|Proceedings of a Workshop—in Brief|
Health Disparities in Central Nervous System Disorders: Driving Transformative Change
Proceedings of a Workshop—in Brief
In the United States, not everyone has the same access to high-quality health care, said Christina Borba, the director of the Office for Disparities Research and Workforce Diversity at the National Institute of Mental Health (NIMH). Many underserved communities—including rural and low-income populations and racial and ethnic minorities—have difficulties accessing services for diagnoses and care. While there are many interventions and evidence-based treatments available for central nervous system (CNS) disorders, disparities in who receives those treatments persist. Part of the issue, Borba said, is the existence of gaps in knowledge about the challenges that arise in working with under-resourced communities. Those gaps in knowledge can contribute to problems with “the translation of interventions back to the communities that we all wish to serve better,” she said.
To identify collaborative opportunities to produce change and to highlight innovative solutions to reduce disparities in diagnosis and treatment of CNS disorders, the Forum on Neuroscience and Nervous System Disorders of the National Academies of Sciences, Engineering, and Medicine held a virtual workshop1 on April 25, 2023. This was the third workshop in a series designed to bring together leaders in academia, industry, government, and patient advocacy to discuss health disparities in CNS disorders; to understand the intersectional impact of race, tribal identity, socioeconomic status, and gender identity; to discuss barriers to equity and access; and to explore opportunities for multidisciplinary collaborations to reach, partner with, and empower members of underserved communities, with the goal of promoting equity and equality in clinical care.
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, and John Krystal, the Robert L. McNeil, Jr. Professor of Translational Research, chair of the Department of Psychiatry at Yale University, and chief of psychiatry and behavioral health at Yale New Haven Hospital, asked workshop participants to explore “the role of different leaders and partners to move the field forward in an ethical manner.” The end goal, Hurd said, was “to increase the diversity of the neuroscience workforce, advance community partnerships, and facilitate multidisciplinary collaborations to ultimately drive transformative and sustainable changes in research and clinical care.”
1 To learn more about the workshop, see here: https://www.nationalacademies.org/event/04-25-2023/addressing-health-disparities-in-central-nervous-system-disorders-virtual-workshop-3 (accessed May 24, 2023).
Throughout the workshop series, it became clear that early community collaboration is key, said Richard Benson, the director of the Office of Global Health and Health Disparities in the National Institute of Neurological Disorders and Stroke Division of Clinical Research. Now it is time, he continued, to discuss more ideas of “how to move these ideas into action.” See Box 1 for highlights from the two panel discussions.
INCORPORATING COMMUNITY PARTNERSHIP INTO ALL STAGES OF RESEARCH
Achieving true equity and equality will take a partnership approach to research, said Dr. Alvin Hathaway, the chief executive officer of the African Ancestry Neuroscience Research Initiative (AANRI). He has adopted the definition of community-based participatory research from the Detroit Urban Research Center, which defines it as “a partnership approach to research that
equitably involves community members, organizational representatives, and academic researchers in all aspects of the research process,” emphasizing equity and equality.
Right now, Hathaway said, recruiting participants whom the research is in theory supposed to benefit is “a check-the-box requirement.” He pointed out that research fields are highly reliant on professionalization, with scientific credentials, affiliations, research papers, and more required to get funding for more research. They can often overlook the community—which is not always professionalized—when applying for funding for their work. Because the participants are not brought into the process from the beginning, when researchers and clinicians are writing grants, he said, the researchers and clinicians end up with the lion’s share of funding. “In many instances the community-based participants are relegated to gift cards and/or free meals.”
True and effective community participation in research, Hathaway said, means that researchers need to understand the four R’s of community engagement: recognition, respect, relationship, and resiliency (Ghuman et al., 2002). According to Hathaway, recognition is achieved by ensuring that community members are “seen, felt, and heard.” Respect addresses the issue of professionalization by recognizing community members as experts in their own experience. Research and clinical institutions can build relationships with community members over time, recognizing how much they add to the value of the research. Finally, resilience refers to the fact that community members have “overcome situations and experiences that for some have been barriers to being fully engaged with other stakeholders.”
