Data Integration in Learning Health Care Systems for Traumatic Brain Injury: Proceedings of a Workshop (2024)

7

Using Learning Health Care Systems to Combat Inequitable Outcomes in Traumatic Brain Injury

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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 seventh session of the workshop explored community partnerships as a mechanism to identify populations at a higher risk for traumatic brain injury (TBI), to expand TBI screening, and to build system capacity, particularly in areas with less access to TBI specialty care. Monique Pappadis, associate professor at the University of Texas Medical Branch at Galveston, moderated the session.

MEETING CLIENT NEEDS AND ENHANCING COMMUNITY CAPACITY

Peggy Reisher, executive director of the Brain Injury Alliance of Nebraska (BIA-NE), discussed the organization’s efforts to partner with community programs to estimate TBI burden, raise awareness, and provide services to individuals living with TBI. While working as a social worker in the TBI unit at Madonna Rehabilitation Hospital, she observed the limited services available to people once they leave the hospital. This service gap inspired her to collaborate in establishing BIA-NE, a statewide nonprofit organization working toward the mission of creating a better future for all Nebraskans through brain injury prevention, education, support, and advocacy. Serving individuals with TBI and acquired brain injury, BIA-NE provides services free of charge and does not require proof of brain injury. The organization has 10 employees to cover the entire state, much of which is rural, and places a particular focus on high-risk populations. Client support services include resource facilitation—linking clients to community support services—and brain injury–specific education.

Noting that some clients never visit the hospital for their brain injuries, she explained that individuals may not have accessed any brain injury education or services before contacting BIA-NE. In an effort to address the limited services and supports available for people with brain injuries in Nebraska, BIA-NE works to build systems capacity. Resource facilitators educate and collaborate with community providers, offering information and guidance about brain injury screening and case management. BIA-NE created a public service announcement video to generate awareness about the education and consultation services available to community providers.

Nebraska Brain Injury Data

In addition to providing resource facilitation, education, and capacity-building services, BIA-NE collects data on brain injuries in Nebraska, said Reisher, noting that many brain injury alliances and associations collect similar data and could offer insight within the context of partnerships to address TBI. In data BIA-NE has captured since July 1, 2021, 627 clients experienced 821 brain injuries, with leading causes including motor vehicle crashes (21 percent), falls (12 percent), nondomestic assault (12 percent), and domestic violence (9 percent). Among current BIA-NE clients, 80 percent of 749 injuries were TBIs and 20 percent were injuries stemming from internal health events or injuries less severe than TBI. The client average age at time of injury is 31 years old, with individuals ranging in age from 0 to 88 years old. She emphasized that some community-based programs provide support to children and adolescents with brain injury while others focus on older adults, but a services gap often exists for working-age individuals.

Referrals and Resource Facilitation

The majority of referrals to BIA-NE come from nonhospital sources, Reisher noted. Unfortunately, many clients do not hear about the organization until years after their injuries. Among BIA-NE clients served from July 2022 to June 2023, 24 percent received services within a year of their most recent injury, 19 percent began services 1 to 2 years postinjury, 18 percent received services within 3 to 5 years, and 39 percent did not receive resource facilitation services until more than 5 years after their injuries. She underscored that these numbers are an improvement from prior years, which she attributes to the organization’s public awareness efforts. Currently, two BIA-NE employees work closely with a corrections facility in Nebraska, resulting in increased referrals. Indeed, corrections constitutes the largest BIA-NE referral source, generating 16 percent of total referrals. Other leading referral sources include Internet searches (13 percent), community-based organizations (13 percent), and friends or family (12 percent). Only 6 percent of BIA-NE referrals come from hospitals.

Ongoing outreach efforts to community-based organizations have fueled an increase in referrals from these service providers. The most common area of need for clients is education about brain injury and how to best contend with its effects. Many of the staff members have experienced a brain injury themselves or have a loved one with a brain injury, enabling them to provide a personal perspective. In fact, Reisher works to hire staff with personal experience for this reason. Resource facilitators refer BIA-NE

clients to a variety of service providers, with 30 percent of referrals made to community-based organizations. A substantial proportion of clients, perhaps as many as half, have never been seen by a medical professional for their brain injuries and therefore require referrals to primary care providers or specialists. In sum, BIA-NE refers clients to 112 different organizations for needs ranging from medical care to housing to transportation. The organization also provides informational materials to clients.

