Background: Research on intellectual and developmental disabilities (IDD), including comparative effectiveness research (CER), has largely been conducted with white, English-speaking, financially advantaged participants. The failure to include ethnically, racially, cognitively, and economically diverse samples precludes these communities from the benefits of participating in CER. Ultimately, healthcare solutions continue to be crafted and delivered in ways that further marginalize these communities.
Proposed Solution to the Problem: The solution is to increase trust between researchers and community partners and to give both the experiences and skills needed to co-create an impactful PCOR/CER agenda, meaningful opportunities for participation in CER for individuals with IDD, procedures to ensure ongoing dialogue, and enlist community members as active partners in CER infrastructure building.
Objectives: The objective is to build a network of academic community partnerships between MIND Institute researchers, self-advocates, and community stakeholders, especially those from diverse and underserved communities, to support a continuum of innovative lifespan CER on IDD. The foundation of the network will be local sustainable partnerships, with expansion nationally. The project will: (a) identify determinants of community participation in IDD CER from community stakeholder, self-advocate, and researcher perspectives; (b) form teams of researchers, community stakeholders, and self-advocates to address barriers and develop universally accessible materials and procedures to support future CER that include training for self-advocates and community stakeholders from diverse communities in CER design and training for researchers in supporting partnerships with these groups; (c) train community stakeholders, including self-advocates, to serve as Research Navigators to recruit new community partners; and (d) work with the team’s national research networks (CEDD; IDDRC; AIR-B; AIR-P) to encourage adoption of the CAP model and training materials when conducting CER.
Activities: We will form a Coordinating Committee (CC), which will be charged with oversight of the project; Focus Groups: three parallel tracks of focus groups will be conducted to include researcher, community stakeholder, and self-advocate tracks to obtain an unbiased, comprehensive understanding of how different participant groups perceive barriers and facilitators to successful CER for people with IDD; Community Academic Partnership (CAP) teams. Three CAP teams of 10-12 members each will be formed. Each will have a specific substantive focus, such as CER research to address equitable access to care, telehealth services, adult transition services; National Dissemination Group. In the final half of Year 2 of the project, a small specialty group—the National Dissemination Group, comprised of the project leadership and members from the CAP teams—will make presentations on the project processes, outcomes, and products to the AIR-P, AIR-B, and IDDRC networks.
Projected Outcomes and Outputs: Short-term outcomes are a network of local researchers, community members, and self-advocates trained to conduct community-engaged CER who view themselves as equal, committed, sustainable teams of partners, with each team focused on a different CER topic; and a cohort of Research Navigators who build new partnerships between the community and academia. In the medium term, CER at the MIND Institute will expand with an increasing number of diverse community partners. In the long term, manualized procedures, materials, and processes will be adopted by other research centers nationally, while the local MIND Institute network continues to grow.
Patient and Stakeholder Engagement Plan: The MIND Institute has a strong history of working with diverse communities in California, including people with IDD. The team will leverage this rich network of partnerships and established mechanisms for co-creation of procedures and materials for the current project. Community members, including self-advocates, have been involved from project development and will have input in all aspects of planning and implementation, and they serve as members of academic-community teams and as community Research Navigators beyond the duration of the project.
Project Collaborators: MIND Institute groups supporting Black and Latinx parents; state organizations supporting IDD in urban and rural areas; Statewide Self-Advocacy Network; Autism Intervention Research Networks in Behavioral and Physical Health; and the IDDRC Network.