Sentinel Stroke National Audit Programme-DHCW Deaths

Healthcare Quality Improvement Partnership (HQIP) and Digital Health and Care Wales (DHCW) require access to NHS England data for the purpose of the following audit programme: Sentinel Stroke National Audit Programme (SSNAP).

SSNAP is based in the School of Population Health and Environmental Studies at King’s College London (KCL). SSNAP measures the quality and organisation of stroke care in the NHS and is the single source of stroke data in England, Wales, and Northern Ireland.

SSNAP measures both the processes of care (clinical audit) provided to stroke patients, as well as the structure of stroke services (organisational audit) against evidence-based standards, including the 2016 National Clinical Guideline for Stroke.

The clinical audit collects a minimum data-set for stroke patients in England, Wales, and Northern Ireland in every acute hospital, and follows the pathway through recovery, rehabilitation, and patient outcomes at a 6-month assessment for each patient. It is the only national stroke register in the world to collect longitudinal data on the processes and outcomes of stroke care up to 6 months post stroke. Every year, data from approximately 85,000 patients are submitted to the audit web-tool for analysis, representing over 90% of all stroke hospital admissions in the NHS.

The overall aim of SSNAP is to provide timely information to clinicians, commissioners, patients, and the public on how well stroke care is being delivered so it can be used as a tool to improve the quality of care that is provided to patients.

The following is a summary of the aims of the audit programme provided by or on behalf of HQIP and DHCW:

• to benchmark services regionally and nationally.

• to monitor progress against a background of organisational change to stroke services and more generally in the NHS.

• to support clinicians in identifying where improvements are needed, planning for and lobbying for change and celebrating success.

• to empower patients to ask searching questions.

The following NHS England data will be accessed:

• Civil Registrations of Death (CRD) – necessary for the following reasons:

­ to link with SSNAP data to report case mix adjusted 30-day mortality rates and longer-term survival rates for acute hospitals in England and Wales.

­ to link with SSNAP data to enable clinical teams to review the quality of care delivered against patient outcomes and make improvements to how the care of stroke patients is managed in the future.

­ to show survival at other intervals such as at 6 months and 1 year.

The level of the data will be:

• Identifiable for CRD – necessary to evaluate the success of the data linkage or to ensure data records are up to date and accurate.

The data will be minimised as follows:

• Limited to a cohort of 300,000 stroke patients identified by KCL. The cohort only comprises stroke patients who have been admitted to hospital.

NHS England are controllers for the English aspect of the audit. All data flows for this aspect are reflected under DARS-387635-C9Y0W.

Digital Health and Care Wales (DHCW) are the controller for Welsh data in the SSNAP audit, including from the Civil Registration (Deaths) released under DARS-NIC-387635-C9Y0W. The permissions for the flow of the Welsh mortality data are represented under DARS-NIC-721538-N6B1V.

The common law duty of confidentiality is addressed by:

• Section 251 from the onset time of stroke until 6 months after the stroke.

• Consent from 6 months after the stroke onwards.

HQIP and DHCW are the joint controllers as the organisations responsible for ensuring that the data will only be processed for the purposes described above.

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

Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller.

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

Article 9(2)(i) - processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Domestic Law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy.

This processing is in the public interest because it aims to drive improvements in the quality and safety of care, and to improve outcomes for patients.

The SNNAP audit is commissioned by NHS England.

The funding is provided by HQIP. The funding is specifically for the audit programme described. Funding is in place until 31/03/2026.

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

King's College London (KCL) and Net Solving Limited are processors acting under the instructions of HQIP and DHCW. KCL role is limited to managing the SSNAP audit.

SSNAP regularly (usually annually) meet patient groups to gain feedback about important issues for patients. There are patient representatives seated on SSNAP’s steering group – the ICSWP (The Intercollegiate Stroke Working Party). SSNAP work in collaboration with stroke survivors and carers, particularly with Speakeasy which is a charity based in Bury which supports people with aphasia, and the Stroke Research Patient and Family Group which is based at King’s College London. SSNAP has and will continue to meet regularly with these groups.

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

NHS England data will provide the relevant records from the CRD 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 the recipient

The data will not be transferred to any other location.

The data will be stored on the “SSNAP web tool” which is hosted on a dedicated server at Net Solving Limited. The server is a physical, ‘bricks and mortar’ server that has been rented from ANS Group Ltd. Net Solving Limited and ANS Group Ltd are two separate entities. ANS Group Ltd is a hosting company that provides hosting services to some of Net Solving Limited’s clients. The contract for the ANS Group Ltd server is between KCL and ANS Group Ltd. Net Solving Limited have been given access to the physical, bricks and mortar server so that they can support the system.

The data will be accessed onsite at the premises of KCL only.

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

Access is restricted to substantive employees of KCL who have authorisation to access the data from the Programme Manager.

Net Solving Limited and ANS Group Ltd are not permitted to access the data.

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

The data will not be linked with any other datasets not listed in this agreement.

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

Analysts/researchers from KCL will process the data for the purposes described above.

