The project Leadership Team developed a website to share what was learned during this project to begin to reconcile past harms and change the way research is conducted with persons with intellectual and developmental disabilities and mental health service experiences (IDD-MH) and their families.

The website is organized around four guiding principles that support partnerships between young adults with IDD-MH, family members, and researchers:

  • Know about and work to prevent harms in IDD-MH research and practice.
  • All aspects of research must have meaningful involvement of persons with IDD-MH and their families.
  • When people use their individual strengths, the team is stronger as a whole.
  • Research always takes place in a cultural context.

Visit each guiding principle in this website for tools and strategies that support research partnerships between young adults with IDD-MH, family members, and researchers.  Each section incorporates materials that can be used by young adults with IDD-MH, family members, and researchers. The materials include videos, PowerPoint slides, and downloadable handouts.

The website is hosted by the Center for START Services:

This website includes resources that can be used in the broader healthcare research community to support the uptake of engagement practices and methodologies with individuals with the lived experience of IDD-MH and their families.

Disclaimer: This tool was developed and provided by a third party. Opinions and information in this content are those of the third party and do not necessarily represent the views of PCORI. Accordingly, PCORI cannot make any guarantees with respect to the accuracy or reliability of the information and data in this content.