be used for which they are applying. ~~> Sensitive Mental Health Data and since 2013, using data from 2011/12 till current latest available releases.~~ The lawful basis for processing personal data under the UK GDPR is: Wilmington Healthcare’s outputs are not limited to any particular age, region or any other subgroup or disease risk factor. However, the HES and ECDS Data has been restricted to only the relevant fields. NHS England has applied column level minimisation to the HES and ECDS extracts; i.e. not everything available has been requested by the applicant. For instance, in the HES APC datasets diagnosis and procedure codes are available in a variety of lengths (3-character, 4-character and the codes as provider by the submitter). Wilmington Healthcare has selected only to receive one variety of these. NHS England has worked closely with the applicant throughout previous iterations of the DSA to review and advise on efforts made to reduce the number of fields selected. Data shall be minimised on a project-by-project basis to ensure that only the appropriate fields are output. Wilmington Healthcare consider the number of years, geography, other data sources and fields required for each project to minimise that shared further. Article 6(1)(f) - processing is necessary for the legitimate interests pursued by the controller or by a third party. Data has been selected after careful review of the fields requested, and that only necessary Data needed for purposes covered in this DSA are requested. Wilmington Healthcare review the Data provided and warehoused against data that is used to understand if further minimisation can be performed, ensuring requested data is adequate, relevant, and limited to what is necessary in relation to the purposes for which they are processed (data minimisation). It is deemed fields requested are required in order to provide accurate information and filter the appropriate scope of records to aggregate into outputs that contain only the relevant information. To assure this, all projects go through Wilmington Healthcare’s Advisory Board, containing lay members, who assess each new project against our NHS England DPIA and the DSA to ensure alignment and ensure no variations or new uses of the Data. Each advisory board application asks the submitter to consider if any other data, such as that in the public domain can be used to further minimise data sharing outside that required. This is further assured by assessing applications against Wilmington Healthcare's Data Protection Impact Assessment for each new project and assessing compliance against the data minimisation principle in line with UK GDPR. Wilmington Healthcare Ltd has determined the processing is necessary for its legitimate interests in being able to provide tools and services that will benefit healthcare organisations. For points 1 and 2 above, Wilmington Healthcare outputs will only contain the most recent 5 full years of Data (plus the most recent provisional Data). At the point the most recent provisional Data becomes finalised, the oldest year of Data will be removed from the outputs. Wilmington Healthcare Ltd is a commercial company and charges for its services (on a profit-making basis) to specifically provide services to benefit NHS health and social care. The Data to which access is requested are proportionate and necessary and Wilmington Healthcare Ltd have completed a legitimate interest assessment (LIA) and is satisfied that the interests of the data subjects do not override their legitimate interests; and that they would reasonably expect the processing and it would not cause unjustified harm. For point 3 above, 10 years of Data are required as Wilmington Healthcare undertakes projects for rare disease studies, where a specific diagnosis for that condition is not available. This requires detailed analysis of patient diagnoses over the period of 10 years in order to develop patterns of diagnoses / procedures for patients and create a cohort of patients most likely to have a rare condition in order for them to be tested and treated appropriately. Wilmington Health require this 10-year period of Data as these conditions impact less than 5 in 10,000 patients, therefore, this length of time is necessary to develop a robust cohort of patients for analysis. Under this DSA, only aggregated outputs with small numbers suppressed will be produced in line with HES Analysis Guidance. Anything other than this will require a separate application and DSA with NHS England . The lawful basis for processing special category data under the UK GDPR is: ~~Data is used in:~~ Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject. ~~> Analysis Phase:~~ This processing is in the public interest because the data subjects’ interests and fundamental rights are protected through appropriate minimisation of fields and patient records being processed; pseudonymisation to minimise any risk of identifying individuals; protection of the data in a secure environment, and guaranteeing secure destruction at any stage at the request of NHS England or after a defined period on completion of the project Assess (a) pathway(s) and/or organisation(s) performance against similar comparisons and to understand where change could be required to achieve Quality, Innovation, Productivity and Prevention (QIPP) or Getting It Right First Time (GIRFT) planning or implement NHS long term plans / strategies. Nasstar provides IT support and IT hosting services to Wilmington Healthcare Ltd and will store the Data as contracted by Wilmington Healthcare Ltd. Their primary responsibilities are to provide a dedicated infrastructure environment, desktop services and support including a 24x7 services desk. Data isn’t used to specifically feed into the GIRFT programme. Instead, the Data is used to look at and assess the variation in organisations' activity where there are specific GIRFT measures available in HES. For example, where there are Operating Procedure Codes Supplement (OPCS) codes mentioned in a GIRFT report, looking for those codes in the data and comparing this with activity levels and best practice to understand areas of variance, and where an organisation could focus their planning to better reach or implement GIRFT opportunities/strategies. Snowflake provides Cloud services to Wilmington Healthcare Ltd. Wilmington Health do not specifically look at anything directly with GIRFT, however have mapped data from trust to GIRFT regions to understand where there may be variation to benchmarks and opportunities for comparison with trusts in these areas. Wilmington Health have also looked at measures available in HES that are also talked about under GIRFT programmes, (e.g. procedures) again not specifically with GIRFT. Snowflake has capabilities to support the infrastructure that hosts the Data but not the permissions to access the Data. ~~> Planning Phase:~~ Wilmington Plc is the parent company, Wilmington Plc do not have any influence on the means of purpose for data processing, nor do their employees process the Data. Wilmington Plc are not acting in any capacity as either a Processor or a Controller. Wilmington Healthcare Ltd are the sole controller, it determines the way the data is processed, and the purposes, and administers the advisory board that reviews each project. Communicate with all NHS stakeholders in explaining the rationale for change and to create engagement with users to understand their needs in the commissioning, healthcare and service improvement process. Wilmington Shared Services Ltd's primary responsibilities are to perform user and data management of the licenced data in line with agreement and control from Wilmington Healthcare Ltd. Identify local health economies which are managing a specific disease effectively. To use this data to quantify what success will look like in terms of reduced inappropriate hospital activity and cost plus decreased comorbidity patient disease Data will be accessed by substantive employees of Wilmington Healthcare Ltd and substantive employees of Wilmington Shared Services. ~~Apply predictive modelling where appropriate to understand the potential impact for patients plus the health and social care system by adopting a clinical pathway or service design which is optimal.~~ ~~> Implementation Phase:~~ ~~Enable continual monitoring, communication and education with all NHS stakeholders as to the rationale and requirements for a new clinical pathway or service.~~ ~~> Review Phase:~~ ~~Review progress on a frequent basis and to make any necessary, close to real-time, changes to the pathway or service to optimise efficiency.~~ ~~Wilmington Healthcare undertake numerous projects utilising NHS England Data on a yearly or one-off bases. Insights including HES Data contain Quantis outputs.~~ Access to Wilmington Healthcare Quantis solutions that contain HES, ECDS, MHSDS or DIDs Data will be underpinned by additional terms and conditions that ensure the Data are used for the appropriate purposes, including: ~~> Where appropriate, an official NHS/industry joint working contract to be put in place.~~ ~~> The same aggregated HES, ECDS, Mental Health Data or DIDs Data outputs to be made available, if requested, to all health and social care organisations, irrespective of their value to the company~~ ~~The Quantis system is only to be provided to a restricted number of named users, who have undergone and passed protocol training within one month of access being granted.~~ ~~All named users to authenticate sign on through unique password protection.~~ ~~Life Science Companies to abide by the established Prescription Medicines Code of Practice Authority (PMCPA) Code of Practice and DH governance on the use of healthcare data.~~ These outputs assist health and social care in creating and delivering the Quality, Innovation, Productivity and Prevention (QIPP) priorities, Five Year Forward View Planning, implementation of NICE Health Technology Appraisals (HTAs), Sustainability and Transformation Plans, New Models of Care and local Five Year Commissioning Plans and Joint Strategic Needs Assessment (between health and social care), optimal pathway modelling as well as GIRFT service reviews. The ability to provide feedback in relative real time on the success of a new pathway or new service, is critical to the realisation of the redesign project. This means a monthly breakdown and routine data refresh at record level will be required. Monthly Data is vital to show changes at an organisational level such as ICSs what is happening in their organisation and how that is changing, in as close to real time as available. Understanding and elucidating actionable insights on challenges they meet, or impacts of service change they make, based off data, makes a stronger case for service improvement. Monthly trends are important in all stages of change – analysis, planning, implementation and review. Working with out-of-date data, may mean decisions are taken without knowing the most recent situation available. An example of this would be during the covid period, and through recovery, where organisations have had to rapidly reconfigure their services and some are just “keeping their head above water”, being able to identify blockers and bottle necks to services in this upheaval period can only be seen with the most recently available data, as it comes through, and alerts to future impacts can be assessed. ~~Wilmington Healthcare has complete editorial control meaning that the outputs are developed completely independently of the commissioner of the work and there is no bias in terms of the findings.~~ ~~For the avoidance of doubt, the outputs produced by Wilmington that incorporate the HES, Mental Health Data and DIDs Data supplied under this license by NHS England will not:~~ ~~• Relate HES, Mental Health Data or DIDs Data outputs to the use of commercially available products, an example being the prescribing of individual pharmaceutical products~~ ~~• Include any analysis on the impact of commercially available products an example being individual pharmaceutical product~~ ~~For Data from the Mental Health (MHSDS, MHLDDS, MHMDS) Data sets, and any Mental Health Data linked to HES or SUS, the following disclosure control rules will be applied:~~ ~~National-level figures only may be presented unrounded, with small number suppression;~~ ~~- Suppress all numbers between 1 and 7~~ ~~- Round all other numbers to the nearest 5~~ ~~Percentages can be calculated based on unrounded values, but need to be rounded to the nearest integer in any outputs.~~ In addition for Learning Disability Data in Mental Health (MHSDS, MHLDDS, MHMDS), the England-level Data also must apply the suppression of all numbers between 0 and 5, and rounding of other numbers to the nearest 5. Wilmington Healthcare requires Data from NHS England for the purposes of these legitimate interests. Processing personal data is necessary for Wilmington Healthcare’s legitimate interests which are described in this application. The Data to which access is requested are proportionate and necessary to achieve those interests. Wilmington Healthcare have completed a legitimate interest’s assessment (LIA) and are satisfied that the interests of the data subjects do not override their legitimate interests; that they would reasonably expect the processing and it would not cause unjustified harm. The data subjects interests and fundamental rights are protected through appropriate minimisation of fields and patient records being processed; pseudonymisation to minimise any risk of identifying individuals; protection of the data in a secure environment, and guaranteeing secure destruction at any stage at the request of NHS England or after a defined period on completion of the project. Wilmington Healthcare have assessed this against the ICO’s checklist (https://ico.org.uk/for-organisations/guide-to-thegeneral-data-protection-regulation-gdpr/lawful-basis-for-processing/legitimate-interests/) and are content that the requirements are met.

Processing activities

All organisations party to this DSA must 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). No data will flow to NHS England for the purposes of this Data Sharing Agreement (DSA). Wilmington Healthcare links organisation level (aggregated) Data from HES, ECDS, Mental Health Data or DIDs to publicly available data (examples of this include GP Prescribing, Quality Outcomes Framework (QOF) and Organisation Data Services (ODS) data), but only to meet the objectives listed and not for the purposes of re-identifying any individual. For clarity, no other datasets (except for those expressly permitted as part of the Data Sharing Agreement) will be linked at patient level. NHS England will provide the relevant records from the HES, ECDS, DIDS and MHSDS datasets to Wilmington Healthcare Ltd. The Data will contain no direct identifying data items. The Data will be pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient. Record level Data supplied by NHS England to Wilmington Healthcare is not supplied to third parties not mentioned in this DSA and therefore no identifiable data is either available nor can be inferred. Sensitive MHSDS is required because it helps contextualise patient journeys through the mental health care system. Pseudonymised HES, ECDS, Mental Health Data and DIDs Data are securely downloaded via the NHS England Secure Electronic File Transfer (SEFT) server and stored on a secure network drive in one location in England. Backups of this Data are stored only within the storage locations specified and supplied to NHS England during the security review of this application. Wilmington Healthcare Ltd provides suppressed and minimalised extracts of the data specific and minimised to the project specification, and of which the purpose has been signed off by the advisory board containing lay members. This data is suppressed and minimalised to the relevant disclosure rules for the dataset(s) from which the information is derived. This suppressed, minimalised data is made available via the Quantis platform or published in reports/other outputs (e.g. journal articles) for use for the intended purpose as agreed by the advisory board. Record level Data are loaded into a data warehouse, on a dedicated private server. For Quantis dashboards and other dashboard or tabulation solutions, data are aggregated in a separate database, stored independently. The final aggregated, small number suppressed; non-identifiable outputs are uploaded to professionally hosted user-facing servers in England. These professionally hosted servers are provisioned purely for hosting purposes. The hosting organisation have no access to the Data on these servers and will not process any Data for the purposes above. The Data will be stored on servers at Wilmington Healthcare Ltd and on Snowflake AWS and Nasstar cloud servers. Record level Data is stored separately to aggregated data. All pseudonymised record level Data is stored in the storage locations specified within this DSA in England, with there being no possibility of users of any solutions accessing record level Data. Wilmington Healthcare Ltd uses offsite backup servers provided by Nasstar. For Quantis augmented analytics, the system will dynamically present aggregated, small number suppressed, non-identifiable outputs in line with the HES analysis guide. The system is held entirely on the listed servers and accessed only through the secure sign-on web link. No record level Data is held on any customer’s local machine at any time, all pseudonymised record level Data is stored in the storage locations specified within this DSA, in England. All tools present only data aggregated and non-identifiable in line with the HES analysis guide. The hosting organisation have no access to the Data on these servers and will not process any Data for the purposes above. The Data will be accessed at Wilmington Healthcare Ltd/Shared Services premises or via remote access by authorised personnel only. In order to be able to accurately analyse trends in the rates of certain procedures, coding practices, complications and comorbidities along with association of changes in surgical or clinical practices over time, such Data are required. It is important to explore the demographics, population rates and any additional risk factor of patients that could have these rare diseases in order to fully investigate factors that could contribute to the appropriate diagnosis and treatment of these patients. Rare disease studies require full analyses of one or more of these aforementioned practices in order to understand which patient cohorts are most at risk of having an undiagnosed, rare disease. Symptoms and characteristics of a rare disease can only be analysed by looking over a 10-year period of time to obtain robust patterns in the diagnosis, treatment and associated complications of these patient cohorts. Without this period of Data, there is a risk that certain patient cohorts will not be put into the study and likewise, an increase in false positive may occur due to not having as fuller picture as possible to analyse. These analyses will be carried out in consultation, and often led by, a healthcare professional with expertise in the field and/or condition being explored. Wilmington Healthcare Ltd must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract. Wilmington Healthcare and Wilmington shared Service Ltd are wholly owned subsidiaries of Wilmington Plc. Access to the pseudonymised, record level Data are only available for named, trained substantive employees of Wilmington Healthcare or Wilmington Shared Services Ltd. Access will not be granted to any individual unless they need to load and maintain the dedicated data warehouse hosting this Data (which is solely to produce an output for Wilmington Healthcare, and the staff members requiring access will only be limited to those that have a need to process the Data for the Wilmington Healthcare outputs specified), for Quality Assurance, or to analyse the Data to produce the outputs specified within this DSA. For remote access: ~~Pseudonymised, non-sensitive (HES, ECDS and DIDs) and sensitive (MHSDS), nonidentifiable record level Data is required so that these named, trained staff members are able to:~~ - Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA; • Comprehend how spells break into episodes at record level, where an episode is a component of spell or stay in hospital. A spell starts with an admission to hospital and ends with a discharge. Within this, patients have one or more periods of care each under a different consultant (or consulting team), called an episode. This will enable all comorbid conditions and procedures to be rolled into aggregated, non-identifiable, patient cohorts. This allows users to analyse the existing pathway against modelled pathways in detail, to portray disease progression over time at patient cohort level, and to study the impact of disease management over time. - Access controls granting users the minimum level of access required are in place; • Establish which Healthcare Resource Group (HRG) codes are being applied to each episode in a spell at record level, prior to aggregating into user output data. This allows users to view whether a more efficient tariff or route of treatment could be used. - Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data; • Provide an aggregated way of demonstrating how the pathway, disease or service being analysed intricately fits with related/interrelated pathways. For example, in diabetes pathway and disease analysis, the areas of obesity, cardiovascular disease, ophthalmology, renal etc. will also require analysis. For each health and social care geography, interrelated pathways are different, meaning the complete spectrum of ICD10 (diagnosis), OPCS4 (procedure) and HRG codes is required. - Multifactor authentication (MFA) is required for remote access; • Analyse patient outcomes such as comorbid disease, procedures and unnecessary hospital activity (admissions, excess bed days, readmissions) at an individual level prior to aggregating into predefined cohorts for use by users in Quantis (the Modeller dashboard system allowing users to visualised healthcare data at an organisational level). - Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for remote access; • Produce a system that allows users to compare at aggregated level one organisation, geography or patient cohort against another with similar characteristics (socio, demographic and ethnicity). This allows users to understand what best practice can look like. - All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy. ~~• Quality assurance of updates or changes to outputs, and to contribute to ongoing improvement~~ The above applies in addition to any condition set out elsewhere within the DSA. ~~• To train and provide ongoing support to users~~ The Data will not leave England and Wales at any time. ~~• Assist any of the user groups in how to use and access the outputs.~~ Access is restricted to employees or agents of Wilmington Healthcare Ltd restricted to individuals from the following teams, who have authorisation from the Data Custodian for the following purposes: Access to the network drive and servers that contain the pseudonymised record level data for record level processing prior to aggregation and suppression are restricted to these named, fully trained individuals with internal audits carried out (and documented) to ensure that only the appropriate, trained personnel have access to these datasets. The Data are processed in accordance with the ISO27001:2013 accreditation that is currently certified to Wilmington Healthcare. The named, trained individuals that have access to the HES, ECDS, MHSDS and DIDs record level Data all fall within the current scope of this accreditation and have been fully audited. • The technology team for data loading and warehousing purposes. Processing can only take place by these named, trained individuals logging into a secure desktop gateway. All processing takes place by accessing the secure remote desktop that is within the secure storage environment specified within this DSA. No Data is downloaded to a local device and the aggregated, small number suppressed outputs are stored on an environment that can only be accessed via the gateway. All traffic through this gateway is encrypted to minimum 2048-bit encryption. The machines of the individuals that have access to record level Data are all encrypted with at least 256-bit encryption and password protection. Data will be not stored on any local device or machine. These individuals will process the Data either at one of the Processing locations specified within the Data Sharing Agreement or from their home. Access from home is only available through an encrypted Laptop with password protection supplied by Nasstar and through the secure desktop gateway. No processing takes place on the local machine and no Data will be downloaded to the local device. • The analyst team for processing, aggregation, and suppression purposes. All other users will receive aggregated, small number suppressed, non-identifiable data which has all suppression rules applied in line with the HES Analysis guide and the guidance within Part 2, section 3.5 of the Data Sharing Framework contract. • The delivery team for supporting partners in defining their project purposes using the most relevant datasets. ~~The processing activities carried out by Nasstar are as follows:~~ • The innovation team as data custodian. Nasstar is contracted to supply managed hosting and support services to Wilmington Healthcare. Their primary responsibilities are to provide dedicated infrastructure environment, desktop services and support including a 24x7 services desk. All Data is hosted on the dedicated infrastructure and secured utilising network separation and access control via firewalls and other security mechanisms. Nasstar have capabilities to support the infrastructure that hosts the Data but not the permissions to access the Data. All such individuals are substantive employees of Wilmington Healthcare Ltd or Wilmington Shared Services and have been appropriately trained in data protection, confidentiality, and disclosure control and have undertaken and passed additional training certification which is renewed annually. ~~Nasstar is UK based as a 3rd Party provider and admin / maintenance of servers containing the Data will be restricted to UK based personnel.~~ The Data will not be linked with any other data. ~~All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES Analysis Guide.~~ There will be no requirement and no attempt to reidentify individuals when using the Data ~~The processing activities carried out by Snowflake will be as follows:~~ Substantive employees of Wilmington Healthcare Ltd or Wilmington Shared Services will load the files received directly from NHS England and warehouse that data in secure environments. Snowflake is contracted by Wilmington Plc to supply managed cloud hosting and support services to the Wilmington group (i.e., Wilmington Plc and its subsidiaries). Their primary responsibilities are to provide dedicated cloud warehouse environment hosted within AWS Platforms on the EU-West-2 (London) region, and support including a service desk. All Data hosted on the dedicated infrastructure and secured utilising network separation and access control via firewalls and other security mechanisms. Snowflake have capabilities to support the infrastructure that hosts the Data but not the permissions to access the Data. The analyst team aggregate the data with suppression rules applied to show different measures against different dimensions within the HES data sets according to the Wilmington Healthcare Ltd advisory board approved purpose statement and approved data sources of the project they are working on. ~~Snowflake’s admin / maintenance of the cloud containing the Data will be restricted to UK based personnel.~~ ~~All final outputs from this cloud warehouse will contain only Data aggregated with small numbers suppressed in line with the HES Analysis Guide.~~

