This Working Group aimed to have wide-ranging impact across the CTSA network, the broader disability community, and potentially across other NIH institutes. It was anticipated that this work would result in practical strategies and materials. Perhaps more importantly, it provided a constructive model for a culture change in the research community that elevated the perspectives of individuals with lived experience in ways that resulted in meaningful research outcomes for the lived experience community. It was anticipated that both the toolkit and the published paper would be promoted by the Association of University Centers on Disabilities (AUCD) network to enhance disability-related research and might be adopted by a number of NIH institutes for research that includes individuals with lived experience with other health priorities (e.g., diabetes, cardiovascular disease, cancer, neurodegenerative disease, sickle cell disease).
Engaging Individuals with Disability in the Research Process
Overview
This Working Group aimed to have wide-ranging impact across the CTSA network, the broader disability community, and potentially across other NIH institutes. It was anticipated that this work would result in practical strategies and materials. Perhaps more importantly, it provided a constructive model for a culture change in the research community that elevated the perspectives of individuals with lived experience in ways that resulted in meaningful research outcomes for the lived experience community. It was anticipated that both the toolkit and the published paper would be promoted by the Association of University Centers on Disabilities (AUCD) network to enhance disability-related research and might be adopted by a number of NIH institutes for research that includes individuals with lived experience with other health priorities (e.g., diabetes, cardiovascular disease, cancer, neurodegenerative disease, sickle cell disease).
Group Goals
Provide the research community with knowledge, resources, and tools that will facilitate engagement of individuals with lived experience in the conduct of research.
Provide the research community with a process that enhances the quality of scientific outcomes and meaningfulness of the research to the community that is the focus of the research.
Meeting Archive
This group met regularly to work towards achieving the goals of the CTSA Program. For questions, please contact support@ccos.ctsa.io.
Contact Information
For more information about this working group, please contact the CCOS Support Team.
Contact Information
For more information about this working group, please contact the CCOS Support Team.
