Proceedings of a Workshop—in Brief

Health Disparities in Central Nervous System Disorders: Access to Care

Proceedings of a Workshop—in Brief

Technological advances in neuroscience have led to tremendous strides in understanding the brain, opening new possibilities for diagnosis and treatment. Unfortunately, not all patients benefit from new or existing therapies, said Yasmin Hurd, the Ward-Coleman Chair of Translational Neuroscience, and the director of the Addiction Institute at the Icahn School of Medicine at Mount Sinai. Gaps persist for minority populations with central nervous system (CNS) disorders, both in access to diagnosis and treatment and in their health outcomes, she said, making it important to address these health disparities, achieve health equity, and create pathways to equality.

To better understand and close those gaps will require including the patient voice and listening to those who have experienced disparities in their care, said Christine Crawford, an adult and child psychiatrist and assistant professor of psychiatry at the Boston University School of Medicine. “People who have lived experience are experts by experience,” and it is important that researchers provide a seat at the table for people with lived experience, she said. “It will be an incredible tool for advocacy to be able to empower a patient population and to make policy changes that are needed. We need their voices at the table to better inform our research and to make it more appropriate and to increase the overall quality of our interventions.”

To further understand the range of health disparities in CNS disorders, the Forum on Neuroscience and Nervous System Disorders at the National Academies of Sciences, Engineering, and Medicine held a virtual workshop¹ on April 18, 2023, centered on disparities in access to care for CNS disorders. This was the second workshop in a series designed to bring together leaders in research, health equity, and patient advocacy to discuss health disparities in CNS disorders; to understand the intersectional impact of race, ethnicity, socioeconomic status, gender identity, sexual orientation, and migration status on risk; to discuss barriers to equity and access; and to explore opportunities to engage people with lived experience and community-based organizations as partners in reducing disparities in access to care.

Hurd and John Krystal, the Robert L. McNeil, Jr. Professor of Translational Research, chair of the Department of Psychiatry at the Yale University, and chief of psychiatry and behavioral health at Yale New Haven Hospital, asked

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workshop participants to highlight disparities and how social and structural determinants contribute to those inequalities. The participants also discussed opportunities to better include underserved populations in CNS research and treatment developments (see Box 1). “Incorporating the experiences of those who are living with those conditions each and every day into the work that we’re doing can essentially help increase overall patient engagement and overall well-being,” Crawford said.

DISPARITIES IN ACCESS TO CARE

Nicole Rosendale, an assistant professor of neurology in the Neurohospitalist Division at University of California San Francisco, moderated a panel focused on the social and structural determinants that contribute to disparities in the diagnosis and care of CNS disorders. The panelists also discussed which of those determinants—such as stigma—might be common across a variety of environments.

Incorporating Lived Experiences in Research and Clinical Care to Reduce Bias and Increase Equity

“Incorporating patient experiences into policies and interventions can help to better meet the needs of patients who are under-resourced and allow for tailored interventions,” Crawford said, explaining that personalized interventions could better meet the needs of specific populations and help to achieve health equity.

A child and adolescent psychiatrist, Crawford reflected on the “tremendous amount of stress” that many people in the United States endured during the COVID-19 pandemic and the way that children processed that stress. Many children struggled to find tools and strategies to get through the difficult time in their lives, she said, as did many adults.

Listening to patient experiences can help clinicians identify tools to help their patients cope with their stress, Crawford said. However, researchers will remain unaware of the tools needed or areas of potential opportunity unless they pay attention to their patients. Being open to the patient voice, Crawford continued, can also help clinicians address their own bias, particularly related to structural racism. When clinicians see disparities in health outcomes, she said, some may be due to “certain policies and practices that have been put in place for quite some time that have been impacting more marginalized communities.”

However, clinicians might not recognize the role of their own implicit bias and the way that bias affects how clinicians interact with their patients and perpetuates structural racism. Society may fuel implicit bias through popular media and culture in a way that perpetuates an inequitable system and structural racism. Implicit bias might affect not only how a clinician meets with a patient, she said, but how that patient engages with the clinician—“the way in which they talk about their symptoms, the way in which their symptoms present, and how it is we interpret their symptoms.”

