Neurological Health Equity: Research for All

Today, I am happy to announce that the findings and recommendations from our two-year strategic planning effort for health disparities and equity research are published in a special issue of Neurology. I extend my deepest thanks to the dozens of expert researchers and clinicians that served on a working group of the National Advisory Neurological Disorders and Stroke (NANDS) Council for Health Disparities and Inequities in Neurological Disorders. This working group of dedicated individuals went above and beyond, providing recommendations that were adopted by the NANDS Council, which the NANDS Council then provided to me. They have also produced a series of well-researched, in-depth articles addressing several interrelated topics, including social determinants of health (SDoH), community engaged research, diversifying the workforce, diversity, equity, inclusion, accessibility, and health equity research training, and public communication. The special issue serves as a guide for the neuroscience and neurological health community to identify and seize high impact opportunities to improve neurological health for all people, a core component of our mission statement. The priorities are an extension of the 2021-2026 NINDS Strategic Plan and are published with the expectation that future NINDS topical and disease-specific strategic plans will revisit these recommendations as applicable to different research areas. Most importantly, NINDS emphasizes the critical need to follow up data collection efforts with tests of interventions to enhance health equity.

The recommendations focus on several interrelated topics:

  • Social determinants of health (SDOH)
  • Community-engaged research approaches in clinical interventions
  • Neuroscience workforce diversity
  • Diversity, equity, inclusion, and accessibility (DEIA) and health inequities training
  • Communication and engagement with diverse communities

For the high level takeaways, visit the NINDS Strategic Plan and Recommendations for Advancing Health Equity in Neurological Disorders website and read the Executive Summary, which provides an excellent guide to the issue and lays out a set of consolidated, synthesized recommendations that cut across the sub-topics outlined above. The special issue also includes two additional studies; the results from an original analysis on lives lost due to disparities in neurological health and findings from a portfolio analysis and public stakeholder input, carried out by the working group and NINDS staff, respectively. Lastly, the working group presents a Social Determinants of Health Framework for Health Equity and its underlying principles. With this announcement, I’m pleased to formally adopt this model and encourage the entire NINDS research community to use it as a guide to design research that can improve the quality of neurological research and achieve neurologic health equity.

Box and Arrow model to illustrate the The NINDS Social Determinants of Health Framework for Addressing Health Inequitie
The NINDS Social Determinants of Health Framework for Addressing Health Inequities is a guide to improve the quality of neurological research, achieve neurologic health equity, and reach social justice. Download PDF version of the NINDS Social Determinants of Health (SDOH) Framework (pdf, 1363 KB)

Now we turn to the important work of implementing the recommendations. Previously, we highlighted several health equity programs and workforce diversity efforts at our May 2023 Council Meeting. Dr. Richard Benson, Director of the Office of Global Health and Health Disparities, and Dr. Cheryse Sankar, Program Director in the Office of Global Health and Health Disparities, presented updates on NINDS’s health equity strategic plan implementation, which included efforts that stemmed from the working group’s recommendations on addressing social determinants of health, community engaged research, health equity research training, and capacity building. During the meeting, the Community-Engaged Health Equity Research in Neuroscience (HERN) initiative, NINDS’s largest health equity research program in several years, was approved. This new program is a multi-pronged initiative focused on understanding specific drivers of health disparities and barriers to equity; developing sustainable interventions; and enhancing training and capacity to conduct rigorous community-engaged research. Importantly, this initiative is agnostic to the neurological disease area of study.

One working group recommendation is to involve community partners early and continuously throughout the research process. To ensure the success of HERN and related efforts, NINDS will provide new guidance on our expectations for conducting rigorous community engaged research, both for applicants and peer reviewers. As such, the Community Engaged Research Inclusion (CERI) plan will be required in HERN applications and other selected clinical research NOFOs, complementing the Plan to Enhance Diverse Perspectives, as initially piloted by the NIH BRAIN Initiative

The five year analysis of NINDS’s health equity research projects included in the Neurology issue made it crystal clear that we need to support more health equity projects across the board. Our goal now is to jumpstart the next generation of health equity neuroscience research. In addition to large scale initiatives like the HERN, several other initiatives and new projects have launched in the last 2 years. I’m especially excited to see that we’re beginning to receive applications with innovative approaches to address social determinants of health and structural racism.

The working group advocated strongly for the need to improve the proportion of underrepresented minorities in the neuroscience and neurology workforce. As Dr. Michelle Jones-London, Director of NINDS’s Office of Programs to Enhance Neuroscience Workforce Diversity (OPEN), described during May Council, NINDS continues to add to and enhance our suite of programs to ensure a vibrant, talented, and diverse neuroscience workforce. These programs include Enhancing Neuroscience Diversity through Undergraduate Research Education Experiences (ENDURE), the NIH Blueprint and BRAIN Initiative Diversity Specialized Predoctoral to Postdoctoral Advancement in Neuroscience (D-SPAN) Award, and a new NOFO developed by NINDS with nine other Institutes and Centers, the Research Opportunities for New and "At-Risk" Investigators to Promote Workforce Diversity R01. These are just a few examples of what I believe are the most exciting collection of innovative workforce diversity efforts that NIH has to offer.

Regarding public health communications, the working group stressed the importance of conducting formative research to better understand the target audience. To this end, I’m very proud of NINDS’s Mind Your Risks® campaign, which I highlighted earlier this year. Re-imagined in 2021, the campaign aims to raise awareness about the importance of controlling blood pressure among adult Black men ages 28 to 45, a population with an increased risk of high blood pressure, which can lead to stroke and dementia later in life.

To begin exploring what we've come up with, I invite you to visit the strategic planning webpage and read the executive summary. Our efforts at NINDS are part of a wave of activity across NIH, including the groundbreaking work of the National Institute of Minority Health and Health Disparities, trans-institute efforts like NIH UNITE – an effort to end structural racism – and the Common Fund (see Transformative Research to Address Health Disparities and Advance Health Equity and Community Partnerships to Advance Science for Society (ComPASS)). As we work to carry out this important effort, I am reminded of a perspective article on health disparities in Stroke that Dr. Benson and I wrote, where we conveyed that  “The national conscience has opened to a new appreciation for the need for action to promote health equity and end the web of conditions that have perpetuated unhealthy disparities.” These collective efforts reflect our and NIH’s broader commitment to end structural racism and racial inequities throughout the biomedical research enterprise.

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