“PPI? That sounds like Payment Protection Insurance”: Reflections and learning from a substance use and homelessness study Experts by Experience group
Date
2021
Authors
Foster, Rebecca
Carver, Hannah
Wallace, Jason
Dunedin, Alex
Burridge, Stan
Foley, Philip
Pauly, Bernie
Parkes, Tessa
Journal Title
Journal ISSN
Volume Title
Publisher
Research Involvement and Engagement
Abstract
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.
Description
The authors would like to thank Dave Liddell, Study Co-Investigator and CEO of the Scottish Drug Forum, for kindly letting them use a meeting room in the SDF office free of charge. They would like to thank Dr. Mary Cobbett Ondiek for notetaking and providing other administrative support to the group and Jessica Greenhalgh for proof-reading. Finally, they would like to thank all those who are not named but who were part of, or supported, their Experts by Experience group.
Keywords
Patient and public involvement, Lived experience, Substance abuse, Homelessness
Citation
Foster, R., Carver, H., Wallace, J., Dunedin, J., 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(28), 1-10. https://doi.org/10.1186/s40900-021-00324-8