6

Integrating Insights to Catalyze Change

The final session of the workshop featured a discussion integrating key messages and lessons from the prior sessions into approaches addressing gaps in follow-up care during the first months after a traumatic brain injury (TBI). Michael McCrea, Medical College of Wisconsin, served as moderator and opened the discussion by sharing his view of the importance of the neuro-bio-psycho-socio-ecological model of TBI care featured in the workshop and in the National Academies’ recent TBI report (NASEM, 2022). Such a model considers not only the medical nature of a person’s brain injury, but also individualized needs and goals, social determinants of health, and the potential effects of factors such as psychological trauma. He also highlighted how the workshop’s presentations and discussions reflected an understanding of key components involved in high-quality TBI followup systems, encouraging the community working to improve post-TBI care not to ignore or postpone solutions that could address 80 percent of needs while seeking a perfect solution that meets all needs. McCrea then invited all workshop speakers and participants to share their take-away thoughts and key messages from the event.

TBI DATA GAPS

Corinne Peek-Asa, vice chancellor for research, University of California San Diego, emphasized the importance of outcomes data in creating systemic and policy change for TBI care. She noted the need for longitudinal data to measure outcomes as well as data to better quantify TBI burden, incidence, and prevalence. McCrea remarked that data are also critical for developing improved understanding of the effectiveness of treatments, for generating payer support for the value of follow-up care after TBI, and for catalyzing ongoing performance improvement among providers. James Kelly, University of Colorado, agreed and noted that the development and selection of specific outcome metrics for TBI follow-up could be part of the agenda of a future forum meeting.

ACADEMIC AND COMMUNITY PARTNERSHIPS IN CHANGE EFFORTS

Flaura Winston, Children’s Hospital of Philadelphia, commented that academic institutions can increase their collaboration with community groups serving the TBI population by assisting with grant writing, data collection, and data analysis. Given the potential disconnection between academia and brain injury associations, McCrea echoed the call for greater academic support of community initiatives. Ramon Diaz-Arrastia, University of Pennsylvania, remarked that the Brain Attack Coalition’s influence on the creation of a stroke center certification demonstrates how academic groups can take part in motivating policy change and encouraged further action by the TBI community.

April Turner, Alabama Department of Rehabilitation Services, noted that the Alabama TBI system of care uses a task force to increase cross-stakeholder collaboration and that similar strategies could be used by others. A quarterly newsletter informs task force members of current activities and provides transparency; federal work groups create opportunities for state partners to collaborate, as well. Rebeccah Wolfkiel, National Association of State Head Injury Administrators, shared that her organization is available to help facilitate connections with state and local programs and the organization’s website can serve as a resource that lists brain injury community programs.

APPROACHES TO BUILDING COMPREHENSIVE TBI CARE

Noting the broad scope of improvements needed in post-TBI care raised during this workshop, David Brody, professor of neurology and chief science officer/chief innovation officer at the Center for Neuroscience and Regenerative Medicine, Uniformed Services University, asked how best to organize and prioritize initiatives. McCrea replied that the forum’s recently established Action Collaborative on TBI Care can serve as one vehicle to help advance these issues and that the Action Collaborative has prioritized several initial action areas through working groups focused on specific needs within the broader landscape. Geoffrey Manley, University of California San Francisco, added that the Action Collaborative adopted its initial focus on adults because 80 percent of TBI patients are aged 18 years or older, and thus improvements in postacute TBI care for this segment of the patient community could have a broad impact. In addition to the work of the Action Collaborative’s Clinical Practice Guidelines group, which is working to improve quality of life by identifying and disseminating guidance to manage the most common symptoms experienced after a TBI, he highlighted that the Action Collaborative seeks to foster the creation of

pilot post-TBI care sites across the country. Research, patient, and family/caregiver input is critical to inform the implementation and evolution of such pilot programs, Manley emphasized, and such pilots can develop an improved evidence base from which to scale efforts and broaden the populations served. The process of identifying care systems and settings that could form a pilot initiative and securing matching funds is already under way, Manley added.

