Racial Disparities in Health Care Extend to Medical Research; Researcher Dominique Kinnett-Hopkins Wants to Change That

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When Dominique Kinnett-Hopkins was studying kinesiology, the science of human movement, at the University of Illinois at Urbana-Champaign, she volunteered in an exercise research laboratory. The lab was doing research to see if an exercise regimen improved the health and quality of life for those with multiple sclerosis (MS), a degenerative neurological disorder. Kinnett-Hopkins noticed that there wasn’t much racial diversity among the study participants, but she attributed the preponderance of white participants to the school’s location in Central Illinois and the high prevalence of MS in people with Northern European ancestry. She didn’t think too much more about it.

Later, as a graduate student at the University of Illinois, Kinnett-Hopkins started doing her own research on the benefits of exercise in patients with MS. She came across a 2013 study that found Black women in the U.S. have a 47% increased likelihood of developing MS compared to white women. She also learned that less than 1% of nearly 60,000 articles about MS had focused on minority populations. “I thought it doesn’t really make sense that Black people weren’t represented in the lab’s research because we had worked on multiple nationwide research studies. They’re out there somewhere,” she remembers thinking. She decided, “This is where I want to focus my research efforts. I’m going to advocate for my community.”

In recent years, clinicians and researchers have been paying more attention to racial disparities in medical care. A 2016 study in the “Proceedings of the National Academy of Sciences” found racial bias in the assessment and treatment of pain in Black patients. Their pain was rated at a lower level by physicians and they were undertreated compared with white patients. Another study found that emergency room physicians were less likely to treat patients showing signs of a heart attack with clot dissolving drugs if they were Black. Still other studies have documented that Black Americans received less treatment and lower-quality care for health conditions ranging from cancer and heart problems to pneumonia. They also were far less likely to receive preventive care.

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But not much research has been done on the lack of racial diversity among participants in medical research. Experts say that’s because until recently, researchers assumed that what they learned about white males, who make up the preponderance of study participants, could be safely extrapolated to anyone regardless of race, gender or ethnicity. “We now know that this isn’t true,” wrote Eliseo Perez-Stable, MD, Director of the National Institute on Minority Health and Health Disparities, in 2018. “When you’re communicating about research results, it’s vital not only to explain how a study was done, but who was being studied.”

As far back as 1993, the National Institutes of Health began requiring researchers with NIH funding to report the race, ethnicity and gender of participants in biomedical research. But by 2018, Blacks and Latinos, who make up 30% of the U.S. population, still accounted for fewer than 10% of participants in genetic studies.  Some of the disparity may be attributable to the structure of the U.S. healthcare system, health scientists say. Most study volunteers are recruited at large teaching private hospitals connected to universities, not public hospitals that serve low-income people who may not have health insurance. And then there’s the legacy of the infamous U.S. government-funded Tuskegee Institute study in the 1930s of 399 Black men with syphilis. Researchers did not offer penicillin to the men in the 1940s even though it had been proven effective and become the preferred treatment. “Historically African Americans are reluctant to participate in medical research after the Tuskegee fiasco,” says Allen Heinemann, PhD, Director of the Center for Rehabilitation Outcomes Research at the Shirley Ryan AbilityLab. “They’re not interested in being medical guinea pigs.”

Kinnett-Hopkins, PhD, met Heinemann when she came to Northwestern University’s Feinberg School of Medicine in 2017 for a post-doctoral fellowship in outcomes research. He became one of her mentors. The goal of her post-doc research was to identify clusters of MS patients who were experiencing substantial disparities in healthcare access and outcomes. She also wanted to find patients who could benefit from her targeted disease-management physical activity interventions.

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She tailored a home-based exercise program for MS patients for Black participants. A hundred Black people with MS were invited to participate in a study on “understanding opinions about exercise programs for Black individuals with multiple sclerosis.” Once participants gave informed consent, 40 of them completed a 30-minute survey that asked them about their ideal exercise program and the importance of racial and cultural considerations in the design of a regime, among other things. The sample was more than 90% female and more than three-quarters had college degrees. The average age was 52 and participants had an annual household income above $40,000. Their mean body mass index was 30.4, putting them in the moderately obese category, which comes with higher risk of developing heart disease, type 2 diabetes and osteoarthritis.

The study participants indicated they would be interested in exercising an average of five times a week at moderate intensity and 64% indicated they would like the support of a behavioral coach. Nearly 60% said they considered cultural and racial tailoring to be either very or somewhat important in the design of their exercise program. Sixty-five percent said it was very or somewhat important that Black people be represented in the collateral media connected to the program and that motivational content come from someone of their race. Almost 55% ranked having a behavioral coach who was Black as somewhat or very important.

Kinnett-Hopkins followed up the survey with qualitative interviews with 10 participants to explore the results further. At one point, she showed them sample materials for an activity program that depicted a slim white model demonstrating the exercises. “They said they didn’t feel like the program was created with them in mind,” Kinnett-Hopkins said. Some of the interviewees had feedback that had nothing to do with race. Those who used canes had a negative reaction to the program’s logo, which featured an able-bodied walking cartoon figure.

The interviews led Kinnett-Hopkins, now an Assistant Professor of Kinesiology at the University of Michigan, to conclude that Black patients with MS don’t need “a different kind of exercise program but rather they need an inclusive program where everyone can see themselves in some way.” Her results were published in March 2019 in the Multiple Sclerosis Journal.