Developing research collaborations and building capacity in palliative and end-of-life care in the north west coast of England : the PalCaRe-NWC partnership

Article

DUNLEAVY, Lesley | BOARD, Ruth | COYLE, Seamus | DICKMAN, Andrew | ELLERSHAW, John E. | GADOUD, Amy | HALVORSEN, Jaime | HULBERT-WILLIAMS, Nick | LIGHTBODY, Liz | MASON, Stephen | CALLISTUS NWOSU, Amara | PARTRIDGE, Andrea | PAYNE, Sheila | PRESTON, Nancy | SWASH, Brooke | TAYLOR, Vanessa | WALSHE, Catherine

ACKGROUND: The North West Coast area of England (Lancashire, Merseyside, Cheshire and South Cumbria) has high palliative care need (third highest prevalence in England) and historically low recorded National Institute for Health and Care Research research activity (second lowest research recruitment rate in England). To stimulate research activity, a new research partnership was formed to support and encourage palliative care research, funded by the National Institute for Health and Care Research from January 2022 until June 2023. OBJECTIVES: To develop a sustainable palliative care research partnership infrastructure across the North West Coast. 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. To build capacity in palliative and end-of-life care research through the mentorship of emerging research leaders and share expertise across organisations. To facilitate the development of high-quality research grant applications. ACTIVITIES: Phased activities were planned and actioned throughout the funded period to develop and embed an active palliative care research partnership across the region. These included: a survey and working groups to rapidly identify current local barriers to research and their sustainable solutions; individual and group support activities to build research capabilities and capacity; development and submission of high-quality, clinically relevant research proposals to the National Institute for Health and Care Research and other funders. RESULTS: Survey participants (n = 293) were mainly from clinical settings (71%), with 45% being nurses. While around three-quarters of participants were not research active, most wanted to increase their involvement. Key barriers identified from both the survey and working groups (n = 20 professional participants) included: lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Based on these findings, the partnership is working with national stakeholders to develop user-friendly resources to facilitate hospice-based research. Three action learning sets, that met several times (n = 15 staff), and two networking events (n = 78 participants) took place to facilitate collaboration and research capacity building. Eleven research grant applications totalling £5,435,967 were submitted as a direct result of partnership activities between January 2022 and June 2023. LIMITATIONS: Survey and working group findings and resulting activities represent the views and needs of staff within a particular United Kingdom geography and had limited public representation. CONCLUSIONS: Funding to support partnership work has been demonstrated to be effective in pump-priming research activities, leading to successful research grant submissions and building research capacity. However, consideration is needed about how to maintain partnership work, embed in local organisations and further develop work across non-traditional stakeholders such as hospices and social care providers if ongoing funding is unavailable. FUTURE WORK: North West Coast Clinical Research Network has provided short-term funding (July 2023-March 2024) to enable and sustain the expansion of Palliative Care Research Partnership North West Coast. FUNDING: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135334.

http://dx.doi.org/10.3310/AWLT2995

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