Building Systems Capacity for High-Risk Populations

Many individuals with TBI do not receive services specific to brain injury, Reisher emphasized. However, some such individuals are involved with the Department of Behavioral Health, corrections, domestic violence programs, and other services. To better support people with brain injuries, BIA-NE has focused its efforts on populations at high risk to increase identification and connection to appropriate services. A grant-funded project that provided brain injury screening in domestic violence programs found that 58 percent of clients likely had TBI. Reisher described that such screening efforts also serve as a mechanism for raising awareness among program staff. For instance, during screening implementation, employees working at domestic violence programs made comments such as “Oh, maybe that’s why she doesn’t show up” and “Maybe that’s why she looks like she doesn’t care.” In response, BIA-NE facilitators discuss the difference between clients who won’t comply with program requirements and those who can’t, helping staff members to recognize the difference between deficit and defiance. A recent approval of a National Institutes of Health Research Project Grant (R01) will enable the implementation of brain injury screenings to a greater number of domestic violence programs in Nebraska.

Similar efforts are underway for youth in juvenile detention programs, said Reisher. Currently, BIA-NE is conducting screening with youth detained at the Douglas County Youth Center, the largest juvenile detention facility in Nebraska. Using a version of the Ohio State University TBI Identification Method (OSU TBI-ID) screening tool modified to include questions about acquired brain injury, BIA-NE screening efforts indicate that 67 percent of youth detained at the facility had likely experienced a brain injury. The organization is also conducting screening in mental health programs. At one behavioral health center, 77 percent of individuals screened positive for brain injury. She noted that many of the staff at mental health programs, including psychologists and psychiatrists, respond to BIA-NE training as if the brain injury information is new to them. The organization is currently working to establish a contract with an inpatient state hospital to screen patients at behavioral health hospitals.

Reisher explained that screening does not equate to brain injury diagnosis, and that facilitators make this clear during the training and the screening process. In addition to the OSU TBI-ID, screeners at the juvenile detention center use a juvenile symptoms questionnaire developed by the Mindsource Brain Injury Network.² This tool captures symptoms related to memory, processing, attention, inhibition, physical and sensorimotor, language, organization, mental flexibility, and emotions. In comparing results of the symptoms questionnaire with those from the OSU TBI-ID, statistical differences emerge between those who have likely experienced a brain injury and those who have not. Reisher noted concern from some participating programs, particularly within juvenile justice, that participants will use the information learned from screening as an excuse for problematic behavior. In reply, BIA-NE recommends that programs use the information learned from population screening and implement trauma-informed care practices to address needs related to brain injury. The organization provides management strategies to programs to use in working with clients with behaviors that may be related to deficits.

Training and Data Gaps

Many medical professionals in Nebraska do not have a thorough understanding of brain injury, and brain-injury specific training for medical professionals could benefit patients, Reisher said. To address patient information needs, BIA-NE has been working with some providers to cobrand brain injury-specific handouts to provide to patients at medical appointments or upon hospital discharge. She noted that providers appear more open to providing cobranded materials to patients than materials from BIA-NE. Training is also needed for community providers, and partnerships with state- or national-level brain injury alliances and associations can be used to meet this need. Currently, 10 state programs affiliated with the Brain Injury Association of America or the U.S. Brain Injury Alliance are using cloud-based software from Salesforce, Inc., to collect client data on cause of injury, gender, and race/ethnicity. Moving forward, the potential exists to add areas of need to this data collection. Each state organization is independent, and therefore the data from these 10 states are not connected. Reisher stated that assistance in examining data across states could benefit medical professionals as well as state organizations.

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² The Mindsource Brain Injury Network juvenile symptom questionnaire is available at https://mindsourcecolorado.org/juvenile-symptom-questionnaire/ (accessed December 9, 2023).

DISCUSSION

Awareness Gaps

Pappadis asked about current gaps in TBI awareness for service providers and for individuals living with TBI. Reisher remarked on a tendency among service providers to blame individuals for behaviors that are related to brain injury. She lauded the growing awareness of trauma-informed care and stated that the exclusion of brain injury information from trauma-informed care training is to the detriment of social justice. Some researchers have resisted BIA-NE requests to include brain injury in their studies, citing the absence of a concrete biomarker and the difficulty in differentiating whether certain behaviors should be attributed to brain injury or to other conditions such as attention-deficit/hyperactivity disorder. Given that limits within health insurance coverage often result in shortened hospital stays—and that many people experience brain injury symptoms for a long period of time—people with brain injuries often require community-based services, she noted. Providers of these services need additional training to better understand clients with brain injury, she said.

