Lessons Learned from Engaging People with Lived Experience in Co-Designing a Community Mental Health Clinic

Background: This study is anchored by a practitioner-researcher partnership between Region of Waterloo Public Health and Paramedic Services (ROWPHP) and the School of Public Health Sciences, University of Waterloo. ROWPHP is facilitating a collaborative process to co-design an Alternate Destination Clinic (ADC) for Waterloo Region, Ontario. In the ADC model, paramedic services would transfer consenting patients with mental health and/or substance use concerns to a community-based clinic, diverting away from a hospital emergency department. ROWPHP has prioritized a co-design model for the ADC initiative that includes service providers, as well as individuals with lived or living experience of mental health and/or substance use concerns, and their family caregivers (PWLE). The goal of this study was to conduct a partnership evaluation of the ADC co-design initiative thus far (2023-2024), with the following specific objectives: () to identify facilitators and barriers to the inclusion and participation of PWLE in the co-design process, from the perspectives of both PWLE and service providers; and (2) to identify lessons learned for ongoing and future engagement of PWLE in the co-design, implementation, and evaluation of mental health and substance use supports. Approach: From March-April 2024, we conducted focus groups with ROWPHP staff and management (n=2 focus groups) and semi-structured interviews (n=7 total) with service providers (n=) and PWLE (n=6) involved in the ADC co-design process. Data collection focused on participant experiences and observations on the co-design process, specifically with respect to the participation of PWLE. Data were analyzed thematically, using a constant comparative and inductive approach. Ethics approval was provided by the University of Waterloo Research Ethics Board (#: 45579) Results: Participants identified the following facilitators to the inclusion and participation of PWLE in service co-design: having a PWLE as co-chair of the process, allowing them to advocate for and amplify the voices and needs of others; holding virtual meetings which were more accessible to some individuals; and creating structured agendas with diverse opportunities for engagement (i.e., breakout sessions). Use of systems-jargonby service providers, overall limited diversity and intersectional representation from other equity-deserving groups (i.e., 2SLGBTQIA+, newcomers), and lack of clarity regarding expectations for involvement were identified as barriers to inclusion and participation of PWLE. Overall, participants described how engaging PWLE requires intentional actions that foster inclusive, meaningful, and effective engagement. 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), a need for flexible engagement opportunities for PWLE, and the importance of empowering PWLE to hold leadership and key decision-making roles within co-design processes. Implications: This study presents the facilitators, barriers, and complex challenges experienced when engaging PWLE in a co-design model for a community-based mental health and substance use clinic. Lessons learned from this case study may be instructive for other co-design processes that aim to centre and embed the voices of PWLE with mental health and substance use concerns.

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