Expected output

~~OUTPUTS~~ The expected outputs of the processing will be: ~~All outputs produced by Wilmington Healthcare will be aggregated with small numbers supressed in line with HES analysis guidance and aim to:~~ • Recommendations on how to achieve an overall improvement in patient outcomes, including reduced comorbid disease, mortality, Length of Stay (LOS), and hospital-acquired infection. Upon the implementation of recommendations, Wilmington would expect there to be benefits to the provision of health and social care. • Recommend how to achieve an overall improvement in patient outcomes, including reduced comorbid disease, mortality, Length of Stay (LOS), hospital acquired infection. Upon the implementation of recommendations Wilmington would expect there to be benefits to the provision of health and social care. [1 paragraph unchanged] • Demonstrate the reduction of the patients requiring more care in social care by implementing effectively designed clinical pathways and services ~~using~~ to prevent patients from leaving healthcare and becoming a burden on social care without effective treatment The above three outputs are more generalised outputs aligned to Wilmington Healthcare Ltd overall purpose,these outputs could take the form of Reports, Tabulations or Dashboards. [1 paragraph unchanged] • ~~Present~~ Presentations to healthcare professionals of the information required to understand their own organisation’s performance to enable them to reduce cost whilst simultaneously delivering ~~best practice~~ best-practice healthcare [1 paragraph unchanged] Quantis has a growing user base, predominantly life sciences companies, but clients [8 words unchanged] increasing numbers of users benefitting from the data insight and analysis provided ~~from~~ by the system. ~~Wilmington Healthcare undertakes numerous projects utilising NHS England data on a yearly or one-off bases. These outputs include:~~ 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. Wilmington Healthcare Ltd undertakes numerous projects utilising NHS England data on a yearly or one-off basis. These outputs include: [1 paragraph unchanged] • Disease Insight Reports • Costed Integrated Pathways • Infographics • Presentations • Submissions to peer review journals [1 paragraph unchanged] ~~Excel based outputs~~ • Excel-based outputs ~~Tableau based outputs~~ • Tableau-based outputs [1 paragraph unchanged] • Quantis portal system • Online dashboards ~~Offline dashboards (MS Excel, Tableau or other BI software)~~ Other Quantis dashboards may be hosted on microsites, a small website, where the visualisation may be publicly accessible, such as for a charity website – where the purpose is to gain awareness for healthcare-related challenges and as such may be accessed by healthcare professionals or members of the public ~~Maps~~ • Offline dashboards (MS Excel, Tableau or other BI software) ~~Augmented analytics~~ • Maps Outputs typically contain analysis of a disease and/or its management, predominately in secondary care. The methodology of the analysis is based on in-house research undertaken by Wilmington Healthcare using non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable, record level data Outputs often contain patient cohort analysis which requires an aggregation of pseudonymised, non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable record level data. The ability to be able to see diagnosis, procedures and Healthcare Resource Groups (HRGs) by multiple individual episodes at record level is imperative to being able to undertake the analysis for these outputs. • Augmented analytics ~~Quantis system:~~ For Quantis augmented analytics, the system dynamically presents aggregated, small number suppressed; non-identifiable outputs in line with the HES analysis guide to a restricted number of named users, who have undergone and passed protocol training before access is granted. Outputting the data into tabulations and visualisations, minimised using the recommended guidelines Quantis portal system is an electronic online commissioning, healthcare and service improvement support solution generating outputs that are aggregated, small number suppressed in line with the HES Analysis Guide, non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable data as the outputs. The portal contains visualisations of data, to help translate data into a digestible format. This is particularly desired by those interacting with the data whose primary role is not data focused. The system contains data that is minimised using the recommended guidelines and filters the data into visualisations that are easy to understand. The Quantis portal outputs are used by registered, authenticated users who have access under specific terms and conditions, over a sustained period, typically of one to two years. Recipients of the portal system are predominantly pharmaceutical companies (~75%) who use this with their healthcare provider customers, but also include charities and the NHS directly. Examples of outputs produced using NHS England data by Wilmington Healthcare Ltd, with case studies published online: The Quantis Portal system is only provided to a restricted number of named users, who have undergone and passed protocol training within one month of access being granted. For Quantis Dashboards record level data are loaded into a data warehouse, on a dedicated private, non-external facing server, prior to aggregation into a separate database (both of which are stored independently in England). The final aggregated, small number suppressed; non-identifiable outputs are uploaded to professionally hosted user-facing servers in England. These professionally hosted servers are provisioned purely for hosting purposes. The hosting organisation have no access to the data on these servers and will not process any data for the purposes above. • DISEASE INSIGHT REPORTS: Wilmington Healthcare Ltd, in conjunction with the Multiple Sclerosis Trust (MS Trust) have published a Disease Insight Report into the burden of hospitalisations in multiple sclerosis. This provided a detailed analysis of HES data. This report was first launched at the MS Trust Annual Conference and was also shared by Public Health England and the National Clinical Director for Neurology. All disease insight reports are made available to the general public For Quantis augmented analytics, the system dynamically presents aggregated, small number suppressed; non-identifiable outputs in line with the HES analysis guide to a restricted number of named users, who have undergone and passed protocol training prior to access being granted. Outputting the data into tabulations and visualisations, minimised using the recommended guidelines. The system is held entirely on the listed servers and accessed only through the secure sign-on web link. No record level data is held on any customer’s local machine at any time, all pseudonymised record level data is stored in the storage locations specified within this DSA, in England. All tools present only data aggregated and non-identifiable in line with the HES analysis guide. The hosting organisation have no access to the data on these servers and will not process any data for the purposes above. • NIEMANN- PICK C (NPC) ALGORITHM: Wilmington Healthcare Ltd has produced an algorithm that is used to search HES data using the NPC Clinical Suspicion Index to identify patients who may have attenuated Niemann-Pick C (NPC). NPC is a neuro-visceral lipid storage disorder which causes progressive neurological disease. The disease usually starts in childhood and usually results in death in the late second or third decade from aspiration pneumonia. However, there are also many patients who have 'attenuated' forms of the disease which present later in life with some atypical clinical features and slow progression. The Suspicion Index lists the symptoms and signs of NPC. The diagnostic tool has been validated and published (Neurology 2012;78(20):1560-7). This has identified the ICD-10 codes which are associated with each symptom in the Suspicion Index and then used combinations of these codes to search for patients with a high suspicion of a diagnosis of NPC. Other Quantis dashboards may be hosted on microsites, a small website, where the visualisation may be publicly accessible, such as for a charity website – where the purpose is to gain awareness for healthcare related challenges and as such may be accessed by health care professionals or members of the public – for systems such as this record level data are loaded into a data warehouse, on a dedicated private, non-external facing server, prior to aggregation into a separate database (both of which are stored independently in England). The final aggregated, small number suppressed; non-identifiable outputs are uploaded to professionally hosted user-facing servers in England. These professionally hosted servers are provisioned purely for hosting purposes. The hosting organisation have no access to the data on these servers and will not process any data for the purposes above. • DATA-DRIVEN DASHBOARD, PARKINSON’s UK: Wilmington Healthcare Ltd has worked in conjunction with Parkinson’s UK to build a data-driven dashboard that aims to enable individual CCGs to understand their performance in Parkinson’s management. ~~For most outputs listed, Wilmington Healthcare require 5 years of pseudonymised, non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable record level data to be able to:~~ • IMPACT OF DEPRESSION TOOL: A Client commissioned Wilmington Healthcare Ltd to produce an Impact of Depression tool to better understand the use of mental health services across the UK. This tool is now in use and has provided valuable insights into the use of mental health services across the UK. • Comprehend how spells break into episodes at record level, where an episode is a component of spell, or stay in hospital. A spell starts with an admission to hospital and ends with a discharge. Within this, patients have one or more periods of care each under a different consultant (or consulting team), called an episode. To enable all comorbid conditions and procedures to be rolled into aggregated, non-identifiable, patient cohorts. This allows users to analyse the existing pathway against modelled pathways in detail, to portray disease progression over time at patient cohort level, and to study the impact of disease management over time. • SECONDARY PROGRESSIVE MULTIPLE SCLEROSIS (SPMS) IMPACT REPORT: In 2019 Wilmington Healthcare Ltd produced an SPMS impact report to raise awareness of the impact of the needs of this client group. The report will be launched in parliament and will provide recommendations for changing practices. The report contains a specific analysis of each UK-wide commissioning group/health board number of people likely to reside with the condition to enable local understanding of the condition impact and likely service requirements. Additionally, the articles have been published in a peer-reviewed journal which highlights the need for comprehensive health needs assessment in patients with conditions like MS. Wilmington Healthcare Ltd has held an MS nurse advisory board to help understand the problems nurses are facing with managing increasing caseloads within their work areas. Data has been supplied to nurses to support service change and pathway development. • Establish what HRGs are being applied to each episode in a spell at record level, prior to aggregating into user output data. This allows users to view whether a more efficient tariff or route of treatment could be used. •CVD HEART VALVE DISEASE REPORT AND PRESENTATION: In partnership with the charity Heart Valve Voice and an expert clinical stakeholder group Wilmington Healthcare Ltd developed an optimal pathway ‘Malcolm’s story’ using the Right Care methodology and a Delphi consensus process (a well-established approach to research, identifying a consensus view across subject experts which encourages reflection among participants, who share opinions and reconsider their opinion based on the anonymised opinions of others, ultimately resulting in a one consensus view) to show depict the difference between treating someone with aortic stenosis and providing palliation for heart failure. The means to develop the pathway was based on analysis of HES data for aortic stenosis comparing patient pathways and patient outcomes. The work has been presented at three national conferences including the King's Fund and the British Cardiovascular Society Annual Conference in Manchester. • Provide an aggregated way of demonstrating how the pathway, disease or service being analysed intricately fits with related/interrelated pathways. For example, in diabetes pathway and disease analysis, the areas of obesity, cardiovascular disease, ophthalmology, renal etc. will also require analysis. For each health and social care geography, interrelated pathways are different, meaning the complete spectrum of ICD10, OPCS4 and HRG codes is required. • CLIENT & GP FEDERATION PARTNERSHIP: A Client of Wilmington were approached by the Lead for a large GP Federation, who was interested in working to improve the overall service given to their wound care patients. The Client used the dashboard, which was developed by Wilmington Healthcare Ltd, to highlight how many of their patients were accessing unplanned care services for two main areas, Lower Limb Ulcer and Cellulitis • Analyse patient outcomes such as comorbid disease, procedures and unnecessary hospital activity (admissions, excess bed days, readmissions) at an individual level prior to aggregating into predefined cohorts. • NTM LUNG DISEASE (NTM-LD) AND NON-CYSTIC FIBROSIS BRONCHIECTASIS: Wilmington Healthcare Ltd Ltd have provided their client with tabulations that compile a range of HES data for NTM Lung disease (NTM-LD) and Non Cystic fibrosis Bronchiectasis, allowing the costs and activity associated with depression to be understood. Working with opinion leaders in rare respiratory disease the tabulations have been used to better understand the geographical spread of NTM-LD, an orphan respiratory disease. This in turn has been helpful in the design of an optimal patient pathway and the design of a service to specifically help a small but vulnerable patient population. • Produce a system that allows users to compare at aggregated level one organisation, geography or patient cohort against another with similar characteristics (socio, demographic and ethnicity). This allows users to understand what best practice can look like. IDA AND HYPERKALAEMIA DASHBOARD: a resource that compiles a range of NHS England activity data for patients with IDA and Hyperkalaemia, with and without concurrent comorbidities, allowing the activity and resource impact associated with each condition to be better understood. The data has been shared in easy-to-use dashboards – which present data from a range of perspectives – key for understanding and changing service to better meet patient need; comparing elective v non-elective stays, cost, LOS, readmission rates etc. for patients with and without the condition, undergoing surgery and with a range of long term conditions. However, 10 years of data are required as Wilmington Healthcare undertakes projects for rare disease studies, where a specific diagnosis for that condition is not available. Wilmington Healthcare require this 10-year period of data as these conditions impact less than 5 in 10,000 patients, therefore, this length of time is necessary to develop a robust cohort of patients for analysis. HEART FAILURE DATA MAPS: A Client of Wilmington Healthcare Ltd developed the Heart Failure Data Map. To support this work Wilmington Healthcare Ltd provided the data for this resource, including population projections, a granular breakdown of hospital admissions and costs (by scheduled and emergency admissions, sex, and age), as well as how admission rates have increased or decreased over time. Finally, a total mortality figure and mortality indicator value are provided for each area, which provides an estimated number of deaths in a particular area based on its population size. Before Wilmington Healthcare sign any terms and conditions for outputs that contain HES, Mental Health data or DIDs data, the purpose for the output is reviewed by the internal advisory board. The advisory board assess the potential for each project to benefit the health and social care sector before approving. The advisory board includes independent lay members. BLOOD CANCER DASHBOARD: A client of Wilmington Healthcare Ltd developed the Blood Cancer Dashboard. To support the client in keeping the resource as up-to-date as possible, Wilmington Healthcare Ltd has recently provided hospital episode statistics (HES) to include on the Blood Cancer Dashboard in a new ‘hospital admissions’ tab. This data provides more detailed information on elective and non-elective admissions and readmissions across individual blood cancers and for blood cancers as a group, to be compared with admissions for the UK’s four most common cancers. ~~For the Quantis portal system, access works as follows:~~ DEMENTIA PATHWAY TOOLKIT: In partnership with the University of Manchester Institute of the Brain, the Dementia Academy, and NHS England Greater Manchester Network a piece of work was required to enable understanding of which patient pathways should change to address common issues relating to emergency hospital admissions. The data has spearheaded the development of a multidisciplinary, multi-agency integrated dementia pathway toolkit which highlights trigger factors for GPs, that might precipitate hospital admission so that these can be avoided. Patients and carers were central to the production of the work along organisations including Greater Manchester Police, ambulance service and voluntary sectors. All 12 CCGs in the area have participated and service transformation is underway. The findings have also been shared with other health economies. Each user organisation agrees a contract with Wilmington Healthcare stipulating Terms and Conditions (T&Cs) as specified within the Objective for Processing (5a) section. This contract provides additional safeguards clearly explaining data privacy, and acceptable use of the system and the data it contains. The agreement contains but is not limited to: DIABETES HEALTH ECONOMY TOOL: A client and Wilmington developed a diabetes dashboard system, highlighting variation in metrics such as non-elective admissions in diabetic patients, as well as understanding how related diabetic co-morbidities such as hypoglycaemia can affect hospital admissions. The dashboards are supported by other data sources such as the National Diabetes Audit (NDA) to minimise the HES data used and give a primary/secondary care view for the business case. The outputs from these dashboards were used to support the case for a band 7 diabetic specialist nurse, and recently have been successful in receiving funding and recruiting into a substantive band 7 post. ~~The outputs to be used exclusively for the purpose of provision of outputs to assist health and social care organisations.~~ CHRONIC KIDNEY DISEASE (CKD)REPORT : Published in October 2020, in partnership with Kidney Care UK and an expert clinical stakeholder group Wilmington Healthcare Ltd, developed an optimal pathway ‘Sid’s story’ using the Right Care methodology and a Delphi consensus process to provide clarity on the issues faced in managing CKD when dialysis has to be the modality of choice by bringing the scenarios to life in a very realistic way. The pathways compared optimal effective referral protocols vs referral breakdown and loss to the system. The resource provides practical guidance on what everyone can do to improve care and reduce the risks for patients systematically and efficiently. ~~The outputs are not to be used principally for commercial purpose~~ DIABETES DASHBOARD: A user team have successfully integrated a Quantis diabetes dashboard into their Health Care Provider (HCP) conversations to identify and effect pathway redesign in local diabetes pathways, which has led to improved care for patients living with Diabetes. Due to the success of the HCP engagement with the data analysis, this partnership has been established for over 5 years. Wilmington Healthcare Ltd has developed this support by adding an Inequalities analysis to support the NHS Core20PLUS5 conversation, supporting the local NHS DMUs in their plans to improve patient care for those the most deprived 20% who experience higher than average levels of Diabetes and as such poorer outcomes. ~~The same aggregated HES, Mental Health data or DIDs data outputs to be made available, if requested, to all health and social care organisations, irrespective of their value to the company~~ IRON DEFICIENCY ANAEMIA (IDA) DASHBOARDS: Wilmington collaborated with a life science industry partner to create a set of highly bespoke dashboards that illustrate the burden of iron-deficiency anaemia (IDA) within acute care, with a specific focus on IDA coded alongside high blood-loss surgical activity. In addition to looking at the burden of disease, the tool can be used to interrogate where IDA has a tangible impact on patient outcomes within acute care, such as costs and bed days, to facilitate engagement with sub-national health systems where performance can be improved with modified treatment pathways. The users of the Quantis system are provided with HES Protocol training, which is an assessment that demonstrates that users know the regulations plus T&Cs relating to use of HES, Mental Health data or DIDs data outputs. Users are provided with secure login details (username and password) that they must authenticate to access the Quantis system. ~~Wilmington Healthcare Customer Service team are responsible for user management, with the organisation’s commitment, all existing leavers and removing from the Quantis system.~~ ~~Examples of outputs produced using NHSD data by Wilmington Healthcare, with case studies published online:~~ • DISEASE INSIGHT REPORTS: Wilmington Healthcare, in conjunction with the Multiple Sclerosis Trust (MS Trust) have published a Disease Insight Report into the burden of hospitalisations in multiple sclerosis. This provided a detailed analysis of HES data. This report, first launched at the MS Trust Annual Conference, and was also shared by Public Health England and the National Clinical Director for Neurology. All disease insight reports are made available to the general public • NIEMANN- PICK C (NPC) ALGORITHM: Wilmington Healthcare have produced an algorithm that is used to search HES data using the NPC Clinical Suspicion Index to identify patients who may have attenuated Niemann-Pick C (NPC). NPC is a neuro-visceral lipid storage disorder which causes progressive neurological disease. The disease usually starts in childhood and usually results in death in the late second or third decade from aspiration pneumonia. However, there are also many patients who have 'attenuated' forms of the disease which present later in life with some atypical clinical features and slow progression. The Suspicion Index lists the symptoms and signs of NPC. The diagnostic tool has been validated and published (Neurology 2012;78(20):1560-7). This has identified the ICD-10 codes which are associated with each symptom in the Suspicion Index and then used combinations of these codes to search for patients with a high suspicion of a diagnosis of NPC. • DATA-DRIVEN DASHBOARD, PARKINSON’s UK: Wilmington Healthcare have worked in conjunction with Parkinson’s UK to build a data-driven dashboard that aims to enable individual CCGs to understand their performance in Parkinson’s management. • IMPACT OF DEPRESSION TOOL: A Client commissioned Wilmington Healthcare to produce an Impact of Depression tool to better understand the use of mental health services across the UK. This tool is now in use and has provided valuable insights into the use of mental health services across the UK. • SECONDARY PROGRESSIVE MULTIPLE SCLEROSIS (SPMS) IMPACT REPORT: In 2019 Wilmington Healthcare produced a SPMS impact report to raise awareness of the impact of the needs of this client group. The report will be launched in parliament and will provide recommendations for changing practice. The report contains a specific analysis of each individual UK wide commissioning group/health board numbers of people likely to reside with the condition to enable local understanding of the condition impact and likely service requirements. Additionally, the articles have been published in a peer reviewed journal which highlight the need for comprehensive health needs assessment in patients with conditions like MS. Wilmington Healthcare have held an MS nurse advisory board to help understand the problems nurses are facing with managing increasing caseloads within their work areas. Data has been supplied to nurses to support service changed and pathway development. •CVD HEART VALVE DISEASE: In partnership with the charity Heart Valve Voice and an expert clinical stakeholder group Wilmington Healthcare developed an optimal pathway ‘Malcolm’s story’ using the Right Care methodology and a Delphi consensus process (a well-established approach to research, identifying a consensus view across subject experts which encourages reflection among participants, who share opinions and reconsider their opinion based on the anonymised opinions of others, ultimately resulting in a one consensus view) to show depict the difference between treating someone with aortic stenosis and providing palliation for heart failure. The means to develop the pathway was based on analysis of HES data for aortic stenosis comparing patient pathways and patient outcomes. The work has been presented at three national conferences including the Kings Fund and the British Cardiovascular Society Annual Conference in Manchester. • CLIENT & GP FEDERATION PARTNERSHIP: A Client of Wilmington were approached by the Lead for a large GP Federation, who was interested in working to improve the overall service given to their wound care patients. The Client used the dashboard, that was developed by Wilmington Healthcare, to highlight how many of their patients were accessing unplanned care services for two main areas, Lower Limb Ulcer and Cellulitis • NTM LUNG DISEASE (NTM-LD) AND NON-CYSTIC FIBROSIS BRONCHIECTASIS: Wilmington Healthcare Ltd have provided their client with tabulations that compiles a range of HES data for NTM Lung disease (NTM-LD) and Non Cystic fibrosis Bronchiectasis, allowing the costs and activity associated with depression to be understood. Working with opinion leaders in rare respiratory disease the tabulations have been used to better understand the geographical spread of NTM-LD, an orphan respiratory disease. This in turn has been helpful in the design of an optimal patient pathway and the design of a service to specifically help a small but vulnerable patient population. • IDA AND HYPERKALAEMIA DASHBOARD: a resource that compiles a range of NHS England activity data for patients with IDA and Hyperkalaemia, with and without concurrent comorbidities, allowing the activity and resource impact associated with each condition to be better understood. The data has been shared in easy to use dashboards – which present data from a range of perspectives – key for understanding and changing service to better meet patient need; comparing elective v non-elective stays, cost, LOS, readmission rates etc. for patients with and without the condition, undergoing surgery and with a range of long term conditions. • HEART FAILURE DATA MAPS: A Client of Wilmington Healthcare developed the Heart Failure Data Map. To support this work Wilmington Healthcare provided the data for this resource, including population projections, a granular breakdown of hospital admissions and costs (by scheduled and emergency admissions, sex, and age), as well as how admission rates have increased or decreased over time. Finally, a total mortality figure and mortality indicator value is provided for each area, which provides an estimated number of deaths in a particular area based on its population size. • BLOOD CANCER DASHBOARD: A client of Wilmington Healthcare developed the Blood Cancer Dashboard. To support the client to keep the resource as up to date as possible, Wilmington Healthcare have recently provided hospital episode statistics (HES) to include on the Blood Cancer Dashboard in a new ‘hospital admissions’ tab. This data provides more detailed information on elective and non-elective admissions and readmissions across individual blood cancers and for blood cancers as a group, to be compared with admissions for the UK’s four most common cancers. • DEMENTIA PATHWAY TOOLKIT: In partnership with the University of Manchester Institute of the Brain, the Dementia Academy, NHS England Greater Manchester Network a piece of work was required to enable understanding of which patient pathways should change to address common issues relating to emergency hospital admissions. The data has spearheaded the development of a multidisciplinary, multi-agency integrated dementia pathway toolkit which highlights trigger factors for GPs, that might precipitate hospital admission so that these can be avoided. Patients and carers were central to the production of the work along with organisations including Greater Manchester Police, ambulance service and voluntary sectors were involved. All 12 CCGs in the area have participated and service transformation is underway. The findings have also been shared with other heath economies. • DIABETES HEALTH ECONOMY TOOL: A client and Wilmington developed a diabetes dashboard system, highlighting variation in metrics such as non-elective admissions in diabetic patients, as well as understanding how related diabetic co-morbidities such as hypoglycaemia can affect hospital admissions. The dashboards are supported by other data sources such as the National Diabetes Audit (NDA) to minimise the HES data used and give a primary/secondary care view for the business case. The outputs from these dashboards were used to support the case for a band 7 diabetic specialist nurse, and recently have been successful in receiving funding and recruiting into a substantive band 7 post. • Chronic Kidney Disease (CKD): Published in October 2020, in partnership with a Kidney Care UK and an expert clinical stakeholder group Wilmington Healthcare developed an optimal pathway ‘Sid’s story’ using the Right Care methodology and a Delphi consensus process to provide clarity on the issues faced in managing CKD when dialysis has to be the modality of choice by bringing the scenarios to life in a very realistic way. The pathways compared optimal effective referral protocols vs referral breakdown and loss to the system. The resource provides practical guidance on what everyone can do to improve care and reduce the risks for patients in a systematic and efficient way. DIABETES DASHBOARD: A user team have successfully integrated a Quantis diabetes dashboard into their Health Care Provider (HCP) conversations to identify and effect pathway redesign in local diabetes pathways, which have led to improved care for patients living with Diabetes. Due to the success of the HCP engagement with the data analysis this partnership has been established for over 5 years. Wilmington Healthcare has developed out this support through adding Inequalities analysis to support the NHS Core20PLUS5 conversation, supporting the local NHS DMU’s in their plans to improve patient care for those the most deprived 20% who experience higher than average levels of Diabetes and as such poorer outcomes. Iron Deficiency Anaemia (IDA) Dashboards: Wilmington collaborated with a life science industry partner to create a set of highly bespoke dashboards that illustrate the burden of iron-deficiency anaemia (IDA) within acute care, with specific focus on IDA coded alongside high blood-loss surgical activity. In addition to looking at the burden of disease, the tool can be used to interrogate where IDA has a tangible impact on patient outcomes within acute care, such as costs and bed days, so as to facilitate engagement with sub-national health systems where performance can be improved with modified treatment pathways. [3 paragraphs unchanged] As such the Heart Failure Data Map has been developed to demonstrate the impact of the condition to on national and local stakeholders, to support consideration of steps that can be [20 words unchanged] similarly to help reduce the burden of the condition on the NHS. Future outputs: PRIMARY BILLIARY CIRRHOSIS (PBC) AND FOLLICULAR LYMPHOMA DISEASE INSIGHT REPORT: (Expected Autumn 2023) Wilmington Healthcare Ltd is producing a disease insight report that will be used to demonstrate the current patient pathway for PBC and Follicular Lymphoma, highlighting challenges, trends, and variation across the system, and potential inadequacies of commissioned services versus patient need. The report will make recommendations for service redesign and help improve the availability of commissioned pathways for PBC and Follicular Lymphoma. Overall, the Disease Insight Report will use evidence to make suggestions on how to improve care across the patient pathway. MITRAL VALVE DISEASE (Expected Autumn 2023): Wilmington Healthcare Ltd is looking at the variation between sub-optimal and optimal pathways and creating a patient scenario in Mitral Valve Disease. The project will highlight undiagnosed patients, lack of access to treatment and its impact on patients. How using new technologies such as Transcatheter Edge to Edge Repair for mitral valve disease, will enable more patients to be treated and have better health outcomes. Wilmington Healthcare Ltd are developing a realistic patient scenario to show the difference between optimal and sub-optimal treatment, highlighting how a fictional patient could have better outcomes if they had more timely access to relevant treatment. There will be a stakeholder meeting with clinicians to present data to highlight the gap in the treatment of these patients and gain consensus around how those patients should be treated. MITRAL REGURGITATION (MR) AND TRICUSPID REGURGITATION (TR) REPORT (Expected Autumn 2023): Wilmington Healthcare Ltd is assessing the burden of Mitral Regurgitation (MR) and Tricuspid Regurgitation (TR) disease by identifying the number of diagnosed patients, treatment performed and specific outcomes (mortality, readmissions, NHS resources consumption, Length of stay) using HES analysis. The burden of MR and TR disease will also assess the access to treatment for both Degenerative and Functional MR & TR within England. The report will describe the current pathway for MR & TR patients in England and it will also set out the unmet need for MR & TR detection and treatment within England. The report will look to establish a case for change in order for NHS services to be commissioned to meet patient demand

Expected measurable benefits

It is not possible to provide full details of all expected measurable benefits and timings because many of the projects on which Wilmington Healthcare Ltd will use NHS England Data ~~within the year~~ have not yet been tendered. Wilmington Healthcare Ltd works on multiple projects, at short notice, for a large number of different national, regional and local organisations. Nevertheless, Wilmington Healthcare ~~expect~~ Ltd expects to benefit the provision of health and social care through their work, with a particular focus on: [1 paragraph unchanged] • Raising awareness of a specific disease, and enabling patients to better understand their ~~own~~ condition. [12 paragraphs unchanged] • Measuring the success and effectiveness ~~post implementation~~ post-implementation of a new pathway or service implemented within the health and social care sector [1 paragraph unchanged] ~~Specific expected benefits:~~ Publication of findings in appropriate media, such as journal articles, press releases, white papers etc. will assist with raising awareness of and action for patient quality of life, treatment options, NHS savings and improved patient pathways, as well as other benefits as detailed in the purpose statements. Through collaborative work with public-facing teams and organisations, Wilmington Healthcare Ltd is able to support benefits more widely to the public through raising awareness of diseases in the public domain. PRIMARY BILLIARY CIRRHOSIS (PBC) AND FOLLICULAR LYMPHOMA DISEASE INSIGHT REPORT: (Expected Autumn 2023) Wilmington healthcare are producing a disease insight report that will be used to demonstrate the current patient pathway for PBC and Follicular Lymphoma, highlighting challenges, trends, and variation across the system, and potential inadequacies of commissioned services versus patient need. The report will make recommendations for service redesign and help improve the availability of commissioned pathways for PBC and Follicular Lymphoma. Overall, the DIR will use evidence to make suggestions on how to improve care across the patient pathway. Action will need to be taken based on the information provided in order to create cases for change (some examples of which are covered in the case studies in the application), and implementation of benefits to health and social care. MITRAL VALVE DISEASE (Expected Autumn 2023): Wilmington Healthcare is looking at the variation between sub optimal and optimal pathways and creating a patient scenario in Mitral Valve Disease. The project will highlight undiagnosed patient, lack of access to treatment and its impact on patients. How using new technologies such as Transcatheter Edge to Edge Repair for mitral valve disease, will enable more patients to be treated and have better health outcomes. We are developing a realistic patient scenario to show the difference between optimal and sub optimal treatment, highlighting how a fictional patient could have better outcomes if they had more timely access to relevant treatment. There will be a stakeholder meeting with clinicians to present data and highlight the gap in treatment of these patients and gain consensus around how those patients should be treated. Wilmington Healthcare Ltd works with a variety of public and healthcare-facing organisations, from charities, private sector organisations and the government, depending on the project, to raise awareness of the benefits of analysis, and implementation of benefit-yielding opportunities. Wilmington publishes white papers and other relevant outputs in the public domain, working with media organisations where appropriate to raise awareness of benefits and show findings to a wide range of stakeholders, be it patients, clinicians, operational teams or the wider public. Some efforts including publications are detailed yielded and future benefits section, this work has been done alongside relevant partners such as charities or clinicians where appropriate to the project, aiding in higher awareness and attention. Mitral Regurgitation (MR) and Tricuspid Regurgitation (TR) Report (Expected Autumn 2023): Wilmington Healthcare is assessing the burden of Mitral Regurgitation (MR) and Tricuspid Regurgitation (TR) disease by identifying the number of diagnosed patients, treatment performed and specific outcomes (mortality, readmissions, NHS resources consumption, Length of stay) using HES analysis. The burden of MR and TR disease will also assess the access to treatment for both Degenerative and Functional MR & TR within England. The report will describe the current pathway for MR & TR patients in England and it will also set out the unmet need for MR & TR detection and treatment within England. The report will look to establish a case for change in order for NHS services to be commissioned to meet patient demand.

Benefits reported

~~Some of the most recent yielded benefits are illustrated here:~~ DATA-DRIVEN DASHBOARD, PARKINSONS UK: ~~DATA DRIVEN DASHBOARD, PARKINSONS UK:~~ The Parkinson's team have worked with South Tees using the dashboard data to justify ongoing service investment and identify areas for improvement. They established a rapid-access, community-based unit with a mix of medical, nursing, therapist, and mental health services to address complex issues. The unit benchmarked hospital admissions and prescribing costs and demonstrated significant cost savings to the local CCGs. As a result, they have a fully commissioned Parkinson's Advanced Symptoms Unit that is cost-effective and delivers excellent outcomes for patients and carers. The Parkinson's team have worked with South Tees using the dashboard data to justify ongoing service investment and identified areas for improvement. They established a rapid-access, community-based unit with a mix of medical, nursing, therapist, and mental health services to address complex issues. The unit benchmarked hospital admissions and prescribing costs and demonstrated significant cost savings to the local CCGs. As a result, they have a fully commissioned Parkinson's Advanced Symptoms Unit that is cost-effective and delivering deliver excellent outcomes for patients and carers. [1 paragraph unchanged] Depression is costly to the NHS and healthcare system, particularly in acute trusts not covered by block ~~contract. Many~~ contracts. For many patients with depression in specialist mental health services could be better managed in primary care. ~~Our~~ The tool was used to support the Mental Health Lead for the GP [68 words unchanged] patients accessing social prescribing and receiving treatment in line with NICE recommendations. CVD HEART VALVE ~~DISEASE:~~ DISEASE REPORT AND PRESENTATION: Data analysis carried out to support the creation of an optimal care pathway showed that patients who received intervention from a ~~catheter inserted~~ catheter-inserted heart valve benefitted from improved quality of life, whilst saving the NHS [21 words unchanged] savings are made, which may fund workforce or additional equipment such as ~~specialise~~ specialised equipment or beds, depending on the requirements of the organisation making the ~~saving.~~ savings. [1 paragraph unchanged] The data presented within this Dashboard caused concern, leading to a care [7 words unchanged] had been diagnosed with a wound infection. Subsequent to this 3 months of training and education events took place, and the data was again used [14 words unchanged] they could take steps to ensure any future issues were highlighted and ~~could be~~ addressed. In addition, a series of Health Promotion initiatives were introduced, such as patient leaflets, posters and drop-in clinics that patients could access ~~within~~ during surgeries. Forward 12 months from the comprehensive training programme that was initiated [27 words unchanged] numbers are down by 30%, with some practices achieving much higher numbers. [1 paragraph unchanged] This work revealed that the main reason for emergency admission in MS patients is Urinary Tract Infections. These admissions are estimated to cost over £40 Million per year (this takes into account the cost to the NHS ~~over £40k per year.~~ of the UTIs in this patient cohort). This information was used as part of a business case for a [20 words unchanged] year, saving patients and their families the distress of a hospital stay. [3 paragraphs unchanged] An NHS client of Wilmington Healthcare Ltd developed a data tool to support with work they are doing with [93 words unchanged] optimal care pathways for patients at the provider organisations, the money saved ~~being~~ is more efficiently used by the trusts for both workforce investment and specialist equipment provision. ~~Savings~~ Savings, where there is a deficit already ~~existing~~ existing, will also be absorbed to continue the provision of services to existing patients. [1 paragraph unchanged] Clinical management of IDA prior to high blood loss surgery is critical [34 words unchanged] have consequences with respect to their outcomes and utilisation of health system ~~resource.~~ resources. By facilitating engagement with areas that have the potential to improve their surgical pathways, the tool is designed to reduce [17 words unchanged] our engagement tool, our client has been able to drive awareness around the clinical management of IDA in surgical pathways, ensuring that these pathways are [18 words unchanged] in patients undergoing high blood loss surgery continues to have an impact. IMPACT OF ~~ETHNICTY~~ ETHNICITY ON CANCER PATIENTS IN ENGLAND A client of Wilmington Healthcare Ltd produced a research article to highlight and explore the links between ethnicity and cancer care using the output Wilmington Healthcare Ltd had provided the client using HES. The client produced this research article [11 words unchanged] cancer types is vital if NHS England is to meet the UK ~~governments~~ government's priority to reduce health inequalities. The Client explored the impact of ethnicity [6 words unchanged] a range of patient activity indicators across three cancer types: chronic lymphocytic ~~leukemia,~~ leukaemia, multiple myeloma and prostate cancer. The research article demonstrated three core findings. [42 words unchanged] The output of the research article highlights key issues which contribute to ~~support~~ supporting the NHS Core 20PLUS5 strategy and adds HES-driven evidence to the inequalities conversation. [1 paragraph unchanged] The IoD tool is helping a Wilmington client enable local health systems to understand the impact of depression through the display of HES Data and allow comparison against similar systems across England. [51 words unchanged] services. Where depression/depressive disorder is coded, there is a huge impact on ~~resource~~ resources and capacity within acute care, raising the question as to whether there [5 words unchanged] to better manage depression in admitted patient care. The analysis Wilmington Healthcare Ltd has provided has provided a great means for the client to help drive significant change and increased collaboration with ICSs. [1 paragraph unchanged] Partnering with a Consultant Oncologist from the Clatterbridge Cancer Centre, Wilmington Healthcare Ltd has contributed to a publication “Estimated Prevalence of Metastatic Breast Cancer in England 2016-2021”. Record collection currently ~~focusses~~ focuses around deaths from cancer, ~~whist~~ while often overlooking those surviving and living with breast cancer. Given the unknown [174 words unchanged] support the NHS to design and plan services in an informed way.

