Conclusion: TBI care in the United States often fails to meet the needs of individuals, families, and communities affected by this condition. TBI is an ongoing condition that poses significant burdens over time, including substantial financial and social costs. For the most part, the nation has no mechanism in place for long-term follow-up and care of adults or children with TBI. The results of this gap include needless death, squandered human potential, family stress, and soaring social costs. Because of this gap, the true morbidity, mortality, and cost attributable to TBI, though undoubtedly vast, are unknown.

Recommendation 1. Create and implement an updated classification system for TBI. The current clinical classification scheme for TBI should be updated to be more accurate and informative for care and research:

1. The National Institutes of Health (NIH) should convene a TBI Classification Workgroup to review data from recent large-scale clinical studies and determine which elements should be incorporated into a more descriptive, evidence-based, and precise classification system for clinical care and research. In this effort, NIH should engage professional communities that routinely diagnose and classify TBI.

2. Relevant professional societies, including but not limited to those in emergency medicine, trauma care, and rehabilitation, should advise and train clinicians caring for people with TBI to classify patients based on their actual Glasgow Coma Scale (GCS) sum score (e.g., GCS 14) rather than the inaccurate and misleading three-category shorthand mild, moderate, or severe. Optimally, clinicians should also use results from neuroimaging and blood-based biomarkers, when available and clinically indicated, to classify patients. Clinicians should update the TBI classification for each patient as the person’s condition evolves.

Recommendation 2. Integrate acute and long-term person- and family-centered management of TBI. All people with TBI should have reliable and timely access to integrated, multidisciplinary, and specialized care to address physical, cognitive, and behavioral sequelae of TBI and comorbidities that influence quality of life.

1. Relevant professional societies should encourage clinicians to recommend that all patients at discharge from inpatient and outpatient acute care settings have an opportunity for follow-up with a clinician experienced in managing TBI. Guidance to clinicians should also emphasize the need to connect patients and family caregivers with care navigation resources as needed.
2. In their intake processes, health care and social services organizations should be aware of lifetime TBI exposure so they can identify those needing accommodations, as well as those at increased risk for TBI-related symptoms or declining trajectories in health and function. These organizations should also give providers guidance on practical strategies and accommodations that can help patients and families cope with TBI-related symptoms, and on resources that can increase reliable and timely access to and appropriateness of care for persons with TBI.

3. Organizations that oversee or provide long-term care should consider the needs of families and caregivers for education and support as key components of long-term care plans.

Recommendation 3. Reduce unwarranted variability and gaps in administrative and clinical care guidance to ensure high-quality care for TBI. The federal agencies that lead the development of clinical practice guidelines for TBI, including the Department of Veterans Affairs, the Department of Defense, the Agency for Healthcare Research and Quality, and the Centers for Disease Control and Prevention, should convene at regular intervals an expert panel to undertake the actions below in collaboration with clinical and patient community stakeholders. The Centers for Medicare & Medicaid Services (CMS) should be engaged in this effort to ensure alignment of coverage with clinical guidelines:

1. Survey the landscape of existing clinical care guidelines for all elements of TBI care, during all phases of care, and involving all salient specialties. Synthesize best current clinical practice and evidence to develop consensus-based guidelines where evidence is currently limited, using rigorous methods for such consensus processes. Guidelines should be sensitive to local contexts and potential sources of inequity, such as race/ethnicity, rurality, and limited access to health care resources.
2. Identify and resolve problems of inconsistency among current clinical care guidelines.
3. Identify guidelines and practices that are contraindicated by current evidence, and issue guidance on their deimplementation.
4. Identify common criteria for the inclusion of studies used to inform the development of guidelines and for how topics are covered for which limited evidence from randomized controlled trials or other rigorous study designs is available (see Recommendation 7).
5. Identify gaps in the evidence base informing current clinical care guidelines, and recommend research to develop the necessary evidence (see also gaps identified in the research agenda presented later).
6. Develop evidence-guided and consensus-based criteria for identifying patients who should be referred to inpatient and outpatient TBI rehabilitation (see Recommendation 5).
7. Identify avenues for emerging best practices to guide third-party coverage of care, regardless of payer source and type of medical facility.