Kathy Lee, Department of Defense (DoD), echoed the scope of the challenges in TBI follow-up care and the fact that attempting to address all potential changes simultaneously would be overwhelming. She emphasized the value and feasibility of developing a pilot demonstration project for adult, postacute TBI that could serve as a proof of concept, and that timed start and end points and specific goals can provide structure while the iterative nature of a demonstration project facilitates ongoing learning. Lee pointed to a proof-of-concept pilot program designed as part of the DoD’s Warfighter Brain Health Initiative as an example of the type of effort that could be undertaken,¹ noting that the DoD pilot features six specific tasks limited to a 3-year timeline. This program aims to clearly define the scope of the problem and generate data illustrating how brain health is a public health issue, she said, thereby demonstrating the need for such brain health programs to a broader set of stakeholders. Lee emphasized that such demonstration projects can be implemented in the shorter term and further refined and expanded over time, enabling progress on actionable tasks. Complementary policy change can be pursued by leveraging national channels such as the Congressional Brain Injury Task Force and the Brain Injury Association of America, she concluded.

John Corrigan, The Ohio State University, commented on the value of including a Medicaid managed care organization (MCO) in a future pilot for improved post-TBI care, given that one-fifth of TBI clinics in Ohio are funded by Medicaid MCOs. Furthermore, Medicaid diagnostic code data could be used to identify outcome trajectories of TBI patients who initially sought medical treatment but did not receive ongoing management. Such data could also inform analysis of the return on investment from changes to TBI follow-up care.

A participant asked about currently available evidence that indicates the effectiveness of interventions that are not yet widely implemented, encouraging providers to begin implementing such interventions in their practices and clinics as an early step toward broader change. Frederick Korley, University of Michigan, noted the role for pragmatic clinical trials

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¹ More information about the Warfighter Brain Health Initiative is available at https://media.defense.gov/2022/Aug/24/2003063181/-1/-1/0/DOD-WARFIGHTER-BRAIN-HEALTH-INITIATIVE-STRATEGY-AND-ACTION-PLAN.PDF (accessed July 13, 2023).

as a useful mechanism for gathering evidence on the effectiveness or lack of effectiveness of interventions addressing TBI and helping to advance practice standards.

Carl Long, chief executive officer, NeuroTrauma Sciences LLC, underscored the role of pharmaceutical companies and investment funds in medical innovation. He noted the potential value of inviting representatives from these groups to present to the forum on funding priorities and value propositions. Such a session could illustrate areas of overlapping interests between funders and investors and the TBI community and provide further insights on making effective value cases. McCrea remarked that often these stakeholders also use epidemiologists, data scientists, neuroscientists, and other experts on subjects relevant to TBI, adding to the value of engaging with them during future events.

TRAUMA AND EQUITY CONSIDERATIONS

Peek-Asa emphasized the importance of considering issues related to equity and trauma while aiming to enhance care provision after TBI. Head trauma often results from traumatic events such as active combat, violence, or car crashes involving deaths. Psychological trauma is linked to a cascade of biochemical sequelae that increases the risk of additional TBIs. Moreover, TBI causes biomechanical and biochemical responses. The effects of these responses and of social determinants of health influence recovery, she said, thus TBI systems of care need to better integrate this understanding into practice. McCrea agreed that both the literature and the experiences of providers, patients, and families demonstrate that a TBI care system cannot succeed without taking trauma and social determinants of health into account.

TBI DISCHARGE INSTRUCTIONS

A participant emphasized the pressing need for codified TBI discharge instructions that feel personalized and provide patients with a sense of agency and a hopeful path forward during their recovery. McCrea remarked on the variability among discharge instructions currently used by hospitals—even within the same health care system—and the lack of consistency in providing them to patients. Matthew Breiding, Centers for Disease Control and Prevention (CDC), commented that creating the content and aesthetic of such instructions is far easier than implementing automatic dissemination at discharge. He noted that many settings distribute instructions with low resolution and poor quality, indicating that photocopies are made from previous photocopies. Shifting from these old-fashioned methods to a universal system would be valuable, but it will be a substantial challenge. McCrea also

raised the issue of timing when providing post-TBI instructions to patients and families, and the need to consider the patient’s state of mind after injury. This speaks to the need for the Action Collaborative’s groups to coordinate with CDC and other experts in developing further high-quality, standardized resources and encouraging adoption of them, he said.

