6

Data Capture, Surveillance, and Supporting Long-Term Care Needs

___________________

¹ This list reflects the rapporteurs’ summary of points made by the identified speakers, and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine. They are not intended to reflect a consensus among workshop participants.

The sixth session of the workshop focused on national, state-level, and agency data analysis efforts to inform public health and patient care strategies. It spotlighted programs by the Centers for Disease Control and Prevention (CDC), the Virginia Department for Aging & Rehabilitative Services (DARS), and the Department of Veterans Affairs (VA) to collect surveillance data, collaborate with community partners, and ultimately improve outcomes for individuals living with traumatic brain injury (TBI). Kristine Yaffe, director of the Center for Population Brain Health at the University of California, San Francisco; Rebeccah Wolfkiel, executive director at the National Association for State Head Injury Administrators; and Corinne Peek-Asa, vice chancellor for research at University of California, San Diego, served as moderators of the session.

TRAUMATIC BRAIN INJURY SURVEILLANCE AT CDC

Jill Daugherty, epidemiologist on the CDC Division of Injury Prevention TBI Team, discussed the agency’s TBI surveillance efforts, including how such data informs development of the National Concussion Surveillance System. The CDC TBI team has four prioritized goals: (1) identify effective strategies to prevent youth sports- and recreation-related TBI, (2) identify and test methods to improve the measurement of TBI burden, (3) characterize TBI-related disparities and identify strategies to increase health

equity, and (4) determine effective strategies to improve the diagnosis and management of TBI. Highlighting the second goal, she explained that CDC efforts to better understand the public health burden of TBI include conducting surveillance, monitoring trends in TBI incidence and prevalence, and identifying groups disproportionately affected by TBI. Surveillance aids in the development of specialized TBI interventions and in the detection of disproportionate disease burden. Moreover, TBI surveillance increases the understanding of the most common principal mechanisms of injury and informs creation of mechanism-based TBI prevention efforts.

National Concussion Surveillance System Pilot

Historically, the CDC TBI team has used health care datasets to conduct surveillance work, said Daugherty. These data indicate that approximately 214,000 TBI-related hospitalizations took place in the United States in 2020 (CDC, 2023). In 2021, approximately 69,000 TBI-related deaths occurred. Although TBI-related hospitalizations have decreased each year that CDC has documented these data, deaths have slowly increased. These figures constitute a substantial public health problem, yet they do not capture individuals with TBI who sought care in a primary care or urgent care setting or did not seek care. Hence, TBI burden data are skewed toward more severe TBIs that require hospitalization or cause death and underestimate the true prevalence of TBI in the United States. Over the past decade, CDC has worked to establish a National Concussion Surveillance System (NCSS) to address this issue.

Daugherty described that a 2014 National Academies consensus study, Sports-Related Concussions in Youth: Improving the Science, Changing the Culture, outlined gaps in incidence and prevalence estimates of youth sports-related concussion and recommended that CDC establish and oversee a national surveillance system to accurately determine the incidence of sports-related concussion in youth (IOM-NRC, 2014). Congress indicated support for the NCSS via the TBI Program Reauthorization Act of 2018, which stated that CDC may implement concussion data collection and analysis to determine the prevalence and incidence of concussion.² However, it was not until December 2022 that Congress made a budget appropriation for concussion surveillance. The CDC TBI team designed and fielded an NCSS pilot in 2018 and 2019 with the primary goals of testing methodology and evaluating a novel TBI case definition for use in classifying TBI based on self-report data.

___________________

² Traumatic Brain Injury Program Reauthorization Act of 2018, Public Law 115-377, 115th Cong., 2d sess. (December 21, 2018).

Methodology featured a household survey administered via computer-assisted random digit dial telephone survey. The pilot study interviewed adults about head injuries that they or their children sustained in the previous 12 months, and adolescents aged 13 to 17 years were interviewed separately. Researchers collected information on signs and symptoms experienced after each head injury, participant demographics, mechanism of injury—including whether the injury was sports related—medical care received, and indicators of postinjury functioning. Data collection launched in September 2018 and concluded 1 year later after obtaining completed surveys on approximately 10,000 adults, 3,500 children ages 5 to 17 years by proxy reporting from their parents, and 198 adolescents.

