P
ediatrician Alexandra Epee-Bounya had had enough. In her 20 years caring for children in Boston, she had seen hundreds of kids with suspected urinary tract infections. Each time, she’d turn to a calculator, used by all Boston Children’s Hospital clinicians, to judge the youngest children’s risk. Did the infant have a high fever? Add a point. Was she a girl? Add two points.
As she went down the list, one of the factors tripped her up every time: Was the child Black? If not, add a point. The more points, the higher the risk of a UTI, which meant the child would get follow up testing. How could it be that the color of a child’s skin dictated their care?
“It always rubbed me the wrong way,” said Epee-Bounya, whose mother was from France and father is from Cameroon. She considers herself mixed race, but “in this country — I came when I was 16 — I learned that I was Black,” she said. How would a doctor categorize her, or her children, she wondered?
Her frustration boiled over in the spring of 2019. In a hurried moment between appointments, she shared her concerns with a colleague in the hallway. “I don’t understand this ‘Black race’ characteristic,” she said. “It doesn’t make sense.”
That conversation would lead Boston Children’s to remove or modify the use of race, ethnicity, or ancestry from eight such algorithms used to guide physicians’ decisions about patient care, including for UTI.
But a STAT investigation found that race-based algorithms are still widely used across medicine, on millions of patients a year. Growing numbers of clinicians, researchers, and health care leaders argue that it is wrong to consider people of different races as biologically different, and to incorporate those outdated notions into clinical tools. They had early successes, as in Boston, but now are confronting powerful headwinds, including challenges from the political right. “The minute it’s no longer in vogue, we don’t hear about it,” said Epee-Bounya.
That’s only part of the explanation. In more than a hundred interviews with clinicians and researchers, STAT found a health care system struggling to reassess its scientific and ethical assumptions about race. Clinicians have been locked in fierce debates about the best way to modify their tools to reduce harm and create fairer outcomes for patients. If race is scratched out of a tool, it’s often an exasperating process to get the revamped version used consistently across America’s disjointed health care system. And there’s currently no way to enforce standards for how race is used by clinicians or researchers.
Race-based calculators became a flashpoint after the murder of George Floyd in 2020, which ignited a movement for racial justice that rippled into medicine. Lawmakers and scientists issued calls to eliminate clinical tools that perpetuate bias and may harm patients of color. A kidney health calculator kept Black patients from receiving needed transplants. Lung function testing with race corrections led to missed diagnoses of severe pulmonary disease. And in all likelihood, UTI guidelines for little kids — created to avoid subjecting them to needless catheterizations — left Black girls with undiagnosed infections, and in some cases, long-term kidney damage. Since then, a handful of race-based calculators used nationally have been revised, and several more are subject to debate.
Just a few years later, though, that early progress is stalling. At the University of Pittsburgh, researchers have identified at least 40 clinical algorithms that still include race adjustments. Many are used daily by physicians to help make decisions about the patient in front of them: They punch in patient characteristics, and the algorithm uses a formula to spit out a result that guides care. While a few calculators on that list are under review, dozens that may be harming patients have yet to be changed, or even reexamined. And that doesn’t count hundreds of home-grown tools, like those at Boston Children’s, that are used in individual hospitals.
In the face of this daunting task, leadership is scarce. The work to reconsider race’s role in medical decisions is often being driven by medical trainees: young, energetic, and deeply aware of the insidious way that structural racism can perpetuate inequities. At Boston Children’s, for example, pediatric resident Bobby Rosen assembled a group of volunteers to evaluate the hospital’s guidelines for lingering mentions of race, ethnicity, and ancestry.
While their efforts are laudable, advocates say a grassroots and piecemeal approach isn’t the way to tackle such an entrenched issue. “This is a very difficult problem that cannot be solved through the volunteer labor of trainees,” said Jenny Tsai, an emergency medicine physician in Oakland, Calif., who pushed for changes while a medical student. If medicine needed to reform anatomy training, she added, “they would never get two medical students to work on it over the summer and try to figure it out.”