Not listening not only could perpetuate structural racism, Crawford said, but could perpetuate the stigma surrounding care. She cited data from the National Center for Health Statistics 2019 National Health Interview Survey showing that Hispanic and Black patients between the ages of 5 and 17 used mental health services at much lower rates than their White counterparts, findings that are also reflected in adult populations.²

For Black and Hispanic communities, Crawford said, the disparities extend beyond health care to education and income. Higher educational attainment is linked to better health outcomes, she said, but Black students suffer from ongoing inequities in the educational system. Hispanic and Black households also have lower household incomes. “These are ongoing stressors that our patients are experiencing that we know are having an impact on their health,” she said. Those ongoing stressors are connected to changes in neurodevelopment, which could in turn lead to social, emotional, and cognitive challenges and to early mortality.

The first step to addressing these stressors is listening, Crawford said. “If we don’t listen, then we won’t be able to have the opportunity to address the stigma, to address the shame, the prejudice, the worry about discrimination, the worry about being viewed differently when it comes to entering the mental health or any other health care–related system to get the help that they need.”

Understanding Barriers to Care in Forcibly Displaced Populations

People who have been forcibly displaced experience unique disparities in the care and diagnosis of CNS disorders, said Altaf Saadi, a general neurologist and neurohospitalist at Massachusetts General Hospital (MGH), an assistant professor of neurology at Harvard Medical School, and the associate director of the MGH Asylum Clinic. People who have been forcibly displaced can be refugees or asylum seekers, she noted, but those are both legal definitions that define subgroups of a larger population. This means that people who have been forcibly displaced can have “incredible trauma exposure, but not have this label, not because of anything to do with their experience or how that affects their health, but as a result of the legal structures we have,” she said.

Traumas that people in forcibly displaced populations may experience do not immediately begin or end when people leave their country of origin and arrive at their destination. “We can’t reduce immigrants’ journeys to pre- and -post migration,” Saadi said. “There is also the journey itself that can confer harm, which may include immigration detention that can act as a catalyst of worsening health.” Upon arriving at the country of migration some in forcibly displaced populations run the risk of deportation (Saadi et al., 2020). The communities they settle in can also have such factors as racism, housing insecurity, language barriers, and over-policing, which can contribute additional traumatic experiences (Saadi et al., 2020).

The trauma experienced by forcibly displaced populations can be particularly difficult for those experiencing CNS disorders. Saadi explained that neurological and psychiatric diseases are “mutually exacerbating.” People in forcibly displaced populations have higher rates of mental illness, and when people with mental illness experience head trauma, for example, they are more likely to have persistent symptoms. Forcibly displaced people are also often exposed to violence, which can lead to neuropsychiatric illness and increase someone’s vulnerability to further violence. This increases the likelihood of experiencing a bidirectional relationship between mental illness and neurological harm, Saadi said.

When people who have been forcibly displaced need care, they face individual internal barriers and structural barriers, she said. For example, stigma around mental illness can form a significant internal barrier. Forcibly displaced populations have higher rates of psychiatric illness, but may fear shame and stigma when sharing their experiences of trauma and abuse.

Mistrust and perceived discrimination, Saadi said, are additional internal barriers to diagnosis and treatment for people in displaced populations, who might also be fearful of discrimination based on whether they have

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the correct immigration papers. It is easy to conflate immigration law with health care systems, she said, and people might worry that information they give to health care providers might end up in the hands of immigration enforcement. “People may be worried about medical bills,” she explained, “and maybe if they can’t pay them that that’s going to lead to arrest or detention or deportation.”

There are also structural barriers to forcibly displaced people seeking care, Saadi said. The stress of resettlement is its own barrier. “People often don’t prioritize their health care,” she said. “They’re focusing instead on their immigration case, on securing shelter, food, employment, support for their families.” Services are often limited, and providers may not have experience dealing with populations exposed to significant levels of trauma. There may also be a language barrier, Saadi said, and only a minority of clinicians regularly use professional interpreters, despite federal legislation mandating patients be provided medical interpreters. Thus, members of forcibly displaced populations may be unable to communicate with medical providers.

Finally, internal barriers can be compounded with structural barriers. For example, fear of deportation is an individual barrier, but it is embedded within laws and law enforcement actions, Saadi said. Individual traumatic experiences may go unreported due to structural issues such as language barriers, which can contribute to ongoing gaps in diagnosis and care (Saadi et al., 2020).

Understanding Barriers to Care Access in LGBTQIA+ Populations

Currently around 3 million Americans over the age of 50 identify as LGBTQIA+, said Jason Flatt, an assistant professor in the Department of Social and Behavioral Health at the University of Nevada, Las Vegas, School of Public Health. That population will likely more than double by 2040.

