Community Scientist Program Brings Perspectives of Underserved Populations into the Research Process
Published: February 16, 2023
The Community Scientist Program allows researchers to obtain feedback on the cultural appropriateness and relevance of their projects from trained community members representing diverse populations. Part of the Community Engagement Component of the UTHealth Houston Center for Clinical & Translational Sciences (CCTS) - MD Anderson Cancer Center, the program offers in-person and virtual sessions with Community Scientists from Houston, Northeast Texas, and the Rio Grande Valley. Researchers can use the program free of charge and participating Community Scientists are compensated for their time.
“The Community Scientist Program began in 2018 as a way to bring minorities and people of color into the research process,” said Sophia Russell, MPH, Program Coordinator at MD Anderson. “We started by recruiting from African American church communities with whom we had existing relationships, and we’ve expanded to some really diverse populations in regions that don’t typically get a lot of research engagement.”
Participating researchers present their work to a group of Community Scientists who then provide tailored, project-specific feedback, rather than the sort of general feedback that might be collected in a focus group. Researchers from all disciplines are encouraged to utilize the service at any point in the research process, from brainstorming grant applications all the way to implementation, analysis, or dissemination.
“Public patient involvement is a big buzzword that gets a lot of lip service, but this program really maximizes the full potential of community involvement,” said Jack Banks, PhD, who utilized the program to aid in the development of a decision-support tool. “We got a lot of really stellar feedback from the Community Scientist group that we used to enhance our tool. Without that feedback, the tool would not be anywhere near as strong as it is now.”
While the program originally utilized in-person feedback sessions, the COVID-19 pandemic necessitated a move to virtual sessions. The program now hosts up to 4 feedback sessions a month via Zoom, conducted in either English or Spanish, giving researchers the opportunity to engage Community Scientists from any or all of the participating regions.
“It’s important to include perspectives from the people a project is intended to benefit,” said Larkin L. Strong, PhD, MPH, Faculty Lead for the Community Scientist Program. “Obtaining community input and including them in the research process can help to improve the quality of research conducted. At the same time, there are a lot of barriers for researchers who would like to include these perspectives who haven’t already built these relationships. The Community Scientist program provides an efficient way for those researchers to get community and patient feedback."
The racially diverse pool of Community Scientists consists largely of community stakeholders with lived experiences of cancer or chronic disease. Community scientists join the program for a variety of reasons: some want to learn more about the research process, some want to support community-based research, and others want to serve as a voice for their communities.
“One size does not fit all and every community has its unique idiosyncrasies,” said Keith Downey, Community Scientist and President of the Kashmere Gardens Super Neighborhood Council. “We’re helping researchers understand the needs of the community and helping the community become better informed. We’re closing a gap between knowledge and trust, bringing everyone together to work towards a common goal. It goes to show that it doesn’t matter your race, creed, or color, we can work together towards a healthier city, a healthier state, and a healthier country.”
The program is available to researchers at UTHealth Houston, MD Anderson, The University of Texas Rio Grande Valley, the University of Texas at Tyler Health Science Center, Rice University, Texas Tech University Health Science Center El Paso, and the Memorial Hermann Hospital System, as well as community organizations.
The Community Scientist Program is funded through a joint grant with UTHealth Houston and supported by the Center for Clinical and Translational Sciences, which is funded by National Institutes of Health Clinical and Translational Award (UL1 TR003167) from the National Center for Advancing Translational Sciences. The content in this article is solely the responsibility of the authors and does not necessarily represent the official views of the National Center for Advancing Translational Sciences or the National Institutes of Health.
To participate in this program, contact Sophia Russell at [email protected].