Department of Rehabilitation Traumatic Brain



Department of Rehabilitation Traumatic Brain Injury Registry Subcommittee Meeting MinutesTuesday, July 6, 2020, 1:30 p.m. – 2:30 p.m. Videoconference meetingCommittee Members (present):Daniel Ignacio, St. Jude Brain Injury Network and TBI Survivor (Chair)Dr. Katie Shinoda, Dignity Health and Mercy General HospitalDr. Bennet Omalu, Bennet Omalu Pathology DOR Staff (present):Tanya Thee, TBI Grant AdministratorMegan Sampson, ILATS ChiefVictor Duron, DOR Deputy DirectorAbsent:Dr. Henry Huie, Santa Clara Valley Medical Center Dr. Steven T. Chan, Physical Medicine and Rehabilitation (PMR) at Kaiser PermanenteDr. Maheen Adamson, Defense and Veterans Brain Injury Center, VA Palo Alto Health Care SystemMembers of the Public: Jerry Chen, TBI Survivor, Santa Clara Valley Medical CenterDan Clark, CATBIJulie Moua, Department of Veterans AffairsVincent MartinezCall to OrderLead Daniel Ignacio called the meeting to order at 1:36 p.m. and quorum was not established.Agenda Item 1: Welcome and IntroductionsLead Daniel Ignacio opened and welcomed members and guest speakers to introduce themselves.Agenda Item 2: Review and Discuss the June 9, 2020 Meeting MinutesLead Daniel Ignacio Meeting minutes for June 9, 2020 were approved.Agenda Item 3: Data ElementsLead Daniel IgnacioInsurance, county, location, length of stay, injury (ICD-10 codes), mechanism of injury, discharged to, blood alcohol level, substances involved, surgical codes, Glasgow Coma Scales (GCS) scores, outcome scales, functional independence and scores, nor psycho-social support data being collected, no support systems data being collected, these are all common data elements.Virginia had a registry but because it was so close to the state’s trauma registry, a legislative audit pulled the registry and gave them rights to the state’s trauma registry. There are some injury characteristics and demographics that are important (such as some data that our TBI Board would like our registry to collect) that need to be distinct to the TBI registry to open up discussions on data elements.Member Shinoda stated that the group needs to decide if the TBI registry needs to be completely separate or if the information they collect is sufficient for now. Consider starting with the trauma registry now and advocate for a full TBI registry at a later date. The bottom line is the purpose the data. Looking at incidence and prevalence data that is already being collected by the trauma registry or ae looking at functional data and capabilities of TBI survivors to connect to direct care/services? If the purpose of the registry is services then yes, the registry should be different. If the purpose is more about funding and legislation, then starting with incidence and prevalence data may be sufficient to start.Member Omalu attended some conferences and found some of the problems with registries is that there is a small focus on acute care and more focused on severe TBI. TBI is distinctive of a lifetime of trauma. Moving from active care, problems can begin six months later (or longer) and have different functional needs. Also need to consider the non-classic TBI such as high-schoolers that the trauma registry may not pick up. Feels the TBI registry must be separate from the trauma registry.Lead Ignacio agrees with Member Omalu, there is a difference between a medical model of a registry, which focuses on an injury with recovery; and a community-based rehabilitation model of a registry. TBI is not a discrete injury and is a lifelong adjustment. To enhance the successful reintegration of survivors relies largely on accessing pre-existing support systems.Member Shinoda stated there are lifelong needs that change over time and by accessing the information in the registry over the years as their needs changes is extremely valuable. What do we want to do with that type of a registry? A periodic needs assessment with the data?Lead Ignacio stated Alabama has a state trauma registry and then TBI specific data elements are forwarded to the Department of Rehabilitation services for the primary purpose of linking services to survivors.Member Shinoda wants thoughts on how to gather data for survivors who had their injury years ago – volunteer registry?Member Omalu suggested one way is to approach one of two of the major trauma centers (like USD), the neurosurgery department collects data on severe TBI patients and follow up with patients. The state Department of Rehabilitation might have to approach the department of neurosurgery. Other centers are UCLA and Santa Clara Regional Hospital. Provides a defined cohort of patients and set up a pilot to reach out to the patients. However, the typical bias is to gather info for severe TBI but the amount of repeated mild forms (such as concussion) may not be captured.Deputy Director Duron stated that in the near future, ACL will be looking at their next grant cycle. DOR will likely apply for it and CA needs to start thinking about our scope of work. This could be a topic to consider for the next grant (gather un reported numbers of survivors). A pilot initiative to try and capture the missing survivor data.Lead Ignacio spoke with NASHIA, Alabama and Colorado to see what their states were doing. NASHIA said no state has devised a way to gather that data (especially those who do not go to the emergency room or a medical center). Nebraska is trying to collect data from non-medical centers (sports clinics, medical offices, etc.).Member Omalu suggested tr a combination of hospitals and community healthcare centers. Healthcare centers are more likely to capture less forms of TBI (mild/moderate). Statistically, mild and moderate forms of TBI are typically more long lasting and lifetime effects and have an impact on society. From a forensic perspective, emerging epidemiological studies show that repeat offenders that are locked up long term in prisons are more likely to be exposed to a TBI, especially a mild form. We do not want to have a registry that is just what everyone else does or what has been done, what is the added value our registry can do? In the past twenty years, scientific knowledge and findings are discovering that milder forms of TBI are as severe as a severe form of TBI with tremendous behavior and cognitive manifestations that has a link to the underlying damage to the brain.Lead Ignacio stated 90% of head injuries are in the mild category, what makes the mild category impactful is the mental health categorization mild and major neurocognitive disorder. Two survivors of a mild TBI can both have the same mild neurocognitive disorder that is major but still be classified at opposite ends of the spectrum (mild – severe). Through conversations with NASHIA, no one is collecting that data. SB855 introduced by Scott Weiner (D), is proposing an expansion to the federal mental health parity act that covers nine diagnoses that are deemed medical necessary. Currently, medical insurers determine what is medical necessary. The bill states the provider would deem what is medically necessary and expands coverage at parity for DSM diagnoses which includes neurocognitive disorder would all under. Currently the bill is on its third amendment. Lead Omalu stated California frequently leads the county in almost everything. California can change the process of tracking mild TBIs and other states can follow. Historically, mild TBI were subjective based on CT scans. Lead Ignacio announced that St. Jude has put out a “call for concussion check” where people can call and explain their symptoms after a hit to the head that did not require medical treatment and can receive advice on if they may possibly have a TBI. Agenda Item 4: State Partnerships There were no state partnership presentations this meeting, a representative from Nebraska will join the August meeting.Agenda Item 5: Project Plan TrackerDOR, Tanya Thee indicated there are no new updates. In the future, guest speakers will be added to the tracker. Agenda Item 6: Other/New BusinessLead Daniel Ignacio The next board meeting is August 24, 2020 and teach committee will need to present their year three goals, timeline and budget. Agenda Item 7: Public CommentNo other comments.Agenda Item: AdjournmentMeeting adjourned at 2:32 p.m. ................
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