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

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

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. 

To address these challenges, the National Center for Primary Care (NCPC) at Morehouse School of Medicine is conducting a study to build capacity to engage people with intellectual and developmental disabilities (IDD) as partners in the full spectrum of patient centered outcomes research (PCOR) conducted in our practice-based research network and across the state of Georgia. Project activities include: (a) conducting listening sessions with people with IDD, family members, and direct support professionals (DSP) to assess barriers and facilitators to research engagement; (b) developing 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) recruiting people with IDD and other key stakeholders to serve on a stakeholder advisory board (SAB); and (d) building capacity among people with IDD and other stakeholders via participation in the PRIDE program. 

Meet our Advisory Board

Curriculum Development Committee

Strategic Advisors