With the founding of AANRI,2 Hathaway put community-based research models into practice with four pillars—community engagement, African ancestry, brain science, and science communication and training. “We sit at the table as equals,” he said. To Hathaway, this meant participating in funding efforts for the project and building a partnership with Morgan State University, a historically Black university in Baltimore, Maryland. The partnership helped to develop a neuroscience research program at the university as well as an internship
program to help Black students move forward into careers in neuroscience.
The founding of AANRI was especially urgent, Hathaway said, after he learned that the genomic datasets that many researchers and clinicians relied on for precision care were based on the genes of European males. The limitations were immediately apparent, Hathaway said. People whose genetic data are underrepresented in these datasets may find that the clinical tests and treatments developed from those data may not work well for them (Landry et al., 2018). “A Johns Hopkins researcher identified that there were more than 3 million genes that were omitted because you didn’t have a very diverse genomic map,” he said. Hathaway then learned that the lack of diversity was echoed in brain samples—in 2016, researchers found that 81 percent of the large-scale genomic datasets come from people of European descent despite only being 16 percent of the world’s population (Popejoy and Fullerton, 2016). Without better representation, he said, “medical treatments and therapies will suffer, and humanity loses.” Institutions such as the Lieber Institute for Brain Development, which has more than 4,000 brain samples, including 700 of African ancestry, are invested to advance equity and diversity in science by partnering with organizations like AANRI.
One of the challenges of community engagement, Hathaway said, is that “communities themselves need to adopt models of engagement,” with a plan in place to engage with researchers and clinicians while protecting themselves. They could get young people from the community involved to get them excited about pathways into scientific research and get institutions involved to make sure research spaces are inclusive. “Collaboration is the best method of approach as we go forward,” he said, “and that means that there is going to be an inclusion of a lot of people.”
EMPOWERING AMERICAN INDIAN AND ALASKA NATIVE COMMUNITIES IN PARTICIPATORY RESEARCH
As a community-based participatory researcher, Nina Wallerstein, a professor of public health in the College of Population Health and the director of the Center for Participatory Research at the University of New Mexico, developed a model of best practices based on the past 17 years of her work with academic and tribal partners (Collins et al., 2018). In this model, she said, context matters, including the political context, the funding context, and who is determining the health issues of importance. When communities can fully participate as partners in clinical research, she continued, they are respected and recognized as being able to change the research questions being asked and the research and sampling methods just as much as any other member of the research team, which is empowering. In particular, Wallerstein emphasized the importance of written agreements between communities and research or clinical teams that lay out who is controlling the research resources and how they are being used (Figure 1).
Community-centered participatory research, she said, also recognizes that the community “has community-centered knowledge that they’re bringing into their research.” This knowledge can make community members “important partners for co-interpreting the data and for using the data to support better practice in outcomes.” With the community involved, the outcomes of the research will not be limited to only the health issues that the researchers are interested in, but could also include outcomes that transform the community, creating cultural resilience and support.
Several inclusive practices, Wallerstein said, come together in community-centered research. First, in community-centered research the community is respected and is part of decision making (Duran et al., 2019). They reflect on and develop the research goals and approach in conjunction with the researchers. The community also helps to determine whether the research fits within it, she said. “Does it fit with the Black community, does it fit with the Native community, does it fit with the Latino community?” Finally, the researchers could engage in a set of community-based research principles. Those practices together, she said, lead to outcomes which benefit both the researchers and the community.
Even the phrase “community-centered,” Wallerstein said, is important. “When you are targeting people, you’re othering them; when you’re centering them, you’re reclaiming the community at the center.” Part of that, she said, is the community being able to have their own data for their own work. She added that American Indian and Alaska Native tribes have been at the forefront of community-data sovereignty. They have their own institutional review boards (IRBs) which ensures that the communities have ownership of the data which “allows them beyond [academic institutions] to actually use the data for their own practice, their own programs, their own further research, their own questions that they’re asking.”
