Race-Norming in Health Care: A Special Report

Malika Fair is a new mother. She’s an African American. She’s a practicing physician. And, she’s the senior director of equity and social accountability at the Association of American Medical Colleges (AAMC), as well as an associate clinical professor in the Department of Emergency Medicine of the George Washington University School of Medicine and Health Sciences in Washington, D.C.

All of which gives her a pretty panoramic perspective on how Black people are treated by the healthcare system in the U.S. One common practice that deeply concerns Dr. Fair is called “race-norming,” which refers to the adjustment of medical test results or medical risk assessments based on a patient’s race. In other words, if you’re Black , you might score differently than you would if you are white with the identical or similar set of symptoms simply because of the color of your skin.

“It is critical that we as a medical community reexamine and reevaluate the use of race in clinical algorithms, because it has the real potential of impacting our patients’ lives,” says Dr. Fair. She points to one such race-based calculator that she finds disturbing: UTICalc, a urinary tract infection calculator for use in children, developed by researchers at the University of Pittsburgh in 2018. Dr. Fair’s daughter falls into the age range for which that calculator is used.

“It says that because she’s Black, she has a lower risk of having a urinary tract infection,” Dr. Fair explains. “Where does that come from? It’s concerning because it means that my daughter could be discriminated against by a well-intentioned medical system, and well-intentioned doctors, because of this formula.”

Surprised to learn that this practice is so common in 2021? So are most people when they learn of the controversial approach—it’s not exactly well-publicized to patients. And, it’s under increasing scrutiny from medical professionals across the board.

The widespread application of race-norming in healthcare recently came to national attention in a big way thanks to pro football. Yes, you read that right—the National Football League (NFL) inadvertently shined a light on the issue after the long-term health ramifications of sports-related concussions made headlines resonating far beyond the sports page.

It started back in 2013, when the NFL agreed to pay $765 million as compensation for brain damage that players had suffered as a result of recurring concussions, an all too common occurrence in the high-contact sport.

More than 3,000 retired players of all racial backgrounds have since filed claims, the majority of them for dementia, according to reports. As part of the claims process, players agree to take cognitive tests for dementia and other neurological conditions, the potential result of a career filled with tackles and repeated blows to the skull. Science confirms that repetitive trauma to the brain, such as that experienced by football players, military veterans, and others at high risk of frequent head injury, can cause chronic traumatic encephalopathy, or CTE. CTE kills brain cells and, over time, leads to cognitive problems like memory loss and dementia, according to the Concussion Foundation.

But here’s the thing: According to lawyers representing the players, those same cognitive evaluations use a methodology that assigns Black people a lower pre-injury baseline for cognitive function than white people—making it harder to show they’ve endured neurological damage from sports-related concussions. (Consider this: Nearly 70% of NFL players are Black. That means nearly three-quarters of retired pros face inflated odds of having their claims denied by the NFL.)

In August 2020, two former NFL football players, Kevin Henry and Najeh Davenport, who are both Black, filed a lawsuit in hopes of forcing the league to stop using the race-normed neurocognitive evaluation because of racial bias baked into its scoring. Both Henry and Davenport have been diagnosed with cognitive impairment since their NFL retirement. Both of their claims were denied. Their lawsuit was dismissed in March 2021 after the judge in the trial ordered the parties into mediation. More recent reports suggest that the race factor may at last be removed from consideration.

But the issue of race-norming goes far beyond cognitive assessments and pro sports. Race informs many everyday clinical decisions and calculations across multiple fields of medicine. These fields include (but are not limited to):

• kidney care

• cardiology

• oncology

• obstetrics

• urology

• endocrinology

• pulmonology

Before the NFL story hit, this practice generally operated behind the scenes. And while some of the public is gradually becoming more aware of race-based calculations, “there are many race-based clinical algorithms that I’m certain patients do not know about,” says Nwamaka Eneanya, M.D., a kidney specialist and assistant professor of medicine in the Perelman School of Medicine at the University of Pennsylvania in Philadelphia. Dr. Eneanya is a vocal critic of race-norming in her field, nephrology.

Last summer, the New England Journal of Medicine (NEJM) published a paper that outlined—and criticized—the ways that nephrology and many other medical specialties use race in various ways to help guide doctors as they determine what diagnoses to make and what care to provide. As the paper’s authors point out, examples of race-based diagnostic and treatment algorithms are widespread, and often take the form of online risk calculators. Doctors go to a website, such as that of a prominent medical association, input patient data, including race, and get a recommendation that may influence the treatment they prescribe.