Objective for processing

Wilmington Healthcare Ltd requires access to NHS England Data for the purposes of:

1. Raising disease awareness, management and diagnosis through analysing data and publishing reports and tabulations which are available in the public domain.

Data is used in 4 phases:

During the analysis phase, the objectives are to:

Wilmington Healthcare Ltd do not specifically look at anything directly with GIRFT, however, they have mapped data from trust to GIRFT regions to understand where there may be variation to benchmarks and opportunities for comparison with trusts in these areas. Wilmington Healthcare Ltd has also looked at measures available in HES that are also talked about under GIRFT programmes, (e.g. procedures) again not specifically with GIRFT.

During the planning phase, the objectives are to:

- Apply predictive modelling where appropriate to understand the potential impact on patients plus the health and social care system by adopting a clinical pathway or service design which is optimal.

During the implementation phase, the objectives are to:

-Enable continual monitoring, communication and education with all NHS stakeholders as to the rationale and requirements for a new clinical pathway or service.

During the review phase, the objectives are to:

- Review progress frequently and make any necessary, close to real-time, changes to the pathway or service to optimise efficiency.

The following NHS England Data will be accessed:

• Hospital Episode Statistics (HES) Admitted Patient Care, Accident & Emergency, Critical Care, Outpatients

• Emergency Care Data Set (ECDS)

• Mental Health Services Data (MHSDS)

• Diagnostic Imaging Data Set (DIDS)

Projects range across therapy areas and patient settings, therefore data across ECDS and HES is necessary to ensure that Wilmington Healthcare Ltd and its partners can analyse a full patient pathway and visualise how the patient journey can interact with various areas of the system. This situational setting analysis then extends and interacts with the DIDS Set to encompass diagnostic pathways from referral and subsequent interventions and outcomes, and the MHSDS to analyse the system activity of patients with Mental Health diagnoses and how those patient cohorts interact with the various areas of the system.

Wilmington Healthcare Ltd undertakes numerous projects utilising NHS England Data on a yearly or one-off basis. Insights including HES Data contain Quantis outputs.

Quantis portal system is an electronic online commissioning, healthcare and service improvement support solution generating outputs that are aggregated, small number suppressed. The portal contains visualisations of data, to help translate data into a digestible format. This is particularly desired by those interacting with the data whose primary role is not data-focused. The system contains data that is minimised using the recommended guidelines and filters the data into visualisations that are easy to understand.

The Quantis system is only to be provided to a restricted number of users, who have undergone and passed protocol training within one month of access being granted.

Access to the portal works as follows;

Each user organisation agrees a contract with Wilmington Healthcare Ltd stipulating Terms and Conditions (T&Cs). This contract provides additional safeguards clearly explaining data privacy, and acceptable use of the system and the data it contains. The agreement contains but is not limited to:

• The outputs to be used exclusively for the provision of outputs to assist health and social care organisations.

• The outputs are not to be used principally for commercial purpose

• The same aggregated HES, Mental Health data or DIDs data outputs are to be made available, if requested, to all health and social care organisations, irrespective of their value to the company

• Wilmington Healthcare Ltd Customer Service team are responsible for user management, with the organisation’s commitment, all existing leavers and removing from the Quantis system

The level of the Data will be:

• Pseudonymised

The Data will be minimised as follows:

• Limited to data between 1st April 2014 to the most recently available data disseminated as per the DSA.

The Data will be minimised for each use in the following ways:

1. Raise disease awareness, management and diagnosis through analysing data and publishing reports and tabulations which are available in the public domain.

For points 1 and 2 above, outputs will only contain the most recent 5 years of data.

For point 3 above, 10 years of data are required as Wilmington Healthcare Ltd undertakes projects for rare disease studies, where a specific diagnosis for that condition is not available. This therefore requires detailed analysis of patient diagnoses over the 10 years to develop patterns of diagnoses/procedures for patients and create a cohort of patients most likely to have a rare condition for them to be tested and treated appropriately.

Wilmington Health require these 10 years of Data as these conditions impact less than 5 in 10,000 patients, therefore, this length of time is necessary to develop a robust cohort of patients for analysis.

Data is minimised by Wilmington Healthcare Ltd on a project-by-project basis to ensure that only the appropriate fields are processed.

The minimisation per use will be reviewed and approved by the Wilmington Healthcare Ltd Advisory Board. The board contains non-commercial members of Wilmington Healthcare Ltd staff and also lay members who asses each new project against Wilmington Healthcare Ltd’s Data Protection Impact Assessment (DPIA) and Data Sharing Agreement (DSA) to ensure alignment and ensure no variations or new uses of the data. The advisory board asks the submitter to consider if any other data, such as data in the public domain can be used for which they are applying.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(f) - processing is necessary for the legitimate interests pursued by the controller or by a third party.

Wilmington Healthcare Ltd has determined the processing is necessary for its legitimate interests in being able to provide tools and services that will benefit healthcare organisations.

Wilmington Healthcare Ltd is a commercial company and charges for its services (on a profit-making basis) to specifically provide services to benefit NHS health and social care. The Data to which access is requested are proportionate and necessary and Wilmington Healthcare Ltd have completed a legitimate interest assessment (LIA) and is satisfied that the interests of the data subjects do not override their legitimate interests; and that they would reasonably expect the processing and it would not cause unjustified harm.

The lawful basis for processing special category data under the UK GDPR is:

Nasstar provides IT support and IT hosting services to Wilmington Healthcare Ltd and will store the Data as contracted by Wilmington Healthcare Ltd. Their primary responsibilities are to provide a dedicated infrastructure environment, desktop services and support including a 24x7 services desk.

Snowflake provides Cloud services to Wilmington Healthcare Ltd.

Snowflake has capabilities to support the infrastructure that hosts the Data but not the permissions to access the Data.

Wilmington Plc is the parent company, Wilmington Plc do not have any influence on the means of purpose for data processing, nor do their employees process the Data. Wilmington Plc are not acting in any capacity as either a Processor or a Controller. Wilmington Healthcare Ltd are the sole controller, it determines the way the data is processed, and the purposes, and administers the advisory board that reviews each project.

Wilmington Shared Services Ltd's primary responsibilities are to perform user and data management of the licenced data in line with agreement and control from Wilmington Healthcare Ltd.

Data will be accessed by substantive employees of Wilmington Healthcare Ltd and substantive employees of Wilmington Shared Services.

Expected output

The expected outputs of the processing will be:

• Recommendations on how to achieve an overall improvement in patient outcomes, including reduced comorbid disease, mortality, Length of Stay (LOS), and hospital-acquired infection. Upon the implementation of recommendations, Wilmington would expect there to be benefits to the provision of health and social care.

• Outline the benefits for the appropriate movement of patient treatment from inpatient to outpatient or primary care

The above three outputs are more generalised outputs aligned to Wilmington Healthcare Ltd overall purpose,these outputs could take the form of Reports, Tabulations or Dashboards.

• Provide detailed, evidence-based recommendations for how to improve care in specific organisations or therapy areas

• Allow clinicians and commissioners to interpret the Data and take appropriate actions to safeguard against excess mortality, reduce mortality rates and improve the quality of care where possible

Wilmington Healthcare Ltd undertakes numerous projects utilising NHS England data on a yearly or one-off basis. These outputs include:

Reports:

• Disease Insight Reports

• Costed Integrated Pathways

• Infographics

• Presentations

• Submissions to peer review journals

Tabulations:

• Excel-based outputs

• Tableau-based outputs

Dashboards:

• Quantis portal system

• Online dashboards

• Offline dashboards (MS Excel, Tableau or other BI software)

• Maps

• Augmented analytics

Examples of outputs produced using NHS England data by Wilmington Healthcare Ltd, with case studies published online:

• DISEASE INSIGHT REPORTS: Wilmington Healthcare Ltd, in conjunction with the Multiple Sclerosis Trust (MS Trust) have published a Disease Insight Report into the burden of hospitalisations in multiple sclerosis. This provided a detailed analysis of HES data. This report was first launched at the MS Trust Annual Conference and was also shared by Public Health England and the National Clinical Director for Neurology. All disease insight reports are made available to the general public

• NIEMANN- PICK C (NPC) ALGORITHM: Wilmington Healthcare Ltd has produced an algorithm that is used to search HES data using the NPC Clinical Suspicion Index to identify patients who may have attenuated Niemann-Pick C (NPC). NPC is a neuro-visceral lipid storage disorder which causes progressive neurological disease. The disease usually starts in childhood and usually results in death in the late second or third decade from aspiration pneumonia. However, there are also many patients who have 'attenuated' forms of the disease which present later in life with some atypical clinical features and slow progression. The Suspicion Index lists the symptoms and signs of NPC. The diagnostic tool has been validated and published (Neurology 2012;78(20):1560-7). This has identified the ICD-10 codes which are associated with each symptom in the Suspicion Index and then used combinations of these codes to search for patients with a high suspicion of a diagnosis of NPC.

• DATA-DRIVEN DASHBOARD, PARKINSON’s UK: Wilmington Healthcare Ltd has worked in conjunction with Parkinson’s UK to build a data-driven dashboard that aims to enable individual CCGs to understand their performance in Parkinson’s management.

• IMPACT OF DEPRESSION TOOL: A Client commissioned Wilmington Healthcare Ltd to produce an Impact of Depression tool to better understand the use of mental health services across the UK. This tool is now in use and has provided valuable insights into the use of mental health services across the UK.

• SECONDARY PROGRESSIVE MULTIPLE SCLEROSIS (SPMS) IMPACT REPORT: In 2019 Wilmington Healthcare Ltd produced an SPMS impact report to raise awareness of the impact of the needs of this client group. The report will be launched in parliament and will provide recommendations for changing practices. The report contains a specific analysis of each UK-wide commissioning group/health board number of people likely to reside with the condition to enable local understanding of the condition impact and likely service requirements. Additionally, the articles have been published in a peer-reviewed journal which highlights the need for comprehensive health needs assessment in patients with conditions like MS. Wilmington Healthcare Ltd has held an MS nurse advisory board to help understand the problems nurses are facing with managing increasing caseloads within their work areas. Data has been supplied to nurses to support service change and pathway development.

•CVD HEART VALVE DISEASE REPORT AND PRESENTATION: In partnership with the charity Heart Valve Voice and an expert clinical stakeholder group Wilmington Healthcare Ltd developed an optimal pathway ‘Malcolm’s story’ using the Right Care methodology and a Delphi consensus process (a well-established approach to research, identifying a consensus view across subject experts which encourages reflection among participants, who share opinions and reconsider their opinion based on the anonymised opinions of others, ultimately resulting in a one consensus view) to show depict the difference between treating someone with aortic stenosis and providing palliation for heart failure. The means to develop the pathway was based on analysis of HES data for aortic stenosis comparing patient pathways and patient outcomes. The work has been presented at three national conferences including the King's Fund and the British Cardiovascular Society Annual Conference in Manchester.

• CLIENT & GP FEDERATION PARTNERSHIP: A Client of Wilmington were approached by the Lead for a large GP Federation, who was interested in working to improve the overall service given to their wound care patients. The Client used the dashboard, which was developed by Wilmington Healthcare Ltd, to highlight how many of their patients were accessing unplanned care services for two main areas, Lower Limb Ulcer and Cellulitis

• NTM LUNG DISEASE (NTM-LD) AND NON-CYSTIC FIBROSIS BRONCHIECTASIS: Wilmington Healthcare Ltd Ltd have provided their client with tabulations that compile a range of HES data for NTM Lung disease (NTM-LD) and Non Cystic fibrosis Bronchiectasis, allowing the costs and activity associated with depression to be understood. Working with opinion leaders in rare respiratory disease the tabulations have been used to better understand the geographical spread of NTM-LD, an orphan respiratory disease. This in turn has been helpful in the design of an optimal patient pathway and the design of a service to specifically help a small but vulnerable patient population.

HEART FAILURE DATA MAPS: A Client of Wilmington Healthcare Ltd developed the Heart Failure Data Map. To support this work Wilmington Healthcare Ltd provided the data for this resource, including population projections, a granular breakdown of hospital admissions and costs (by scheduled and emergency admissions, sex, and age), as well as how admission rates have increased or decreased over time. Finally, a total mortality figure and mortality indicator value are provided for each area, which provides an estimated number of deaths in a particular area based on its population size.

BLOOD CANCER DASHBOARD: A client of Wilmington Healthcare Ltd developed the Blood Cancer Dashboard. To support the client in keeping the resource as up-to-date as possible, Wilmington Healthcare Ltd has recently provided hospital episode statistics (HES) to include on the Blood Cancer Dashboard in a new ‘hospital admissions’ tab. This data provides more detailed information on elective and non-elective admissions and readmissions across individual blood cancers and for blood cancers as a group, to be compared with admissions for the UK’s four most common cancers.

DIABETES HEALTH ECONOMY TOOL: A client and Wilmington developed a diabetes dashboard system, highlighting variation in metrics such as non-elective admissions in diabetic patients, as well as understanding how related diabetic co-morbidities such as hypoglycaemia can affect hospital admissions. The dashboards are supported by other data sources such as the National Diabetes Audit (NDA) to minimise the HES data used and give a primary/secondary care view for the business case. The outputs from these dashboards were used to support the case for a band 7 diabetic specialist nurse, and recently have been successful in receiving funding and recruiting into a substantive band 7 post.

CHRONIC KIDNEY DISEASE (CKD)REPORT : Published in October 2020, in partnership with Kidney Care UK and an expert clinical stakeholder group Wilmington Healthcare Ltd, developed an optimal pathway ‘Sid’s story’ using the Right Care methodology and a Delphi consensus process to provide clarity on the issues faced in managing CKD when dialysis has to be the modality of choice by bringing the scenarios to life in a very realistic way. The pathways compared optimal effective referral protocols vs referral breakdown and loss to the system. The resource provides practical guidance on what everyone can do to improve care and reduce the risks for patients systematically and efficiently.

DIABETES DASHBOARD: A user team have successfully integrated a Quantis diabetes dashboard into their Health Care Provider (HCP) conversations to identify and effect pathway redesign in local diabetes pathways, which has led to improved care for patients living with Diabetes. Due to the success of the HCP engagement with the data analysis, this partnership has been established for over 5 years. Wilmington Healthcare Ltd has developed this support by adding an Inequalities analysis to support the NHS Core20PLUS5 conversation, supporting the local NHS DMUs in their plans to improve patient care for those the most deprived 20% who experience higher than average levels of Diabetes and as such poorer outcomes.

IRON DEFICIENCY ANAEMIA (IDA) DASHBOARDS: Wilmington collaborated with a life science industry partner to create a set of highly bespoke dashboards that illustrate the burden of iron-deficiency anaemia (IDA) within acute care, with a specific focus on IDA coded alongside high blood-loss surgical activity. In addition to looking at the burden of disease, the tool can be used to interrogate where IDA has a tangible impact on patient outcomes within acute care, such as costs and bed days, to facilitate engagement with sub-national health systems where performance can be improved with modified treatment pathways.

HEART FAILURE DATA MAPS

Heart failure is similarly the leading cause of hospital admissions in over 65s and costs the NHS £2 billion a year (around 2% of its total budget).

Future outputs:

PRIMARY BILLIARY CIRRHOSIS (PBC) AND FOLLICULAR LYMPHOMA DISEASE INSIGHT REPORT: (Expected Autumn 2023) Wilmington Healthcare Ltd is producing a disease insight report that will be used to demonstrate the current patient pathway for PBC and Follicular Lymphoma, highlighting challenges, trends, and variation across the system, and potential inadequacies of commissioned services versus patient need. The report will make recommendations for service redesign and help improve the availability of commissioned pathways for PBC and Follicular Lymphoma. Overall, the Disease Insight Report will use evidence to make suggestions on how to improve care across the patient pathway.

MITRAL VALVE DISEASE (Expected Autumn 2023): Wilmington Healthcare Ltd is looking at the variation between sub-optimal and optimal pathways and creating a patient scenario in Mitral Valve Disease. The project will highlight undiagnosed patients, lack of access to treatment and its impact on patients. How using new technologies such as Transcatheter Edge to Edge Repair for mitral valve disease, will enable more patients to be treated and have better health outcomes. Wilmington Healthcare Ltd are developing a realistic patient scenario to show the difference between optimal and sub-optimal treatment, highlighting how a fictional patient could have better outcomes if they had more timely access to relevant treatment. There will be a stakeholder meeting with clinicians to present data to highlight the gap in the treatment of these patients and gain consensus around how those patients should be treated.

MITRAL REGURGITATION (MR) AND TRICUSPID REGURGITATION (TR) REPORT (Expected Autumn 2023): Wilmington Healthcare Ltd is assessing the burden of Mitral Regurgitation (MR) and Tricuspid Regurgitation (TR) disease by identifying the number of diagnosed patients, treatment performed and specific outcomes (mortality, readmissions, NHS resources consumption, Length of stay) using HES analysis. The burden of MR and TR disease will also assess the access to treatment for both Degenerative and Functional MR & TR within England. The report will describe the current pathway for MR & TR patients in England and it will also set out the unmet need for MR & TR detection and treatment within England. The report will look to establish a case for change in order for NHS services to be commissioned to meet patient demand

Benefits reported

DATA-DRIVEN DASHBOARD, PARKINSONS UK:

The Parkinson's team have worked with South Tees using the dashboard data to justify ongoing service investment and identify areas for improvement. They established a rapid-access, community-based unit with a mix of medical, nursing, therapist, and mental health services to address complex issues. The unit benchmarked hospital admissions and prescribing costs and demonstrated significant cost savings to the local CCGs. As a result, they have a fully commissioned Parkinson's Advanced Symptoms Unit that is cost-effective and delivers excellent outcomes for patients and carers.

IMPACT OF DEPRESSION TOOL

Depression is costly to the NHS and healthcare system, particularly in acute trusts not covered by block contracts. For many patients with depression specialist mental health services could be better managed in primary care. The tool was used to support the Mental Health Lead for the GP federation in Northampton and stakeholders to make a case for change to improve depression management. Data showed that most costs related to depression were due to acute trust activity, especially for patients with comorbid long-term conditions. The case for change led to the prioritisation of depression locally and the subsequent development and implementation of an Integrated Depression Pathway which has led to an increase in the number of patients accessing social prescribing and receiving treatment in line with NICE recommendations.

CVD HEART VALVE DISEASE REPORT AND PRESENTATION:

Data analysis carried out to support the creation of an optimal care pathway showed that patients who received intervention from a catheter-inserted heart valve benefitted from improved quality of life, whilst saving the NHS £20,000 per patient, which could then be reallocated to other areas. Cost savings can be reallocated to the specific department where savings are made, which may fund workforce or additional equipment such as specialised equipment or beds, depending on the requirements of the organisation making the savings.

CLIENT & GP FEDERATION PARTNERSHIP:

The data presented within this Dashboard caused concern, leading to a care audit highlighting the number of people who had been diagnosed with a wound infection. Subsequent to this 3 months of training and education events took place, and the data was again used to highlight which areas should be prioritised. Data was used with administration staff so they could take steps to ensure any future issues were highlighted and addressed.

In addition, a series of Health Promotion initiatives were introduced, such as patient leaflets, posters and drop-in clinics that patients could access during surgeries. Forward 12 months from the comprehensive training programme that was initiated to the next annual data set. The data showed a marked drop in the number of wound care patients accessing unplanned care services. Overall, within the Federation numbers are down by 30%, with some practices achieving much higher numbers.

MS EMERGENCY ADMISSIONS:

This work revealed that the main reason for emergency admission in MS patients is Urinary Tract Infections. These admissions are estimated to cost over £40 Million per year (this takes into account the cost to the NHS of the UTIs in this patient cohort). This information was used as part of a business case for a portable bladder scanner. Since this time there has been a reduction in UTI emergency admissions, by around 2000 spells a year, saving patients and their families the distress of a hospital stay.

DIABETES HEALTH ECONOMY TOOL:

A client and Wilmington developed a diabetes dashboard system, highlighting variation in metrics such as non-elective admissions in diabetic patients, as well as understanding how related diabetic co-morbidities such as hypoglycaemia can affect hospital admissions. The outputs from these dashboards were used to support the case for a band 7 diabetic specialist nurse, and recently have been successful in receiving funding and recruiting into a substantive band 7 post.

CARDIAC DEVICES GIRFT REGION TOOL:

An NHS client of Wilmington Healthcare Ltd developed a data tool to support with work they are doing with a Cardiac Provider Collaborative in South London. The tool enabled and supported the clinical council to understand, quantify and then drive down unwarranted variation and create savings. The outcome of the clinical council is projected to be £1.3 million of savings per year which can be utilised for bettering outcomes of patients in the system. Feedback from a member of the clinical council includes "HES data was one of the fundamental data sets for the cardiac clinical council, and ultimately on what its successful outcome was based". These savings can be reinvested in optimal care pathways for patients at the provider organisations, the money saved is more efficiently used by the trusts for both workforce investment and specialist equipment provision. Savings, where there is a deficit already existing, will also be absorbed to continue the provision of services to existing patients.

IRON DEFICIENCY ANAEMIA (IDA)

Clinical management of IDA prior to high blood loss surgery is critical to ensure timely patient discharge and robust patient outcomes. There is significant variation at a sub-national/trust level with respect to patient monitoring prior to surgery. Sub-optimal diagnosis and/or intervention in patients with IDA can have consequences with respect to their outcomes and utilisation of health system resources. By facilitating engagement with areas that have the potential to improve their surgical pathways, the tool is designed to reduce disparity in surgical pathways where IDA diagnosis/intervention has an impact on patient lives. Through the use of our engagement tool, our client has been able to drive awareness around the clinical management of IDA in surgical pathways, ensuring that these pathways are optimised across the healthcare system in England, and improving patient outcomes in areas where the presence of IDA in patients undergoing high blood loss surgery continues to have an impact.

IMPACT OF ETHNICITY ON CANCER PATIENTS IN ENGLAND

A client of Wilmington Healthcare Ltd produced a research article to highlight and explore the links between ethnicity and cancer care using the output Wilmington Healthcare Ltd had provided the client using HES. The client produced this research article because understanding the relationship between ethnicity and patient care for specific cancer types is vital if NHS England is to meet the UK government's priority to reduce health inequalities. The Client explored the impact of ethnicity on clinical severity, treatment costs and a range of patient activity indicators across three cancer types: chronic lymphocytic leukaemia, multiple myeloma and prostate cancer. The research article demonstrated three core findings. South Asian patients have significantly higher clinical severity (CC scores) than the population average. Black and South Asian patients have higher average treatment costs, with the effect particularly strong for Black patients. Finally, COVID-19 had a disproportionate impact on ethnic minority patients. The output of the research article highlights key issues which contribute to supporting the NHS Core 20PLUS5 strategy and adds HES-driven evidence to the inequalities conversation.

IMPACT OF DEPRESSION TOOL

The IoD tool is helping a Wilmington client enable local health systems to understand the impact of depression through the display of HES Data and allow comparison against similar systems across England. This is informing ICSs to prioritise depression services and better care pathways ‘beyond IAPT’ to support improved integrated care across the spectrum of patient severity. Market Access teams are working alongside local ICS commissioners to identify and effect positive changes to reduce the financial and clinical Impact of Depression on local services. Where depression/depressive disorder is coded, there is a huge impact on resources and capacity within acute care, raising the question as to whether there should be services in place to better manage depression in admitted patient care. The analysis Wilmington Healthcare Ltd has provided has provided a great means for the client to help drive significant change and increased collaboration with ICSs.

METASTATIC BREAST CANCER PUBLICATION

Partnering with a Consultant Oncologist from the Clatterbridge Cancer Centre, Wilmington Healthcare Ltd has contributed to a publication “Estimated Prevalence of Metastatic Breast Cancer in England 2016-2021”. Record collection currently focuses around deaths from cancer, while often overlooking those surviving and living with breast cancer. Given the unknown number, the publication aims to ascertain the prevalence of people living with breast cancer. The publication estimated the number of people living with metastatic breast cancer in England, how this figure had changed over the previous five years, and the level of clinical activity created in the treatment and care of these people. The findings highlight that these numbers have increased steadily over the previous five years. Overall, the number of hospital spells, an indication of activity in hospitals for these patients, also increased over the five years. The outputs from the publication were commented on by the Chief Executive of Breast Cancer Now, stating that the estimate of people living with breast cancer in England is a landmark moment in understanding the true number of people living with secondary breast cancer in England. The estimate indicated that there are more people living with secondary breast cancer than the previous gross underestimate of the whole of the UK. The estimate supports the value of the NHS Funded metastatic breast cancer audit which will help support the NHS to design and plan services in an informed way.

