Abstract
This article highlights that the standardization of medical care in the U.S. relies on clinical practice guidelines (CPGs), which indicate institutionalized norms about when and under what circumstances it is appropriate to administer specific medical tests and courses of treatment. However, when CPGs in medicine derive from medical research that was informed by since-debunked ideas about race, they may also facilitate structural racism.
The idea that socially-constructed racial groups are physiologically distinct from each other has persisted—despite all evidence to the contrary—within medical science for centuries. Issues of individual implicit bias at the micro-level, and issues such as access to care and the cumulative health consequences of systemic racism at the macro-level, can contribute in different ways to racialized health disparities. In between those larger socio-structural forces and individual interactions, however, there are also meso-level mechanisms through which the idea of “race-as-biology” can exacerbate inequitable outcomes in ways that are often unaccounted for in health disparities research. One such mechanism is that of racialized clinical practice guidelines (CPGs).
What are CPGs?
When you go to the doctor and describe how you feel, you probably assume that your symptoms and your body’s individual factors (age, family history, pre-existing conditions, and the like) guide the physician’s decisions about your care. And they do. However, so do established decision-making nodes, codified in the form of clinical practice guidelines (CPGs). CPGs guide the calculus behind each patient’s eligibility for tests and treatments. As medical sociologists Stefan Timmermans and Steven Epstein describe, CPGs are meant to help standardize clinical medicine, indicating institutionalized norms about when and under what circumstances particular forms of care are appropriate. These inward-facing rules represent “best practices” in the professional medical community—they are written for doctors, by doctors.
Clinical practice guidelines CPGs guide the calculus behind each patient’s eligibility for tests and treatments.
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Few patients are aware of how CPGs shape their medical experiences. Even less apparent is the outsized role of race in certain guidelines. CPGs that use race as a proxy for biology in clinical decision-making contribute to already stark disparities in health outcomes. Specifically, when illness thresholds for receiving testing and treatment are higher for Black patients than for others, CPGs act as what sociologist Alyasah Sewell calls “racist relational structures”—mecha- nisms for reproducing the racist allocation of resources. As each stage of medical intervention introduces new opportunities for racially disparate treatment, it becomes predictable that health outcomes also diverge for patients in differently racialized groups.
When you go to the doctor and describe how you feel, you probably assume that your symptoms and your body’s individual factors (age, family history, pre-existing conditions, and the like) guide the physician’s decisions about your care. And they do. However, so do established decision-making nodes, codified in the form of clinical practice guidelines (CPGs).
Issues of individual implicit bias at the micro-level, access to care, and the cumulative health consequences of systemic racism at the macro-level, can contribute to issues of racialized health inequities.
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The scaffolding of these problematic patterns is largely epistemological. To formulate CPGs, teams of medical experts carefully review existing medical literature—including canonical, pioneering work on particular illness conditions. While some understandings of human physiology and illnesses yielded by foundational studies have stood the test of time, the same can rarely be said about the ways that racial categories were conceptualized in their respective study designs. Medical research is always entrenched in the historical contexts within which it is undertaken—and as such has been inflected with misguided notions about race and racial categories, both socially and politically constructed throughout its history. Beyond the fact that racial categories vary over time and across cultural and geographic contexts, problematic methodological issues in past research may include unclear criteria for allocation of patients to racial groups, operationalizing racial categories as mutually exclusive without accounting for multi-racial identities, failing to control for socio-economic status when drawing racialized conclusions, and collapsing underrepresented racial group data into conglomerate categories to simplify analyses and recommendations. Data and analyses derived using outdated racial constructs may yield “findings” supposedly related to race that would not hold muster with regard to contemporary standards of scholarly rigor. A problem arises, then, when conclusions drawn from these methodologically problematic past studies are used to shape standards for contemporary medical practice, without taking into accountJthe limitations of what they can legitimately claim to represent concerning racial differences.
While some understandings of human physiology and illnesses yielded by foundational studies have stood the test of time, the same can rarely be said about the ways that racial categories were conceptualized in their respective study designs.
Racialized CPGS in Practice
In 2020, my colleagues—pediatricians Rachel H. Kowalsky and Shari Platt—and I critiqued an American Academy of Pediatrics CPG for urinary tract infection (UTI) testing in JAMA Pediatrics. UTI occurs when bacteria enter the urethra. Logically, the only way for that “race” could confer biological protection against UTI would be if the physiological structure of the urethra somehow differed between racial groups. Spoiler alert: it does not. Nor, for that matter, is there any physiological trait that is both universally and exclusively present in all members of any single socially designated racial group.
Yet, in the guideline, “White” or “Nonblack” race has been listed alongside quantifiable biological indicators required for a pediatric patient to be eligible for a UTI test, when another source of infection has not been found. Black infants and children must therefore present “worse” symptoms than their White peers in order to receive testing; their fevers must be higher and last longer, to compensate for not meeting the racial criteria for testing eligibility. Perhaps unsurprisingly, the research cited in this guideline suffers several of the aforementioned methodological pitfalls in operationalizing race.
