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.

        Black Doctor with White Child

        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 无码人妻 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. 

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        Meet our Advisory Board

        Deborah Morrison

        Deborah Morrison

        Darien Todd, ASCE, ALCD

        Darien Todd, ASCE, ALCD

        Jessica Baker

        Jessica Baker

        Teal Benevides, PhD, MS

         Teal Benevides, PhD, MS

        Janice Nodvin

        Janice Nodvin

        Brandt White

        Brandt White

        Mark Crenshaw, MTS

        Mark Crenshaw, MTS

         Charles Miller

        Charles Miller

        Christina Fishback

        Christina Fishback

        Curriculum Development Committee

        Anne Gaglioti, MD, MS, FAAFP

        Anne Gaglioti, MD, MS, FAAFP

        Karla Ausderau, PhD

        Karla Ausderau, PhD

        Mark Crenshaw, MTS

        Mark Crenshaw, MTS

        Carl Tyler, MD, MSc

        Carl Tyler, MD, MSc

        Molly Tucker, MSW

        Molly Tucker, MSW

        Lin Miao, MPH

        Lin Miao, MPH

        Strategic Advisors

        Anne Gaglioti, MD, MS, FAAFP

        Anne Gaglioti, MD, MS, FAAFP

        Teal Benevides, PhD, MS

         Teal Benevides, PhD, MS

        Carl Tyler, MD, MSc

        Carl Tyler, MD, MSc

        The study is being conducted through funding by the Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EASC #00238).