Wallerstein particularly highlighted the Navajo Nation IRB, which she said is the gold standard.3 While those in the community own the data and benefit from the data, they can also ensure that the data are brought back to the community. The research becomes about community benefit.
Part of the reason that tribal nations have such IRBs is that “American Indian and Alaska Native peoples are in fact tribal nations, which is to say that we are nations within a nation,” said Joseph P. Gone, a professor at Harvard University specializing in the psychology and mental health of American Indians and other Indigenous peoples. “This has to do with a long history of treaty making, which of course is international by design.” Because of their sovereignty, he continued, “tribal nations therefore exercise authority and power over research that is conducted in their midst.” Gone emphasized that this is especially important because so much previous research over the past century involving American Indian and Alaska Native people has been extractive and exploitative. For example, experiments carried out in the 1950s on Alaska Native peoples exposed them to radioactive iodine to find out the effects of the drug on thyroid tissue in cold weather (NRC and IOM, 1996). That research, he said, was not just exploitative but endangering.
Participatory research is especially important for American Indian and Alaska Native communities, Gone
said, because the effects of colonialism “have been disastrous for our health and well-being. These have included attacks on our identities and on persistence into the future.”
Gone concurred with Wallerstein that participatory research guarantees that tribal communities are a part of determining which research questions get asked and what happens to the data—not just how the findings are generated, but how they are interpreted, released, and publicly presented. For smaller tribes, he said, tribal coalitions “exist in most of the regions of the country, and they might be better able to provide the kind of partnership and engagement and capacity to make sure that research is helpful, effective, and illuminating.”
Engaging with American Indian and Alaska Native groups involves adopting relational research ethics, Gone said—in particular, the collective protection of people and not merely individual research subjects. Partnership is also important, he said, “because in a relational world you appreciate and recognize that everyone at the table has valuable contributions to make to the design of research, to the interpterion of research, to ideas about how to disseminate it, and so on.”
Tribal research review requires more than the sort of review carried out by a standard IRB, Gone said. “It is not merely concerned with protecting the rights of human subjects. Tribal nations have a stake in their reputations, in who holds and controls their data.” It is no longer viable for a researcher to come in, take data, go home, publish the results, and never come back, he said. “The old way of doing business is not appropriate or acceptable anymore when it comes to partnerships with tribal nations.”
Gone also acknowledged the challenges that researchers might face in funding participatory research with current research funding models since participatory research differs significantly from most of the research, particularly university-based research, that is funded by the National Institutes of Health (NIH). Current NIH funding is often based on fully laid-out research plans in applications, but for participatory research, Gone said, “one has to actually have resources to engage in that before-the-beginning kinds of partnerships that would determine even what the research looks like, what the design might be, how all this would be handled.”
Such participatory research would be useful for studies of Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD), Gone said. Unfortunately, There is relatively little research on these conditions for American Indian and Alaska Native communities, he said, and finding innovative ways to partner with tribes and tribal coalitions might make it possible to get a better understanding of AD/ADRD in these populations.
While American Indian and Alaska Native tribes have separate governance and therefore have the leadership to enforce community-centered practice, Wallerstein said, community-centered research is not limited to those with separate governance. “It should be a moral, ethical issue for all of us to follow the lead of the tribes in this and really bring that kind of ethic of data ownership back to the community.”
As researchers and clinicians practice community-centered research, Wallerstein added, it’s important to acknowledge that conflicts are going to arise. Ethnic and linguistic diversity exist in almost every community, she said, so it is important to strive for collective reflection, flexibility, and conflict management and not rely on one individual to represent an entire community. “You constantly need to think about who is missing at the table.”
