Building an understanding of Ethnic minority people’s Service Use Relating to Emergency care for injuries (BE SURE) (NIHR132744): Work Package 2

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

Building an understanding of Ethnic minority people’s Service Use Relating to Emergency care for injuries (BE SURE)

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

BE SURE is a stand-alone research project that will investigate disparities in how ethnic minorities present to emergency ambulance services and Emergency Departments (ED) with injuries, the care they receive and what happens to them, compared to the White British population.

BE SURE comprises the following four Work Packages (WPs).

• WP1: Scoping review of available evidence on injury presentation by people from ethnic minority groups; emergency service response (999 ambulance service and ED) and health outcomes.

• WP2: Routine linked data epidemiology of injury presentation, care delivery and outcomes.

• WP3: Questionnaire study examining ethnic minority and white British backgrounds who have presented with injury.

• WP4: Qualitative interviews and focus groups with WP3 questionnaire respondents.

This Agreement concerns Work Package 2 (WP2) only.

The aim of this proposal is to gather and examine data for WP2 within the BE SURE study. The objectives of the data will be to:

• Describe the quality (completeness, consistency) of ethnicity data in routine emergency care datasets and identify gaps

• Compare between people in ethnic minorities and white British people: injury type, severity, care delivered, outcomes, beliefs and experiences when they make contact with emergency services for injuries

WP2 Epidemiology of injury presentation, care delivery and outcomes (data request):

Swansea University will compare type and severity of injury; care delivered and 6-month outcomes between ethnic minority and white British people across the study sites using routine National Health Service (NHS) data (2018 –2023).

BE SURE's outcomes require data related to diagnoses, disposition from ED, length of stay at index episode in hospital, treatments received and discharge code, ICU admissions and length of stay, further ED attendances and emergency admissions, and death.

The following NHS England Data will be accessed:

> Hospital Episode Statistics (HES)

- Admitted Patient Care (APC) – necessary because this dataset will facilitate comparisons of admission rates, length of stay, and interventions for white British and ethnic minority patients.

- Accident & Emergency (A&E) and Emergency Care Data Set (ECDS) – necessary because this dataset will facilitate comparisons including diagnoses, treatments, and dispositions, enabling analysis of differences in ED care patterns and outcomes between ethnic minority and White British patients.

- Critical Care (CC) – necessary because this dataset will provide specific information on critical care episodes, allowing comparison of ICU utilisation and outcomes across white British and ethnic minorities.

> Civil Registration Mortality – necessary because this dataset will provide accurate death data, including cause of death, allowing for analysis of injury-related mortality and identification of potential safety incidents (e.g., deaths within 72 hours of discharge) across ethnic groups. Cause of death will indicate whether the death is injury-related or not for subgroup analyses.

The level of the Data will be:

> Pseudonymised

The Data will be minimised as follows:

> Limited to a study cohort identified by emergency ambulance services: ~550,000 patients from participating ambulance services with ambulance dispatch data from 01/08/2016 - 31/07/2021

> Limited to data between 01/08/2017 - 31/07/2023. For each individual, data will be minimised to a follow-up period of six months after an initial incident for each patient. Start and end dates for this period per individual is to be sent to NHS England upon cohort submission.

> Limited to specific emergency department sites within England - the cohort will be minimised in this way prior to cohort submission.

> Following data receipt, Swansea University will further minimise the data by diagnosis code.

Sensitive ethnicity data is required to allow Swansea University to describe the quality (completeness, consistency) of ethnicity data in routine emergency care datasets and identify gaps.

Swansea University 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.

This processing is in the public interest because it aims to identify and analyse disparities in care provision and health outcomes between white British and ethnic minority patients and to address critical gaps in ethnicity data quality and completeness within the NHS. The anticipated outcomes of this study are expected to provide valuable insights that can shape better practices and improve the accessibility of emergency care for ethnic minorities throughout the UK. This aligns with the public interest goal of reducing health inequalities and ensuring equitable access to healthcare services for all members of society, regardless of their ethnic background.

The funding is provided by the National Institute for Health Research (NIHR). The funding is specifically for the study described. Funding is in place until March 2025 with plans to extend funding.

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

South East Coast Ambulance Service NHS Foundation Trust, Yorkshire Ambulance Service NHS Trust, East Midlands Ambulance Service, Sheffield Teaching Hospitals NHS Foundation Trust, Surry and Sussex Healthcare NHS Trust, University Hospitals of Leicester NHS Trust and Nottingham University Hospitals NHS Trust are responsible for sending the cohort identifiers to NHS England for cohort linkage purposes. These organisations have no access to the NHS England Data.

