Data Integration in Learning Health Care Systems for Traumatic Brain Injury

Traumatic brain injuries (TBI) affect millions of Americans each year, causing symptoms that can be debilitating and long-lasting and resulting in physical, cognitive, emotional, and financial ramifications. The complexity and heterogeneity of TBI make it challenging to target the right interventions to the right patient at the right time. For those who do receive care, unlinked health records, fragmented care delivery, and gaps in medical surveillance means many questions remain unanswered about TBI prevalence, comorbidities, adverse outcome risk factors, and long-term outcomes. To help address this challenge, learning health care systems that bidirectionally exchange data and insights across clinical research, care services, and public health have been identified as key to improving patient outcomes. To help move the field forward, the National Academies Forum on Traumatic Brain Injury hosted a public workshop to explore the role of learning health systems in advancing TBI research and care. This Proceedings of a Workshop summarizes discussions and key messages from the workshop. Table of Contents Front Matter 1 Introduction 2 Lived Experiences 3 The Learning Health System 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 6 Data Capture, Surveillance, and Supporting Long-Term Care Needs 7 Using Learning Health Care Systems to Combat Inequitable Outcomes in Traumatic Brain Injury Appendix A: References Appendix B: Workshop Statement of Task Appendix C: Workshop Agenda Appendix D: Planning Committee, Speaker, and Moderator Biographies