Proceedings of a Workshop

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This activity was supported by contracts and grants between the National Academy of Sciences and Abbott Laboratories; AARP; Brain Scope, Inc.; Department of Defense (contract W81XWH22C0033); Department of Veterans Affairs (contract 36C24E22P0005); National Highway Traffic Safety Administration; National Institute on Disability, Independent Living, and Rehabilitation Research (contract 140D0423C0099 through the Department of the Interior); National Institutes of Health (contract HHSN263201800029I, task order 75N98022F00001); Neurotrauma Sciences; American Academy of Nursing; American Academy of Physical Medicine and Rehabilitation; American Association of Neurological Surgeons; American College of Surgeons; American Physical Therapy Association; Brain Injury Association of America; Concussion Legacy Foundation;; Emergency Nurses Association; National Association of Emergency Medical Technicians; National Association of State Head Injury Administrators; and National College Athletic Association. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.

International Standard Book Number-13: 978-0-309-71744-1
International Standard Book Number-10: 0-309-71744-2
Digital Object Identifier: https://doi.org/10.17226/27653

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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2024. Data integration in learning health care systems for traumatic brain injury: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/27653.

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PLANNING COMMITTEE¹

CORINNE PEEK-ASA (Chair), Vice Chancellor for Research and Professor of Epidemiology, University of California, San Diego

DAVID GOLDSTEIN, Senior Advisor, Office of the Assistant Secretary for Health, Department of Health and Human Services

ODETTE HARRIS, Paralyzed Veterans of America Professor of Spinal Cord Injury Medicine, Professor and Vice Chair, Diversity, Department of Neurosurgery, Stanford University School of Medicine, and Deputy Chief of Staff, Rehabilitation, Veterans Affairs Palo Alto Health Care System

MICHAEL HUERTA, Acting Deputy Director for Operations and Innovation, National Library of Medicine, National Institutes of Health

MONIQUE PAPPADIS, Associate Professor, Department of Population Health and Health Disparities, University of Texas Medical Branch at Galveston

NSINI UMOH, Program Director, Division of Neuroscience, National Institute of Neurological Disorders and Stroke, National Institutes of Health

REBECCAH WOLFKIEL, Executive Director, National Association of State Injury Administrators

KRISTINE YAFFE, Scola Endowed Chair, Vice Chair, and Professor, Departments of Psychiatry, Neurology, and Epidemiology, University of California, San Francisco

Health and Medicine Division Staff

KATHERINE BOWMAN, Senior Program Officer, Board on Health Sciences Policy

CHANEL MATNEY, Program Officer, Board on Health Sciences Policy

GAYATRI SOMAIYA, Senior Program Assistant, Board on Health Sciences Policy

CLARE STROUD, Senior Director, Board on Health Sciences Policy

Consultants

TAMARA HAAG, Science Writer, Doxastic

ANNA NICHOLSON, Founder and Lead Writer, Doxastic

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¹ The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.

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FORUM ON TRAUMATIC BRAIN INJURY¹

DONALD BERWICK (Cochair), Institute for Healthcare Improvement

CORINNE PEEK-ASA (Cochair), University of California, San Diego

JOE BONNER, Eunice Kennedy Shriver National Institute of Child Health and Human Development

JOE BRENNAN, Avalon Action Alliance

JAVIER CÁRDENAS, West Virginia University and American Academy of Neurology

JOHN CORRIGAN, Ohio State University and Brain Injury Association of America

JILL DAUGHERTY, Centers for Disease Control and Prevention

RAMON DIAZ-ARRASTIA, University of Pennsylvania Perelman School of Medicine

E. WESLEY ELY, Vanderbilt University Medical Center

BRUCE EVANS, Upper Pine River Fire Protection District and National Association of Emergency Medical Technicians

JONATHAN FISHER, American College of Emergency Physicians

STEVEN FLANAGAN, New York University Grossman School of Medicine and American Academy of Physical Medicine and Rehabilitation

BRIAN HAINLINE, National Collegiate Athletic Association

ODETTE HARRIS, Stanford University School of Medicine and VA Palo Alto Health Care System

RICHARD HODES, National Institute on Aging

STUART HOFFMAN, Department of Veterans Affairs

JAMES KELLY, University of Colorado Anschutz Medical Campus

FREDERICK KORLEY, University of Michigan

WALTER KOROSHETZ, National Institute of Neurological Disorders and Stroke

KATHY LEE, Department of Defense

RACHEL LAZARUS, AARP

D. CARL LONG, NeuroTrama Sciences, LLC

TARA JO MANAL, American Physical Therapy Association

GEOFFREY MANLEY, University of California, San Francisco, and Zuckerberg San Francisco General Hospital

LUCA MARINELLI, GE Research

CHRISTINA L. MASTER, University of Pennsylvania Perelman School of Medicine and Children’s Hospital of Philadelphia

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¹ The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.

