Abstract: Formative Research to Design Culturally-Sensitive Messages about Clinical Trials and Health Registries for Young African Americans

◆ Aurora Occa, University of Kentucky
◆ Diane Francis, University of Kentucky
◆ Adriane Grumbein, University of Kentucky

African Americans are underrepresented in clinical research (US FDA, 2017). This underrepresentation has dramatic consequences, ranging from researchers' limited ability to generalize the findings to the failure of the healthcare system to provide equitable care (Branson, Davis, & Butler, 2007; George, Duran, & Norris, 2014). More African Americans need to participate, but lack of information and knowledge, misperceptions, and fear prevent many from enrolling in clinical research (Kim, Tanner, Friedman, Foster, & Bergeron, 2015).
Health registries are valuable resources to identify potential participants and may help to bridge participants with open clinical trials (Flood-Grady et al., 2017). To enroll in a health registry, individuals need to complete a questionnaire. While health registries have shown to have the potential to simplify clinical trial enrollment and to collect preliminary health data, they also struggle to engage underrepresented individuals such as African Americans.
The present study aimed (1) to investigate young African Americans' attitudes and knowledge of health registries and clinical trials, and (2) to explore their perceptions about current messages used to recruit participants into health registries. To this purpose, five focus groups were conducted with twenty young African American adults. Participants’ mean age was 20 years old, ranging from 18 to 22. The majority of participants were females (n = 15, 75%), not working in a health-related profession (n = 14, 70%), and who had never participated in a clinical trial (n = 18, 90%) nor in a health research study (n = 13, 65%). All the focus groups were moderated by the same researcher and the same note-taker, to ensure consistency. The transcripts were analyzed using thematic analysis (Braun & Clark, 2006).
We found young African Americans have a superficial knowledge of clinical trials. They recognize that clinical trials are important for patients looking for a cure, but they also worry about possible side effects. “I feel like it could go both ways, either positive or negative, depending on if something bad happens to the person, like a reaction, or positive, finding a cure.”
Participants identified the lack of alternative cures as a reason to participate in clinical trials or medical research studies. They also indicated the lack of a clear benefit as reasons not to participate. “I've seen on TV shows, oh well, they're doing a trial for the cure of cancer, and someone's really desperate […] but other than that, I don't really see any benefits.”
Almost all of the participants had never heard about the existence of health registries, nor they knew what their purpose was. When watching or reading messages about health registries, participants identified some concepts they found obscure and also several changes that should be made to current messages to make health registries more attractive. “It still says it focuses on people's lives so it's not just strictly towards you, it's towards other people. It's like they're using you for other people.” Future directions on how to create culturally-sensitive messages for young African Americans about clinical trials and health registries are identified and discussed.