The NINDS is deeply committed to the elimination of all health disparities and inequities in neurologic conditions and care through the funding of high-level research, from basic science through outcomes research aimed at identifying, monitoring, and targeting biologic, environmental, social, and health care system factors that confer neurologic disease and its treatment disproportionately and adversely.
In 2010, the NINDS organized a workgroup of the National Advisory Neurological Disorders and Stroke (NANDS) Council to generate recommendations on how the institute should address disparities and inequities in neurological disorders (2011 Report of the NINDS Advisory Panel on Health Disparities Research(pdf, 369 KB)). This workgroup recommended that a transparent and systematic approach be developed to enumerate the issues and guide funding decisions. Based on these recommendations, in 2020, the NINDS Office of Global Health and Health Disparities in collaboration with the NINDS Office of Science Policy and Planning, embarked on a health equity strategic planning process to identify research priorities and develop a comprehensive plan to guide research investments to advance health equity planning for the institute over the next 5 – 10 years.
NEW Release! The NINDS Health Equity Research Strategic Planning Process and Recommendations SupplementThis supplement features 10 manuscripts, including an executive summary, results from a mortality analysis, five manuscripts detailing the subcommittee recommendations, NINDS health equity framework, portfolio analysis, and RFI analysis.
NINDS Featured Director's Messages Highlighting Strategic Plan
- Neurological Health Equity: Research for All | August 15, 2023
- Making HEADWAY on Inequities in Neurological Health | January 11, 2021
2020 NANDSC Health Equity Working Group
Charge of the Committee
This new NANDS Working Group was charged with providing scientific guidance via NANDS Council to NINDS on how best to advance research on health disparities and health equity, with a focus on addressing biologic, socio-demographic, economic, and other determinants of health.
Consistent with this charge, this NANDS-WG:
- Reviewed and assisted in the dissemination of the request for information (RFI). The purpose of the RFI aimed to obtain community/stakeholder input regarding areas of disparity/inequity in neurological disorders, care/services and opportunities for intervention, implementation, and dissemination research.
- Reviewed aggregate responses from the RFI, reviewed NINDS portfolio and literature analyses, giving consideration to: (a) those conditions or groups of conditions with higher overall burden of disease, (b) areas with clear definable, valuable, and treatable targets, (c) unique issues related to the nature of the neurological condition (e.g. stigma), and (d) social impact.
- Determined gaps, omissions, and ways to optimize this HD strategic planning process.
- Summarized the “state-of-the science” and potential opportunities for disparities and inequities interventions, relevant to the research areas supported by NINDS, other NIH ICOs, and other collaborative federal/non-federal partners. Areas for consideration include basic and clinical research, health services, policy, epidemiological interventions, and implementation/dissemination strategies.
Process, Deliverables, and TimeframeThis working group of the NANDS Council:
- Assisted NINDS in seeking input broadly from stakeholders and other federal agencies on a 5-10 year strategic plan for HD research.
- Produced a research framework that delineates the spectrum of basic to applied research on the social and biological determinants of neurological health.
- Advised on and participate in the NINDS Health Disparities and Inequities in Neurological Disorders (HEADWAY) Workshop on September 22-24, 2021.
- Assisted in documenting the strategic planning process.
- Presented its final report of findings stemming from the above charge to the full NANDS Council.NANDSC Advisory Council Meeting - February 2022View the 2022 February NANDS Advisory Council Meeting presentation on the Strategic Planning Process and WG Recommendations.
(Please note this video starts at the 1:08:40 time mark.)
NANDSC Working Group Members
Alexandra M. Sims, M.D., M.P.H., FAAP.
University of Cincinnati Department of Pediatrics
Cincinnati Children's Hospital Medical Center
Amytis Towfighi, M.D.
Los Angeles County Department of Health Services>
Bernadette Boden-Albala, Dr.PH, M.P.H.
University of California, Irvine
Binny Chokshi, M.D.
Division of Adolescent and Young Adult Medicine
Children's National Hospital, Washington, D.C.
Bruce Ovbiagele, M.D., M.A.S.
University of California, San Francisco
Carolyn Jenkins, DrPH, MSN, MS, RN, RD, LD,FAANZ
Medical University of South Carolina
Christin Veasley, B.Sc.
Chronic Pain Research Alliance
Daniel Lackland, DrPH
Medical University of South Carolina
Darrell J. Gaskin, Ph.D., M.S.
Hopkins Center for Health Disparities Solutions
Johns Hopkins Bloomberg School of Public Health
David Brody, M.D., Ph.D.
Uniformed Services University of the Health Sciences
Edwin Trevathan, M.D, M.P.H.
Vanderbilt Institute for Global Health
Derek M. Griffith, Ph.D.
Geoffrey Ling, M.D., Ph.D.
On Demand Pharmaceuticals
Johns Hopkins University
Gerald Griffin, Ph.D.
Girardin Jean-Louis, Ph.D.
NYU Langone Health
Goldie Smith-Byrd, Ph.D.
Wake Forest School of Medicine
Jennifer J. Manly, Ph.D.