DRIVING TRANSFORMATIVE CHANGE IN CLINICAL CARE
Hector M. González, a professor of neurosciences in the School of Medicine at the University of California San Diego, said that there is a fundamental lack of diversity in the clinical workforce. One pathway to a more diverse workforce, he said, would be to identify people with a passion for neuroscience work and provide opportunities and mentorship as they develop; those younger trainees will then form a new, more diverse set of clinicians who will be better equipped to create culturally appropriate tools to better diagnose and treat CNS disorders in diverse populations. He agreed with Hathaway that better
serving underserved populations will require datasets with better representation of these populations, and he said that for his own large cohort studies looking at dementia risk in Latino populations, he struggled to find representative samples (Quiroz et al., 2022). “This has been a real impediment to our research.” For those populations, he said, “surveillance systems are necessary not only to document the disparities, but also to determine whether or not our interventions are effective.”
Collecting data from these populations involves being able to engage with patients in their own language, conducting research in Spanish as well as English. When he started his practice, González said, tools to do that were completely unavailable.
There are also cultural differences between many of the clinicians and their patient populations. “It is a different community for some to work with,” he said. González works with patients at risk for dementia and noted that being able to engage with older populations by speaking the same language can help with recognizing their individual beliefs and values. By accounting for sensitivity to both language and culture, he said, one can develop tools to better work with these populations.
As part of work toward understanding cultural differences, Borba said, the NIMH is working to understand mental health through the lenses of different communities. “How communities define mental health, how they talk about mental health, the language they use, the symptoms they talk about,” don’t always correspond with official definitions or measures that researchers and clinicians use. Understanding those differences, she said, can help to decrease health disparities.
When addressing disparities in care for CNS disorders, “we can’t talk about behavioral health without really talking about stigma,” said Neeraj Gandotra, the chief medical officer for the Substances Abuse and Mental Health Services Administration (SAMHSA). Self-stigma, public stigma, professional stigma, and institutional stigma each have the potential to cause harm and reduce access to care.
Self-stigma, Gandotra said, is shame that patients feel about themselves or their conditions and has been related to “poor outcomes, failure to access treatment, disempowerment, reduced self-efficacy, and decreased quality of life.”
Public stigma (the attitude from the general public) and professional stigma can also harm, he said. Professional stigma can be the stigma that a clinician has toward their patients but can also refer to the stigma that other clinicians hold toward health care professionals working in behavioral health. Gandotra said he has faced this type of stigma in his work with substance use disorders. “I myself have often heard things like it must be tough to work with that population,” he said. “I don’t really think it’s much tougher than a primary care provider who works with those with diabetes or hypertension. We’re still trying to change behavior, improve compliance, and optimize outcomes.” But Gandotra said that the most troubling impacts of professional stigma are on the care and treatment that patients receive.
The final type of stigma is institutional, stigma coming from “an organization’s policies or culture of negative attitudes towards stigmatized individuals,” Gandotra explained. As an example, he said that an emergency department might have a policy that does not prioritize people with behavioral health conditions. In combination with additional barriers, such as a lack of beds, it can produce a crisis of care.
Stigma can exacerbate behavioral health problems such as substance use disorders, Gandotra said. “No one begins their substance use with thoughts that I want to be isolated, homeless, unemployed, stigmatized,” he elaborated. “These disorders live in the dark. They feel ashamed, they hide their use.” Most people start out trying to deal with an underlying disorder, such as pain, he said, and as their use escalates and becomes less voluntary, their social circles change, away from supportive friends or family and toward other people with substance use disorders. “Now, this is where the
disease thrives, their shame in interacting with others,” Gandotra explained. “But the disease cannot live in light, because when it is exposed, it cannot survive. So, to survive it isolates the person.”