People who identify as LGBTQIA+, Flatt said, include those who identify as asexual, bisexual, gay, lesbian, or queer as well as individuals who identify as nonbinary or transgender or otherwise do not experience their gender as aligning with the sex they were assigned at birth. LGBTQIA+ identities also include individuals who are intersex and are born with differences in their sexual development.

Of the older adults in the United States who identify as LGTBQIA+, around 20 percent are racial or ethnic minorities, and one-third live in poverty. “We are seeing a growing number of our aging population who are identifying as [LGBTQIA+],” Flatt said. LGBTQIA+ populations also often have limited access to the supports that many cisgender heterosexual people rely on, such as marriage, living with a partner, or having support as a caregiver. This lack of support can present a barrier to care access, he said.

This community also has barriers to other types of health care, Flatt said, particularly gender-affirming care. “We know both historically and currently that the identities of LGBTQIA+ individuals have been considered a mental health disorder,” he said. Transgender people require a diagnosis of gender dysphoria to access gender-affirming health care, and that type of care is under attack in many areas.

Very little CNS disorder research has been done in LGBTQIA+ individuals, Flatt said, and even less has been done on older populations in this community. A review of 348 studies by Rosendale found that there were only five neurological studies on LGBTQIA+ people over 60 (Rosendale et al., 2021). According to the review, most studies looking at LGBTQIA+ populations and their CNS health focused on cisgender adults and gay and/or bisexual men, and the majority focused on HIV status.

Flatt said that in his own research, “we are seeing higher rates of memory problems for the sexual and gender minority communities” compared to non-LGBTQIA+ individuals and less than half of those with memory problems have access to care (Flatt et al., 2021). LGBTQIA+ individuals are also more likely to say they experience discrimination in medical settings, he added. More research and data on sexual orientations and gender identities could help address these disparities and promote resilience, he said, and “we need to support [LGBTQIA+] caregivers, families, and make sure care is inclusive for everyone, and support others to move into this work.”

Examining Disparities in Care in Children, Adolescents, and Young Adults

The disparities in care that affect under-resourced populations begin even before birth, said Kiara Álvarez, an assistant professor in the Department of Health, Behavior and Society at Johns Hopkins Bloomberg School of Public Health. She explained that antenatal and prenatal exposure can impact children’s development. “We see striking disparities, for example, in access to care for Black and Indigenous women during pregnancy.” These disparities are affected by the socio-ecological system into which children are born. All children live in the context of their families, schools, neighborhoods, and broader societies. “Racism and poverty [are] fundamental and enduring causes of disparities that impact our youth, prior to birth and beyond,” Álvarez said.

These disparities affect women during pregnancy as well as caregivers and children, she said. This socio-ecological system contributes to inequalities, she added, so interventions need to address the importance of a multigenerational perspective, providing care access for not just children, but also the families and communities in which they are embedded. This is especially important for children with chronic neurological disorders such as epilepsy, she said, where race, socioeconomic conditions, and the systems the children are embedded in might make it difficult to access specialty care and services.

Interventions at a systems level come with challenges and opportunities, Álvarez said. Children access services via educational settings, and also via the legal system or child protection system, she said—“places where children may be routed into the system or actually be prevented from accessing the care that they need.”

As an example, Álvarez spoke about lead testing and schools. Some states, such as Maryland,³ require lead testing for children to be enrolled in the public school system. It is an opportunity to catch children’s exposure early and make sure those children can access care. But the same schools that provide opportunities for lead testing can themselves produce disparities, she said, as the schools themselves may have inequitable infrastructure practices. In 2017, only 43 percent of U.S. school districts had their own water tested for lead, and 37 percent of those found elevated levels, so some schools may be exposing their students to lead every day⁴.

“We have to be thinking about these different levels of care for CNS disorders,” Álvarez said. Universal interventions, such as testing for and removing lead from schools, as well as the interventions mentioned by Micaela Martinez, Director of Environmental Health at WE ACT for Environmental Justice, in the first workshop could help prevent adverse childhood experiences and environmental exposures. It is “an opportunity to engage in prevention for all youth,” she said.

Álvarez added that addressing the barriers to diagnosis and care for CNS disorders in children, adolescents, and young adults at the systemic level is a challenge, as it involves addressing systemic inequalities. As an example, she noted that under the expanded Child Tax Credit,⁵ economic outcomes improved for children living in poverty; however, the program has since ended. “So,” she said, “we haven’t had investments really in maternal and child health, for example, at the level that we would need to really be able to see any kind of reduction in disparities, and a lot of programs are happening at too small a scale to be able to see that impact that we would want to see.”

