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

ABSTRACT:

Background

In 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-s

SUBMITTER: Bush J 

PROVIDER: S-EPMC12613399 | biostudies-literature | 2025 Nov

REPOSITORIES: biostudies-literature