With organized medicine taking halting steps, the Biden administration is using its powers to encourage changes. In part of a rule that kicks in next May, the U.S. Department of Health and Human Services prohibits discrimination through the use of patient care decision support tools, including commonly used calculators, and requires care providers to take steps to identify and fix discriminatory tools.
But advocates are skeptical the rule will have much impact. The policy is built to drive voluntary compliance more than penalize use of discriminatory tools. And as pediatricians have learned in the case of UTI, responsibility for race-based clinical tools is sprawling: It falls to individual clinicians and health systems, the researchers that develop new tools, and medical specialty societies that vouch for their use.
The use of race in clinical algorithms and decision-making tools has been a contentious issue in the medical field for years. While some argue that incorporating race can help predict disease risk and provide personalized care, others believe it perpetuates harmful stereotypes and exacerbates health disparities. The debate over the role of race in medicine has intensified in recent years, with advocates pushing for more accountability and transparency in the development and use of these tools.
One such advocate is Michelle Morse, the chief medical officer for New York City’s health department and leader of the NYC Coalition to End Racism in Clinical Algorithms (CERCA). Morse and her team have been working to get health systems to adopt race-redacted tools to address systemic racism in healthcare. However, Morse acknowledges that accountability is lacking, and there is a need for both incentives and consequences to drive meaningful change in medicine.
Despite efforts like CERCA, individual pressure to act has often been insufficient to dismantle the entrenched use of race in clinical decision-making. Epee-Bounya, a healthcare professional, lamented the lack of a national coalition to drive change beyond individual institutions. Without a unified framework, pockets of progress are easily extinguished, and the status quo persists.
One example of the impact of race in clinical tools is the inclusion of race in Boston Children’s UTI calculator. This decision was based on data showing that Black children were less likely to be diagnosed with UTIs, leading clinicians to adjust their risk assessments accordingly. However, this practice has raised concerns about perpetuating racial stereotypes and biases in healthcare.
Dr. Nader Shaikh, a pediatrician and researcher at UPMC, developed a UTI risk calculator that included race but later questioned the necessity of using race as a predictive factor. Like many clinicians, Shaikh relied on race-based guidelines for years without fully understanding the implications. The inertia of using race-based tools has allowed them to become deeply ingrained in clinical practice, despite mounting evidence of their harmful effects.
Advocates like Tiffani Johnson, a pediatric emergency medicine physician, have long questioned the use of race in clinical decision-making. Johnson highlights the fallacy of equating race with biological determinants of health and emphasizes the need to identify and address the underlying factors driving health disparities.
As the debate over race in medicine continues to evolve, there is a growing recognition of the need to move away from race-based tools and toward more equitable and inclusive approaches to healthcare. While the road to dismantling the use of race in clinical algorithms may be long and complex, advocates are committed to driving meaningful change and promoting health equity for all patients. Black kids make up just 82% of the children who are diagnosed with urinary tract infections (UTIs), according to recent data. This alarming statistic has raised concerns among health equity advocates, as it suggests a potential bias in the algorithms used to diagnose and treat UTIs in children.
Black girls, in particular, are at a higher risk of missing UTIs due to the fact that girls are more prone to these infections than boys. Joseph Wright, the chief health equity officer for the American Academy of Pediatrics (AAP), expressed his concerns about the potential harm being done to little Black girls who may be misdiagnosed or not diagnosed at all. If left untreated, UTIs can lead to serious complications such as renal scarring, hypertension, increased risk of preeclampsia, and even kidney failure in the long run.
The issue of race-based algorithms came to the forefront in 2020, following the murder of George Floyd and the subsequent calls for racial justice. Harvard medical trainees, including Darshali Vyas, had been working on a paper highlighting the use of race-based algorithms in healthcare and calling for their examination. The paper was eventually published in the New England Journal of Medicine, prompting a reevaluation of race-based tools in clinical practice.
