Jessai Flores, Illustrations Editor

Misdiagnoses, missed diagnoses and exclusion from clinical treatments and trials — the consequences of using racially biased medical tools can be fatal.

Yale New Haven Health System’s Office of Health Equity and Community Impact, launched in October of 2021, aims to dismantle the false theory of “racial biology,” which assumes that a person’s race dictates their genetics. By establishing this new office, YNHHS is working through a checklist of biased medical tests and procedures to eliminate or rework. First, the system scrapped a test for kidney function and then stopped using race as a factor in predicting jaundice in newborns — their next step will be redesigning a formula for predicting kidney stones.

“It’s kind of sad that it took the lynching of a Black man in Minneapolis on TV for everyone to realize that our clinical algorithms are flawed,” said Lou Hart, the office’s medical director and an assistant professor of clinical pediatrics. “But it very much in earnest started changing during the COVID awakening and post-George Floyd America, when people realized that there are structures and systems that are propagating historical racism.”

Hart previously worked as the director of equity, quality and safety at New York City Health and Hospitals.

According to Darcey Cobbs-Lomax, the office’s inaugural director, the movement to launch the office came about during a “perfect storm”: the pandemic, significant racial tensions and social unrest. She recounted telling senior leaders in 2020 that YNHHS should “talk about health equity as much as finance.” 

The health system’s definition of health equity, Cobbs-Lomax said, is ensuring that everyone has a fair and just opportunity to be as healthy as possible.

Racial bias in clinical algorithms

YNHHS first adopted the estimated glomerular filtration rate, or eGFR equation to measure kidney function in 2003. Twenty years later, that equation is gone, officially discarded in 2022. 

The eGFR equation was developed in 1999 under the assumption that Black people naturally had more muscle mass than white people. In the calculation of patients’ eGFR scores, with a higher score meaning healthier kidneys, Black patients were automatically granted extra points. These generalizations resulted in Black patients’ kidneys automatically appearing healthier than reality, as if Black patients were innately “sicker,” Hart said. This could lead to consequences such as not being eligible for a clinical trial or certain medications, and for treatment and diagnosis to be delayed.

Hart, who is half Black and half white, remembered questioning the equation in medical school. 

“I would make a joke with another African American classmate of mine and [say] ‘I get half the equation, you get it all,’” Hart said. “How silly is that? This isn’t science, this is science fiction.”

Though racial bias in clinical formulas has been talked about since as early as 2018, it took the pandemic-era movements against police brutality and racial discrimination in the U.S. for change in this area to begin. According to Hart, a major barrier was the inertia of national professional societies. These societies were responsible for establishing a national standard for medical practice and accrediting hospitals for it — namely, they were the ones who made and endorsed the eGFR equation.

With enough pressure and outcry, Hart explained, the National Kidney Foundation and the American Society of Nephrology finally reinvestigated the equation and began recommending a race-free equation in September of 2021. Then came the long process of implementing this change across the health system.

Hart arrived at YNHHS in August 2021. He chalked up initial delays in change to COVID-19’s toll on hospital resources. While competing with various priorities of the hospital system, the office had to teach everyone how race-based equations were harming patients and threatening quality and safety.

In pushing for change, Hart learned that “different audiences need a different message.” One strategy was to bring up liability. Some health systems were sued for not giving a kidney transplant to a patient because they were labeled as Black — the old eGFR equation would have allowed a non-Black patient of the same profile to qualify for the transplant. 

By August 2022, after collecting all the necessary stamps of endorsement from senior leaders and engaging information technology resources, the new equation successfully launched in YNHHS. 

“It took us a lot longer than we would have liked,” Hart said. “But we do have policies and priorities in place to review our current clinical algorithms… because sometimes they unintentionally impact one group more than the other.”

For Hart, the mission to dismantle these legacy equations involved criticizing the academic rigor of research that established them. While studies used to justify the clinical algorithms may have identified a difference between two demographic groups, the researchers failed to consider the role played by social differences in health outcome disparities. 

Instead of questioning the possible living conditions and unique experiences facing certain groups, it was assumed that differences in health were the result of inherent, innate racial differences.

“Given our nation’s history of Jim Crow segregation… if seeing that in the clinical algorithms doesn’t evoke those emotions, I don’t know what would,” Hart said.

Among the doctors and nurses who claim to not be “racist” and to never treat anyone differently on the basis of race, Hart hopes these revelations on racial bias engrained in medical tools reveal the broader issue of structural racism. 

“It showed people that there are structures in place, that structural racism…[and that] ‘I don’t have to be a racist to be a part of a racist system,’” Hart added.

In addition, it was revealed during the pandemic that pulse oximeters — which measure oxygen levels in the blood — do not work well on darker skin tones. These devices shine light through skin to read oxygen levels; melanin, responsible for skin pigment, can interfere with such signaling. Even having painted nails could disrupt the device’s accuracy.

A 2020 study found that Black patients’ oxygen levels were overestimated at three times the rate of white patients. During COVID-19 treatment, these inaccuracies could make the difference between sending a patient home or not. 

