This clinical brief is based on the Virtual Neurology Conference on September 22, 2022: "Best Practices in Telemedicine in Neurology" led by Ray Dorsey, MD and "Considering Patient Diversity in the Neurology Clinic" led by Mitzi Joi Williams, MD, FAAN.

Diversity encompasses more than race and ethnicity: It also includes gender, sexual orientation, age, as well as persons living with disabilities. This is a broad topic, and there are many populations that can be affected by health inequalities. This article will focus on outcomes in neurology that affect patients from ethnic minority groups.

The Institute of Medicine has defined a healthcare disparity as a difference in healthcare quality not due to differences in healthcare needs or preferences. It can be a result of a range of social factors, such as inequalities in access to quality healthcare professionals (HCP), differences in insurance coverage, and discrimination by HCPs. It is also measured by disease incidence, prevalence, morbidity, mortality, and survival rate relative to the general population.^[1]

Social determinants of health are often discussed in terms of outcomes. Systemic racism and other forms of discrimination negatively affect social determinants of health. Current research on low socioeconomic status negatively affects care in Black and Hispanic patients with multiple sclerosis (MS).^[2-4] A study by Khan et al found that ethnic minorities with MS have higher morbidity and mortality and have lower representation in clinical trials, which, in turn, limits the ability to understand these differences.^[5,6] Systemic biases and racism may limit access to resources.^[2,4,6] If patients do not have transportation to their HCP or access to specialty care, their outcome can be negatively impacted. In addition, a lack of culturally competent care can affect a patient's willingness to engage with the medical system and create mistrust.^[2-4]

Figure 1. Social Determinant Influencing Inequities in MS Care and Outcomes^[4]

Neurodisparities

Neurodisparities are racial health inequities that are specific to neurology. A recent study indicated that Black patients have poorer access to neurologic care and worse outcomes across subspecialties, such as headache, dementia, Parkinson disease, epilepsy, and others. Relative to White patients, these racial health inequities are common among Black patients with already diagnosed neurology conditions, even after adjustment for demographics, insurance, and health status difference. Another study found that Black patients were 30% less likely and Hispanic patients were 40% more likely to see a neurologist in the clinic and more likely to seek emergency care, be hospitalized longer, and face higher hospital expenses.^[2,3]

Although Black patients represent a smaller number of people living with MS, morbidity and mortality are higher at younger ages for these patients.^[5] Age-specific MS mortality patterns showed non-Hispanic Black patients had the highest rate under age 55 years and non-Hispanic White patients had the highest rate after age 55 years. For these 2 groups, MS mortality increased with age in both sexes and peaked at ages 55 to 64 years for Black patients, who may experience more aggressive disease course and are more likely to have transverse myelitis, more frequent relapses, worse post relapse recoveries, faster transition from relapsing-remitting MS to secondary progressive MS, and more severe ambulatory impairment compared with White patients. The variations in disability from non-Hispanic White patients may be result of differences in clinical presentation, genetic underpinnings, and sociocultural factors.^[6] Creating awareness and increasing participation in research studies may help to improve understanding.^[5-7] To address healthcare disparities, HCPs should be aware of barriers for ethnically diverse patients. (See Table 1.) Members of the healthcare team should collaborate to mitigate barriers and/or biases.

Addressing Barriers

Some challenges to caring for diverse populations may include religious beliefs, socioeconomic status, distrust of the medical team or research, community, and poor diversity in clinical trials.^[1-8] For some communities, religious beliefs and perceptions may affect their interactions with the healthcare system. They may be hesitant to take certain treatments that they feel undermine their faith. It is important to engage with patients and address these issues or at least be understanding of them. These may affect their willingness to interact with the medical system, and, as a result, limit their treatment options and outcomes of care. Lastly, identifying and ameliorating barriers should be addressed.^[6,7]

Table 1: Barriers for Black and Hispanic Patients in Health Care and Study Participation^[9-11]

Mitigation Strategies for the Healthcare Team to Address Bias

There are many implicit bias tests and quizzes available that can assess one's belief systems to determine any biases. Implicit bias training from professionals who are experts in the field and have a different ethnic background may bring a different perspective. The 2 types of bias are implicit (unconscious) and explicit (conscious). Members of the healthcare team should address both explicit and implicit bias, embrace structural training, and ameliorate policies that encourage inequitable care.^[2,12] Understanding structural competency means understanding the downstream effects of different policies, whether they are social, political, or economic. In doing so, it may prevent internal and external bias, decrease stigmatization, support culturally competent care, promote evidence-based care, and reduce health disparities.

