"For years, African-Americans have been underrepresented in research," said lead investigator Linda Cottler, Ph.D., M.P.H., chair of the department of epidemiology at the University of Florida College of Public Health and Health Professions and the College of Medicine. "Reasons have included mistrust of the medical community and actually not ever being asked to participate in research. Our study shows that while the participation rate among African-Americans has been very low, their level of interest in research is high. This is exciting news and may reflect the influence of the community engagement programs of the National Institutes of Health's Clinical and Translational Science Awards."
More than 80,000 clinical trials are conducted each year in the United States, yet less than 2 percent of the population participates in them. Women, the elderly, racial and ethnic minorities and rural residents are often underrepresented.
"If we're not getting the participation of diverse groups when we're studying medications or interventions, then we don't know how those treatments will work in real life in different populations," said Cottler, associate dean for research and planning at the College of Public Health and Health Professions and co-director of community engagement for UF's Clinical and Translational Science Institute. "It's very important for people to have a voice and be represented."
The new study was designed to learn the health concerns and research perceptions among underrepresented groups with the goal of improving inclusiveness and relevance of health research. The study was conducted by five universities that are recipients of Clinical and Translational Science Awards: Washington University in St. Louis; the University of California, Davis in Davis, Calif.; the University of Michigan in Ann Arbor, Mich.; Albert Einstein College of Medicine of Yeshiva University in New York City; and the University of Rochester in Rochester, N.Y. Community health workers in those cities interviewed adults at local gathering spots, such as barbershops, parks, bus stops, churches, grocery stores, laundromats and health fairs.
Among the 5,979 people interviewed, the top five health concerns were high blood pressure, diabetes, cancer, weight and heart problems. Safety and crime were two of the highest-ranked neighborhood concerns.
When asked about their overall interest in medical research, 91 percent of African-Americans expressed an interest in participating compared with 85.5 percent of whites, 84.5 percent of Hispanics and 79 percent of Asians. African-Americans were more likely than other racial groups to express a willingness to participate in research even when it may involve providing blood or genetic samples, granting access to medical records or staying overnight in the hospital.
"This is a groundbreaking study that demonstrates that members of minority communities are interested in research, especially around the diseases and risk factors that are most common in their families and communities," said Lloyd Michener, M.D., chair of the department of community and family medicine at the Duke University School of Medicine, which was not involved in the study. "As many traditional studies struggle with recruitment, this study suggests that the problem may lie with the lack of awareness of researchers with the methods of community engagement, rather than lack of interest or willingness to engage in research among members of these communities."
The five universities involved in the current study, along with the University of Florida, are now focused on a new study that aims to better understand outcomes of community engagement programs.
There are many barriers to participating in medical research, and not just for minorities, Cottler said, such as the time of day of required study visits and navigating university campuses. HealthStreet, a community engagement program Cottler founded in St. Louis and Gainesville, Fla., seeks to reduce disparities in health care and improve access to research studies among people who are medically underserved by meeting people out in the community and linking them to services and research opportunities.
"We're trying to do studies in the community so that it's much easier for people to participate," Cottler said. "We are bringing the research to the community instead of bringing the community to the research."
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