Preliminary conclusions of the NCSS pilot data indicate that 12 percent of adults and 10 percent of children reported experiencing a head injury in the prior year, constituting higher percentages than found in other surveys, said Daugherty. Given that the pilot was established to fill data gaps on individuals who do not receive medical treatment in a hospital setting following injury, researchers expected that prevalence rates would surpass those of other studies.

After conducting the survey, she said, researchers determined the pilot study was overly complex. The survey included questions regarding up to three head injuries the adult experienced and up to three head injuries per child for up to seven children in the household. In households with high burden, the survey became excessively lengthy, highlighting the need for a streamlined collection tool. Additionally, the sample size of 198 adolescents was much smaller than that of younger children and of adults owing to the difficulty in gaining consent to interview adolescents directly.

Next Steps in Establishing National Surveillance

Proposed NCSS next steps include an address-based sampling methodology to survey randomly selected adults about head injuries sustained in the previous 12 months, Daugherty said. Researchers plan to make the survey less burdensome by only inquiring about the most recent head injury that adult respondents or their children sustained. Furthermore, respondents will have the option of completing the survey by telephone call-in or online. The pilot generated a revised TBI case definition, and this will serve as the basis for incidence and prevalence estimates. CDC has awarded a contract for the next iteration of NCSS, which will use a modified survey based on pilot results.

Expanding the Knowledge Base

A continuously operating NCSS would increase the TBI knowledge base by providing national prevalence and incidence estimates of TBI in

the United States, Daugherty said. Ongoing surveillance would identify the most common mechanisms of TBI, which may differ from the mechanisms that result in hospitalization or mortality. Surveillance data could deepen the understanding of TBI outcomes in terms of common symptoms, the amount of time missed from work or school as a result of injury, and whether medical evaluation was sought. Furthermore, researchers could use NCSS data to identify those who are at a higher risk of sustaining a TBI. Given that fully establishing the NCSS will take time, CDC is concurrently laying groundwork for the NCSS while using alternate methods of surveillance. For example, the CDC TBI team added five questions to the 2023 National Health Interview Survey.³

Conducted by the CDC National Center for Health Statistics, this survey has been collecting data with a large sample size for several decades. Two of the five added questions pertain to TBI prevalence, two ask about sports- and recreation-related TBI, and one question regards medical evaluation after injury. The 2024 survey will repeat these questions and will provide national-level TBI surveillance data, although these data will lack the granularity of the NCSS pilot survey.

Additionally, the CDC Behavioral Risk Factor Surveillance System (BRFSS) gathers nationally representative data via an annual survey.⁴ The survey content varies by state, and TBI questions are not part of the core survey, precluding the generation of nationally representative data on TBI. Although some states have opted to include modules for TBI, the questions vary by state and data cannot necessarily be easily combined nor compared. The CDC TBI team is working to increase adoption of optional TBI modules among additional states to expand the state-level TBI data available. She noted that BRFSS data are released approximately 8 months after data collection, demonstrating CDC’s commitment to delivering timely data for public health action.

DEVELOPING LEARNING HEALTH SYSTEMS TO SUPPORT LONG-TERM CARE NEEDS

Christiane Miller, director of the DARS Brain Injury Services Coordination (BISC) Unit, focused on the key roles that state-level data and community-based services play in care once patients leave the hospital, and discussed efforts in Virginia to collect and integrate data from a variety of sources—including community service providers—to better understand

___________________

³ More information about the National Health Interview Study is available at https://www.cdc.gov/nchs/nhis/index.htm (accessed December 5, 2023).

⁴ More information about the Behavioral Risk Factor Surveillance System is available at https://www.cdc.gov/brfss/index.html (accessed December 5, 2023).

outcomes and improve supports for people with TBI. The Virginia Department of Health (VDH) uses registry data for outreach and other needs. In collaboration with the Brain Injury Association of Virginia, BISC sends outreach letters to all people identified by the trauma-specific registry as having a TBI. In 2022, letters sent to 160 individuals resulted in only a 3 percent response rate. However, individuals with TBI sometimes respond to the letters more than a year later, stating that they did not follow up sooner because of being overwhelmed after their injury.

