NANDSC Working Group for Health Disparities and Inequities in Neurological Disorders

NANDSC Working Group for Health Disparities and Inequities in Neurological Disorders

Background:

The NINDS is deeply committed to the elimination of all health disparities and inequities in neurological conditions and care through the funding of innovative research, from basic science through implementation/dissemination, aimed at identifying, monitoring and targeting biologic, environmental, social, behavioral, and healthcare system factors related to race/ethnicity, socioeconomic status, geographic location, sex, sexual orientation, gender identity, educational attainment, age, and disability, 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). This workgroup recommended that a transparent and systematic approach be developed to enumerate the issues and guide funding decisions. Based on these recommendations, the NINDS/Office of Global Health and Health Disparities (OGHHD) in the Division of Clinical Research (DCR) is leading a strategic planning process to guide NINDS’s research efforts in this space for the next 5-10 years. It is NINDS’s goal that this process be data-driven, standardized, and transparent, and will reflect a wide range of perspectives and stakeholders interested in the elimination of disparities and inequities in neurological care, outcomes, treatment, access and provision of services, and research.

Charge of the Committee:

This new NANDS Working Group will provide 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 will:

I. Review and assist in the dissemination of the request for information (RFI). The purpose of the RFI is to obtain community/stakeholder input regarding areas of disparity/inequity in neurological disorders, care/services and opportunities for intervention, implementation, and dissemination research.

II. Review aggregate responses from the RFI, review 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, evaluable, and treatable targets, (c) unique issues related to the nature of the neurological condition (e.g. stigma), and (d) social impact.

III. Determine gaps, omissions, and ways to optimize this HD strategic planning process.

IV. Summarize 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 Timeframe

This working group of the NANDS Council will:

  • Assist NINDS in seeking input broadly from stakeholders and other federal agencies on a 5-10 year strategic plan for HD research.
  • Produce a research framework that delineates the spectrum of basic to applied research on the social and biological determinants of neurological health.
  • Advise on and participate in the NINDS Health Disparities and Inequities in Neurological Disorders (HEADWAY) Workshop on September 22-24, 2021.
  • Assist in documenting the strategic planning process.
  • Present its final report of findings stemming from the above charge to the full NANDS Council.

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

Christin Veasley, B.Sc.

Chronic Pain Research Alliance

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

Gerald Griffin, Ph.D.

Hope College.

Goldie Smith-Byrd, Ph.D.

Wake Forest School of Medicine

Jennifer J. Manly, Ph.D.

Columbia University.

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

Maria Glymour,  ScD, M.S.

University of California, San Francisco

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

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

Stephanie Mohl.

American Stroke Association

American Heart Association (AHA)

Steven H. Woolf, M.D., M.P.H.

Virginia Commonwealth University

Wally R. Smith, M.D.

Virginia Commonwealth University (VCU)