Empowering People with Intellectual and Developmental Disabilities (IDD) to Engage as Partners in Research

Background: People with intellectual and developmental disabilities (IDD) experience widespread disparities in health outcomes, including higher burdens of chronic diseases. 

Proposed Solution to the Problem: Patient-centered research that engages people with IDD as partners is needed to understand and address challenges related to clinical care delivery, coordination, and access, and to improve workforce capacity to provide appropriate and culturally competent care. 

Objectives: This project builds capacity for people with IDD to engage as partners in patient-centered outcomes and comparative effectiveness research (PCOR/CER) by creating needed infrastructure, including identification of barriers and facilitators to research engagement, an engagement curriculum that empowers people with IDD to engage in PCOR/CER, and a stakeholder advisory board (SAB) committed to successful implementation and sustainability. The project team is located in Atlanta, Georgia, and activities engage stakeholders from across the state and include local, state, and national advisors. The overall goal of this project is to create an infrastructure that empowers people with IDD and other stakeholders to engage in research.

Activities: Project activities include: (a) conduct listening sessions with people with IDD, family members, and direct support professionals (DSP) to assess barriers and facilitators to research engagement; (b) develop a new engagement resource, the Prioritizing Research Inclusion, Diversity, and Engagement (PRIDE) curriculum, an interactive series of learning sessions designed to introduce key research concepts, explore engagement opportunities across the full research spectrum, and provide specific trainings and certifications needed to participate in and advise PCOR/CER studies; (c) recruit people with IDD and other key stakeholders to serve on a stakeholder advisory board (SAB); and (d) build capacity among people with IDD and other stakeholders via participation in the PRIDE program. 

Project Outcomes and Outputs: Project outcomes include a report describing stakeholder-defined barriers and facilitators to research engagement; the PRIDE curriculum and a cohort of people with IDD who are prepared to engage in PCOR/CER studies; and an SAB invested in sustaining the project and building capacity to engage people with IDD in research. Medium-term outcomes after the project period include engagement of people with IDD and adoption of patient-defined research priorities in the team’s practice-based research network (PBRN). Long-term outcomes after the project period include development and execution of PCOR/CER studies conducted in the team’s PBRN and the broader research community that engage people with IDD as partners. Achieving these outcomes will advance health equity for people with IDD. 

Patient and Stakeholder Engagement Plan: The project team will engage people with IDD in every project activity: as experts in listening sessions; as leaders on the CDC and SAB; and as participants in the PRIDE program. A broader group of stakeholders are needed to engage people with IDD in PCOR/CER, so the team will engage family members and DSPs through listening sessions; researchers and clinicians through the CDC and SAB; advocates and policy makers through the SAB. 

Project Collaborators: The team will leverage existing strong relationships and activate a strategic dissemination network of trusted leaders in IDD, primary care, research, and community engagement to bolster the team’s reach. This project will be led by the National Center for Primary Care at Morehouse School of Medicine, in partnership with the Center for Leadership in Disability at Georgia State University. Other key partners include Case Western University and the Southeast Regional Clinicians Network.