Increasing Lupus Clinical Trial Participation Among Black Women: Addressing Racism Through Communication and Community Engagement

Systemic lupus erythematosus (SLE) is a complex autoimmune disease that disproportionately affects Black individuals. The disease was found to be more frequent and more severe among individuals of African descent,¹ with Black patients, especially women, accruing more disease-related damage than White patients with lupus.² Despite this, only few SLE clinical trials have included Black participants. It has been estimated that Black individuals constitute 43% of SLE cases, but only 14% of trial participants.³

There has been little inquiry into the factors that impact clinical trial participation among Black individuals with SLE. To address this, 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 SLE caregivers participated in 4 focus groups held in Boston and Chicago to understand the barriers and facilitators of clinical trial participation among Black women with SLE. 

Concept of Critical Race Theory (CRT)

We addressed the research question using CRT, a theoretical framework that has recently received a great deal of media attention for its use in understanding how racism has impacted 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 individuals are chronically exposed to racism through their everyday interactions, as well as through larger systems and policies. Critical Race Theory has been used to understand links between racism and racial disparities in homeownership, educational attainment, and criminal justice policy. In recent years, public health practitioners have adopted 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 allows public health practitioners to think about racism as a fundamental cause of racial and ethnic disparities in health outcomes.⁵ 

We used the PHCRP to think about racism as a predictor of clinical trial participation among Black women with SLE. Participants were specifically asked to think about their own experiences with racism within their SLE care and in health care in general. We were careful to center the needs of Black women in our work. Black women led the focus groups, and we deliberately asked our research participants about how their unique identities as being both Black and a woman might impact their interactions with the health care system.⁴ 

Racism in Health Care Systems

We observed a lot of conversation about racism in health care. Participants talked 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, the conversations about racism in health care were not only historical. Several participants talked about current, everyday experiences with health care-related racism. For example, there is a large body of research documenting racial disparities in clinical pain management. Black patients are prescribed pain medications at lower rates than White patients.⁶ A  2016 study demonstrated that White medical trainees often hold false beliefs about biological differences between Black and White individuals that can contribute to racial disparities in pain assessment and treatment.⁷ These issues emerged in our focus group work. One focus group participant mentioned racial bias in her treatment for pain, suggesting that physicians often reviewed reports of pain from Black patients merely as drug-seeking behavior.⁸ Consequently, this perceived racial bias leads to future mistrust of physicians in everyday interactions.

In an effort to increase Black participation in SLE clinical trials, many researchers have deliberately engaged in outreach activities in African American communities. However, such outreach can make things even worse in terms of trust, as Black patients often question physicians’ motives. Given that clinical trials typically involve new and active treatments, some focus group participants in our study were concerned that the enrollment of Black patients in clinical trials was a function of racially motivated desires to use Black individuals as “guinea pigs” for risky experiments.⁴

Strategies to Improve Trial Participation Among Black Patients With SLE

So, given the level of skepticism that exists between Black patients and the health care system, how can we increase SLE clinical trial participation among Black patients?

We learned that Black women with SLE often do not trust the health care system enough to participate in clinical trials. Thus, increasing trust is paramount to increasing participation. But building trust does not happen overnight, and it does not begin when our research grants get funded. Trust requires ongoing, transparent communication.  Black patients with SLE want researchers to demonstrate a willingness to talk to Black patients about the “nuts and bolts” of research, 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 all the potential risks and benefits of trials upfront. These patients also want researchers to take their time to communicate with the people that they already trust, which may include friends, family, and the physicians who already successfully participate in their ongoing care. 

A key takeaway from our work⁴ is that ambiguity in communication with Black patients with SLE breeds fears of racism. Thus, 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. In communicating with Black patients with SLE, academic researchers must be prepared to discuss racism in medicine and research. Rather than dismissing racism as something historical that no longer impacts the clinical experience, researchers must acknowledge that racial bias in medicine exists and communicate their own strategies to counteract such bias.  

The focus group participants⁴ also highlighted the importance of community engagement in increasing Black SLE clinical trial participation. Black patients with SLE want researchers to be engaged in the communities where they work in ways that have nothing to do with research. The SLE disease experience brings with it complex social, psychologic, and economic concerns. Addressing these issues using sustained community-engaged efforts is crucial for maximizing overall health and well-being. Forming genuine, authentic partnerships with community members is crucial for building trust. Other Black women with SLE can be credible health messengers in their own communities and researchers should partner with them to advance clinical trial messaging and participation.

The good news is that participation of Black patients in SLE clinical trials can improve. The focus group participants⁴ had questions about research and clinical trials, but they were not completely averse to the idea of participating. Conscious, deliberate efforts from academic researchers to address the needs of Black patients with SLE can potentially reduce patient concerns in ways that ultimately improve participation. 

References

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