DARS-NIC-16016-Y9H1D-v13.2 30 August 2023 to 29 November 2023

Title: Hospital Episode Statistics (HES), ECDS, Diagnostic Imaging Dataset (DIDs) and sensitive Mental Health data to assist disease awareness, commissioning, and help to produce longitudinal rare disease analysis and reports
Commercial: Yes
Sublicensing: No
Datasets: 11
Files released: 0

What changed from DARS-NIC-16016-Y9H1D-v12.2

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

Fields changed from DARS-NIC-16016-Y9H1D-v12.2
Field	Was	Became
Start date	~~2022-08-30~~	2023-08-30
End date	~~2023-08-29~~	2023-11-29
Bridge file: Hospital Episode Statistics to Diagnostic Imaging Dataset: legal basis	~~Health and Social Care Act 2012 - s261 - 'Other dissemination of information'~~	Health and Social Care Act 2012 – s261(2)(a)
Diagnostic Imaging Data Set (DID): legal basis	~~Health and Social Care Act 2012 - s261 - 'Other dissemination of information'~~	Health and Social Care Act 2012 – s261(2)(a)
Emergency Care Data Set (ECDS): legal basis	~~Health and Social Care Act 2012 - s261 - 'Other dissemination of information'~~	Health and Social Care Act 2012 – s261(2)(a)
HES-ID to MPS-ID HES Admitted Patient Care: legal basis	~~Health and Social Care Act 2012 - s261 - 'Other dissemination of information'~~	Health and Social Care Act 2012 – s261(2)(a)
HES-ID to MPS-ID HES Outpatients: legal basis	~~Health and Social Care Act 2012 - s261 - 'Other dissemination of information'~~	Health and Social Care Act 2012 – s261(2)(a)
Hospital Episode Statistics Accident and Emergency (HES A and E): legal basis	~~Health and Social Care Act 2012 - s261 - 'Other dissemination of information'~~	Health and Social Care Act 2012 – s261(2)(a)
Hospital Episode Statistics Admitted Patient Care (HES APC): legal basis	~~Health and Social Care Act 2012 - s261 - 'Other dissemination of information'~~	Health and Social Care Act 2012 – s261(2)(a)
Hospital Episode Statistics Critical Care (HES Critical Care): legal basis	~~Health and Social Care Act 2012 - s261 - 'Other dissemination of information'~~	Health and Social Care Act 2012 – s261(2)(a)
Hospital Episode Statistics Outpatients (HES OP): legal basis	~~Health and Social Care Act 2012 - s261 - 'Other dissemination of information'~~	Health and Social Care Act 2012 – s261(2)(a)
Mental Health Services Data Set (MHSDS): legal basis	~~Health and Social Care Act 2012 - s261 - 'Other dissemination of information'~~	Health and Social Care Act 2012 – s261(2)(a)
Mental Health and Learning Disabilities Data Set (MHLDDS): legal basis	~~Health and Social Care Act 2012 - s261 - 'Other dissemination of information'~~	Health and Social Care Act 2012 – s261(2)(a)

Objective for processing

[1 paragraph unchanged] The ~~data~~ Data requested is necessary for the purposes of the legitimate interests pursued by [59 words unchanged] to specifically provide services to benefit NHS health and social care. The ~~data~~ Data to which access is requested are proportionate and necessary and Wilmington Healthcare [72 words unchanged] and guaranteeing secure destruction at any stage at the request of NHS ~~Digital~~ England or after a defined period on completion of the project. The processing of the ~~data~~ Data is essential - without it, Wilmington would not be able to positively impact healthcare to the same extent, with case studies highlighted in the recent NHS ~~Digital~~ England Clinical Review: The Impact of data release through the Data Access Request Service. The ~~data~~ Data will be used to support the NHS either directly through the delivery [20 words unchanged] end beneficiary. Examples of this are provided in the benefits section below. The Legal basis for processing of personal data relating to patient health [95 words unchanged] and guaranteeing secure destruction at any stage at the request of NHS ~~Digital~~ England or after a defined period on completion of the project. Wilmington Healthcare look to undertake projects that incorporate the Hospital Episode Statistics [5 words unchanged] (ECDS), Mental Health Services Data Set (MHSDS) or Diagnostic Imaging Dataset (DIDs) ~~data~~ Data with customers in the Life Sciences (pharmaceutical, medical device, bioscience), charity / not for profit / patient organisations, NHS organisations and academia. A workplan is supplied to NHS ~~Digital~~ England that contains the project, details of the ~~data~~ Data included, minimisation applied to the ~~data~~ Data for that project along with the name of the customer and industry that they are classified within. [10 paragraphs unchanged] The ~~data~~ Data will be used to support the NHS either directly through the delivery [23 words unchanged] this have been provided within the Expected Measurable Benefits section of this ~~Agreement.~~ Data Sharing Agreement (DSA). Access to the pseudonymised, record level ~~data~~ Data are only available for named, trained members of Wilmington Healthcare or Wilmington [6 words unchanged] all substantively employed by either Wilmington Healthcare or Wilmington Shared Services Ltd. [5 paragraphs unchanged] Wilmington Healthcare’s outputs are not limited to any particular age, region or any other subgroup or disease risk factor. However, the HES and ECDS ~~data~~ Data has been restricted to only the relevant fields. NHS ~~Digital~~ England has applied column level minimisation to the HES and ECDS extracts; i.e. [37 words unchanged] Wilmington Healthcare has selected only to receive one variety of these. NHS ~~Digital~~ England has worked closely with the applicant throughout previous iterations of the ~~agreement~~ DSA to review and advise on efforts made to reduce the number of [29 words unchanged] sources and fields required for each project to minimise that shared further. Data has been selected after careful review of the fields requested, and that only necessary ~~data~~ Data needed for purposes covered in this ~~agreement~~ DSA are requested. Wilmington Healthcare review the ~~data~~ Data provided and warehoused against data that is used to understand if further [68 words unchanged] Board, containing lay members, who assess each new project against our NHS ~~Digital~~ England DPIA and the DSA to ensure alignment and ensure no variations or new uses of the ~~data.~~ Data. Each advisory board application asks the submitter to consider if any other [38 words unchanged] assessing compliance against the data minimisation principle in line with UK GDPR. [1 paragraph unchanged] For point 3 above, 10 years of ~~data~~ Data are required as Wilmington Healthcare undertakes projects for rare disease studies, where [51 words unchanged] be tested and treated appropriately. Wilmington Health require this 10-year period of ~~data~~ Data as these conditions impact less than 5 in 10,000 patients, therefore, this length of time is necessary to develop a robust cohort of patients for analysis. Under this ~~Agreement,~~ DSA, only aggregated outputs with small numbers suppressed will be produced in line with HES Analysis Guidance. Anything other than this will require a separate application and ~~agreement~~ DSA with NHS ~~Digital.~~ England . [13 paragraphs unchanged] Wilmington Healthcare undertake numerous projects utilising NHS ~~Digital data~~ England Data on a yearly or one-off bases. Insights including HES ~~data~~ Data contain Quantis outputs. [9 paragraphs unchanged] For the avoidance of doubt, the outputs produced by Wilmington that incorporate the HES, Mental Health ~~data~~ Data and DIDs ~~data~~ Data supplied under this license by NHS ~~Digital~~ England will not: [8 paragraphs unchanged] Wilmington Healthcare requires ~~data~~ Data from NHS ~~Digital~~ England for the purposes of these legitimate interests. Processing personal data is necessary for Wilmington Healthcare’s legitimate interests which are described in this application. The ~~data~~ Data to which access is requested are proportionate and necessary to achieve those [75 words unchanged] and guaranteeing secure destruction at any stage at the request of NHS ~~Digital~~ England or after a defined period on completion of the project. [1 paragraph unchanged]

Processing activities

All organisations party to this ~~Agreement~~ DSA must comply with the Data Sharing Framework Contract requirements, including those regarding [20 words unchanged] and contractors of the Data Recipient who may have access to that ~~data).~~ Data). [1 paragraph unchanged] Record level ~~data~~ Data supplied by NHS ~~Digital~~ England to Wilmington Healthcare is not supplied to third parties not mentioned in this ~~agreement~~ DSA and therefore no identifiable data is either available nor can be inferred. Pseudonymised HES, ECDS, Mental Health ~~data~~ Data and DIDs ~~data~~ Data are securely downloaded via the NHS ~~Digital~~ England Secure Electronic File Transfer (SEFT) server and stored on a secure network drive in one location in England. Backups of this ~~data~~ Data are stored only within the storage locations specified and supplied to NHS ~~Digital~~ England during the security review of this application. [1 paragraph unchanged] Record level ~~data~~ Data is stored separately to aggregated data. All pseudonymised record level ~~data~~ Data is stored in the storage locations specified within this ~~agreement~~ DSA in England, with there being no possibility of users of any solutions accessing record level ~~data.~~ Data. For Quantis augmented analytics, the system will dynamically present aggregated, small number [19 words unchanged] and accessed only through the secure sign-on web link. No record level ~~data~~ Data is held on any customer’s local machine at any time, all pseudonymised record level ~~data~~ Data is stored in the storage locations specified within this ~~Agreement,~~ DSA, in England. All tools present only data aggregated and non-identifiable in line with the HES analysis guide. The hosting organisation have no access to the ~~data~~ Data on these servers and will not process any ~~data~~ Data for the purposes above. [1 paragraph unchanged] Wilmington Healthcare and Wilmington shared Service Ltd are wholly owned subsidiaries of Wilmington Plc. Access to the pseudonymised, record level ~~data~~ Data are only available for named, trained substantive employees of Wilmington Healthcare or [13 words unchanged] they need to load and maintain the dedicated data warehouse hosting this ~~data~~ Data (which is solely to produce an output for Wilmington Healthcare, and the [5 words unchanged] only be limited to those that have a need to process the ~~data~~ Data for the Wilmington Healthcare outputs specified), for Quality Assurance, or to analyse the ~~data~~ Data to produce the outputs specified within this ~~Agreement.~~ DSA. [20 paragraphs unchanged]

Expected output

OUTPUTS [4 paragraphs unchanged] • Provide detailed, ~~evidence based~~ evidence-based recommendations for how to improve care in specific organisations or therapy areas [3 paragraphs unchanged] Wilmington Healthcare ~~undertake~~ undertakes numerous projects utilising NHS ~~Digital~~ England data on a yearly or one-off bases. These outputs include: [19 paragraphs unchanged] For Quantis augmented analytics, the system dynamically presents aggregated, small number suppressed; [74 words unchanged] record level data is stored in the storage locations specified within this ~~agreement,~~ DSA, in England. All tools present only data aggregated and non-identifiable in line [15 words unchanged] these servers and will not process any data for the purposes above. [20 paragraphs unchanged] • IMPACT OF DEPRESSION TOOL: ~~Lundbeck Ltd~~ A Client commissioned Wilmington Healthcare to produce an Impact of Depression tool to better [19 words unchanged] valuable insights into the use of mental health services across the UK. [2 paragraphs unchanged] ~~• HEART VALVE DISEASE: Wilmington healthcare have developed business intelligence to highlight the number of people with aortic stenosis, and their current usage of hospital services.~~ • CLIENT & GP FEDERATION PARTNERSHIP: A Client of Wilmington were approached by the Lead for a large GP Federation, who was interested in working to improve the overall service given to their wound care patients. The Client used the dashboard, that was developed by Wilmington Healthcare, to highlight how many of their patients were accessing unplanned care services for two main areas, Lower Limb Ulcer and Cellulitis • DATA DASHBOARD- HARTMANN & GP FEDERATION PARTNERSHIP: HARTMANN were approached by the Lead for a large GP Federation, who was interested in working to improve the overall service given to their wound care patients. HARTMANN used the dashboard, that was developed by Wilmington Healthcare, to highlight how many of their patients were accessing unplanned care services for two main areas, Lower Limb Ulcer and Cellulitis ~~• MS EMERGENCY ADMISSIONS: A client used the Quantis solution to show MS Nurses the main reasons for emergency admissions in patients with MS.~~ [1 paragraph unchanged] • IDA AND HYPERKALAEMIA DASHBOARD: a resource that compiles a range of NHS ~~Digital~~ England activity data for patients with IDA and Hyperkalaemia, with and without concurrent [61 words unchanged] the condition, undergoing surgery and with a range of long term conditions. [5 paragraphs unchanged] DIABETES DASHBOARD: A user team have successfully integrated a Quantis diabetes dashboard into their Health Care Provider (HCP) conversations to identify and effect pathway redesign in local diabetes pathways, which have led to improved care for patients living with Diabetes. Due to the success of the HCP engagement with the data analysis this partnership has been established for over 5 years. Wilmington Healthcare has developed out this support through adding Inequalities analysis to support the NHS Core20PLUS5 conversation, supporting the local NHS DMU’s in their plans to improve patient care for those the most deprived 20% who experience higher than average levels of Diabetes and as such poorer outcomes. Iron Deficiency Anaemia (IDA) Dashboards: Wilmington collaborated with a life science industry partner to create a set of highly bespoke dashboards that illustrate the burden of iron-deficiency anaemia (IDA) within acute care, with specific focus on IDA coded alongside high blood-loss surgical activity. In addition to looking at the burden of disease, the tool can be used to interrogate where IDA has a tangible impact on patient outcomes within acute care, such as costs and bed days, so as to facilitate engagement with sub-national health systems where performance can be improved with modified treatment pathways. HEART FAILURE DATA MAPS There are now nearly 1 million people living with heart failure in the United Kingdom, with 200,000 new cases diagnosed each year. This is similar to the total number of people who are diagnosed with the four most common types of cancer – lung, breast, bowel and prostate - combined, and the prevalence of the condition is only set to increase in the coming years due to the effects of an ageing population and increasing rates of obesity. Heart failure is similarly the leading cause of hospital admissions in over 65s and costs the NHS £2 billion a year (around 2% of its total budget). As such the Heart Failure Data Map has been developed to demonstrate the impact of the condition to national and local stakeholders, to support consideration of steps that can be taken to improve heart failure service provision and care, to help improve outcomes and quality of life for patients, and similarly to help reduce the burden of the condition on the NHS.

Expected measurable benefits

It is not possible to provide full details of all expected measurable benefits and timings because many of the projects on which Wilmington Healthcare will use NHS ~~Digital data~~ England Data within the year have not yet been tendered. Wilmington Healthcare works on multiple projects, at short notice, for a large number of different national, regional and local organisations. [18 paragraphs unchanged] ~~HEART FAILURE DATA MAPS (delivery spring/summer 2022):~~ PRIMARY BILLIARY CIRRHOSIS (PBC) AND FOLLICULAR LYMPHOMA DISEASE INSIGHT REPORT: (Expected Autumn 2023) Wilmington healthcare are producing a disease insight report that will be used to demonstrate the current patient pathway for PBC and Follicular Lymphoma, highlighting challenges, trends, and variation across the system, and potential inadequacies of commissioned services versus patient need. The report will make recommendations for service redesign and help improve the availability of commissioned pathways for PBC and Follicular Lymphoma. Overall, the DIR will use evidence to make suggestions on how to improve care across the patient pathway. There are now nearly 1 million people living with heart failure in the United Kingdom, with 200,000 new cases diagnosed each year. This is similar to the total number of people who are diagnosed with the four most common types of cancer – lung, breast, bowel and prostate - combined, and the prevalence of the condition is only set to increase in the coming years due to the effects of an ageing population and increasing rates of obesity. MITRAL VALVE DISEASE (Expected Autumn 2023): Wilmington Healthcare is looking at the variation between sub optimal and optimal pathways and creating a patient scenario in Mitral Valve Disease. The project will highlight undiagnosed patient, lack of access to treatment and its impact on patients. How using new technologies such as Transcatheter Edge to Edge Repair for mitral valve disease, will enable more patients to be treated and have better health outcomes. We are developing a realistic patient scenario to show the difference between optimal and sub optimal treatment, highlighting how a fictional patient could have better outcomes if they had more timely access to relevant treatment. There will be a stakeholder meeting with clinicians to present data and highlight the gap in treatment of these patients and gain consensus around how those patients should be treated. ~~Heart failure is similarly the leading cause of hospital admissions in over 65s and costs the NHS £2 billion a year (around 2% of its total budget).~~ Mitral Regurgitation (MR) and Tricuspid Regurgitation (TR) Report (Expected Autumn 2023): Wilmington Healthcare is assessing the burden of Mitral Regurgitation (MR) and Tricuspid Regurgitation (TR) disease by identifying the number of diagnosed patients, treatment performed and specific outcomes (mortality, readmissions, NHS resources consumption, Length of stay) using HES analysis. The burden of MR and TR disease will also assess the access to treatment for both Degenerative and Functional MR & TR within England. The report will describe the current pathway for MR & TR patients in England and it will also set out the unmet need for MR & TR detection and treatment within England. The report will look to establish a case for change in order for NHS services to be commissioned to meet patient demand. As such the Heart Failure Data Map has been developed to demonstrate the impact of the condition to national and local stakeholders, to support consideration of steps that can be taken to improve heart failure service provision and care, to help improve outcomes and quality of life for patients, and similarly to help reduce the burden of the condition on the NHS. ~~BLOOD CANCER DASHBOARD (End of 2022):~~ Blood cancer is the fifth most common cancer in the UK and the third biggest cancer killer – taking more lives than breast or prostate cancer. There are currently around 250,000 people living with the disease and around 40,000 people diagnosed each year. By collating the latest available data in an accessible format, the Blood Cancer Dashboard is intended to support clinicians, commissioners, providers and system leaders to identify priority and potential improvement areas in their cancer services. The data is also intended to support policymakers to track progress against the ambitions set out within the NHS Long Term Plan to see the proportion of cancers diagnosed at stages 1 and 2 increase from half to three-quarters by 2028 and 55,000 more people each year surviving their cancer for at least five years after diagnosis. ~~METASTATIC BREAST CANCER PUBLICATION (Expected publication Autumn 2022)~~ Metastatic breast cancer (MBC) is an increasingly controllable disease, with increasing survivorship. Record collection currently focusses around deaths from cancer, whist often overlooking those surviving and living with breast cancer. Given the unknown number, the publication aims to ascertain the prevalence of people ling with breast cancer. This will highlight the need, as well as planning at a national level for the future. The report will cover national diagnoses and admissions of patients with breast cancer, and how this is changing over the previous years. It will highlight the impact of covid, and recovery. This work is in conjunction with a clinical member of the national cancer research institute breast clinical study group. The aim is to enable discussion as to how we can design services better, plan resources such as chemo units or specialist nurses, to optimise pathways, as well as increasing the quality of life of patients living with breast cancer.

Benefits reported

~~The work carried out by Wilmington Healthcare has benefited the provision of health and social care in England, some~~ Some of the most recent yielded benefits are illustrated here: ~~DISEASE INSIGHT REPORT: MEASURING THE BURDEN OF HOSPITALISATION IN MS (2017):~~ This lead to the development of a new educational initiative for neurologists so that they can benchmark their MS services and understand how improvements can be made. UCL Partners in London who have developed an integrated urinary tract infection pathway for people with MS between the hospital and 12 CCGs. This will fast track patients who have UTI symptoms. [1 paragraph unchanged] In South Tees the Parkinson's team has been using data to help make the case for on-going service investment and development. The team realised that they were failing to meet the needs of patients with complications such as motor fluctuations, dementia and psychosis and realised that 15-minute review appointments, every six months, was no way to deal with complex issues. And then they can identify areas for improvements. The Parkinson's team have worked with South Tees using the dashboard data to justify ongoing service investment and identified areas for improvement. They established a rapid-access, community-based unit with a mix of medical, nursing, therapist, and mental health services to address complex issues. The unit benchmarked hospital admissions and prescribing costs and demonstrated significant cost savings to the local CCGs. As a result, they have a fully commissioned Parkinson's Advanced Symptoms Unit that is cost-effective and delivering deliver excellent outcomes for patients and carers. With the help of a Health Foundation “Innovating for Improvement" grant, they set up a rapid-access, community-based unit, staffed by a mix of medical, nursing, therapist and mental health services. the plan was to fast-track struggling patients to the "Parkinson's Advanced Symptoms Unit" (PASU), following them up at home as required, to see if they could resolve crisis issues that might otherwise result in hospital admission. IMPACT OF DEPRESSION TOOL Hospital admissions were benchmarked on admissions and length of stay and included nursing home patients. Prescribing costs were also calculated. Armed with this baseline data the unit has been able to demonstrate significant cost savings to the local CCGs and, as such, are delighted to have a fully commissioned PASU service up and running for the foreseeable future. Depression is costly to the NHS and healthcare system, particularly in acute trusts not covered by block contract. Many patients with depression in specialist mental health services could be better managed in primary care. Our tool was used to support the Mental Health Lead for the GP federation in Northampton and stakeholders to make a case for change to improve depression management. Data showed that most costs related to depression were due to acute trust activity, especially for patients with comorbid long-term conditions. The case for change led to the prioritisation of depression locally and the subsequent development and implementation of an Integrated Depression Pathway which has led to an increase in the number of patients accessing social prescribing and receiving treatment in line with NICE recommendations. It is now significantly more cost-effective than many other matched CCG regions, and are optimistic that the PASU will continue to deliver excellent outcomes, both for commissioners and, more importantly, patients and carers. ~~IMPACT OF DEPRESSION TOOL- LUNDBECK LTD:~~ Depression has a significant cost and resource burden to the NHS and wider health and care system, with a great deal of variation between different areas. The majority of these costs fall outside mental health trusts and are associated with acute trusts not covered by block contract, and in many areas there is a high proportion of patients with depression in contact with specialist mental health services who sit within lower care clusters and could potentially be more appropriately managed in primary care services. This has helped increase the focus and priority placed on improving depression management at a local NHS level. This tool was later to support the mental health lead for the GP federation in Northampton, and stakeholders from the local Mental Health Trust, make a case for change for the improved management and prioritisation of depression. Data from the IoDR demonstrated that many of the costs associated with depression were related to secondary care activity, with the majority due to acute trust activity, rather than specialist mental health services. The data highlighted that many of the costs related to people with long term conditions who also had comorbid depression, and a subsequent analysis by the Commissioning Support Unit demonstrated that patients with depression and a long-term condition such as COPD were being admitted more frequently in Northampton and had higher healthcare costs than patients with a long-term condition alone. The case for change led to the prioritisation of depression locally and the subsequent development and implementation of an Integrated Depression Pathway which has led to an increase in the number of patients accessing social prescribing and receiving treatment in line with NICE recommendations. ~~SECONDARY PROGRESSIVE MULTIPLE SCLEROSIS (SPMS) REPORT:~~ This report has been used in over 40 different areas of the UK to enable discussion on how services need to address preventative care strategies. Over the time of collecting this data there has been a reduction in the number of bladder related emergency admissions since 2016/17, for instance Urinary Tract Infections (UTIs) have decreased from around 7,500 to 5,500 MS related non-elective UTI spells per year over this time period. [1 paragraph unchanged] Data analysis carried out to support the creation of an optimal care [8 words unchanged] a catheter inserted heart valve benefitted from improved quality of life, whilst ~~the NHS saved~~ saving the NHS £20,000 per ~~patient in costs,~~ patient, which could then be reallocated to other ~~areas of the NHS.~~ areas. Cost savings can be reallocated to the specific department where savings are [12 words unchanged] or beds, depending on the requirements of the organisation making the saving. ~~HEART VALVE DISEASE:~~ CLIENT & GP FEDERATION PARTNERSHIP: This intelligence provided by Wilmington illustrated the number of patients undergoing TAVI procedures for aortic stenosis (this is the least invasive and least costly overall treatment for AS). This enabled clinicians and commissioners to understand where they need to focus most attention on preventative strategies to identify and treat people with AS. This is one of the priorities for CVD in the NHS Long term Plan. The data presented within this Dashboard caused concern, leading to a care audit highlighting the number of people who had been diagnosed with a wound infection. Subsequent to this 3 months training and education events took place, and the data was again used to highlight which areas should be prioritised. Data was used with administration staff so they could take steps to ensure any future issues were highlighted and could be addressed. ~~DATA DASHBOARD- HARTMANN & GP FEDERATION PARTNERSHIP:~~ In addition, a series of Health Promotion initiatives were introduced, such as patient leaflets, posters and drop-in clinics that patients could access within surgeries. Forward 12 months from the comprehensive training programme that was initiated to the next annual data set. The data showed a marked drop in the number of wound care patients accessing unplanned care services. Overall, within the Federation numbers are down by 30%, with some practices achieving much higher numbers. The data presented within this Dashboard caused concern, and ultimately lead to an audit of care which highlighted the number of people who had been diagnosed with a wound infection. Subsequent to this a series of training and education events took place over three months, and the data was again used to highlight which areas should be prioritised. The data was also used with the administration staff so that they could take steps to ensure any future issues were highlighted and could be addressed. In addition, a series of Health Promotion initiatives were introduced, such as patient leaflets, posters and drop-in clinics that patients could access within the surgeries. Move forward 12 months from the comprehensive training programme that was initiated to the next annual data set. The data showed a marked drop in the number of wound care patients accessing unplanned care services. Overall, within the Federation numbers are down by 30%, with some practices achieving much higher numbers. [2 paragraphs unchanged] ~~NTM LUNG DISEASE:~~ Data highlighted the inequalities in care of patients with NTM-LD, and the data helped to establish how and where patients were being referred to in order to gain specialist treatment. It also demonstrated that whilst some patients are referred to specialist centres many are not, and this leads to inequality of access and care. The outputs led to the development of a specialized service design and implementation. Once approved it is hoped that the specialized service will lead to better efficiencies within the NHS and also give the outcome of equity of access and care to a high-risk group of respiratory patients. ~~IDA AND HYPERKALAEMIA DASBOARD:~~ Data from the dashboard has demonstrated the current care pathway for surgical patients undergoing high blood loss surgery and has helped a number of trusts begin to better address service change to meet the CQUIN target proposed for pre-assessment, screening and treatment of anaemia in advance of surgery, resulting in freeing up FTE time and beds that can be reallocated to some of the NHS Long Term Plan priorities [4 paragraphs unchanged] ~~NIEMANN-PICK (NPC) ALGORITHM:~~ IRON DEFICIENCY ANAEMIA (IDA) It is expected that less NPC patients will go undiagnosed for many years and will receive appropriate treatment more promptly. Proper treatment will make it less likely that the patient’s education and/or employment will be affected dependent on the severity of the illness. Accurate and prompt diagnosis will lessen unnecessary burden on the NHS. Clinical management of IDA prior to high blood loss surgery is critical to ensure timely patient discharge and robust patient outcomes. There is significant variation at a sub-national/trust level with respect to patient monitoring prior to surgery. Sub-optimal diagnosis and/or intervention in patients with IDA can have consequences with respect to their outcomes and utilisation of health system resource. By facilitating engagement with areas that have potential to improve their surgical pathways, the tool is designed to reduce disparity in surgical pathways where IDA diagnosis/intervention has an impact on patient lives. Through the use of our engagement tool, our client has been able to drive awareness around clinical management of IDA in surgical pathways, ensuring that these pathways are optimised across the healthcare system in England, and improving patient outcomes in areas where the presence of IDA in patients undergoing high blood loss surgery continues to have an impact. IMPACT OF ETHNICTY ON CANCER PATIENTS IN ENGLAND A client of Wilmington Healthcare produced a research article to highlight and explore the links between ethnicity and cancer care using the output Wilmington Healthcare had provided the client using HES. The client produced this research article because understanding the relationship between ethnicity and patient care for specific cancer types is vital if NHS England is to meet the UK governments priority to reduce health inequalities. The Client explored the impact of ethnicity on clinical severity, treatment costs and a range of patient activity indicators across three cancer types: chronic lymphocytic leukemia, multiple myeloma and prostate cancer. The research article demonstrated three core findings. South Asian patients have significantly higher clinical severity (CC scores) than the population average. Black and South Asian patients have higher average treatment costs, with the effect particularly strong for Black patients. Finally, COVID-19 had a disproportionate impact on ethnic minority patients. The output of the research article highlights key issues which contribute to support the NHS Core 20PLUS5 strategy and adds HES-driven evidence to the inequalities conversation. IMPACT OF DEPRESSION TOOL The IoD tool is helping a Wilmington client enable local health systems to understand the impact of depression through display of HES Data and allow comparison against similar systems across England. This is informing ICSs to prioritise depression services and better care pathways ‘beyond IAPT’ to support improved integrated care across the spectrum of patient severity. Market Access teams are working alongside local ICS commissioners to identify and effect positive changes to reduce the financial and clinical Impact of Depression on local services. Where depression/depressive disorder is coded, there is a huge impact on resource and capacity within acute care, raising the question as to whether there should be services in place to better manage depression in admitted patient care. The analysis Wilmington Healthcare has provided has provided a great means for the client to help drive significant change and increased collaboration with ICSs. METASTATIC BREAST CANCER PUBLICATION Partnering with a Consultant Oncologist from the Clatterbridge Cancer Centre, Wilmington Healthcare has contributed to a publication “Estimated Prevalence of Metastatic Breast Cancer in England 2016-2021”. Record collection currently focusses around deaths from cancer, whist often overlooking those surviving and living with breast cancer. Given the unknown number, the publication aims to ascertain the prevalence of people living with breast cancer. The publication estimated the number of people living with metastatic breast cancer in England, how this figure had changed over the previous five years, and the level of clinical activity created in the treatment and care of these people. The findings highlight that these numbers have increased steadily over the previous five years. Overall, the number of hospital spells, an indication of activity in hospitals for these patients, also increased over the five years. The outputs from the publication were commented on by the Chief Executive of Breast Cancer Now, stating that the estimate of people living with breast cancer in England is a landmark moment in understanding the true number of people living with secondary breast cancer in England. The estimate indicated that there are more people living with secondary breast cancer than the previous gross underestimate of the whole of the UK. The estimate supports the value of the NHS Funded metastatic breast cancer audit which will help support the NHS to design and plan services in an informed way.

Objective for processing

Wilmington Healthcare works across the healthcare community, including local and national NHS organisations and the private, pharma and third sectors.

The Data requested is necessary for the purposes of the legitimate interests pursued by the controller, except where such interests are overridden by the interests or fundamental rights and freedoms of the data subject which require protection of personal data, in particular where the data subject is a child covered by Article 6 (1)(f) of GDPR). Wilmington Healthcare Ltd is a commercial company and charges for its services (on a profit making basis) to specifically provide services to benefit NHS health and social care. The Data to which access is requested are proportionate and necessary and Wilmington Healthcare have completed a legitimate interest’s assessment (LIA) and are satisfied that the interests of the data subjects do not override their legitimate interests; that they would reasonably expect the processing and it would not cause unjustified harm. The data subjects’ interests and fundamental rights are protected through appropriate minimisation of fields and patient records being processed; pseudonymisation to minimise any risk of identifying individuals; protection of the data in a secure environment, and guaranteeing secure destruction at any stage at the request of NHS England or after a defined period on completion of the project.

