Modern technology allows people to access and understand information at a level unprecedented in human history. In medicine, technological advances have been integral to our ability to create therapies, optimize and standardize care, and enable providers to connect with patients in the most remote areas. However, even though much of the country identifies as belonging to a minority group, a disproportionately large majority of clinical research is conducted among white patients.1 Thus, although technology has facilitated the dissemination of information and support, it has not translated into more inclusive and equitable clinical research recruitment and participation.
One of the most important arguments for increasing diversity in research is the need to rebuild trust between the medical system and people belonging to minority groups. Medical research has a history of mistreating—even harming—minority patients, the most well-known example being the Tuskegee syphilis study, in which African-American men were intentionally left untreated for syphilis, despite the availability of effective treatment. This study, among others, left minority patients with an abiding mistrust of the medical system. Despite the establishment of laws to prevent such studies in the future, not enough has been done to restore the trust of minority patients in the medical system. As a result, minority patients are less likely to seek medical help or follow medical advice.2
Interestingly, increasing the proportion of patients from a given minority group included in research has been shown to increase the likelihood that people in that minority group will use and therefore benefit from that therapy. A study from the National Bureau of Economic Research showed that African-American men suffering from hypertension were more likely to use therapy tested in a research population consisting of 15% African-Americans than one tested in a research population consisting of less than 1% African-Americans.3 Increased inclusion of minority groups greatly benefits minority patients and may also represent a step toward restoring trust in the medical system—where earning that trust is an innately human undertaking upon which technological advances have little or no bearing.
Another issue is that clinical research is often undertaken at academic hospitals which tend to recruit participants from their more affluent patient base, while clinical research is less common at community hospitals which tend to serve lower-income communities. Participation in research studies can also be unrealistic for individuals with inflexible jobs and family responsibilities that may not allow time to travel to such programs.4 Individuals who do participate in research typically incur costs that are not reimbursed, such as transportation or parking.5 While technology can allow researchers to conduct patient interviews remotely, important data is gleaned from sources like blood tests and diagnostic and radiologic imaging that must be collected in person. Resolving the socioeconomic inequities present in clinical research recruitment will require researchers who are willing to find ways to improve accessibility and reduce the cost of participation.
In its current state, we can safely assume that medical technology will continue to grow and develop advancements aimed at improving health. However, we cannot assume that these advancements will benefit all groups equally—that is a human side of medical research that we must work to improve.
Reviewed by: Heiley Tai
Graphic by: Jackie No
THE EDITORS. (2018). Clinical Trials Have Far Too Little Racial and Ethnic Diversity. Scientific American, 319(3). https://doi.org/10.1038/scientificamerican0918-10
Hostetter, M., & Klein, S. (2021, January 14). Understanding and ameliorating medical mistrust among black americans. The Commonwealth Fund. https://www.commonwealthfund.org/publications/newsletter-article/2021/jan/medical-mistrust-among-black-americans
Alsan, M., Durvasula, M., Gupta, H., Schwartzstein, J., & Williams, H. (2022). Representation and Extrapolation: Evidence from Clinical Trials. https://doi.org/10.3386/w30575
Rodríguez-Torres, E., González-Pérez, M. M., & Díaz-Pérez, C. (2021). Barriers and facilitators to the participation of subjects in clinical trials: An overview of reviews. Contemporary clinical trials communications, 23, 100829. https://doi.org/10.1016/j.conctc.2021.100829
Mills, E. J., Seely, D., Rachlis, B., Griffith, L., Wu, P., Wilson, K., Ellis, P., & Wright, J. R. (2006). Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors. The Lancet. Oncology, 7(2), 141–148. https://doi.org/10.1016/S1470-2045(06)70576-9