NINDS Health Disparities and Inequities in Neurological Disorders (HEADWAY) Workshop

September 22, 2021 - September 24, 2021

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HEADWAY banner

 

The National Institute of Neurological Disorders and Stroke (NINDS) is committed to reducing the disproportionate burden of neurological disease borne by underserved groups of society, including race/ethnic, sex/gender minorities, rural, disabled, and socioeconomically disadvantaged populations, by funding a spectrum of research from basic through implementation science, and training the next generation of health disparities investigators.

In 2020, the NINDS Office of Global Health and Health Disparities within the Division of Clinical Research, in collaboration with the Office of Science Policy and Planning, embarked on a strategic planning process to address health disparities and inequities in neurological disorders through research.  As a culmination of the strategic planning process, the NINDS hosted the Health Disparities and Inequities in Neurological Disorders Workshop (HEADWAY).

The goal of the HEADWAY workshop aimed to identify evidence-based interventions that are feasible and widely scalable, to diminish disparities and inequities in neurological disorders.  This workshop assembled subject matter experts in various disciplines from clinical and health services researchers, to implementation and behavioral scientists, along with community stakeholders and patient advocates. Findings and recommendations from the workshop and strategic planning process will be placed on the NINDS website and used as resources for setting priorities and developing initiatives over the next 5 – 10 years.

The three-day HEADWAY Workshop information, recordings, and resources were archived and are available to view here:

Sponsored By: National Institute of Neurological Disorders and Stroke (NINDS)

Session(s) Meeting Dates Location

Session I and II
     (Day 1)

Wednesday, September 22, 2021
12:00 p.m. – 5:00 p.m.

NIH Videocast

Session III and IV
       (Day 2)

Thursday, September 23, 2021
12:00 p.m. – 5:00 p.m.

NIH Videocast

Break-out group discussions
       (Day 3)

 Friday, September 24, 2021
 12:00 p.m. – 5:00 p.m. ET

Zoom Breakout rooms
     (Not Recorded)

 

Speakers 

Session Presenters and Bios(pdf, 514 KB)

Agenda

Session I and II  (Day 1) - Wednesday, September 22, 2021 | 12:00 p.m. - 5:00 p.m. ET
Time Agenda Item
12:00 – 12:15 pm

Welcome and Opening Remarks
Dr. Richard Benson
Director, Office of Global Health and Health Disparities 

12:15 – 12:30 pm

NIH Vision for Health Disparities and Inequities in Health Care and Minority Health
Dr. Eliseo J. Pérez-Stable
Director, National Institutes of Health (NIH), National Institute on Minority Health and Health Disparities (NIMHD)     
       

12:30 –
1:00 pm

NINDS’ dedication to the Elimination of Health Disparities and Inequities in Neurological Disorders
Dr. Walter Koroshetz
Director, National Institutes of Health (NIH), National Institute of Neurological Disorders and Stroke (NINDS)

SESSION I

         [ Economic, Epidemiological, and Interventional Analyses ]


Moderator: Dr. Karen C. Johnston
Harrison Distinguished Professor of Neurology and Associate Vice President for Clinical and Translational Research at the University of Virginia

1:00 –
1:30 pm

Excess Mortality in Neurological Disorders
Dr. Steve Woolf
Director Emeritus, Center on Society and Health at Virginia Commonwealth University
Professor, Family Medicine and Population Health
C. Kenneth and Dianne Wright Distinguished Chair, Population Health and Health Equity      

1:30 –
2:00 pm

REGARDS – Health Disparities in Stroke and the Role of Primary Prevention
 Dr. George Howard
Distinguished Professor, Biostatistics at the University of Alabama at Birmingham (UAB)

2:00 –
2:15 pm
BREAK
2:15 –
2:45 pm

Defining Health Disparities in Neurological Disorders  and Early Clinical Studies
Dr. Ralph L. Sacco
Chairman of Neurology, Olemberg Family Chair in Neurological Disorders,
Miller Professor of Neurology, Public Health Sciences, Human Genetics, and Neurosurgery
Executive Director, Evelyn F. McKnight Brain Institute at the Miller School of Medicine, University of Miami
Chief, Neurology Service at Jackson Memorial Hospital

2:45 –
3:15 pm

Disparities in Neurological Outpatient Follow-up
 Dr. Nicte Mejia
 Assistant Professor of Neurology, Harvard Medical School
Assistant Neurologist, Massachusetts General Hospital     

3:15 –
3:45 pm
Social Determinants of Health – Neurological Interventions
Dr. Amy Towfighi
Associate Professor of Neurology and Preventive Medicine (Clinical Scholar) at the University of Southern California
3:45 –
3:55 pm
BREAK
SESSION II

       [ Collaborative Research Teams – NIH ]


 Moderator: Dr. Edwin Trevathan
 Pediatric Neurologist and an Epidemiologist, Amos Christie Chair in Global Health
Professor, Pediatrics and Neurology
Director, Vanderbilt Institute for Global Health at Vanderbilt University School of Medicine

