Creating a Blueprint for Diversity in Clinical Research
Engaging a diverse community in clinical research trials has long been a challenge for investigators: while African Americans represent 12 percent of the U.S. population, they make up only five percent of clinical trial participants. At the same time, Latinos comprise 16 percent of the population, but only one percent of clinical trial participants.
Researchers continually seek to recruit and retain members of minority groups for trials so that their results can reflect the experiences and needs of those groups, and ultimately aid in developing interventions and treatments that will benefit the specific needs of these communities. It has also been noted that developing trust within minority communities can advance the health of these populations.
Seeking to address the need for increased minority participation in clinical research, YCCI created the Cultural Ambassadors program in 2011. The program is a collaborative partnership with the African Methodist Episcopal Zion (AME Zion) Church and Junta for Progressive Action. The Cultural Ambassadors program educates and engages leaders of New Haven’s African American and Latino populations by involving them in study design; the creation and translation of culturally sensitive recruitment materials; direct subject recruitment; and dissemination of results.
The program has gone from strength to strength in the past seven years. Over the past two years, minority participation in studies in which Cultural Ambassadors have been engaged, has not been lower than 12 percent, with an average minority participation ranging between 20 and 65 percent. Minority participation in research has been particularly important at Yale, as the City of New Haven’s population is 27 percent Latino and 33 percent African American.
The African American community is plagued by myths and misconceptions about clinical research that impede participation in clinical trials. … There is an opportunity here to embed knowledge and attitudinal shifts within the educational process that has the potential for far-reaching effects.
The program has been such a success at Yale that YCCI has begun work to expand the Cultural Ambassadors program to the Duke University CTSA hub. In this new initiative, YCCI builds upon the lessons learned from the implementation of Yale’s Cultural Ambassadors program with the goal of creating a blueprint for easy transfer of the program to other sites. Leaders from the Yale program are helping to train AME representatives in North Carolina to play a similar role at Duke, where they will help minority communities to better understand clinical trials and the benefits of participating in them.
AME Zion, based in Charlotte, North Carolina, is a large religious denomination and one of the oldest African American congregations in the United States. Nationally, the church has congregations in all but four of the states with CTSAs. Duke, located in Durham, North Carolina, is a natural choice for the first setting to transfer the Yale program model to another CTSA, with the potential of other sites to follow in other areas with AME Zion participation. Following implementation of the program at Duke going forward, any site, regardless of prevalent diseases in the area or the types of studies local researchers would be interested in pursuing, would already have a blueprint for successfully implementing the program, and would be able to build upon relationships and sustain them for future studies.
The AME Zion Church in North Carolina is also considering a collaboration with Yale that would incorporate teaching the benefits of clinical research in its curriculum. “AME Zion is a ministry with a special focus on health,” says the Reverend Dr. Daran Mitchell of the North Carolina AME Zion Church. “The African American community is plagued by myths and misconceptions about clinical research that impede participation in clinical trials. I am anxious to pare down those barriers so that research more accurately reflects those who may benefit from its findings. There is an opportunity here to embed knowledge and attitudinal shifts within the educational process that has the potential for far-reaching effects.”
Junta for Progressive Action is the oldest Latino community-based nonprofit in New Haven, and provides services and advocacy to improve the lives of Latino people in the area. As Cultural Ambassadors, Junta representatives translate the program’s brochures, forms, and study materials into Spanish, and are also available as interpreters for researchers.
While Junta works only locally, its Cultural Ambassadors could provide leadership gained from its extensive experience working with Yale since the program’s inception as the program expands to other areas. “Junta representatives have benefitted tremendously from learning directly from researchers about developments in research and clinical trials,” says Sandra Trevino, LCSW, former Executive Director of Junta, and a Cultural Ambassador. “Our partnership has shown me that our needs matter and our voices are heard.”
YCCI continues to build on the strength of the Cultural Ambassadors program at Yale and beyond with the long-term goal of building a national framework for recruiting and retaining members of minority communities in clinical research that will ultimately benefit both the research and the people who participate in clinical trials.
This article was submitted by Lisa Brophy on December 4, 2017.