Thomas A. Farrington
President, Prostate Health Education Network (PHEN)
The participation of African American patients in prostate cancer clinical trials rarely reaches the level of statistical significance.
Since this is the U.S. population with the highest incidence and mortality rates for the disease, this level of participation calls into question the results of prostate cancer clinical trials for African American men and all men in general.
Within the medical community, the most widely cited reasons for this low participation are the Tuskegee experiment and the resulting lack of trust in the medical system. The Tuskegee study, where Black men were put into a syphilis experiment for 40 years and denied available treatment, was certainly horrific enough to have a lasting impact. However, are the Tuskegee after-effects truly limiting 2021 cancer clinical trials?
The Prostate Health Education Network (PHEN) focuses on raising clinical trial awareness among African American patients. PHEN’s mission is to eliminate the prostate cancer racial disparity and raise clinical trial participation to statistical significance. We conducted a survey of our network members in early 2021 for a patients’ perspective on clinical trial participation.
Clinical trial awareness
One hundred-and-eight men responded to the survey. 10 percent had participated in a clinical trial before, and 81 percent had not. Of those who had not, 43 percent answered that their reason for not doing so was that they had not been asked. Another 11 percent answered, “I do not know enough about clinical trials’ risks and benefits.” Only 1.8 percent cited Tuskegee as their reason for not participating.
Clearly, the patients’ perspective differs dramatically from the medical community’s regarding why African American participation is so low.
Patient responses to another survey question provide useful insights into what approaches could be effective towards increasing clinical trial participation. We asked, “What would be the most important things for you to consider participating in a clinical trial?” The leading responses were: an effective treatment or diagnostic option for myself (55 percent); minimal potential side effects (45 percent); and to contribute important information to medical science (45 percent). It is certainly expected that patients are most interested in finding trials that are beneficial to them with minimal side effects. However, contrary to being distrustful of the medical community, patients indicate a strong interest in supporting medical science.
I strongly believe that increasing African American patients’ clinical trial participation is achievable and that there are opportunities and paths forward. An understanding and acceptance of the real obstacles as well as discarding long-held myths are imperative. Building trusting and working relationships between the African American patient community and the organizations conducting clinical trials is a must.