This Working Group is expected to have wide-ranging impact across the CTSA network, the broader disability community, and potentially across other NIH institutes. It is anticipated that this work will result in practical strategies and materials. Perhaps more importantly, it will provide a constructive model for a culture change in the research community that elevates the perspectives of individuals with lived experience in ways that result in meaningful research outcomes for the lived experience community. We anticipate that both the toolkit and the published paper will be promoted by the Association of University Centers on Disabilities (AUCD) network to enhance disability-related research and may 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 is expected to have wide-ranging impact across the CTSA network, the broader disability community, and potentially across other NIH institutes. It is anticipated that this work will result in practical strategies and materials. Perhaps more importantly, it will provide a constructive model for a culture change in the research community that elevates the perspectives of individuals with lived experience in ways that result in meaningful research outcomes for the lived experience community. We anticipate that both the toolkit and the published paper will be promoted by the Association of University Centers on Disabilities (AUCD) network to enhance disability-related research and may 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.
Upcoming Meetings
This group meets on the second Monday of every month from 12:00 to 1:00 p.m. ET. To stay updated on these meetings, including agendas, presenters, and meeting minutes, please visit the link below.
Engaging Individuals with Disability in the Research Process WG - 12/09/2024
Monday, December 9, 2024
12:00 PM - 01:00 PM EST
Engaging Individuals with Disability in the Research Process WG - 12/09/2024
Monday, December 9, 2024
12:00 PM - 01:00 PM EST
Upcoming Meetings
This group meets on the second Monday of every month from 12:00 to 1:00 p.m. ET. To stay updated on these meetings, including agendas, presenters, and meeting minutes, please visit the link below.
Contact Information
For more information or to join this Working Group, please contact the CCOS coordinator.
Melissa Brady
CCOS Meeting Coordinator
Contact Information
For more information or to join this Working Group, please contact the CCOS coordinator.
Melissa Brady
CCOS Meeting Coordinator