Kim N. Racial Disparities in Neurological Care in the United States: An Internal Mechanism. Harvard Public Health Review. 2021; 32.
The COVID-19 pandemic highlights the need for equitable access to healthcare across all ethnic groups in the United States. Given that COVID-19 patients often experience neurological symptoms, there is a need to reevaluate the accessibility of neurological care in the United States. This paper explores the reasons behind the lack of neurological care in Black, Asian, and minority ethnic groups (BAME). After exploring existing literature and case studies, this paper ultimately concludes that the systemic referral process and lack of advocacy in BAME communities act as an internal feedback loop, heightening racial inequality within the neurological healthcare system. The paper will then discuss the implications of this internal feedback loop, addressing the causal mechanism for racial disparities specific to healthcare providers.
For many COVID-19 patients that have recovered, aftereffects of the illness manifests through neurological symptoms including “persistent headaches, brain fog, and cognitive difficulties” (Pacheco, 2020). Coupled with these neurological complications, post-COVID19 stroke is a fatal neurological and cerebrovascular complication (Katz et al., 2020). A study found that among 236,379 patients diagnosed with COVID-19, the incidence rate of neurological or psychiatric diagnosis in the following 6 months was 33.62% (Taquet et al., 2021).
While many studies have established that black and minority ethnic (BAME) individuals are more severely impacted by COVID-19, recent reports find that BAME patients are also more likely to experience a stroke following their diagnosis of COVID-19 (Sadeghi et al., 2020). Some experts point towards the prevalence of conditions such as diabetes and low-density lipoproteins in BAME patients to explain this increased risk of stroke (Sadeghi et al., 2020). However, other studies argue that access to care and geographical differences are primary reasons for increased neurological incidence of COVID-19 related stroke (Dmytriw et al., 2020).
The COVID-19 pandemic is not the first time that there have been such clear racial disparities within neurological care in the United States. Since the 1970s, people of color have had higher incidence rates for stroke compared to white people (The Lancet, 2020). Additionally, Black and Hispanic people are up to 40% less likely than white people to see a neurologist, with Black people being more likely to be treated in the emergency department rather than in-patient hospital visits (Saadi et al., 2017). This problem becomes especially concerning given that “Black and Hispanic people are more likely to be diagnosed with multiple sclerosis (MS), Parkinson’s disease, or epilepsy and to report having fair or poor overall health and mental health” (Kneisel, 2017).
With underlying racial disparities in neurological care, it is no surprise that the COVID-19 pandemic, already having affected minority populations disproportionately, would exacerbate this inequality. Given the increased risk of post-COVID19 neurological complications for BAME groups, how can we explain the systemic reasons behind heightened racial inequality in neurological care in the United States?
There are varying perspectives surrounding this question. Some studies argue that these racial disparities arise on the end of the healthcare-provider, within neurological care itself, in the form of less-aggressive treatment and underrepresented ethnicities in neurological research (Ferdinand et al., 2017). Others find that the systemic referral process acts as a barrier when BAME patients attempt to receive care (Saadi et al., 2017). Finally, studies have also argued that the lack of advocacy within BAME communities leads to less awareness of neurological diseases, essentially limiting access (Lindroff, 2017).
To answer this research question, this paper conducts a review of case studies analyzing racial inequality in neurological disease outcomes, specifically focusing on the relationships between the approaches identified above. Ultimately, this paper argues that the systemic referral process and lack of advocacy in BAME communities act as an internal feedback loop, heightening racial inequality within the neurological healthcare system. This internal feedback loop then results in a causal mechanism for racial disparities in healthcare-providers.
Before delving into the different perspectives, there is a necessity to understand the general neurological healthcare system in the United States as well as the statistical frameworks that evaluate the degree of racial inequality.
In the United States, a patient is required to first visit a primary care physician prior to receiving specialized care. Upon the first visit, a primary care physician will determine whether a follow-up visitation to a specialist or certain medical services is necessary. If so, the primary care physician provides a written order that refers the patient accordingly. This process raises a series of concerns, including primary care physician bias, exclusion of BAME individuals in the referral process, and appointment availability (Graham, 2016). These problems will be discussed at length in the following sections.
