Black Patients Matter in Neurology

Abstract

Black people living in the United States suffer disproportionate morbidity and mortality across a wide range of neurologic conditions. Despite common conceptions to the contrary, “race” is a socially defined construct with little genetic validity. Therefore, racial health inequities in neurology (“neurodisparities”) are not a consequence of biologic differences between races. Instead, racism and associated social determinants of health are the root of neurodisparities. To date, many neurologists have neglected racism as a root cause of neurologic disease, further perpetuating the problem. Structural racism, largely ignored in current neurologic practice and policy, drives neurodisparities through mediators such as excessive poverty, inferior health insurance, and poorer access to neurologic and preventative care. Interpersonal racism (implicit or explicit) and associated discriminatory practices in neurologic research, workforce advancement, and medical education also exacerbate neurodisparities. Neurologists cannot fulfill their professional and ethical responsibility to care for Black patients without understanding how racism, not biologic race, drives neurodisparities. In our review of race, racism, and race-based disparities in neurology, we highlight the current literature on neurodisparities across a wide range of neurologic conditions and focus on racism as the root cause. We discuss why all neurologists are ethically and professionally obligated to actively promote measures to counteract racism. We conclude with a call for actions that should be implemented by individual neurologists and professional neurologic organizations to mitigate racism and work towards health equity in neurology.

Black people living in the United States suffer excessive morbidity and mortality compared with White Americans, including disproportionately poor outcomes across a range of neurologic conditions. Although the fundamental causes of these racial disparities in health outcomes are complex, they are rooted in racism and racist systems that result in structural inequity, poverty and disadvantage, and unequal treatment within the health care system.¹ Socioeconomic variables like income and education are widely understood to influence neurologic outcome. Yet, racism as a proximate cause of race-based disparities in neurologic disease, or “neurodisparities” is rarely mentioned.

This study surveys race, racism, and race-based disparities in neurology, to increase awareness among neurologists with respect to the relationship between racism and racial disparities in neurologic disease. We first review the history of race and racism in the United States to situate neurodisparities in historical context. We then discuss why neurologists, academic institutions, and professional organizations have professional and ethical obligations to counter racial injustice and mitigate neurodisparities—a duty which has heretofore been neglected. We conclude by recommending concrete actions to advance racial equity in neurology.

Of note, this study specifically focuses on the experience of Black people living in the United States and the different forms of racism that manifest as poor neurologic outcomes for Black patients in neurology. Needless to say, other groups also experience discrimination and disadvantage. We do not mean to diminish or ignore the discrimination experienced by persons of other minoritized populations, but that discussion is beyond the scope of this study.

Racial Inequity Is Rooted in Racism, Not Interracial Variation

To understand the relationship between race, racism, and racial neurodisparities, it is essential to have a clear understanding of the history of racial classifications. Carl Linnaeus, the father of taxonomy, first divided Homo sapiens into “varieties.” He classified humans hierarchically, with Europeans—characterized by wisdom—at the top and Africans—characterized by laziness and caprice—at the bottom.^2,3 Contemporary social and medical categorizations of humans rely on the concept of “race” and similarly divide populations according to major continental divisions (i.e., Asian, European, and African) or based on skin color (e.g., Black and White). The names and number of human “races” have changed over time and varied across cultural contexts, demonstrating that race is a social construct that does not reflect inherent biological categories.

There is a common misconception that racial categories accurately describe human genetic variation.³ In reality, human genetic variation is clinal, or continuous, across geographic regions, and not discrete, as it is often conceptualized.^3,4 Furthermore, human genetic variation is greater within (socially defined) human races than between them.⁵ Although some allelic clusters and associated biological variation result from population bottlenecks and natural selection to particular environmental pressures, these clusters are generally small and not present on continental scales. In fact, because our species evolved in Africa, with serial founder groups emigrating elsewhere, the greatest pool of human genetic variation is found among populations who inhabit the African continent.⁶ Consequently, socially defined race, such as that based on continent of origin, is generally not useful for inferring an individual patient's genotype. For example, both African Americans and Latin Americans show substantial European genetic ancestry, and some self-reported African Americans have over 95% European ancestry.⁷ More genetically accurate racial categorization might be possible if dozens of racial categories were routinely defined, instead of a few continent-sized categories, but this detailed biologic racial subtyping does not reflect current practice.

