The term “HEADWAY” means moving forward or making progress, especially when circumstances make things slow or difficult. When it comes to health equity in neurological disorders, never has a term more accurately described a process. In 2010, Dr. Story Landis—my predecessor as Director of NINDS—charged an advisory working group of NANDS Council to review the state of disparities research in neurological health and generate recommendations on how the Institute could make progress against such disparities(pdf, 196 KB). Now, a decade later these same neurological health disparities remain. Under the leadership of Dr. Richard Benson, the NINDS Office of Global Health and Health Disparities – in collaboration with other NINDS offices and staff – intends to expand and strengthen research efforts to design solutions that can make a difference for those neurohealth inequities.
Historically, NINDS’s largest investment in neurological disparities has been in stroke research, though as we look to the future, we recognize we need to expand to address other disorders within our mission. NINDS supported several long-running epidemiological studies (e.g., REGARDS, NOMAS, BASIC, GCNKSS) that defined and quantified health inequalities in stroke. Stroke is considered in large part to be preventable and therefore we launched the Stroke Prevention/Intervention Research Program was at four institutions to test interventions that address major contributors to stroke disparities. Even so, the CDC reports the risk of stroke is nearly twice as high for blacks as for whites, and blacks have the highest rate of death due to stroke. Though death rates have declined for decades among all race/ethnicities, Hispanics have seen an increase in death rates since 2013.
Stroke mortality rates have dropped across all race/ethnicities from 2008 to 2018. Mortality rates improved significantly from 2008-2012 and have largely plateaued since then. The total population achieved ~12% decline in mortality, but the groups with the least improvement were Hispanic and American Indian/Alaskan Native. Source: National Vital Statistics Sample 2008-2018 (latest data available as of Oct 2020)
American Heart Association: 2020 Impact Goal Progress (PDF, 192 kb)
Because NINDS-funded research shows a close correlation between cerebrovascular disease and the risk of cognitive impairment and dementia with aging, these disparities may extend to late-life neurodegenerative disorders as well.
We have learned much over the last ten years. A concerted effort to reduce disparities in blood pressure control succeeded in Western states, though several NINDS and other NIH-funded studies have shown that uncontrolled hypertension is still much more prevalent in certain racial and ethnic populations as compared with White Americans. Why should one’s chance of dying be driven by one’s zip code? Evidence from REasons for Geographic and Racial Differences in Stroke (REGARDS), a study focusing on understanding the drivers for the “stroke belt” in the southeastern US (see the dramatically dark purple regions in figure below) suggests that about half of the Black-White stroke disparity can be explained by these traditional stroke risk factors and socioeconomic status, half is unexplained and potentially driven by differential impact of risk factors by race as well as social determinants of health (e.g., stress, education, and psychosocial factors, including depression and systemic discrimination).
The country’s highest death rates from stroke are in the southeastern United States. The NINDS-supported REasons for Geographic and Racial Differences in Stroke (REGARDS) is a study focusing on understanding the drivers for this “stroke belt."
Social determinants of health factor prominently in our heterogeneous society. As long as these exist, turning the needle on the burden of neurological disease for all Americans requires creative solutions that result in sustainable health interventions that work in the most challenging settings. The inaugural workshop, Health Equity and Actionable Disparities in Stroke: Understanding and Problem-solving (HEADS-UP), a satellite event of the International Stroke Conference held in February 2020, was a step in that direction. In partnership with the American Heart Association/American Stroke Association, NINDS hosted this first-ever multidisciplinary scientific forum focused on race and ethnic inequities in cerebrovascular disease. The HEADS-UP event will be held annually, and it has the original overarching goal of reducing inequities in stroke, accelerating translation of research findings to improve outcomes for race/ethnic minorities who reside in the United States, and mentoring the next generation of stroke inequities researchers1. HEADS-UP was featured in seven articles in the October 2020 edition of Stroke. Many emerging and potentially promising research and intervention approaches were discussed, as was the sobering consensus that no effective stroke disparities solutions have been scaled up beyond their study cohort into routine real-world practice on a health care systems level. Vigorous discussion was devoted to how we can change that reality with a deeper understanding of social determinants of health and a commitment to designing sustainable, scalable interventions that address their health impact.
As underscored in our health disparities mission statement, NINDS is deeply committed to the elimination of all health disparities and inequities in all neurological conditions and care. These inequities are based on their racial or ethnic group, religion, socioeconomic status, gender, age, or mental health; cognitive sensory or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination, stigmatization, or exclusion. The current COVID-19 pandemic has only accentuated disparities in those who have been infected or have died, and potentially those who may develop persistent COVID neurological complications. Further, beyond stroke, many of the same vascular risk factors and social determinants are also linked to cognitive impairment and dementia. For example, Hispanics and Black Americans are most at risk for Alzheimer’s disease and related dementias, and the burden of these conditions is expected to increase over time.
With many of these issues in mind, we have embarked upon a new strategic planning process for achieving “Health Equity” in neurological disorders through research, with a special focus on addressing biologic, sociodemographic, economic and other determinants of health. This effort has been designed to be data-driven, standardized, and transparent as well as to assemble a wide range of perspectives and stakeholders. Steps in the planning process and stakeholder engagement thus far have included:
- Forming a Working Group of NANDS Council with several notable leaders in health disparities research to advise us on the current state of the science and highest research priorities.
- Standing up a trans-NINDS Health Equity Workgroup, which includes more than 40 staff from across the institute, to analyze our research portfolio and how it aligns with the current evidence base.
- Establishing a trans-NIH working group with several other Institutes and Centers to share information and coordinate programs in neurological health disparities.
- Issuing an RFI, which garnered nearly 150 responses, to gather information from extramural researchers and the public on known areas of disparity/inequity in neurological disease, treatment, and provision of services across the lifespan.
The capstone of this planning effort will be a public three-day workshop on September 22-24, 2021, titled HEADWAY: Health Disparities And Inequities in Neurological Disorders Planning Workshop. At the end of this process, we will have identified and made transparent to the public several priority areas to guide the biomedical community and inform NINDS initiative and resource development over the next decade, with measurable and evaluable outcomes that can be used to track progress. I cannot underscore enough that pursuing health equity means striving for the highest possible standard of health that works for those at greatest risk of poor health, based on social or other conditions. This responsibility falls on our workforce, and while additional NINDS efforts seek to diversify the biomedical workforce, this burden should be borne by all of us. Recognizing the societal headwinds that make this a daunting task, NINDS redoubles our commitment to health equity, and we are eager to partner with all who share in this commitment.
1Inaugural Health Equity and Actionable Disparities in Stroke: Understanding and Problem-Solving Symposium, AHA Journal, October 26, 2020
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