Take cardiology, for example. Say you’re a doctor evaluating a heart failure patient. You likely will use the American Heart Association’s “Get with the Guidelines—Heart Failure Risk” tool, designed to help guide physicians on treatment. You input patient data including blood pressure, age, sodium level, and heart rate. It also asks if your patient is Black. Black patients automatically get three points subtracted from their risk score because the research on which the tool was based says Black heart failure patients have a lower risk of dying in the hospital. Which means they’re less likely to score high enough to be eligible for certain treatments available to white patients, for whom the algorithm is programmed to show a higher risk of dying, says David Shumway Jones, M.D., a physician and historian who teaches history of medicine and medical ethics at Harvard University, and the senior author of the NEJM study that examined 13 different race-norming algorithms across medical specialties. This specific risk assessment tool was developed from the results of a large study that appeared in 2010 in Circulation, a major journal published by the American Heart Association.

Another example is the online Vaginal Birth after Cesarean (VBAC) Risk Calculator. It ranks a Black woman who has previously had a C-section as less likely than a white woman under similar circumstances to both safely and successfully give birth vaginally for all subsequent deliveries. That means Black women may be advised more often to have another C-section, despite potential surgical complications, longer recovery, and more pain. This tool was developed using research from a 2005 study that linked being Black to increased risk of complications during vaginal birth. Marital status and insurance type were also associated with risk, but those factors were inexplicably left out when creating the algorithm, says Dr. Jones.

To many reading this story, the practice of race-norming sounds like outright racial discrimination. Turns out, it’s more complicated than that.

Many of the tools that use race as a factor have been developed and/or endorsed by major medical associations, such as the American Heart Association and the National Kidney Foundation, or are academically validated by significant studies. These tools incorporate several factors that research has shown to be associated with various health outcomes, and in the past, according to Dr. Jones, it seemed to make sense to include race as one of those factors. The goal wasn’t to design a tool that would discriminate and deny care to Black patients, he says. Instead, the hope was to improve the precision of clinical care. But, as Dr. Jones recognizes, race is a lot more complicated than a single data point, and race-based tools can have unintended effects. As a result, a growing number of physicians are pushing back against using them to make medical decisions.

“Everyone engaged in the debate seems to be committed to the goals of health equity and achieving the best outcomes for patients,” says Dr. Jones. “The people who develop these tools are convinced that they’re working toward that end. And, the people who are critical of the tools are convinced that the tools are at cross purposes with that end. Everyone believes they’re doing the right thing. No one is trying to hurt patients.”

It's unclear exactly how long the practice of race norming has been used in clinical algorithms, but the approach has been around at least since 1974. That year, a group of researchers introduced something they called a “scaling factor” for Black patients when evaluating their lung function.

“Was it the first? That would be very hard to know,” Dr. Jones says now. “Someone in 1922 could have developed a corrected algorithm and published it in an obscure journal.”

Despite the prevalence of such a wide array of race-based assessment tools, little is known about their impact—or even how much, exactly, they are being used. “It’s hard to know what percentage of medical decisions are actually affected by race-norming,” admits Dr. Jones.

In his NEJM study, he and his colleagues examined a range of algorithm tools, the oldest one in use since 1998. The newest tool launched in 2018. Dr. Jones believes that things need to be done differently—starting now. “Medically, we should treat everyone the same, unless there’s a really good reason to do something different,” he says.

But that’s not always how it works. Take coronary artery bypass surgery, the most commonly performed heart surgery in the U.S. Research done by the Society of Thoracic Surgeons, first shared in 2008, then updated in 2018, found that Black people have a 20% higher risk of dying within a month of bypass surgery compared to their white counterparts. The Society’s algorithm tool uses that data to calculate risk—which may then lead to fewer Black patients being recommended for this procedure.

But Dr. Jones questions the application of anyone’s race to assess the risk of death from bypass surgery. “Is there any plausible biological mechanism that African Americans would be at higher risk?” he asks. “I can’t imagine any credible biological reason why that would be. Either Black patients are sicker going into surgery, or Black patients are somehow getting worse care.”

All of which speaks to factors that are not biological or racial in nature—rather, they are socioeconomic issues that point to existing health disparities between Americans with different skin colors. Lack of access to quality health care in Black communities is the more likely culprit, says Dr. Jones. “There’s a lot of assumption, theory, and argument in these discussions because we don’t have the basic facts needed to answer these questions. I believe that a lot of things that are claimed to be racial effects are actually unmeasured socioeconomic effects. But I can’t prove that. The data doesn’t exist.”

