Multi-sectoral partnership building in the South West Peninsula: palliative and end-of-life care research in rural, coastal and low-income communities

Background

The South West Peninsula (Cornwall, Devon, Dorset) has the highest proportion of over 65’s (24.2%), highest projected population growth (15.1%), and 0% conurbation. The Chief Medical Officer identified coastal populations as having the worst health outcomes in England. The Peninsula is the only rural population in England with greater economic deprivation than urban areas.

Despite innovation among communities to provide support those with health and social care needs, there has not been research to evaluate palliative care interventions. The Peninsula is 5th lowest recruiter to palliative care studies among the 15 Clinical Research Networks. Aims and objectives

Our proposed partnership spans academia, all 7 local hospices, Clinical Research Network, Research Design Service, Marie Curie, social services and voluntary community sectors to enable step-change to a sustained research-active regional partnership. We convened partners to jointly appraise research needs, and co-designed activities to enable the partnership to participate in existing, and lead new, palliative care research in rural and coastal populations with specific focus on low-income communities.

Objectives are to: i) conduct a scoping review of the literature on interventions to enable community members to support the dying; ii) deliver a capacity-building programme to generate research capabilities and enhance access to existing NIHR resources, including academic research methods applied to palliative care, accessing NIHR resources, and mentorship in being a research active clinical service; iii) co-create public and patient engagement and involvement capacity and structures in the region, with a team of 8 funded PPI members, a PPI co-ordinator and 2 local Community Development Trusts; iv) determine the resources and needs for communities to support dying well through community engagement events and focus groups led by community partners; v) integrate findings from objectives i and iv with regional stakeholders developing a conceptual framework of optimal community support and to identify research questions for Stage 2 application; vi) establish a sustainable research network with infrastructure and governance for longer term design and delivery of palliative care research led from the Peninsula.

Planned impact Our stakeholder goals are jointly agreed.

Clinical services: mentored by clinical team to be “research active”; built capacity to participate in portfolio studies.

Scientific capacity: substantive research applications to NIHR call, at least one led by Peninsula; catalyse submissions to other funders; KCL mentor Exeter University staff (Wellcome Centre, CTU) in palliative care research methods for local leadership. Academic partnership: King’s College London and Exeter University new academic palliative care partnership.

Regional: new sustained regional partnership; members aware of and access NIHR local resources; novel framework on potential transformative engagement approaches between services and families in the community.

Patients, families, communities: meaningfully influence research activity; generate evidence on feasible and acceptable ways to create conditions for communities to be active partners supporting those with palliative care needs.

NIHR: improved utilisation of locally-allocated resources and improved equity of benefit by ensuring those with life-limiting illness can participate in, and benefit from, research.