“ PPI? That sounds like Payment Protection Insurance”: Reflections and learning from a substance use and homelessness study Experts by Experience group

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.

Plain English Summary

This article describes the activities and lessons learned from the involvement of an Experts by Experience group in a National Institute for Health Research (NIHR) study. The study was about peer support for people experiencing homelessness and substance use challenges. The Experts by Experience group was made up of research team members, and a range of individuals from across the UK who had experienced homelessness and/or drug use and/or alcohol use, and who were recruited from a range of services who currently worked with people experiencing homelessness and/or substance use. The purpose of the group was to ‘sense check’ the study throughout. The group was a requirement from NIHR who funded the project. These groups are usually known as PPI groups (Patient and Public Involvement), but members of the group felt that ‘Experts by Experience’ was a more accurate term to describe the membership. The lived/living experience members’ knowledge of the topic, and experience of using the types of services and interventions involved in the study, helped to guide the study team. Study team members facilitated Experts by Experience group meetings, but everyone was equal. The group gelled and worked well together to oversee the study. This article describes the benefits of having Experts by Experience members as part of the project from the inception through to the end. Ensuring the group had autonomy enhanced the study and was a powerful and empowering experience for the lived/living experience members.