BETH MCQUISTON, Abbott Laboratories

CATE MILLER, National Institute on Disability, Independent Living, and Rehabilitation Research

CHRIS NOWINSKI, Concussion Legacy Foundation

KAREN O’CONNELL, Northern Kentucky University School of Nursing and Emergency Nurses Association

TESSIE OCTOBER, Eunice Kennedy Shriver National Institute of Child Health and Human Development

DAVID OKONKWO, University of Pittsburgh School of Medicine

TOLU O. OYESANYA, Duke University School of Nursing

MAYUR B. PATEL, Vanderbilt University Medical Center and American College of Surgeons Committee on Trauma

LESLIE PRICHEP, BrainScope Company, Inc.

TERRY RAUCH, Department of Defense

JOEL SCHOLTEN, Department of Veterans Affairs

SHELLY TIMMONS, Indiana University School of Medicine and American Association of Neurological Surgeons

GAMUNU WIJETUNGE, National Highway Traffic Safety Administration

REBECCAH WOLFKIEL, National Association of State Head Injury Administrators

KRISTINE YAFFE, University of California, San Francisco

Forum Staff

KATHERINE BOWMAN, Forum Director

CHANEL MATNEY, Program Officer

GAYATRI SOMAIYA, Senior Program Assistant

CHRISTIE BELL, Finance Business Partner

CLARE STROUD, Senior Director, Board on Health Sciences Policy

Reviewers

This Proceedings of a Workshop was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.

We thank the following individuals for their review of this proceedings:

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings, nor did they see the final draft before its release. The review of this proceedings was overseen by CHRISTOPHER FORREST, Children’s Hospital of Philadelphia. He was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies. We also thank staff member MEREDITH YOUNG for reading and providing helpful comments on this manuscript.

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Contents

ACRONYMS AND ABBREVIATIONS

1 INTRODUCTION

Integrating the Learning Health System Concept and the Traumatic Brain Injury Road Map

Workshop Objectives

Organization of the Proceedings of the Workshop

2 LIVED EXPERIENCES

The Effect of Data Fragmentation on the Experience of Seeking and Receiving Care

Discussion

3 THE LEARNING HEALTH SYSTEM

Learning Health Care Systems

Discussion

4 USE OF LEARNING HEALTH CARE SYSTEMS TO IMPROVE CARE FOR TRAUMATIC BRAIN INJURY

Perspectives Panel

Discussion

5 EXAMPLES OF LEARNING HEALTH CARE SYSTEMS IN TRAUMATIC BRAIN INJURY

CARE4TBI: Comparing Treatment Approaches to Promote Inpatient Rehabilitation Effectiveness for Traumatic Brain Injury

TRACK-TBI Network and NINDS Common Data Elements

Traumatic Brain Injury Data and Learning Systems

Discussion

6 DATA CAPTURE, SURVEILLANCE, AND SUPPORTING LONG-TERM CARE NEEDS

Traumatic Brain Injury Surveillance at CDC

Developing Learning Health Systems to Support Long-Term Care Needs

Learning Health Systems for Traumatic Brain Injury in the VA

Discussion

7 USING LEARNING HEALTH CARE SYSTEMS TO COMBAT INEQUITABLE OUTCOMES IN TRAUMATIC BRAIN INJURY

Meeting Client Needs and Enhancing Community Capacity

Discussion

Workshop Wrap-Up

APPENDIXES

A References

B Workshop Statement of Task

C Workshop Agenda

D Planning Committee, Speaker, and Moderator Biographies

Box and Figures

BOX

3-1 Applying Learning Health System Principles in Two Areas

FIGURES

1-1 Stages of a care journey after TBI

3-1 Core principles of a learning health system

5-1 TRACK-TBI LHS scorecard

5-2 DoD traumatic brain injury totals as of May 9, 2023

6-1 Examples of how the Department of Veterans Affairs is using research infrastructure and integration with clinical care to support better outcomes for veterans with TBI

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Acronyms and Abbreviations

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