Income is one example. According to Dr. Jones, most doctors fail to collect precise info about their patients’ income because it’s an uncomfortable topic. “We’re totally happy to ask patients about their sexual history, but asking about their income is considered inappropriate by both doctors and patients,” he points out.

Dr. Fair agrees that we need to better understand the role of race in medicine. “If we’re really going to help people get healthier, then we need to do that deeper scientific analysis to figure out what are the genetic components that are linked by ancestry,” she says. “But when we lump it into this imprecise and variable term called ‘race,’ which is socially constructed, that’s when the problems arise.”

Neither Drs. Fair nor Jones think medicine should be colorblind. Race, they argue, can play a role in health and health care, but only if it’s clearly understood what that role is, and if there is a clear justification for using race. For instance, in prostate cancer, there is clinical evidence showing that African Americans are at higher risk not only of developing the disease but also of dying from it. As a result, experts recommend that Black men discuss prostate cancer screening with their doctor at an earlier age than is recommended for white men who don’t otherwise have an elevated risk. (The reasons for the higher risk among Black men remain unknown.)

For Black women, recent research suggests that screening for breast cancer begin at age 40, rather than age 50, because Black women develop the disease before age 50 more often than white women do. Black women are also more likely to die from breast cancer. Right now, the U.S. Preventive Services Task Force is reviewing its standing guidelines, and is considering what role race and ethnicity, as well as many other factors, should play in determining the effectiveness of such screenings.

The many unknowns concern those opposed to race-norming. It’s true that in the studies on which many race-adjusted tests are based, race did, in fact, show itself to be a factor. But that, says Dr. Fair, shouldn’t end the discussion—it should prompt additional important questions.

“We have to critically ask why race was there in the data in the first place,” she says. “Is it because race is a proxy for social conditions? Or was it there because it was a proxy for an actual genetic condition that is linked by ancestry and not race?”

Among the most controversial tests that involve race-norming is a seemingly innocuous method for predicting kidney failure. The estimated glomerular filtration rate, or eGFR, test measures creatinine, a waste product produced by your muscles. When your kidneys work as they should, they filter creatinine out of your blood. Failing kidneys are progressively less able to do this job adequately, which the test reveals. People who score 20 or below on an eGFR test are eligible to be put on the waiting list for a kidney transplant.

Seems straightforward enough. Except built into the eGFR test is a score adjustment based on race. Say a Black patient gets a score of 19. If they were white, that would make them eligible for the kidney transplant list. But because they are Black, their score automatically gets bumped up to 21. Suddenly, their likelihood of a transplant drops.

The race “correction” used in eGFR testing is based on two large studies, one conducted in 1999, the other in 2009, that showed that the average Black participant had a higher level of creatinine than the average white participant. The thinking went, if Black people started higher, their scores should be adjusted to account for it. The risk calculator used by doctors across the U.S. is endorsed by the National Kidney Foundation, which hosts the tool on its site.

The logic fails Dr. Eneanya, who also serves as director of health equity, anti-racism, and community engagement in UPenn’s Renal-Electrolyte and Hypertension Division. “What do you do if that patient is otherwise healthy and a good candidate for a transplant? Do you wait? And if you do wait, why? Just because their skin color is Black, or they self-identify as Black?” she asks.

In a study published in January in the Journal of the American Medical Association, researchers reported that using race to calculate eGFR results delayed treatment by nearly two years for Black patients who would have otherwise qualified had they been white. Dr. Eneanya’s own research has found similar disparities. In a study published in February in the Journal of General Internal Medicine, she and her colleagues estimated that one-third of the Black kidney patients in the study would have been shown to have more severe kidney disease if their race had not been considered. Of the 64 Black patients in the study who would have qualified for the transplant waitlist without factoring race, zero were referred, evaluated, or waitlisted for kidney transplant.

Dr. Eneanya says that while the original studies on creatinine did show significant differences between Black and white study participants, no satisfactory explanation for the difference has emerged. Initially, researchers suggested it was because Black people are more muscular than white people, and, because muscle produces creatinine, they therefore must have more creatinine in their bloodstreams. But that theory was based on small studies done decades ago, which were far from conclusive. Currently, there is no known biological reason to treat patients differently based on race—yet the practice remains.

“If we don’t have inherent biological differences in kidney function by race, why would we use this race correction?” asks Dr. Eneanya. “That’s really the million-dollar question.”

Dr. Fair expresses concern that using race may influence how doctors view their patients.