Examples of how to address these barriers includes locating programs that will increase diversity within the different workforces and ensuring the policies address equitable access to healthcare. Healthcare professionals can increase study participation in clinical trials by researching sponsor disease state focus and the established protocols to enroll appropriate patients. Learning how to make the trials more patient-centric and accessible to a broader group of people will in turn address barriers to care. There are also online resources that provide lists of local trials being conducted where patient advocates are available to discuss their experiences which helps the patient to better understand the process. It is important to educate patients and their care partners about the benefits of clinical research so that the research reflects the populations being served. Another strategy is to create educational materials from minority groups. Healthcare professionals should encourage self-advocacy among patients and their care partners. They should be encouraged to read and to research so they can make shared decisions. This builds patient trust with the treatment plan.^[7]

Members of the interprofessional team can also encourage self-advocacy, which can increase the patient’s involvement in shared decision making. This, in turn, can increase compliance as well as the patient’s confidence in the treatment plan. Another important action item is to partner with the local community and advocacy organizations to raise awareness of important research and resources available to the community. Healthcare professionals should build lasting relationships and be trusted voices within their communities for people living with neurologic conditions. It is extremely important to invest in the diversification of the neurology workforce. This can be accomplished by mentoring diverse students and others to expose them to the field of neurology. Lastly, it is extremely important to raise awareness in the medical community about the importance of diversity and increase education about cultural competency.^[2,7]

Addressing Access to Care

During the start of the COVID-19 pandemic in 2020, access to care was a major barrier for many patients. At the time, telemedicine filled this need by allowing patients to have home video visits with numerous members of the healthcare team in one call. This provided an opportunity to address and identify learning needs and care from other professions, such as psychologists and mental health counselors, social workers, physical therapists, speech therapists, occupational therapists, nurses/nurse practitioners, physician assistants, dieticians, and pharmacists. The team is involved from the beginning and may even include coordinating clinical activities in the palliative phase.^[13]

Figure 2: What Can the Healthcare Team Do to Help Decrease Neurologic Care Disparities?^[2]

Table 2. Mitigation Strategies^[12]

The number of Medicare beneficiaries using telemedicine increased by almost a hundred-fold in a span of 4 weeks from March 2020 to April 2020 at the start of the pandemic. The months spanning from March 2020 to March 2022 saw several major Medicare coverage expansions of telehealth.^[13,14] The widespread adoption of telemedicine occurred due to Medicare temporarily expanding its reimbursement of telemedicine in 3 valuable ways. One, it removed the requirement that telemedicine should be provided in health professional shortage areas, allowing telemedicine to be used to provide care to patients who live in cities. Telemedicine started out as an outreach program for patients living in rural areas; however, over the course of time, the need has shifted. Now, most telemedicine is provided not in rural areas but to patients living in urban areas. The second change was that it covered care provided in the home. A third change is that it covered telemedicine provided by a wide range of HCPs: physicians and nurses, social workers, occupational therapists, physical therapists, and other members of the healthcare team. Clinical telehealth can be used to identify genetic risks with remote genetic testing and counseling, provide an opportunity for diagnosis and treatment, include monitoring and extend it into the nursing home, and offer it during the palliative care phase.^[13]

These changes are temporary and tied to the public health emergency. If the public health emergency resolves, so does the associated telemedicine coverage. Currently, there are dozens of bills in Congress to make telemedicine permanent; however, telemedicine does have some limitations. Many patients prefer to see their HCP in person rather than virtually, and some patients require an in-person evaluation for an accurate diagnosis. The remote exam is feasible in neurology but may not be as thorough as an in-person assessment. There are patients who may have difficulty coming into the clinic, such as patients with limiting physical disabilities (eg, amyotrophic lateral sclerosis or Parkinson disease). Fortunately, about 60% to 80% of medical diagnoses are based on medical history, and the history alone can lead to the final diagnosis in 76% of those cases.^[15] Telemedicine also offers many benefits, such as reduced contagion, expanded care, increased convenience, enhanced comfort, and greater confidentiality.^[13,14] As a nation, we have already moved toward mobile devices for activities such as banking and shopping. Societal trends point us to receiving care in the home with mobile devices. Telemedicine can be a powerful tool by incorporating many different HCPs and spanning the continuum of care.^[13]

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