Patterns of human biology, including neurologic outcomes, are strongly influenced by environmental experiences. Rather than reflecting differences due to biological “race,” neurodisparities largely reflect historical and contemporary population differences in experiencing racism. For example, 12.5 million Africans were forcibly transported to the Americas as enslaved people from the 16th to 19th centuries, although many died before arrival. Trade continued even after importation was prohibited in 1808. Black Americans remained the target of discriminatory policies after issuance of the Emancipation Proclamation in 1863 and enactment of the 13th–15th Amendments to the Constitution (1865–1870). This institutionalized discrimination took place legally under Jim Crow laws from 1877 until the enactment of the Civil Rights era legislation (the Civil Rights Act of 1964, Voting Rights Act of 1965, and Fair Housing Act of 1968) and through extralegal means such as targeted violence and intimidation.

Although the intent to discriminate by race has been outlawed since the 1960s, veiled, prejudicial policies remain prevalent in that they did not alter the outcomes of preexisting racist policies, such as racial disparities.⁸ Although White Americans accumulated resources over centuries, it was illegal for Black Americans to accumulate wealth for at least 350 of 400 years of American history, and disproportionately difficult in the last half century because of de facto racism and discriminatory practices, such as unequal drug law enforcement and differential incarceration rates, systematic disenfranchisement, and discriminatory lending practices.⁹ Poverty and low socioeconomic status remain the largest determinant of poor health,¹⁰ and understanding America's racist history is crucial to understanding contemporary neurodisparities.

Today, genetically invalid racial categories continue to enable racial disparities to be misattributed to biology, rather than to racist social systems. For example, higher rates of SARS-CoV-2 community transmission and death among socially disadvantaged populations were initially attributed to genetic differences in the ACE2 protein, despite little evidence linking these purported genetic differences to outcomes, rather than to social differences with established links to spreading infection, such as elevated poverty rates, multigenerational habitation, and inability to shelter-in-place.¹¹ Only after understanding racism's myriad forms,^12,13 and the fact that self-identified race does not coincide with genetic ancestry, can one understand that racial disparities in health, including neurodisparities, stem from racism—not from race.

Racial Neurodisparities and Racial Disparity Research

Racial disparities pervade neurology and have been well-studied. Noteworthy articles describing racial disparities in neurology, selected by the authors, are listed in Table 1. Compared with White patients, Black patients have poorer access to neurologic care¹⁴ and worse neurologic outcomes across subspecialties including stroke, epilepsy, Parkinson disease, dementia, headache, and others (see eReferences, links.lww.com/WNL/C32).¹⁴ This list, although not exhaustive, demonstrates that whenever studied, Black Americans experience disproportionate morbidity and mortality from neurologic disease. Nor are the gaps in clinical outcomes the only neurodisparities. Black Americans are also underrepresented in neurologic research,¹⁵ the neurologic workforce,¹⁶ and in academic leadership positions.¹⁷

Table 1.

Author-Selected Noteworthy Articles Discussing Race-Based Disparities in Access and Outcome by Subspecialty

Despite growth in research identifying neurodisparities, research analyzing their root cause—racism—remains scarce. Table 2 compares PubMed-indexed articles investigating race-related, disparity-related, and racism-related research in neurology and subspecialties. While highlighting racial disparities is important, the mismatch between disparity research and research discussing the causes of these disparities, such as racism, yields several unintended consequences. First, mentioning disparities without racisms permits misattribution because readers can incorrectly assume that disparities are due to genetic factors and inherently immutable or can erroneously assign blame to the victim.¹⁸ Naturalizing inequality in this way also blunts the urgent need for remedial action to correct the disparities. Second, the continued use of White Americans as the reference group in disparities research can normalize and perpetuate White cultural dominance (i.e., viewing the White race as the best or default race against which others are measured).¹⁸ Neurodisparities cannot be corrected without better research into racism (not race), its various forms, and its neurologic manifestation.

