By Herb Drill
We’re all pretty much acquainted with a PIN: a Personal Identification Number. Soon, more veterans and others with traumatic brain injuries (TBI), their families, caregivers, and medical professionals could know about BIN: the Brain Injury Navigator.
BIN is a one-stop, Web-based information resource to meet the information needs of those of all ages with a TBI, their families, and their caregivers across the rehabilitation landscape.
The Need for BIN
At least 3.17 million Americans live with a TBI, with 1.4 million new cases diagnosed each year, according to JBS International, Inc., a Maryland- based management and information technology firm that works with public and private entities on projects related to health, education and other social issues. TBI results from a blow or injury to the head that disrupts normal brain function. TBI severity may range from “mild” (brief change in mental status/ consciousness) to “severe” (extended unconsciousness or amnesia after the injury). BIN addresses the needs of those with “co-occurring disability”—i.e., anyone with a TBI and another disorder, such as a spinal cord injury (SCI).
JBS is developing BIN in its Traumatic Brain Injury-Resource Optimization Center (TBI-ROC). At the World Congress on Disabilities & Expo (WCD) in Jacksonville, Florida, I spoke with Eileen Elias and Raphael Gaeta, respectively program director and policy associate for TBI-ROC. Founded in 1985 and based in North Bethesda, Maryland, with branches in Burlingame, California; Olympia, Washington; and Vienna, Virginia, JBS is best known for creating online information services.
The need for BIN, Gaeta states, arises from the “clinical and emotional repercussions of TBI” on those who live with it; “their need for sustained, multidimensional services and support,” and the challenges they face “navigating an often-fragmented service system.” Despite the capabilities of current technology, Gaeta says, “No comparable Web-based tool exists that provides comprehensive education, payer, and evidence- based information about TBI, or that identifies and locates needed rehabilitation services.”
BIN’s target population is increasing, he adds, and “so is the need for investment in technologies like the BIN that can [join] the needs of patients and the resources in their communities.”
Correlation Between TBI and SCI
Elias and Gaeta note studies that suggest a link between traumatic SCI and TBI. “The rate of co-occurring TBI and SCI in the published studies ranges up to 59%,” depending on the study. A common finding is that TBI “often goes undiagnosed in the presence of SCI.” This “oversight in care” may account for “some rehabilitation failures” for those with SCI. While SCI treatment requires intensive rehabilitation as to daily living, communication, and vocational skills, “additional consideration of the intervening emotional and cognitive affects of evident or possible TBI is needed to enhance SCI rehabilitation efforts.”
TBI-ROC, Elias says, offers products and services to “address the fragmentation and service gaps” which exist across the U.S. TBI rehabilitation experience. The advisory group guides TBI-ROC members, who are interdisciplinary experts from corporations, academia, health centers, foundations, disability and TBI-specific advocacy groups, trade organizations, the media, assistive technology experts, funds development specialists, public health experts, providers, and individuals with a TBI. The TRIROC mission is to “support military members and civilians with TBI and their families by developing and strengthening service systems, policies, and products.”
The advisors and designated committees monitor BIN’s continuous quality information program and ensure that BIN’s content is up-to-date and meets user needs, Elias adds.
The BIN is designed as a solution-oriented tool to help those with TBI overcome challenges that arise from the traditional fragmentation and gaps across the TBI continuum of care.
Elias says TBI case management “should begin as close to the time of injury as possible” and cover all phases of care, as it’s “essential to address service gaps and maintaining optimal rehabilitation outcomes.”
A TBI Rehab Model
Typically, Gaeta asserts, a wounded service member with a TBI hits gaps in rehab, “particularly when trying to access expertise” in the brain injury field “unavailable” in the U.S. Department of Defense or VA, and “in provision of long-term rehab services.” The problem is “fragmentation of current TBI rehab, inconsistent availability, and continuity” of case management; services; inconsistent adoption of standards-based treatment guidelines and evidence- based best practices, plus health information technology tools without TBI specialization.”
“Family members, caregivers, and service members need knowledge on TBI and SCI medical and rehab processes, and legal protections,” Gaeta urges. “There’s no one electronic and print DoD, VA, or civilian brain injury resource or service directory which includes accreditation or certification information.”
Elias and Gaeta present a model TBI rehab process as a pathway along which a service member with a brain injury can reach optimal recovery over a typical five-to eight year plan. Mapping this individually-appropriate pathway requires a “nation-based, sophisticated TBI service locater tool/ navigator which doesn’t exist.”
To fill this gap, they say, BIN has these components:
- Service Locator, which yields a “complete listing of relevant services; details each service set by individual needs.”
- Education tools to understand the structure/content of the Service Locator and TBI issues.
- Evidence-based practices adjusted to the rehab stage and service type, explaining how the practices are defined, collected, and incorporated into the Service Locator.
- Electronic Care Coordinator, a secure and confidential, personally controlled account of service, education, and evidenced-based practice data gathered by a BIN user and updated automatically.
- E-Help Desk for when the patient/ caregiver has explored BIN’s data and has questions; they’ll have the option to discuss issues by e-mail and/or phone from 8:00 a.m. to 8:00 p.m. (ET), seven days a week.
- Public/Private Payers identification/description on a state-by-state basis— e.g., Medicare and workers’ compensation. Payer’s individual policies, specific definitions of TBI, and function are elaborated.
With BIN, Gaeta adds, there’s an internal query of the BIN database and an external query of Web sources. That generates findings and results: names of facilities, addresses, contact persons, contact data, information about accreditation and certification, and options for services for the long-term rehab plan. Elias and Gaeta note that the entire report, or selected data, can be put into the Electronic Care Coordinator.
They explain that the BIN is a “catalyst for future rehabilitation service coordination” across the U.S. It can “reinforce links” in the diagnosis and treatment process because it “enhances communication and collaboration” between those with TBI and/or SCI and the many medical providers.
Initially, JBS funded BIN prototype development for three states, and is now seeking organizations to partner with in the development of a nationwide version.
The BIN gives users tools for “coordinating care across traditionally segmented medical and social service fields and throughout the lifespan of treatment” for SCI and TBI injuries. This means, Elias asserts, those with “co-occurring SCI and TBI injuries will have immediate access” to data resources and tools for coordinating care for the rehabilitation plan to “achieve optimal recovery and reintegration.”
In his wheelchair in Jacksonville, Florida, career journalist Herb Drill heads Able Me & Associates. His e-mail address is herbdrill@ableme.com. He has Muscular Dystrophy.
