Data Integration in Learning Health Care Systems for Traumatic Brain Injury Proceedings of a Workshop (2024) / Chapter Skim
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6 Data Capture, Surveillance, and Supporting Long-Term Care Needs
6 Data Capture, Surveillance, and Supporting Long-Term Care Needs
Pages 57-72
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From page 57... ...
(Daugherty) • The CDC's National Concussion Surveillance System pilot sur vey found that 12 percent of adults and 10 percent of children reported experiencing a head injury in the past year, represent ing significant increases from prevalence rates in other studies.
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From page 58... ...
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)
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From page 59... ...
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.
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From page 60... ...
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.
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From page 61... ...
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.
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From page 62... ...
In 2018, the Virginia Department for Aging & Rehabilitative Services 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)
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From page 63... ...
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.
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From page 64... ...
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)
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From page 65... ...
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.
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From page 66... ...
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)
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From page 67... ...
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)
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From page 68... ...
68 FIGURE 6-1 Examples of how the Department of Veterans Affairs is using research infrastructure and integration with clinical care to support better outcomes for veterans with TBI. NOTE: QUERI = VA Quality Enhancement Research Initiative; IETP = Intensive Evaluation and Treatment Program.
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From page 69... ...
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.
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From page 70... ...
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)
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From page 71... ...
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 waiver 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.
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From page 72... ...
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 the Centers for Medicare and Medicaid Services (CMS) State-Level Surveillance Data Peek-Asa asked about opportunities to incorporate state-based TBI surveillance into plans for a nationally weighted data sample.
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