When patients do seek help, the institutional and professional stigma they encounter may feed into their own self-stigma. “They need to hear words like hope, but they hear words like addict, junkie,4 and poor parent from intake workers and care providers,” Gandotra said. Removing stigmatizing language and using person-centered language in clinical settings could help to decrease stigma, and SAMHSA, the Department of Health and Human Services, and the NIH are all working to destigmatize the language used around behavioral health.5
ENGAGING COMMUNITIES THROUGH TRUSTED MEMBERS AND CULTURALLY APPROPRIATE MESSAGING
Stephanie Monroe, a vice president and senior advisor on health equity at UsAgainstAlzheimer’s, emphasized the importance of going back to basics when working with under-resourced communities. She cited seven basics that she relies on when building relationships with communities: “to be present, to be validated, to give before asking, to ask judiciously, to listen, to respond, and then to give back.” “You don’t get to sort of parachute in with a request and then leave,” she said. “That’s the quickest way to create a lack of trust in a community.” She also said that historically marginalized communities are no longer minority communities. As an example, Monroe cited the 2020 census, which showed that 57.8 percent of the U.S. population described themselves as White, non-Hispanic,6 but in clinical research, almost 95 percent of participants are White. Clinicians have no problem generalizing that data to the public, Monroe said. But as demographics in the United States shift, she wondered, will White people accept trials with 95 percent Black participants as generalizable? “I don’t think that will fly.” She emphasized the need for inclusivity: “We have a moral, ethical imperative that we really start talking about the two halves of America being those who are White and those who are non-White.”
Monroe’s organization, UsAgainstAlzheimer’s has developed new methods to meet and engage Black and Latinx patients and caregivers within their communities. In her previous efforts working on health issues, she said, she became frustrated. “We felt as if we were designing programs that were comfortable for us, those of us who are presenting.” However, attending presentations or seminars may not be feasible for people who work more than one job or have nontraditional work experiences. “We wanted to design something that would meet people where they were.” UsAgainstAlzheimer’s knew that early information was especially important in the case of Alzheimer’s disease, “where the treatments that are most effective, and especially the new treatments, happen very early in the disease.” This led UsAgainstAlzheimer’s to develop a play which is performed for free in under-resourced communities. The stage play, Forget Me Not, follows a family’s and community’s struggles as they face Alzheimer’s disease.7 In between the acts of the play, Monroe said, an information booth is set up in the lobby, offering food, information, and community support.
The play has now been performed in 27 cities and for 30,000 people, Monroe said, and has been an effective way to increase awareness of symptoms of Alzheimer’s disease. But it’s not the only form that outreach could take. “It could be a step show, it could be one of the things that the community typically enjoys,” she said, “and then let’s embed health care information, clinical trial recruitment, whatever, into that place where they’re already going to go, and then they’re surprised to see it.”
In planning this and other initiatives, Monroe said, “I always encourage people to bring in actual patients’ voices into these conversations” because patient’s voices
4 In this one instance in this proceeding in brief, the rapporteurs deviated from currently accepted terms when necessary to capture the language used by a speaker when the speaker selected it to make a certain point about the stigma faced by patient populations.
5 For example, see the National Institute on Drug Abuse’s Words Matter webpage: https://nida.nih.gov/nidamed-medical-health-professionals/health-professions-education/words-matter-terms-to-use-avoid-when-talking-about-addiction (accessed June 13, 2023).
6 For more information on the racial and ethnic breakdown of the U.S. population, see https://www.census.gov/library/stories/2021/08/2020-united-states-population-more-racially-ethnically-diverse-than-2010.html (accessed June 2, 2023).
“keep us real in terms of what we’re talking about and how we’re talking about things.”
Another method to reach communities where they are is through schools and child education campaigns, said Olajide Williams, professor and vice chair of the Department of Neurology at the Columbia University Vagelos College of Physicians and Surgeons. As a stroke neurologist at Harlem Hospital, he said, he ran into a problem with patients. Only 2 percent of the potentially eligible stroke patients were receiving treatment with tissue plasminogen activator (TPA). The hospital also treated many young stroke patients between the ages of 30 and 55. The problem, Williams realized, was that younger stroke patients were too often coming to the hospital too late for them to be eligible for TPA treatment.
Williams quickly recognized a knowledge gap: Eligible patients did not know the symptoms of stroke, were unaware that there was an available treatment, and did not know the treatment itself was time dependent. “You really needed to get to the hospital within 3 hours at the time to be eligible for this treatment,” he said.
