Background: Wyoming is a frontier state with severe healthcare shortages and disparities for those with intellectual and/or developmental disabilities (IDD). Existing solutions are ineffective for rural states that have low healthcare resources and a distributed population. Opportunities for residents with IDD to participate in the research to develop effective solutions are virtually nonexistent.
Proposed Solution to the Problem: The project team will use the Equality State Research Network (ESRN), at the Wyoming Institute for Disabilities (WIND) based in Laramie, Wyoming, to develop additional engagement opportunities for the IDD community. The ESRN is a community- and practice-based research network that focuses on rural health issues and has a robust statewide membership. This network will be leveraged to engage with and create opportunities to enhance PCOR/CER related to IDD issues that are most important for rural residents.
Objectives: To empower the IDD community to be effective partners in CBPR focusing on PCOR/CER that improves health outcomes for this community.
- Hire an individual with IDD as a research associate who will support the implementation of these activities and provide input on how to make the team’s work more inclusive of those with IDD
- Enhance the membership of the ESRN to include 40 percent more individuals with IDD in leadership roles, increase participation in general, and expand the overall focus of the ESRN to include IDD priorities
- Use Journey Mapping technique to understand the experiences of those with IDD related to health care and PCOR/CER and use this to develop a roadmap for future inclusion of those with IDD
- Develop accessible multimedia-based trainings for those with IDD to prepare them to collaborate in PCOR/CER and to support researchers who want to partner with this community
- Use IDD and ESRN state conferences to disseminate the team’s work and to develop IDD-related priorities for the ESRN to guide ongoing work
Projected Outcomes and Outputs: This will lead to sustained engagement efforts with the IDD community, continue to support research projects on priority IDD issues, create leadership positions for individuals with IDD, and develop accessible trainings. All of this will continue to support IDD inclusion beyond the funding period and over the long term, this will lead to community-engaged research and solutions to persistent problems facing this community.
Patient and Stakeholder Engagement Plan: This project will engage with individuals with IDD through direct hiring, creating leadership opportunities, providing accessible training on PCOR/CER and how to be effective partners in research as well as training to researchers on how to effectively collaborate with the IDD community and will provide venues for all stakeholders to interact with each other. The team will use the Journey Mapping technique to document the experience of those with IDD in Wyoming related to their experiences with health care and research and will use several local conferences to disseminate the team’s work and to gain additional perspective on their research priorities.
Project Collaborators: This work will be administered through the ESRN and its network of community and clinical partners, including statewide IDD advocacy and support organizations, the state health department, the Wyoming Governor’s Council on Disabilities, assistive technology programs, telehealth programs, public health nursing, disability providers, Medicaid, and others.