People with intellectual and developmental disabilities (IDD) often experience significant health disparities resulting in limited health care and poor health outcomes including decreased life expectancy, increased comorbidity of conditions, and increased prevalence of chronic conditions. People with IDD and their caregiving communities typically lack the opportunities to be engaged partners in the research process or identification of relevant health priorities. Inclusive research practices can provide valuable insight into the research process that can have a direct impact on physical and social health outcomes, reducing overall health disparities.
This project is the next step in the project team’s collaboration with its multi-state Special Olympics partners. The team’s Eugene Washington award, Research Engagement with People with Intellectual and Developmental Disabilities, has served as the foundation for the current proposal for a community convening and is in response to identified stakeholder needs. The team will host a Health Research Summit that incorporates a diverse stakeholder group in the planning, execution, follow-up, and dissemination of materials. The Health Research Summit will be held at the Waisman Center in Madison, Wisconsin and will focus on research collaboration and building capacity related to health disparities, health promotion, and access to health services for people with IDD. Stakeholders from the team’s five state collaborators and key personnel will serve as the conference committee team. Attendees (people with IDD, caregivers, physicians, case managers, and university researchers) will participate in the training of leadership teams on the Health Research Toolkit that was created through the team’s prior work. It will emphasize interactions between IDD stakeholders and community and university research team members to facilitate research focused on identified health priorities for future comparative effectiveness research.
The objectives of this proposal are to:
- Develop a skilled diverse community of stakeholders to provide advocacy for and engage in health research
- Create an opportunity for the meaningful exchange of health research priorities between community and university health researchers and the IDD stakeholder community
The project team will train stakeholder leadership teams in five states to implement and disseminate the Health Research Toolkit in their communities. The team will build on Special Olympics International infrastructure by integrating follow-up support into local leadership programming. In collaboration with stakeholders, the team will create Guidelines for Research Participation for people with IDD in university research programs. Guidelines will be available electronically and disseminated through both university and IDD organizations. Finally, the team will create a framework for a multi-site Health Research Team to collaborate on identified health priorities for future comparative effectiveness research. Potential funding sources, research agendas, and a timeline will be outlined. The long-term goals will be to build sustainable regional communities of IDD stakeholders to provide an infrastructure for future research collaboration on identified health priorities. The team will leverage both university and existing Special Olympics infrastructure to collaboratively disseminate and sustain health research participation and engagement.