Examining intersectional inequalities in effective stroke care and stroke outcomes across England

The University of Essex requires access to NHS England data for the purpose of the following research project:

Examining intersectional inequalities in effective stroke care and stroke outcomes across England

The following is a summary of the aims of the research project provided by the University of Essex:

Stroke stands as the fourth leading cause of death in the UK and one of the biggest causes of disability. There are currently an estimated 1 million people in the UK living with the aftermath of stroke, with approx. 30,000 people dying from stroke each year. Furthermore, the incidence of stroke is expected to increase by 60% by the year 2035 in the UK, with the population of stroke survivors expected to double, making stroke a priority for the health system.

While previous research has shown that deprivation, age, gender, ethnicity, and place of residence (rural/urban) each have an impact on stroke care quality, stroke prevalence and stroke outcomes, no studies have considered the impact of the intersection of these inequalities. In order to ensure that no one is left behind when addressing inequalities in health including stroke, an intersectional approach is indispensable. For example, considering the effect of gender and ethnicity separately can lead to missing the unique care experience of an intersecting identity such as the experience of a black woman. Building on this thought the experience of a black woman in a coastal area might be worse than the experience of a black woman in a non-coastal area and an intersectional lens would allows us to identify these unique experiences.

Furthermore, no research within the UK exists that examines the geographical disparities between coastal and non coastal town when it comes to stroke care and outcomes, despite this being highlighted as an area of concern by both the existing literature and the project partner, the local NHS trust. No current research evaluating stroke care services based on a health system approach that considers both quality of care and important aspect of universal health coverage such as availability, accessibility and contact coverage. With resources being distributed unequally within the country and the strains put on the ambulance services due to the COVID-19 pandemic and NHS underfunding, it is both timely and of extreme importance to consider these elements of health coverage alongside quality of care indicators.

The aim of this project is to identify the intersectional inequalities in the effective coverage of stroke care and post-stroke outcomes, and their negative health consequences within England, and provide evidence for improvement.

This research is the quantitative part of the larger CoastGEM (Coastal Gap in Equality for Stroke care Management) project created in partnership between the University of Essex and the East Suffolk and North Essex Foundation Trust to better address inequalities in stroke and to ensure no one gets left behind. This research will be a part of a PhD thesis.

The methodology is split into two sections:

1. A quantitative analysis of data from the Sentinel Stroke National Audit Programme (SSNAP) set to examine the intersectional inequalities in the effective coverage of stroke care.

2. A quantitative analysis of linked Hospital Episode Statistics and Office of National Statistics mortality data from NHS Digital to examine the intersectional inequalities in mortality at 30 days and 1 year post-stroke, and a sequence data analysis to identify the inequalities in the care pathways 1-year post-stroke.

This data request is solely concerned with the second part of the project. SSNAP data will be sought separately through SSNAP directly.

The following NHS England Data will be accessed:

> Hospital Episode Statistics Admitted Patient Care (HES APC)

> Hospital Episode Statistics Outpatients (HES OP)

> Civil Registration Mortality

These datasets are required to create 1-year post stroke pathways for patients using the number and length of each hospital admission, as well as the type of admission to enable clustering analysis and identify the most common type of patterns. For example, this will allow the researchers to distinguish whether some patients are more likely to have less hospital admissions within the 1st year post stroke or whether some are more likely to have more hospital admission, as well as the severity of these based on type or whether some pathways result in death more often. Analysis will then be conducted on the identified pathways to analyse whether intersectional inequalities make a patient more likely to be on a 1-year post-stroke pathway with more admission of a higher type when compared to others.

Sensitive derived date of death is required to perform the sequence analysis part of the analysis, creating sequences and timelines from first hospital admission to death within the 1st year after stroke. Once these sequences have been established and the four most common timelines identified, the effect of belonging to an intersectional identity can then be examined as well.

The level of the Data will be:

> Pseudonymised

Sensitive patient characteristics such as gender will also be requested. This data will be used for intersectional analysis to analyse the social context of individuals.

LSOA is also required from HES APC for the following reasons:

- To calculate distances from the LSOA to their respective place of care.

- To place the LSOA within an aggregated group of rural/urban origin or coastal/non-coastal origin based on ONS classification available classification for LSOA's.

The importance of accounting for coastal and rural communities and the lack of accessibility for these patients has been strongly echoed by both the NHS Trust and patient voice-oriented charities such as Healthwatch Essex. Furthermore, the lack of research available in these areas makes the inclusion of such data all the timelier and more important.

The Data will be minimised as follows:

> Limited to Data between 2020/21 - latest available

> For HES, limited to a cohort of individuals identified by NHS England who have a stroke event or an event associated with stroke - diabetes, atrial fibrillation and hypertension. This level of minimisation is not feasible for the deaths dataset.

The University of Essex is the research sponsor and the controller as the organisation responsible for ensuring that the Data will only be processed for the purpose 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)(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.

