Background: People with IDD have varying degrees of limitations in learning, problem solving, and social and life skills. As youth with IDD grow older and transition to adulthood, they face unique healthcare needs. More research is needed in this area, and stakeholders (e.g., people with IDD, caregivers, and clinicians) should be part of it.
Proposed Solution to the Problem: This project will build research capacity among stakeholders using a Project Extension for Community Healthcare Outcomes (Project ECHO) model. This PCOR/CER learning community will unite learners in virtual sessions, thereby allowing these groups real-world practice in sharing their points of view, learning from each other, and building trust while learning PCOR/CER.
• Create a regional advisory board that includes people with IDD and other stakeholders
• Harness the Project ECHO model to engage in co-learning on PCOR/CER among people with IDD and other stakeholders, along with researchers, to improve health outcomes in people with IDD
• Identify future engagement activities that meet the needs of people with IDD and stakeholders, building toward co-creating research proposals focused on PCOR/CER. These proposals will focus on improving health outcomes in transition-age youth and adults with IDD.
Activities: The project team will hold two rounds of ECHO training sessions on PCOR/CER related to transition to adulthood/adulthood, with each round occurring over six months (meeting twice monthly for 60-90 minutes per session), to create an “all teach, all learn” community.
Projected Outcomes and Outputs:
• Expand existing patient and stakeholder board formed through a previous PCORI award to include IDD patients and stakeholders from the surrounding region (Atlanta, Tennessee, and Missouri)
• Enhance capacity building and sharing of knowledge on PCOR/CER in IDD through the ECHO model among people with IDD and other stakeholders
• Engage people with IDD and other stakeholders to identify priority areas to enhance health outcomes of transition-age youth and adults with IDD
• The regional advisory board will work collaboratively toward developing future PCOR/CER to improve health outcomes in transition-age youth and adults with IDD.
• Share knowledge gained through ECHO on building capacity among individuals with IDD regionally and nationally with others working in PCOR/CER
• Sustain working relationships among patients and stakeholders
• Enhance accessibility of project findings to patients and stakeholders
• Harness knowledge gained from this project toward future PCOR/CER grant applications aimed at improving health outcomes in transition-age youth and adults with IDD
Patient and Stakeholder Engagement Plan: This project will engage people with IDD and stakeholders who will come together through the ECHO project platform twice monthly for 12 months. Additionally, stakeholders from Georgia, Tennessee, and Missouri will convene quarterly in a regional advisory board to provide guidance to the project.
Project Collaborators: The project lead, Beth Malow, MD, represents Vanderbilt University Medical Center in Nashville, Tennessee. The project co-lead, Susan Brasher, PhD, CPNP, represents Emory University School of Nursing in Atlanta, Georgia. Collaborators include people with IDD and other stakeholders in the regional area of Georgia, Tennessee, and Missouri.
Beth Malow, MD, MS
Susan Brasher, PhD, MSN, BSN
Vanderbilt University Medical Center
Last updated: January 20, 2023