Karen C Johnston, M.D., M.Sc.
University of Virginia
Kofi Essel, M.D., M.P.H.
Children’s National and The George Washington University School of Medicine and Health Sciences (GWUSMHS)
Leslie Skolarus, M.D.
University of Michigan
Lilyana Amezcua, M.D., M.S.
University of Southern California (USC), Keck School of Medicine
Maria Glymour, ScD, M.S.
University of California, San Francisco
Nimish Mohile, M.D., M.S., FAAN
University of Rochester
Patrick A. Griffith, M.D., FAAN
Morehouse School of Medicine
Rachel P. Berger, M.D., M.P.H.
University of Pittsburgh, UPMC Children’s Hospital of Pittsburgh
Rachel Anne Whitmer, Ph.D.
University of California Davis
Salvador Cruz-Flores, M.D., M.P.H.
Texas Tech University Health Sciences Center
Sameer Seth, M.D., Ph.D.
Baylor College of Medicine
Spero M. Manson, Ph.D.
(Pembina Chippewa), Centers for American Indian and Alaska Native Health
American Stroke Association
American Heart Association (AHA)
Steven H. Woolf, M.D., M.P.H.
Virginia Commonwealth University
Susana Ramírez, Ph.D., M.P.H.
University of California, Merced
Virginia J. Howard, Ph.D., FAHA, FSCT
University of Alabama at Birmingham
Wally R. Smith, M.D.
Virginia Commonwealth University (VCU)
Major Inputs to the Strategic Planning Process
- NINDS HEADWAY Workshop on September 22-24, 2021 (Capstone of the process)
- Request for Information (RFI): March 31 – July 15, 2020
- NINDS National Advisory Council (NANDSC) health equity Workgroup with several notable leaders in health disparities research; 6 subcommittees
- Trans-NIH Work Group (16 ICs) identifying evidence-based strategies and opportunities for future collaboration
- NINDS Health Equity Workgroup (HEW): Health disparities portfolio analysis over the last five years (2016 – 2020)
- 2011 Report of the NINDS Advisory Panel on HD Research(pdf, 369 KB)
Outputs: Key Findings, Recommendations, & PublicationsReports from NINDS Organized NANDS Council Health Equity Workgroup:
- Age-adjusted mortality analysis for neurologic diseases by Race-Ethnicity in the United States between 2010-2019.
- Workgroup subcommittee recommendations on HE interventions, social determinants of health clinical research, workforce development, and communication/engagement. Five additional manuscripts (10 in total) were submitted and published in Neurology Journal.
- NINDS Social Determinants of Health (SDOH) Framework for Addressing Health Inequities.
Neurology Supplement Publication (August 15, 2023)
NINDS SDOH Framework for Addressing Health Inequities
The National Institute of Neurological Disorders and Stroke (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. The framework is presented linearly, but the pathways linking the determinants of neurological disease, health, and well-being are more complex than those demonstrated by the arrows included in the figure. The framework names racism and other structural “upstream” factors that have been understudied as points of intervention in neurologic and stroke research. The framework helps to enhance underlying theory, improve study design, and refine implementation design by highlighting the different levels and scale of causation by refining efforts to contextualize the interpretation of research findings. By including the structural and intermediary social determinants and noting how they may have an impact on neurologic health, the framework suggests new avenues to improve neurologic and stroke research.
NINDS High-Level Health Equity Recommendations
Increase health equity research funding across all neurological disease areas to identify/validate approaches to eliminate disparities, identify/define how social determinants of health (SDOH), structural racism, and provider bias drive inequity, and increase minority participation in clinical trials.
Develop priority areas to address specific SDOH-related questions across the lifespan, with the goal of developing multidisciplinary targeted interventions, co-created with patients, families, and community stakeholders, to address adverse childhood experiences (ACEs) and other SDOH that are uncovered in the clinical setting.
Prioritize the assessment, screening, measurement, and interventions on SDOH and developing guidelines for researchers and clinicians to conduct needs assessment on the burden of SDOH in their clinical setting and their capacity to screen for and address the SDOH in research using accepted screening tools and common data elements.
Prioritize evaluation of the most relevant and impactful interventions for addressing the drivers of economic instability (poverty, housing, food insecurity, employment) and the impact on neurological health.
Develop and validate SDOH-informed instruments to promote detection and assessment of neurological disorder health disparities (HD) specific to diverse populations vulnerable to HD.
Involve the community early – Specify early community engagement in funding announcements and include in reviewers’ evaluations.
Encourage reporting of community engagement strategies in all NIH-funded research submitted to peer-reviewed journals. Specify the importance of engaging with under-represented communities in funding announcements and in reviews of applications.
NINDS should fund a range of research efforts aimed at increasing understanding of, identifying, and implementing effective strategies to address community distrust in science and scientists.
NINDS should fund qualitative research targeting at-risk populations to better understand how they make health decisions (before the inception of a disease), how they prefer to receive health information, and what motivates them to make healthy behavioral changes that may prevent the future onset of neurological disease.
Build and disseminate curricula that address challenges in community-based participatory research.