Typically, there are three main methods to analyze racial inequality in the healthcare system. The first method is to measure implicit bias qualitatively. While there have been numerous statistically significant results that demonstrate racism among healthcare providers in minority groups, there is little known about the extent of healthcare provider racism or how to best prevent and measure it (Paradies, Truong & Priest, 2014). The second method is to measure access using a demographic analysis of outpatient, inpatient, and emergency department visits (Springer, Labovitz, & Hochheiser, 2017). Unfortunately, these statistics alone make it difficult to distinguish whether the resulting racial disparity arises from the systemic inequality within the healthcare providers during the referral process, or as a result of a lack of advocacy concerning neurological diseases among BAME groups. The third method is to measure institutional racism through structural levels: individual, intra-organizational, and extra-organizational (Adkins-Jackson, Legha, & Jones, 2021).
This paper will utilize all of these methods to provide a new perspective to understand the internal feedback loop between racial inequality within the referral system and the lack of advocacy among BAME groups.
Studies have identified two main reasons for racial inequality on the end of specialized healthcare-providers: specialized physician bias and underrepresented research of minority groups in neurology. Evidence supports these claims through the severity and outcome of neurological treatments, as well as through a comprehensive analysis of how treatment options fail to address the physiological needs of BAME groups.
Specialized physician bias is apparent in the treatment of hypertension, also known as the most effective prevention strategy to manage the risk of a stroke. In the United States, stroke is one of the leading causes of mortality. Its prevalence is expected to rise in the following years, with the highest incidence rates in “white Hispanic men and black people” (The Lancet, 2020).
These incidence rates were explained through poor blood pressure control in BAME groups. Numerous findings have concluded that the reasons for poor blood pressure control involve differences in the “social determinants of health, antihypertensive medication adherence, and racism in the health-care system” (Ferdinand et al., 2017). People of color less often receive “less aggressive hypertension treatments”, which leads to a higher risk of stroke (Ferdinand et al., 2017).
A study tracked the racial and ethnic differences in acute coronary syndrome and myocardial infarction in the United States. Results demonstrated significant racial disparities in post-stroke outcomes: “Black and Mexican American people have a poorer functional status at discharge than non-Hispanic white people, even after adjustment for confounding factors” (Graham, 2016). While this study could not have accounted for all confounders (given that the study was non-randomized), these findings are still significant as they demonstrate racial bias in standardized post-stroke care.
Unfortunately, this study was not able to distinguish the reasons behind these racial disparities in post-stroke and post-operational care. By pointing out that “the underlying mechanisms are not well studied”, the study provided two possible explanations (Graham, 2016). The first explanation was “insufficient biological and physiological knowledge in these groups”, specifically due to “underrepresentation in research” (Graham, 2016). The second explanation was “differential access to healthcare” (Graham, 2016). The study made it clear that there was a need for further research before making any conclusions.
Another study corroborated the findings about neurological treatments in black and Hispanic patients. Published in the Journal of the American Academy of Neurology, this study found that “black and Latino patients suffering from neurological ailments like stroke, Parkinson’s diseases, and Alzheimer’s dementia were likely to receive significantly different and less adequate care than white patients” (Saadi et al., 2017). This “discrepancy in treatment, which impacts diagnosis, specialized care, treatment and recovery” existed even when patients of different races or ethnicity have similar “incomes, insurance coverage and levels of education (Saadi et al., 2017).
This racial disparity was also apparent in post-consult stages. A study that focused on epilepsy surgery found that “black patients were 70% less likely than white patients to undergo epilepsy surgery” (Marulanda-Londoño et al., 2019). The same results were identified in high-volume stroke centers and IV thrombolysis, with “Black, Hispanic, and Native American patients” having “decreased access” (Marulanda-Londoño et al., 2019).