Table 2.

Comparison of the Number of Publications Discussing Race, Disparities, Social Determinants, Equity, and Racism in Select Topics in Neurology^a

Why Should Neurologists Care About Racial Disparities in Neurology?

Understanding that neurodisparities stem largely from racism is a first step. Neurologists must then understand the clinical, ethical, and professional reasons why we are obligated to move beyond awareness and toward active antiracist countermeasures.

From a clinical perspective, neurologists should strive to address the root causes of diseases of the nervous system. Stroke, epilepsy, and Parkinson disease are less well diagnosed and treated among African Americans, if they have access to neurologists at all. These neurodisparities document our failures as neurologic clinicians. As a matter of quality medical care, we have the duty to reduce the effects of disease within our patient population. Much of neurologists' usual effort to deliver high-quality care is overshadowed by the harms created by neurodisparities. Thus, clinical considerations alone constitute sufficient grounds for neurologists to care about neurodisparities.

A second reason arises from the ethical duty to address neurodisparities embedded in the ethical principle of distributive justice: society's systems for allocating resources and rewards based on concepts of fairness and desert. Justice is a core principle of biomedical ethics, taught in foundational medical ethics curricula throughout the world. This principle governs the equitable distribution of societal goods and services such that each person receives a fair share of limited resources according to one or more of the following criteria: (1) individual need, (2) individual effort, (3) societal contribution, (4) merit or deservedness, and (5) personal contribution that satisfies whatever is desired by others in free-market exchanges.¹⁹ The appropriate weight accorded to any of these factors varies by political philosophy such as utilitarianism, libertarianism, and egalitarianism.²⁰ Egalitarianism, championed by John Rawls, emphasizes fairness through impartiality and equal opportunity. Rawls argued that society has the duty to devise ways to respect the innate equality of all individuals despite obvious differences in their birth, luck, ability, and social factors that have led to pervasive inequalities. Although we cannot eliminate inequity, we can ensure fairness by designing systems that allow all individuals an equal opportunity to succeed.²¹ Codes of biomedical ethics, according to which all neurologists are obligated to practice, require that physicians incorporate considerations of justice into our decisions. Neurodisparities reflect injustice that we are ethically obligated to correct.

The third reason centers on medical professionalism. The principles and duties that physicians espouse are stipulated in codes of professional conduct such as the American Medical Association (AMA) Code of Medical Ethics and the American Academy of Neurology (AAN) Code of Professional Conduct. The AMA Code of Medical Ethics, Opinion 8.5 states, in relevant part: “Physicians should: examine their own practices to ensure that inappropriate considerations about race, gender identity, sexual orientation, sociodemographic factors, or other nonclinical factors, do not affect clinical judgment”, and “work to eliminate biased behavior toward patients by other health care professionals and staff who come into contact with patients”. This is because “[t]he medical profession has an ethical responsibility to: help increase awareness of health care disparities; strive to increase the diversity of the physician workforce as a step toward reducing health care disparities; and support research that examines health care disparities…”²² To date, many neurologists have been remiss in fulfilling our clinical, ethical, and professional responsibilities to actively combat the racism that underlies neurodisparities.

How Neurologists Can Mitigate Racial Inequity, or How to Be an Antiracist

Although important, consensus statements opposing racism and studies describing neurodisparities are insufficient given neurologists' professional and ethical obligations to act. To advance racial equity, a sustained, multipronged antiracist approach is necessary. Antiracism refers to actively identifying and fighting against racist systems and practices, in contrast to just avoiding racism in one's own individual actions. To mitigate racial inequity, antiracist activities must cut across neurologic practice, medical education, research, and policy.