The processing of the Data is essential - without it, Wilmington would not be able to positively impact healthcare to the same extent, with case studies highlighted in the recent NHS England Clinical Review: The Impact of data release through the Data Access Request Service. The Data will be used to support the NHS either directly through the delivery of tools / tables and reports or indirectly through non-NHS organisations, where solutions are provided with the NHS as the end beneficiary. Examples of this are provided in the benefits section below.

The Legal basis for processing of personal data relating to patient health is under Article 9(2)(j)of the GDPR - Processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject. The data subjects’ interests and fundamental rights are protected through appropriate minimisation of fields; protection of the data in a secure environment and guaranteeing secure destruction at any stage at the request of NHS England or after a defined period on completion of the project.

Wilmington Healthcare look to undertake projects that incorporate the Hospital Episode Statistics (HES), Emergency Care Data Set (ECDS), Mental Health Services Data Set (MHSDS) or Diagnostic Imaging Dataset (DIDs) Data with customers in the Life Sciences (pharmaceutical, medical device, bioscience), charity / not for profit / patient organisations, NHS organisations and academia. A workplan is supplied to NHS England that contains the project, details of the Data included, minimisation applied to the Data for that project along with the name of the customer and industry that they are classified within.

Wilmington Healthcare only provide the use of the outputs to these organisations to work with health organisations such as GPs, GP surgeries, Commissioners, Trusts (Acute and Mental Health), Area & Regional Teams, Vanguards, ICSs, Strategic Clinical Networks, Primary Care Networks (PCNs), Government & Government aligned groups, DH, NHS England, NICE and Academic Health Science Networks (AHSN), Social Care, Local Authorities, Health and Wellbeing Boards, NHS England Commissioning Support Units (CSUs), Patients and companies that specialise in providing services on behalf of the NHS, Charity and not-for-profit organisations.

Wilmington Healthcare will also be working in support of the delivery of New Models of Care and therefore will be required to work with customers and the new NHS bodies formed, such as the new Integrated Care Boards and Systems as well as other bodies that may form to provide support or services to these and the healthcare sector.

Wilmington Healthcare and Wilmington Shared Services Ltd are wholly owned subsidiaries of Wilmington Plc. Although Wilmington Plc is the parent company, Wilmington Plc do not have any influence on the means of purpose for data processing, nor do their employees process the Data. Wilmington Plc are not acting under any capacity as a either a Data Processor or Data Controller. Wilmington Healthcare are the data controller, they determine the way the data is processed, the purposes, and administer the advisory board who review each project. Wilmington Healthcare control all products produced with the Data and have the product revenue and costs going through it. Wilmington Shared Services Ltd substantively employ the central services team but do not control any products. Access to the pseudonymised, record level Data are only available for named, trained members of Wilmington Healthcare or Wilmington Shared Services Ltd staff, who are all substantively employed by either Wilmington Healthcare or Wilmington Shared Services Ltd.

The data processing Wilmington Shared Services Ltd carry out are described in the Operational Level Agreement, and include activities such as:

• Access control and user management to relevant data assets

• Management of HES/licenced Data in line with requirements of licence agreement for Wilmington Healthcare

Wilmington Healthcare processes record level, pseudonymised, non-sensitive, non-identifiable Hospital Episode Statistics (HES), ECDS, Diagnostic Imaging Dataset (DIDs) and sensitive Mental Health Data in order to:

1. Raise disease awareness, management and diagnosis through analysing data and publishing reports and tabulations which are available in the public domain.

3. Produce longitudinal rare disease analysis and reports which enable patients to receive the correct treatment for a condition that had not yet been diagnosed, e.g. no testing available, no definitive diagnosis reached by the clinician.

The Data will be used to support the NHS either directly through the delivery of tools and bespoke analysis or indirectly through non-NHS organisations, where solutions are provided with the NHS as the end beneficiary. Examples of this have been provided within the Expected Measurable Benefits section of this Data Sharing Agreement (DSA). Access to the pseudonymised, record level Data are only available for named, trained members of Wilmington Healthcare or Wilmington Shared Services Ltd staff, who are all substantively employed by either Wilmington Healthcare or Wilmington Shared Services Ltd.

Wilmington Healthcare and its Commissioning Excellence directorate have provided aggregated HES Data outputs for use in report production and commissioning support. Wilmington Healthcare has used (and wishes to continue to use) record level pseudonymised:

> Non-sensitive emergency care Data since 2019, using data from 2017/18 till current latest available releases.

> Non-sensitive HES Data since 2008, using data from 2006/07 till current latest available releases.

> Non-sensitive DIDs Data since 2013, using data from 2011/12 till current latest available releases.

> Sensitive Mental Health Data and since 2013, using data from 2011/12 till current latest available releases.

Wilmington Healthcare’s outputs are not limited to any particular age, region or any other subgroup or disease risk factor. However, the HES and ECDS Data has been restricted to only the relevant fields. NHS England has applied column level minimisation to the HES and ECDS extracts; i.e. not everything available has been requested by the applicant. For instance, in the HES APC datasets diagnosis and procedure codes are available in a variety of lengths (3-character, 4-character and the codes as provider by the submitter). Wilmington Healthcare has selected only to receive one variety of these. NHS England has worked closely with the applicant throughout previous iterations of the DSA to review and advise on efforts made to reduce the number of fields selected. Data shall be minimised on a project-by-project basis to ensure that only the appropriate fields are output. Wilmington Healthcare consider the number of years, geography, other data sources and fields required for each project to minimise that shared further.

Data has been selected after careful review of the fields requested, and that only necessary Data needed for purposes covered in this DSA are requested. Wilmington Healthcare review the Data provided and warehoused against data that is used to understand if further minimisation can be performed, ensuring requested data is adequate, relevant, and limited to what is necessary in relation to the purposes for which they are processed (data minimisation). It is deemed fields requested are required in order to provide accurate information and filter the appropriate scope of records to aggregate into outputs that contain only the relevant information. To assure this, all projects go through Wilmington Healthcare’s Advisory Board, containing lay members, who assess each new project against our NHS England DPIA and the DSA to ensure alignment and ensure no variations or new uses of the Data. Each advisory board application asks the submitter to consider if any other data, such as that in the public domain can be used to further minimise data sharing outside that required. This is further assured by assessing applications against Wilmington Healthcare's Data Protection Impact Assessment for each new project and assessing compliance against the data minimisation principle in line with UK GDPR.

For points 1 and 2 above, Wilmington Healthcare outputs will only contain the most recent 5 full years of Data (plus the most recent provisional Data). At the point the most recent provisional Data becomes finalised, the oldest year of Data will be removed from the outputs.

For point 3 above, 10 years of Data are required as Wilmington Healthcare undertakes projects for rare disease studies, where a specific diagnosis for that condition is not available. This requires detailed analysis of patient diagnoses over the period of 10 years in order to develop patterns of diagnoses / procedures for patients and create a cohort of patients most likely to have a rare condition in order for them to be tested and treated appropriately. Wilmington Health require this 10-year period of Data as these conditions impact less than 5 in 10,000 patients, therefore, this length of time is necessary to develop a robust cohort of patients for analysis. Under this DSA, only aggregated outputs with small numbers suppressed will be produced in line with HES Analysis Guidance. Anything other than this will require a separate application and DSA with NHS England .

Data is used in:

> Analysis Phase:

Assess (a) pathway(s) and/or organisation(s) performance against similar comparisons and to understand where change could be required to achieve Quality, Innovation, Productivity and Prevention (QIPP) or Getting It Right First Time (GIRFT) planning or implement NHS long term plans / strategies.

Data isn’t used to specifically feed into the GIRFT programme. Instead, the Data is used to look at and assess the variation in organisations' activity where there are specific GIRFT measures available in HES. For example, where there are Operating Procedure Codes Supplement (OPCS) codes mentioned in a GIRFT report, looking for those codes in the data and comparing this with activity levels and best practice to understand areas of variance, and where an organisation could focus their planning to better reach or implement GIRFT opportunities/strategies.

Wilmington Health do not specifically look at anything directly with GIRFT, however have mapped data from trust to GIRFT regions to understand where there may be variation to benchmarks and opportunities for comparison with trusts in these areas. Wilmington Health have also looked at measures available in HES that are also talked about under GIRFT programmes, (e.g. procedures) again not specifically with GIRFT.

> Planning Phase:

Communicate with all NHS stakeholders in explaining the rationale for change and to create engagement with users to understand their needs in the commissioning, healthcare and service improvement process.

Identify local health economies which are managing a specific disease effectively. To use this data to quantify what success will look like in terms of reduced inappropriate hospital activity and cost plus decreased comorbidity patient disease

Apply predictive modelling where appropriate to understand the potential impact for patients plus the health and social care system by adopting a clinical pathway or service design which is optimal.

> Implementation Phase:

Enable continual monitoring, communication and education with all NHS stakeholders as to the rationale and requirements for a new clinical pathway or service.

> Review Phase:

Review progress on a frequent basis and to make any necessary, close to real-time, changes to the pathway or service to optimise efficiency.

Wilmington Healthcare undertake numerous projects utilising NHS England Data on a yearly or one-off bases. Insights including HES Data contain Quantis outputs.

Access to Wilmington Healthcare Quantis solutions that contain HES, ECDS, MHSDS or DIDs Data will be underpinned by additional terms and conditions that ensure the Data are used for the appropriate purposes, including:

> Where appropriate, an official NHS/industry joint working contract to be put in place.

> The same aggregated HES, ECDS, Mental Health Data or DIDs Data outputs to be made available, if requested, to all health and social care organisations, irrespective of their value to the company

The Quantis system is only to be provided to a restricted number of named users, who have undergone and passed protocol training within one month of access being granted.

All named users to authenticate sign on through unique password protection.

Life Science Companies to abide by the established Prescription Medicines Code of Practice Authority (PMCPA) Code of Practice and DH governance on the use of healthcare data.

These outputs assist health and social care in creating and delivering the Quality, Innovation, Productivity and Prevention (QIPP) priorities, Five Year Forward View Planning, implementation of NICE Health Technology Appraisals (HTAs), Sustainability and Transformation Plans, New Models of Care and local Five Year Commissioning Plans and Joint Strategic Needs Assessment (between health and social care), optimal pathway modelling as well as GIRFT service reviews.

The ability to provide feedback in relative real time on the success of a new pathway or new service, is critical to the realisation of the redesign project. This means a monthly breakdown and routine data refresh at record level will be required. Monthly Data is vital to show changes at an organisational level such as ICSs what is happening in their organisation and how that is changing, in as close to real time as available. Understanding and elucidating actionable insights on challenges they meet, or impacts of service change they make, based off data, makes a stronger case for service improvement. Monthly trends are important in all stages of change – analysis, planning, implementation and review. Working with out-of-date data, may mean decisions are taken without knowing the most recent situation available. An example of this would be during the covid period, and through recovery, where organisations have had to rapidly reconfigure their services and some are just “keeping their head above water”, being able to identify blockers and bottle necks to services in this upheaval period can only be seen with the most recently available data, as it comes through, and alerts to future impacts can be assessed.

Wilmington Healthcare has complete editorial control meaning that the outputs are developed completely independently of the commissioner of the work and there is no bias in terms of the findings.

For the avoidance of doubt, the outputs produced by Wilmington that incorporate the HES, Mental Health Data and DIDs Data supplied under this license by NHS England will not:

• Relate HES, Mental Health Data or DIDs Data outputs to the use of commercially available products, an example being the prescribing of individual pharmaceutical products

• Include any analysis on the impact of commercially available products an example being individual pharmaceutical product

For Data from the Mental Health (MHSDS, MHLDDS, MHMDS) Data sets, and any Mental Health Data linked to HES or SUS, the following disclosure control rules will be applied:

National-level figures only may be presented unrounded, with small number suppression;

- Suppress all numbers between 1 and 7

- Round all other numbers to the nearest 5

Percentages can be calculated based on unrounded values, but need to be rounded to the nearest integer in any outputs.

In addition for Learning Disability Data in Mental Health (MHSDS, MHLDDS, MHMDS), the England-level Data also must apply the suppression of all numbers between 0 and 5, and rounding of other numbers to the nearest 5.

Wilmington Healthcare requires Data from NHS England for the purposes of these legitimate interests. Processing personal data is necessary for Wilmington Healthcare’s legitimate interests which are described in this application. The Data to which access is requested are proportionate and necessary to achieve those interests. Wilmington Healthcare have completed a legitimate interest’s assessment (LIA) and are satisfied that the interests of the data subjects do not override their legitimate interests; that they would reasonably expect the processing and it would not cause unjustified harm. The data subjects interests and fundamental rights are protected through appropriate minimisation of fields and patient records being processed; pseudonymisation to minimise any risk of identifying individuals; protection of the data in a secure environment, and guaranteeing secure destruction at any stage at the request of NHS England or after a defined period on completion of the project.

Wilmington Healthcare have assessed this against the ICO’s checklist (https://ico.org.uk/for-organisations/guide-to-thegeneral-data-protection-regulation-gdpr/lawful-basis-for-processing/legitimate-interests/) and are content that the requirements are met.

Expected output

OUTPUTS

All outputs produced by Wilmington Healthcare will be aggregated with small numbers supressed in line with HES analysis guidance and aim to:

• Recommend how to achieve an overall improvement in patient outcomes, including reduced comorbid disease, mortality, Length of Stay (LOS), hospital acquired infection. Upon the implementation of recommendations Wilmington would expect there to be benefits to the provision of health and social care.

• Outline the benefits for the appropriate movement of patient treatment from inpatient to outpatient or primary care

• Demonstrate the reduction of the patients requiring more care in social care by implementing effectively designed clinical pathways and services using to prevent patients leaving healthcare and becoming a burden on social care without effective treatment

• Provide detailed, evidence-based recommendations for how to improve care in specific organisations or therapy areas

• Present to healthcare professionals the information required to understand their own organisation’s performance to enable them to reduce cost whilst simultaneously delivering best practice healthcare

• Allow clinicians and commissioners to interpret the Data and take appropriate actions to safeguard against excess mortality, reduce mortality rates and improve the quality of care where possible

Wilmington Healthcare undertakes numerous projects utilising NHS England data on a yearly or one-off bases. These outputs include:

Reports:

Disease Insight Reports

Costed Integrated Pathways

Infographics

Presentations

Submissions to peer review journals

Tabulations:

Excel based outputs

Tableau based outputs

Dashboards:

Quantis portal system

Online dashboards

Offline dashboards (MS Excel, Tableau or other BI software)

Maps

Augmented analytics

Outputs typically contain analysis of a disease and/or its management, predominately in secondary care. The methodology of the analysis is based on in-house research undertaken by Wilmington Healthcare using non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable, record level data Outputs often contain patient cohort analysis which requires an aggregation of pseudonymised, non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable record level data. The ability to be able to see diagnosis, procedures and Healthcare Resource Groups (HRGs) by multiple individual episodes at record level is imperative to being able to undertake the analysis for these outputs.

Quantis system:

Quantis portal system is an electronic online commissioning, healthcare and service improvement support solution generating outputs that are aggregated, small number suppressed in line with the HES Analysis Guide, non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable data as the outputs. The portal contains visualisations of data, to help translate data into a digestible format. This is particularly desired by those interacting with the data whose primary role is not data focused. The system contains data that is minimised using the recommended guidelines and filters the data into visualisations that are easy to understand. The Quantis portal outputs are used by registered, authenticated users who have access under specific terms and conditions, over a sustained period, typically of one to two years. Recipients of the portal system are predominantly pharmaceutical companies (~75%) who use this with their healthcare provider customers, but also include charities and the NHS directly.

The Quantis Portal system is only provided to a restricted number of named users, who have undergone and passed protocol training within one month of access being granted. For Quantis Dashboards record level data are loaded into a data warehouse, on a dedicated private, non-external facing server, prior to aggregation into a separate database (both of which are stored independently in England). The final aggregated, small number suppressed; non-identifiable outputs are uploaded to professionally hosted user-facing servers in England. These professionally hosted servers are provisioned purely for hosting purposes. The hosting organisation have no access to the data on these servers and will not process any data for the purposes above.

For Quantis augmented analytics, the system dynamically presents aggregated, small number suppressed; non-identifiable outputs in line with the HES analysis guide to a restricted number of named users, who have undergone and passed protocol training prior to access being granted. Outputting the data into tabulations and visualisations, minimised using the recommended guidelines. The system is held entirely on the listed servers and accessed only through the secure sign-on web link. No record level data is held on any customer’s local machine at any time, all pseudonymised record level data is stored in the storage locations specified within this DSA, in England. All tools present only data aggregated and non-identifiable in line with the HES analysis guide. The hosting organisation have no access to the data on these servers and will not process any data for the purposes above.

Other Quantis dashboards may be hosted on microsites, a small website, where the visualisation may be publicly accessible, such as for a charity website – where the purpose is to gain awareness for healthcare related challenges and as such may be accessed by health care professionals or members of the public – for systems such as this record level data are loaded into a data warehouse, on a dedicated private, non-external facing server, prior to aggregation into a separate database (both of which are stored independently in England). The final aggregated, small number suppressed; non-identifiable outputs are uploaded to professionally hosted user-facing servers in England. These professionally hosted servers are provisioned purely for hosting purposes. The hosting organisation have no access to the data on these servers and will not process any data for the purposes above.

For most outputs listed, Wilmington Healthcare require 5 years of pseudonymised, non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable record level data to be able to:

• Comprehend how spells break into episodes at record level, where an episode is a component of spell, or stay in hospital. A spell starts with an admission to hospital and ends with a discharge. Within this, patients have one or more periods of care each under a different consultant (or consulting team), called an episode. To enable all comorbid conditions and procedures to be rolled into aggregated, non-identifiable, patient cohorts. This allows users to analyse the existing pathway against modelled pathways in detail, to portray disease progression over time at patient cohort level, and to study the impact of disease management over time.

• Establish what HRGs are being applied to each episode in a spell at record level, prior to aggregating into user output data. This allows users to view whether a more efficient tariff or route of treatment could be used.

• Provide an aggregated way of demonstrating how the pathway, disease or service being analysed intricately fits with related/interrelated pathways. For example, in diabetes pathway and disease analysis, the areas of obesity, cardiovascular disease, ophthalmology, renal etc. will also require analysis. For each health and social care geography, interrelated pathways are different, meaning the complete spectrum of ICD10, OPCS4 and HRG codes is required.

• Analyse patient outcomes such as comorbid disease, procedures and unnecessary hospital activity (admissions, excess bed days, readmissions) at an individual level prior to aggregating into predefined cohorts.

• Produce a system that allows users to compare at aggregated level one organisation, geography or patient cohort against another with similar characteristics (socio, demographic and ethnicity). This allows users to understand what best practice can look like.

However, 10 years of data are required as Wilmington Healthcare undertakes projects for rare disease studies, where a specific diagnosis for that condition is not available. Wilmington Healthcare require this 10-year period of data as these conditions impact less than 5 in 10,000 patients, therefore, this length of time is necessary to develop a robust cohort of patients for analysis.

Before Wilmington Healthcare sign any terms and conditions for outputs that contain HES, Mental Health data or DIDs data, the purpose for the output is reviewed by the internal advisory board. The advisory board assess the potential for each project to benefit the health and social care sector before approving. The advisory board includes independent lay members.

For the Quantis portal system, access works as follows:

Each user organisation agrees a contract with Wilmington Healthcare stipulating Terms and Conditions (T&Cs) as specified within the Objective for Processing (5a) section. This contract provides additional safeguards clearly explaining data privacy, and acceptable use of the system and the data it contains. The agreement contains but is not limited to:

The outputs to be used exclusively for the purpose of provision of outputs to assist health and social care organisations.

The outputs are not to be used principally for commercial purpose

The same aggregated HES, Mental Health data or DIDs data outputs to be made available, if requested, to all health and social care organisations, irrespective of their value to the company

The users of the Quantis system are provided with HES Protocol training, which is an assessment that demonstrates that users know the regulations plus T&Cs relating to use of HES, Mental Health data or DIDs data outputs. Users are provided with secure login details (username and password) that they must authenticate to access the Quantis system.

Wilmington Healthcare Customer Service team are responsible for user management, with the organisation’s commitment, all existing leavers and removing from the Quantis system.

Examples of outputs produced using NHSD data by Wilmington Healthcare, with case studies published online:

• DISEASE INSIGHT REPORTS: Wilmington Healthcare, in conjunction with the Multiple Sclerosis Trust (MS Trust) have published a Disease Insight Report into the burden of hospitalisations in multiple sclerosis. This provided a detailed analysis of HES data. This report, first launched at the MS Trust Annual Conference, and was also shared by Public Health England and the National Clinical Director for Neurology. All disease insight reports are made available to the general public

• NIEMANN- PICK C (NPC) ALGORITHM: Wilmington Healthcare have produced an algorithm that is used to search HES data using the NPC Clinical Suspicion Index to identify patients who may have attenuated Niemann-Pick C (NPC). NPC is a neuro-visceral lipid storage disorder which causes progressive neurological disease. The disease usually starts in childhood and usually results in death in the late second or third decade from aspiration pneumonia. However, there are also many patients who have 'attenuated' forms of the disease which present later in life with some atypical clinical features and slow progression. The Suspicion Index lists the symptoms and signs of NPC. The diagnostic tool has been validated and published (Neurology 2012;78(20):1560-7). This has identified the ICD-10 codes which are associated with each symptom in the Suspicion Index and then used combinations of these codes to search for patients with a high suspicion of a diagnosis of NPC.

• DATA-DRIVEN DASHBOARD, PARKINSON’s UK: Wilmington Healthcare have worked in conjunction with Parkinson’s UK to build a data-driven dashboard that aims to enable individual CCGs to understand their performance in Parkinson’s management.

• IMPACT OF DEPRESSION TOOL: A Client commissioned Wilmington Healthcare to produce an Impact of Depression tool to better understand the use of mental health services across the UK. This tool is now in use and has provided valuable insights into the use of mental health services across the UK.

• SECONDARY PROGRESSIVE MULTIPLE SCLEROSIS (SPMS) IMPACT REPORT: In 2019 Wilmington Healthcare produced a SPMS impact report to raise awareness of the impact of the needs of this client group. The report will be launched in parliament and will provide recommendations for changing practice. The report contains a specific analysis of each individual UK wide commissioning group/health board numbers of people likely to reside with the condition to enable local understanding of the condition impact and likely service requirements. Additionally, the articles have been published in a peer reviewed journal which highlight the need for comprehensive health needs assessment in patients with conditions like MS. Wilmington Healthcare have held an MS nurse advisory board to help understand the problems nurses are facing with managing increasing caseloads within their work areas. Data has been supplied to nurses to support service changed and pathway development.

•CVD HEART VALVE DISEASE: In partnership with the charity Heart Valve Voice and an expert clinical stakeholder group Wilmington Healthcare developed an optimal pathway ‘Malcolm’s story’ using the Right Care methodology and a Delphi consensus process (a well-established approach to research, identifying a consensus view across subject experts which encourages reflection among participants, who share opinions and reconsider their opinion based on the anonymised opinions of others, ultimately resulting in a one consensus view) to show depict the difference between treating someone with aortic stenosis and providing palliation for heart failure. The means to develop the pathway was based on analysis of HES data for aortic stenosis comparing patient pathways and patient outcomes. The work has been presented at three national conferences including the Kings Fund and the British Cardiovascular Society Annual Conference in Manchester.

• CLIENT & GP FEDERATION PARTNERSHIP: A Client of Wilmington were approached by the Lead for a large GP Federation, who was interested in working to improve the overall service given to their wound care patients. The Client used the dashboard, that was developed by Wilmington Healthcare, to highlight how many of their patients were accessing unplanned care services for two main areas, Lower Limb Ulcer and Cellulitis

• NTM LUNG DISEASE (NTM-LD) AND NON-CYSTIC FIBROSIS BRONCHIECTASIS: Wilmington Healthcare Ltd have provided their client with tabulations that compiles a range of HES data for NTM Lung disease (NTM-LD) and Non Cystic fibrosis Bronchiectasis, allowing the costs and activity associated with depression to be understood. Working with opinion leaders in rare respiratory disease the tabulations have been used to better understand the geographical spread of NTM-LD, an orphan respiratory disease. This in turn has been helpful in the design of an optimal patient pathway and the design of a service to specifically help a small but vulnerable patient population.

• IDA AND HYPERKALAEMIA DASHBOARD: a resource that compiles a range of NHS England activity data for patients with IDA and Hyperkalaemia, with and without concurrent comorbidities, allowing the activity and resource impact associated with each condition to be better understood. The data has been shared in easy to use dashboards – which present data from a range of perspectives – key for understanding and changing service to better meet patient need; comparing elective v non-elective stays, cost, LOS, readmission rates etc. for patients with and without the condition, undergoing surgery and with a range of long term conditions.

• HEART FAILURE DATA MAPS: A Client of Wilmington Healthcare developed the Heart Failure Data Map. To support this work Wilmington Healthcare provided the data for this resource, including population projections, a granular breakdown of hospital admissions and costs (by scheduled and emergency admissions, sex, and age), as well as how admission rates have increased or decreased over time. Finally, a total mortality figure and mortality indicator value is provided for each area, which provides an estimated number of deaths in a particular area based on its population size.

• BLOOD CANCER DASHBOARD: A client of Wilmington Healthcare developed the Blood Cancer Dashboard. To support the client to keep the resource as up to date as possible, Wilmington Healthcare have recently provided hospital episode statistics (HES) to include on the Blood Cancer Dashboard in a new ‘hospital admissions’ tab. This data provides more detailed information on elective and non-elective admissions and readmissions across individual blood cancers and for blood cancers as a group, to be compared with admissions for the UK’s four most common cancers.

• DEMENTIA PATHWAY TOOLKIT: In partnership with the University of Manchester Institute of the Brain, the Dementia Academy, NHS England Greater Manchester Network a piece of work was required to enable understanding of which patient pathways should change to address common issues relating to emergency hospital admissions. The data has spearheaded the development of a multidisciplinary, multi-agency integrated dementia pathway toolkit which highlights trigger factors for GPs, that might precipitate hospital admission so that these can be avoided. Patients and carers were central to the production of the work along with organisations including Greater Manchester Police, ambulance service and voluntary sectors were involved. All 12 CCGs in the area have participated and service transformation is underway. The findings have also been shared with other heath economies.

• DIABETES HEALTH ECONOMY TOOL: A client and Wilmington developed a diabetes dashboard system, highlighting variation in metrics such as non-elective admissions in diabetic patients, as well as understanding how related diabetic co-morbidities such as hypoglycaemia can affect hospital admissions. The dashboards are supported by other data sources such as the National Diabetes Audit (NDA) to minimise the HES data used and give a primary/secondary care view for the business case. The outputs from these dashboards were used to support the case for a band 7 diabetic specialist nurse, and recently have been successful in receiving funding and recruiting into a substantive band 7 post.

• Chronic Kidney Disease (CKD): Published in October 2020, in partnership with a Kidney Care UK and an expert clinical stakeholder group Wilmington Healthcare developed an optimal pathway ‘Sid’s story’ using the Right Care methodology and a Delphi consensus process to provide clarity on the issues faced in managing CKD when dialysis has to be the modality of choice by bringing the scenarios to life in a very realistic way. The pathways compared optimal effective referral protocols vs referral breakdown and loss to the system. The resource provides practical guidance on what everyone can do to improve care and reduce the risks for patients in a systematic and efficient way.

DIABETES DASHBOARD: A user team have successfully integrated a Quantis diabetes dashboard into their Health Care Provider (HCP) conversations to identify and effect pathway redesign in local diabetes pathways, which have led to improved care for patients living with Diabetes. Due to the success of the HCP engagement with the data analysis this partnership has been established for over 5 years. Wilmington Healthcare has developed out this support through adding Inequalities analysis to support the NHS Core20PLUS5 conversation, supporting the local NHS DMU’s in their plans to improve patient care for those the most deprived 20% who experience higher than average levels of Diabetes and as such poorer outcomes.

Iron Deficiency Anaemia (IDA) Dashboards: Wilmington collaborated with a life science industry partner to create a set of highly bespoke dashboards that illustrate the burden of iron-deficiency anaemia (IDA) within acute care, with specific focus on IDA coded alongside high blood-loss surgical activity. In addition to looking at the burden of disease, the tool can be used to interrogate where IDA has a tangible impact on patient outcomes within acute care, such as costs and bed days, so as to facilitate engagement with sub-national health systems where performance can be improved with modified treatment pathways.

