Grant: Catalyst Grant: Partnering for Impact - Strategy for Patient-Oriented Research

Adults with developmental disabilities are often excluded from knowledge mobilization activities in health research, service, and policy, which undermines their equitable representation. They are typically excluded from discussions on important health issues, raising the question of how effective evidence-based research can be if it excludes their voices. This exclusion is especially concerning given that adults with developmental disabilities experience higher rates of poor health outcomes and are more likely to experience premature and avoidable deaths compared to the general population. This project will build the capacity of adults with developmental disabilities and family caregivers to be active partners in health care research and health system planning across Ontario. This will be achieved by working in partnership with adults with developmental disabilities, family caregivers, and knowledge users (e.g. healthcare and disability service providers, policy makers) to remove barriers by: 1) providing education and training to equip adults with developmental disabilities and family caregivers with skills needed for sustained meaningful participation, and 2) supporting knowledge users in how to meaningfully engage this population with co-creating, co-designing, and co-producing research, service, and policy outputs. Through participatory methods and knowledge translation principles, adults with developmental disabilities, family caregivers and knowledge users from across the province will work together to develop a co-produced provincial framework to support the long-term inclusion and accessibility of health research, service, and policy, ensuring that people with developmental disabilities and family caregivers are not only included but positioned as key contributors. This co-produced framework will be shared with other provinces across Canada through the SPOR network to help them build capacity for authentic inclusion of this group in health initiatives.