The expected outputs of the processing will be:

• A database to be utilised as a resource for health research via the SSNAP web tool.

• The following outputs are expected to be produced regarding mortality within 30 days of hospital admission for stroke:

o An annual report at Inetgrated Care Board (ICB) / Local Health Board (LHB) level (see www.strokeaudit.org/annualreport).

o An ICB/LHB dashboard.

o An ICB/LHB public table of mortality results per ICB/LHB which are available at https://www.strokeaudit.org/results/Clinical-audit/National-Results.aspx.

o A team level public table of mortality results per team which is available at https://www.strokeaudit.org/results/Clinical-audit/National-Results.aspx. (Team usually equates to a hospital).

• For statistical purposes such as monitoring trends, approved clinical users and registered individuals at Trusts can access date of death for patients they submit to the audit derived from NHSE mortality data. This information is accessible to clinical users at participating teams via the SSNAP webtool.

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.

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

• All published reports are hosted on the SSNAP website (www.strokeaudit.org).

• National and internation clinician conferences (e.g., European Stroke Organisation Conference).

• National patient-focused conferences (e.g., Annual Stroke Club Conference). Flyers, leaflets and reports can be found at https://www.strokeaudit.org/PatientInfo.aspx.

• Press releases, newsletters, e-bulletins including those run by King’s College London and the Stroke Association, and twitter (@SSNAPAudit).

• Flyers have been created to provide simple, succinct information on how to interpret mortality results. Ebooks, online interactive reports, audiobooks, and online videos have been used to present results in accessible, innovative formats (see www.strokeaudit.org).

Case ascertainment reports are produced quarterly. Mortality reporting is undertaken at an annual level.

The findings of this audit programme are expected to contribute to evidence-based decision-making for policy-makers, local decision-makers such as doctors, and patients to inform best practice to improve the care, treatment and experience of health care users relevant to stroke patients.

Case ascertainment information may be used to target trusts who are not achieving good levels of audit case ascertainment. This is hoped to lead to more complete data and more valid results in future audit. Complete audit information is essential for service improvement, and improvements to stroke patient care.

ICBs may access the published mortality within 30 days of hospital admission information and use it to improve services through identification of good and bad practice. This may be of benefit both in terms of better value for money and better patient outcomes.

Mortality analyses at these population levels also help ICBs and Sustainability and Transformation Partnerships (STPs) in the debate around where services should be reconfigured by enabling the use of appropriately adjusted mortality information. As per agreed protocol, outlier ICBs in future reporting periods may again be contacted using an outlier processes to discuss where improvements in stroke care are needed in order to benefit both in terms of better value for money and better patient outcomes. Publishing this information in the future is key to ensuring ICBs with high mortality rates are informed of this, and have the opportunity to improve.

Similarly, trusts may use team level mortality within 30 days of hospital admission to identify trends and good practice, again leading to better patient outcomes. In previous years, mortality outliers have often requested a stroke peer review visit to help identify key ways to improve their service. Subsequent quality improvement programmes are then implemented by those outlier services, following from a detailed peer review visit. Outlier teams may again be contacted using an outlier processes to discuss where improvements in stroke care are needed with the Chief Executive, medical director and clinical lead for stroke. This information may be put into the public domain so patients and the public can see which hospitals have poor outcomes, for example through the MyNHS website. A stroke peer review visit may be offered to outlying teams to assist with identifying key areas for improvement and ways to achieve that improvement. Feeding back mortality information to teams allows teams to investigate their patient outcomes and put in place ways to improve, for example by investigating patient deaths following the use of thrombolysis.

Statistical analyses investigating longer-term mortality are hoped to have the following benefits:

• assessing the real-world benefit of new interventions such as intra-arterial intervention (mechanical thrombectomy), blood pressure lowering for haemorrhagic stroke patients and intermittent pneumatic compression stockings

• tracking changes in mortality trends over time

• monitoring the effect of reconfiguring services

• monitoring the effect of introducing 7-day working

• monitoring the impact of service decommissioning.

This work is hoped to therefore benefit a range of stakeholders including clinical teams, policy makers, patients and the public.

Mortality information has been fed back to trusts in case-mix adjusted models, and outlier trusts have been identified. These trusts were contacted and encouraged to undertake case note reviews of their fatalities to identify areas for improvement. Outlying trusts were also offered a full peer review visit by the Stroke Programme, and a number of outlying trusts have taken up this offer to help identify where improvements in their service need to be made. Subsequent quality improvement programmes are then implemented by those outlier services. The ability to adjust for variables such as stroke severity using the SSNAP Civil Registration/Mortality methodology is important, as stroke severity is a very strong predictor of mortality.

Statistical analyses of the Civil Registration/Mortality data have looked at variation in stroke care and outcomes based on the presence of other diagnoses, socioeconomic status, and organisational characteristics of the hospitals treating the patients. Some of these analyses have already been published. In 2018 the paper ‘Socioeconomic disparities in first stroke incidence, quality of care, and survival’ was published in The Lancet. It is available here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5887080/. Such analyses have the potential to highlight key areas for improvement and to drive change.