Guidelines vary from state to state in terms of limits to data registry access and whether multiple outreach efforts are allowed. Additionally, statutes for registries are not funded in all states, and thus not all states have registries. In Virginia, registry data are underused and are only now being explored for uses beyond outreach, said Miller. Hospitals are required to upload data to the VDH database on a quarterly basis. Over the past decade, the participation rate of hospitals completing the majority of data elements has increased dramatically. Given that these data contain demographic and geographic information and the first point of hospital discharge, mining the registry data and combining it with other sources could create a more complete and accurate picture of TBI in Virginia.

Miller emphasized that registry data are sourced from hospitals and therefore do not include individuals unless they visit the emergency department for their head injuries. Access to registry data often becomes available 3 to 6 months postdischarge. However, this delay appears to coincide with the amount of time many patients need to feel ready to respond to outreach efforts.

TBI Model Systems Collaboration

Virginia houses a TBI Model Systems site at Virginia Commonwealth University (VCU), said Miller. The state allocates trust fund revenues—generated from a portion of the fees collected at driver’s license reinstatement—to research and implementation of new or innovative services. In 2018, the Virginia DARS contracted with the VCU TBI Model System to develop a plan for integrating the data resources that could be used to plan and expand services for people living with TBI. After a search for all possible TBI-related databases and resources, the VCU TBI Model System explored four specific data sources: the Virginia state trauma registry; the Virginia All-Payer Claims Database (APCD), the Rehabilitation Services Administration Case Service Report (RSA-911), and TBI Models Systems data. Researchers collected data on the use of inpatient and outpatient treatment from APCD, data on employment outcomes for students graduating from high school from RSA-911, and approximately 35 years of long-term outcomes data from TBI Model Systems. Thus far, efforts to integrate these

datasets have been unsuccessful because of the lack of common identifiers. In recent years, Virginia has developed a data trust, and this may prove useful in the future.

Miller said that the lack of connected data systems led to the Virginia Brain Injury Data Sharing Summit in 2022, at which brain injury professionals, service providers, and state agency representatives convened to discuss ways forward. Among the needs highlighted at the summit, a better understanding of where people with TBI receive community-based services outside of the TBI system was identified as necessary for facilitating connections and collaborations needed to effectively collect and use TBI data. For example, domestic violence programs, jails, department of corrections, homelessness programs, and mental health programs often interact with individuals with TBI, and screening conducted at such sites could fill data gaps. Furthermore, the summit identified the need to better understand TBI comorbidities and other co-occurring challenges in order to develop training, screening, and collaborative services for TBI clients who also face issues related to mental health, substance use disorder, intellectual or developmental disabilities, housing, employment, and/or aging.

Currently, a Virginia-wide TBI screening effort is taking place in domestic violence programs, and three pilot programs in homeless shelters will soon begin implementation. Additionally, a federal grant-funded pilot screening program will be conducted in at least two community-based mental health programs and one state mental health facility. She emphasized the importance of designing sustainable efforts and embedding these into the processes of all agencies and stakeholder groups.

Next Steps in Virginia TBI Data Collection

Following the initial research project and data summit, a second 3-year trust fund grant was awarded to the VCU TBI Model System to research transitions and disparities in care and outcomes for neurotrauma, said Miller. This work will identify when and how transitions of care occur, how these transitions affect outcomes, and those at greater risk of experiencing negative health outcomes. Moreover, BISC is working to gather data via the BRFSS. As Daugherty mentioned, BRFSS survey content varies by state. Currently, Virginia does not have approval to include optional questions, but BISC is completing an application to gain approval to add TBI-related queries to the data collection effort. She noted that the ability to glean TBI data from the BRFSS survey would not only benefit Virginia, it would contribute to a clearer picture of the nationwide effects of TBI. These data could potentially inform treatment, advocacy, policy, and funding. Cost for the BRFSS varies across states and can be prohibitive. She raised the idea of TBI experts collaboratively identifying a set of questions and advocating for

their addition to the BRFSS in each state. Such an effort would enable the comparison of outcome indicators such as health status, number of healthy days, health care access, exercise, and alcohol consumption.