Stroke specialists, including stroke nurses, rehabilitation staff, and the stroke lead from Colchester Hospital have communicated that this research is both timely and needed for both the local area and England overall. They have highlighted that there is very little research on inequalities in stroke care and outcomes, despite their experiences showing that inequalities are present and that they negatively affect the patient’s care. This processing is in the public interest because this project aims to provide evidence for the reduction of inequalities in stroke care and outcomes.

The funding is provided by East Suffolk and North Essex Foundation Trust. The funding is specifically for the PhD project described.

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

The funder, East Suffolk and North Essex Foundation Trust, has provided advice on the objectives and methodology to ensure that the research is accurate, timely and is in line with the needs outlined by stroke care providers. Feedback has also been provided on each indicator selected by the stroke leads at Colchester Hospital.

Data will be accessed by:

> Substantive employees of the University of Essex.

> A PhD student enrolled with the University of Essex. The individual has completed mandatory data protection and confidentiality training and is subject to the University of Essex’s policies on data protection and confidentiality. The individual accessing the data will do so under the supervision of a substantive employee of the University of Essex. the University of Essex would be responsible and liable for any work carried out by the individual. The PhD student would only work on the data for the purposes described in this Data Sharing Agreement (DSA).

Patient involvement is being sought through the involvement of Healthwatch Essex who act as a representative for patient voices in the local community and run monthly sessions with patients specifically designed to involve them in research.

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

NHS England will grant access to the Data via the Secure Data Environment (SDE). The SDE is a secure data and research analysis platform. It allows approved researchers with approved projects access to pseudonymised data and industry-leading analytics tools.

NHS England will provide access to the relevant records from the HES and Deaths datasets to the University of Essex via NHS England Secure Data Environment (SDE). 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.

SDE users can request exportation of aggregated analysis results (suppressed and summarised according to the NHSE SDE Disclosure Control rules) subject to review and approval by the NHS England SDE Output Checking team. The SDE Output Checking team will ensure that no output contains information which could be used either on its own or in conjunction with other data to breach an individual's privacy.

Users must identify themselves via a multi-factor authentication mechanism and are only able to access the datasets detailed within this DSA. The access and use of the system is fully auditable, and all users must comply with the use of the Data as specified in this DSA.

Users are only authorised to access the Data specified in this DSA and can utilise a variety of analytical tools available within the SDE platform. Users are not permitted to export record-level data from the SDE.

The Data will be stored on servers at NHS England.

The Data will be 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).

Remote processing will be from secure locations within England. The data will not leave England at any time.

Access is restricted to employees of the University of Essex and PhD students enrolled with the University of Essex who have authorisation from the PhD supervisor, a Professor of Global Public Health.

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

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

Researchers from, or PhD students enrolled with, the University of Essex will process the Data for the purposes described above.

The expected outputs of the processing will be:

> Submissions to peer reviewed journals: two submissions are expected - one on the intersectional inequalities in stroke mortality and one on the 1-year stroke pathways created using sequence analysis on hospital admission trends.

> Presentations at stroke-oriented conferences such as the UK Stroke Forum Conference, International Stroke Conference and UK Stroke Conference. Conferences oriented on the use of the type of methodology and sequence analysis used will also be sought out.

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:

> Journals

> Conferences

> Findings will be disseminated with the help of the NHS Trust via their network

> Findings will be disseminated within the university through participation in the annual Student-Staff Conference and the summer methodology in health-focused seminars within the Institute for Public Health and Well-Being

> Findings will be disseminated to stroke patients directly as well through a partnership with Healthwatch Essex and local stroke charities in North Essex.

The project expects to produce the above outputs within 1 year following data access.

Intersectional literature has shown that outcomes can vary for between intersectional identities in a very different way than they vary between one single inequality such as gender or age. For example, outcomes can be very different for an old-black-female patient living in a low-income area in a rural/coastal town versus the outcome for a young-white-male living in a high-income area in an urban/non-coastal town.

The findings of this research are expected to identify the intersectional inequalities in stroke care and outcomes and provide evidence for policymakers to use in improving the stroke care delivery system. This project's main objectives for impact are:

1. To ensure intersectional inequalities are reflected in stroke policies and guidelines

2. To provide evidence of the geographical inequalities in stroke care and outcomes

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.

- 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).

The University of Essex expect policies resulting from these findings to create care that is more inclusive, ensuring that nobody gets left behind and everybody receives the high-quality care that they need. By improving care, this project ultimately aims to improve stroke outcomes and reduce mortality as a result of stroke, as well as provide a model for the identification of intersectional inequalities to be used in the study of other diseases.

To ensure this impact is achieved, the project's partnerships with the local NHS Trust (ESNEFT), Healthwatch Essex, and local stroke charities will be crucial. By engaging both stroke care providers, stroke patients and the local community both in creating this research project and disseminating it, the University of Essex aim to raise awareness of the intersectional inequalities in stroke and provide timely evidence for improvement.

Not stated in the register.