Most patients unaware of how race is used to make risk assessments, guide clinical care

(Boston)— Algorithms that incorporate race as a modifying factor to guide clinical decision-making have recently been criticized for propagating racial bias in medicine. The calculation of lung or kidney function are examples of equations that have different diagnostic parameters depending on an individual’s race. While these clinical measures have multiple implications for care, patients’ awareness of and their perspectives on the application of such algorithms is unknown.

To examine patients’ perspectives on race and the use of race-based algorithms in clinical decision-making, researchers from Boston University Chobanian & Avedisian School of Medicine and Boston Medical Center (BMC) undertook a study to investigate patients’ perspectives on race, racism and the use of race-based algorithms in clinical decision-making. 

“We learned that patients were generally unaware of the widespread use, and misuse of race in medicine and also elicited differing perspectives on race and racial discrimination in healthcare settings,” explained corresponding author Insa Marie Schmidt, MD, MPH, assistant professor of medicine. “For example, the use of race to calculate pulmonary function can reduce the likelihood that Black patients receive disability support for lung diseases.”

To examine patients’ perspectives, the researchers conducted semi-structured, qualitative interviews. Most study participants were not cognizant of how race has been used to make risk assessments and guide clinical care. Experiences described by non-white participants ranged from micro-aggressions to overt acts of racism, including perceived racist encounters with healthcare providers. In addition, patients spoke of a deep mistrust in the healthcare system as a major barrier to equitable care. 

According to the researchers these findings highlight the deleterious effects of racism on health and suggest that focusing research on patients and their lived experiences is crucial to inform the development of anti-racist policies and regulatory agendas.

“We hope this study will ultimately highlight the need to center the voices of historically marginalized and minoritized patients when designing research aimed at addressing racism in medicine,” adds Schmidt.

These findings appear online in the Journal of General Internal Medicine. 

I.M.S. is supported by the American Philosophical Society Daland Fellowship in Clinical Investigation. I.M.S. and Merav S. are supported by the Social Science Research Council grant SSRC-4393. S.S.W. is supported by NIH grants UH3DK114915, U01DK085660, U01DK104308, R01DK103784, and R21DK119751.

Note to Editor:

S.S.W. reports personal fees from Public Health Advocacy Institute, CVS, Roth Capital Partners, Kantum Pharma, Mallinckrodt, Wolters Kluewer, GE Health Care, GSK, Allena Pharmaceuticals, Mass Medical International, Barron and Budd (vs. Fresenius), JNJ, Venbio, Strataca, Takeda, Cerus, Pfizer, Bunch and James, Harvard Clinical Research Institute (aka Baim), Oxidien, Sironax, Metro Biotechnology, Biomarin, and Bain. N.D.E is a full-time employee of Fresenius Medical Care. E.C.M. is also employed by the American Medical Association in the Center for Health Equity. All other authors have nothing to disclose.