The South London Stroke Register: Improving the lives of stroke survivors with data

King’s College London (KCL) and Guy’s and St Thomas’ NHS Foundation Trust (GStT) require access to NHS England data for the purpose of the following research programme: The South London Stroke Register (SLSR): Improving the lives of stroke survivors with data.

The SLSR is a long-running observational study which investigates the incidence, care, and outcomes of stroke in a geographically defined area of London.

The following is a summary of the aims of the research programme provided by KCL:

• To improve the lives of stroke survivors through a program of data collection, analysis, modelling, and use in practice.

• To improve patient care by identifying areas where improvements are needed, allowing effective planning of services, personalised care, and reducing inequalities in access to care and outcomes after stroke.

• To use local data to describe the health, social, and economic effects of stroke.

• To estimate the outcomes and needs of stroke survivors in the longer-term, both individually and at a population level for the next 30 years.

• To estimate the cost of formal care and informal care provided by family and friends, often over many years.

The following NHS England Data will be accessed:

- Civil Registration Mortality – necessary to enable reports of all-cause and cause-specific mortality post-stroke in this population-based register. To create an important source of information on the needs and services required for people living with the long-term consequences of stroke through linking this data with the existing SLSR dataset. To examine the long-term impact of stroke on individuals and society and to calculate and report highly accurate survival times and create models on the cause of death of stroke survivors in this population-based study.

The level of the Data will be identifiable because some SLSR researchers at KCL have access to both the identifiable recruitment database held at KCL, as well as the pseudonymised research database at KCL.

The Data will be minimised as follows:

• The study cohort is limited to approximately 7,500 stroke patients, including individuals who provided direct consent, those recruited through consultee advice, and patients whose NHS England data was accessed under Section 251 support.

• Limited to Data between 1995 to latest available. For each individual patient, date of death and cause of death will only be provided from the date they joined the cohort.

KCL & GStT are the joint research sponsors and the joint data controllers as the organisations responsible for ensuring that the Data will only be processed for the purpose described above.

The funding is provided by The National Institute for Health and Care Research (NIHR). The funding is specifically for the research programme described. Funding is in place until December 2026.

The funder will have no ability to suppress or otherwise limit the publication of findings.

KCL is a joint data controller who also process the data. Microsoft Ltd provides Cloud hosting services to KCL and will store the data as contracted by KCL.

The University of Oxford act in an advisory capacity to the SLSR but do not determine the purpose or means of the processing, or access the NHS England data. The Programme Steering Committee for the stroke register consist of a Professor of Ageing and Stroke Research from University of Leeds, a Professor of medical statistics from University of Bristol, Chair in Health Economics from University of Manchester and a Lay representative for the Intercollegiate Stroke Working Party, all whom work in an advisory capacity and are involved in the wider oversight of the programme and its direction.

Individual researchers (who are substantively employed at KCL) can additionally propose analyses by submitting a data application form to the programme or data manager. The applicant will be required to seek PPIE input or demonstrate why this was not regarded as beneficial for the proposed analysis. All new proposals have to be discussed with and approved by the named SLSR investigators at KCL before any data is released. The SLSR Investigators who form the SLSR governance group meet monthly, at which applications requiring a decision will be considered. It is anticipated that the majority of proposals will incorporate the data requested under this Agreement, however the specific data requirements of each proposal will be agreed upon as part of the proposal review. The data manager maintains a record of all data applications and releases. The minimisation per use will be reviewed and approved by the SLSR governance group, including the chief investigator, at KCL. The data manager then creates a minimum required, pseudonymised dataset for each respective research project on request. Lay summaries of successful applicants in relation to projects that were not part of the initial protocol/Programme Grant will be added to the SLSR website for the benefit of participants and other researchers.

A list of priority analyses were developed at the outset of the current 5-year programme involving all investigators of the programme. This process made extensive use of the feedback from the Stroke Research Patients and Family Group, which is the long-running SLSR public and patient involvement and engagement (PPIE) group.

The programme as a whole receives regular feedback from the Stakeholder Engagement Group, including stroke survivors, clinicians, and policy makers, who point out their priorities and help to shape proposals.

KCL will transfer data to NHS England. The data will consist of identifying details (specifically NHS Number, Date of Birth, and a unique person ID) for the cohort to be linked with NHS England Data.

NHS England will provide the relevant records from the Civil Registrations of Death dataset to KCL. The Data will contain no direct identifying data items but will contain a unique person ID which can be used to link the data with other record level data already held by KCL.

The Data will not be transferred to any other location.

The Data is stored on KCL servers and backed up on Cloud servers provided by Microsoft Ltd.

The Data will be accessed onsite at the premises of KCL and accessed by authorised personnel via remote access.

The Controller(s) 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 the 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 (e.g. who may carry out processing, and for what purpose).

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

Access is restricted to employees at KCL who have authorisation from the Chief Investigator.

All personnel accessing the data have been appropriately trained in data protection and confidentiality.

