Engaging People With Lived Experience in Mental Health Service Co-design in Ontario, Canada

This research examined the process of engaging people with lived and living experience (PWLE) of mental health and substance use concerns in the co-design of a mental health service in Ontario, Canada known as an Alternate Destination Clinic (ADC). Specific objectives were to: (a) to explore the experiences of PWLE within a community-led health service co-design process; and (b) to identify lessons learned for engagement of PWLE that can be applied to future health service co-design processes. Using qualitative descriptive methodology, from March to April 2024, focus groups were conducted with organizational staff ( n = 2 focus groups) and semi-structured interviews ( n = 17 total) with service providers ( n = 11) and PWLE ( n = 6) involved in the ADC co-design process. Data collection focused on participant experiences and observations with respect to the participation of PWLE. Data were analyzed using content analysis, informed by the Bee et al. framework for service user-involved care planning. Participants emphasized organizational recruitment efforts, the co-design committee’s structure, and how roles were designed and communicated as factors that affected PWLE experiences. Lessons learned include a need for diverse recruitment practices, the provision of appropriate training to service providers (i.e., on trauma-informed care, language use), and the importance of empowering PWLE to develop and hold key decision-making roles within co-design processes. Findings point to the integration of individual, relational, and organizational factors in shaping the experience of PWLE in the service co-design process, and collaboration dynamics overall.