Antiracism in Neurologic Practice

At the level of the individual neurologist, addressing interpersonal or interpersonally mediated racism, which includes explicit and implicit (unconscious) bias,¹² is a critical first step. Because even the most egalitarian individuals have unconscious biases, reducing unequal treatment requires active cognitive strategies to mitigate bias.²³ Use of objective algorithms over heuristic decision-making may ameliorate bias, but many widespread algorithms derive from racially-biased data and, therefore, perversely perpetuate racial disparities.²⁴ Limiting bias begins with each neurologist taking personal responsibility for understanding the legacy of racism in American medicine, to avoid perpetuating it.

“Color blindness,” or treating all races equally, is a myth and an untenable strategy: first, because it is impossible to ignore obvious physical attributes and second, because treating Black people the same as other races ignores historical transgressions that underlie contemporary racial disparities and encourages victim blaming.^18,25 Instead, neurologists must strive to improve critical self-awareness of their own identity in society and the associated advantages and disadvantages. This awareness permits better avoidance of microaggressions²⁶ and improves care of patients, colleagues, and others with marginalized racial status.

Neurologists should also embrace structural competency training²⁷ alongside traditional neurologic education. Structural competency is the trained ability to identify upstream structural drivers of health. Inherent to structural competency is developing an “extra-clinical language” that shifts emphasis beyond patients toward the social structures that influence health and destigmatizes cultural factors. Neurologists must move beyond “vices” when taking a social history and screen for social factors that contribute to many neurologic diseases, such as poverty, exposure to pollution (a factor influenced by residential discrimination), and access to care. The Structural Vulnerability Assessment Tool is one such resource to consider.²⁸ Neurologists can advocate for changes to existing workflows or electronic medical record systems so that members of the health care team could collect this information and neurologists could be automatically alerted about relevant socioeconomic factors for their patients. In turn, to allow for interventions that target such factors, neurologists should advocate for health organizations (such as insurance companies and accountable care organizations) to take a more active role in addressing modifiable social determinants of health, such as food insecurity.

Neurologic practices and departments can also identify and ameliorate policies that encourage inequitable care delivery. For instance, how do patients' socioeconomic level, insurance status, and other social determinants of health result in unequal care, stratified along racial lines?¹⁴ Solutions will differ by individualized practice but may include community-based clinics or outreach clinics in “neurology deserts” to improve access for underserved communities unable to take time off work or travel to a tertiary care center. Groups could better accommodate working patients with limited social support by accepting Medicaid, adopting telephone visits, and expanding nighttime and weekend hours. Neurologic organizations must also develop and adopt health equity metrics, to empower tracking and improvement of racial equity. Considering non-relative value unit–based models of compensation is warranted because fee-for-service penalizes clinicians who see patients with high “no-show” rates because of complex social factors or those who engage in noncompensated outreach to underserved communities. Similarly, neurologic organizations should advocate for private and public payers to similarly divest from models that disincentivize care for disadvantaged populations.

Antiracism in Neurologic Education

To truly address neurodisparities, neurology educators must embrace equity as a central value and focus on building internal programs to support diversity, inclusion, and antiracism efforts. Recent years have witnessed the appointment of diversity officers in neurology departments across the United States. For these advocates to succeed, departments must offer them the time, resources, and influence required to be effective²⁹ while acknowledging that antiracist efforts must be systemic and heavily reliant on the efforts of White Americans. Without this support, an unfair burden (a “diversity tax”) is placed on already marginalized individuals, who are often asked to commit to these efforts with little or no compensation or professional recognition.²⁹

