Building Evaluation Capacities in Third Sector Organizations to Improve Evidence-informed Community-delivered Brain Health Care

Background: Community organizations play a crucial role in supporting people with brain health challenges and disorders, bringing unique community-based insights and solutions to brain health care that compliment formal healthcare. However, these organizations face challenges in demonstrating the effectiveness of their impactful work, creating asymmetries in evidence production that limit their integration into the broader health ecosystem. Approach: The Ontario Brain Institute (OBI) developed the Growing Expertise in Evaluation and Knowledge Translation (GEEK) program to enhance the ability of community-based organizations (CBOs) to evaluate and generate evidence for their programs. The GEEK program builds workforce capacity by providing three key supports: skilled evaluator partnerships to co-develop evaluation plans, funding for both evaluation and program delivery, and ongoing capacity-building opportunities. With a theory of change centered on building evidence for community-led brain health care, the GEEK program aims to help CBOs demonstrate their value, refine programs, improve sustainability, and position community care as an essential component of integrated brain health systems. From 2018 to 2023, 20 CBOs received support through the GEEK program. Through an evaluation that leveraged document reviews, surveys, direct engagement, and case studies we assessed the program’s effectiveness and identified areas for improvement. Results: The evaluation showed that GEEK has increased CBOs' knowledge and capacity to conduct evaluations, strengthened the evidence base, and facilitated evidence-informed program enhancements. Participating organizations reported using evaluation findings to improve program design (87.5%), delivery (100%), reach (50%), and sustainability (50%), demonstrating how evidence generation can transform community care from supplementary support to an integrated component of brain health systems. The OBI identified that community organizations offer unique value in four key areas: accessibility of services, creation of belonging/connection, skills-building/information-sharing, and fostering agency among those with brain disorders. Facilitators to success included the GEEK program structure (funding, capacity-building, and evaluator partnerships), organizational support, and growth-oriented team cultures within CBOs. Barriers included scaling challenges (project resources, lack of ongoing funding) and limited mechanisms for knowledge translation. Implications: The GEEK program addresses asymmetries in evidence production between CBOs and formal healthcare systems, highlighting the importance of enabling CBOs to generate evidence that demonstrates their unique contributions to brain health care, creating pathways for meaningful integration of community solutions into the healthcare ecosystem. We note that funding for evaluation remains a persistent barrier to CBO’s participation in the evidence ecosystem. Next steps include forming partnerships to scale the GEEK program, developing knowledge translation mechanisms that help community organizations effectively communicate evidence to influence healthcare systems and policy decisions, and ultimately identifying care integration pathways for successful GEEK program recipients. Our goal is to promote person-driven care systems that draw on the strengths of both community and formal health care approaches.