3:55 –
4:10 pm
The National Institute of Neurological Disorders and Stroke’s (NINDS) Mind Your Risks Campaign
 Ms. Barbara McMakin
 Chief, NINDS Media Relations, Office of Neuroscience Communications & Engagement (ONCE)
4:10 –
4:35 pm
The National Cancer Institute’s (NCI) Comprehensive Partnerships to Advance Cancer Health Equity (CPACHE)
 Dr. H. Nelson Aguila
Deputy Director, National Cancer Institute’s (NCI), Center to Reduce Cancer Health Disparities (CRCHD)

4:35 –
5:00 pm

The National Heart, Lung, and Blood Institute’s (NHLBI) Disparities Elimination through Coordinated Interventions to Prevent and Control Heart and Lung Disease Risk (DECIPHeR) Program
 Dr. Geroge A. Mensah
Clinician-scientist and Director, Center for Translation Research and Implementation Science at the National Heart, Lung, and Blood Institute (NHLBI), National Institutes of Health (NIH)
5:00 pm Adjourn
 

 

Session III and IV  (Day 2) - Thursday, September 23, 2021 | 12:00 p.m. - 5:00 p.m. ET
Time Agenda Item
12:00 –
12:05 pm
Welcome
Dr. Richard Benson
Director, Office of Global Health and Health Disparities 
SPECIAL SESSION

12:05 –
2:35 pm

The Science of Structural Racism
 

Dr. David R. Williams
Florence and Laura Norman Professor of Public Health and Chair, Department of Social and Behavioral Sciences, at Harvard’s T.H. Chan School of Public Health           

SESSION III

[ Public Private Partnerships (PPPs) to Address Health Disparities – Collaborative Research Teams ]


Moderator: Dr. Karen C. Johnston   
Harrison Distinguished Professor of Neurology and Associate Vice President, Clinical and Translational Research at the University of Virginia (UVA)  

12:35 –
1:05 pm

PPPs: Patient-Centered Outcomes Research Institute (PCORI)
Dr. Steve Clauser   
Director of the Healthcare Delivery and Disparities Research Program at the Patient-Centered Outcomes Research Institute (PCORI) 

1:05 –
1:35 pm

PPPs: The Johns Hopkins University and The Mayo Clinic
Dr. Lisa Cooper
James F. Fries Professor of Medicine and a Bloomberg Distinguished Professor in Health Equity at Johns Hopkins University Schools of Medicine, Nursing, and School of Public Health

Dr. LaPrincess Brewer
Cardiologist and Assistant Professor of Medicine within the Mayo Clinic Department of Cardiovascular Medicine in Rochester, MN      

1:35 –
2:05 pm

PPPs: The Role of Pharma – Genentech
 Dr. Jeffrey .M. Venstrom
Physician-scientist with expertise in oncology, hematology, and drug/diagnostic development at Roche / Genentech

2:05 –
2:20 pm
BREAK
SESSION IV

        [ Targeted Interventions ]


Moderator: Dr. Edwin Trevathan
Pediatric Neurologist and an Epidemiologist, Amos Christie Chair in Global Health
Professor, Pediatrics and Neurology
Director, Vanderbilt Institute for Global Health at Vanderbilt University School of Medicine

2:20 –
2:50 pm

Health Disparities Implementation Science
 Dr. Rajesh Vedanthan
 Director, Section for Global Health in the Department of Population Health at the New York University School of Medicine    

2:50 –
3:20 pm

Health Disparities Education and Training
Dr. Bruce Ovbiagele
Professor of Neurology and Associate Dean at the University of California, San Francisco
Chief of Staff, San Francisco Veterans Affairs Health Care System

3:20 –
3:50 pm
Community Engagement and  Clinical Interventions
Dr. Bernadette Boden-Albala
Director and Founding Dean, Program in Public Health, Susan & Henry Samueli College of Health Sciences at the University of California, Irvine
Professor, Department of Health, Society and Behavior and the Department of Neurology in the School of Medicine 
3:50 –
4:00 pm

Break

4:00 –
4:30 pm

Adverse Childhood Events (ACES) and Lifetime Impact
Dr. Rachel P. Berger
Professor of Pediatrics and Clinical and Translational Science at the University of Pittsburgh
Chief, Division of Child Advocacy at UPMC Children’s Hospital of Pittsburgh
Director of child abuse research, Safar Center for Resuscitation Research, University of Pittsburgh

4:30 –
5:00 pm
Disparities in Neurological Care/Service for Sexual/Gender Minorities
 Dr. Nicole Rosendale
 Assistant Professor of Neurology at the University of California San Francisco (UCSF)
5:00 pm Adjourn

 

Breakout Sessions (Day 3) - Friday, September 24, 2021 | 12:00 p.m. - 5:00 p.m. ET
Time Agenda Item
12:00 –
12:10 pm
       Welcome
        Dr. Richard Benson
       Director, Office of Global Health and Health Disparities 

12:10 –
2:10 pm

       Break-out Group Discussions:

       Group (A): Strategies for Interventions to Address Neurological
                          Health Inequities and Community Engagement

