Mobilizing ‘community’ for equity-driven change: The Canadian Aging Action Research and Education (CAARE) Group for Mental Health

Background: To improve population health outcomes in community-based care and sustainably attend to the holistic care needs of a growing aging population, aging-focused mental health support, care and treatment are critical. To bridge the gap between research and real-world needs, we identified priority research questions on aging and mental health according to Canadians using a priority setting partnership approach. The steering group of experts-by-experience involved in the priority setting work was committed to continuing to mobilize change and evolving their partnership with our research team. In this presentation, we will share reflections on how we have continued to collaborate with and engage this group of experts-by-experience to enhance the quality and relevance of our research projects.

 

Approach: The Canadian Aging Action, Research, and Education (CAARE) for Mental Health Group was formalized in 2021, guided by the belief that applied health services research that values, and is centered around, lived experience produces equity-driven, action-oriented solutions to contemporary challenges. The CAARE Group aims to: 1) build and sustain authentic partnerships; 2) co-design and support projects on the priority research questions on mental health and aging; and 3) advocate and/or apply for funding to support the priorities and activities of the group. The group meets quarterly and is facilitated by embedded researchers working in a learning health system model.

 

A sub-group of members help to co-lead group activities in partnership with applied researchers that shape the group’s direction and drive its collective action. In line with commitments to democratize research and challenge cultural norms of ‘expertise’, honoraria are available to members, demonstrating equitable value of members' time.

 

Results: The CAARE group includes 21 members from 5 Canadian provinces and 1 territory representing older adults, caregivers, health and social care providers, and professionals working in mental health. A total of 20 meetings have been held to date. Group members have guided a pan-Canadian study to co-design and test a Mental Health Conversations Initiative targeted to home and community care. This study addresses the top research priority—to equip the community workforce with evidence-informed mental health skills. The CAARE Group is currently partnering with researchers to co-produce a planning grant funding proposal to address the priority research area of supporting the wellbeing of double-duty caregivers and the older adults they care for.

 

 By valuing and centering expert-by-experience perspectives, the group promotes relationships and joint-ownership through meetings intentionally designed to encourage open discussion and to elicit feedback. This approach to community engagement shifts the focus of research priorities toward addressing challenges that matter most to the community.

 

Implications: As system planners and decision-makers continue to think about ways to better link services to provide holistic, seamless care, the CAARE Group offers an example of including, valuing, and mobilizing ‘community’ to catalyze transformative change. By empowering experts-by-experience and providing meaningful opportunities for diverse participation in research, solutions generated are expected to be more timely, sustainable, and aligned to lived experience.