Background: There are community participation disparities for individuals with intellectual and developmental disabilities (ID/DD), which can negatively affect health outcomes, quality of life, and well-being for themselves and family members. Finding solutions to this problem is difficult because individuals with ID/DD are underrepresented in research, making it harder to ascertain how patient-centered outcomes research can and should proceed.
Proposed Solution to the Problem: The project team has an established multi-stakeholder network in three regions of the United States—the Northeast (Philadelphia, Pennsylvania), Northwest (Seattle, Washington), and South (Augusta, Georgia). Stakeholders from the team’s previous engagement project placed high value on community meetings and a diverse configuration of community stakeholders convening together. Inclusive engagement methods and attention to diverse communities were priorities reinforced by the stakeholder groups and an area of constant refinement and growth. In this community convening project, the team aims to: expand its national network to include community stakeholders in the Southwest and Midwest regions of the United States, and use selected engagement tools and methods in these new communities. The latter will further address access solutions so that members from diverse communities and people with diverse abilities—a necessary component of working with individuals with ID/DD—can engage fully in these activities.
- Expand an existing national network of stakeholders invested in research on community participation, health, and well-being for individuals with ID/DD by adding two US regions (Southwest and Midwest)
- Use inclusive engagement tools and methods in new communities with attention to transferability across culturally and linguistically diverse communities and diverse abilities
- Enrich an existing research roadmap around PCOR priorities with a sustainability plan
Activities: The team will hold two community convenings in each of the two new regional communities. The meetings will be facilitated by the team’s lead engagement coordinator and attended by multi-stakeholder groups. The convening themes will focus on: inclusive engagement of individuals with ID/DD in research; research priorities and meaningful outcomes around the topic of community participation as a determinant of health and well-being; and moving this stakeholder network further toward PCOR partnerships.
Outcomes and Outputs:
- National multi-stakeholder network of community members to support PCOR around community participation as a determinant of health and well-being for individuals with ID/DD
- Inclusive engagement methods suitable for diverse community stakeholders
- Enriched research roadmap that includes a sustainability plan
Patient and Stakeholder Engagement Plan: The team’s stakeholders are individuals with ID/DD (self-advocates), caregivers and family members, rehabilitation providers (occupational or physical therapists), administrators and service providers from community organizations, and policy makers. Regional members of these groups will participate in the community convenings. The lead and regional engagement coordinators, advisory board members, and an advisor on equity, diversity, and inclusion will spearhead community engagement.
Project Collaborators: Formal collaboration includes partnerships with Augusta University, mOTivating Access (Albuquerque), Fraser (Minneapolis), and two research and two community stakeholder consultants.