Data Integration in Learning Health Care Systems for Traumatic Brain Injury Proceedings of a Workshop (2024) / Chapter Skim
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5 Examples of Learning Health Care Systems in Traumatic Brain Injury
5 Examples of Learning Health Care Systems in Traumatic Brain Injury
Pages 37-56
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From page 37... ...
• The Transforming Research and Clinical Knowledge in TBI study has led to advances in TBI assessment tools such as the Glasgow Outcome Scale-Extended, OsiriX common data elements software for evaluating MRI scans, and TBI blood biomarker rapid testing. (Giacino)
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From page 38... ...
CARE4TBI: COMPARING TREATMENT APPROACHES TO PROMOTE INPATIENT REHABILITATION EFFECTIVENESS FOR TRAUMATIC BRAIN INJURY Jennifer Bogner, professor and Bert C Wiley, M.D., Endowed Chair in the Department of Physical Medicine and Rehabilitation at the Ohio State University (OSU)
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From page 39... ...
TBI Model Systems program, and stakeholder engagement.3 The CARE4TBI study aims to develop standardized data elements within electronic health records (EHR) across sites to enable data extraction for research purposes and clinical operations.
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From page 40... ...
Administration, such as rehabilitation leaders and upper hospital management, have enabled the study to effect change by allowing considerable changes within their systems. Data Capture Standardization The first phase of CARE4TBI focused on the standardization of EHR data capture, which involved identifying, designing, and standardizing data elements to be collected in session notes and ensuring these are extractable for both research and clinical operations.
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From page 41... ...
TRACK-TBI NETWORK AND NINDS COMMON DATA ELEMENTS Joseph Giacino, director of rehabilitation neuropsychology at Spaulding Rehabilitation Hospital and professor of physical medicine and rehabilitation at Harvard Medical School, discussed the Transforming Research and Clinical Knowledge in TBI (TRACK-TBI) study in terms of its aims, achievements, and efforts toward becoming a functioning LHS.4 He began by identifying seven levels of care in the United States that -- depending on the severity of the injury and length of the treatment course -- may be appropriate for people with TBI.5 He described this system as highly fragmented, 4 More information about the TRACK-TBI network is available at https://tracktbinet.ucsf.
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From page 42... ...
Partnerships with stakeholders identify common goals and well-defined roles. • Harmonized Infrastructure: Harmonized infrastructure involves common data elements that apply to both research and clinical practice, EHR equipped with data capture, and data repositories with international interoperability.
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From page 43... ...
Conceived as a public–private partnership, TRACK-TBI has established a diversely populated ecosystem of partners from industry, government, academia, and philanthropy over the past decade and has forged close ties to Europe's largest TBI study, the Collaborative European Neurotrauma Effectiveness Research in TBI (CENTER-TBI) .6 From the start, both projects have harmonized efforts and are using the NINDS TBI Common Data Elements to enable data sharing and, in turn, generate more robust research findings.7 He noted that NINDS is creating a 3.0 version of the TBI Common Data Elements, and this version promises higher measurement precision than previous versions.
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From page 44... ...
The initiative also conducted studies to validate selected common data elements within their context of use and then conformed these elements to global standards to facilitate data sharing and drug development. TRACK-TBI Achievements Giacino reviewed TRACK-TBI research findings and innovations to date, noting how the network's development of TBI-relevant clinical research tools, such as scoring and classification approaches, software modules, and data standards contribute to the underlying goal of linking research results to improved care through an LHS approach.
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From page 45... ...
. The Clinical Data Interchange Standards Consortium incorporated the TRACK-TBI common data elements into the Therapeutic Area Data Standards in efforts to ensure global standardization (Clinical Data Interchange Standards Consortium, Inc., 2015)
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From page 46... ...
In working toward harmonized infrastructure, TRACK-TBI has made use of common data elements, patient-level data capture, and international alignment but has yet to establish an interoperable data repository. The network has successfully put the components of standardized data acquisition into place by developing standardized outcome measures and establishing systematic follow up through all phases of TBI care.
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From page 47... ...
. FIGURE 5-2 DoD traumatic brain injury totals as of May 9, 2023.
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From page 48... ...
Results indicated that Special Forces, Explosive Ordinance Devices units, and some artillery units were at a higher risk for TBI than other occupational specialties.. The DoD regional educational coordinator network then targeted leadership in high-risk military occupational specialties to provide Warfighter Brain Health training to improve capacity for early TBI detection.10 Given that the DoD TBI case definition includes an "incidence rule" whereby service members only have one TBI counted per lifetime, Stout emphasized the need, and current efforts to establish, DoD surveillance methodologies to capture service members' subsequent TBIs.
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From page 49... ...
Stout also outlined several limitations to the findings. For example, conditions such as PTSD and suicidal ideation are likely underreported by service members because of associated stigma, and the presence of undiagnosed mild TBIs or other undiagnosed conditions could also contribute to underestimation of co-occurring conditions, particularly given that repeat TBIs are omitted by current DoD surveillance methodologies.
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From page 50... ...
This practice enables early identification of TBI patients who become symptomatic after the initial care visit. Aligning with the Military Acute Concussion Evaluation 2 and Progressive Return to Activity Following Acute Concussion tools,11 this policy represents a substantial change 11 For these tools, see https://health.mil/Reference-Center/Publications/2020/07/30/Military Acute-Concussion-Evaluation-MACE-2 and https://health.mil/Reference-Center/Publications/ 2023/01/23/Progressive-Return-to-Activity-Primary-Care-for-Acute-Concussion-Management (accessed January 12, 2023)
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From page 51... ...
Lessons Learned Highlighting the complexity of large systems, Bogner noted her surprise at the heterogeneity in electronic health record platforms across different sites. Additionally, much of the documentation that providers enter into the EHR is aimed at supporting clinical use but is not provided in a format that can be evaluated to improve clinical operations and outcomes across PREPUBLICATION COPY -- Uncorrected Proofs
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From page 52... ...
TBI Prevention Kristine Yaffe, director of the Center for Population Brain Health at the University of California, San Francisco, asked how an LHS can improve prevention efforts, given the high rates of PTSD and sleep impairment prior to TBI and that a prior TBI constitutes the biggest risk factor for experiencing another TBI. For example, a data dashboard could potentially assess TBI risk similar to fall-risk calculations for older adults.
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From page 53... ...
He asked how databases can be better connected to improve longitudinal assessment. Bogner replied that the TBI Model Systems program performs lifetime tracking of TBI patients who receive inpatient rehabilitation services.
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The National Traumatic Databank and TBI Model Systems conducted probabilistic matching with some success, he said. Payment Models for TBI Care Giacino underscored the challenge of integrating an LHS with payment models.
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Geoffrey Manley, chief of Neurosurgery at San Francisco General Hospital and vice chairman of neurological surgery at University of California San Francisco, emphasized that many patients will be unable to access the interventions they need to fully return to their families and jobs without changes to this 3-hour rule. John Corrigan, director of the Ohio Valley Center for Brain Injury Prevention and Rehabilitation, commented that the Forum on Traumatic Brain Injury should address insurance-related barriers and could look to other countries in doing so.
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From page 56... ...
Rather, factors including social setting, environment, treatment interventions, and qualification for rehabilitation services form a complex web that affects outcome and thereby requires a comprehensive approach to TBI care and recovery. PREPUBLICATION COPY -- Uncorrected Proofs
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