Eugene Washington PCORI Engagement Award Announcement

Date: 
05/01/2020

 

Reconciling the Past & Changing the Future: Engaging Young Adults with IDD-MH and Researchers in CER

The Center for START Services is pleased to announce a new project funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EA #15364). The project, "Reconciling the Past & Changing the Future: Engaging Young Adults with IDD-MH and Researchers in CER," is a collaboration of the University of Florida, Georgetown University National Center for Cultural Competence (NCCC), and the Center for START Services (CSS) at the University of New Hampshire, Institute on Disability.

Project Approach
Adapted from a Georgetown University NCCC model, this is the first project explicitly designed to provide an innovative process for reconciliation and meaningful involvement of young adults with IDD-MH and their families in comparative effectiveness research (CER). The project is grounded in the principles and practices of community engaged research, cultural and linguistic competence, universal design for learning, and positive psychology. These principles and practices are exemplified by stakeholder engagement at all levels of the project including two young adults with IDD-MH who are members of the leadership team, a national advisory committee comprised of key stakeholders, CSS staff, START network staff, and the National Research Consortium on Mental Health in Intellectual and Developmental Disabilities. The project will use Truth & Reconciliation Forums and Transforming Research Forums to provide a structured context that begins the process of: 1) reconciling past and current harms and exclusion; and 2) learning new approaches that support attitudinal and behavior change among all stakeholders- which is the catalyst for meaningful partnerships for CER.

Anticipated Outcomes
At the conclusion of the project there will be increased capacity of young adults with IDD-MH, their families, and researchers to partner in CER that optimizes the health outcomes valued by this population. The project will create a number of products and publications including but not limited to materials and guides to conduct truth and reconciliation and transforming research forums that will be disseminated to the public.

Funder
This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EA #15364). Visit PCORI website to learn more about the project.

View the full project summary