A new effort by Georgetown and Howard University will help research study participants 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.
Established in January as part of the Georgetown- Howard Universities Center for Clinical and Translational Science (GHUCCTS), 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.
“There is a movement to include participants in the clinical research process as partners with researchers,” explains Shaunagh Browning, RN, nurse manager of the clinical research unit at Georgetown University Medical Center. “In order to effectively communicate and engage participants, it is important to have the participant voice in the process.”
Scientists cannot conduct high-quality clinical research without recruiting diverse participants to participate in clinical trials, says Joseph Verbalis, MD, Georgetown’s principal investigator for the Clinical and Translational Science Award that funds GHUCCTS. “When we do clinical trials, we need to make sure all groups are represented,” he adds.
The group will consist of 10 current or former clinical trial participants or family members of participants, representing a diversity of cultural and racial backgrounds as well as ages. Members will meet monthly and serve on the board for one or two years.
During their tenure, they will learn about the clinical research process including such topics as ethics and informed consent. Board members will contribute to the development of culturally appropriate recruitment materials as they work to identify potential barriers to participation. They will help set research priorities for GHUCCTS, and promote the value of research participation in their communities.