Background: Young adults with intellectual and developmental disability (IDD) face significant challenges with regards to health and wellness. These include inequities in access to preventive and promotive health care, engaging in fewer health promoting behaviors, and unmet needs related to the social determinants of health (referred to as health-related social needs, or HRSN) such as housing instability, food insecurity, or transportation difficulties. These challenges result in negative long-term health outcomes such as higher rates of diabetes and other chronic diseases. Finding effective strategies to support young people with IDD with health promotion and meeting their HRSN as they transition into adulthood is critical for enhancing their long-term health and well-being. Yet, currently, the voices of young adults with IDD and other key stakeholders are largely absent from efforts to identify effective strategies for health promotion and meeting HRSN.
Proposed Solution to the Problem: The project team will create community stakeholder coalitions with commitment, capacity, and clearly identified priorities for patient-centered outcomes research (PCOR) that will advance the health and wellness of young adults with IDD.
- Create a network of key stakeholders (young adults with IDD, their family members, staff from service-provision organizations, and medical providers) with the commitment and capacity to collaborate on PCOR/comparative clinical effectiveness research (CER) to improve health promotion and HRSN for young adults with IDD
- Identify key stakeholders’ priorities related to health promotion and meeting HRSN for young adults with IDD
- Establish community research agendas for future PCOR/CER (protocol development and research to take place after engagement project is complete) on health promotion and meeting HRSN for young adults with IDD
Activities: The project team will convene stakeholder coalitions in Colorado Springs and Grand Junction, Colorado. These coalitions will engage in capacity building for research and self-advocacy. They will then use Photovoice and community input to develop a research agenda for future PCOR/CER projects.
Projected Outcomes and Outputs:
- Understanding of current stakeholder assessments of health promotion needs and HRSN in young adults with IDD
- Network of stakeholders committed to research on health disparities in adults with IDD
- Agenda for PCOR/CER on strategies to improve health promotion and meet HRSN in young adults with IDD
- Short-term: Capacity to conduct PCOR/CER on strategies to improve health promotion and meet HRSN for young adults with IDD
- Long-term: Improved downstream health outcomes for adults with IDD and increased engagement of young adults with IDD in their own health and social care
Patient and Stakeholder Engagement Plan: Stakeholders in this project will be young adults with IDD, their families or caretakers, professionals who care for young adults with IDD, payers, clinicians, researchers, and public health professionals. There will be an advisory committee that will guide and direct project activities (meet quarterly), two community coalitions who will become fully engaged research partners by the end of the project (meet monthly), and other community members who will provide input on the research agenda (four community input sessions).
Project Collaborators: Special Olympics Colorado, two community-centered boards in Colorado (TRE and STRiVE), Rocky Mountain Health Plans, Colorado Access, University of Colorado, and Peak Vista Health Center.