It is clear that specialized physician bias is a pressing concern in neurological research. Flippen identified “education of advanced practice providers” as a critical factor to “closing gaps in neurological care” (Flippen, 2020). Additionally, he highlighted the need for “neurologists to take a hard look at practice patterns with racial and ethnic populations to mitigate as much as possible the influence of implicit bias, language barriers, and training a physician workforce that mirrors the diversity of communities” (Flippen, 2020).
While the reasons behind specialized physician bias vary, it is clear that numerous studies have found this bias as a significant factor that deters accessibility to specialized neurological care for BAME groups.
Currently, most databases that code neurological disorder overrepresent white patients and underrepresent black patients. Additionally, standardized protocols and treatment options do not include the physiological needs of BAME groups. An analysis of brain tumor clinical trials registered in New York between July 2005 and November 2017 found that “whites were significantly overrepresented in trials for metastatic brain tumors and high-grade trials” (Taha et al., 2020).
Similar findings were also present in the study of Alzheimer’s. UsAgainstAlzheimer’s, an initiative that conducts independent research, recently analyzed “more than 300 peer-reviewed studies of non-drug interventions for Alzheimer’s and dementia” (Olazarán et al., 2014). Just under “4% of them focused on communities of color” (Olazarán et al., 2014). “Overall, just 5% of the studies included even a general strategy for recruiting underrepresented communities (Olazarán et al., 2014). Given the fact that “African Americans are two to three times more likely to develop Alzhiemer’s than non-hispanic whites”, there is a problem in the way neurological research excludes BAME groups (Barnes & Bennett, 2014).
Another study that took a solution-based approach to understanding health disparities in dementia highlighted the necessity of expanding the current databases to reduce racial underrepresentation and disparity in neurological care. More specifically, by “increasing the use of these datasets or emerging administrative data with other existing survey datasets of neurological disease populations”, the healthcare system can “perform unique and powerful analyses of healthcare outcomes, inform policies to improve patient safety, and increase cost efficiency for health care systems” (Willis, 2015).
Clearly, on multiple levels of neurological care, the understanding of the physiological needs of BAME individuals is limited. However, the problems of underrepresentation and physician bias also stem from limited access to neurological care. Once the neurological healthcare system and treatments include more individuals from BAME groups, it is possible to grow our current scope of knowledge of neurological disorders and treatments that are specific to BAME groups.
Systemic racial disparity poses a large problem within the medical field of neurology. Primary physician bias results in fewer referrals for BAME individuals, meaning that systemically, fewer BAME groups are given access to specialized neurological care. Additionally, even with neurological care, various factors lead to systemic bias– including waiting times, costs, and hospital-stay lengths.
Bias among physicians is especially important as it touches upon “trust, which can strongly, and often negatively, influence the physician-patient relationship” (DeAngelis, 2019). Generally, “the race-related attitudes of both nonblack physicians and their black patients negatively affect what transpires during their medical interactions and the outcomes that follow them” (DeAngelis, 2019). This is not a new phenomenon in healthcare– racial bias among primary physicians have existed for ages. Yet, in the field of neurology, these types of biases are far more likely to occur.
Neurological care is especially prone to primary physician bias, as much of the diagnosis and referral processes are based on physician-patient interactions. Given the nature of neurological diseases such as Alzheimer’s and Parkinson’s, much of the diagnosis begins on the “physician’s interaction with the patient and the family” (Saadi, 2020).
Dr. Altaf Saadi, a neurologist and chief resident at Massachusetts General and Brigham and Women’s Hospital in Boston, emphasized the “problems of bias and unconsciously held stereotypes among both referring physicians and neurologists themselves regarding treatment of minority patients with neurological problems” (Saadi, Himmelstein, Woolhandler, & Mejia, 2017). In her study, she found that “even among people with a primary care physician, blacks and Hispanics were less likely to be referred to see a neurologist” (Saadi, Himmelstein, Woolhandler, & Mejia, 2017). Flippen corroborated this claim, agreeing on the necessity for “effective primary care physicians and providers who are adept at recognizing the need for neurological referral” (Flippen, 2020). With primary physician bias in the referral process, BAME individuals cannot access specialized care.
