BY MITCH LESLIE
When oncologist Harlan Pinto and his colleagues were designing a brochure to encourage African-Americans to participate in cancer research studies, they chose a background of kente cloth -- a vividly patterned West African fabric. It conveys a subtle message to an audience that is often suspicious of medicine. "If you are aware of the cloth, the pattern says, 'This is speaking to me,' " explained Pinto, MD, an assistant professor of medicine. "And if you don't recognize the pattern, it's still nice to look at."
Pinto has been investigating how to coax more minorities into cancer research studies. He has put what he learned from focus groups with minority doctors and other research into practice through an outreach program that now includes seven northern and central California hospitals, from Modesto and Fresno to San Luis Obispo. The inviting brochures are just one tool for improving relations with minority doctors and their patients.
Race matters when it comes to cancer. According to data from the National Cancer Institute that cover the years 1990 to 1996, blacks have the highest rate of cancer overall -- 443 cases per 100,000 people, versus 403 per 100,000 people for whites. The frequencies of individual cancers also vary by race. For instance, blacks have the highest rate of prostate and lung cancer, while whites have a higher rate of breast and bladder cancer and of melanoma.
For cancer death rates, the picture looks much the same: blacks are 33 percent more likely to die of cancer than whites and twice as likely to die as Hispanics, Asians and American Indians. Moreover, though they have a lower incidence of breast cancer, black women are more likely to die of the disease than are women of any other race.
A multitude of interacting factors accounts for these differences: genes, diet, lifestyle, income, zipcode, access to preventive care and early detection, availability of treatment. Untangling this knot of possible causes requires that greater numbers of minorities be included in studies. For example, to learn if the higher death rate for African-American women with breast cancer is due to later diagnosis or to some other cause, scientists need enough patients for a fine-grained analysis of subgroups within the population of black women.
Besides promoting more illuminating science, adding more minorities to studies also creates what Pinto calls "technology transfer." That is, minorities who participate in a clinical trial can be sure they are getting at least the current standard treatment -- and they may be getting the future standard.
The racial imbalance in research has shrunk since the 1970s and 1980s, when most cancer clinical trials enrolled almost exclusively middle-class whites, Pinto said. Surveys show that today most treatment studies have roughly the same fraction of African-Americans as the general population. However, prevention trials still fall well short of a representative racial mix, he said.
Although the National Institutes of Health requires that the studies it funds include representative numbers of women and minorities, researchers often have a hard time gathering enough minority patients. To better understand what deters minorities, Pinto and the Eastern Cooperative Oncology Group -- an international organization of oncologists, nurses and other experts involved in cancer research -- convened focus groups for minority doctors. Held at four sites around the country, the focus groups asked the doctors whether they would consider recommending patients for one of four hypothetical treatment trials for breast, colorectal, lung and prostate cancers.
The researchers learned that many patients were suspicious of medical research, fearing that they would be experimented on, and that many minority doctors shared the mistrust. Fresh in the minds of many blacks is the infamous Tuskegee experiment, conducted at a hospital in Alabama beginning in the 1930s. Black men with syphilis received no treatment so that doctors could study the course of the disease. However, mistrust and fears of abuse predate Tuskegee, Pinto noted.
Another hurdle is the perception that the large medical centers that conduct most research discriminate against minority patients and doctors. Whether or not this kind of bias exists is beside the point, Pinto said. Since many minority doctors and patients believe that it does, a recruitment program can't succeed without addressing the perception.
These doctors also felt they weren't receiving enough information from the researchers at the large medical centers about what kinds of trials were available.
Overall, Pinto and colleagues concluded that doctors in large medical centers need to work more closely with community physicians and do a better job of educating minority doctors and their patients. They published their findings in the March 1999 issue of the Journal of Clinical Oncology.
The outreach program and the patient-friendly brochure were direct outgrowths of the study's conclusions. The brochure addressed some of the fears African-Americans have about participating in medical research.
What he and his colleagues learned
applies to all clinical trials, Pinto said, because many of the
suspicions that keep minorities away from clinical research are
widespread in the population at large. For example, many veterans
are wary of government studies because of Cold War radiation
experiments that exposed thousands of servicemen to atomic blasts.
SR