“One of the potential damaging effects of having eGFR tests include race as a factor is that, consciously or subconsciously, it tells physicians that race is based in biology, when we know that it’s actually a social construct. Even though it may not affect our decisions directly in the ER, I do think it has an impact on how we take care of all of our patients if we are making any decisions based on an association of race and disease that does not exist,” she says.

Dr. Eneanya is part of a joint task force put together by the American Society of Nephrology and the National Kidney Foundation to reevaluate the use of race in assessing kidney function. It affects far more than just transplant eligibility. Depending on your eGFR score, you can be denied a referral to a kidney specialist. That may prevent you from receiving necessary care.

However, the scoring system does have some potential advantages for Black patients. For example, if the adjusted score truly reflects their kidney function, it may help prevent Black patients from receiving unnecessary kidney treatment. And, Black patients with diabetes also may benefit from the elevated score. Why? Because it’s recommended that people who score below 30 on the eGFR test should not be prescribed the widely used diabetes drug metformin, nor a newer class of diabetes medications called SGLT2 inhibitors. The race adjustment may boost their score above that cutoff, making them eligible for those important medications.

But more times than not, those numbers work against people of color. In 2014, researchers at Yale University and elsewhere developed a tool known as the STONE score, to help doctors determine whether a patient has a kidney stone. Those who score high on a scale of 0 to 13 will be referred for a CT scan to confirm the diagnosis. And, yes, you guessed it: One factor it considers when calculating that score is race.

Dr. Jones has a message for doctors who use the STONE score: “If you are right at the cutoff that tells you to say yes to the CT scan if the kid is white and no to the CT scan if the kid is Black, I would stop and think there,” he advises as a medical ethics expert who strongly opposes this practice. “Do I really think race is meaningful enough in developing a kidney stone that I’m going to deny this person a CT scan because of it?”

He acknowledges that doctors don’t rely solely on tests like the eGFR to make important decisions. “Most doctors would say the test is just one piece of information, and no one is forcing them to do what the test says,” Dr. Jones says. “Patients and physicians still have a lot of discretion.”

The practice of race-norming is being scrutinized more and more now that medical schools are becoming diverse in gender and race. And, according to Dr. Eneanya, strong voices among the newest crop of doctors are increasingly speaking out against criteria established for diagnosing disease based on skin color.

“When they hear that we don’t know why there are differences, but we continue to use these practices that can be harmful to Black patients—who already experience significant health disparities and racial injustice in this country—they want change now,” she says. “And I don’t blame them. People feel to their core that this is extremely wrong. Patients feel that this has been happening behind their backs.”

A few institutions, such as the University of Washington in Seattle, the University of California San Francisco, and Beth Israel Deaconess Medical Center in Boston, have made changes, dropping race as a factor in evaluating conditions like kidney disease.

But despite very strong reservations about the practice, Dr. Fair does not want to remove all such algorithms without first understanding their impact and why they were adopted in the first place. “I don’t think we should completely remove race because it was there for a reason," she says, "probably because it represented the impact of racism on a patient’s outcome.”

The effects of racism have been linked to a wide variety of health problems. Chronic, daily stress as a result of racism is one very significant example. Such stress can boost blood pressure and inflammation. It can lead to harmful behaviors like alcohol and drug abuse. It can impact sleep and increase the risk of depression and other mental health problems. All can reflect the impact of racism on a person’s physical and emotional well-being, according to a 2019 report published in the Annual Review of Public Health.

Dr. Jones remains optimistic that the future of medicine will find a solution to what he views as an outdated practice. “We’ve done complicated things,” he says. “We have cell phones. We have GPS. Clearly, we’re up to the challenge of figuring out the right way to describe humans so that we can detect medically relevant effects. We just need to invest the effort.”

In the meantime, concerned patients do not have to leave such practices unchallenged. Dr. Eneanya says to ask your doctor the most basic question first: What race is in my chart right now? From there, broaden the discussion to determine how race may affect your doctor’s decisions, she advises: “Ask what types of tests use race and what does that mean for my care, whether it’s for kidney disease, osteoporosis, or heart disease.”

And, she adds, ask your doctor about alternative tests, ones that don’t rely on race. The eGFR, for example, is just one test of kidney function. Other tests, though more complicated and/or expensive, also exist. Discuss these options and encourage a frank and open conversation.

“Your physician should be transparent and engaged in what we call shared decision-making,” Dr. Eneanya says. “Using race covertly, behind the scenes, without letting patients know violates the principles of shared decision-making.” And decisions about your health are exactly the ones you need to be involved in.