The effects of these biases are troubling. Lisa A. Cooper, MD, of Johns Hopkins University School of Medicine found that “physicians high in implicit bias were more likely to dominate conversations with black patients than were those lower in implicit bias”, which meant that “black patients trusted them less, had less confidence in them, and rated their quality of care as poorer” (Cooper, 2003).
While it is difficult to gauge which bias is more significant than the other (specialized or primary), it is important to note that bias at the primary physician level prohibits access to specialized care as a whole. Without referrals, it makes it more difficult for BAME groups to even receive a neurologist’s consultation.
Dr. Saadi’s study also provided an overview of systemic bias in neurological care. Using MEPS survey data, researchers identified a total of 5,890 individuals, “accounting for 13,685 outpatient visits to neurologists during the 8-year period” (Saadi et al., 2017). The most notable finding was that “of the 16% of respondents who reported living with a neurological illness, blacks had the highest number of hospital department visits, compared with both Hispanics and whites” (Saadi et al., 2017). Blacks were also “hospitalized more often, with 9.4 inpatient stays for every 100 people for blacks, and 4.5 stays for whites” (Saadi et al., 2017).
These results are especially important because they provide an overview of the current system. Typically, ethnic groups that have less access to specialized care have greater emergency department visits. This demonstrates racial disparity, as BAME groups have less referrals, but a greater number of neurology-related emergency visits.
This kind of racial disparity also has multiple dimensions. Apart from outpatient and inpatient hospital visits, hospital expenses also differed drastically. “Hospital expenses were $1,485 per capita for blacks and $599 for whites” (American Academy of Neurology, 2017). Waiting times are also significantly different according to ethnicity. One study demonstrated that “Hispanics had longer waiting times to see a physician after arriving at an ED with stroke symptoms” (Springer, Labovitz, & Hochheiser, 2017). Similarly, “blacks had significantly longer waiting times in the ED” (Springer, Labovitz, & Hochheiser, 2017). This difference in waiting times persisted even after adjusting for confounding factors such as means of transportation, urban/rural location, and non-emergency triage.
Systemic bias in neurological care comes in many different forms, including but not limited to primary physician bias, costs, waiting times, and hospital expenses.
Another important aspect that contributes to racial disparities is the lack of advocacy of neurological diseases within BAME communities. With limited neurological health literacy (understanding of symptoms and treatment options), it is difficult for BAME individuals to realize the necessity of getting neurological care.
Health literacy “refers to a person’s ability to find, comprehend, and use basic information and resources to make appropriate decisions related to his or her health” (Nielsen-Bohlman, Panzer, & Kindig, 2004). This also impacts whether the individual pursues primary physician care, and further, specialist care. Apart from racial disparities, “50 percent of adult patients with neurological disorders may have difficulty comprehending information that their physician provides to them” (Galloway, & Schafer, 2003). This can then lead to “missed appointments, errors, and lack of adherence to treatment recommendations” (Galloway, & Schafer, 2003). Therefore, neurological advocacy is pertinent for all individuals, but especially important for BAME groups that already face significant biases.
Compared with whites, black people were “nearly 30% less likely to see an outpatient neurologist” and Hispanic people were “40% less likely to see an outpatient neurologist” (Lindroff, 2017). The factors that cause these disparities are not limited to the end of the healthcare-providers. Woodhandler, a co-founder of Physicians for a National Health Program, emphasized that “there are cultural issues that could deter some blacks and Latinos from seeking out neurologists who are likely to be white and work at some relatively remote office location” (Woodhandler, 2017).
These results are also apparent in Alzheimer’s disease. As the “4th leading cause of death among African Americans”, there is a “lack of awareness among the African American community” regarding the neurological disease (Chin, Negash, & Hamilton, 2012). Numerous studies have demonstrated this problem. A survey, consisting of “predominantly caregivers and first-degree relatives of individuals with AD”, found that “significantly more African American respondents than white respondents believed substantial memory loss to be a normal aspect of aging rather than a symptom of AD” (Chin, Negash, & Hamilton, 2012).