Virginia uses state funds to purchase case management, day support, and other related services from eight community-based brain injury service providers, Miller described. Historically, the data required from these providers has been limited to the numbers of clients served and their demographic information. Efforts are currently underway to collect data on outcomes, which would aid in identifying services that are most effective and areas that need more support. The state could then direct funding with more precision. On January 1, 2024, Virginia amended its state plan to include Medicaid reimbursement for targeted brain injury case management services. This development comes after a year of preliminary work with the Virginia Department of Medical Assistance Services. Prior to this collaboration, BISC lacked state-level data on individuals with TBI from Medicaid health care claims and on services provided via developmental disability Medicaid waiver.⁵ The effort to establish Medicaid reimbursement for brain injury services opened a trove of data to BISC; the unit plans to analyze data from Medicaid, managed care organizations, and state-funded providers to identify outcomes.

Sheltering Arms Rehabilitation Centers

Miller described Sheltering Arms Rehabilitation Centers as an example of a learning health system (LHS). In partnership with the VCU TBI Model System, Sheltering Arms collects and uses data to evaluate the effectiveness of their practices and protocols. Monitoring extends to all practices, including those identified as evidence-based best practices, to determine the effectiveness of processes and interventions with different individuals. Sheltering Arms works to identify differences in effectiveness stemming from specific individual needs or intervention delivery. Recognizing that the challenges individuals face do not disappear once services end, this data-based organization established a care transitions program in which community health workers track patients for 6 to 12 months to provide information and to help ensure that patients are attending medical appointments and taking prescribed medications. She noted that these services resemble transition-of--

___________________

⁵ States request Medicaid waivers from the Centers for Medicare and Medicaid Services (CMS). Waiver programs allow states to provide covered home- and community-based services and supports to qualifying individuals. Information on such waiver programs is available at https://www.medicaid.gov/medicaid/home-community-based-services/home-community-basedservices-authorities/home-community-based-services-1915c/index.html. Information on Virginia’s Developmental Disabilities waiver program is available at https://www.dmas.virginia.gov/for-providers/long-term-care/waivers/ (accessed February 26, 2024).

care services for older adults moving from inpatient to outpatient settings. A TBI Model Systems grant will enable community health workers to engage with caregivers to determine needed supports. Miller commented on the invaluable insight gleaned from direct communication with individuals with TBI and their caregivers, and she urged researchers to routinely engage in dialogue with TBI survivors, even if only on an annual basis, to gain perspective on aspects of living with the injury that may not emerge from the data.

LEARNING HEALTH SYSTEMS FOR TRAUMATIC BRAIN INJURY IN THE VA

Stuart Hoffman, senior health science officer for TBI for the VA Office of Research and Development, discussed VA efforts to better understand TBI comorbidities, develop TBI multimodal biomarkers, improve screening and evaluation efforts, and identify and scale effective treatment approaches. He outlined that an LHS involves systems of leadership, governance, community building, research, data and analytics, and quality improvement (Lannon et al., 2021). Leadership encourages a network to perform as a system, governance directs research, community building forms connections between investigators and clinicians, and research and data analytics inform improvements in health care services and generate innovation.

Causes of TBI in service members include training, shoulder-fired weapons, and occupational blast, and often involve repetitive exposures, Hoffman explained. He recounted an exchange years ago with a veteran receiving care at the Defense and Veterans Brain Injury Center—now the Traumatic Brain Injury Center of Excellence—who was diagnosed with a TBI while being treated for a limb injury. When Hoffman asked about the TBI, the veteran said that his challenges stemmed from post-traumatic stress disorder (PTSD), not TBI. This gave him pause, as the veteran was receiving care at a brain injury center and not at a mental health treatment facility. He began to consider the various treatment destinations for veterans with TBI, including mental health services, neurology providers, and physical medicine and rehabilitation. Additionally, some individuals who enter the armed forces are at a higher risk for TBI. For example, rural areas are overrepresented in TBI prevalence data. Approximately a third of veterans with a lifetime history of TBI experienced their first TBI before the age of 18. The complexity of TBI led Hoffman to look to an LHS as a mechanism for exploring comorbidities.