       Group (B): Cross-cutting Themes and Social Determinants of Health:
                          Impact on neurological health outcomes and potential
                         interventions

       Group (C): Pediatrics and Adverse Childhood Events (ACEs)

       Group (D): Communication of Scientific Information to the lay Public,
                           Researchers, and Health Professionals

       Group (E): Health Disparities Research & Training       

12:10 –
2:40 pm

       BREAK

2:40 –
4:45 pm

       Presentation of Break-out Group Summaries


       Moderators:
       Dr. Jennifer Manly
       Professor of Neuropsychology in the Department of Neurology 
       Columbia University Irving Medical Center

 

       Dr. Edwin Trevathan
       

2:40 –
3:05 pm

       Group (A): Strategies for Interventions to Address Neurological
                            Health Inequities and Community Engagement  

3:05 –
3:30 pm

       Group (B): Cross-cutting Themes and Social Determinants of Health:
                           Impact on neurological health outcomes and potential
                           interventions

3:30 –
3:55 pm
       Group (C): Pediatrics and Adverse Childhood Events (ACEs)
3:55 –
4:20 pm

       Group (D): Communication of Scientific Information to the lay Public,
                            Researchers, and Health Professionals

4:20 –
4:45 pm

       Group (E): Health Disparities Research & Training

4:45 –
5:00 pm

       Closing Remarks and Next Steps
       Dr. Richard Benson

5:00 pm        Adjourn

 

Contact

Contact: Ms. Naomi Booker
Contact Email: Naomi.booker@nih.gov

Join and Connect with us! Subscribe to the NINDS-OGHHD Listserv

 

 

 

Related Resources


NINDS Director’s Message - Making HEADWAY on Inequities in Neurological Health

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.

NINDS Office of Global Health and Health Disparities

The Office of Global Health and Health Disparities (OGHHD) within the Division of Clinical Research, leads the coordination and development of programs and initiatives that foster global research and research on health disparities in neurological disorders and stroke.

NINDS Office of Programs to Enhance Neuroscience Diversity

The mission of the Office of Programs to Enhance Neuroscience Workforce Diversity (OPEN) is to represent NINDS at all levels of NIH in matters pertaining to NINDS workforce diversity.  OPEN develops and implements individual and institutional funding opportunities while working across the NINDS scientific portfolio to promote inclusion.

Mind Your Risks

Mind Your Risks® is a public health campaign that educates people with, or at risk of, high blood pressure about the importance of taking charge of their health. Controlling high blood pressure can help reduce the risk of having a stroke and developing dementia later in life.

NIH Health Equity Research

NIH is committed to:

  • Improving minority health and reducing health disparities
  • Removing the barriers to advancing health disparities research

 

NINDS Scientific Resources

 

NINDS Common Data Elements (CDEs)

The CDE Catalog is a directory of the available NINDS CDEs. Users can search the Catalog to isolate a subset of the CDEs (e.g., all stroke-specific CDEs, etc.), and to view and download details about the CDEs.  The NINDS strongly encourages researchers who receive funding from the Institute to ensure their data collection is compatible with these common data elements (CDEs).

The Federal Interagency Traumatic Brain Injury Research (FITBIR) Informatics System

The National Institutes of Health (NIH), in partnership with the Department of Defense (DoD), is building a secure, centralized informatics system (database) for traumatic brain injury (TBI) research. The FITBIR Informatics System is an extensible, scalable informatics platform for TBI-relevant data (medical imaging, clinical assessment, environmental and behavioral history, etc.) and for all data types (text, numeric, image, time series, etc.). FITBIR was developed to share data across the entire TBI research field and to facilitate collaboration between laboratories, as well as interconnectivity with other informatics platforms.

The NINDS Biospecimen and Data Repository (BioSEND)

BioSEND is a biorepository operated by Indiana University with funding from NINDS. It currently banks a variety of biospecimens including DNA, plasma, serum, RNA, CSF, whole blood, and saliva from a number of clinical studies within the NINDS mission.

The NINDS Human Cell and Data Repository

The NINDS is committed to providing well-characterized cell sources to both academic and industry investigators to advance the study of neurological disorders.  Cell sources currently include fibroblasts and/or induced pluripotent stem cells for Alzheimer’s Disease, Amyotrophic Lateral Sclerosis (ALS), Ataxia-telangiectasia, Frontotemporal Lobar Degeneration (FTD), Huntington’s Disease, Parkinson’s Disease, and healthy controls.  Cell sources, including isogenic cell lines for current and new diseases covered by the NINDS, will be added over the next several years.  The NINDS Human Cell and Data Repository (NHCDR) provides new tools for analytics, searching, and ordering for all components of the repository.

The NINDS Human Genetics Resource Center

The NINDS Human Genetics Resource Center banks samples from subjects with cerebrovascular disease, dystonia, epilepsy, motor neuron disease, Parkinsonism and Tourette Syndrome, as well as population controls.

NIH NeuroBioBank

The NIH-funded NeuroBioBank (NBB) was established in September 2013 as a national resource for investigators utilizing human post-mortem brain tissue and related biospecimens for their research to understand conditions of the nervous system.