REHABILITATION CONSIDERATIONS

A participant commented on the challenge of inadequate insurance coverage for rehabilitation services after TBI, since some people may require years of services. Many TBI survivors also have trajectories that involve mental health issues that are not well identified or treated with current follow-up care. McCrea noted that once a patient is discharged from inpatient rehabilitation, insurance benefits generally limit coverage for both the quantity of visits and the time frame in which visits occur. Corrigan commented that some TBI patients recover and do well for a number of years, but later experience an interaction of aging and residual TBI effects that contribute to health failures at earlier ages than their peers. This interaction can create service needs years after the termination of initial post-TBI interventions. The longer-term consequences of TBI, the intersection of a prior TBI with subsequent aging, and the challenges of providing and covering the longer-term, multidisciplinary rehabilitation interventions needed by some TBI patients represents another area to consider for future forum meetings, he concluded.

ARTIFICIAL INTELLIGENCE CONSIDERATIONS

A participant spoke of the advantages and limitations of artificial intelligence (AI) as a potential resource for the TBI field, given the current lack of health system capacity to meet TBI needs and the large numbers of people who experience a TBI each year. For example, the use of algorithms in three- and four-dimensional cardiac imaging is reducing the time cardiology staff must dedicate to assessment, he said. He remarked that a similar approach might be applied to brain imaging. For instance, brain imaging may indicate that a TBI is isolated to the speech center in the left hemisphere of a patient’s brain, reducing the need for a full battery of diagnostic tests. AI informatics could potentially be used to target treatments to certain sets of vital signs or imaging. Similar to Poison Control, which identifies treatments for symptoms after a toxic chemical exposure, an AI-enabled resource could help direct physicians to those TBI interventions most likely to lead to a better outcome, based on the specific patient information.

Furthermore, he noted that car companies are developing technology to capture details of car crash events, additional data that could be trans-

mitted to an Emergency Medical Services (EMS) dispatch center and into an electronic patient reporting system to inform subsequent patient assessment. Using AI with imaging technology and other patient information to assess the characteristics of a TBI and assist in targeting care could be a strategy to reduce cost and time demands on providers, reduce variation, and increase reliability and capacity, he suggested. The intersection of data about a specific patient and the thousands of data points in existing TBI registries could also yield additional understanding that translates into beneficial interventions for TBI, but these data are too numerous for any individual physician or neurosurgeon to analyze.

Adam Barde, Slalom Consulting, noted that his company is currently developing a platform that uses a simple algorithm to determine whether a symptom reaches a certain threshold to flag for providers. However, future versions may use AI in other ways and feature learning aspects. Algorithms developed to analyze imaging in the diagnosis of melanoma, breast cancer, and cervical cancer, for example, have matched or surpassed human accuracy levels, indicating potential for future TBI uses, he noted. David Wright, Disruptive Innovations, remarked that technology tools need to be used in combination with human expertise, rather than seen as replacements. These tools can be particularly useful in the knowledge management arena, which features fewer patient-facing implications and less risk from an administrative burden standpoint.

McCrea described AI applications in TBI as “the great unknown,” stating that the potential prognostic usefulness of AI in TBI models should not be dismissed and requires further investigation. For example, AI-enabled analysis drawing on large datasets could suggest which patients are predicted to have good outcomes or poor outcomes, assisting providers to identify interventions for the latter group that facilitate their recovery. Innovations augment, rather than replace, a clinician’s expertise, he emphasized, and hold potential to improve diagnostic accuracy, prognostic modeling, and—ultimately—contribute to better outcomes for patients.

WORKSHOP WRAP-UP

McCrea closed out the workshop, thanking the workshop planning committee, speakers and moderators, and participants for the active and informative discussions over the course of the day. The workshop sessions highlighted patient, family, and provider needs associated with TBI followup care, as well as providing examples of models and strategies that can better support high-quality follow-up care and care continuity after injury, he reflected, concluding that such discussions and others among the varied organizations and communities active in TBI care and research will continue to inform the forum and its future work.

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