Recommendation 4. Enhance awareness and identification of TBI by health care providers and the public. Education and awareness are essential for achieving high-quality care and improving outcomes, and are particularly important in the following areas:

1. Public awareness. The Centers for Disease Control and Prevention, working with organizations in TBI prevention, care, and rehabilitation and those that work with at-risk groups, should enhance efforts to raise awareness among the public on the context, causes, and long-term effects of TBI; the importance of follow-up; and resources that may be available to the person with TBI.
2. Professional awareness, education, and training. Education and training programs for health care professions should include information on the burden, risk factors, and signs and symptoms of TBI and should correct misconceptions about the condition. Materials should emphasize adherence to evidence-based guidelines where they exist to bring greater consistency to TBI care across the United States, while taking into account patient characteristics and preferences in order to provide personalized care. Guidance should also emphasize eliminating practices that are contraindicated by current evidence and reducing inequities in care and outcomes.
3. Patient and family empowerment. National- and state-level patient and family organizations should work with clinical communities in primary care, acute care, and rehabilitation to ensure that all TBI patients and families receive anticipatory guidance on expected symptoms and trajectory, steps to decrease the risk of delayed recovery, and available TBI resources.

Recommendation 5. Establish and reinforce local and regional integrated care delivery systems for TBI. The Secretary of Health and Human Services should work to establish geographically based, integrated care delivery systems for TBI, emphasizing the continuum of care across the acute, rehabilitation, and recovery phases and all severities. The effort should build on the nation’s success with regional trauma systems and incorporate practices and lessons learned from the Department of Defense (DoD) and the Department of Veterans Affairs (VA). Specifically:

1. The American College of Surgeons (ACS) and other trauma verification systems should incorporate comprehensive standards for TBI care in trauma center verification processes and data systems and as a national trauma system evolves. As part of this effort, ACS should expand efforts to foster communication between acute care and rehabilitation care providers and expand outreach on the signs and management of TBI to the public, first responders, and acute care providers.

2. Settings that provide TBI care across the post-acute rehabilitation continuum should meet standards for integrated, evidence-based, and individualized brain injury care, such as those required by the Commission on Accreditation of Rehabilitation Facilities for the Brain Injury Specialty. The Joint Commission should review and promulgate standards for high-quality TBI care in the broader spectrum of care settings that treat people with TBI, such as primary care, community hospitals, and concussion programs.
3. The Department of Health and Human Services and the Center for Medicare & Medicaid Innovation should support local and regional pilot demonstration projects to create prototype civilian care infrastructures focused on providing continuity of care for follow-up, rehabilitation, and longer-term care and recovery from TBI. The demonstration projects should document best practices and effects on patient outcomes, and identify the components of a chronic care management model that are most effective for persons with TBI. Prototype systems should address the needs of TBI across the spectrum of severity and venues of care, including community-based services.
4. The Centers for Medicare & Medicaid Services (CMS) and commercial health care insurers should align coverage for TBI care with clinical guidelines to ensure equity in access to, affordability of, and quality of care. For example, payers should use criteria identified under Recommendation 3 when authorizing inpatient and outpatient rehabilitation services, including for long-term TBI sequelae. CMS, the VA, and DoD should test alternative benefit structures for TBI rehabilitation care instead of relying on the current time-based metric (e.g., the “3-hour rule”) or preset benefits.

Recommendation 6. Integrate the TBI system of care and TBI research into a learning health care system. Reducing the burden of TBI will require a learning system capable of continual improvement. Important elements are thorough surveillance, standardized and longitudinal patient information, and accessibility of data. The Secretary of Health and Human Services (HHS) should therefore work to establish an integrated TBI data system, taking the following actions:

1. Conduct thorough surveillance. The Centers for Disease Control and Prevention should expand efforts to track TBI mortality, morbidity, and long-term outcomes more completely and accurately, including by adding validated, standardized TBI questions to population-based and weighted surveys and working to ensure consistency of information across states and surveys. The Agency for Healthcare Research and Quality should modify and expand the Healthcare Cost and Utilization Project to enable improved analysis of TBI care patterns, costs, and outcomes, both acute and long-term.
2. Standardize the capture of patient-level data. HHS should work with health care systems and electronic health record vendors to bring data infrastructure into line

with the state of the science by investing in and developing the ability to capture high-quality, TBI-relevant data in medical records. This data infrastructure will help in identifying causal factors and longitudinal outcomes, enabling comparative effectiveness, implementation, and translation studies across health care systems.

