Connecting Communities and Researchers Benefits Both

Posted in GUMC Stories

APRIL 2, 2016–Promoting partnerships between members of community organizations and academic institutions was the goal of a March 22 symposium at Gallaudet University. “Community-Engaged Research: Turning Knowledge into Action to Eliminate Health Disparities” was sponsored by the Georgetown-Howard Universities Center for Clinical and Translational Science (GHUCCTS) and the Center of Excellence for Health Disparities in the Nation’s Capital.

The two sponsoring organizations are involved locally in community-engaged research, according to Carla Williams, MD, associate professor of medicine at Howard University. The Center of Excellence for Health Disparities builds bridges between researchers, policymakers and community leaders to eliminate health disparities, while GHUCCTS takes a different approach to community-engaged research as a multi-institution consortium.

“Our focus [with GHUCCTS] is to really transform how science is done so that we can bring scientific advances faster to the people that need them,” Williams said. “And again, community is a part of that because we can’t bring something to communities unless we know that is something that communities need.”

Defining Community-Engaged Research

Community-engaged research isn’t a specific research methodology or a means to an end but “a process of building relationships so that you can work collaboratively with groups of people that are affiliated in some way,” Williams explained.

However, community engagement in research exists on a continuum with investigator-driven research on one side, followed by research that is community-placed, community-based and community-driven — the goal for the symposium’s sponsors.

The idea of research is discovering new information so with community-engaged research in particular, “we want to apply new information in new ways that actually improve the health of communities,” Williams said. “And to do that well requires commitment.”

The Researcher’s Perspective

Kristi Graves, PhD (new window), associate professor of oncology at Georgetown, spoke about her experiences working on a research project to address disparate health outcomes faced by Latina breast cancer survivors compared with their non-Latina peers. Graves is collaborating with Nueva Vida, a community-based organization serving Latina cancer patients and their families in Washington, D.C., Maryland and Virginia.

After they first met in 2007, Graves received a call from Nueva Vida’s executive director in 2012, explaining that the organization wanted to submit a research proposal to the Patient-Centered Outcomes Research Institute (PCORI) to evaluate a program that addresses quality of life disparities with Latina breast cancer survivors and their families.

“Not only did they have the program they wanted to evaluate, they brought the funding mechanism idea to the researcher,” Graves said. “It was a new agency. I had never even heard of it before. So those are two remarkable things about Nueva Vida right there.” The staff at Nueva Vida also connected Graves with three other organizations doing similar work.  

As a researcher, Graves felt some anxiety related to working with the partners. For example, she would have preferred to narrow the pool of potential participants to cancer survivors who had completed their treatment, but the partners vetoed that idea. The four organizations also offered different services for families facing cancer, making them difficult to compare.

“In terms of my own readiness, I needed to let go of needing to have a lot of internal validity,” Graves said. “This is real-world research. Things may differ. I needed to make sure that I was ready to listen carefully throughout the process and take input from all team members.”

Once the research project was underway, Graves and her partners developed creative strategies for managing the needs of different groups. The intervention being evaluated was composed of eight different workshops, so five of the workshop topics were determined by the research team while the participants chose the remaining three. Community researchers completed a research training program in English or Spanish, depending on their preference. Team members discuss challenges they have faced on monthly conference calls and each research site has taken ownership of a participant newsletter, keeping everyone informed.  

Since reaching their recruitment goal, the researchers have focused on following up with participants, Graves said. Working on the project with members of the community has made the research more likely to address their real needs, while raising awareness of the community’s strengths and services, she said.

At the end of her talk, Graves thanked the community partners. “This work is being done by them and with them and I’m honored to be a part of it,” she said.

Kat Zambon
GUMC Communications