John Corrigan, director of the Ohio Valley Center for Brain Injury Prevention and Rehabilitation, remarked on the endorsement of trauma-informed care within behavioral health, domestic violence, and other systems of care. He explained that trauma-informed care is not a specific treatment, but rather knowledge and awareness that extreme emotional distress, particularly when experienced during childhood, can affect behavior years later. Similarly, neurologic-informed care is the awareness that neurologic impairment can affect behavior, helping providers to distinguish between can’t and won’t. Set for publication in November 2023, the American Society of Addiction Medicine Criteria guidelines on levels of care for substance use disorder treatment will include a chapter on cognitive impairment. It introduces the term neurologic-informed care and states that all people, regardless of subtle or obvious cognitive impairment, should be treated at every level of care for substance use disorder. He commented on the current opportunity to increase the understanding of brain injury and its behavioral implications within the community system.

Medical School Curriculum

Reisher commented that more information about brain injuries should be included in education for medical students. She shared her surprise at being asked to speak about brain injury at a webinar for medical professionals, given her expectation that medical professionals would already be well informed about brain injury. Presenting prevalence data on risk

groups, she encouraged the webinar attendees to be particularly mindful that patients who have experienced domestic violence, homelessness, or detainment in the criminal justice system are at a high risk for having sustained a brain injury. Corrigan noted discussions with the U.S. Medical Licensing Examination organization about the content of the exam in regard to brain injury. He was informed that exam questions about brain injury are limited to examples of concussion and do not include more severe brain injury. James Kelly, professor of neurology at the University of Colorado School of Medicine, stated that during the Barack Obama presidential administration, Michelle Obama and Jill Biden launched the Joining Forces initiative to better meet the needs of service members and veterans. That initiative convened approximately 60 deans of medical schools to discuss areas including improved training for TBI treatment. Despite voiced commitments to modifying the curriculum to better address TBI, limited changes have been made.

Similarly, a group of representatives from the Association of American Medical Colleges, the American Medical Association, and the American Nurses Association gathered under the auspices of the Joining Forces initiative. Meeting monthly for over a year, the group made commitments to influence curriculum change to better address brain injury within the education for their various specialty areas. However, the traction of this effort appears to have been lost, said Kelly.

Rural Considerations

Reisher underscored the difficulty of accessing brain injury–specific care in a rural state such as Nebraska. Only one neuropsychologist who understands brain injury practices within an area comprising approximately two-thirds of the state. This makes obtaining a neuropsychological assessment challenging. She expressed hope that access to telemedicine will help to close this gap in the future. Noting that services are often more limited in rural versus metro areas, she emphasized that capacity building is needed in all locations to effectively meet the needs of individuals with brain injury.

WORKSHOP WRAP-UP

Corinne Peek-Asa, vice chancellor for research at the University of California, San Diego, recapped how the workshop featured an exploration of multiple levels and elements involved in developing a learning health system (LHS). Opening with the lived experience of Lindsay Simpson, cofounder of the Champion Comeback Foundation, the workshop moved from the individual patient experience to opportunities to pilot test and then to quickly scale and translate findings into improved treatment for patients.

In her talk, Simpson described contending with the effects of TBI and the challenges and barriers she has encountered in accessing effective treatment. Giving a charge to the audience to address some of these barriers, Peek-Asa noted that innovation is a pathway to accelerate solutions to patient problems, and the workshop showcased examples of feasible, low-cost methods of introducing innovation to processes. She emphasized that LHSs should center on patient needs and opportunities.

Communication systems should routinely be built into practice to facilitate smoother patient navigation experiences, increase caregiver engagement, and foster collaboration with primary care and other providers, Peek-Asa continued, emphasizing that core LHS principles provide guidance in improving systems and aligning continuous improvement areas. Speakers during the workshop discussed change efforts ranging in scale from large federal initiatives to modifying a health system’s electronic health record. Sessions explored the roles of payer engagement and culture change in establishing sustainable improvements in treatment and care delivery.

Illustrative examples of LHS activity described during the workshop demonstrated how partnership, integration, translation, capacity, and scaling enable accelerated problem solving, Peek-Asa said. Surveillance can inform the understanding of TBI burden, trends, and risk factors, and a multilevel LHS can bolster health equity and health justice by ensuring that every decision moves toward better care, better prevention, better treatment, and better recovery for all, she said. Donald Berwick, president emeritus and senior fellow of the Institute for Healthcare Improvement, closed by spotlighting the importance of and movement toward cooperation evident in the TBI field’s willingness to work together to improve care and outcomes for individuals with TBI.