Health Disparities in Clinical Trials

Communities that face inequities in access to diagnoses and care for CNS disorders are also underrepresented in clinical research, said Quita Highsmith, the vice president and chief diversity officer at Genentech. As an example, when her group looked at genome-wide sequencing data in 2017, they saw that 88 percent of the material was from people of European ancestry. And by 2022, she said, the data is even more White, with 91 percent of the available genomic material being of European ancestry (Mills and Rahal, 2020).

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Similar to the LGBTQIA+ population, Black and Hispanic/Latinx populations are underrepresented in clinical research, with Hispanics being 1 percent and African Americans being only 5 percent (Coakley et al., 2012), Highsmith said. This underrepresentation could present even larger problems as physicians rely more on models based on large-scale population data. These models might be able to show differences between Black and White groups in terms of prostate cancers but might also yield misleading results if Black people remain missing from the dataset. “It has the opportunity to yield improved care,” she said, “but if these tools do not have more diversity in the data, then we could actually be making things worse.”

People in underrepresented groups want to participate in clinical research, Highsmith said, but there are several barriers that produce inequities in participation. First, she said, patients need to be asked in the first place, and often members of populations that are underrepresented in clinical research have never been asked.

Highsmith reiterated that underrepresented populations may have significant medical distrust. “We have to stop pretending that there’s real objectivity in health care,” she said. She said that patients of color are often not believed, and their concerns are not taken seriously. “The medical community has to really listen and not assume they know what’s better than what the patient is telling them.”

“We have to be trustworthy and not put the blame on patients of color for not wanting to participate,” Highsmith continued. “We’ve got to stop blaming marginalized communities, saying they do not want to participate in the research. No. It’s not that they don’t want to participate in the research; we haven’t proven to be trustworthy, and we haven’t explained what we are going to do with your data.”

One of the factors that can increase trustworthiness and participation, Highsmith said, is having physicians and scientists that are Black or Hispanic. Unfortunately, she said, “the data show that the needle actually hasn’t moved for Black physicians for over 120 years.” It is an opportunity to increase diversity at all levels, from patient to scientist, Highsmith said. One approach would involve increasing emphasis on pathways for first-generation college students to give them access to the same career opportunities and pathways that others get, including being scientists and physicians. “It is more than increasing funding,” she said. “It is all of us in this audience. What are we doing to engage, to ensure that we are diversifying medicine and the science?”

Saadi said that not asking people about their migration status could help engage more diverse populations in clinical research. People in forcibly displaced population may have concerns about how their data might be used. During the pandemic, for example, there were cases of public health agencies that shared information about people who tested positive for COVID with law enforcement, including their names and addresses.⁶ So, she said, researchers should consider carefully what to do with the information they collect and how they might protect patient privacy to mitigate existing disparities.

Flatt said that there is also a gap in data on LGBTQIA+ communities, as most research in the field has not even asked about people’s identities. Increasing representation, he said, involves “asking appropriate questions, hiring people from our community so that they can represent our groups,” and can help to make advances to address their concerns.

Highsmith said that building trust also requires educating people who might participate in research about how the data will be used. People who might participate in medical research should know, for instance, that one family member can participate in the research without the knowledge generated being used against other family members. Media reports have emphasized how genetic ancestry testing has been used in criminal investigations, she noted. “We’ve got to explain that in health care and clinical research that is not going to happen,” she said. “That the data is protected and private.”

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Highsmith echoed Flatt’s sentiments about the importance of engaging with communities which can help to build trust. “We have to be trustworthy, and in order to be trustworthy, you’ve got to go out into the community where people are,” she said. “They’re not going to come to us.” She emphasized what she called the “four Bs.” “You need to be in the bodega, the barbershop, the bishop, and the beauty salon. That’s where the conversation is happening. That’s where trust is being built.”

Moreover, Álvarez said, research questions for children, adolescents and young adults should be developmentally appropriate. Unfortunately, this is uncommon, she said, and younger children might not be surveyed at all. Álvarez added that young people may not give the same perspectives on something as their parents. “Parents may not be fully aware of the specific challenges that youth are facing,” she explained. Thus, researchers should seek out participants of different ages and developmental stages, rather than relying solely on adult populations.