Neurology departments and professional organizations should take the lead in educating all their members about racism and racial neurodisparities. These efforts could include incorporation of neurodisparities material in trainee curricula; inclusion of health disparity and equity topics in faculty meetings, grand rounds presentations, and national conferences; and avenues for critical self-reflection around bias for all department members.²⁹ Neurology departments must also take concerted, measurable steps to enhance recruitment and retainment of underrepresented trainees and faculty members and carefully track outcomes.³⁰ Eliminating certain admission requirements that facilitate bias—especially those that are subjective or not predictive of future success in the field—can help equalize opportunity for diverse applicants to residency.³¹ Academic neurologists should advocate for eliminating the discriminatory practice of overreliance on test scores and grade point averages for medical school and residency admission because achievement on these tests depends on precollege education and access to tutors and standardized test preparation classes. Growth, rather than absolute scores in early education, should be highly valued instead. In addition, advancement metrics that incorporate patient reviews and thereby institutionalize racism should be reconsidered because physicians of marginalized backgrounds (including women) are often rated lower because of racist (and misogynist) patients' biases.³² Departments should develop robust mentorship efforts and professional development resources to help faculty and trainees of marginalized backgrounds surmount barriers to professional success. Additional steps include identifying pay gaps between groups of individuals performing the same roles in a department and promoting transparency as a strategy to mitigate wage gaps.³³ In addition, neurology journals and editors should standardize guidelines for how best to address race in research publications and should consider race and racial equity issues as part of the standard review process.

Antiracism in Neurologic Research

Analogous to other neurologic focus areas, neurodisparities must be addressed through innovations in biomedical research, including health services research and implementation science. Non-White persons are critically underrepresented in translational and clinical research studies in migraine,¹⁵ dementia,³⁴ epilepsy,³⁵ and many other neurologic disorders. Addressing neurodisparities requires improving participation of historically underrepresented groups in research, adopting novel research methods, and supporting researchers engaged in disparities and antiracism research.

Community-based participatory research (CBPR) is one approach that improves engagement of underrepresented populations in medical research and may help to overcome the mismatch between researchers' goals and methods and the needs of the Black community and other marginalized groups.³⁶ CBPR centers on a partnership between community members and the academic team, who share responsibility in intervention development, implementation, and analysis. CBPR has been used successfully to engage marginalized populations in stroke research,³⁷ but it is not applied broadly in neurology. The use of community health workers and paraprofessionals is another approach, which can improve participation of underrepresented research populations, produce better research, and improve research clarity and engagement.¹

In addition to these research methods, it is crucial to recruit and support investigators of marginalized backgrounds and researchers specifically focused on eliminating neurodisparity. Black researchers are significantly less likely (10.7%) than White researchers (17.7%) to be awarded NIH R01 grants.³⁸ Established funding in-part determines inclusion as a grant reviewer, further perpetuating tendency to underfund certain underrepresented disciplines.³⁹ Studies suggest that Black investigators are more likely to design research that operates at the community level.⁴⁰ Community-partnered research, focusing on intervention, implementation science, and public health as opposed to mechanistic research, is more likely to help disadvantaged populations. Funding agencies have a responsibility to better align funding priorities with public health need, and academic leaders in neurology who help allocate research funding should promote it. Specific recommendations that will improve health disparities research include (1) having experts in health disparities on every grant review committee; (2) diversifying the pool of peer reviewers by race and ethnicity (only 2.4% of peer reviewers at NIH are Black as of 2019)⁴⁰; (3) designating a proportion of research within each institute that must address health disparities; and (4) expanding funding for investigators who study health disparities.³⁹ To eliminate race-based disparities, funding agencies must shift their priority to focus on the underlying modifiable factors.

Antiracism in Neurologic Policy

Ultimately, for equity to be achieved in neurology at the national or international scales, professional societies must also work to dismantle disparities and racism. Organizations such as the AAN and the American Neurologic Association (ANA) will need to enhance their focus on neurologic disparities in meetings, symposia, and continuing medical education offerings for members.²³ Academic journals must ensure that health disparities and equity are explicit foci.⁴¹ Editorial staff can work to eliminate the pervasive and pernicious misattribution of race as biological construct, instead highlighting work that relates racism and social-structural health determinants to neurodisparities. Professional organizations committed to equity must also make significant and enduring changes in organizational leadership to enhance diversity at the highest echelons. Recent years have seen substantive changes along these lines by organizations such as the AAN and ANA, which augers further future positive developments.⁴²