The Data will be linked at person record level with the SLSR research database held at KCL which does not contain any identifiable patient information. The SLSR research database contains data on the initial stroke event collected from hospital records, SLSR participants and their next-of-kin, and long-term follow-up data on functional outcomes after stroke collected directly from SLSR participants and their next-of-kin. Fact of death will be checked against the SLSR patient databases held at KCL (containing patient identifiable information for the purpose of follow-ups) and deceased patients will be marked as such to avoid any further attempts to contact for follow-up.

The identifying details will be stored in a separate database to the linked dataset used for analysis. All analyses will use the pseudonymised dataset. There will be no requirement and no attempt to reidentify individuals when using the pseudonymised dataset.

Researchers from KCL will analyse the data for the purposes described above.

The expected outputs of the processing will be:

• An annual progress report submitted to the funder (NIHR) throughout the 5-year duration of the Programme Grant. Progress is measured against target dates agreed at the beginning of the programme.

• Submissions to peer reviewed journals. 7 priority research papers are currently in draft and will be significantly enhanced by the data under this Agreement. A similar frequency of submission is expected over the rest of the programme.

• Presentations at national (e.g., UK Stroke Forum) and international (e.g., European Stroke Conference (ESOC)) conferences.

• Publication of a "Stroke Analytics Dashboard" deployed on the KCL server, to be made available to the public and policymakers. It is hoped that the dashboard will be published in 2026.

• Policy briefings, reports, and open-source software to be utilised as a resource for health research.

• A patient-focused biannual newsletter disseminated to all SLSR participants presenting the latest research findings in an accessible way.

The outputs will not contain patient level 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, except where fact of death needs to be shared back to the SLSR patient database held at KCL in order to avoid further attempts to contact for follow-up.

The outputs will be communicated to relevant recipients through the following dissemination channels:

• Journals (e.g., Stroke, NIHR Open Research, Neuroepidemiology, BMC Neurology, and Frontiers in Neurology).

• Conference presentations (e.g., UK Stroke Forum, and ESOC)

• KCL Stroke Research Patient and Family Group.

• Stakeholder Engagement Group.

Research papers and conferences presentations are planned for submission throughout Q1 2026 - Q4 2026.

Stroke is a priority area in NHS England's Long-Term Plan. This research programme addresses key gaps identified in this plan, such as better information about the long-term consequences of stroke and the effective use of data to implement improvements in care. The findings of this research programme are expected to contribute to evidence-based decision making and service planning for policymakers and local decision-makers such as doctors and patients to inform best practice to improve care and treatment.

The use of the data could:

• Help the system to better understand the health and care needs of populations.

• Lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience.

• Advance understanding of regional and national trends in health and social care needs.

• Advance understanding of the need for, or effectiveness of, preventative health and care measures for particular populations or conditions such as stroke.

• Inform planning health services and programmes, for example to improve equity of access, experience, and outcomes.

• Inform decisions on how to effectively allocate and evaluate funding according to health needs.

• Provide a mechanism for checking the quality of care. This could include identifying areas of good practice to learn from, or areas of poorer practice which need to be addressed.

• Support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work).

After linking NHS England mortality data with the long-term follow-up SLSR data on functional outcomes after stroke, the team intend to analyse and quantify the long-term impact of stroke on patients, family, and the wider society. The team plan to produce estimates of the needs of stroke survivors and the nature and cost of formal and informal care provided during post-stroke survival. These models should include future projections of the number of stroke survivors nationally and their level of needs and resource use. It is hoped that these projections will help policymakers to plan future service provision and resource allocation, responding to a detailed assessment of the health and social care needs of stroke survivors.

These models are planned to link socio-demographics, care, and outcomes, which is hoped to improve knowledge about the real-world effectiveness of care, help focus attention on successful past strategies, and build on those for future provision of care. This is hoped to enable the team to assess the real-world benefit of interventions such as thrombectomy (removal of a blood clot), early supported discharge, and secondary prevention strategies. It is hoped that the findings of this research will contribute to the evidence-base for such interventions and lead to improved clinical decision making.

Since the SLSR catchment area comprises an ethnically and socio-economically diverse population, it is hoped that the data under this Agreement could enable the team to further investigate inequalities in outcomes and any associations with inequalities in care. This is hoped to identify areas of improvement where further focus could be given to patients at increased risk of poor outcomes. Where links with changing socio-demography or risk factor profiles are observed, it is hoped that preventive strategies can be planned and implemented which could lead to the implementation of new guidelines/care practices.

The findings of the research using the data under this Agreement will be widely disseminated through presentations at conferences, and journal publications, and other appropriate media. The community of stroke patients is directly informed via the Stroke Research Patient and Family Group, the Stakeholder Engagement Group, and the SLSR Newsletter.

It Is hoped that through publication of findings in appropriate media, the findings of this research will add to the body of evidence that is considered by the bodies, organisations and individual care practitioners charged with making policy decisions for or within the NHS, or treatment decisions in relation to stroke patients.

The SLSR research team is in regular contact with members of SAFE (Stroke Alliance for Europe), who are part of the Stakeholder Engagement Group. SLSR data has in the past informed the SAFE publication “The burden of Stroke in Europe”, and further mutual input is anticipated.

Yielded Benefits is not a requirement for new applications.