It is known that biological differences exist in how people respond to certain therapies. Variations can make drugs less effective for certain populations. There’s no question that a clinical trial that includes ethnically diverse participants will better represent the population who experiences the disease. In fact, we’ve created a video to explain why diverse clinical research participation is so important, and I was part of a recent research collaboration to examine this in greater depth.
CSL partnered with CliniSpan Health to survey 500 African American adults across generations about the issues surrounding health care and participation in clinical trials. CSL is a global biotech that makes medicines for rare and serious diseases, as well as vaccines. CliniSpan, based in North Carolina, is an organization that’s dedicated to improving access to clinical trials among under-represented communities.
Participating in clinical trials can give people early access to the newest medicines available, which can be invaluable for those in search of an effective treatment. However, African Americans are the most under-represented demographic group in clinical trials at 5%, despite having a disproportionate disease burden for certain diseases. Three times as many African American participants should be enrolled in pivotal trials each year to achieve accurate representation related to disease prevalence and population census figures, according to research from The Tufts Center for the Study of Drug Development.
Past ethical abuses, such as those that occurred in the United States at the Tuskegee Institute, are often cited by industry as the predominant reason African American patients decline to participate in research. With greater safeguards in place for study participants, our research group had some doubts that abuses such as the Tuskegee syphilis study remained a top participation hinderance for African American community members across generations. That turned out to be correct.
Here are five takeaways from the survey, conducted in 2023, in the United States:
1. Most survey respondents said that lingering mistrust in research professionals, stemming from the Tuskegee Institute’s mistreatment and abuse of African Americans was not a predominant reason keeping them from participating in clinical research.
More often they cited a lack of knowledge about clinical trial opportunities – likely compounded by the fact that they prefer to get information through social media channels. As we wrote in our research summary, most respondents did not know where to go to participate in a clinical trial or what participating in a clinical trial entailed.
We also found that engaging potential participants on social media is an important step toward making clinical trials and health care more accessible for African American communities.
2. About half said they didn’t fully trust the health care system and most said that African American patients have been treated differently than other races at medical centers.
People ages 24-39 (Millennials) reported the highest level of trust in the health care system and older survey respondents who are 40-55 years of age (Generation X) reported the lowest. Across all age groups, a majority of respondents said African American patients have been treated differently than other races at medical centers, with older people being most likely to say so. They cited racial discrimination and lack of resources as main reasons for the mistreatment among African American patients.
3. Some patients prefer to be treated by African American doctors and health care staff.
About 20%-25% of survey participants expressed a preference for African American medical staff and almost all (90%) trust African American doctors and reported excellent experiences with their care. As we wrote in our findings, respondents told us in interviews that African American physicians give treatment willingly without discrimination, tend to be more interactive and welcoming and “give off the feeling they want me there.”
We concluded that increasing the number of African American physicians in primary and specialty care, as well as the number of African American clinical research staff at sites, could have a positive impact to eliminate participation disparity. Based on the survey answers, that could prompt more African American patients to seek out health care, to take preventive health care measures and to consider participating in clinical trials.
4. Pharmaceutical companies should up their game in how they communicate clinical trial opportunities, which means more advertising on social media.
Survey respondents said they preferred social media as an information channel – Facebook for older patients and TikTok for younger ones. But it may be even more impactful to give trusted doctors high-quality communication materials about clinical trial opportunities that they could share with patients. We recommended that companies work with physicians to co-develop digital and printed one-pagers that give them the information they need to quickly evaluate clinical trials for their patients.
5. In future, this area of research should go deeper into the community to find a broader mix of survey participants.
This research project used a CliniSpan database, which had geographic limitations and may have been skewed toward people who were both tech savvy and already had an interest in personal health. New studies could tap more deeply into local communities by canvassing people at local community centers, libraries, restaurants, gyms, hair salons and barbershops.
You can learn more about this research in Applied Clinical Trials, where it will be published this month.