Work

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

Year: 2025

Type: article

Abstract: 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. 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. Forming 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. The James Lind Alliance is an organisation that seeks to find out what people with lived experience see as the priorities for research about different topics. There is a set way of doing this, which involves two online surveys and a workshop to decide which of the questions identified are the most important for research to address. In 2025 Marie Curie, in partnership with the James Lind Alliance and other organisations published a refresh of the Palliative and End of Life Care Priority Setting Partnership first published in 2015. A Lived Experience Group was set up to enable people affected by serious life limiting illness to shape all aspects of the project. This paper provides reflections from members of the Lived Experience Group and the Steering Group for the project on the process and impact of working in this way. Working with the Lived Experience Group brought insights which influenced and benefited the project, in several ways, from shaping the scope of the project, tools for data collection, methods of analysis and dissemination of the findings. The process of establishing and engaging with the group throughout the project was resource intensive but helped to ensure the project met its aims of identifying priorities for future palliative and end of life care research that aligned with the priorities of people with lived experience. Based on our collective experiences, we provide considerations for other projects looking to work in a consistent and impactful way with people affected by serious life limiting illness.

Source: Research Involvement and Engagement

DOI: 10.1186/s40900-025-00774-4