Álvarez said that trust can be built by simply respecting the youth’s perspectives rather than diminishing their perspectives or putting them in the context of an adult framework, which reduces their ability to advance their ideas. This often-automatic reaction from adults can make it hard to advance and incorporate the lived experiences and ideas of young patients.

Integrating Health Equity into Academic and Medical Training and Practice

Scientists and clinicians often receive little to no training on diversity and inclusion, despite data indicating the critical need for this training, Highsmith said. Flatt added that standard training for clinicians and researchers training does not include enough clinical encounters or case studies with LGBTIQIA+ patients.

The lack of training contributes to systemic racism and discrimination, Highsmith added, and “has really prevented communities, Black, Indigenous, people of color, [and] LGBTQIA+ [populations] from getting the type of access to care that they need.” As an example, she cited a study that examined pain management in children brought to emergency departments for appendicitis. Based on this research, Black patients were less likely to receive any pain medication for moderate pain and less likely to receive opioids for severe pain than White patients when presenting with acute appendicitis (Goyal et al., 2015).

Training people out of that discrimination, Flatt said, is about “training people around their own implicit biases.” Cultivating an openness to learning and cultural humility could help build trust between clinicians and researchers and their patients and study participants.

Too often, training in health equity is not consistently incorporated into medical and research training, Saadi said. “[Clinical and research trainees] will have all these lectures about [a range of] topics, and then you’ll have this one add-on lecture at the end that’s about health equity,” she said. Similarly, she added, there are often separate funding mechanisms for research projects that address health equity. Incorporating health equity “should be thought about from the outset” and incorporated into all medical education and research training.

Álvarez added that there are often barriers to funding for the many students interested in health equity projects. “It can be a really difficult and lonely road for people, and then you end up getting pushed to other areas,” she said.

Saadi also commented that the responsibility of addressing equity often falls on those who are members of the underrepresented communities. “But we have to really reframe it as being everyone’s issues to deal with,” she said. “It should be on everyone’s plate.”

Finally, Álvarez said that those who are active in equity research are often asked to go back to the beginning and explain why people from historically underrepresented backgrounds get pushed out of medical and research institutions. “There’s tons of documentation everywhere from the academic literature to social media posts to op-eds,” she said. The answer remains the same, she

said: To make change, racism and discrimination within academic training pipelines must be addressed.

Michael Chiang, the director of the National Eye Institute (NEI) at the National Institutes of Health (NIH), described some of the efforts under way at NEI dedicated to increasing the diversity of the vision workforce including identifying early-career individuals to help build the pipeline. In addition to early career awards, NEI has a video contest for high school students, where winners receive prizes and meet scientists, including the NIH director. NEI recently hosted a joint workshop with the National Institute on Minority Health and Health Disparities to better understand root causes of health disparities and discuss potential future collaborative initiatives, Chiang added. “I really hope that this interdisciplinary view toward the problem is going to be what helps us getting people together from these different perspectives come up with the best solutions,” he said.

EXPLORING OPPORTUNITIES TO INCREASE ACCESS TO CARE

While the first session emphasized the barriers to access for diagnosis and care of CNS disorders, the second panel, moderated by Carl Hill, the chief diversity, equity, and inclusion officer for the Alzheimer’s Association, focused on opportunities to increase equity through the research and clinical space. The panelists considered case studies and models of research approaches that will enable better inclusion of underrepresented and excluded populations and, ultimately, result in the provision of better quality care to these populations.

Incorporating Cultural Considerations to Increase Care Access

Ayana Jordan, the Barbara Wilson Associate Professor in the Department of Psychiatry, an addiction psychiatrist and an associate professor in the Department of Population Health at the New York University (NYU) Grossman School of Medicine, and Pillar Co-Lead for Community Engagement at NYU Langone’s Institute for Excellence in Health Equity, emphasized how public policies, inequities, and othering (viewing or treating a person or group as intrinsically different or alien to oneself) of people with CNS disorders limit their access to care. Her research asks, “How can we really be advocates and be part of the conversation, to make sure that people are able to really take care of themselves and not make it harder?”

In her laboratory, Jordan said, she examines the culture surrounding research and treatment for substance use disorders and identifies ways in which the culture might perpetuate inequalities. For example, “White discomfort or White fragility really limits discussions about how research or clinical care can be provided in the ways that value other conditions or other types of views,” she said. Additionally, current research and interventions often focus solely on individuals without considering the ways the community might be involved in care.

