Background Research partnerships between public advisors and researchers increase the value of healthcare research and improve implementation (Price, Clarke, Staniszewska, et al. Patient Educ Couns. 2022;105(4):1041–1047; Curry, Roberts, Smith, et al. Res Involv Engagem. 2022;8:66; Saini, Hassan, Morasae, et al. Res Involv Engagem. 2021;7: 49). A Public and Community Involvement and Engagement (PCIE) group was established at our hospice following a NIHR Applied Research Collaboration (ARC) Individual Development Award.
Aims To describe the establishment of a hospice PCIE group formed for a NIHR ARC-funded qualitative interview study and the group’s impact on the hospice’s research.
Methods The hospice advertised for PCIE members and reached out to local community organisations. Best practice was identified through guidance from the NIHR and national Patient and Public Involvement groups.
Results Founding members of the hospice PCIE group collaborated on developing member roles, research activities, terms of reference and meeting arrangements. To support the NIHR funded interview study, the group advised on topic guides and participant information, received training on qualitative data analysis and participated in analysing interview data. Members found working alongside the hospice research team important and insightful: “Just being involved in something so important and seeing how in-depth the interviews were … was a highlight.”
Two group members joined a national NIHR Partnership, providing feedback on research proposals and will be involved in subsequent grant applications. A clinician from a local NHS Trust presented and gained feedback for his PhD research project. The group continue to monitor wider research activity at the hospice, ensuring relevance to the community.
Conclusion An NIHR ARC award initiated the establishment of a hospice PCIE group. National standards supported development of structure and processes. PCIE funding was incorporated into the hospice research budget post-completion of the award. The PCIE group has increased hospice research capacity and is well placed to contribute to local and national research partnerships. It addresses national health priorities, bringing experiences of people in coastal communities (Whitty. Chief Medical Officer’s Annual Report 2021: Health in coastal communities. 2021) into palliative care research.
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