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

Abstract

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.

Keywords

• Patient and public involvement
• Lived experience
• Substance use
• Homelessness