Decentering Whiteness (the idea that cultures, customs, and beliefs associated with White people are the standard to which other groups should be compared) to include more diverse cultural perspectives and considering how structural racism upholds harmful narratives can assist in mitigating current practices that may inadvertently stifle access to care. When Whiteness is decentered, Jordan said, researchers and clinicians can see participants and patients “as wonders to behold as opposed to problems to be solved.” Encouraging cultural diversity in her lab, she said, involves “looking at community-informed expertise, realizing that voices from historically excluded communities must be included in narrative solutions.” Jordan’s lab also provides leadership development for existing community leaders, who have community-informed expertise but may have been historically excluded from research, so that they can better engage with academic and scientific communities.

Jordan’s community-based participatory research collaborative does not take on a research question without representation from every group involved. “So, for us, it’s Black and Latinx people who use drugs, [including those] with substance use disorders, community advocates, clinicians, and research scientists, all of them together,” she explained. Her laboratory group quickly realized they needed to partner with faith institutions to decrease stigma around care for substance use and to get the support of the community (Jordan et al., 2020). Working in this faith-supported environment,

Jordan and her colleagues educate patients on the social determinants of health and their impact on substance use for 6 months (Bellamy et al., 2021). If patients want to start treatment, she said, staff in her lab will see them in the church setting.

In addition, patients can more easily access Black and Latinx psychiatrists through telehealth. “They’re actually able to be paired with people who look like them, with people who speak their same language, and they’re actually able to receive treatment and have inductions in a safe space,” she said. The Imani Breakthrough project, a collaborative culturally-centered and community-driven faith-based opioid recovery initiative, has served more than 800 people to date.⁷ “We know that if you build it, they will come, in a way that’s culturally informed, and we think that this is going to work better than referring people into the community for addiction treatment in clinics,” she said.

Incorporating Advances in Technology to Increase Health Equity

Technology has transformed many aspects of clinical care, Chiang said. For instance, advances in technology have allowed many diagnoses and treatments to go from qualitative to quantitative. He described how when he was a medical resident, he had to use a special contact lens to examine all the nuances of the optic nerve and the retina structure, and then would draw it on pieces of paper. Now there are tools like optical coherence tomography (which takes cross-sectional images of the retina), photography, and other imaging technologies which can be utilized in emerging technologies like telehealth and artificial intelligence (AI).

With large enough datasets, AI can increase diagnostic accuracy. For the eye there are many images of the retina that can be coupled with clinical data, Chiang said. “The first FDA-cleared autonomous artificial intelligence diagnostic system in any field of medicine was for diabetic retinopathy,” he noted.

Advances in technology could also help improve the cost of care, Chiang explained. Studies are finding that retinal images might help in diagnosis of CNS disorders such as Alzheimer’s disease or stroke. If retinal imaging could assist with diagnosis or prognosis, he explained, the patient could avoid the cost of more expensive magnetic resonance imaging.

Chiang mentioned an NIH-funded Bridge2AI project, with the goal of using them as the basis of diagnostic algorithms.⁸ He pointed out the risk of bias in AI which can exacerbate health disparities but “having large datasets that really represent the whole population can not only help us prevent that, but also find ways to detect and minimize bias.” Big data can offer challenges for medical privacy, he added. “The important thing is that we’ve got to think of technology as a mechanism to narrow the gaps between populations, not to further widen them,” he said.

Telehealth provides another opportunity to reduce barriers to mental health care caused by stigma, said David Mou, the chief executive officer of Cerebral Health. People of certain ethnic backgrounds may have to address cultures that are against seeking mental health care, he said. As someone who is Chinese American, Mou said that he is often approached by other Chinese Americans who say that they want therapy but “they don’t want the clinician to take notes in the off chance that this gets found out and their parents or their family knows that they’re seeking care for mental health.”

Cerebral Health is a telehealth platform that provides both talk therapy and medication management. Telehealth offers several ways to improve access for historically marginalized groups. Care often comes within 5 days, and 50 percent of Cerebral’s clinicians identify as non-White. If someone comes in with a request to see a female therapist who is African American and experienced in trauma-informed care, it is important to match the patient with someone from that background, Mou explains, because not only is it important to the patient but it can facilitate a stronger bond. Cerebral’s clinicians are based in all 50 states, which can be crucial for reaching rural populations. “We understand that

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stigma is a problem for multiple dimensions, whether it’s [based on an individual’s] socioeconomic status, or ethnic or cultural background, we shouldn’t expect our patients to overcome that stigma in order to get care,” Mou said. “They deserve care where they are, and we have to meet them where they are.”