Finally, professional organizations, institutions, and individual neurologists must all advocate for policy changes to combat racism and eliminate neurodisparities. Examples of important advocacy work include the expansion of funding for disparities and antiracism-related research and lobbying for reimbursement practice changes (e.g., increasing Medicaid reimbursement for outpatient and preventative care, reimbursing telephone visits, and encouraging more equitable allocation of specialists to underserved areas) to encourage better access to care and outcomes for marginalized populations. There are also opportunities for individual-level advocacy efforts, where neurologists acting as citizens can contact Congress, write journalistic opinion pieces, and join grassroots advocacy efforts. These may include leveraging one's specific neurology expertise to spur policy changes that are “larger than neurology,” as in the case of advocating to prevent the use of carotid restraints by law enforcement.⁴³

Afterword

In 1966, Dr. Martin Luther King Jr. declared “Of all the forms of inequality, injustice in health is the most shocking and the most inhuman because it often results in physical death.”⁴⁴ The neurology community has a duty to ameliorate neurodisparities, and the shocking and inhumane injustice they represent. Antiracist equity efforts must ultimately be embraced by all neurologists, as “everyone's issue,” rather than relegated to a limited subset of invested professionals.

Glossary

AAN

American Academy of Neurology

AMA

American Medical Association

ANA

American Neurologic Association

CBPR

Community-based participatory research

Appendix. Authors

Study Funding

Dartmouth Swigart Clinical Ethics Fellowship.

Disclosure

N.M. Robbins receives research funding from the Swigart Ethics Fellowship, the Alexander Reeves Foundation, the Diamond Foundation, and Brain Chemistry Labs/Institute for Ethnomedicine. He receives personal compensation for market research consultation and medicolegal consulting activities, which are unrelated to the current manuscript. L. Charleston has received personal compensation for serving as a consultant for Allergan/AbbVie, Alder/Lundbeck, Amneal, Biohaven, Satsuma and Teva; is on the advisory panel for Ctrl M Health (stock); received grant support from the Disparities in Headache Advisory Council; and served as an Expert Witness for Vaccine Injury Compensation Program. He is a noncompensated associate editor for Headache: The Journal of Head and Face Pain and serves as a noncompensated Board Member-at-Large for the Alliance for Headache Disorders Advocacy and the Clinical Neurologic Society of America. A. Saadi serves on the American Academy of Neurology Inclusion, Diversity, Equity, Anti-racism and Social Justice Subcommittee; received research support from the Rappaport Foundation, National Science Foundation, Russel Sage Foundation, Physicians for Human Rights, and the American Academy of Neurology. Z. Thayer reports no disclosures relevant to the manuscript. She is a faculty member for the Increasing Diversity in Evolutionary Anthropologic Sciences (IDEAS) program and serves on the Committee on Opportunities in Science for the American Association for the Advancement of Science. W. U. Codrington reports no disclosures relevant to the manuscript. A. Landry serves as the President of the Academy for Diversity Inclusion in Emergency Medicine for the Society of Academic Emergency Medicine. J. Bernat reports no disclosures relevant to the manuscript. R. Hamilton has received personal compensation as a speaker on the topics of diversity, equity, and inclusion for Starfish Neuroscience and Alexion Pharmaceuticals. He receives compensation as an Associate Editor for Equity, Diversity, and Inclusion for the journals Neurology, Neurology Neuroimmunology and Neuroimmunology, Neurology Clinical Practice, and Neurology Genetics. He serves as a noncompensated Senior Editor for the journal Neurobiology of Language and a noncompensated Associate Editor for Frontiers in Neuroergonomics. He is an uncompensated member of the editorial boards of the journals Restorative Neurology and Neuroscience and Cognitive and Behavioral Neurology. He has received research grant support from the NIH, Department of the Army, Robert Wood Johnson Foundation, Dana Foundation, Templeton Foundation, and the Association for Frontotemporal Dementia. Go to Neurology.org/N for full disclosures.