To increase stroke literacy, Williams decided to try an intergenerational approach. “We developed an instrument to measure stroke literacy, and then we worked with a student advisory board of fifth graders to develop the Hip-Hop Stroke Program.”8 Hip-hop was an especially key part of the program. “Hip-hop was born in the Bronx, and it came from the African American community, and the genre has a deep emotional connection to young people,” he explained. Williams used hip-hop as a tool for increasing health literacy by getting fifth-graders excited to learn about stroke symptoms and healthy lifestyle behaviors and giving them the self-efficacy to intervene.
To develop the messaging, Williams and his colleagues partnered with a local hip-hop icon, Doug E. Fresh. “Think about music and its power on retention and memory and learning, think about a song that you remember the entire lyrics to,” he said. “We took stroke symptoms, stroke recognition, the time dependence of TPA, put it in the song, and ultimately it led to stroke-literate children. They were able to make their parents stroke-literate, [and] it diffused throughout the Central Harlem community.” The intervention increased TPA usage in the hospital from 2 percent to 8 percent. The program has since been scaled up to 42 hospitals across New York State (Williams et al., 2018).
Both Williams and Monroe highlighted programs using community health workers to reach under-resourced communities. “We need to be much more intentional and thoughtful and kind when we go to communities that have been not only marginalized but abused historically,” Williams said. “It is important that we work with them to develop trust, but we can’t wait 20 years. So, we’ve got to sort of build it while we’re flying it.” To do that, she said, “it is equally important for us at the same time to be using people on the ground who already have this trust.” For example, UsAgainstAlzheimer’s has built partnerships with nurses, training cohorts of 24 nurses at a time to become brain health ambassadors. “Nurses are some of the most trusted providers in the Black community,” she said. The method builds on the trust that already exists and uses places where people in the community already go.
Williams’ program also partners with people in the community to help improve community health. “We partnered with 52 churches across Northern Manhattan,” he said. “We trained about 210 community health workers from those 52 churches,” and 40 community health workers from local community-based organizations. The goal is to mitigate the social determinants of health. Members of the community are screened for social determinants of health such as housing and food insecurity, employment issues, and more. “Those that screened positive for a certain number of social determinants of health, that would trigger a referral in the system for a community health worker to arrive at the patient’s bedside, do an intake, and then conduct a home visit to the patient’s home where they support that patient across a whole host of social
services, issues related with food insecurity, housing, immigration, employment, helping them with their medical services, their disease self-management skills, and overall support,” Williams explained. He is now testing the intervention in a randomized clinical trial.
In more rural communities there can be additional barriers to care, particularly for behavioral health, due to lack of local clinicians. Before 2020, Gandotra said, many facilities did not feel prepared to provide telemedicine options. But the COVID-19 pandemic drove home the idea that telehealth for substance use treatment could increase both access and engagement, he said. SAMHSA is currently attempting to make the telehealth flexibilities put in place during the pandemic permanent, he said, with the added provision of audio-only for people who might not have broadband internet access or who might not be able to handle the technology required for a video meeting. “We hope that both of those are going to help expand treatment in the rural space.”
In a crisis, though, there may not be time for screening or telehealth. Gandotra spoke about the importance of the 988 mental health crisis line which Congress established in 2020.9 The line offers access to trained crisis counselors for people in mental health distress, whether they are having thoughts of self-harm, a substance use crisis, or any other mental health crisis. “It serves as a universal entry point so that no matter where you live in the U.S. you can find a trained crisis counselor,” he said. The line can be accessed by cell phone, land line, text, or online chat. The 988 crisis line could become widely used, Gandotra said, and, with the support of state and local leaders, could provide 24/7 access to trained counselors. “We ultimately envision a day where everyone across the country has someone to call, someone to respond, and a safe place to go.”
FUNDING THE PUSH TOWARD EQUITY
No funding organization can be considered patient-centered if it is not building equity into its funding opportunities, said Tracy Wang, the chief of comparative clinical effectiveness research at the Patient-Centered Outcomes Research Institute (PCORI). “This is very strongly built into each of the funding opportunities that PCORI is interested in offering,” she said.
