The goal of the Traumatic Brain Injury Summit was to bridge the gap between science and policy to improve the lives of thousands of Americans with TBI-related disability. Image: iStock
The goal of the Traumatic Brain Injury Summit was to bridge the gap between science and policy to improve the lives of thousands of Americans with TBI-related disability. Image: iStock
Severe traumatic brain injury (TBI) is one of the most complex and costliest chronic conditions people face in the United States. With thousands of new cases each year and a diverse array of long-term medical, social and financial consequences, patients and their families often find themselves in near-impossible situations.
While there have been significant scientific and clinical advances in understanding and managing this disease, policies governing access to healthcare and insurance coverage have not kept pace.
On May 15-17, the Spaulding-Harvard TBI Model System hosted a first of its kind stakeholder summit inviting thought leaders from across the country in research, clinical care, government, disability law, insurance and advocacy to critically evaluate the current landscape and develop a strategic plan with the goal of enabling a patient-centered model of lifelong care.
“Survivors of severe TBI and their families face enormous challenges in coping with the acute and chronic effects of this condition,” said Joseph Giacino, Harvard Medical School associate professor of physical medicine and rehabilitation at Spaulding Rehabilitation Hospital and director of the summit. “Unfortunately, access to inpatient rehabilitative care and other post-acute services has progressively declined, increasing the risk of medical complications and poor outcome.”
While data on long-term outcome show clear cause for optimism in the prospects for meaningful recovery, existing gaps between scientific evidence, clinical practice and regulatory policies limit access to care and ultimately increase the economic burden to society, said Giacino, who is also program director of the Spaulding-Harvard TBI Model System.
The goals of this summit were to bring together key stakeholders, identify obstacles to high-quality care and build strategic partnerships that will help improve the lives of people with TBI and their families, Giacino said.
Held over two days at the United States Access Board in Washington, D.C., the stakeholder summit, entitled “Rehabilitation Access and Outcome After Severe Traumatic Brain Injury,” welcomed participants from leading brain injury rehabilitation providers including Spaulding, Craig Hospital, MossRehab, Ohio State University Wexner Medical Center, Shepherd Center, TIRR Memorial Hermann Hospital and the Rehabilitation Hospital of Indiana.
In addition, representatives from the following federal agencies participated: the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR); National Center for Medical Rehabilitation Research; National Institute of Neurological Disorders and Stroke; Center for Medicare and Medicaid Services; Centers for Disease Control and Prevention; Defense and Veterans Brain Injury Center; and the U.S. Department of Veterans Affairs.
Designees from the American Congress of Rehabilitation Medicine, American Academy of Neurology and the Brain Injury Association of America also participated.
Before engaging in workgroup discussions designed to identify barriers impeding access to care, experts from leading academic institutions including the University of Kansas, the University of California San Francisco, Harvard Medical School, Ohio State University, Albert Einstein College of Medicine, University of Southern California, George Washington University and Weill Cornell Medical College reviewed recent scientific evidence regarding recovery from severe TBI, discussed problems associated with prevailing healthcare models and considered novel approaches intended to improve functional outcome while maintaining cost effectiveness.
Personal perspectives on the state of TBI care in the U.S. were provided by Scott Hamilton, a severe brain injury survivor, and retired Gen. Peter Chiarelli, former Vice Chief of Staff of the U.S. Army, and the CEO of One Mind, a nonprofit organization dedicated to promoting open science for the benefit of those with brain illness and injury.
During the second day of the summit, the workgroups developed strategic initiatives designed to enable more favorable outcomes for persons with severe TBI and their families.
Participants said they felt inspired, energized and enthusiastic at the end of the summit.
“I’m confident the connections made at this summit and strategies created can steer us down a road to collectively make meaningful improvements to health care delivery in this country for this highly vulnerable population,” said Giacino in his closing remarks.
Funding for the summit was provided by a grant from NIDILRR and the Harvard Medical School Department of Physical Medicine and Rehabilitation at Spaulding Hospital.
Presentation slides and more information on the summit visit are available here.
