Photo by Todd McNaught
Two 59-year-old men might share the same zip code, lifestyle and physician. Yet if one is black and the other white, each man's likelihood of getting prostate cancer - and surviving the disease if diagnosed - is quite different.
Explanations for this and other disease disparities require research studies of diverse populations. That's why the center has enhanced its resources for assisting researchers in recruiting women and ethnic minorities to studies involving human subjects, a requirement of all such government-funded research.
An Internet page with links to community organizations, a new community-outreach staff position and revised forms that will simplify the review process by the committees that approve human-subjects research are among the expanded resources available to center investigators.
The goal is to maximize the potential outcome of cancer treatment and prevention studies.
With an eye toward community collaboration, the center hopes to overcome barriers that have discouraged underserved populations from participating in research studies. Administrators and researchers alike say two factors have hampered recruitment efforts nationwide:
- Historic abuses in biomedical research, such as the syphillis study in Tuskegee, Ala., in which African-American men were denied treatment by the U.S. Public Health Service.
- Economic disparities resulting in health-care inequity.
Requirements for inclusion of women and minorities in clinical trials emerged in the National Institutes of Health Revitalization Act of 1993. It's the charge of the institutional review boards (IRBs) - committees comprised of center researchers and community members that ensure ethical conduct of human-subjects research - to assess whether proposed research studies set and reach required recruitment goals.
To enhance awareness of NIH's recruitment requirements, the center's IRBs recently revised the forms that must accompany human-subjects research proposals.
"Our IRB applications have been revised to mirror what an investigator is required to submit for his or her NIH grant," said Karen Hansen, director of the Institutional Review Office, which oversees the two center IRB committees.
These forms will be required for new IRB submissions as of Jan. 1.
"We're not asking for additional information beyond NIH requirements," Hansen said. "Our intention is that the new documents will make it easier for researchers to address the federal requirements. After reviewing an application, the IRB can then encourage and direct researchers to resources thatcan help them gain more access to underrepresented populations."
A new Internet site directs center researchers to staff who can assist with outreach efforts. The site also houses links to information needed to prepare federal grants and IRB forms, including census and demographic data; cancer and disease statistics; and center and federal documents, forms and regulations. The address is centernet.fhcrc.org/CN/science/minority_portal/.
Staff available to help with outreach
Winona Hauge, a community-outreach manager who in July joined the External Relations department, serves as liaison between underrepresented populations and the center. Hauge is available to collaborate with investigators with open clinical trials who wish to build relationships with community organizations. In addition, she will work with the IRBs to ensure diverse community representation on committees.
Dr. George Counts, senior adviser on special populations for the HIV Vaccine Trials Network, serves as informal adviser for the center as it expands efforts to increase minority participation in treatment and prevention trials for cancer and other diseases. (See story.)
Susan Edmonds and Kristen Woodward, media-relations managers, are available to assist researchers in publicizing open research studies in the media that serve various minority audiences.