Community engagement will make every other aspect of a research study easier, Wang said. “It is never too late to start engaging patients, communities, as well as other [partners] here.” She referred back to Hathaway’s point that trust is central to effective research partnerships and to patient enrollment and acknowledged that that trust can be difficult to build. Many of the researchers receiving PCORI funding, she said, have been tackling this issue by working closely with trusted community partners. PCORI-funded studies take different approaches to achieving equity, Wang said, and she presented a “wish list” of equity goals for the studies that PCORI funds, including innovations in workforce development, novel models of care delivery, new organizational policies, methods to improve community education and communication, clinical interventions, and using technology to improve access to care.
“From a funding standpoint, we try to put some teeth behind our wish list here,” Wang said. “We really want to make sure we’re supporting this [advancing diversity and health equity], and we also make sure we have resources getting delivered where they are needed.” She highlighted two ways in which PCORI is working to support equity goals. For those who have funding already but want to increase diversity and health equity goals in their work, she said, additional funding will be available for that purpose, which could be accomplished through recruiting diverse research sites, partnering with community organizations to better communicate research opportunities, or forming other partnerships to increase participant diversity. PCORI is also offering funding that is specifically focused on full partnership with the community involved in the research. The community, she said, is “at the table, they’re spelling out what they need in order to tackle the questions that are of interest to them, and they can leverage their full potential with direct resources from the award to answer the questions that they believe are important.”
Those seeking funding from PCORI, she continued, are now expected to have begun their community engagement before they apply. “As our reviewers are doing their peer review of submitted applications, they are weighing that engagement input,” she said. “They’re also looking to see where the stakeholders have facilitated or contributed to the design of the study to make it more feasible.” This community engagement, Wang pointed out, takes the research out of a pristine laboratory environment and brings it into the real world.
Another part of achieving equity, she said, is attaining more diverse research leadership. “If you have a steering committee or an executive committee for your trial that has all male, White leaders, it is very hard to establish any sort of credibility when you’re trying to say that we would like a diverse study population in our study,” Wang explained. Currently, PCORI is supporting training for a more diverse workforce and supporting more diverse research leadership. Supporting training in diverse early career researchers, she predicted, will mean more diverse leaders and committees in the future. Regarding diversity, Wang said, PCORI’s patient-centered research means that “we would like to learn, we would like to engage, and we would like to expand the ways we are emphasizing diversity and health equity as a national priority.”
In addition to PCORI’s ongoing efforts as a nonprofit, Gandotra said that SAMHSA is offering grants in efforts to expand treatment access. In rural communities that struggle with opiate addiction, for example, SAMHSA has implemented grants to train first responders to administer naloxone to reverse overdoses. “Comprehensive addiction treatment in rural communities is one of those areas where we really do need to do a lot more in terms of investments,” he said. SAMHSA also has a Rural Opioid Technical Assistance initiative in partnership with the National Institute on Drug Abuse,10 which provides training and technical assistance to help communities dealing with opioid and stimulant abuse.
Borba added that the NIH is also offering initiatives focused on community engagement. One of them, the Community Partnerships to Advance Science for Society (ComPASS) program,11 gives funding directly to community-based organizations, she said, and looks at what the community sees as the sources of its health disparities. The project emphasizes that, while academics have scientific training, the community can also provide valuable information and perspectives.
INCREASING COMMUNITY INVOLVEMENT TO DRIVE WORKFORCE DIVERSITY
One cross-cutting topic that threaded through all three of the workshops addressing CNS health disparities, noted Katja Brose, a science program officer at the Chan Zuckerberg Initiative was the importance of diversity in the workforce. “I think often people see diversity in workforce or who is doing the work as separable from the work that’s being done, the questions that are being asked,” she said, but diversity in the research workforce is absolutely crucial to the success of community-centered work.
