Meaningful inclusion of consumers in research and service delivery

Although participatory methods have become increasingly popular, people with lived experience of mental illness and homelessness have been historically excluded from service planning and research. To better plan for meaningful inclusion of consumers, this study examines lessons learned from the People with Lived Experience Caucus in the Toronto Site of the At Home/Chez Soi Research Demonstration Project on Homelessness and Mental Health.

The inclusion of the People with Lived Experience Caucus was evaluated using qualitative methods and multiple data sources, including review of 42 documents, 11 individual interviews, and three focus groups. Caucus members were included in the study team. Transcripts were analyzed using grounded theory methodology.

Findings revealed a complex story of Caucus engagement: Facing time constraints and given little direction, the Caucus developed through a tumultuous process related to both internal and external barriers to meaningful inclusion. Despite the challenges, the Caucus contributed meaningfully to various aspects of the research demonstration project.

It is possible to successfully integrate psychiatric consumers with experience of homelessness in many aspects of research and service planning. Suggestions for future initiatives hoping to engage consumers include: early involvement, purposeful selection of members, clear communication of roles and responsibilities, a consumer coordinating group, and space for critical dialog throughout the process. Lessons learned can inform the inclusion of consumers in similar endeavors in other jurisdictions.