Title: The RE-EQUIPP Care Partnership: REducing inEQUalities through Integration of Primary and Palliative Care
Funder: Department of Health and Social Care

Abstract: Background_x000D_ Good palliative care is necessary to ensure that all people live as well as possible in the last year, months or days of their lives, but access to good palliative care is patchy and unequal. Thousands of people have died during the COVID-19 pandemic, many more at home, including in care homes, than in previous years, and inequalities in access to palliative care have unfortunately worsened during the pandemic. _x000D_ _x000D_ Primary care is the first place that people in the community go to for healthcare advice and treatment, ranging from disease prevention and treatment to rehabilitation and palliative care. Primary care includes community nurses, opticians, pharmacists and dentists. General practice is the medical speciality aligned to primary care. _x000D_ _x000D_ Primary care has a key role in providing palliative care to people in the community, alongside palliative care services, but this is often overlooked in policy. Research that includes primary and palliative care together is rare. This research partnership will address that gap in the research, bringing together world-leading expertise in palliative care research from the Cicely Saunders Institute, King’s College London, with primary care research in two other areas of England:(1) diverse, innercity Sheffield in South Yorkshire, and (2) the rural area of Sussex. _x000D_ _x000D_ Aims of the Partnership _x000D_ The aims of the partnership are to:_x000D_ 1. Build a successful and sustainable research and practice partnership between primary and palliative care in three places: the Cicely Saunders Institute, King’s College London, Sheffield and Sussex, _x000D_ 2. Lead and develop new research processes into how primary and palliative care services can work together (integrate) more effectively to address inequalities in palliative care,_x000D_ 3. Ensure considerable input from patient and public representatives through the course of the partnership, and _x000D_ 4. To construct nationally competitive research applications to develop new integrated models of palliative care for people in the community _x000D_ _x000D_ Partnership activities _x000D_ Over 12 months, the partnership will: _x000D_ 1. Improve equality of access to patient and public involvement (PPI) opportunities in palliative care research across the three areas by sharing learning and providing opportunities for people to take part in PPI in person and online, particularly for those who are not usually engaged,_x000D_ 2. Work together to understand how best to share the findings of research with professionals, local communities, policy makers and the government,_x000D_ 3. Identify key research questions, methods and research teams for a series of new research applications through workshops and active engagement with PPI communities, _x000D_ 4. Build a world-leading research team in primary and palliative care, through collaboration and mentorship._x000D_ _x000D_ How will this make a difference? _x000D_ This partnership has the vision and potential to develop world-leading, urgently needed research across primary and palliative care. The partnership will develop competitive research proposals with the aim of addressing longstanding inequalities in palliative care. The research will be grounded in patient need, perspectives and experience, highly relevant to policy makers, build research capacity and leadership, and will inspire future researchers in palliative care.

Lay abstract: Research question: How can innovative integrated whole-system models of cross-boundary primary and palliative care reduce inequalities in access to high quality palliative care? _x000D_ _x000D_ Background_x000D_ The number of people dying at home has increased by 39% during the COVID-19 pandemic. Inequalities in access to palliative care for people with multi-morbidity and those from areas of high socioeconomic deprivation and diversity, and rural areas, persist. Primary care (including general practitioners and community nurses) provide the majority of palliative and end-of-life care in the community and have a key role in addressing longstanding inequalities, alongside palliative care services. However primary care receives little attention in palliative care policy, and cross-boundary primary and palliative care research is rare. _x000D_ _x000D_ This new multiagency and multidisciplinary partnership will lead high quality, collaborative primary and palliative care research proposals to address the gap in the current evidence and inform effective integration of services. This is urgently needed as the number of people in need of end-of-life care in the community remains high and is projected to increase. _x000D_ _x000D_ Aims _x000D_ The partnership has three main aims:_x000D_ 1. Infrastructure and involvement: to build a successful, sustainable, multidisciplinary and multisector “hub and spoke” model partnership between primary and palliative care research, patient and public involvement, and practice across three diverse geographical regions. The Cicely Saunders Institute, King’s College London will be the “hub”, buddying with Sheffield and Sussex as “spokes”;_x000D_ 2. Integration: to provide new insights and understanding into when and how effective integration between primary and palliative care services occurs, and who benefits_x000D_ 3. Inequalities: to provide new insights and understanding into how the integration of community, primary and specialist palliative care services can reduce inequalities. _x000D_ _x000D_ Partnership plan _x000D_ The planned partnership activities are: _x000D_ 1. To build patient and public involvement (PPI) infrastructure and capacity across the three sites, with a workshop to provide new insights into effective PPI, enabling PPI in Sheffield and Sussex by infrastructure expansion of the Cicely Saunders Institute online PPI forum for palliative care forum, and a PPI “Dragon’s Den” event to identify priorities and inform future research,_x000D_ 2. To run virtual research and practice workshops, taking a realist approach to provide new insight and understanding into integration and inequalities in palliative and end-of-life care, _x000D_ 3. To build palliative care research leadership through bespoke mentorship, and _x000D_ 4. To improve the infrastructure for policy-relevant research through the development of mechanisms for knowledge exchange with local, regional and national policy makers, including those in commissioning, professional bodies, voluntary sector and government._x000D_ _x000D_ Timeline for delivery: 12 months_x000D_ _x000D_ Impact and dissemination _x000D_ Impact will be achieved through the formation of this new partnership, which will build multi-disciplinary palliative and primary care research capacity and capability across England. Findings from the workshops will be published. The main outputs from this partnership will be a series of nationally competitive grant applications for Part 2 of this NIHR Commissioned call.

Research activity codes: 7.4 RESOURCES AND INFRASTRUCTURE (DISEASE MANAGEMENT);8.5 RESOURCES AND INFRASTRUCTURE (HEALTH SERVICES)
Health categories: GENERIC HEALTH RELEVANCE