TBI Comorbidities

A 2009 study of 340 veterans returning from service in Iraq found high co-occurrence rates of persistent postconcussive symptoms, PTSD,

and chronic pain (Lew et al., 2009). Hoffman explained that at that time, an understanding of TBI’s complexity was beginning to emerge. Up to that point, some mental health professionals believed that any brain injury–related disability lasting longer than 30 days should be attributed to a mental health issue rather than TBI. Care providers now know that in some cases TBI symptoms last for years and often co-occur with conditions such as sensory disorders; psychological conditions including PTSD, depression, substance use disorder, and suicidal ideation; chronic pain; mobility issues; cognitive disorders; executive dysfunction; effort control impairment; and endocrine dysfunction. A 2021 study of nearly 200,000 VA electronic health records (EHRs) found that, after adjusting for demographics and medical and psychiatric conditions, veterans with TBI were 41 percent more likely to develop a sleep disorder than veterans without TBI (Leng et al., 2021). He emphasized that poor sleep quality affects health, mental health, and quality of life.

Having TBI increases one’s risk of cardiovascular disease (CVD), and both TBI and CVD are risk factors for dementia, said Hoffman (Kornblith et al., 2022). Moreover, veterans with TBI have higher mortality rates from accidents, suicide, cancer, CVD, and homicide than veterans without TBI and the general population (Howard et al., 2022). Suicide rates are 57 percent higher for veterans than for nonveterans, and TBI exacerbates this risk (Howard et al., 2023). Increased impulsivity associated with TBI can fuel behaviors that create dangerous situations; this dynamic may account for the higher homicide mortality rate seen among veterans with TBI. He noted that an upcoming paper examines an increased risk for certain cancers associated with moderate, severe, and penetrating brain injury. The increased risk of mental and physical health problems for people with TBI shortens lives and may also play a role in the increased risk of suicide in this population, he added.

Biomarkers Research, Screening, and Evaluation

The Commander John Scott Hannon Veterans Mental Health Care Improvement Act of 2019 includes a requirement via section 305 that VA fund an initiative to identify, validate, and integrate brain and mental health biomarkers among veterans, Hoffman said.⁶ The requirement launched the Precision Mental Health for Veterans Initiative, which uses longitudinal studies to meet the intent of the law and develop multimodal biomarkers

___________________

⁶ Commander John Scott Hannon Veterans Mental Health Care Improvement Act of 2019, Public Law 116-171, 116th Cong., 2d sess. (October 17, 2020).

using imaging, assessments, fluid markers, and physiological measures. The longitudinal studies come from the Long-term Impact of Military-relevant Brain Injury Consortium—Chronic Effects of Neurotrauma Consortium (LIMBIC-CENC) and the Translational Research Center for TBI and Stress Disorders (TRACTS). A partnership between VA and DoD, LIMBIC-CENC is a federally funded research project to better understand, treat, and prevent TBI.⁷ This project follows a cohort of veterans and service members broken into subgroups: TBI, TBI in addition to a mental health condition, a mental health condition and no TBI, and a control group. Based in Boston, TRACTS is a Rehabilitation Research and Development National Center for TBI Research that features long-term chronic TBI populated cohorts and has been operating for over a decade.⁸ The Precision Mental Health for Veterans Initiative is working to integrate biomarker measures into a clinical, actionable diagnostic.

Current VA data collection efforts include screening and a comprehensive evaluation of veterans from Operation Enduring Freedom, Operation Iraqi Freedom, and Operation New Dawn, said Hoffman (Figure 6-1). However, approximately one-third of veterans are not participating in the evaluation despite repeated requests. He stated that possible causes for lack of participation include difficulty remembering the evaluation, attributing symptoms to a comorbid condition rather than to TBI, or having difficulty engaging because of depression. To improve the participation rate, VA is developing a telemedicine approach to the comprehensive evaluation. Furthermore, VA is evaluating a multidisciplinary care approach for veterans with TBI to streamline access to neurological care, physical rehabilitation services, and mental health care.

The VA Quality Enhancement Research Initiative is currently evaluating this multidisciplinary approach. Should it prove successful, this approach will scale from five current sites to 23 network sites, with potential scaling to other VA sites nationwide. Additionally, a longitudinal study focusing on veterans with mild TBI is underway, and an upcoming longitudinal study will examine the trajectories of veterans with severe TBI. Hoffman emphasized that ongoing communication with clinicians enables researchers to understand treatment needs, and the resulting research generates findings that inform clinicians of best practices.

