Giving a Voice to Research Participants and Their Caretakers

January 27, 2017 - A new effort by the Georgetown-Howard Universities Center for Clinical and Translational Science (GHUCCTS) will help those participating in research studies and their caretakers learn about the clinical research process, offer feedback on participant recruitment strategies and ultimately serve as ambassadors for research in their communities.

The members of the GHUCCTS Research Participant Recruitment Unit Participant Advisory Board met for the first time January 24 at Howard University Hospital where they started a conversation about the best ways to identify potential research participants.

GHUCCTS already has a Community Advisory Board, which includes representatives from local advocacy organizations who facilitate dialogue between GHUCCTS and the community, explained Shaunagh Browning, RN, FNP-BC, nurse manager of the clinical research unit at Georgetown University Medical Center. However, the Community Advisory Board believed it was important for research participants and their caretakers to have their own board  

“There is a movement to include participants in the clinical research process as partners with researchers,” Browning said. “In order to effectively communicate and engage participants, it is important to have the participant voice in the process.”  

The Participant Advisory Board’s mission is “to represent and promote the research participant’s perspective in the planning, implementation, evaluation and dissemination of the clinical research activities” of the GHUCCTS. Finie Richardson, MPH, Participant Advisory Board coordinator at Howard University College of Medicine, encouraged the members of the board to offer their feedback on the mission.

“We’ve crafted a mission statement for the board but it’s up for you to edit and modify,” she said. “You are at the table because we want to hear your voice.”

The Importance of Diversity

Scientists cannot conduct high quality clinical research without recruiting diverse participants to participate in clinical trials, according to Joseph Verbalis, MD, Georgetown’s principal investigator for the Clinical and Translational Science Award (CTSA) that funds GHUCCTS. “When we do clinical trials, we need to make sure all groups are represented,” Verbalis said.

The Participants Advisory Board will consist of ten racially and ethnically diverse current or former participants, as well as family members of current or former participants, of clinical trials conducted at GHUCCTS institutions - Georgetown, Howard, MedStar Health Research Institute and the Washington DC VA Medical Center. The board members are also expected to range in age from teenagers to elderly adults.

Additionally, those board members may be joined by members of the GHUCCTS Recruitment Core who will serve as facilitators or content experts. Members of the Participant Advisory Board are expected to meet once a month and serve on the board for one or two years.

Verbalis described the Participant Advisory Board as not a new initiative but an extension of existing efforts to recruit diverse research participants. “It’s a new focus but not a new area,” he said. “We’re just going about it differently.”

Starting a Dialogue

By learning about the clinical research process including topics such as ethics and informed consent, Participant Advisory Board members will be able to help GHUCCTS researchers recruit study participants, Richardson said. Specifically, the board members can contribute to the development of culturally appropriate recruitment materials and identify potential barriers to participation.

Participant Advisory Board members can also help GHUCCTS set research priorities and promote the value of research participation in their communities, Richardson said. “We want to hear from you - what are your research priorities? What areas interest you?” she said. “You’re an advocate and a voice for the research area that is important to you.”

In their first meeting, the board members discussed the importance of ensuring that research recruitment materials and websites are offered in languages other than English. The board members also expressed excitement about the opportunity to serve.

“I am so honored to have been asked,” one board member said. “I am so psyched to learn all that I can.”

Kat Zambon
GUMC Communications