Political pressure from lawmakers and medical society leaders led to the removal of race from several clinical tools, including calculators used in obstetrics and nephrology. The American Thoracic Society also supported the removal of race from lung function tests, despite initial skepticism from some pulmonologists. The AAP took a proactive stance by retiring its race-based clinical practice guideline for UTI management in young children.
While some clinicians argue that removing race from clinical tools is essential to prevent harm to vulnerable populations, others caution against hasty decisions and advocate for a more thoughtful approach. The Council of Medical Specialty Societies CEO, Helen Burstin, emphasized the importance of ensuring that any changes made to existing guidelines are done correctly to avoid unintended consequences.
A recent survey conducted by the American Medical Association found that while some specialty societies have taken steps to eliminate problematic race-based tools, others have not yet considered or taken action on this issue. The challenge now lies in bridging the gap between awareness of the problem and implementation of solutions.
Ultimately, the goal is to ensure that race is not used as a determinant of health outcomes and that all children, regardless of their race, receive equitable and appropriate care. Physicians and medical organizations must work together to address the systemic biases that may be perpetuating disparities in healthcare and strive to uphold the principle of “do no harm” in their practice. The debate around the use of race in algorithms in healthcare continues to be a contentious issue. While some argue that removing race from algorithms could harm patients, especially those who are most vulnerable, others believe that the inclusion of race perpetuates systemic biases and leads to unfair treatment.
Debra Patt, a breast cancer oncologist and board member of the American Society of Clinical Oncology, emphasized the importance of considering race as a predictive variable in breast cancer risk calculators. She pointed out that Black women are more likely to have triple-negative breast cancer, and while the underlying causes of this disparity are not fully understood, race remains a crucial variable in predicting outcomes and guiding treatment decisions.
Similarly, the Society for Thoracic Surgeons defended the use of race in its operative risk calculators, arguing that removing race would result in inaccurate information being provided to patients and healthcare providers. Despite concerns about the potential harm caused by race-based algorithms, some medical societies believe that race is a necessary factor in predicting patient outcomes and reducing disparities in healthcare.
A recent review by the Agency for Healthcare Research and Quality (AHRQ) highlighted the complex nature of race-based algorithms in healthcare. While some algorithms have been found to cause harm, others have been designed to reduce disparities and improve outcomes for marginalized populations. The review concluded that the context in which race is used in algorithms is crucial in determining its impact on patient care.
Clinicians and medical societies are now faced with a dilemma: prioritize predictive accuracy or promote racial justice in healthcare. The decision to include or exclude race from algorithms ultimately rests on a value judgment, with no clear consensus on the best approach.
In light of these challenges, individual clinicians like pediatrician Dr. Nader Shaikh have taken matters into their own hands. Shaikh, who developed an independent calculator for urinary tract infections (UTIs) in children, grappled with the role of race in his algorithm. After realizing the ethical implications of using race as a predictor of disease, Shaikh worked to create a race-free version of his calculator that accurately predicted UTI risk without relying on race as a variable.
By considering other factors that could influence UTI risk, such as previous UTIs and fever duration, Shaikh was able to successfully eliminate race from his calculator without compromising its accuracy. His experience serves as a testament to the possibility of developing effective healthcare algorithms that do not perpetuate racial biases and discrimination.
As the healthcare industry continues to navigate the complexities of race in algorithms, the importance of thoughtful and intentional decision-making in algorithm development cannot be understated. By prioritizing patient outcomes and equity in healthcare, clinicians and researchers can work towards creating algorithms that serve the best interests of all patients, regardless of their race or background. In the realm of pediatric emergency care, there has been a significant shift towards using a revised calculator developed by Shaikh, a researcher at UT Southwestern Medical Center. Johnson, a practitioner at UC Davis, attests to the effectiveness of the updated tool and notes that many of her colleagues have also adopted it.
