Project Summary

Power differentials between researchers and participants have increasingly been recognized, especially for individuals from marginalized populations including people with intellectual and developmental disabilities (IDD). This differential is especially important when considering the significant health disparities for people with IDD, 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 that would provide valuable insight into meaningful questions, methodological processes, and outcomes that could have a direct impact on their physical and social health, reducing overall health disparities.

Building on previous successful collaborations with Special Olympics, the project team will incorporate stakeholders, including people with IDD and their caregivers, in the development of a structured process, tailored to the needs of individuals with IDD, that will support their engagement in future patient-centered comparative effectiveness research (CER). The researchers aim to develop a skilled community of stakeholders (i.e., people with IDD, their caregiving community, and community organizations) to participate in the development and evaluation of health outcomes for research. These stakeholders will serve as an advisory council and state working group team members, contributing to the creation of a highly accessible toolkit to support engagement of individuals with IDD and their caregivers in the research process. In collaboration with the state and national partners, the team will identify research priorities aligning with identified health disparities for people with IDD for future patient-centered CER.

The objectives of this proposal are to:

  • Build sustainable regional communities of IDD stakeholders to provide ongoing input to patient-centered CER priorities, methodological processes, and relevant person-centered health outcomes
  • Leverage existing Special Olympics infrastructure to nationally disseminate the toolkit in order to increase participation and engagement in patient-centered CER and improve health outcomes
  • Post project, conduct patient-centered CER trials that incorporate people with IDD, focusing on their research priorities

This project will develop a skilled community of stakeholders through collaboration with Special Olympics to create capacity-building working groups. Groups will collaborate to develop stakeholder training modules focused on leadership, research fundamentals, and health. Collaboratively developed trainings will be piloted to support revision of the toolkit for the engagement of people with IDD in research. A range of stakeholders will be essential members of the team to design and provide critical feedback on the effectiveness of the toolkit, patient-centered CER priorities, and ecologically valid methodologies. Finally, research priorities will be refined, and the research engagement toolkit will be nationally disseminated to Special Olympics and relevant community organizations. The toolkit will be the first of its kind to provide an accessible, structured process with the necessary training for people with IDD and their paid and unpaid caregivers to be engaged partners. Through collaboration, traditional research methodologies will be challenged to confront longstanding barriers and develop procedures that are inclusive for people with IDD.

Engagement Resources

Project Information

Karla Ausderau, PhD
Leann Smith Dawalt, PhD
University of Wisconsin, Madison
$249,994

Key Dates

December 2020
2018
2020

Tags

Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: April 12, 2024