During the discussion, Mou said it is especially important to track the outcomes that patients experience in their telehealth. “There’s a lot of nuances here that we’re still just beginning to unpack,” he added. In some cases, the therapist the patient seeks might not be a good fit.

When used correctly, algorithms can also help increase equity and democratize access to care. One machine learning tool Mou’s company is using examines text messages that people send to the company to determine who might be at risk of self-harm. “We can detect now with 97 percent accuracy which patients have suicidal ideation and then we can proactively call those patients within minutes,” he said. The patients that the company reaches out to have racial and ethnic backgrounds that are much more diverse and reflective of the population than data from national hotlines such as 911 or 988, which are called most often by people who are White.

Understanding the Role of Insurers in Health Equity

Public and private insurers have many levers they can use to improve health equity, said Hoangmai (Mai) Pham, who leads the Institute for Exceptional Care. They can influence clinicians through their role in paying for medical services, for instance, or take advantage of their size to serve as thought leaders.

Before insurers act, Pham said, they need to unpack their implicit biases. In addition to collecting race and ethnicity data on CNS disorders, for instance, they could also collect data on how patients in different populations experience their care. “It is not about being scientific and meeting that standard,” she said. “It is about having a closer view and a more on-the-ground view of what happens with the dollars that an insurer spends.” Insurers could then use their influence to amplify stories of care to larger audiences to influence policy.

Other approaches that insurers could take, Pham said, include improving the data they have and incorporating new tools, such as AI and machine learning. Insurers could also control how they allocate financing and payment, using that lever to address historically under-resourced populations. For example, in Medicare, 80 percent of Black Medicare beneficiaries receive primary care from only 20 percent of the primary care providers in the country (Bach et al., 2004). This means that those physicians have lower revenues and less access to resources to serve their communities. “That is where payers can really play a role, because if you are directing financing and payment, it is within your power to think about how to reallocate some of that financing and payment,” she said.

Doing all of this, she continued, will require authentic engagement. For example, by listening and bringing patients and caregivers with CNS disorders together with health care decision makers, insurers could take advantages of “the genius of lived experience.”

Pham described how one coalition in Long Island, New York, is addressing issues that first responders sometimes experience when engaging with people with intellectual and/or developmental disabilities (IDD). Because these people often have communication challenges that are exacerbated by stress, the coalition is building a digital tool that will provide first responders with information about what the patient is like at baseline, compared to when they are in stressful situations such as an emergency room. The interactions that people with IDD have with first responders can be dangerous, as the intersection of race and gender compound the risk of a negative interaction in a high-stress environment. The tool will provide first responders with options to create a less stressful encounter, such as using music to calm down the patient.

An important part of this effort, Pham said, is the use of universal design—making a product that is accessible to people regardless of age, ability, or any other factor. “If you design a system for groups with the most significant need, you will end up with a better system for everyone,” she said. In developing the tool, Pham said, her team

asks people with IDD and their family members what they would add to the design. Then, Pham and her team ask clinicians and payers how they can support these priority goals without taking anything away.

During the process, people are enlightened as different groups see new opportunities for intervention. “Suddenly,” she said, “we have the payers saying the clinicians want to get trained in communication strategies. We’ll pay for that.” The process shows the value of bringing together members of all concerned groups. “It’s very hard to not become invested in someone’s well-being when you are breaking bread with them, so to speak, over this health care table,” she said.

Engaging Community Members to Maximize Impacts

“Given how pervasive the origins of the disparities are in societal structures and not having a lot of power over those institutions,” Hill asked, how might people trying to reduce health disparities maximize their opportunities? Jordan responded that collaboration with like-minded people could make a difference. “You don’t have to save the world,” she said, “but you have to really be myopically focused on one project, starting in your own neighborhood.” Within that neighborhood, she continued, “the magic happens when we’ve put great minds together that include all sectors of the community to tackle some of these issues.”

Pham also spoke of the importance of bringing in community members to create change. “All of our projects are heavily populated with community members,” she said. “They are core team members. They are advisers.” A separate core of advocates are professionals in health care fields, from clinicians to insurance executives. “That group is meant to become an army of insurgents, of change agents from within health care, who will tackle sector-specific goals for action and change within their communities . . . [and] sectors,” she said.

Chiang said that meaningful progress should not come only from the largest and most endowed institutions because their patients may not be representative of the entire population. More research in collaboration with community-based centers, empowering people in the real world to join with researchers and clinicians, could help encourage change and fill gaps in data.