___________________

⁷ More information about the Long-term Impact of Military-relevant Brain Injury Consortium—Chronic Effects of Neurotrauma Consortium is available at https://www.limbic-cenc.org/ (accessed December 6, 2023).

⁸ More information about the Translational Research Center for TBI and Stress Disorders is available at https://www.va.gov/boston-health-care/research/the-translational-research-center-for-tbi-and-stress-disorders-tracts/ (accessed December 6, 2023).

DISCUSSION

Incidence Estimate Factors

Given that the NCSS pilot study reported higher incidence numbers than estimates in previous studies, Ramon Diaz-Arrastia, director of the TBI Clinical Research Center at the University of Pennsylvania, asked whether trivial head impacts might account for the variance. Daugherty acknowledged the possibility that minor head injuries that would not be classified as TBIs in a clinical setting were included in the incidence estimate. To address this, the study is using a tiered case definition that uses reported signs and symptoms to distinguish between a “probable TBI” and a “possible TBI.” For instance, a head injury with the sole symptom of headache would be classified as a possible TBI. This distinction will enable researchers to divide cases according to “probable” or “possible” TBI classification before prevalence and incidence estimates are published. Thereby, a more conservative estimate will include only the probable TBIs, such as people with head injuries who lost consciousness, have post-traumatic amnesia, or experience other specific symptoms.

Cases with more general symptoms that are not necessarily indicative of TBI would then be excluded from conservative estimates. She added that she is unaware of a national TBI incidence estimate that includes people who did not seek medical attention. The inclusion of people who experienced head injuries but were not seen in a health care setting could account for the discrepancy between the 12 percent of adults estimated to have experienced a TBI in the NCSS pilot study and the lower estimates in other studies. The 2017 Youth Risk Behavior Surveillance system estimated that 15 percent of high school students reported a past-year concussion from participating in sports (DePadilla et al., 2018). She noted that estimates from studies based solely on health care databases or that are not nationally representative are difficult to compare with NCSS pilot study estimates.

Data Collection Funding Sources

Wolfkiel asked about funding sources for the data collection mechanisms used in Virginia. Miller explained that the Virginia General Assembly funds these research efforts, enabling DARS to dedicate trust fund dollars to other areas. She noted that states without general assembly-allocated funds sometimes opt to use trust funds for research. A grant from the Administration for Community Living (ACL) funds the screening pilot programs that will soon be implemented in homeless shelters and community- and facility-based mental health providers. A prior ACL grant enabled the VCU

TBI Model System collaboration that explored data sharing and led to the Virginia Brain Injury Data Sharing Summit.

TBI Screening of High-Risk Populations

Wolfkiel asked Miller to discuss the role of screening and the use of screening data in service provision. Community screening enables the identification of people with TBI in non-health care settings, Miller replied. For example, a screening project conducted a few years ago in the juvenile justice system found that almost 50 percent of participants were at risk of having TBI. She expects that the screening program used by homelessness service providers will yield similar results for people experiencing homelessness. Individuals who had not experienced a TBI at the onset of homelessness may be at an increased risk of head injury because of the lack of safety associated with being unhoused. Many states are also exploring TBI screening in domestic violence programs because of the increased TBI risk from exposure to violence. In addition to data collection, screening efforts increase awareness of TBI among the service providers working with populations at higher risk for TBI, she emphasized. The screening programs involve training for community service providers and partners these organizations with local, community-based brain injury programs.

To facilitate TBI screening, the National Association of State Head Injury Administrators (NASHIA) launched the Online Brain Injury Screening and Support System (OBISS), an online, cloud-based version of the Ohio State University TBI Identification Method.⁹ The screening tool’s online format can be used in a variety of settings. With this tool in place, BISC can recommend screening implementation to the community-based mental health centers they communicate with. The screening results can then inform training needs. Miller remarked that BISC had allocated almost $100,000 to the process of incorporating a screening tool into the EHR. The advent of OBISS made it possible to instead purchase a subscription for the screening tool and reallocate remaining funds to other needs. During intake, staff can review the OBISS results and indicate in the EHR when an individual is at risk of having TBI. The EHR can then trigger referral processes for therapists and case management teams. Simultaneously, this system provides BISC with state-level OBISS data.