HEART FAILURE DATA MAPS

Heart failure is similarly the leading cause of hospital admissions in over 65s and costs the NHS £2 billion a year (around 2% of its total budget).

As such the Heart Failure Data Map has been developed to demonstrate the impact of the condition to national and local stakeholders, to support consideration of steps that can be taken to improve heart failure service provision and care, to help improve outcomes and quality of life for patients, and similarly to help reduce the burden of the condition on the NHS.

Benefits reported

Some of the most recent yielded benefits are illustrated here:

DATA DRIVEN DASHBOARD, PARKINSONS UK:

The Parkinson's team have worked with South Tees using the dashboard data to justify ongoing service investment and identified areas for improvement. They established a rapid-access, community-based unit with a mix of medical, nursing, therapist, and mental health services to address complex issues. The unit benchmarked hospital admissions and prescribing costs and demonstrated significant cost savings to the local CCGs. As a result, they have a fully commissioned Parkinson's Advanced Symptoms Unit that is cost-effective and delivering deliver excellent outcomes for patients and carers.

IMPACT OF DEPRESSION TOOL

Depression is costly to the NHS and healthcare system, particularly in acute trusts not covered by block contract. Many patients with depression in specialist mental health services could be better managed in primary care. Our tool was used to support the Mental Health Lead for the GP federation in Northampton and stakeholders to make a case for change to improve depression management. Data showed that most costs related to depression were due to acute trust activity, especially for patients with comorbid long-term conditions. The case for change led to the prioritisation of depression locally and the subsequent development and implementation of an Integrated Depression Pathway which has led to an increase in the number of patients accessing social prescribing and receiving treatment in line with NICE recommendations.

CVD HEART VALVE DISEASE:

Data analysis carried out to support the creation of an optimal care pathway showed that patients who received intervention from a catheter inserted heart valve benefitted from improved quality of life, whilst saving the NHS £20,000 per patient, which could then be reallocated to other areas. Cost savings can be reallocated to the specific department where savings are made, which may fund workforce or additional equipment such as specialise equipment or beds, depending on the requirements of the organisation making the saving.

CLIENT & GP FEDERATION PARTNERSHIP:

The data presented within this Dashboard caused concern, leading to a care audit highlighting the number of people who had been diagnosed with a wound infection. Subsequent to this 3 months training and education events took place, and the data was again used to highlight which areas should be prioritised. Data was used with administration staff so they could take steps to ensure any future issues were highlighted and could be addressed.

In addition, a series of Health Promotion initiatives were introduced, such as patient leaflets, posters and drop-in clinics that patients could access within surgeries. Forward 12 months from the comprehensive training programme that was initiated to the next annual data set. The data showed a marked drop in the number of wound care patients accessing unplanned care services. Overall, within the Federation numbers are down by 30%, with some practices achieving much higher numbers.

MS EMERGENCY ADMISSIONS:

This work revealed that the main reason for emergency admission in MS patients is Urinary Tract Infections. These admissions are estimated to cost the NHS over £40k per year. This information was used as part of a business case for a portable bladder scanner. Since this time there has been a reduction in UTI emergency admissions, by around 2000 spells a year, saving patients and their families the distress of a hospital stay.

DIABETES HEALTH ECONOMY TOOL:

CARDIAC DEVICES GIRFT REGION TOOL:

An NHS client of Wilmington Healthcare developed a data tool to support with work they are doing with a Cardiac Provider Collaborative in South London. The tool enabled and supported the clinical council to understand, quantify and then drive down unwarranted variation and create savings. The outcome of the clinical council is projected to be £1.3 million of savings per year which can be utilised for bettering outcomes of patients in the system. Feedback from a member of the clinical council includes "HES data was one of the fundamental data sets for the cardiac clinical council, and ultimately on what its successful outcome was based". These savings can be reinvested in optimal care pathways for patients at the provider organisations, the money saved being more efficiently used by the trusts for both workforce investment and specialist equipment provision. Savings where there is deficit already existing will also be absorbed to continue the provision of services to existing patients.

IRON DEFICIENCY ANAEMIA (IDA)

Clinical management of IDA prior to high blood loss surgery is critical to ensure timely patient discharge and robust patient outcomes. There is significant variation at a sub-national/trust level with respect to patient monitoring prior to surgery. Sub-optimal diagnosis and/or intervention in patients with IDA can have consequences with respect to their outcomes and utilisation of health system resource. By facilitating engagement with areas that have potential to improve their surgical pathways, the tool is designed to reduce disparity in surgical pathways where IDA diagnosis/intervention has an impact on patient lives. Through the use of our engagement tool, our client has been able to drive awareness around clinical management of IDA in surgical pathways, ensuring that these pathways are optimised across the healthcare system in England, and improving patient outcomes in areas where the presence of IDA in patients undergoing high blood loss surgery continues to have an impact.

IMPACT OF ETHNICTY ON CANCER PATIENTS IN ENGLAND

A client of Wilmington Healthcare produced a research article to highlight and explore the links between ethnicity and cancer care using the output Wilmington Healthcare had provided the client using HES. The client produced this research article because understanding the relationship between ethnicity and patient care for specific cancer types is vital if NHS England is to meet the UK governments priority to reduce health inequalities. The Client explored the impact of ethnicity on clinical severity, treatment costs and a range of patient activity indicators across three cancer types: chronic lymphocytic leukemia, multiple myeloma and prostate cancer. The research article demonstrated three core findings. South Asian patients have significantly higher clinical severity (CC scores) than the population average. Black and South Asian patients have higher average treatment costs, with the effect particularly strong for Black patients. Finally, COVID-19 had a disproportionate impact on ethnic minority patients. The output of the research article highlights key issues which contribute to support the NHS Core 20PLUS5 strategy and adds HES-driven evidence to the inequalities conversation.

IMPACT OF DEPRESSION TOOL

The IoD tool is helping a Wilmington client enable local health systems to understand the impact of depression through display of HES Data and allow comparison against similar systems across England. This is informing ICSs to prioritise depression services and better care pathways ‘beyond IAPT’ to support improved integrated care across the spectrum of patient severity. Market Access teams are working alongside local ICS commissioners to identify and effect positive changes to reduce the financial and clinical Impact of Depression on local services. Where depression/depressive disorder is coded, there is a huge impact on resource and capacity within acute care, raising the question as to whether there should be services in place to better manage depression in admitted patient care. The analysis Wilmington Healthcare has provided has provided a great means for the client to help drive significant change and increased collaboration with ICSs.

METASTATIC BREAST CANCER PUBLICATION

Partnering with a Consultant Oncologist from the Clatterbridge Cancer Centre, Wilmington Healthcare has contributed to a publication “Estimated Prevalence of Metastatic Breast Cancer in England 2016-2021”. Record collection currently focusses around deaths from cancer, whist often overlooking those surviving and living with breast cancer. Given the unknown number, the publication aims to ascertain the prevalence of people living with breast cancer. The publication estimated the number of people living with metastatic breast cancer in England, how this figure had changed over the previous five years, and the level of clinical activity created in the treatment and care of these people. The findings highlight that these numbers have increased steadily over the previous five years. Overall, the number of hospital spells, an indication of activity in hospitals for these patients, also increased over the five years. The outputs from the publication were commented on by the Chief Executive of Breast Cancer Now, stating that the estimate of people living with breast cancer in England is a landmark moment in understanding the true number of people living with secondary breast cancer in England. The estimate indicated that there are more people living with secondary breast cancer than the previous gross underestimate of the whole of the UK. The estimate supports the value of the NHS Funded metastatic breast cancer audit which will help support the NHS to design and plan services in an informed way.

DARS-NIC-16016-Y9H1D-v12.2 30 August 2022 to 29 August 2023

Title: Hospital Episode Statistics (HES), ECDS, Diagnostic Imaging Dataset (DIDs) and sensitive Mental Health data to assist disease awareness, commissioning, and help to produce longitudinal rare disease analysis and reports
Commercial: Yes
Sublicensing: No
Datasets: 11
Files released: 96

What changed from DARS-NIC-16016-Y9H1D-v11.6

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

Fields changed from DARS-NIC-16016-Y9H1D-v11.6
Field	Was	Became
Start date	~~2022-06-29~~	2022-08-30
End date	~~2022-08-29~~	2023-08-29

Objective for processing

[1 paragraph unchanged] The data requested is necessary for the purposes of the legitimate interests [61 words unchanged] to specifically provide services to benefit NHS health and social care. The ~~processing~~ data to which access is requested are proportionate and necessary and Wilmington Healthcare have completed a legitimate interest’s assessment (LIA) and are satisfied that the interests of the data ~~is essential - without it, Wilmington~~ subjects do not override their legitimate interests; that they would reasonably expect the processing and it would not ~~be able~~ cause unjustified harm. The data subjects’ interests and fundamental rights are protected through appropriate minimisation of fields and patient records being processed; pseudonymisation to ~~positively impact healthcare to~~ minimise any risk of identifying individuals; protection of the ~~same extent, with case studies highlighted~~ data in a secure environment, and guaranteeing secure destruction at any stage at the ~~recent~~ request of NHS Digital ~~Clinical Review: The Impact~~ or after a defined period on completion of ~~data release through~~ the Data Access Request Service. The data will be used to support the NHS either directly through the delivery of tools / tables and reports or indirectly through non-NHS organisations, where solutions are provided with the NHS as the end beneficiary. Examples of this are provided in the benefits section below. project. The processing of the data is essential - without it, Wilmington would not be able to positively impact healthcare to the same extent, with case studies highlighted in the recent NHS Digital Clinical Review: The Impact of data release through the Data Access Request Service. The data will be used to support the NHS either directly through the delivery of tools / tables and reports or indirectly through non-NHS organisations, where solutions are provided with the NHS as the end beneficiary. Examples of this are provided in the benefits section below. [3 paragraphs unchanged] Wilmington Healthcare will also be working in support of the delivery of [6 words unchanged] will be required to work with customers and the new NHS bodies formed, such as ~~they form that yet remain unnamed. For example,~~ the new Integrated Care ~~Providers (ICS~~ Boards and ~~ICPs) and~~ Systems as well as other bodies that may form to provide support or services to these and the healthcare sector. [7 paragraphs unchanged] 3. Produce longitudinal rare disease analysis and reports which enable patients to receive the correct treatment for a condition that had not yet been ~~diagnosed.~~ diagnosed, e.g. no testing available, no definitive diagnosis reached by the clinician. The data will be used to support the NHS either directly through [26 words unchanged] have been provided within the Expected Measurable Benefits section of this Agreement. ~~Wilmington Healthcare and Wilmington Shared Services Ltd are wholly owned subsidiaries of Wilmington Plc.~~ Access to the pseudonymised, record level data are only available for named, [13 words unchanged] all substantively employed by either Wilmington Healthcare or Wilmington Shared Services Ltd. ~~All staff working for Wilmington Shared Services Ltd have an honorary contract addendum to their employment contract, covering compliance and incident disclosure responsibilities for the data.~~ Commissioning Excellence, a directorate within Wilmington Healthcare, has official NHS England niche provider status for commissioning support. The Niche provider status was established by NHS England for the areas of commissioning support that providers would require in order to undertake effective commissioning. Individuals were invited to register based on their credibility in the commissioning support provider market and register with NHS England to demonstrate their competency in providing the range of services that make up commissioning support. The provider must be able to demonstrate their competence through on-going involvement in commissioning support and this is evidenced annually through contracts obtained, professional development in the specialist area and the outcomes of work undertaken. [5 paragraphs unchanged] ~~Full data are required, as~~ Wilmington Healthcare’s outputs are not limited to any particular age, region or any other subgroup or disease risk ~~factor,~~ factor. However, the HES and ECDS data has been restricted to only the relevant fields. NHS Digital has applied column level minimisation to the HES and ECDS extracts; i.e. not everything available has been requested by the applicant. For instance, in the HES APC datasets diagnosis and procedure codes are available in a variety of lengths (3-character, 4-character and the codes as provider by the submitter). Wilmington Healthcare has selected only to receive one variety of these. NHS Digital has worked closely with the applicant throughout previous iterations of the agreement to review and advise on efforts made to reduce the number of fields selected. Data shall be minimised on a project-by-project basis to ensure that only the appropriate fields are output. ~~Fields are~~ Wilmington Healthcare consider the number of years, geography, other data sources and fields required ~~in order~~ for each project to ~~provide accurate information and filter the appropriate scope of records to aggregate into outputs~~ minimise that contain only the relevant information. To assure this, all projects go through Wilmington Healthcare’s Advisory Board, containing lay members, who assess each new project against our NHS Digital DPIA and the DSA to ensure alignment and ensure no variations or new uses of the data. shared further. Data has been selected after careful review of the fields requested, and that only necessary data needed for purposes covered in this agreement are requested. Wilmington Healthcare review the data provided and warehoused against data that is used to understand if further minimisation can be performed, ensuring requested data is adequate, relevant, and limited to what is necessary in relation to the purposes for which they are processed (data minimisation). It is deemed fields requested are required in order to provide accurate information and filter the appropriate scope of records to aggregate into outputs that contain only the relevant information. To assure this, all projects go through Wilmington Healthcare’s Advisory Board, containing lay members, who assess each new project against our NHS Digital DPIA and the DSA to ensure alignment and ensure no variations or new uses of the data. Each advisory board application asks the submitter to consider if any other data, such as that in the public domain can be used to further minimise data sharing outside that required. This is further assured by assessing applications against Wilmington Healthcare's Data Protection Impact Assessment for each new project and assessing compliance against the data minimisation principle in line with UK GDPR. [4 paragraphs unchanged] Assess (a) pathway(s) and/or organisation(s) performance against similar comparisons and to understand where change could be required to achieve Quality, Innovation, Productivity and Prevention (QIPP) or ~~GIRFT~~ Getting It Right First Time (GIRFT) planning or implement NHS long term plans / strategies. Data isn’t used to specifically feed into the GIRFT programme. Instead, the [15 words unchanged] are specific GIRFT measures available in HES. For example, where there are ~~OPCS~~ Operating Procedure Codes Supplement (OPCS) codes mentioned in a GIRFT report, looking for those codes in the [18 words unchanged] organisation could focus their planning to better reach or implement GIRFT opportunities/strategies. [10 paragraphs unchanged] Quantis delivers real world healthcare insights, through interactive dashboards and reports, that help clients understand the ever-changing health and care landscape. With Quantis clients can access intelligent insight, at a national or localised level to: ~~• Identify where service efficiencies and patient outcomes can be improved~~ ~~• Increase the appropriate diagnosis, management and awareness of a disease~~ ~~• Map performance locally and nationally where specialist teams/resources are in place~~ ~~• Provide collaborative service solutions that address healthcare inequalities~~ [1 paragraph unchanged] ~~> The outputs are not to be used principally for commercial purpose~~ [19 paragraphs unchanged]

Processing activities

[10 paragraphs unchanged] • Comprehend how spells break into episodes at record level, where an episode is a component of spell or stay in hospital. A spell starts with an admission to hospital and ends with a discharge. Within this, patients have one or more periods of care each under a different consultant (or consulting team), called an episode. This will enable all comorbid conditions and procedures to be rolled into aggregated, non-identifiable, [23 words unchanged] cohort level, and to study the impact of disease management over time. [2 paragraphs unchanged] • Analyse patient outcomes such as comorbid disease, procedures and unnecessary hospital [9 words unchanged] level prior to aggregating into predefined cohorts for use by users in ~~the~~ Quantis (the Modeller ~~system.~~ dashboard system allowing users to visualised healthcare data at an organisational level). [15 paragraphs unchanged]

Expected output

[3 paragraphs unchanged] • Demonstrate the reduction of the ~~burden on~~ patients requiring more care in social care by implementing effectively designed clinical pathways and services using to prevent patients leaving healthcare and becoming a burden on social care without effective treatment [3 paragraphs unchanged] Quantis has a growing user base, ~~including NHS, non-NHS,~~ predominantly life sciences companies, but clients also include NHS and charity users, resulting in increasing numbers of users benefitting from the data insight and analysis provided from the system. [17 paragraphs unchanged] ~~Any outputs will be used by Wilmington’s clients, in the following elements of the commissioning, healthcare and service improvement cycle:~~ ~~Analysis Phase:~~ • Assess (a) pathway(s) and/or organisation(s) performance against similar comparisons and to understand where change could be required to achieve QIPP or GIRFT planning or implementation of NHS long term plans / strategies. ~~Planning Phase:~~ • Communicate with all NHS stakeholders in explaining the rationale for change and to create engagement with users to understand their needs in the commissioning, healthcare and service improvement process • Identify local health economies which are managing a specific disease effectively. To use this data to quantify what success will look like in terms of reduced inappropriate hospital activity and cost plus decreased comorbidity patient disease • Apply predictive modelling where appropriate to understand the potential impact for patients plus the health and social care system by adopting a clinical pathway or service design which is optimal. ~~Implementation Phase:~~ ~~• Enable continual monitoring, communication and education with all NHS stakeholders as to the rationale and requirements for a new clinical pathway or service.~~ ~~Review Phase:~~ ~~• Review progress on a frequent basis and to make any necessary, close to real-time, changes to the pathway or service to optimise efficiency.~~ • Access to Wilmington Healthcare solutions that contain HES, MHSDS or DIDs data will be underpinned by additional terms and conditions that ensure the data are used for the appropriate purposes, including: [1 paragraph unchanged] Quantis portal system is an electronic online commissioning, healthcare and service improvement [18 words unchanged] (HES or DIDS) or sensitive (MHSDS), non-identifiable data as the outputs. The portal contains visualisations of data, to help translate data into a digestible format. This is particularly desired by those interacting with the data whose primary role is not data focused. The system contains data that is minimised using the recommended guidelines and filters the data into visualisations that are easy to understand. The Quantis portal outputs are used by registered, authenticated users who have access under specific terms and conditions, over a sustained period, typically of one to two years. Recipients of the portal system are predominantly pharmaceutical companies (~75%) who use this with their healthcare provider customers, but also include charities and the NHS directly. [1 paragraph unchanged] For Quantis augmented analytics, the system dynamically presents aggregated, small number suppressed; [16 words unchanged] who have undergone and passed protocol training prior to access being granted. Outputting the data into tabulations and visualisations, minimised using the recommended guidelines. The system is held entirely on the listed servers and accessed only [62 words unchanged] these servers and will not process any data for the purposes above. Other Quantis dashboards may be hosted on ~~microsites~~ microsites, a small website, where the visualisation may be publicly accessible, such as for a charity website – where the purpose is to gain awareness for healthcare related challenges [89 words unchanged] these servers and will not process any data for the purposes above. [1 paragraph unchanged] • Comprehend how spells break into episodes at record level, where an episode is a component of spell, or stay in hospital. A spell starts with an admission to hospital and ends with a discharge. Within this, patients have one or more periods of care each under a different consultant (or consulting team), called an episode. To enable all comorbid conditions and procedures to be rolled into aggregated, non-identifiable, [23 words unchanged] cohort level, and to study the impact of disease management over time. [7 paragraphs unchanged] Each user organisation agrees a ~~legal~~ contract with Wilmington Healthcare stipulating Terms and Conditions (T&Cs) as specified within the Objective for Processing (5a) section. This contract provides additional safeguards clearly explaining data privacy, and acceptable use of the system and the data it contains. The agreement contains but is not limited to: [4 paragraphs unchanged] Wilmington Healthcare Customer Service team are responsible for ~~tracking,~~ user management, with the organisation’s commitment, all existing leavers and removing from the Quantis system. [6 paragraphs unchanged] •CVD HEART VALVE DISEASE: In partnership with the charity Heart Valve Voice [12 words unchanged] ‘Malcolm’s story’ using the Right Care methodology and a Delphi consensus process (a well-established approach to research, identifying a consensus view across subject experts which encourages reflection among participants, who share opinions and reconsider their opinion based on the anonymised opinions of others, ultimately resulting in a one consensus view) to show depict the difference between treating someone with aortic stenosis and [37 words unchanged] the Kings Fund and the British Cardiovascular Society Annual Conference in Manchester. [8 paragraphs unchanged] • DIABETES HEALTH ECONOMY TOOL: A client and Wilmington developed a diabetes [17 words unchanged] how related diabetic co-morbidities such as hypoglycaemia can affect hospital admissions. The dashboards are supported by other data sources such as the National Diabetes Audit (NDA) to minimise the HES data used and give a primary/secondary care view for the business case. The outputs from these dashboards were used to support the case for a [9 words unchanged] successful in receiving funding and recruiting into a substantive band 7 post. [1 paragraph unchanged]

Expected measurable benefits

[29 paragraphs unchanged] Wilmington Healthcare’s legitimate interest of positively impacting healthcare has been fulfilled through the successful management and completion of various projects within the healthcare sector and advising organisations how they can best improve their services.

Benefits reported

[2 paragraphs unchanged] ~~The disease insight report into the burden of hospitalisation in MS~~ This lead to the development of a new educational initiative for neurologists so [34 words unchanged] and 12 CCGs. This will fast track patients who have UTI symptoms. [1 paragraph unchanged] In South Tees the Parkinson's team has been using data to help [43 words unchanged] to deal with complex issues. And then they can identify areas for ~~improvements EXPECTED~~ improvements. [6 paragraphs unchanged] The data highlighted that many of the costs related to people with [51 words unchanged] change led to the prioritisation of depression locally and the subsequent development and implementation of an Integrated Depression ~~Pathway. Implementation of the pathway~~ Pathway which has led to an increase in the number of patients accessing social prescribing and receiving treatment in line with NICE recommendations. [1 paragraph unchanged] This report has been used in over 40 different areas of the [22 words unchanged] been a reduction in the number of bladder related emergency admissions since ~~2016/17.~~ 2016/17, for instance Urinary Tract Infections (UTIs) have decreased from around 7,500 to 5,500 MS related non-elective UTI spells per year over this time period. [1 paragraph unchanged] Data analysis carried out to support the creation of an optimal care [29 words unchanged] costs, which could then be reallocated to other areas of the NHS. Cost savings can be reallocated to the specific department where savings are made, which may fund workforce or additional equipment such as specialise equipment or beds, depending on the requirements of the organisation making the saving. [3 paragraphs unchanged] The data presented within this Dashboard caused concern, and ultimately lead to an audit of care which highlighted the number of people who had been diagnosed with a ~~wound.~~ wound infection. Subsequent to this a series of training and education events took place [30 words unchanged] steps to ensure any future issues were highlighted and could be addressed. [2 paragraphs unchanged] This work revealed that the main reason for emergency admission in MS [31 words unchanged] scanner. Since this time there has been a reduction in UTI emergency ~~admission,~~ admissions, by around 2000 spells a year, saving patients and their families the distress of a hospital stay. [1 paragraph unchanged] Data ~~from the tabulations provided~~ highlighted the inequalities in care of patients with NTM-LD, and the data [42 words unchanged] outputs led to the development of a specialized service design and implementation. [2 paragraphs unchanged] Data from the dashboard has demonstrated the current care pathway for surgical [23 words unchanged] target proposed for pre-assessment, screening and treatment of anaemia in advance of ~~surgery.~~ surgery, resulting in freeing up FTE time and beds that can be reallocated to some of the NHS Long Term Plan priorities [3 paragraphs unchanged] An NHS client of Wilmington Healthcare developed a data tool to support with work they are doing with a Cardiac Provider Collaborative in South London. This work involves a network of clinicians who sit on a clinical council and includes 5 Trusts from the region. An NHS client of Wilmington Healthcare developed a data tool to support with work they are doing with a Cardiac Provider Collaborative in South London. The tool enabled and supported the clinical council to understand, quantify and then drive down unwarranted variation and create savings. The outcome of the clinical council is projected to be £1.3 million of savings per year which can be utilised for bettering outcomes of patients in the system. Feedback from a member of the clinical council includes "HES data was one of the fundamental data sets for the cardiac clinical council, and ultimately on what its successful outcome was based". These savings can be reinvested in optimal care pathways for patients at the provider organisations, the money saved being more efficiently used by the trusts for both workforce investment and specialist equipment provision. Savings where there is deficit already existing will also be absorbed to continue the provision of services to existing patients. These trusts were previously working individually, using individual trust data and GIRFT regions within the tool the area was able to take a collaborative view on a collective approach. Emphasis was placed on clinical data and the criteria supplied for making strategic decisions. The tool enabled and supported the clinical council to understand, quantify and then drive down unwarranted variation and create savings. The outcome of the clinical council is projected to be £1.3 million of savings per year which can be utilised for bettering outcomes of patients in the system. Feedback from a member of the clinical council includes "HES data was one of the fundamental data sets for the cardiac clinical council, and ultimately on what its successful outcome was based". [2 paragraphs unchanged]

Objective for processing

Wilmington Healthcare works across the healthcare community, including local and national NHS organisations and the private, pharma and third sectors.

The data requested is necessary for the purposes of the legitimate interests pursued by the controller, except where such interests are overridden by the interests or fundamental rights and freedoms of the data subject which require protection of personal data, in particular where the data subject is a child covered by Article 6 (1)(f) of GDPR). Wilmington Healthcare Ltd is a commercial company and charges for its services (on a profit making basis) to specifically provide services to benefit NHS health and social care. The data to which access is requested are proportionate and necessary and Wilmington Healthcare have completed a legitimate interest’s assessment (LIA) and are satisfied that the interests of the data subjects do not override their legitimate interests; that they would reasonably expect the processing and it would not cause unjustified harm. The data subjects’ interests and fundamental rights are protected through appropriate minimisation of fields and patient records being processed; pseudonymisation to minimise any risk of identifying individuals; protection of the data in a secure environment, and guaranteeing secure destruction at any stage at the request of NHS Digital or after a defined period on completion of the project.

The processing of the data is essential - without it, Wilmington would not be able to positively impact healthcare to the same extent, with case studies highlighted in the recent NHS Digital Clinical Review: The Impact of data release through the Data Access Request Service. The data will be used to support the NHS either directly through the delivery of tools / tables and reports or indirectly through non-NHS organisations, where solutions are provided with the NHS as the end beneficiary. Examples of this are provided in the benefits section below.

The Legal basis for processing of personal data relating to patient health is under Article 9(2)(j)of the GDPR - Processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject. The data subjects’ interests and fundamental rights are protected through appropriate minimisation of fields; protection of the data in a secure environment and guaranteeing secure destruction at any stage at the request of NHS Digital or after a defined period on completion of the project.

Wilmington Healthcare look to undertake projects that incorporate the Hospital Episode Statistics (HES), Emergency Care Data Set (ECDS), Mental Health Services Data Set (MHSDS) or Diagnostic Imaging Dataset (DIDs) data with customers in the Life Sciences (pharmaceutical, medical device, bioscience), charity / not for profit / patient organisations, NHS organisations and academia. A workplan is supplied to NHS Digital that contains the project, details of the data included, minimisation applied to the data for that project along with the name of the customer and industry that they are classified within.

Wilmington Healthcare and Wilmington Shared Services Ltd are wholly owned subsidiaries of Wilmington Plc. Although Wilmington Plc is the parent company, Wilmington Plc do not have any influence on the means of purpose for data processing, nor do their employees process the data. Wilmington Plc are not acting under any capacity as a either a Data Processor or Data Controller. Wilmington Healthcare are the data controller, they determine the way the data is processed, the purposes, and administer the advisory board who review each project. Wilmington Healthcare control all products produced with the data and have the product revenue and costs going through it. Wilmington Shared Services Ltd substantively employ the central services team but do not control any products. Access to the pseudonymised, record level data are only available for named, trained members of Wilmington Healthcare or Wilmington Shared Services Ltd staff, who are all substantively employed by either Wilmington Healthcare or Wilmington Shared Services Ltd.

The data processing Wilmington Shared Services Ltd carry out are described in the Operational Level Agreement, and include activities such as:

• Access control and user management to relevant data assets

• Management of HES/licenced data in line with requirements of licence agreement for Wilmington Healthcare

1. Raise disease awareness, management and diagnosis through analysing data and publishing reports and tabulations which are available in the public domain.

Wilmington Healthcare and its Commissioning Excellence directorate have provided aggregated HES data outputs for use in report production and commissioning support. Wilmington Healthcare has used (and wishes to continue to use) record level pseudonymised:

> Non-sensitive emergency care data since 2019, using data from 2017/18 till current latest available releases.

