Improving Demographic Representation & Equity in Rheumatology Research

Research efforts have been slow to catch up, however. A 2018 article by Falasinnu et al. reported that whites were overrepresented in randomized clinical trials in the U.S., comprising 51% of trial enrollees but only 33% of prevalent SLE cases, while Blacks comprised 43% of prevalent SLE cases but only 14% of trial enrollees (Figure 1). Hispanics accounted for 16% of prevalent SLE cases and 21% of trial enrollees and Asians comprised 13% of prevalent SLE cases and 10% of enrollees.²

Lost Trust, Lost Representation
Many complex facets hinder the development of demographically balanced research. Trial researchers frequently face issues recruiting patients from underrepresented communities. Falasinnu et al. identified several system-level influences on minority recruitment in randomized clinical trials, including clinicians, hospitals and communities.² In addition, historical acts of discrimination may have seeded distrust of the medical system among marginalized communities.

Dr. Irene Blanco

“There has been little acknowledgment of the horrific ways that medicine has been complicit in using Black bodies and people to forward science,” says Irene Blanco, MD, MS, professor and associate dean of the Office of Diversity Enhancement at the Albert Einstein College of Medicine in New York. Dr. Blanco co-leads the ACR’s new Diversity and Inclusion Task Force. “There is a feeling among the Black community that they are used as guinea pigs for untested treatments, which creates a serious roadblock for clinical trial recruitment. The Tuskegee experiment was not that long ago. It will take time to rebuild that trust.”

That lack of trust can translate into poorer health outcomes for Black patients. “Black patients who experience discrimination or perceive racism in healthcare report higher disease activity rates and higher rates of depression,” Dr. Blanco adds. “While the data available highlight the Black patient experience, we can extrapolate that other groups are also impacted by racism in healthcare, given the level of disparities that we see in other marginalized groups.”

Although structured differently than trials, registries may also lack diversity within their clinical datasets. Registries face the additional challenge of being opt-in opportunities for clinicians, making them vulnerable to self-selection by practices.

An analysis of the ACR’s RISE registry broke down the demographics of RISE rheumatoid arthritis patient data: The mean age was 62±14 years, 77% were female, 69% were Caucasian and 46% were seen in a single‐specialty group practice (Figure 2).³ The demographic issues outlined are representative of the overall dataset.