Social Factors as Complex Causes of TBI

Given the current political unrest and major disasters affecting many of the world’s continents, traumatic stress and biomechanical traumatic

___________________

⁹ See https://www.nashia.org/obisssprogram (accessed January 12, 2024).

injury will likely increase, Peek-Asa noted. She asked how systems might approach integrating factors such as biochemical sequelae of psychological trauma and biomechanical, cellular, and physical damage to neurons and brain structures. Hoffman replied that this complex interplay warrants care from integrative, multidisciplinary care teams, such as the teams in place at the Palo Alto, San Antonio, Tampa, Richmond, and Minneapolis VA Polytrauma Rehabilitation Centers. Transferring this care approach to the private sector would likely require a payment algorithm that enables insurer coverage for these services.

Telemedicine in Patient Engagement

Referencing the third of veterans who screened positive for TBI but did not respond to requests to participate in a comprehensive evaluation, Jeffrey Bazarian, University of Rochester Medical Center, asked whether telemedicine is effective in increasing engagement in evaluation. Hoffman noted that currently, VA telemedicine evaluations are in the planning stages as a component of a validation study. A group from the VA Hudson Valley health care system has been conducting telemedicine evaluations on a smaller scale for several years and has seen positive outcomes from this effort. Thus, VA is looking at scaling this approach and determining the feasibility of having staff available to answer calls for evaluations 24 hours a day, 7 days a week.

The Role of Medicaid Waivers in the TBI Care System

Donald Berwick, president emeritus and senior fellow of the Institute for Healthcare Improvement, asked about the status of state Medicaid waivers for TBI, whether a template or model waiver is available to aid additional states in implementation, and how many states are currently providing this eligibility status to individuals with TBI. As noted by Miller, state Medicaid waivers that enable longer term home- and community-based services and supports are an important aspect of the care ecosystem for many people impacted by TBI, highlighting how the learning health system concept for TBI needs to extend beyond hospital-based systems.

Miller noted that there are multiple options for TBI-relevant waivers, including community-based waivers and pilot demonstration waivers. John Corrigan, director of the Ohio Valley Center for Brain Injury Prevention and Rehabilitation, stated that approximately 19 states currently have TBI Medicaid waivers in place. The variance between waivers reflects a lack of standardization that may warrant consideration of creating a template or model. However, a general trend away from additional population-specific Medicaid waivers is at play, and some states have recently incorporated

TBI-specific waivers into more generic disability waivers. Miller also shared her experience in seeking a TBI Medicaid waiver in Virginia, which has not yet been approved. The process of demonstrating feasibility and obtaining approval for new waivers is often complex. In Virginia, for example, efforts to obtain a TBI waiver have involved the state Medicaid agency as well as colleagues from NASHIA and technical assistance funds from CMS.

State-Level Surveillance Data

Peek-Asa asked about opportunities to incorporate state-based TBI surveillance into plans for a nationally weighted data sample. Daugherty remarked on the feedback received from states on the value of state-level TBI prevalence and incidence estimates. A potential opportunity to meet the needs for both nationally representative estimates and state-level estimates involves creating NCSS on a scale large enough to produce both state and national estimates. This would necessitate expanding NCSS by an approximate magnitude of 20 in terms of sample size and resources needed. Although such a development would not take place for several years, the possibility of obtaining representative samples from each state is being considered, she said. A second option is to use BRFSS by adding TBI questions to the core survey. In the event that changing the core survey is not feasible, NCSS could create a standardized module that states could adopt to enable state-to-state comparisons. She noted that states currently must opt in to include TBI questions on customized BRFSS surveys. CDC is exploring the feasibility of various approaches to generating both state- and national-level TBI surveillance data.

Hoffman called for advocacy toward a national act for TBI similar to the National Alzheimer’s Project Act, which increased treatment and research for Alzheimer’s disease (AD).¹⁰ Given that a greater number of people in the United States are experiencing lingering TBI symptoms than AD-related dementia, and that a portion of individuals with AD likely had one or more TBIs in their lifetime, TBI warrants increased services, funding for better care, and more research, he contended.

___________________

¹⁰ National Alzheimer’s Project Act, Public Law 111-375, 111th Cong., 2d sess. (January 4, 2011).