Include best practices in partnering with community organizations as part of health inequity research training. These activities may include mentoring from experienced community health workers and others who can help ensure that research activities have optimal potential to benefit the communities of interest.
Allocate funding to support a network of partnerships between research-intensive institutions and historically minority colleges and universities to allow exchange of health equity research ideas, cultural sensitivity awareness, and access to minority investigators and communities.
Support career development for minority junior investigators through multiple mechanisms (e.g., Diversity supplements, K-awards)
Require Certificate of Completion following completion of key training activities; embed health disparities training in all career development and training grant applications; develop culturally aware mentoring programs or incorporate cultural sensitivity training into planned or existing programs.
Create a new NINDS funding mechanism to promote health equity research aimed at, not only URM investigators interested in this line of work, but also at non-URM scientists, who are solely interested in conducting health equity research, but also in developing opportunities to train both URM and non-URM junior investigators who are developing academic careers in health equity research.
Provide funding and logistical support for grant-writing workshops for trainees from underrepresented backgrounds. Proactively track and invite trainees with diverse backgrounds who have not yet secured competitive research funding.
Emphasize interventional research as a major component of training programs for scientists (of all backgrounds) focused on health inequities research.
Prioritize developing SDOH-informed instruments, national HD neurological disorder disease surveillance, and a centralized neurological disorder HE database. Build infrastructure to generate and validate harmonized national surveillance of neurological disease progression among HD vulnerable populations across the life span. This will support the development of early detection and prevention strategies, appropriate assessment instruments, and prompt evidence-based care.
Ten Manuscripts (Open Access)
The contextual information and recommendations presented here are based on published research, expert opinion, and community stakeholder feedback. We hope this Neurology supplement will lead to impactful research and greater equity in neurological care, service, and outcomes.
The following 10 manuscripts are not listed in any particular order of priority:
NINDS Health Equity Strategic Planning Process and Recommendations (Neurology Supplement Index)
Title and Authors
Karen C. Johnston and Edwin Trevathan, co-chairs of the NANDSC Working Group for Health Disparities and Inequities in Neurological Disorders
The authors provide an overview of the NINDS health equity strategic planning process, a listing of consolidated recommendations, and a guide to navigating this supplement.
Steven H. Woolf, Derek A. Chapman, Jong Hyung Lee, Karen C. Johnston, Richard T. Benson, Edwin Trevathan, Wally Smith, Darrell J. Gaskin
The authors describe a novel calculation of the societal cost of excess deaths from neurologic conditions in the US due to race and ethnic health inequities.
Amytis Towfighi, Rachel P. Berger, Alexandra M.S. Corley, M. Maria Glymour, Jennifer J. Manly, Lesli E. Skolarus
The authors describe screening, epidemiology, and intervention-related priorities for the NINDS to pursue in supporting SDOH research, with the goal of achieving health equity.
Bernadette Boden-Albala, Vida Rebello, Emily Drum, Desiree Gutierrez, Wally R. Smith, Rachel A. Whitmer, Derek M. Griffith
The authors provide a scoping review highlighting the complexities of community engaged research in neurologic interventional studies, examined through a health disparities and social justice lens.
Bruce Ovbiagele, Lilyana Amezcua, Salvador Cruz-Flores, Patrick Griffith, Girardin Jean-Louis, Carolyn Jenkins, Virginia Howard, Goldie Smith-Byrd
An overview and recommendations regarding improvement of the current state of neurologic disparities curricula and research training in the United States.
David L. Brody, Rebecca F. Gottesman, Gerald Griffin, Zayd M. Khaliq, Daniel T. Lackland, Geoff Ling, Nimish Mohile
An overview and recommendations to expand and develop NINDS training programs to promote diversity, equity, and inclusion among the research workforce and to encourage and amplify research in health disparities in neurologic diseases.
A. Susana Ramirez, Stephanie M. Mohl, Christin Veasley, Sameer A. Sheth
Recommendations for evidence-based strategies and best practices to communicate scientific information on neurologic health disparities and NINDS funding programs to diverse communities.
Derek M. Griffith, Amytis Towfighi, Spero M. Manson, Erica Littlejohn, Lesli E. Skolarus
A novel framework contextualizing behavioral, biological, social, and economic factors, for researchers to consider when developing interventions to reduce inequities in neurologic disease.
Sara Dodson, Shardell Spriggs, Ryan Calabrese, Stacey Chambers, Marguerite Mattews, Cheryse Sankar, Alisa Schaefer, Christine Swanson-Fisher, Devon Crawford, George Umanah, and Richard Benson
An overview of the NINDS health disparities/health equity research portfolio analysis procedures and results.
Erica Littlejohn, Naomi Booker, Stacey Chambers, Jemima Akinsanya, Cheryse Sankar, Richard Benson
NINDS Request for Information results and analyses.
Special thank you to all NIH and NINDS staff, along with all NANDSC contributors who facilitated this impactful strategic planning process, organizers of the HEADWAY workshop, and all participants in the workshop and RFI respondents for their valuable contributions.
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