If you’ve ever had a UTI, you probably know that it can become increasingly painful over time. Certainly, the risk that a testing protocol may lead to Black children experiencing unnecessary pain, even in the short term, is inequitable. In the long term, untreated UTI can also cause renal scarring—a risk factor for later life hypertension and kidney failure, both of which disproportionately affect and kill Black Americans, who develop them at a younger age, to a greater degree of severity, at higher rates than their White counterparts.
This begs the question, “Shouldn’t medical protocols for a treatable condition that is more likely to cause long-term harm to a particular population be focused on increasing access to early testing for that population, rather than doing the opposite?”
One would think. As it happens, the UTI CPG is far from the only “standard” that requires higher illness thresholds for patients of color to receive care. In the New England Journal of Medicine, physicians Darshali A. Vyas, Leo G. Eisenstein, and David S. Jones report that examples of similarly racialized protocols are standardized through clinical algorithms in the fields of cardiology, nephrology, obstetrics, and urology—all of which are specialty areas in which we find well-documented racial inequities in health outcomes.
Given our privatized U.S. healthcare and insurance systems, racialized CPGs also raise economic justice concerns. A 2020 New York Times article by journalist Ken Belson reported that insurance payouts made to retired NFL players who suffered concussive head injuries are racially inequitable. It turns out that the systematic assessment of dementia severity was guided by an “industry standard” scale that used “race-norming” to require a higher threshold of demonstrated damage to the cognitive functioning of Black players than is required of their white counterparts to receive to similar compensation—reflecting the debunked, racist myth that a lower level of cognitive functioning is “normal” for Black people’s brains to begin with. In June of 2021, the Associated Press reported that the NFL would permanently halt the racialization of insurance benefit eligibility, reaching a $1 billion settlement in brain injury claims from retired Black players previously denied payouts on the basis of race.
Remaking the Guidelines
The solution is not to stop using racial categories in medical science; misguided attempts to make scientific research “colorblind” would obscure the profound impact of racism on health inequities. There is a crucial difference between an epidemiological study’s use of race as a proxy for the health consequences of racism in socially defined groups, and a guideline’s reliance upon decontextualized and inappropriately extrapolated group-level data to treat race as a biologically significant, individual risk stratifier in assessment and diagnostic instruments.
Ideally, the former helps point to where and how we can best allocate resources to structurally vulnerable populations. The latter, however, risks redirecting testing and treatment resources away from individual patients within medically underserved populations, drawing on two persistent, albeit seemingly contradictory, sets of myths concerning race and biological difference. Racial invulnerability myths function to delay or deny preventive and diagnostic interventions (such as medical testing) to patients of color with symptoms or risk factors comparable to their white counterparts, by predetermining such care to be “unnecessary”—as in the UTI example. Racial inferiority myths function to delay or deny therapeutic interventions (such as medication or surgical procedures) to patients of color that their white counterparts can more readily access, by codifying worse health conditions for patients of color as “normal”—as in the NFL cognitive function and brain damage assessments. When health insurance coverage eligibility is also derived from the “conventional wisdom” that medical CPGs represent, barriers to appropriate care include prohibitive costs associated with testing and treatment that is not indicated as necessary or appropriate according to “best practices.”
American medical science remains long past due for a comprehensive reckoning with how its past misconceptions about race have bequeathed the “race-as-biology” paradigm to clinical practice via the institutionalization of racially inflected CPGs in all areas of care delivery.
The racialization of medical protocols exacerbates health inequities in ways that are literally incalculable—they are difficult, if not impossible, to measure. We can’t accurately compare illness rates between populations that are not tested and treated based on the same symptomatic criteria, precisely because we have less data on the group being tested less often and treated less readily. We also can’t clearly assess the damage inflicted upon the undertested group via delayed or denied care, given that there are no counterfactual data that can demonstrate how much sooner they could have potentially benefited from equitable protocols.
There are signs that the gravity of these concerns is beginning to find purchase within the medical community. In June of 2021, the AAP finally announced that the UTI guideline will be “retired” due to the “improper use of race” in its formulation. This decision bears far-reaching implications for advancing equity in pediatric care.
Nonetheless, American medical science remains long past due for a comprehensive reckoning with how its past misconceptions about race have bequeathed the “race-as-biology” paradigm to clinical practice via the institutionalization of racially inflected CPGs in all areas of care delivery. This past year, the NIH, the AMA, and the AAP have made public commitments to work towards mitigating racial inequities in medical care. While all have laid out plans for changes to be made in developing operating procedures and research guidelines for the future, it remains to be seen how these organizations will address the codified inequities currently in use for existing CPGs. Disentangling contemporary praxis from the racism historically embedded in medical “knowledge” is a necessary if not sufficient condition if we are to make meaningful progress in excising the reproduction of structural racism through health care in the future.