Increasing Participation in Lupus Clinical Trials in Black Women: Tackling Racism Through Communication and Community Engagement

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Systemic lupus erythematosus (SLE) is a complex autoimmune disease that disproportionately affects black people. The disease has been found to be more common and more severe in people of African descent1, with black patients, especially women, accumulating more disease-related damage than white patients with lupus.2 Despite this, only a few SLE clinical trials included black participants. . Blacks have been estimated to account for 43% of SLE cases, but only 14% of trial participants.3

There have been few investigations into the factors that impact clinical trial participation in black people with SLE. To address this issue, our research team recently conducted a study to understand factors impacting clinical trial participation in this population.4 In our study, 42 black women with SLE and / or caregivers participated in 4 focus groups held in Boston and Chicago to understand the barriers and facilitators of clinical trial participation in black women with SLE.

Concept of Critical Race Theory (CRT)

We approached the research question using the CRT, a theoretical framework that has recently received much media attention for its use in understanding the impact of racism on public policy. The theory, which emerged in the early 1970s, has a few main concepts, namely that race is primarily a social construct rather than a biological one; and non-white people are chronically exposed to racism through their daily interactions, as well as through broader systems and policies. Critical Race Theory has been used to understand the links between racism and racial disparities in homeownership, educational attainment, and criminal justice policy. In recent years, public health practitioners have embraced this framework as well as a means of understanding the impact of racism on health care. The Public Health Critical Race Praxis (PHCRP) was developed as a version of CRT that enables public health practitioners to view racism as a root cause of racial and ethnic disparities in health outcomes.5

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We used the PHCRP to reflect on racism as a predictor of clinical trial participation in black women with SLE. Participants were specifically asked to reflect on their own experiences with racism within their SLE care and in healthcare in general. We have taken care to center the needs of black women in our work. Black women led the focus groups, and we deliberately asked our research participants how their unique identity as both black and female might impact their interactions with the health system.4

Rodlescia S. Sneed, PhD, MPH, is Assistant Professor in the Department of Family Medicine in the Division of Public Health at Michigan State University. Racism in health systems

We have observed a lot of conversations about racism in health care. Participants spoke about several historical examples of racism, highlighting the Tuskegee Syphilis Study and the story of Henrietta Lacks (a black woman whose cancer cells were harvested for research without consent).

However, conversations about racism in healthcare weren’t just historic. Several participants spoke of current day-to-day experiences with racism in health care. For example, there is a large body of research documenting racial disparities in the clinical management of pain. Black patients are prescribed pain relievers at lower rates than white patients.6 A 2016 study found that white medical interns often have false beliefs about the biological differences between black and white individuals that may contribute to the racial disparities in the assessment and treatment of pain.7 These issues emerged in our focus group work. A focus group participant mentioned racial bias in her treatment of pain, suggesting that doctors often viewed pain reports from black patients simply as drug-seeking behavior.8 Therefore, this perceived racial bias leads to future mistrust of physicians in daily interactions.

In an effort to increase black participation in clinical trials for SLE, many researchers have deliberately engaged in outreach activities in African American communities. However, such awareness can make matters worse in terms of trust, as black patients often question doctors’ motives. Since clinical trials typically involve new and active treatments, some focus group participants in our study were concerned that the recruitment of black patients into clinical trials was based on racially motivated desires to use black individuals as guinea pigs for risky experiments.4

Strategies for Improving Trial Participation in Black Patients with SLE

So, given the level of skepticism that exists between black patients and the healthcare system, how can we increase participation in SLE clinical trials in black patients?

We’ve learned that black women with SLE often don’t trust the healthcare system enough to participate in clinical trials. Thus, increasing trust is essential to increase participation. But building trust doesn’t happen overnight, and it doesn’t start when our research grants are funded. Trust requires continuous and transparent communication. Black patients with SLE want researchers to demonstrate their willingness to talk to black patients about the inner workings of research, by explaining clinical trial processes in everyday language. Black patients with SLE want to know why they are / are not eligible for clinical trials and they want to know in advance all the potential risks and benefits of the trials. These patients also want researchers to take the time to connect with people they already trust, including friends, family, and physicians who are already successful in their continuing care.

A key element of our work4 is that ambiguity in communicating with black patients with SLE breeds fears of racism. So the more academic researchers talk to black patients and their caregivers, the more they can alleviate fears of racial bias as barriers to trial participation. When communicating with black patients with SLE, academic researchers should be prepared to discuss racism in medicine and research. Rather than dismiss racism as something historic that no longer has an impact on clinical experience, researchers need to recognize that racial bias exists in medicine and communicate their own strategies to counter such bias.

Focus group participants4 also highlighted the importance of community engagement in increasing participation in black LED clinical trials. Black patients with SLE want researchers to be involved in the communities where they work in a way that has nothing to do with research. The experience of SLE disease comes with complex social, psychological, and economic concerns. Addressing these issues through sustained community efforts is essential to maximize overall health and well-being. Forming genuine and genuine partnerships with community members is crucial to building trust. Other black women with SLE can be credible health messengers in their own communities and researchers should partner with them to advance messages and participation in clinical trials.

The good news is that the participation of black patients in SLE clinical trials may improve. Focus group participants4 had questions about research and clinical trials, but they were not completely opposed to participating. The conscious and deliberate efforts of academic researchers to meet the needs of black patients with SLE can potentially reduce patient concerns in ways that improve their participation.

References Rees F, Doherty M, Grainge MJ, Lanyon P, Zhang W. The global incidence and prevalence of systemic lupus erythematosus: a systematic review of epidemiological studies. Rhumatol. 2017; 56 (11): 1945-1961. doi: 10.1093 / rheumatology / kex260Chae DH, Martz CD, Fuller-Rowell TE et al. Racial Discrimination, Disease Activity, and Organ Damage: The BeWELL Study (BeWELL) on the Experiences of Black Women Living with Lupus. Am J Epidemiol. 2019; 188 (8): 1434-1443. doi: 10.1093 / aje / kwz105 Falasinnu T, Chaichian Y, Bass MB, Simard JF. Representation of gender and race / ethnic group in randomized clinical trials of individuals with systemic lupus erythematosus. Curr Rheumatol Rep. Posted March 17, 2018. doi: 10.1007 / s11926-018-0728-2Sneed RS, Mason M, Williams JN et al. Using critical race theory to understand trial participation in black people with systemic lupus erythematosus: a qualitative study of patients and caregivers. Arthritis Care Res. Published online May 10, 2021. doi: 10.1002 / acr.24635 Ford CL, Airhihenbuwa CO. Critical Race Methodology in Public Health: Praxis for Anti-Racism Research. Soc Sci Med. 2010; 71 (8): 1390-1398. doi: 10.1016 / j.socscimed.2010.07.30Meghani SH, Byun E, Gallagher RM. Time to Take Stock: A Meta-Analysis and Systematic Review of Pain Relief Treatment Disparities in the United States. Pain Med. 2012; 13 (2): 150-174. doi: 10.1111 / j.1526-4637.2011.01310.xHoffman KM, Trawalter S, Axt JR, Oliver N. Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. PNAS. 2016; 113 (16): 4296-4301. doi: 10.1073 / pnas.1516047113Singhal A, Tien YY, Hsia RY. Racial-ethnic disparities in opioid prescriptions during emergency department visits for conditions commonly associated with prescription drug abuse. PLOS A. 2016; 11 (8): e0159224. doi: 10.1371 / journal.pone.0159224

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