Overcoming Barriers to African American Participation in Research

    • September 30, 2008

The Problem: The National Institutes of Health Revitalization Act of 1993 mandated that investigators working with human subjects actively recruit women and minority participants into clinical research studies. However, there were no established guidelines on how to meet this mandate, and no data to show how investigators' attitudes and beliefs could impact their ability to recruit underrepresented participants.

Grantee Background: Giselle Corbie-Smith watched her mother go to work every day as a nurse at a small, private hospital in New York, but she balked when her mother pointed out that because she was adept at science and math, she would probably do well in medicine. "Your mom tells you to do something, you do the opposite," she recalls. "I said, 'No, I don't want to.'" But her mother gently encouraged Corbie-Smith to work with a hospital administrator, and see the medical world through a fresh set of eyes. The administrator turned out to be Corbie-Smith's first professional mentor: "Through interacting with her, I decided, 'Yes, I probably will go into medicine.'"

After earning her medical degree from the Albert Einstein College of Medicine in New York, Corbie-Smith did her residency in internal medicine at Yale University School of Medicine and then served as chief resident at Yale-New Haven Hospital from 1994 to 1995. A special seminar there for chief residents on clinical epidemiology drew her immediately to the field. "It's hard to explain, when you find the thing that sort of reveals itself as where you need to be," she says. "I'm a pretty spiritual person. I believe that everyone is here for a reason. It made sense to me, to what I wanted to do."

As a chief resident, she started to ask questions about how vulnerable populations were cared for in academic health care centers. She then read an article on vulnerable populations by Nicole Lurie, PhD (who later served as principal deputy assistant of the U.S. Department of Health and Human Services from 1998–2001). "That was the 'aha moment' of what I was supposed to do—vulnerable and minority populations," Corbie-Smith recalls. "The way Nicky wrote about the health of the underserved fit with my way of thinking about service and research and how it can be one and the same. In morning reports and during my residency, I thought that there was something about the doctor-patient interaction, that the most vulnerable patients were not receiving similar or equitable care in the way our health system was constructed."

During her chief residency at Yale, Corbie-Smith conducted a small pilot project on doctor-patient communication under the guidance of Ralph I. Horowitz, MD, a former Chair of the Department of Medicine at Yale Medical School. But when she decided to pursue a master's degree in clinical research at Emory University's Department of Epidemiology, colleagues initially tried to discourage her because, she says, they thought it was "too hard to look at that interaction." She did not back down.

Corbie-Smith received a small grant to look at patient perspective on inclusion in research just as the National Institutes of Health (NIH) began seriously talking about minority inclusion in scholarly research. In 1999, Corbie-Smith received a grant from the National Heart, Lung, Blood Institute (NHLBI) to serve as principal investigator on a study about barriers to African-American participation in research. A year later, Corbie-Smith joined the University of North Carolina at Chapel Hill as an assistant professor in the departments of social medicine and medicine.

That same year she was also named a Robert Wood Johnson Foundation Harold Amos Medical Faculty Development scholar. Her research topic—overcoming barriers to African-American participation in research—mirrored years of dedication and passion. But instead of looking at the issue from patients' perspective, Corbie-Smith focused on the investigators' side. "I said, 'There are two sides to this issue,' and the investigators have as much responsibility as the participants in this,'" she explains.

One of the goals of her study was to design interventions to increase minority participation in research. She has published more than 20 articles about the topic, during and after her Harold Amos fellowship, and used the study's findings to help establish best practices for investigators' recruitment of African Americans for research. She still chokes up thinking of how much the Harold Amos program has meant to her. "It's not just about the research and their support of me as an investigator. It's about the network of people you work with for those four years. The annual meeting was one meeting I looked forward to—to get to hear the amazing things that other people are doing and to be awed that I was asked to be a part of that group."

RWJF Perspective: The Harold Amos Program is one of RWJF's oldest programs, having started in 1983 as the Minority Faculty Development Program. It was renamed in 2004 to honor the first African American to chair a department at Harvard Medical School; he was also a former director of the program. The program provides four-year postdoctoral research awards to historically disadvantaged physicians who are committed to developing careers in academic medicine.

"One of the assumptions of the program," says J.A. Grisso, MD, MSc, a senior program officer at RWJF, "is that if you give leadership opportunities to individuals from underrepresented and disadvantaged groups that they, in their career trajectories, are more likely to take on the issues that are particularly important to vulnerable populations. That has been true for the Harold Amos Faculty Development Program. Individuals who could be outstanding scholars in any world and for any issue have very often chosen to address these important issues that we care about at RWJF.

"This is a long-standing program that is very forward-thinking," says Grisso. "It has uniquely engaged individuals who do basic science research as well as those who do health services research and clinical research. People who are completely basic science-oriented are now getting trained in or exposed to epidemiology and public health and then are starting to talk about the social issues as they might affect biological systems. They are asking questions that are unique in my experience with basic science."

Giselle Corbie-Smith

Giselle Corbie-Smith
Harold Amos Medical Faculty Development scholar