Project Summary
People with intellectual and developmental disabilities (IDD) face many barriers in accessing adequate health care, and have high rates of chronic diseases and health complications. Yet, research has rarely included input from this population. There are many reasons for this, including literacy and knowledge levels, as well as power differentials and stigma. Currently, there are few individuals with IDD who are prepared to participate meaningfully as stakeholders in research due to lack of educational opportunities, experiences, and information. Through the Partners in Research project, The Texas Center for Disability Studies (TCDS) at The University of Texas at Austin will address this gap by building capacity among people with IDD to play meaningful roles in research, and then connecting researchers with individuals with IDD who are interested in becoming patient partners in the research process.
To accomplish these objectives, TCDS will first recruit and establish an advisory council composed of health researchers and adults with IDD. The advisory council will collaborate with TCDS staff to create, implement, and evaluate a Partners in Research course designed to educate individuals with IDD about research. The free course will launch in Austin, Texas during the project period. The course will be co-taught by people with and without IDD. Using course participant and advisory council feedback, course curriculum will be evaluated and modified. By the end of the project period, a replicable course curriculum guide will be created that can be used nationally to build research capacity among people with IDD. Additionally, a website and database will be built to connect researchers with interested adults with IDD who have completed the Partners in Research course and are ready and willing to serve in meaningful roles on research teams. Engaging people with IDD in all aspects of the research process will ultimately result in research goals, outcomes, and dissemination that will be more relevant and easily understood by people with IDD, improving their health and lives.
Projected outputs for this project are the development and local implementation of a Partners in Research course curriculum, designed to educate people with IDD about all aspects of the research process, a Partners in Research website and database, and the development of a final replicable course curriculum that can be used to build capacity among people with IDD nationally.
Project collaborators include local nonprofits, local federally funded disability organizations including the Texas A&M Center on Disability and Development, local university partners, and the Association of University Centers on Disabilities.