3. Emphasize longitudinal data, and integrate information across the continuum of care. HHS should work with the owners of national and regional TBI registries and databanks to crosslink patient-level data across sites and through time. In addition, data systems should collect clinical information in alignment with the refined TBI classification system proposed in Recommendation 1.

Recommendation 7. Improve the quality and expand the range of TBI studies and study designs. TBI research and investment by the National Institutes of Health, the Department of Defense, the Department of Veterans Affairs, and private-sector funders should be commensurate with the public health burden of the condition. The research agenda proposed herein identifies eight areas for further progress and additional attention. When identifying research priorities and requests for applications, the above funders should take the following actions:

1. Significantly expand financial support and research efforts to address the priorities identified in the research agenda.
2. Establish translational research and implementation science centers to undertake collaborative efforts toward improved standardization and clinical care for TBI throughout the continuum of care. These centers should use insights from implementation science to enable effective translation of study results from the laboratory to clinical trials and from clinical trials to practice.
3. Encourage multidisciplinary and multistakeholder research efforts to strengthen the evidence base informing care. These efforts should:
   1. Use the TBI classification system called for in Recommendation 1 to better stratify participants in clinical trials of novel interventions for TBI.

2. Engage patient and family voices early in study design by using stakeholder engagement (i.e., community-based participatory research) to identify unmet needs and refine research questions.
3. Recruit diverse study participants to ensure that research is broadly representative of the people who experience TBI.
4. Use all forms of rigorous study designs when appropriate to answer research questions. Study methods should be eclectic and adaptive, and should include not only randomized controlled trials for efficacy but also pragmatic trials, adaptive designs, comparative effectiveness trials, observational studies (including those using statistical control for causal inference), and mixed methods, as appropriate to the research questions.
5. Engage laboratory scientists and clinicians to ensure better research translation, including rigorous parallels across animal and human injury models, therapeutic targets, comorbidities, and study design outcome metrics and endpoints.

Conclusion: The United States lacks a comprehensive framework for addressing TBI. A barrier to dramatic improvement in TBI care and research is the absence of a strategic framework and a lead agency or organization with a systemic view, responsibility for articulating goals and overseeing progress, the capacity to foster change, and the ability to convene the many stakeholders required to address the necessary multiple lines of effort. Absent a leadership entity, no one owns the problem, and major progress is unlikely.

Recommendation 8. Create and promulgate a national framework and implementation plan for improving TBI care. The Secretary of Health and Human Services (HHS) should, under the aegis of the Assistant Secretary for Health, create, promulgate, and curate a strategic national framework and implementation plan for improving TBI care:

1. To this end, the Secretary of HHS should establish, for a period of 10 years, a national Traumatic Brain Injury Task Force as a successor to the National Research Action Plan. The TBI Task Force should move beyond an emphasis solely on research coordination to encompass a focus on research implementation and application of the evidence in support of better treatment and systems of care delivery, engaging an expanded group of federal, private-sector, and philanthropic partners. It should enlist and help coordinate TBI-related care improvements among HHS components (such as the Centers for Medicare & Medicaid Services, the National Institutes of Health, the Centers for Disease Control and Prevention, the Administration for Community Living, the Agency for Healthcare Research and Quality, and the Health Resources and Services Administration, among others) and should include participation from other relevant departments, such as the Department of Veterans Affairs, the Department of Defense, the Social Security Administration, and the Department of Transportation.
2. The TBI Task Force’s first actions should be to develop a strategic framework addressing the issues reflected in the committee’s recommendations and within 2 years, to release a specific implementation plan to guide and coordinate efforts within that framework. This plan should be curated and updated over time.
3. The TBI Task Force should engage a multistakeholder public–private coalition to continually advance and accelerate implementation of the national framework and plan. Stakeholders in this coalition should include, but not be limited to, the federal agencies that provide funding for TBI research and clinical care, relevant patient and family advocacy organizations, Veterans service organizations, relevant professional societies, youth and adult sports associations, health payment organizations, philanthropic foundations, and companies developing new tools and treatments for TBI.