Perceived Advantages and Disadvantages of Clinical Trial Participation Among Minority communities: Results from a cross-sectional survey

Authors: Sharon John,Marley Arnaud, Uyai Ibanga, Destiny Grisby, & Madison Townsend

Institution worked with: University of Houston, Humana Institute

Purpose: Research has shown that clinical trial results and safety may not be inclusive of minority populations (Nazha). The consequences include reduced generalizability of findings that might lead to adverse effects for unrepresented groups. Unrepresented clinical trials not tested with diverse populations could widen the gap within healthcare disparities. However, it is important to acknowledge and address the unethical practices of the past to understand the hesitancy of certain groups’ involvement. There is a need to evaluate the current perception of clinical trial involvement of minority groups and use the results to diversify clinical trial recruitment. This research explores the general population’s perspective on participating in clinical trials and evaluates results by separate racial groups. What are the perceived advantages and disadvantages of participating in clinical trials for minorities?

Methods: The survey represents Black or African American, American Indian or Alaska Native, Hispanic or Latino, and Caucasian participation in the study. The inclusion criteria for participants are adult (18+) and English-speaking. The research study was conducted using an online cross-sectional and gathered a total of 736 respondents.

Results: The data shows the differences in perceived advantages and disadvantages of participating in clinical trials between white, black, and other races. The Caucasian population is 1.7x times more likely than minority groups to consider participating in clinical trials as an advantage. The top three advantages of clinical trial participation for minoritized populations are: "doing something positive for self" with 34% agreement, "getting a cash stipend" with 34%, and doing something that will help others with 28%. The top three disadvantages of clinical trial participation for minoritized populations are: "having to arrange childcare" with 72% agreement, "experiencing side effects of treatment" with 63%, and "disrupting one's normal routine" with 65%.

Conclusion: The collected data provides a detailed insight as to what each racial group and educational groups consider to be the three most prominent advantages and disadvantages of participating in medical research. Tailored outreach by addressing the disadvantages and advantages of participation is necessary for minority populations to build trust within medical research. Progression in clinical trial studies recruitment is vital to accurately reflect the diverse population of the U.S. Researchers could use the data to develop and apply these principles to potentially increase minority population participation in clinical trials and lessen the gap. Without this representation, the health disparities gap will continue to widen as minority groups are not considered potentially leading to increased adverse effects in the generation of new therapies.

Mentors: Many thanks to our mentor Dr. Lauren Gilbert for her support and encouragement in our project work, the committed University of Houston College of Medicine, Humana Integrated Systems Sciences Institute Faculty and Staff including, Dr. Woodard, Dr. Adepoju, Dr. Beech, Dispensary of Hope, and the Community Research Advisory Board (CRAB).