Care of people at the end of their lives in the rural and coastal communities of the South West Peninsula of England: A participatory realist evaluation

​​The Data will be used for the research project “Care of people at the end of their lives in the rural and coastal communities of the South West Peninsula of England: A participatory realist evaluation” (EoL Care Study).

​The wider project is split into 4 work packages. The aim of the workstream requesting accessing to NHS England data is the following:

- To use linked HES and mortality data to understand geographical variation in end-of-life care and place-of-death outcomes, particularly whether outcomes differ for people living in rural and/or coastal localities and whether distance from relevant health and care services influences patterns of care.

​- To map and understand inequalities in EoL care in coastal and rural communities.

​- To understand the conditions that generate good care at the EoL and factors driving inequalities. Explore access and outcomes associated with different pathways of service provision for people at the EoL.

- To develop a platform of work to contribute to the local, national, and international evidence base on EoL, including how strategic intelligence can be better deployed to support sustainability (future commissioning) .

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 Civil Registrations of Death, HES and ECDS datasets to the University of Plymouth 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.

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.

NHS England will provide access to relevant records from the Civil Registrations of Death, ECDS, HES APC and HES OP datasets via the NHS Secure Data Environment. 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.

The Data will be stored on servers at NHS England’s Secure Data Environment (SDE).

The Data will be accessed onsite at the premises of University of Plymouth, and, 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).

The Data will be combined with publicly available data including LSOA-level reference data and publicly available geographic datasets, such as locations of GPs, hospitals, hospices and other relevant services with OS grid references, to be imported as reference data to assess rural/coastal status and proximity to services.

The expected outputs of the processing will be:

• A final report of findings to NIHR, expected in January 2028.

• Submissions to peer-reviewed open access journal articles will be submitted (circa Oct 27 – Jan 28) to world-leading journals (e.g. Palliative Medicine, BMJ Supportive and Palliative Care, HSJ).

• Presentations at four webinars, with three taking place through the duration of the study, and a final one taking place when the study ends.

• Presentations at two European Association for Palliative Care conferences and the Marie Curie Palliative Care Conference.

• Publication of dashboards of ongoing insights from the study for use by the use of ICBs and others directly responsible for the development and implementation of EoL policy.

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

• Webinars open to local stakeholders and audiences including participants from across the UK.

• Lay summaries about the progress and findings of the research on the project website

• Direct bilateral engagement locally and nationally with individual ICBs to share findings.

• Public promotion of the research via online project stakeholder events (planned for March 26, Sept 26, March 27 and Sept 27) and professional stakeholder groups (planned for Mrach, June, Sept and Dec 26 and March and June 27). There will be final end-of-project face-to-face stakeholder events in Plymouth and the Policy Lab in London (circa January 2028).

As a whole, this study is concerned with investigating the inequalities in EoL care in rural and coastal areas that have been observed and developing strategies for how health and care services, the voluntary sector and communities can better support access to high quality care at the end of life? To that end it will (a) develop an overarching programme theory regarding the delivery of EoL care in rural and coastal communities and (b) provide system-level actionable insights for ICBs and other policy actors, both locally and nationally.

Integral to this focus on what works and what doesn’t in the delivery of EoL care to rural and coastal populations, the study will develop methods for analysing and interpreting both locally and nationally collected routine data. With respect to our proposed used of linked HES-ONS mortality data, this is to inform both an evaluation of the extent and nature of coastal/ rural inequalities in the provision of EoL care (particularly regarding place-of-death outcomes) and to better understand how such data can be used by relevant policy actors to assess equity in the provision of EoL care.

Project benefits are thus evidential, methodological and policy focussed. Programme theories and strategic intelligence are intended to inform and influence strategy and system (ICB) impact and contribute to wider policy interventions to address geographical inequalities in EoL care. Similarly, the platform of work undertaken will contribute to the local, national, and international evidence base on EoL care, including how strategic intelligence can be better deployed to support future commissioning.

In addition to better understanding current inequalities in the provision of EoL care and place-of-death outcomes, our proposed novel use of linked HES-ONS mortality data aims to provide a template for the use of such data to monitor inequalities by analysts supporting the development of local and national policy. It will, in brief, provide evidential and methodological insights necessary to improve the provision of services to populations living in coastal and rural areas. It will also provide a sound basis upon which to assess the generalisability and transferability of findings flowing from the wider project’s more detailed investigation into the provision of EoL care in the South West Peninsula.

Outputs, particularly Policy Lab Outputs, evidence dashboards, policy briefings and policy pamphlets will focus on prompting and supporting both ICB- and national-level policy better address the needs of rural and coastal communities. Engaging a wide range of stakeholders at all stages of the project, as detailed in the attached Research Protocol, will help ensure that a wide audience will be aware our of research and receptive to our findings as they emerge over the course of 2026 and 2027.

Yielded Benefits is not a requirement for new applications.