> Non-sensitive HES data since 2008, using data from 2006/07 till current latest available releases.

> Non-sensitive DIDs data since 2013, using data from 2011/12 till current latest available releases.

> Sensitive Mental Health data and since 2013, using data from 2011/12 till current latest available releases.

Wilmington Healthcare’s outputs are not limited to any particular age, region or any other subgroup or disease risk factor. However, the HES and ECDS data has been restricted to only the relevant fields. NHS Digital has applied column level minimisation to the HES and ECDS extracts; i.e. not everything available has been requested by the applicant. For instance, in the HES APC datasets diagnosis and procedure codes are available in a variety of lengths (3-character, 4-character and the codes as provider by the submitter). Wilmington Healthcare has selected only to receive one variety of these. NHS Digital has worked closely with the applicant throughout previous iterations of the agreement to review and advise on efforts made to reduce the number of fields selected. Data shall be minimised on a project-by-project basis to ensure that only the appropriate fields are output. Wilmington Healthcare consider the number of years, geography, other data sources and fields required for each project to minimise that shared further.

Data has been selected after careful review of the fields requested, and that only necessary data needed for purposes covered in this agreement are requested. Wilmington Healthcare review the data provided and warehoused against data that is used to understand if further minimisation can be performed, ensuring requested data is adequate, relevant, and limited to what is necessary in relation to the purposes for which they are processed (data minimisation). It is deemed fields requested are required in order to provide accurate information and filter the appropriate scope of records to aggregate into outputs that contain only the relevant information. To assure this, all projects go through Wilmington Healthcare’s Advisory Board, containing lay members, who assess each new project against our NHS Digital DPIA and the DSA to ensure alignment and ensure no variations or new uses of the data. Each advisory board application asks the submitter to consider if any other data, such as that in the public domain can be used to further minimise data sharing outside that required. This is further assured by assessing applications against Wilmington Healthcare's Data Protection Impact Assessment for each new project and assessing compliance against the data minimisation principle in line with UK GDPR.

For points 1 and 2 above, Wilmington Healthcare outputs will only contain the most recent 5 full years of data (plus the most recent provisional data). At the point the most recent provisional data becomes finalised, the oldest year of data will be removed from the outputs.

For point 3 above, 10 years of data are required as Wilmington Healthcare undertakes projects for rare disease studies, where a specific diagnosis for that condition is not available. This requires detailed analysis of patient diagnoses over the period of 10 years in order to develop patterns of diagnoses / procedures for patients and create a cohort of patients most likely to have a rare condition in order for them to be tested and treated appropriately. Wilmington Health require this 10-year period of data as these conditions impact less than 5 in 10,000 patients, therefore, this length of time is necessary to develop a robust cohort of patients for analysis. Under this Agreement, only aggregated outputs with small numbers suppressed will be produced in line with HES Analysis Guidance. Anything other than this will require a separate application and agreement with NHS Digital.

Data is used in:

> Analysis Phase:

Data isn’t used to specifically feed into the GIRFT programme. Instead, the data is used to look at and assess the variation in organisations' activity where there are specific GIRFT measures available in HES. For example, where there are Operating Procedure Codes Supplement (OPCS) codes mentioned in a GIRFT report, looking for those codes in the data and comparing this with activity levels and best practice to understand areas of variance, and where an organisation could focus their planning to better reach or implement GIRFT opportunities/strategies.

> Planning Phase:

Apply predictive modelling where appropriate to understand the potential impact for patients plus the health and social care system by adopting a clinical pathway or service design which is optimal.

> Implementation Phase:

Enable continual monitoring, communication and education with all NHS stakeholders as to the rationale and requirements for a new clinical pathway or service.

> Review Phase:

Review progress on a frequent basis and to make any necessary, close to real-time, changes to the pathway or service to optimise efficiency.

Wilmington Healthcare undertake numerous projects utilising NHS Digital data on a yearly or one-off bases. Insights including HES data contain Quantis outputs.

Access to Wilmington Healthcare Quantis solutions that contain HES, ECDS, MHSDS or DIDs data will be underpinned by additional terms and conditions that ensure the data are used for the appropriate purposes, including:

> Where appropriate, an official NHS/industry joint working contract to be put in place.

> The same aggregated HES, ECDS, Mental Health data or DIDs data outputs to be made available, if requested, to all health and social care organisations, irrespective of their value to the company

The Quantis system is only to be provided to a restricted number of named users, who have undergone and passed protocol training within one month of access being granted.

All named users to authenticate sign on through unique password protection.

Life Science Companies to abide by the established Prescription Medicines Code of Practice Authority (PMCPA) Code of Practice and DH governance on the use of healthcare data.

The ability to provide feedback in relative real time on the success of a new pathway or new service, is critical to the realisation of the redesign project. This means a monthly breakdown and routine data refresh at record level will be required. Monthly data is vital to show changes at an organisational level such as ICSs what is happening in their organisation and how that is changing, in as close to real time as available. Understanding and elucidating actionable insights on challenges they meet, or impacts of service change they make, based off data, makes a stronger case for service improvement. Monthly trends are important in all stages of change – analysis, planning, implementation and review. Working with out-of-date data, may mean decisions are taken without knowing the most recent situation available. An example of this would be during the covid period, and through recovery, where organisations have had to rapidly reconfigure their services and some are just “keeping their head above water”, being able to identify blockers and bottle necks to services in this upheaval period can only be seen with the most recently available data, as it comes through, and alerts to future impacts can be assessed.

Wilmington Healthcare has complete editorial control meaning that the outputs are developed completely independently of the commissioner of the work and there is no bias in terms of the findings.

For the avoidance of doubt, the outputs produced by Wilmington that incorporate the HES, Mental Health data and DIDs data supplied under this license by NHS Digital will not:

• Relate HES, Mental Health data or DIDs data outputs to the use of commercially available products, an example being the prescribing of individual pharmaceutical products

• Include any analysis on the impact of commercially available products an example being individual pharmaceutical product

For data from the Mental Health (MHSDS, MHLDDS, MHMDS) data sets, and any Mental Health data linked to HES or SUS, the following disclosure control rules will be applied:

National-level figures only may be presented unrounded, with small number suppression;

- Suppress all numbers between 1 and 7

- Round all other numbers to the nearest 5

Percentages can be calculated based on unrounded values, but need to be rounded to the nearest integer in any outputs.

In addition for Learning Disability data in Mental Health (MHSDS, MHLDDS, MHMDS), the England-level data also must apply the suppression of all numbers between 0 and 5, and rounding of other numbers to the nearest 5.

Wilmington Healthcare requires data from NHS Digital for the purposes of these legitimate interests. Processing personal data is necessary for Wilmington Healthcare’s legitimate interests which are described in this application. The data to which access is requested are proportionate and necessary to achieve those interests. Wilmington Healthcare have completed a legitimate interest’s assessment (LIA) and are satisfied that the interests of the data subjects do not override their legitimate interests; that they would reasonably expect the processing and it would not cause unjustified harm. The data subjects interests and fundamental rights are protected through appropriate minimisation of fields and patient records being processed; pseudonymisation to minimise any risk of identifying individuals; protection of the data in a secure environment, and guaranteeing secure destruction at any stage at the request of NHS Digital or after a defined period on completion of the project.

Expected output

All outputs produced by Wilmington Healthcare will be aggregated with small numbers supressed in line with HES analysis guidance and aim to:

• Outline the benefits for the appropriate movement of patient treatment from inpatient to outpatient or primary care

• Provide detailed, evidence based recommendations for how to improve care in specific organisations or therapy areas

• Allow clinicians and commissioners to interpret the data and take appropriate actions to safeguard against excess mortality, reduce mortality rates and improve the quality of care where possible

Wilmington Healthcare undertake numerous projects utilising NHS Digital data on a yearly or one-off bases. These outputs include:

Reports:

Disease Insight Reports

Costed Integrated Pathways

Infographics

Presentations

Submissions to peer review journals

Tabulations:

Excel based outputs

Tableau based outputs

Dashboards:

Quantis portal system

Online dashboards

Offline dashboards (MS Excel, Tableau or other BI software)

Maps

Augmented analytics

Quantis system:

Quantis portal system is an electronic online commissioning, healthcare and service improvement support solution generating outputs that are aggregated, small number suppressed in line with the HES Analysis Guide, non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable data as the outputs. The portal contains visualisations of data, to help translate data into a digestible format. This is particularly desired by those interacting with the data whose primary role is not data focused. The system contains data that is minimised using the recommended guidelines and filters the data into visualisations that are easy to understand. The Quantis portal outputs are used by registered, authenticated users who have access under specific terms and conditions, over a sustained period, typically of one to two years. Recipients of the portal system are predominantly pharmaceutical companies (~75%) who use this with their healthcare provider customers, but also include charities and the NHS directly.

For Quantis augmented analytics, the system dynamically presents aggregated, small number suppressed; non-identifiable outputs in line with the HES analysis guide to a restricted number of named users, who have undergone and passed protocol training prior to access being granted. Outputting the data into tabulations and visualisations, minimised using the recommended guidelines. The system is held entirely on the listed servers and accessed only through the secure sign-on web link. No record level data is held on any customer’s local machine at any time, all pseudonymised record level data is stored in the storage locations specified within this agreement, in England. All tools present only data aggregated and non-identifiable in line with the HES analysis guide. The hosting organisation have no access to the data on these servers and will not process any data for the purposes above.

For most outputs listed, Wilmington Healthcare require 5 years of pseudonymised, non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable record level data to be able to:

For the Quantis portal system, access works as follows:

The outputs to be used exclusively for the purpose of provision of outputs to assist health and social care organisations.

The outputs are not to be used principally for commercial purpose

The same aggregated HES, Mental Health data or DIDs data outputs to be made available, if requested, to all health and social care organisations, irrespective of their value to the company

Wilmington Healthcare Customer Service team are responsible for user management, with the organisation’s commitment, all existing leavers and removing from the Quantis system.

Examples of outputs produced using NHSD data by Wilmington Healthcare, with case studies published online:

• IMPACT OF DEPRESSION TOOL: Lundbeck Ltd commissioned Wilmington Healthcare to produce an Impact of Depression tool to better understand the use of mental health services across the UK. This tool is now in use and has provided valuable insights into the use of mental health services across the UK.

• HEART VALVE DISEASE: Wilmington healthcare have developed business intelligence to highlight the number of people with aortic stenosis, and their current usage of hospital services.

• DATA DASHBOARD- HARTMANN & GP FEDERATION PARTNERSHIP: HARTMANN were approached by the Lead for a large GP Federation, who was interested in working to improve the overall service given to their wound care patients. HARTMANN used the dashboard, that was developed by Wilmington Healthcare, to highlight how many of their patients were accessing unplanned care services for two main areas, Lower Limb Ulcer and Cellulitis

• MS EMERGENCY ADMISSIONS: A client used the Quantis solution to show MS Nurses the main reasons for emergency admissions in patients with MS.

• IDA AND HYPERKALAEMIA DASHBOARD: a resource that compiles a range of NHS Digital activity data for patients with IDA and Hyperkalaemia, with and without concurrent comorbidities, allowing the activity and resource impact associated with each condition to be better understood. The data has been shared in easy to use dashboards – which present data from a range of perspectives – key for understanding and changing service to better meet patient need; comparing elective v non-elective stays, cost, LOS, readmission rates etc. for patients with and without the condition, undergoing surgery and with a range of long term conditions.

Benefits reported

The work carried out by Wilmington Healthcare has benefited the provision of health and social care in England, some of the most recent yielded benefits are illustrated here:

DISEASE INSIGHT REPORT: MEASURING THE BURDEN OF HOSPITALISATION IN MS (2017):

This lead to the development of a new educational initiative for neurologists so that they can benchmark their MS services and understand how improvements can be made. UCL Partners in London who have developed an integrated urinary tract infection pathway for people with MS between the hospital and 12 CCGs. This will fast track patients who have UTI symptoms.

DATA DRIVEN DASHBOARD, PARKINSONS UK:

In South Tees the Parkinson's team has been using data to help make the case for on-going service investment and development. The team realised that they were failing to meet the needs of patients with complications such as motor fluctuations, dementia and psychosis and realised that 15-minute review appointments, every six months, was no way to deal with complex issues. And then they can identify areas for improvements.

With the help of a Health Foundation “Innovating for Improvement" grant, they set up a rapid-access, community-based unit, staffed by a mix of medical, nursing, therapist and mental health services. the plan was to fast-track struggling patients to the "Parkinson's Advanced Symptoms Unit" (PASU), following them up at home as required, to see if they could resolve crisis issues that might otherwise result in hospital admission.

Hospital admissions were benchmarked on admissions and length of stay and included nursing home patients. Prescribing costs were also calculated. Armed with this baseline data the unit has been able to demonstrate significant cost savings to the local CCGs and, as such, are delighted to have a fully commissioned PASU service up and running for the foreseeable future.

It is now significantly more cost-effective than many other matched CCG regions, and are optimistic that the PASU will continue to deliver excellent outcomes, both for commissioners and, more importantly, patients and carers.

IMPACT OF DEPRESSION TOOL- LUNDBECK LTD:

Depression has a significant cost and resource burden to the NHS and wider health and care system, with a great deal of variation between different areas. The majority of these costs fall outside mental health trusts and are associated with acute trusts not covered by block contract, and in many areas there is a high proportion of patients with depression in contact with specialist mental health services who sit within lower care clusters and could potentially be more appropriately managed in primary care services. This has helped increase the focus and priority placed on improving depression management at a local NHS level.

This tool was later to support the mental health lead for the GP federation in Northampton, and stakeholders from the local Mental Health Trust, make a case for change for the improved management and prioritisation of depression. Data from the IoDR demonstrated that many of the costs associated with depression were related to secondary care activity, with the majority due to acute trust activity, rather than specialist mental health services.

The data highlighted that many of the costs related to people with long term conditions who also had comorbid depression, and a subsequent analysis by the Commissioning Support Unit demonstrated that patients with depression and a long-term condition such as COPD were being admitted more frequently in Northampton and had higher healthcare costs than patients with a long-term condition alone. The case for change led to the prioritisation of depression locally and the subsequent development and implementation of an Integrated Depression Pathway which has led to an increase in the number of patients accessing social prescribing and receiving treatment in line with NICE recommendations.

SECONDARY PROGRESSIVE MULTIPLE SCLEROSIS (SPMS) REPORT:

This report has been used in over 40 different areas of the UK to enable discussion on how services need to address preventative care strategies. Over the time of collecting this data there has been a reduction in the number of bladder related emergency admissions since 2016/17, for instance Urinary Tract Infections (UTIs) have decreased from around 7,500 to 5,500 MS related non-elective UTI spells per year over this time period.

CVD HEART VALVE DISEASE:

Data analysis carried out to support the creation of an optimal care pathway showed that patients who received intervention from a catheter inserted heart valve benefitted from improved quality of life, whilst the NHS saved the NHS £20,000 per patient in costs, which could then be reallocated to other areas of the NHS. Cost savings can be reallocated to the specific department where savings are made, which may fund workforce or additional equipment such as specialise equipment or beds, depending on the requirements of the organisation making the saving.

HEART VALVE DISEASE:

This intelligence provided by Wilmington illustrated the number of patients undergoing TAVI procedures for aortic stenosis (this is the least invasive and least costly overall treatment for AS). This enabled clinicians and commissioners to understand where they need to focus most attention on preventative strategies to identify and treat people with AS. This is one of the priorities for CVD in the NHS Long term Plan.

DATA DASHBOARD- HARTMANN & GP FEDERATION PARTNERSHIP:

The data presented within this Dashboard caused concern, and ultimately lead to an audit of care which highlighted the number of people who had been diagnosed with a wound infection. Subsequent to this a series of training and education events took place over three months, and the data was again used to highlight which areas should be prioritised. The data was also used with the administration staff so that they could take steps to ensure any future issues were highlighted and could be addressed.

In addition, a series of Health Promotion initiatives were introduced, such as patient leaflets, posters and drop-in clinics that patients could access within the surgeries. Move forward 12 months from the comprehensive training programme that was initiated to the next annual data set. The data showed a marked drop in the number of wound care patients accessing unplanned care services. Overall, within the Federation numbers are down by 30%, with some practices achieving much higher numbers.

MS EMERGENCY ADMISSIONS:

NTM LUNG DISEASE:

Data highlighted the inequalities in care of patients with NTM-LD, and the data helped to establish how and where patients were being referred to in order to gain specialist treatment. It also demonstrated that whilst some patients are referred to specialist centres many are not, and this leads to inequality of access and care. The outputs led to the development of a specialized service design and implementation.

Once approved it is hoped that the specialized service will lead to better efficiencies within the NHS and also give the outcome of equity of access and care to a high-risk group of respiratory patients.

IDA AND HYPERKALAEMIA DASBOARD:

Data from the dashboard has demonstrated the current care pathway for surgical patients undergoing high blood loss surgery and has helped a number of trusts begin to better address service change to meet the CQUIN target proposed for pre-assessment, screening and treatment of anaemia in advance of surgery, resulting in freeing up FTE time and beds that can be reallocated to some of the NHS Long Term Plan priorities

DIABETES HEALTH ECONOMY TOOL:

CARDIAC DEVICES GIRFT REGION TOOL:

NIEMANN-PICK (NPC) ALGORITHM:

It is expected that less NPC patients will go undiagnosed for many years and will receive appropriate treatment more promptly. Proper treatment will make it less likely that the patient’s education and/or employment will be affected dependent on the severity of the illness. Accurate and prompt diagnosis will lessen unnecessary burden on the NHS.

DARS-NIC-16016-Y9H1D-v11.6 29 June 2022 to 29 August 2022

Title: Hospital Episode Statistics (HES), ECDS, Diagnostic Imaging Dataset (DIDs) and sensitive Mental Health data to assist disease awareness, commissioning, and help to produce longitudinal rare disease analysis and reports
Commercial: Yes
Sublicensing: No
Datasets: 11
Files released: 8

What changed from DARS-NIC-16016-Y9H1D-v10.9

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

Fields changed from DARS-NIC-16016-Y9H1D-v10.9
Field	Was	Became
Title	~~Amendment and Renewal to DARS-NIC-16016-Y9H1D-v1.7~~	Hospital Episode Statistics (HES), ECDS, Diagnostic Imaging Dataset (DIDs) and sensitive Mental Health data to assist disease awareness, commissioning, and help to produce longitudinal rare disease analysis and reports
Start date	~~2021-05-10~~	2022-06-29
End date	~~2022-05-09~~	2022-08-29

Datasets: ~~− Bridge file: Hospital Episode Statistics to Mental Health Minimum Data Set~~; ~~− HES-ID to MPS-ID HES Accident and Emergency~~

Objective for processing

[1 paragraph unchanged] The data requested is necessary for the purposes of the legitimate interests pursued by the ~~controller or by a third party,~~ controller, except where such interests are overridden by the interests or fundamental rights [16 words unchanged] data subject is a child covered by Article 6 (1)(f) of GDPR). Wilmington Healthcare Ltd is a commercial company and charges for its services (on a profit making basis) to specifically provide services to benefit NHS health and social care. The processing of the data is essential - without it it, Wilmington would not be able to positively impact healthcare to the same [57 words unchanged] end beneficiary. Examples of this are provided in the benefits section below. [1 paragraph unchanged] Wilmington Healthcare look to undertake projects that incorporate the ~~HES, ECDS, MHSDS~~ Hospital Episode Statistics (HES), Emergency Care Data Set (ECDS), Mental Health Services Data Set (MHSDS) or ~~DIDs~~ Diagnostic Imaging Dataset (DIDs) data with customers in the Life Sciences (pharmaceutical, medical device, bioscience), charity [37 words unchanged] the name of the customer and industry that they are classified within. Wilmington Healthcare only provide the use of the outputs to these organisations to work with ~~either~~ health organisations such as GPs, GP surgeries, Commissioners, Trusts (Acute and Mental Health), Area & Regional Teams, Vanguards, ~~STPs,~~ ICSs, Strategic Clinical Networks, Primary Care Networks (PCNs), Government & Government aligned groups, DH, NHS England, NICE and Academic Health [22 words unchanged] in providing services on behalf of the NHS, Charity and not-for-profit organisations. Wilmington Healthcare will also be working in support of the delivery of [9 words unchanged] to work with customers and the new NHS bodies as they form ~~that, as~~ that yet remain unnamed. For example, ~~Primary Care Networks (PCNs),~~ Integrated Care ~~Systems and~~ Providers (ICS and ICPs) and other bodies that form to provide support or services to the healthcare sector. Wilmington Healthcare and Wilmington Shared Services Ltd are wholly owned subsidiaries of Wilmington Plc. Although Wilmington Plc is the parent company, Wilmington Plc do not have any influence on the means of purpose for data processing, nor do their employees process the data. Wilmington Plc are not acting under any capacity as a either a Data Processor or Data Controller. Wilmington Healthcare are the data controller, they determine the way the data is processed, the purposes, and administer the advisory board who review each project. Wilmington Healthcare control all products produced with the data and have the product revenue and costs going through it. Wilmington Shared Services Ltd substantively employ the central services team but do not control any products. Access to the pseudonymised, record level data are only available for named, trained members of Wilmington Healthcare or Wilmington Shared Services Ltd staff, who are all substantively employed by either Wilmington Healthcare or Wilmington Shared Services Ltd. The data processing Wilmington Shared Services Ltd carry out are described in the Operational Level Agreement, and include activities such as: • Access control and user management to relevant data assets • Management of HES/licenced data in line with requirements of licence agreement for Wilmington Healthcare [2 paragraphs unchanged] 2. Support the commissioning, healthcare and service improvement cycle and enhance patient outcomes through understanding disease progression and applying to the continual improvement of service ~~development~~ development. [1 paragraph unchanged] The data will be used to support the NHS either directly through [26 words unchanged] have been provided within the Expected Measurable Benefits section of this Agreement. Wilmington Healthcare and Wilmington Shared Services Ltd are wholly owned subsidiaries of Wilmington Plc. Access to the pseudonymised, record level data are only available for named, trained members of Wilmington Healthcare or Wilmington Shared Services Ltd staff, who are all substantively employed by either Wilmington Healthcare or Wilmington Shared Services Ltd. All staff working for Wilmington Shared Services Ltd have an honorary contract addendum to their employment contract, covering compliance and incident disclosure responsibilities for the data. [2 paragraphs unchanged] > Non-sensitive ~~ECDS~~ emergency care data since 2019, using data from 2017/18 till current latest available releases. > Non-sensitive HES data since 2008, using data from 2006/07 till current latest available releases. > Non-sensitive DIDs data since 2013, using data from 2011/12 till current latest available releases. > Sensitive Mental Health data and since 2013, using data from 2011/12 till current latest available releases. Full data are required, as Wilmington Healthcare’s outputs are not limited to [13 words unchanged] HES and ECDS data has been restricted to only the relevant fields. Data shall be minimised on a project-by-project basis to ensure that only the appropriate fields are output. Fields are required in order to provide accurate information and filter the appropriate scope of records to aggregate into outputs that contain only the relevant information. To assure this, all projects go through Wilmington Healthcare’s Advisory Board, containing lay members, who assess each new project against our NHS Digital DPIA and the DSA to ensure alignment and ensure no variations or new uses of the data. [1 paragraph unchanged] For point 3 above, 10 years of data are required as Wilmington [88 words unchanged] necessary to develop a robust cohort of patients for analysis. Under this ~~application,~~ Agreement, only aggregated outputs with small numbers suppressed will be produced in line [6 words unchanged] than this will require a separate application and agreement with NHS Digital. ~~Analysis Phase:~~ Data is used in: ~~Assess (a) pathway(s) and/or organisation(s) performance against similar comparisons and to understand where change could be required to achieve QIPP planning or NHS long term plans / strategies~~ > Analysis Phase: ~~Planning Phase:~~ Assess (a) pathway(s) and/or organisation(s) performance against similar comparisons and to understand where change could be required to achieve Quality, Innovation, Productivity and Prevention (QIPP) or GIRFT planning or implement NHS long term plans / strategies. Communicate with all NHS stakeholders in explaining the rationale for change and to create engagement with users to understand their needs in the commissioning, healthcare and service improvement process Data isn’t used to specifically feed into the GIRFT programme. Instead, the data is used to look at and assess the variation in organisations' activity where there are specific GIRFT measures available in HES. For example, where there are OPCS codes mentioned in a GIRFT report, looking for those codes in the data and comparing this with activity levels and best practice to understand areas of variance, and where an organisation could focus their planning to better reach or implement GIRFT opportunities/strategies. Identify local health economies which are managing a specific disease effectively. To use this data to quantify what success will look like in terms of reduced inappropriate hospital activity & cost plus decreased comorbidity patient disease Wilmington Health do not specifically look at anything directly with GIRFT, however have mapped data from trust to GIRFT regions to understand where there may be variation to benchmarks and opportunities for comparison with trusts in these areas. Wilmington Health have also looked at measures available in HES that are also talked about under GIRFT programmes, (e.g. procedures) again not specifically with GIRFT. > Planning Phase: Communicate with all NHS stakeholders in explaining the rationale for change and to create engagement with users to understand their needs in the commissioning, healthcare and service improvement process. Identify local health economies which are managing a specific disease effectively. To use this data to quantify what success will look like in terms of reduced inappropriate hospital activity and cost plus decreased comorbidity patient disease [1 paragraph unchanged] > Implementation Phase: [1 paragraph unchanged] > Review Phase: [1 paragraph unchanged] Access to Wilmington Healthcare solutions that contain HES, ECDS, MHSDS or DIDs data will be underpinned by additional terms and conditions that ensure the data are used for the appropriate purposes, including: Wilmington Healthcare undertake numerous projects utilising NHS Digital data on a yearly or one-off bases. Insights including HES data contain Quantis outputs. ~~The outputs are not to be used principally for commercial purpose~~ Quantis delivers real world healthcare insights, through interactive dashboards and reports, that help clients understand the ever-changing health and care landscape. With Quantis clients can access intelligent insight, at a national or localised level to: ~~Where appropriate, an official NHS/industry joint working contract to be put in place.~~ • Identify where service efficiencies and patient outcomes can be improved ~~The same aggregated HES, ECDS, Mental Health data or DIDs data outputs to be made available, if requested, to all health and social care organisations, irrespective of their value to the company~~ • Increase the appropriate diagnosis, management and awareness of a disease ~~The system only to be provided to a restricted number of named users, who have undergone and passed protocol training within one month of access being granted.~~ • Map performance locally and nationally where specialist teams/resources are in place • Provide collaborative service solutions that address healthcare inequalities Access to Wilmington Healthcare Quantis solutions that contain HES, ECDS, MHSDS or DIDs data will be underpinned by additional terms and conditions that ensure the data are used for the appropriate purposes, including: > The outputs are not to be used principally for commercial purpose > Where appropriate, an official NHS/industry joint working contract to be put in place. > The same aggregated HES, ECDS, Mental Health data or DIDs data outputs to be made available, if requested, to all health and social care organisations, irrespective of their value to the company The Quantis system is only to be provided to a restricted number of named users, who have undergone and passed protocol training within one month of access being granted. [2 paragraphs unchanged] These outputs assist health and social care in creating and delivering the [30 words unchanged] Year Commissioning Plans and Joint Strategic Needs Assessment (between health and social ~~care).~~ care), optimal pathway modelling as well as GIRFT service reviews. The ability to provide feedback in relative real time on the success of a new pathway or new service, is critical to the realisation of the redesign project. This means a monthly breakdown and routine data refresh at record level will be required. Monthly data is vital to show changes at an organisational level such as ICSs what is happening in their organisation and how that is changing, in as close to real time as available. Understanding and elucidating actionable insights on challenges they meet, or impacts of service change they make, based off data, makes a stronger case for service improvement. Monthly trends are important in all stages of change – analysis, planning, implementation and review. Working with out-of-date data, may mean decisions are taken without knowing the most recent situation available. An example of this would be during the covid period, and through recovery, where organisations have had to rapidly reconfigure their services and some are just “keeping their head above water”, being able to identify blockers and bottle necks to services in this upheaval period can only be seen with the most recently available data, as it comes through, and alerts to future impacts can be assessed. Wilmington Healthcare has complete editorial control meaning that the outputs are developed completely independently of the commissioner of the work and there is no bias in terms of the findings. [1 paragraph unchanged] • Relate HES, Mental Health data or DIDs data outputs to the use of commercially available products, an example being the prescribing of individual pharmaceutical products • Include any analysis on the impact of commercially available products an example being individual pharmaceutical ~~products~~ product The ability to provide feedback in relative real time on the success of a new pathway or new service, is critical to the realisation of the redesign project. This means a monthly breakdown and routine data refresh at record level will be required. ~~Wilmington Healthcare has complete editorial control meaning that the outputs are developed completely independently of the commissioner of the work and there is no bias in terms of the findings.~~ [8 paragraphs unchanged]

