Many healthcare researchers are explored into the topic of healthcare disparities and racism these days. All kinds of data are being plumbed for evidence and insights.

What may get lost amid this type of numbers-driven research is the experience of patients. Kevin A. Jenkins, Ph.D., and colleagues set out to help fill that gap with a study that involved interviewing 36 Black veterans with chronic kidney disease about the racism they experienced as patients. The results were published in early May in JAMA Network Open.

The veterans described their headaches and high blood pressure as manifestations of the racism in the treatment they received. They also talked about always having to prove themselves to clinicians and staff, burying feelings and turning to food for comfort. Positive coping mechanisms include mentoring young adults, religious faith and seeking out family support.

Jenkins, a lecturer at the University of Pennsylvania and an investigator at the VA Center for Health Equity Research and Promotion (CHERP) at Corporal Michael Crescenz Medical Center in Philadelphia, conducted 30- and 60-minute in-person interviews of Black patients at the center. The interviews were organized around three open-ended questions: What are some examples of racism you have experienced by a doctor? What are some examples of racism you have experienced by someone who works at the hospital who is not a doctor? How do you think racism affects your health? The interviews were transcribed and the answers analyzed for themes and connections.

Several interviewees mentioned the stress of racism. “…What’s balled up inside of me brings stress not only on my kidneys but on every other part of my body. It’s stress on the head, it’s stress on my heart,” said one participant.

Several mentioned differences in the way they were treated compared with White patients. “I just watch…the interaction with other patients that are White,” said one patient. “They may spend time with them, talking with them, this or that, less time with me or the other African Americans that are in the clinic.”

Chronic kidney disease and end-stage kidney disease are two of the many health conditions that disproportionately affect Black individuals in the U.S. The difference exists among Black veterans, even though the services provided by the Veterans Health Administration, which are open to all veterans, would seem to help with healthcare access issues. But Jenkins and his colleagues cite research showing that Black veterans with chronic kidney disease have worse outcomes than others.

Jenkins and his co-authors say that experiencing racism is a form of trauma and that strategies that are part of the trauma-informed healthcare used in cases of rape and child abuse could help lessen the effects of racism in healthcare. The strategies include cultural humility — a recognition that one cannot fully understand another person’s culture — and developing a “partnership of mutual respect” with patients that involves working with them on treatment plans.