Project Snapshot: Representative Involvement

This example shows how a PCORI-funded project demonstrated this expectation, Representative Involvement, in practice.

Building a culturally responsive relationship that prioritizes community

Researchers studying differences in health outcomes across groups looked at data and identified a local community that had poorer chronic disease outcomes. Because of a history of trauma, this community had a high level of distrust in US health care and health research.

For more than a year, researchers and community leaders built a relationship with each other. Researchers worked hard to gain an understanding of the community’s culture, which centered on the collective – family, cooperation and community respect. Researchers attended events important to the community. To gain a better understanding of community strengths and priorities, researchers and community leaders worked together to conduct surveys, focus groups and interviews in the language of the community. Community members selected diabetes as the most important issue to study. 

Researchers invited community members with lived experience of diabetes to serve as partners on an advisory board. Researchers shared information about the potential project, asked community partners what they needed to be advisors and then provided support and training. The team also practiced cultural responsiveness while working as partners and a nurse educator and community member co-facilitated trainings for the team. Meetings began and ended with valued community practices, including time for informal conversations and a prayer offered by a church leader.

Researchers and community partners planned and conducted a pilot study that tested a family-focused intervention. They then applied for and received PCORI funding to conduct a larger randomized controlled trial. At the end of the project, the team shared results with the community in ways that were appropriate for this community, for example using interpreters and materials in the community’s language. Together, researchers and community partners then began planning other studies on other health disparities experienced by this community.