Processing activities

~~All organisations party to this Agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes~~ All organisations party to this Agreement must comply with the Data Sharing [11 words unchanged] that use) by “Personnel” (as defined within the Data Sharing Framework Contract ~~i.e:~~ i.e.: employees, agents and contractors of the Data Recipient who may have access to that data). Wilmington Healthcare links organisation level (aggregated) data from HES, ECDS, Mental Health data or DIDs to publicly available data (examples of this include GP Prescribing, Quality Outcomes Framework (QOF) and Organisation Data Services (ODS) data), but only to meet the objectives listed and not for the purposes of re-identifying any individual. For clarity, no other datasets (except for those expressly permitted as part of the Data Sharing Agreement) will be linked at patient level. Record level data supplied by NHS Digital to Wilmington Healthcare is not supplied to third parties not mentioned in this agreement and therefore no identifiable data is either available nor can be inferred. [3 paragraphs unchanged] Record level data are loaded into a data warehouse, on a dedicated ~~private, non-external facing server, prior to aggregation into~~ private server. For Quantis dashboards and other dashboard or tabulation solutions, data are aggregated in a separate ~~database (both of which are~~ database, stored ~~independently in the same location in England).~~ independently. The final aggregated, small number suppressed; non-identifiable outputs are uploaded to professionally [25 words unchanged] these servers and will not process any data for the purposes above. 10 years of data are required as Wilmington Healthcare undertakes projects for rare disease studies, where a specific diagnosis for that condition is not available. This requires detailed analysis of patient diagnoses over the period of 10 years in order to develop patterns of diagnoses/procedures for patients and create a cohort of patients most likely to have a rare condition in order for them to be tested and treated appropriately. Wilmington Healthcare require this 10-year period of data as these conditions impact less than 5 in 10,000 patients, therefore, this length of time is necessary to develop a robust cohort of patients for analysis. N.B. Under this application, only aggregated outputs that are small number suppressed in line with the HES Analysis Guide will be produced. Anything other than this will require a separate application and agreement with NHS Digital. Record level data is stored separately to aggregated data. All pseudonymised record level data is stored in the storage locations specified within this agreement in England, with there being no possibility of users of any solutions accessing record level data. For Quantis augmented analytics, the system will dynamically present aggregated, small number suppressed, non-identifiable outputs in line with the HES analysis guide. The system is held entirely on the listed servers and accessed only through the secure sign-on web link. No record level data is held on any customer’s local machine at any time, all pseudonymised record level data is stored in the storage locations specified within this Agreement, in England. All tools present only data aggregated and non-identifiable in line with the HES analysis guide. The hosting organisation have no access to the data on these servers and will not process any data for the purposes above. [1 paragraph unchanged] ~~Only the final aggregated database links to user interfaces, meaning record level data is inaccessible via any user interface.~~ Wilmington Healthcare and Wilmington shared Service Ltd are wholly owned subsidiaries of Wilmington Plc. Access to the pseudonymised, record level data are only available for named, trained substantive employees of Wilmington Healthcare or Wilmington Shared Services Ltd. Access will not be granted to any individual unless they need to load and maintain the dedicated data warehouse hosting this data (which is solely to produce an output for Wilmington Healthcare, and the staff members requiring access will only be limited to those that have a need to process the data for the Wilmington Healthcare outputs specified), for Quality Assurance, or to analyse the data to produce the outputs specified within this Agreement. Record level data is stored separately to aggregated data. All pseudonymised record level data is stored in the storage locations specified within this agreement in England, with there being no possibility of users of any solutions accessing record level data. Wilmington Healthcare is a wholly owned subsidiary of Wilmington Plc. Access to the pseudonymised, record level data are only available for named, trained members of Wilmington Healthcare or Wilmington Plc Shared Services staff. Access will not be granted to any individual unless they need to load and maintain the dedicated data warehouse hosting this data (which is solely to produce an output for Wilmington Healthcare, and the staff members requiring access will only be limited to those that have a need to process the data for the Wilmington Healthcare outputs specified), for Quality Assurance, or to analyse the data to produce the outputs specified within this agreement. [2 paragraphs unchanged] • Establish which Healthcare Resource Group (HRG) codes are being applied to each episode in a spell at record level, prior to aggregating into user output data. This allows users to view whether a more efficient tariff or route of treatment could be used. ~~• to aggregating into user output data. This allows users to view whether a more efficient tariff or route of treatment could be used.~~ [6 paragraphs unchanged] Access to the network drive and servers that contain the pseudonymised record level data for record level processing prior to aggregation and ~~aggregated databases~~ suppression are restricted to these named, fully trained individuals with internal audits carried out (and documented) to ensure that only the appropriate, trained personnel have access to these datasets. The data are processed in accordance with the ISO27001:2013 accreditation that is currently certified to Wilmington Healthcare. The named, trained individuals that have access to the HES, ECDS, MHSDS and DIDs record level data all fall within the current scope of this accreditation and have been fully audited. Record level data is stored separately to aggregated data. All other users will receive aggregated, small number suppressed, non-identifiable data which has all suppression rules applied in line with the HES Analysis guide and the guidance within Part 2, section 3.5 of the Data Sharing Framework contract. Processing can only take place by these named, trained individuals logging into a secure desktop gateway. All processing takes place by accessing the secure remote desktop that is within the secure storage environment specified within this DSA. No data is downloaded to a local device and the aggregated, small number suppressed outputs are stored on an environment that can only be accessed via the gateway. All traffic through this gateway is encrypted to minimum 2048-bit encryption. The machines of the individuals that have access to record level data are all encrypted with at least 256-bit encryption and password protection. Data will be not stored on any local device or machine. These individuals will process the data either at one of the Processing locations specified within the Data Sharing Agreement or from their home. Access from home is only available through an encrypted Laptop with password protection supplied by Nasstar and through the secure desktop gateway. No processing takes place on the local machine and no data will be downloaded to the local device. The data are processed in accordance with the ISO27001:2013 accreditation that is currently certified to Wilmington Healthcare. The named, trained individuals that have access to the HES, ECDS, MHSDS and DIDs record level data all fall within the current scope of this accreditation and have been fully audited. All other users will receive aggregated, small number suppressed, non-identifiable data which has all suppression rules applied in line with the HES Analysis guide and the guidance within Part 2, section 3.5 of the Data Sharing Framework contract. Processing can only take place by these named, trained individuals logging into a secure desktop gateway. All processing takes place by accessing the secure remote desktop that is within the secure storage environment specified within this DSA. No data will be downloaded to a local device and the aggregated, small number suppressed outputs are stored on an environment that can only be accessed via the gateway. All traffic through this gateway is encrypted to minimum 2048-bit encryption. The machines of the individuals that have access to record level data are all encrypted with at least 256-bit encryption and password protection. Data will be not stored on any local device or machine. These individuals will process the data either at one of the Processing locations specified within the Data Sharing Agreement or from their home. Access from home is only available through an encrypted Laptop with password protection supplied by Nasstar and through the secure desktop gateway. No processing takes place on the local machine and no data will be downloaded to the local device. The processing activities carried out by Nasstar are as follows: ~~The processing activities carried out by Nasstar will be as follows:~~ [2 paragraphs unchanged] The data required by Wilmington Healthcare to produce the outputs, other than the rare disease studies will only contain the most recent 5 full years of data and at the point the most recent provisional data becomes finalised the oldest year of data will be removed from the outputs. The data required to produce longitudinal rare disease outputs requires 10 years of data as these conditions impact less than 5 in 10,000 patients, therefore, this length of time is necessary to develop a robust cohort of patients for analysis. [1 paragraph unchanged] The processing activities carried out by Snowflake will be as follows: Snowflake is contracted by Wilmington Plc to supply managed cloud hosting and support services to the Wilmington group (i.e., Wilmington Plc and its subsidiaries). Their primary responsibilities are to provide dedicated cloud warehouse environment hosted within AWS Platforms on the EU-West-2 (London) region, and support including a service desk. All data hosted on the dedicated infrastructure and secured utilising network separation and access control via firewalls and other security mechanisms. Snowflake have capabilities to support the infrastructure that hosts the data but not the permissions to access the data. Snowflake’s admin / maintenance of the cloud containing the data will be restricted to UK based personnel. All final outputs from this cloud warehouse will contain only data aggregated with small numbers suppressed in line with the HES Analysis Guide.

Expected output

[7 paragraphs unchanged] Quantis has a growing user base, including NHS, non-NHS, and charity users, resulting in increasing numbers of users benefitting from the data insight and analysis provided from the system. [3 paragraphs unchanged] Costed ~~Integration~~ Integrated Pathways [7 paragraphs unchanged] Quantis portal system [3 paragraphs unchanged] These outputs typically contain analysis of a disease and/or its management, predominately in secondary care. The methodology of the analysis is based on in-house research undertaken by Wilmington Healthcare using non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable, record level data. Augmented analytics ~~These outputs~~ Outputs typically contain analysis of a disease and/or its management, predominately in secondary care. The methodology of the analysis is based on in-house research undertaken by Wilmington Healthcare using non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable, record level data Outputs often contain patient cohort analysis which requires an aggregation of pseudonymised, non-sensitive [31 words unchanged] is imperative to being able to undertake the analysis for these outputs. [2 paragraphs unchanged] • Assess (a) pathway(s) and/or organisation(s) performance against similar comparisons and to understand where change could be required to achieve QIPP or GIRFT planning or implementation of NHS long term plans / ~~strategies~~ strategies. [2 paragraphs unchanged] • Identify local health economies which are managing a specific disease effectively. [6 words unchanged] what success will look like in terms of reduced inappropriate hospital activity & and cost plus decreased comorbidity patient disease [7 paragraphs unchanged] Quantis ~~outputs are~~ portal system is an electronic online ~~and offline (iPad application)~~ commissioning, healthcare and service improvement support ~~solutions~~ solution generating outputs ~~which use~~ that are aggregated, small number suppressed in line with the HES Analysis Guide, non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable data as the outputs. The ~~service~~ Quantis portal outputs are used by registered, authenticated users who have access under specific terms and conditions, over a sustained period, typically of one to two years. Record level data is stored separately to the aggregated data and cannot be accessed through the Quantis system. All pseudonymised record level data is stored in the storage locations specified within this agreement, in England, with there being no possibility of users accessing record level data. Pseudonymised, non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable record level data is required so that trained, named individuals can, as examples be able to: The Quantis Portal system is only provided to a restricted number of named users, who have undergone and passed protocol training within one month of access being granted. For Quantis Dashboards record level data are loaded into a data warehouse, on a dedicated private, non-external facing server, prior to aggregation into a separate database (both of which are stored independently in England). The final aggregated, small number suppressed; non-identifiable outputs are uploaded to professionally hosted user-facing servers in England. These professionally hosted servers are provisioned purely for hosting purposes. The hosting organisation have no access to the data on these servers and will not process any data for the purposes above. For Quantis augmented analytics, the system dynamically presents aggregated, small number suppressed; non-identifiable outputs in line with the HES analysis guide to a restricted number of named users, who have undergone and passed protocol training prior to access being granted. The system is held entirely on the listed servers and accessed only through the secure sign-on web link. No record level data is held on any customer’s local machine at any time, all pseudonymised record level data is stored in the storage locations specified within this agreement, in England. All tools present only data aggregated and non-identifiable in line with the HES analysis guide. The hosting organisation have no access to the data on these servers and will not process any data for the purposes above. Other Quantis dashboards may be hosted on microsites – where the purpose is to gain awareness for healthcare related challenges and as such may be accessed by health care professionals or members of the public – for systems such as this record level data are loaded into a data warehouse, on a dedicated private, non-external facing server, prior to aggregation into a separate database (both of which are stored independently in England). The final aggregated, small number suppressed; non-identifiable outputs are uploaded to professionally hosted user-facing servers in England. These professionally hosted servers are provisioned purely for hosting purposes. The hosting organisation have no access to the data on these servers and will not process any data for the purposes above. For most outputs listed, Wilmington Healthcare require 5 years of pseudonymised, non-sensitive (HES or DIDS) or sensitive (MHSDS), non-identifiable record level data to be able to: [5 paragraphs unchanged] Before Wilmington Healthcare sign any terms and conditions for outputs that contain HES, Mental Health data or DIDs data, the purpose for the output is reviewed by the internal advisory board. The advisory board assess the potential for each project to benefit the health and social care sector before approving. As stated above, the advisory board has been restructured to include independent lay members. However, 10 years of data are required as Wilmington Healthcare undertakes projects for rare disease studies, where a specific diagnosis for that condition is not available. Wilmington Healthcare require this 10-year period of data as these conditions impact less than 5 in 10,000 patients, therefore, this length of time is necessary to develop a robust cohort of patients for analysis. ~~For the Quantis system, access works as follows:~~ Before Wilmington Healthcare sign any terms and conditions for outputs that contain HES, Mental Health data or DIDs data, the purpose for the output is reviewed by the internal advisory board. The advisory board assess the potential for each project to benefit the health and social care sector before approving. The advisory board includes independent lay members. Each user organisation agrees a legal contract with Wilmington Healthcare stipulating Terms and Conditions (T&Cs) as specified within the Objective for Processing section. This contract contains but is not limited to: For the Quantis portal system, access works as follows: Each user organisation agrees a legal contract with Wilmington Healthcare stipulating Terms and Conditions (T&Cs) as specified within the Objective for Processing (5a) section. This contract contains but is not limited to: [3 paragraphs unchanged] ~~The purposes that the outputs can be used for~~ The users of the Quantis system are provided with HES Protocol training, which is an assessment that demonstrates that users know the regulations plus T&Cs relating to use of HES, Mental Health data or DIDs data outputs. Users are provided with secure login details (username and password) that they must authenticate to access the Quantis system. ~~The purposes that the outputs cannot be used for~~ The users of the Quantis system are provided with HES Protocol training, which is an assessment that demonstrates that users know the regulations plus T&Cs relating to use of HES, Mental Health data or DIDs data outputs. ~~Users are provided with secure login details (username and password) that they must authenticate to access the Quantis system.~~ [1 paragraph unchanged] Examples of outputs produced using NHSD ~~data:~~ data by Wilmington Healthcare, with case studies published online: ~~by Wilmington Healthcare can be found online:~~ [1 paragraph unchanged] • NIEMANN- PICK C (NPC) ALGORITHM: Wilmington Healthcare have produced an algorithm [13 words unchanged] to identify patients who may have attenuated Niemann-Pick C (NPC). NPC is ~~aneuro-visceral~~ a neuro-visceral lipid storage disorder which causes progressive neurological disease. The disease usually starts [87 words unchanged] search for patients with a high suspicion of a diagnosis of NPC. [11 paragraphs unchanged] It is not possible to provide full details of all specific outputs and timings because many of the projects on which Wilmington Healthcare will use NHS Digital data within the year have not yet been tendered. Wilmington Healthcare works on multiple projects, at short notice, for a large number of different national, regional and local organisations. • DEMENTIA PATHWAY TOOLKIT: In partnership with the University of Manchester Institute of the Brain, the Dementia Academy, NHS England Greater Manchester Network a piece of work was required to enable understanding of which patient pathways should change to address common issues relating to emergency hospital admissions. The data has spearheaded the development of a multidisciplinary, multi-agency integrated dementia pathway toolkit which highlights trigger factors for GPs, that might precipitate hospital admission so that these can be avoided. Patients and carers were central to the production of the work along with organisations including Greater Manchester Police, ambulance service and voluntary sectors were involved. All 12 CCGs in the area have participated and service transformation is underway. The findings have also been shared with other heath economies. • DIABETES HEALTH ECONOMY TOOL: A client and Wilmington developed a diabetes dashboard system, highlighting variation in metrics such as non-elective admissions in diabetic patients, as well as understanding how related diabetic co-morbidities such as hypoglycaemia can affect hospital admissions. The outputs from these dashboards were used to support the case for a band 7 diabetic specialist nurse, and recently have been successful in receiving funding and recruiting into a substantive band 7 post. • Chronic Kidney Disease (CKD): Published in October 2020, in partnership with a Kidney Care UK and an expert clinical stakeholder group Wilmington Healthcare developed an optimal pathway ‘Sid’s story’ using the Right Care methodology and a Delphi consensus process to provide clarity on the issues faced in managing CKD when dialysis has to be the modality of choice by bringing the scenarios to life in a very realistic way. The pathways compared optimal effective referral protocols vs referral breakdown and loss to the system. The resource provides practical guidance on what everyone can do to improve care and reduce the risks for patients in a systematic and efficient way.

Expected measurable benefits

[19 paragraphs unchanged] ~~NIEMANN-PICK (NPC) ALGORITHM:~~ HEART FAILURE DATA MAPS (delivery spring/summer 2022): It is expected that less NPC patients will go undiagnosed for many years and will receive appropriate treatment more promptly. Proper treatment will make it less likely that the patient’s education and/or employment will be affected dependent on the severity of the illness. Accurate and prompt diagnosis will lessen unnecessary burden on the NHS. ~~HEART FAILURE DATA MAPS:~~ [3 paragraphs unchanged] BLOOD CANCER ~~DASHBOARD:~~ DASHBOARD (End of 2022): [3 paragraphs unchanged] Wilmington Healthcare’s legitimate interest of positively impacting healthcare has been fulfilled through the successful management and completion of various projects within the healthcare sector and advising organisations how they can best improve their services METASTATIC BREAST CANCER PUBLICATION (Expected publication Autumn 2022) Metastatic breast cancer (MBC) is an increasingly controllable disease, with increasing survivorship. Record collection currently focusses around deaths from cancer, whist often overlooking those surviving and living with breast cancer. Given the unknown number, the publication aims to ascertain the prevalence of people ling with breast cancer. This will highlight the need, as well as planning at a national level for the future. The report will cover national diagnoses and admissions of patients with breast cancer, and how this is changing over the previous years. It will highlight the impact of covid, and recovery. This work is in conjunction with a clinical member of the national cancer research institute breast clinical study group. The aim is to enable discussion as to how we can design services better, plan resources such as chemo units or specialist nurses, to optimise pathways, as well as increasing the quality of life of patients living with breast cancer. Wilmington Healthcare’s legitimate interest of positively impacting healthcare has been fulfilled through the successful management and completion of various projects within the healthcare sector and advising organisations how they can best improve their services.

Benefits reported

[1 paragraph unchanged] DISEASE INSIGHT REPORT: MEASURING THE BURDEN OF HOSPITALISATION IN ~~MS:~~ MS (2017): [3 paragraphs unchanged] With the help of a Health Foundation “Innovating for Improvement" grant, they [41 words unchanged] if they could resolve crisis issues that might otherwise result in hospital ~~admission~~ admission. [6 paragraphs unchanged] ~~SPMS REPORT:~~ SECONDARY PROGRESSIVE MULTIPLE SCLEROSIS (SPMS) REPORT: [2 paragraphs unchanged] Data analysis carried out to support the creation of an optimal care [11 words unchanged] heart valve benefitted from improved quality of life, whilst the NHS saved the NHS £20,000 per ~~patient. The money saved can~~ patient in costs, which could then be ~~re-allocated~~ reallocated to ~~improving~~ other ~~service areas.~~ areas of the NHS. [6 paragraphs unchanged] This work revealed that the main reason for emergency admission in MS [12 words unchanged] NHS over £40k per year. This information was used as part of of a business case for a portable bladder scanner. Since this time there [7 words unchanged] admission, saving patients and their families the distress of a hospital stay. [5 paragraphs unchanged] DIABETES HEALTH ECONOMY TOOL: A client and Wilmington developed a diabetes dashboard system, highlighting variation in metrics such as non-elective admissions in diabetic patients, as well as understanding how related diabetic co-morbidities such as hypoglycaemia can affect hospital admissions. The outputs from these dashboards were used to support the case for a band 7 diabetic specialist nurse, and recently have been successful in receiving funding and recruiting into a substantive band 7 post. CARDIAC DEVICES GIRFT REGION TOOL: An NHS client of Wilmington Healthcare developed a data tool to support with work they are doing with a Cardiac Provider Collaborative in South London. This work involves a network of clinicians who sit on a clinical council and includes 5 Trusts from the region. These trusts were previously working individually, using individual trust data and GIRFT regions within the tool the area was able to take a collaborative view on a collective approach. Emphasis was placed on clinical data and the criteria supplied for making strategic decisions. The tool enabled and supported the clinical council to understand, quantify and then drive down unwarranted variation and create savings. The outcome of the clinical council is projected to be £1.3 million of savings per year which can be utilised for bettering outcomes of patients in the system. Feedback from a member of the clinical council includes "HES data was one of the fundamental data sets for the cardiac clinical council, and ultimately on what its successful outcome was based". NIEMANN-PICK (NPC) ALGORITHM: It is expected that less NPC patients will go undiagnosed for many years and will receive appropriate treatment more promptly. Proper treatment will make it less likely that the patient’s education and/or employment will be affected dependent on the severity of the illness. Accurate and prompt diagnosis will lessen unnecessary burden on the NHS.

Objective for processing

Wilmington Healthcare works across the healthcare community, including local and national NHS organisations and the private, pharma and third sectors.

The data requested is necessary for the purposes of the legitimate interests pursued by the controller, except where such interests are overridden by the interests or fundamental rights and freedoms of the data subject which require protection of personal data, in particular where the data subject is a child covered by Article 6 (1)(f) of GDPR). Wilmington Healthcare Ltd is a commercial company and charges for its services (on a profit making basis) to specifically provide services to benefit NHS health and social care. The processing of the data is essential - without it, Wilmington would not be able to positively impact healthcare to the same extent, with case studies highlighted in the recent NHS Digital Clinical Review: The Impact of data release through the Data Access Request Service. The data will be used to support the NHS either directly through the delivery of tools / tables and reports or indirectly through non-NHS organisations, where solutions are provided with the NHS as the end beneficiary. Examples of this are provided in the benefits section below.

The Legal basis for processing of personal data relating to patient health is under Article 9(2)(j)of the GDPR - Processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject. The data subjects’ interests and fundamental rights are protected through appropriate minimisation of fields; protection of the data in a secure environment and guaranteeing secure destruction at any stage at the request of NHS Digital or after a defined period on completion of the project.

Wilmington Healthcare look to undertake projects that incorporate the Hospital Episode Statistics (HES), Emergency Care Data Set (ECDS), Mental Health Services Data Set (MHSDS) or Diagnostic Imaging Dataset (DIDs) data with customers in the Life Sciences (pharmaceutical, medical device, bioscience), charity / not for profit / patient organisations, NHS organisations and academia. A workplan is supplied to NHS Digital that contains the project, details of the data included, minimisation applied to the data for that project along with the name of the customer and industry that they are classified within.

Wilmington Healthcare will also be working in support of the delivery of New Models of Care and therefore will be required to work with customers and the new NHS bodies as they form that yet remain unnamed. For example, Integrated Care Providers (ICS and ICPs) and other bodies that form to provide support or services to the healthcare sector.

Wilmington Healthcare and Wilmington Shared Services Ltd are wholly owned subsidiaries of Wilmington Plc. Although Wilmington Plc is the parent company, Wilmington Plc do not have any influence on the means of purpose for data processing, nor do their employees process the data. Wilmington Plc are not acting under any capacity as a either a Data Processor or Data Controller. Wilmington Healthcare are the data controller, they determine the way the data is processed, the purposes, and administer the advisory board who review each project. Wilmington Healthcare control all products produced with the data and have the product revenue and costs going through it. Wilmington Shared Services Ltd substantively employ the central services team but do not control any products. Access to the pseudonymised, record level data are only available for named, trained members of Wilmington Healthcare or Wilmington Shared Services Ltd staff, who are all substantively employed by either Wilmington Healthcare or Wilmington Shared Services Ltd.

The data processing Wilmington Shared Services Ltd carry out are described in the Operational Level Agreement, and include activities such as:

• Access control and user management to relevant data assets

• Management of HES/licenced data in line with requirements of licence agreement for Wilmington Healthcare

1. Raise disease awareness, management and diagnosis through analysing data and publishing reports and tabulations which are available in the public domain.

3. Produce longitudinal rare disease analysis and reports which enable patients to receive the correct treatment for a condition that had not yet been diagnosed.

The data will be used to support the NHS either directly through the delivery of tools and bespoke analysis or indirectly through non-NHS organisations, where solutions are provided with the NHS as the end beneficiary. Examples of this have been provided within the Expected Measurable Benefits section of this Agreement. Wilmington Healthcare and Wilmington Shared Services Ltd are wholly owned subsidiaries of Wilmington Plc. Access to the pseudonymised, record level data are only available for named, trained members of Wilmington Healthcare or Wilmington Shared Services Ltd staff, who are all substantively employed by either Wilmington Healthcare or Wilmington Shared Services Ltd. All staff working for Wilmington Shared Services Ltd have an honorary contract addendum to their employment contract, covering compliance and incident disclosure responsibilities for the data.

Commissioning Excellence, a directorate within Wilmington Healthcare, has official NHS England niche provider status for commissioning support. The Niche provider status was established by NHS England for the areas of commissioning support that providers would require in order to undertake effective commissioning. Individuals were invited to register based on their credibility in the commissioning support provider market and register with NHS England to demonstrate their competency in providing the range of services that make up commissioning support. The provider must be able to demonstrate their competence through on-going involvement in commissioning support and this is evidenced annually through contracts obtained, professional development in the specialist area and the outcomes of work undertaken.

> Non-sensitive emergency care data since 2019, using data from 2017/18 till current latest available releases.

> Non-sensitive HES data since 2008, using data from 2006/07 till current latest available releases.

> Non-sensitive DIDs data since 2013, using data from 2011/12 till current latest available releases.

> Sensitive Mental Health data and since 2013, using data from 2011/12 till current latest available releases.

Full data are required, as Wilmington Healthcare’s outputs are not limited to any particular age, region or any other subgroup or disease risk factor, the HES and ECDS data has been restricted to only the relevant fields. Data shall be minimised on a project-by-project basis to ensure that only the appropriate fields are output. Fields are required in order to provide accurate information and filter the appropriate scope of records to aggregate into outputs that contain only the relevant information. To assure this, all projects go through Wilmington Healthcare’s Advisory Board, containing lay members, who assess each new project against our NHS Digital DPIA and the DSA to ensure alignment and ensure no variations or new uses of the data.

Data is used in:

> Analysis Phase:

Assess (a) pathway(s) and/or organisation(s) performance against similar comparisons and to understand where change could be required to achieve Quality, Innovation, Productivity and Prevention (QIPP) or GIRFT planning or implement NHS long term plans / strategies.

Data isn’t used to specifically feed into the GIRFT programme. Instead, the data is used to look at and assess the variation in organisations' activity where there are specific GIRFT measures available in HES. For example, where there are OPCS codes mentioned in a GIRFT report, looking for those codes in the data and comparing this with activity levels and best practice to understand areas of variance, and where an organisation could focus their planning to better reach or implement GIRFT opportunities/strategies.

> Planning Phase:

Apply predictive modelling where appropriate to understand the potential impact for patients plus the health and social care system by adopting a clinical pathway or service design which is optimal.

> Implementation Phase:

Enable continual monitoring, communication and education with all NHS stakeholders as to the rationale and requirements for a new clinical pathway or service.

> Review Phase:

Review progress on a frequent basis and to make any necessary, close to real-time, changes to the pathway or service to optimise efficiency.

Wilmington Healthcare undertake numerous projects utilising NHS Digital data on a yearly or one-off bases. Insights including HES data contain Quantis outputs.

Quantis delivers real world healthcare insights, through interactive dashboards and reports, that help clients understand the ever-changing health and care landscape. With Quantis clients can access intelligent insight, at a national or localised level to:

• Identify where service efficiencies and patient outcomes can be improved

• Increase the appropriate diagnosis, management and awareness of a disease

• Map performance locally and nationally where specialist teams/resources are in place

• Provide collaborative service solutions that address healthcare inequalities

> The outputs are not to be used principally for commercial purpose