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
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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
Integrating the Learning Health System Concept and the Traumatic Brain Injury Road Map
Organization of the Proceedings of the Workshop
The Effect of Data Fragmentation on the Experience of Seeking and Receiving Care
4 USE OF LEARNING HEALTH CARE SYSTEMS TO IMPROVE CARE FOR TRAUMATIC BRAIN INJURY
5 EXAMPLES OF LEARNING HEALTH CARE SYSTEMS IN TRAUMATIC BRAIN INJURY
TRACK-TBI Network and NINDS Common Data Elements
Traumatic Brain Injury Data and Learning Systems
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
7 USING LEARNING HEALTH CARE SYSTEMS TO COMBAT INEQUITABLE OUTCOMES IN TRAUMATIC BRAIN INJURY
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Acronyms and Abbreviations
ACL | Administration on Community Living |
AHRQ | Agency for Healthcare Research and Quality |
AI | artificial intelligence |
BARDA | Biomedical Advanced Research and Development Authority |
BIA-NE | Brain Injury Alliance of Nebraska |
BISC | Brain Injury Services Coordination |
BRFSS | Behavioral Risk Factor Surveillance System |
CARE4TBI | Comparing Treatment Approaches to Promote Inpatient Rehabilitation Effectiveness for TBI |
CDC | Centers for Disease Control and Prevention |
CENTER-TBI | Collaborative European Neurotrauma Effectiveness Research in TBI |
CMMI | Center for Medicare and Medicaid Innovation |
CMS | Centers for Medicare and Medicaid Services |
CT | computerized tomography |
CVD | cardiovascular disease |
DARS | Department for Aging and Rehabilitative Services |
DoD | Department of Defense |
ED | emergency department |
EHR | electronic health record |
EMS | emergency medical services |
FDA | U.S. Food and Drug Administration |
GCS | Glasgow Coma Scale |
GOSE | Glasgow Outcome Scale-Extended |
ICD | International Classification of Diseases |
IOM | Institute of Medicine |
IT | information technology |
LHS | learning health system |
LIMBIC-CENC | Long-term Impact of Military-relevant Brain Injury Consortium—Chronic Effects of Neurotrauma Consortium |
MOS | military occupational specialty |
NAM | National Academy of Medicine |
NASHIA | National Association of State Head Injury Administrators |
NCSS | National Concussion Surveillance System |
NIDILRR | National Institute on Disability, Independent Living, and Rehabilitation Research |
NINDS | National Institute of Neurological Disorders and Stroke |
NYU | New York University |
OBISS | Online Brain Injury Screening and Support System |
OR | operating room |
OSU | Ohio State University |
OSU TBI-ID | Ohio State University TBI Identification Method |
PCP | primary care physician |
PE | pulmonary emboli |
PSC | Polytrauma Systems of Care |
PTSD | post-traumatic stress disorder |
RCT | randomized controlled trial |
TBI | traumatic brain injury |
TBICoE | Traumatic Brain Injury Center of Excellence |
TED | TBI Endpoint Development |
TRACK-TBI | Transforming Research and Clinical Knowledge in Traumatic Brain Injury |
TRACTS | Translational Research Center for TBI and Stress Disorders |
VA | Department of Veterans Affairs |
VCU | Virginia Commonwealth University |
VDH | Virginia Department of Health |
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