Foster R, Carver H, Wallace J, Dunedin A, Burridge S, Foley P, Pauly B & Parkes T (2021) "PPI? That sounds like Payment Protection Insurance": Reflections and learning from a substance use and homelessness study Experts by Experience group. Research Involvement and Engagement, 7 (1), Art. No.: 82. https://doi.org/10.1186/s40900-021-00324-8
Background: Patient and Public Involvement in research is important for citizenship, accountability and transparency, and has the practical benefit of helping to ensure its quality and applicability. Involving members of the public in research is becoming increasingly commonplace, in the UK and internationally. It is essential that public involvement is inclusive of individuals and their diverse life experiences, including challenging experiences that may be associated with stigma and social exclusion. The involvement of people with lived/living experience of substance use and homelessness in research is increasing in response to increased recognition of the importance of inclusion and the benefits conferred to research.
Main body: In this commentary, we share our own experiences of being part of a Patient and Public Involvement group that was convened during a feasibility study of a peer-delivered harm reduction intervention. We are a diverse group but share experience of the field of substance use/homelessness, as people with lived/living experience, and as researchers and practitioners. We share our reflections and learning, as well as offer recommendations for researchers working in our field. Our group worked together to make a positive and deliberate contribution to the study. This did not happen by chance but required the development of mutual trust and respect, with each member having a commitment to support the group for its two-year duration.
Short conclusion: It is important for researchers to appreciate that meaningful Patient and Public Involvement is very valuable but requires a commitment from all involved. Regarding our field of substance use and homelessness specifically, it is essential that people with these experiences have opportunities to contribute to research and can do so in a meaningful way. People with lived/living experience are able to bring to life the rich tapestry of others’ experiences. However, the involvement must be neither tokenistic nor indifferent to the wider challenges common to these experiences.
patient and public involvement; lived experience; substance use; homelessness
This project was funded by the Health Technology Assessment Programme (project number 16/153/14) and is now published in full in the Health Technology Assessment online journal [volume 26, and issue number 14, February 2022) and available here https://www.journalslibrary.nihr.ac.uk/hta/WVVL4786#/abstract Further information on the project is available at: https://www.journalslibrary.nihr.ac.uk/programmes/hta/1615314/#/
This report presents independent research commissioned by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, MRC, CCF, NETSCC, the HTA programme or the Department of Health.
Research Involvement and Engagement: Volume 7, Issue 1