The calculator, known as UTICalc, was initially scrutinized for its accuracy. However, Shyam Visweswaran, a clinical informatics expert at the University of Pittsburgh, raised a crucial question about its fairness. Specifically, Visweswaran and Shaikh delved into whether the calculator exhibited any biases based on race, particularly in its ability to detect urinary tract infections (UTIs) in children. The original version of the tool had shown a disparity in sensitivity between white and Black children. Yet, after removing race as a variable, the updated calculator demonstrated minimal differences in its performance.
Shaikh expressed surprise at the positive impact of eliminating race from the equation, stating that it actually improved the tool’s functionality. This revelation prompted Visweswaran to embark on a broader examination of race-based algorithms in the medical field. Together with his colleagues, he compiled a database consisting of 48 algorithms across various clinical domains, all of which relied on vague racial categories lacking genetic basis.
The inadequacy of these algorithms came to the forefront during a gathering in Washington, D.C. In June, where healthcare professionals and policymakers convened to address racial biases embedded in medical practices. Despite the shared commitment to rectifying these issues, the attendees encountered challenges in revising existing algorithms and guidelines. Shazia Siddique, a health systems researcher from the University of Pennsylvania, underscored the perpetual generation of biased guidelines amid a broader reluctance within certain medical specialties to confront racial disparities.
The complexity of dismantling discriminatory algorithms was further highlighted by the need for enhanced data and scientific input. While philanthropic grants have supported initiatives aimed at revising race-based approaches in healthcare, the sheer volume of algorithms requiring revision poses a formidable task. Calls were made for scientific journals and funding agencies to spearhead data-driven improvements in algorithmic design.
Although efforts to address discriminatory algorithms have gained momentum, the responsibility for effecting change remains decentralized. Federal agencies such as the National Institutes of Health have largely deferred this task to clinical scientists and medical societies. A recent rule issued by the Department of Health and Human Services prohibits discrimination through patient care decision-support tools, signaling a regulatory push towards algorithmic equity. However, stakeholders remain cautious about the rule’s efficacy in driving widespread reform.
As the healthcare community grapples with the implications of discriminatory algorithms, the onus falls on providers to navigate these complex issues. Difficult conversations surrounding algorithmic fairness and racial biases will persist within clinical settings, medical societies, and healthcare institutions. Despite the challenges ahead, practitioners like Rosen from Boston Children’s Hospital remain committed to fostering equitable and inclusive healthcare practices, underscoring the ongoing importance of addressing algorithmic biases in medicine. The debate surrounding the use of race and ethnicity in medical decision-making is a complex and contentious issue. Some argue that there are clear racial and ethnic associations in certain health conditions, while others believe that using race and ethnicity in treatment pathways is inherently racist. This dichotomy has created a divide in the medical community, with passionate arguments on both sides.
However, there is a way to move forward and make progress on this issue. According to research, clinicians can address the issue of race with rigor and open themselves up to the nuances of the topic. By acknowledging the complexity of race and ethnicity in healthcare, people on both sides of the debate can be humbled and have their intensity of emotion tempered.
One example of progress in this area is the identification and treatment of urinary tract infections (UTIs) in children. Previously, the race of a child may have influenced whether or not their UTI was accurately diagnosed. However, with a more nuanced approach that takes into account various factors beyond race, such as symptoms and medical history, clinicians can now ensure that a child’s race does not impact the quality of care they receive.
It is crucial for healthcare professionals to approach the issue of race with sensitivity and an understanding of its complexities. By doing so, they can ensure that all patients receive equitable and effective treatment, regardless of their race or ethnicity. This approach not only benefits individual patients but also contributes to addressing health inequities on a larger scale.
STAT’s coverage of health inequities is supported by a grant from the Commonwealth Fund. The financial supporters of STAT are not involved in any decisions about their journalism. This commitment to unbiased reporting ensures that important issues like race and ethnicity in healthcare are addressed with integrity and accuracy. Are you looking for a new adventure? How about exploring the great outdoors and experiencing the beauty of nature up close? Camping is a fantastic way to disconnect from the hustle and bustle of everyday life and reconnect with the natural world.
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