A BE SURE research management group is in place, from which, two members have been involved from an early point in the development of BE SURE. They actively contributed to developing both the Stage One and Stage Two applications for funding, participating in discussions to agree research aims and methods. They have used their previous experience of being involved in research to bring a rich understanding of the issues relating to research concerning ethnic minority groups.

Two further Patient and Public Involvement (PPI) members have also been recruited to sit on the Study Steering Committee. Ten peer researchers from ethnic minorities have been recruited within each of the three study regions (South East England, East Midlands, Yorkshire and the Humber).

South East Coast Ambulance Service NHS Foundation Trust, Yorkshire Ambulance Service NHS Trust and East Midlands Ambulance Service will transfer data to NHS England. The data will consist of identifying details (specifically, NHS Number, Forename, Surname, Date of Birth, Postcode, Gender and a unique person ID) for the cohort to be linked with NHS England data.

NHS England will provide the relevant records from the HES and deaths datasets to the Secure Anonymised Information Linkage (SAIL) databank at Swansea University. 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 SAIL databank at Swansea University.

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

Access is restricted to employees or agents of Swansea University 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 ambulance dispatch data from East Midlands, South East Cost and Yorkshire Ambulance Services; and A&E data from Leicester Royal Infirmary, East Surrey Hospital, and Northern General Hospital.

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

Researchers from Swansea University will analyse the Data for the purposes described above.

The expected outputs of the processing will be:

> A final report of findings to NIHR at the end of the study

> Submissions to peer reviewed journals such as the British Medical Journal (BMJ) Open; 6 publications are expected

> Abstracts, posters and presentations at appropriate conferences, such as the Health Services Research UK conference, on an ad-hoc basis

> Executive summary to disseminate through the Wales Centre for Primary and Emergency (including Unscheduled) Care Research network

> Non-technical summaries and presentations are hoped to be distributed to East Midlands Ambulance, South-East Coast Ambulance Service, Scottish Ambulance service, Yorkshire Ambulance Service, Leicester Royal infirmary NHS Trust, East Surrey Hospital, Redhill, Surrey and Sussex NHS Trust, Royal Infirmary Edinburgh, NHS Lothian, Northern General Hospital & Sheffield Teaching Hospitals NHS Foundation Trust.

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

> Presentations

> Press/media engagement, such as written press coverage, online media, and social networking. Media/networking engagements hope to be via PRIME Centre Wales, the National Ambulance Research Steering Group (http://narsg.uk/), the 999 EMS Research Forum, Health Services Research UK and similar online/face-to-face events/conferences, in addition to any others proposed by members of BE SURE’s Research Management Group/Study Steering Group and public involvement members.

> Reports aimed at NIHR

Outputs are expected to be produced by the end of 2025.

BE SURE aims to understand disparities in how ethnic minorities present to emergency ambulance services and Emergency Departments (ED) with injuries, the care they receive and what happens to them, compared to the White British population, to inform policy to address differences in care, morbidity and mortality. It hopes to synthesise objective evidence to help policy makers and care providers to develop and implement interventions to promote accessibility of services for injury in ethnic minority populations, enable ambulance service and EDs to improve care and outcomes for people in these populations with injuries, and inform injury surveillance resources where they exist, to include ethnicity dimension in their reporting of injury.

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 obesity and diabetes.

> 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.

Dissemination seeks to maximise stakeholder interest and understanding of the study and its outputs to maximise impact on ambulance service policy and practice. It aims to build on the research management groups profile and reputation with previous studies focused on improving the quality of prehospital care. The research management group has and intends to continue to work with public contributors and co-applicants to develop a study communication plan. This plan aims to include an assessment of stakeholder needs and hopes to set out communication activities and milestones. It is anticipated to look to include engagement with patient and professional groups, NHS managers, commissioners, and policy makers. It is planned that plain English summaries will be produced where appropriate.

The target audience for dissemination includes policy makers, care-commissioning bodes, ambulance service providers and the general public. The research management group hopes to use strong existing links with ambulance services directly, and through national bodies such as the National Ambulance Research Steering Group (NARGS), National Ambulance Services Clinical Quality Group, the Association of Ambulance Chief Executives (AACE) and National Ambulance Services Medical Directors. Swansea University will disseminate key findings to front-line ambulance service staff and ED emergency care staff via internal ambulance/ED boards, service briefings and bulletins, and practitioner/professional publications.

Yielded Benefits is not a requirement for new applications.