Developing palliative and end-of-life care research partnerships and capacity in the North West Coast of England

BACKGROUND We want to build a broad palliative care research partnership across the North West Coast region between Universities, providers, patients and the public, and existing infrastructure such as the CRN and ARC. This will enable the delivery of high quality, practice relevant grant applications that focus on needs, especially those of our underserved populations.

The North West Coast has high palliative care need (third highest prevalence in England) and historically low recorded NIHR research activity (second lowest research recruitment rate in England). There are known challenges to conducting research in palliative care such as identification and recruitment of populations, but also challenges of poorly established research infrastructure.

Having an active, confident, sustainable palliative care research network across North West Coast will spotlight good research practice, build research capacity, and combat barriers to research. OBJECTIVES

i)To develop a sustainable palliative care partnership infrastructure across NWC, embedded within existing organisations such as the CRN and ARC, involving strong PPI, as a focus for palliative and end-of-life care research in the region.

ii)To work with palliative care providers, patients and the public, and research staff to further understand local barriers and facilitators to palliative and end-of-life care research, and develop and implement solutions to these barriers.

iii)To build clinical capacity in palliative and end-of-life care research through the mentorship of emerging research leaders and share academic expertise across organisations.

iv)To facilitate the development of high-quality research grant applications that address important clinical research questions that meet the needs of the NWC population (and beyond) focused on the NIHR palliative and end-of-life care calls (NIHR PHR, EME, HS&DR and HTA) in 2022. PARTNERSHIP PLAN

a)DEVELOP AND EMBED AN ACTIVE PALLIATIVE CARE PARTNERSHIP NETWORK ACROSS NORTH WEST COAST (to meet objective i) Activities to embed this will be actioned throughout the phased activities below.

b)PHASE ONE (0-6 months): RAPID IDENTIFICATION OF CURRENT LOCAL BARRIERS TO RESEARCH AND THEIR SUSTAINABLE SOLUTIONS (to meet objective ii) This will include an online survey and working groups (with providers, research staff, and the public) using nominal group techniques to facilitate a consensus on barriers and solutions to research across NWC.

c)PHASE TWO A (7-12 months). PERSONAL MENTORSHIP AND SUPPORT TO CO-DESIGN AND PREPARE RESEARCH GRANT APPLICATIONS (to meet objective iii and iv). This will include peer support and action learning sets, 1:1 mentorship and the buy out of time for emerging research leaders.

d)PHASE TWO B (7-18 months). IMPLEMENT IDENTIFIED SOLUTIONS TO ENABLING BETTER PALLIATIVE AND END-OF-LIFE CARE RESEARCH ACROSS NORTH WEST COAST (to meet objectives ii and iv). This will draw from phase one, but may include recruitment training, work on enabling research governance, and further developing our PPI networks.

e)PHASE THREE (7-12 months) DEVELOPING AND SUBMITTING HIGH QUALITY CLINICALLY RELEVANT RESEARCH PROPOSALS (to meet objective iv)

The outputs of this work will include; high quality applications to forthcoming palliative care calls; a sustainable infrastructure to facilitate excellent research; greater capacity to engage in palliative and end-of-life care research; and developing communities of practice.