Black women are willing to sign up for clinical trials for a number of health issues, but researchers need to solicit their participation and assure them that they are interested in the women and the outcomes for their community -- not just looking for black people to balance out their studies.

“There is a deficit of research because there is a deficit of hearing from the black community,” V. Diane Woods, coordinator for the San Bernardino County (Calif.) African-American Health Initiative, told a workshop at the 2007 Minority Women’s Health Summit in Washington, D.C.

“'Are you here for the long haul?' You’ll hear that all the time. There needs to be time to sit with people and talk with them, if you’re talking about coming from an African-centered approach,” Woods said.

Last week’s summit was designed to come up with strategies to address health disparities among American women of color.

“The goal of this Summit is to focus on the often unrecognized threats to health experienced by women of color, by one, building on knowledge gained in previous conferences and identifying distinct health issues disproportionately impacting minority women, and two, highlighting successful models of health promotion and prevention,” Wanda K. Jones, deputy assistant secretary for health for the U.S. Department of Health and Human Services, said in a welcome letter to participants from the health community.

Medical data has shown that black women suffer disproportionately from a number of health problems, particularly heart disease and breast cancer, but not enough research has included black women to allow researchers to determine the causes and, more importantly, possible cures.

On Saturday, Woods and several researchers presented research papers at a workshop addressing why women of color, particularly black women, should participate in clinical trials and the barriers that have prevented them from doing so previously.

Renee Carter, senior fellow and medical advisor for the National Research Center for Women and Families, said that there is a major trust issue that prevents many black people from participating in clinical studies.

Primarily, she said, was a fear of exploitation, either that they would be left to languish, untreated for certain disease, or abandoned by researchers who only wanted to use participants to enhance their studies.

Additionally, she said, her research showed that black people believed “we’re gambling with their health, and they were being treated as guinea pigs, that research trials were biased and were preferring whites over blacks” in determining who gets proper treatment.

Carter said 85 percent of the people surveyed in her research were unaware clinical trials could be part of their treatment options for various ailments and that they could get free medications.

Logistical issues also limit participation by black women, many of whom had transportation, child or elder care issues, as well as cultural or religious beliefs about health care.

HHS, the National Institutes of Health and the Centers for Disease Control have enacted regulations to ensure that research participants are protected from unethical behavior and to ensure that black people are properly represented in studies, Carter said.

Most studies, particularly research on various medications, largely focus on white men. Because women and people of color are not adequately represented in many of these studies, she said, “there is no indication of the difference of effects on women or women of color.”

The CDC’s policies, Carter said, are especially focused on studying underrepresented groups.

“The difference between the CDC and NIH,” Carter said, “is that the CDC offers solutions for low participation rates. CDC policy presents almost a holistic approach.”

Researchers should also realize that health care providers are not always supportive of research and, in some instances, advise their patients against participating in clinical trials. Sometimes, physicians do not keep up with the latest research and are unaware that there are trials that may help some of their patients and that pharmaceutical companies, which many assume are interesting in pulling in research participants for their products, often want to target larger pools of patients from doctors directly, said Layla B. Baker, from the MPH Indiana Minority Health Coalition.

Baker said the coalition, which was founded in 1992 to address disparities between minority and white populations, learned that researchers should keep presentations to community organizations simple and tailor them very specifically. In addressing community groups, the response was better when the information addressed their particular health issues and racial or ethnic groups.

Woods and Olivia Swift-Ford, one of her research partners from Loma Linda University in California, said their study to determine how to get black women more involved in clinical and prevention research revealed that one of the primary reasons women had not participated in the past was they had never been asked. The researchers discovered that after education and community outreach, the number of people willing to participate in clinical studies increased dramatically.

“Women want to participate, but they need to be asked,” Swift-Ford said. “That’s just the bottom line. Not one of the women I talked to had talked to their physicians about clinical trials. I tell them. 'You need to be aggressive about your care, and you need to talk to your physician.'”

Further, even though some clinical studies provide some monetary incentive to pull in participants, the researchers found that most black people weren’t in it for the money.

They were interested in prevention, quality of life, trying to keep their families from developing the same health problems and in working with researchers who had a vested interest in their health outcomes.

“People want to participate if they felt the researcher was really, truly interested in them,” Woods said.

Prospective subjects are clear, Swift-Ford said, and often tell researchers point blank: “We don’t want people who are going to come in and use us, and then we’re never going to hear from them again.”