Abstract
Background
The North East is one of the most disadvantaged areas of England with end-of-life care needs shaped by high levels of disability, physical and mental ill health. This programme of work aimed to set the foundation for the development of a palliative and end-of-life care research community, equipped to meet local and national challenges.
Objectives
Develop a self-sustaining research culture in North East palliative and end-of-life care.
Build research collaborations around older age, frailty, multiple long-term conditions and inequalities and submit at least one research proposal.
Convene a diverse patient and public advisory group.
Methods and findings
To establish cross-institutional collaborations, we worked with patient and public partners and key stakeholders from local National Health Service trusts, hospices, social care, our National Institute for Health and Care Research infrastructure (Applied Research Collaboration North East and North Cumbria, Policy Research Unit Older People and Frailty, National Institute for Health and Care Research Innovation Observatory, Comprehensive Research Network, and Research Design Service). A series of events were hosted to foster a research culture, including establishing a monthly seminar programme, research sandpits, bespoke research training and dissemination events. A diverse community of patient and public involvement partners was established to support and shape the developing research. Multiple project and two fellowship applications were supported by the partnership. A qualitative study identified issues pertinent to local access to data that could support research.
Conclusions
This work has been a catalyst for palliative and end-of-life care research and practice collaborations to develop. Funding success and ongoing research and training events should provide a platform for sustained research development in this area.
Funding
This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR135278.