Hart commented on how Black patients could have been sent home based on a reading of an appropriate oxygen level on the oximeter, only to find out that “they’re still out of breath.” A reading of 92, a relatively safe level of blood oxygen, could mask an actual reading of 83, a level low enough for hospitalization.

“Personalized medicine and race-based medicine are diametrically opposed, and as contemporary physicians, we want to treat every patient based on their unique characteristics and experiences and their unique body,” Hart said. “Not to say you look like another female, so you must have the exact same body.”

Another standard practice YNHHS addressed was the use of race as a factor in predicting jaundice in newborn babies, which is the presence of high bilirubin leading to yellowing of the skin. 

According to Hart, there was a historic notion that the East Asian race was at higher risk for jaundice. However, this assumption was broad; it was up to healthcare workers to identify which babies were “East Asian” and figure out if even mixed race babies would be considered at risk.

This theory resulted in babies who were identified by healthcare workers to be East Asian being “overtested and over-phlebotomized” for blood, Hart explained. 

“It just made no sense … it’s very silly and fallacious to generalize that or even to try to regionalize,” Hart said. “It’s not good science, it’s modern eugenics.”

A tool similar to pulse oximetry is used to check for jaundice in the skin, and it was found to over-read in people with darker skin complexions. Hart called it a “failure” of a tool to not have a diverse testing audience or control groups. For East Asian babies, this could have disrupted breastfeeding and led to other unintentional harms, noted Hart.

“We didn’t realize the unintentional harms, so we are now way more proactive,” Hart said. “We’re still reacting to things that have been so baked in that we haven’t seen [them].” 

Barriers to change

YNHHS recently joined coalitions to put pressure on professional societies to recognize flawed racially-biased technology and develop more equitable tools. However, one barrier to change is the absence of an alternative to tests and procedures that take race into account. 

If a hospital system tries to implement a new equation that discards race, someone could in theory sue the hospital for not following “the standard of care” determined by these large professional societies, Hart explained.

“Without having national societies to say ‘this is the new standard of care,’ you have to be a pretty pioneering hospital to go and do something that has no evidence base,” Hart said. “If something does go wrong, everyone’s going to look at you.”

Still Hart rejects the continued use of a tool that is “inherently wrong.” 

For identifying kidney stones, race was long considered as a variable in the analysis. In the current tool, where a higher score means that it is more likely a patient would have kidney stones causing symptoms, points are added for patients identified as white.

YNHHS actually invented the stone score — it was validated at YNHH’s emergency department in 2014. The original researchers are now working on a new equation to remove race as a variable, and collaborating with the office.

“Still doctors believe that race equals biology or that race predicts your genes,” Hart said. “We’re a generation of physicians away from everyone really being up to speed on that.”

Max Nguemeni MED ’21, a health equity researcher and physician, sees a lack of diversity in the healthcare workforce as another barrier to addressing health inequities. 

If YNHHS is serious about attaining health equity, Nguemeni emphasized the need for the new office to look beyond the hospital walls. He pointed to structural factors driving health inequities, including asthma disparities caused by poor ventilation in housing.

“Healthcare is but one piece of health inequities,” Nguemeni said. “And from that perspective… lobbying with the city and local government to think about how to best address the structural factors outside of healthcare that end up shaping patient health would also be one thing that [the office] could consider doing.”

The Connecticut Health Foundation also provided a grant for the office to give stipends to community members who participate in focus groups intended to engage residents outside of the hospital. According to Cobbs-Lomax, the office intends to learn about local residents’ perceptions of the healthcare system and inequities.

New campaign to collect demographic data

One of the office’s biggest projects involves collecting demographic data on patients in order to assess health disparities between groups.

This year, YNHHS is launching a public campaign, “We Ask Because We Care,” to encourage the collection of accurate patient demographic data, including on race, ethnicity, preferred language, sexual orientation, gender identity and disability identity. 

For patients who would be scared of reporting data for fear of being treated differently, Hart emphasized that data will be de-identified to understand variation across different population groups. 

“There’s not one right solution for everyone and … unless we are data informed, unless we’re looking under the hood and not just looking at the average, we will never unearth the opportunity and the potential to improve the care for every patient every time,” Hart said.

Moving forward

An older colleague within the YNHHS system once addressed Hart as a “McCarthyist on a witch-hunt,” when discussing the office’s plans. 

Two weeks later, Hart and the colleague called to talk about their differing opinions. By working through generational differences when it came to education on race-based medicine, and through reviewing new evidence, they found a middle ground. 

While Hart, who graduated from medical school in 2016, was taught about the social drivers of health, he noted that older generations of physicians may still have been fed myths on racial biology.

“There are definitely doubters, there are definitely late adopters, there are definitely, for lack of a better term, naysayers or haters who are just fundamentally opposed to this,” Hart said. “It’s so hard for them to understand how race can’t be biologic, but it just speaks to their education … the more experiences we can have together, maybe we can grow to a new mutual understanding.”

Yale New Haven Hospital was founded in 1826 as the General Hospital Society of Connecticut.

Kayla Yup covers Science & Social Justice and the Yale New Haven Health System for the SciTech desk. For the Arts desk, she covers anything from galleries to music. She is majoring in Molecular, Cellular & Developmental Biology and History of Science, Medicine & Public Health as a Global Health Scholar.