Reflections on the impact of the Lived Experience Group in the James Lind Alliance Palliative and End of Life Care Priority Setting Partnership Refresh.

backgroundIn 2025, Marie Curie and other partners launched the results of a refreshed Priority Setting Partnership with the James Lind Alliance, to identify priorities for palliative and end of life care research, based on the views of people affected by serious life limiting illness. To our knowledge, this was the first Priority Setting Partnership to have a dedicated group of people with lived experience as equal partners in the research. This paper provides reflections for other researchers considering embedding a Lived Experience Group into future Priority Setting Partnerships and provides evidence of the positive impact that this can bring. MAIN TEXT: Data on involvement impact and experience was collected using the Public Involvement in Research Toolkit (PIRIT), semi-structured interviews with Lived Experience Group and Steering Group members, and a short online survey for Lived Experience Group participants. The PIRIT tracker recorded 66 impacts throughout the project, which included shaping the project, refining data collection tools, influencing language, encouraging diverse responses, and aiding dissemination.

conclusionsForming a Lived Experience Group to support the refresh of the Palliative and End of Life Care Priority Setting Partnership ensured that people with lived experience of dying, death and bereavement had a clear route for involvement in all stages of the project. This regular and consistent engagement required considerable resource but shaped the project in several ways and ultimately improved its quality.