Therefore, the lack of advocacy of neurological diseases in BAME groups is significant. Knowledge regarding the symptoms, treatment options, and insurance policies are necessary for individuals to pursue specialized care. This feeds into the systemic racial disparity within the referral process–due to less awareness about neurological diseases, BAME individuals are less inclined to seek specialized care. Even when visiting a primary physician, their concerns are often underestimated and scrutinized, resulting in a neurological care system that largely excludes BAME groups.
This paper covered three branches that cause racial disparities in neurological care: specialized healthcare providers, the referral process in neurological care, and lack of awareness of neurological diseases in BAME groups.
Before moving onto a more in-depth analysis regarding these three approaches, it is important to understand the nature of neurological care. As identified through examples such as Alzheimer’s, dementia, and Parkinson’s, the treatment and diagnosis of these neurological diseases are largely reliant on patient-physician relationships. This makes it more likely that neurological care is affected by physician bias, both primary and specialized.
The connections between these three approaches better explain the systemic reasons behind racial disparities in neurological care in the United States. The referral process in neurological care and lack of awareness of neurological diseases in BAME groups form an internal feedback loop that excludes BAME individuals from neurological care. This mechanism results in an accessibility barrier in specialized neurological services. This then brings forth a causation mechanism that heightens racial disparity on the end of specialized healthcare providers.
This internal feedback loop is problematic, as it limits the number of BAME individuals that can even utilize specialized neurological care. The lack of awareness surrounding neurological diseases in BAME groups inhibits the number of people who seek care to begin with. Coupled with primary physician racial bias in the referral process as well as the disparities in costs, waiting times, and accessibility, it is no surprise that BAME groups are excluded from specialized neurological care.
This then acts as a causation mechanism that results in racial disparities in research and specialized neurological care. As established above, for there to be more treatments and research of BAME groups in the neurological field, there needs to be more BAME individuals involved in care, treatment, and clinical trials. However, because the number of BAME individuals that receive this type of neurological care is limited, it makes it difficult for specialized healthcare providers to pursue further research. Additionally, bias in specialized neurological physicians is often seen as a result of a white majority patient-physician population. These measures need to be addressed systematically, but that can only occur after more BAME individuals are utilizing neurological care.
For neurological care to be accessible, the internal feedback loop must come to an end. There are two measures that need to be implemented for this to begin. The first is to increase the advocacy of neurological diseases in BAME communities. For example, increasing awareness of Alzheimer’s among African Americans, especially through educating them about “facts of AD (Alzheimer’s disease)”, would then have a “positive impact on decreasing time until diagnosis” and increase the likelihood for more African Americans to pursue specialized neurological care (Chin, Negash, & Hamilton, 2012). Additionally, increased awareness and advocacy could also bring a positive impact on trust between physicians and BAME patients. With a better understanding of treatment options, symptoms, and diagnosis procedures, there will be clearer communication within patient-physician relationships.
The second measure that must be implemented is primary physician training to reduce bias. Numerous studies have identified the need for “interventions targeting implicit attitudes among health care professionals”, as “implicit bias contributes to health disparities for people of color” (Hall et al., 2015). Prior to reaching specialized physicians in neurology, many BAME individuals visit primary physicians. To increase the number of referrals for BAME groups, bias must be reduced at the primary physician level.
With the understanding of the detailed mechanisms behind racial disparities in neurological care, it is possible to propose more effective solutions. The connection between the referral process and lack of advocacy brings new insight to the kinds of measures and programs that must be implemented to reduce racial disparities. In the long run, addressing racial disparities will take detailed and in-depth research regarding programs and policies that target specific areas.
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Naryeong Kim is a sophomore at Stanford University studying bioengineering and political science. She is fascinated by the intersections between law and neuroscience. In the future, she hopes to provide innovative and equitable treatments for mental health illnesses. She is also passionate about developing legal systems that better address neurological implications of trauma. For fun, she enjoys oil painting, fencing, and reading!