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

Abstract: What do we want to improve?_x000D_ The South West of England (Cornwall, Devon, Dorset) has specific challenges, with high levels of poverty and a rapidly aging population in its coastal and rural communities. South West communities have exciting ideas and projects to enable low-income and other communities to support each other at the end of life, but to date have not benefitted from local palliative care research or evaluations of their projects._x000D_ _x000D_ Who is our proposed South West partnership?_x000D_ We will create a strong partnership with the potential to conduct high quality research reflecting local needs. The evidence it produces will be important for other rural and coastal communities with low-income populations. _x000D_ The lead is from King’s College London with experience to share in palliative care research. The co-lead is from Exeter University and focuses on health research in low-income communities. The partnership includes Plymouth University, the voluntary health sector (all 7 regional hospices, Marie Curie’s night sitting service) the voluntary sector (2 Community Development Partnership Trusts, HealthWatch) local government (health and social care) and National Institute for Health Research networks (Clinical Research Network, Research Design Service, Applied Research Centre) plus the local Clinical Trials Unit. _x000D_ _x000D_ What we will do_x000D_ Our overall aim is to build a new palliative care research partnership that identifies and responds to community support needs for underserved rural and coastal patients and families in the South West, particularly focusing on low-income communities. Our shared goal is to develop capacity to participate in existing research and to successfully deliver new research grants beyond this development phase. We all met for the first time to plan our partnership development activities._x000D_ First, we will review the existing research evidence on how to enable communities to support the dying. _x000D_ Second, our partnership has identified our needs in research skills and accessing existing research resources and will deliver a co-designed programme of learning activities. _x000D_ Third, hospices and community development trusts in our partnership will grow a permanent community engagement and involvement network. _x000D_ Fourth, partnership members will lead consultations to find out what underserved communities need to support dying well._x000D_ Fifth, we will come together to review the literature findings and what local communities told us to decide what our questions should be for new research applications._x000D_ Sixth, we will plan the best way to continue this partnership beyond this development phase._x000D_ _x000D_ What difference will this partnership make? _x000D_ We plan that: clinical services will become “research active” by recruiting patients and families into existing national and new local research. Patients, families and communities will be supported to develop and participate in research. Communities will share and develop expertise in supporting patients and families with palliative care needs. University partners will develop palliative care research skills. Together we will develop new bids for a range of potential funders. Partners will better use existing regional research support resources._x000D_ _x000D_ Community engagement _x000D_ This summary was prepared with PPI input. Nominated PPI members (one from each hospice and Community Development Trust) will inform development, delivery and dissemination of this partnership.

Lay abstract: Background_x000D_ 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._x000D_ _x000D_ Aims and objectives_x000D_ 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._x000D_ _x000D_ Planned impact_x000D_ Our stakeholder goals are jointly agreed. _x000D_ Clinical services: mentored by clinical team to be “research active”; built capacity to participate in portfolio studies._x000D_ 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._x000D_ Academic partnership: King’s College London and Exeter University new academic palliative care partnership._x000D_ 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._x000D_ 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._x000D_ 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.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE