Some groups are underrepresented in rheumatology research. That’s cause for alarm.
Written on October 5, 2015 by Dr Ben Nowell
As recent events have shown, racism and inequality are not relics of the past. These concerns are very much with us today and have been highlighted by media attention to racial disparities in police brutality. Although the topic of healthcare disparities doesn’t attract the same intense media spotlight, racial inequality in health outcomes is real and persistent—sometimes with deadly consequences.
Racial disparities in healthcare are well documented. Specifically, higher disease prevalence and burden, and worse symptom manifestation and treatment have been observed among African American and Latino patients compared to Caucasian patients (1). Differences between racial groups have been observed among individuals with rheumatoid arthritis (RA), with African American RA patients reporting greater disability and worse pain scores and global health status than both Caucasian and Latino patients (2). Such differences are not fully explained by unequal education and socioeconomic status. In fact, there is evidence that living in a racist society is inherently damaging to people’s health, especially to those who are members of historically oppressed racial groups (3, 4).
Unfortunately, people of color are underrepresented in health research—the information that only such patients can provide is missing or incomplete. There are at least two reasons to be alarmed by this. First, a lack of representation or “voice” in research affects the “generalizability” of results. Generalizability refers to the extent to which research findings and conclusions from a study conducted on a sample population can be applied to the population at large. In other words, if studies do not include people from diverse backgrounds, then results of the studies may not be relevant to them. Consider a gender-based example of underrepresentation in heart disease research. For many years, cardiovascular studies and clinical trials failed to include adequate numbers of women. As a result, study conclusions were not necessarily generalizable to women (5). Such lack of data can be life-threatening because different groups may respond differently to medications. Take the heart medication digoxin, for example. The drug was found to increase the risk of death among women, but not men (6). Without an adequate sample of women participating in research, this critical difference would have gone unobserved.
A second reason to be worried about the underrepresentation of African American, Latino and Asian-American patients in research is that it’s a “canary in the coalmine” for unequal access and treatment. Lack of representation in research may be a manifestation of the barriers people face to obtaining quality health care in general. Robert Wong, M.D., resident physician at California Pacific Medical Center in San Francisco, says, “The cohorts that are being left out of clinical trials are also the ones who generally receive suboptimal care. So the ones who need optimal care the most are the ones at greatest risk of being excluded” (7). People of color are less likely than whites to have health insurance and therefore have less access to medical facilities and opportunities for research participation—especially phase III clinical trials from which they may derive some benefit (8, 9).
There are many reasons people of color are underrepresented in research. Reasons typically fall into the following three categories: awareness, access, and acceptance (7, 9, 10).
- Patients and their community-based physicians may lack information about research opportunities
- Information about research opportunities may be shared in a manner that is neither attractive nor culturally appropriate for people of diverse race/ethnic identities
- Logistical barriers—like transportation, child care and/or elder care, phone/email access, familiarity with technology, time required, or the inability to take time off work—may make it impossible to participate
- Outsider status of research institutions and researchers themselves—lack of familiarity with a community’s cultural values and communication style—may inhibit interaction with potential study participants
- Communication issues—like surveys or research materials in native language or materials not presented in accessible way—can make participation difficult
- Researchers or physicians and other providers may purposely or inadvertently restrict recruitment to certain groups of patients
- General lack of trust in the health care system and especially in clinical research (e.g., as a result of historical transgressions like the Tuskegee Syphilis Study) impedes participation
- Lack of acceptance of the randomization process (which means the potential for receiving a placebo rather than treatment) may discourage participation
With the launch of the new Arthritis Power research network, we are encountering some of the same challenges. The majority (about 85%) of the nearly 1,700 people who have joined the network are white. We are thrilled that so many have signed up already using the early access version. At the same time we want to ensure that everyone with RA and other rheumatologic conditions is well represented in upcoming patient-centered studies. Please consider joining if you haven’t already done so. How can we make sure that everyone’s voice is heard in our research and recruitment efforts? Please share your experience and suggestions in the comments section below.
(1) Nelson, A. R., Smedley, B. D., & Stith, A. Y. (Eds.). (2002). Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (full printed version). National Academies Press.
(2) Bruce, B., Fries, J. F., & Murtagh, K. N. (2007). Health status disparities in ethnic minority patients with rheumatoid arthritis: a cross-sectional study. The Journal of rheumatology, 34(7), 1475-1479.
(3) Jackson, J. S., Knight, K. M., & Rafferty, J. A. (2010). Race and unhealthy behaviors: chronic stress, the HPA axis, and physical and mental health disparities over the life course. American Journal of Public Health, 100(5), 933-939.
(4) Pachter, L. M., & Coll, C. G. (2009). Racism and child health: a review of the literature and future directions. Journal of developmental and behavioral pediatrics: JDBP, 30(3), 255.
(5) Melloni, C., Berger, J. S., Wang, T. Y., Gunes, F., Stebbins, A., Pieper, K. S., & Newby, L. K. (2010). Representation of women in randomized clinical trials of cardiovascular disease prevention. Circulation: Cardiovascular Quality and Outcomes, 3(2), 135-142.
(6) Rathore, S. S., Wang, Y., & Krumholz, H. M. (2002). Sex-based differences in the effect of digoxin for the treatment of heart failure. New England Journal of Medicine, 347(18), 1403-1411.
(7) Friedman, E. (2009, 11/30). Supporting diversity in research participation: A framework for action. The California Institute for Regenerative Medicine (CIRM). Retrieved from https://www.cirm.ca.gov/
(8) Swanson, G. M., & Ward, A. J. (1995). Recruiting minorities into clinical trials toward a participant-friendly system. Journal of the National Cancer Institute, 87(23), 1747-1759.
(9) Fisher, J. A., & Kalbaugh, C. A. (2011). Challenging assumptions about minority participation in US clinical research. American journal of public health,101(12), 2217.
(10) Ford, J. G., Howerton, M. W., Lai, G. Y., Gary, T. L., Bolen, S., Gibbons, M. C., Tilburt, J., Baffi, C., Tanpitukpongse, T.P., Wilson, R.F., Powe, N.R., & Bass, E. B. (2008). Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review. Cancer, 112(2), 228-242.