Increasing minority participation in clinical trials

Clinical research studies can offer access to innovative therapy for cancer, but African American participation rates in these studies are among the lowest. Public Health Television (PHTV), in partnership with the Case Comprehensive Cancer Center in Cleveland, Ohio, is conducting research to increase access to cancer clinical trials among low-income African Americans. As a first step, 12 focus groups were conducted with low-income African American men and women, to identify their perceptions toward  participation in clinical trials. A related goal was to make the focus groups a “participatory learning experience.” To this end, participants were shown video clips and provided with detailed information on different phases of cancer research, asked to assimilate and discuss this information, and prompted for their impressions of the value of this information and dialogue.
Two groups of men and two groups of women (each with 6-8 participants) met three times over several weeks over the course of this research. During their first meeting, participants speculated that African Americans did not actively seek participation in clinical trials for a host of different reasons. One key reason revolved around issues of trust and respect.  Many participants expressed a strong fear that because they were sick and poor, low-income African Americans with cancer would be seen by some health care professionals as not deserving of respect or quality health care. Participants also felt that African Americans’ access to clinical trials was limited due to financial and social considerations, including the perceived need “to keep your business private.” Many participants said that they had difficulty accepting that a clinical trial could be a viable treatment option, rather than a means to exploit individuals who did not, because of financial or other reasons, have other realistic options for accessing treatment.
In the second meeting, participants showed strong interest in a video clip summarizing the different phases of clinical cancer research. Many participants expressed surprise at learning that not all kinds of cancer research were the same, and that more advanced (Phase III and IV) research often included standard-of-care treatment. By the end of the third meeting, participants agreed that the process of learning more about and discussing cancer research had allayed some important concerns, particularly the idea that cancer research subjects were simply guinea pigs. However, concerns about the potential exploitation for research purposes of low-income African Americans remained strong.
These preliminary findings suggest that lack of accurate knowledge, confidence jn the information obtained, and trust in cancer research may be high among low-income African Americans. Strong interest in learning about and debating the risks and benefits of clinical trial participation may also be a factor. Given the opportunity to learn more and grapple with different elements of clinical research, minorities with historical reason to fear or mistrust researchers may grow more accepting of the potential benefits of participating in clinical research. For health researchers, this work also demonstrates that focus groups are not just useful for extracting data, but also for disseminating information, triggering dialogue, and building rapport among underserved research populations.