Wallerstein emphasized that senior faculty have a responsibility to support junior faculty in prioritizing community engagement. “There are a lot of junior faculty coming in from diverse, underrepresented backgrounds,” she said. “They’re connected to their communities. They want to stay connected to their communities,” and support from senior faculty can help those junior faculty continue their engagement with their communities. Recognizing the pressures of the tenure clock, long-term engagement and community-building can be difficult. Wallerstein suggested that early-career investigators in academia consider joining more established research teams to help them get publication records quickly, allowing more freedom to invest their time in partnerships with communities and establish their own research. That freedom, she said, will come from inhabiting a safe space within the academic structure. But she also noted that academic structures themselves could change. “We need to change our rules,
10 For more about the Rural Opioid Technical Assistance program, see https://www.samhsa.gov/rural-opioid-technical-assistance-rota (accessed May 26, 2023).
policies, norms, practices in academia to really support individuals who want to move in this direction.”
Part of that change in structure could come from changes in academic and clinical education, Williams said. “We need more systematic curricular changes that address social determinants of health, that address antiracism, that address some of these fundamental health equity issues in a much more structured matter within these curriculums,” he said. “I think there needs to be a really massive, massive push to create much more robust structures within our institutions of learning around these issues, so that the graduates that we produce are empowered to address them in a much more aggressive way.”
The early introduction of equity into training curricula could also help to combat some of the professional and institutional stigma patients face, Gandotra agreed. With less stigma, patients could be more likely to receive referrals and resources immediately. The most effective way to instill those changes, he said, “is at the curriculum level, the licensing level, and the testing level. If the medical schools test for it, the schools will teach it.”
Wang and Hathaway both emphasized the importance of partnering with historically Black colleges and universities (HBCUs) to increase workforce diversity. In one of her last academic grants, Wang said, she and her colleagues invited students from HBCUs and other minority-serving institutions to participate in research, learning about clinical studies as they went. Those same students also acted as ambassadors for the research back to their local communities.
Hathaway highlighted an AANRI program that intertwined the neuroscience education of local high school students with visits to research laboratories at the Lieber Institute for Brain Development. This close interaction with students, he said, allowed the neuroscience information they were providing to be integrated into the language used by the community. AANRI also used social media, bringing on board one of the creators of Black in Neuro,12 a grassroots network of Black and non-Black professionals in neuroscience-related fields that began on Twitter in July 2020, to spread information about AANRI and its programs. “When you identify influencers in communities you are able to get the word out at a very real way,” Hathaway said.
The program also has “cross-pollination” between the Lieber Institute for Brain Development and scientists at Morgan State University. “It was driven by the community, to bring these connectors together,” he said. “But the goal has to be how do we use, how do we develop research that benefits the community in a very real way, so that their quality of life is better.”
USING KNOWLEDGE TO MOVE TOWARD EQUITY
One of the major ideas that emerged from this workshop, Hurd said, was the impact of communicating and bringing underrepresented voices to the table with respect. But even “bringing” might not be good enough, she said, suggesting that meeting people where they are could generate more communication and respect.
In concert with the other two workshops in the series, she said, it became clear that “we know where the problems are in terms of the structural policies and the issues in our countries that have led to these disparities in CNS disorders.” Hurd remarked that the workshops highlighted the fact that the United States contains many different groups that could work together, “I think by having the discussions with all of the groups, we actually have the equality and equity that we say that we’re now wanting in our country.” The next issue will not be defining the barriers to equity, she said, but whether “we actually have the power now to change the future.”
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DISCLAIMER This Proceedings of a Workshop—in Brief has been prepared by Bethany Brookshire, 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 Alvin Hathaway, African Ancestry Neuroscience Research Initiative. Leslie Sim, National Academies of Sciences, Engineering, and Medicine, 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; American Brain Coalition; Alzheimer’s Association; 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; Paul G. Allen Frontiers Group; The Michael J. Fox Foundation for Parkinson’s Research; National Multiple Sclerosis Society; National Science Foundation (DBI-1839674); One Mind; 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/04-25-2023/addressing-health-disparities-in-central-nervous-system-disorders-virtual-workshop-3.
SUGGESTED CITATION National Academies of Sciences, Engineering, and Medicine. 2023. Health disparities in central nervous system disorders: Driving transformative change. Proceedings of a workshop—in brief. Washington, DC: The National Academies Press. https://doi.org/10.17226/27191.
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