Mou emphasized trust. People are often very willing to give their data to Google, Facebook, and Amazon, he said, simply to make their lives convenient. Therefore, the limitation is not the data, he said, “it’s just building that trust and then gathering that data and then analyzing the data, the same as the big tech companies have.”

Understanding Barriers and Opportunities in Health Equity

When researchers and clinicians talk about health disparities, Hurd said, it can be easy to think that only small numbers of people are underserved, but in reality, the numbers are vast. Messages from the participants on listening, trust building, advocacy, developing culturally informed interventions, cultivating humility, using technological advances wisely, and meeting people on their own ground could, Hurd said, have a large impact.

Collaboration, Jordan added, is especially important to pursue lasting change. Jordan quoted an African proverb that she uses in her own practice: “‘If you want to go fast, go alone. If you want to go far, go together.’”

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DISCLAIMER This Proceedings of a Workshop—in Brief has been prepared by Bethany Brookshire, Maya Thirkill, Eva Childers, and Sheena M. Posey Norris as a factual summary of what occurred at the meeting. The statements made are those of the rapporteurs or individual workshop participants and do not necessarily represent the views of all workshop participants; the planning committee; or the National Academies of Sciences, Engineering, and Medicine.

*The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop—in Brief rests with the institution. Committee Members: John Krystal (co-chair), Yale University; Yasmin Hurd (co-chair), Icahn School of Medicine at Mount Sinai; Lilyana Amezcua, University of Southern California; Richard Benson, National Institute of Neurological Disorders and Stroke; Christina Borba, National Institute of Mental Health; Katja Brose, Chan Zuckerberg Initiative; Daniel Hackman, University of Southern California; Quita Highsmith, Genentech; Carl Hill, Alzheimer’s Association; Jennifer Manly, Columbia University; Spero Manson, Colorado School of Public Health; Nicole Rosendale, University of California, San Francisco.

REVIEWERS To ensure that it meets institutional standards for quality and objectivity, this Proceedings of a Workshop—in Brief was reviewed by Nicole Rosendale, University of California, San Francisco and Carl Hill, Alzheimer’s Association. Leslie Sim, National Academies of Sciences, Medicine, and Engineering, served as the review coordinator.

STAFF (Forum on Neuroscience and Nervous Systems Disorders): Sheena M. Posey Norris, Director; Eva Childers, Associate Program Officer; Maya Thirkill, Associate Program Officer (starting May 2023); Eden Neleman, Senior Program Assistant (until August 2023).

SPONSORS This workshop was supported by contracts between the National Academy of Sciences and Acadia Pharmaceuticals; Alzheimer’s Association; American Brain Coalition; American Neurological Association; Boehringer Ingelheim; California Institute for Regenerative Medicine; Cerevel Therapeutics; Cohen Veterans Bioscience; Department of Health and Human Services’ Food and Drug Administration (R13FD005362) and National Institutes of Health (NIH) (75N98019F00769 [under Master Base HHSN263201800029I]) through the National Center for Complementary and Integrative Health, National Eye Institute, National Institute of Environmental Health Sciences, National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, National Institute on Aging, National Institute on Alcohol Abuse and Alcoholism, National Institute on Drug Abuse, NIH Blueprint for Neuroscience Research, and NIH BRAIN Initiative; Department of Veterans Affairs (36C24E20C0009); Eisai Inc.; Foundation for the National Institutes of Health; Gatsby Charitable Foundation; Harmony Biosciences; Janssen Research & Development, LLC; Karuna Therapeutics; Lundbeck Research USA; The Michael J. Fox Foundation for Parkinson’s Research; National Multiple Sclerosis Society; National Science Foundation (DBI-1839674); One Mind; Paul G. Allen Frontiers Group; Sanofi; Simons Foundation Autism Research Initiative; Takeda; and Wellcome Trust. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.

For additional information regarding the workshop, visit https://www.nationalacademies.org/event/04-18-2023/addressing-health-disparities-in-central-nervous-system-disorders-virtual-workshop-2.

SUGGESTED CITATION National Academies of Sciences, Engineering, and Medicine. 2023. Health disparities in central nervous system disorders: Access to care: Proceedings of a workshop—in brief. Washington, DC: The National Academies Press. https://doi.org/10.17226/27187.

Health and Medicine Division Copyright 2023 by the National Academy of Sciences. All rights reserved.