(Washington, DC)- 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. Despite significant scientific and clinical advances in understanding and managing this disease, policies governing access to healthcare and insurance coverage have not kept pace. The Spaulding-Harvard TBI Model System hosted a first of its kind stakeholder summit May 15 through May 17 in Washington, DC, 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 to enable 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. Unfortunately, access to inpatient rehabilitative care and other post-acute services has progressively declined, increasing the risk of medical complications and poor outcome. Although new 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. The primary goals of this summit are to bring together key stakeholders to identify obstacles to high-quality care and establish strategic partnerships aimed at improving the lives of these individuals and their families who are in desperate need of our support,” said Joseph T. Giacino, PhD, Summit Director and Project Director Spaulding-Harvard TBI Model System.


 Dr. Manley presenting
 Geoffrey Manley, MD, PhD, of University of California San Francisco, speaks at the summit.

Held over two days at the United States Access Board in Washington DC, the Stakeholder Summit entitled, “Rehabilitation Access and Outcome After Severe Traumatic Brain Injury” welcomed participants from top-ranked brain injury rehabilitation providers including Spaulding Rehabilitation Hospital, 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 federal agencies including the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR), National Center for Medical Rehabilitation Research, National Institute on 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 participated. Designees from the American Congress of Rehabilitation Medicine, American Academy of Neurology and the Brain Injury Association of America, Inc. also participated.

The primary goals of this summit are to bring together key stakeholders to identify obstacles to high-quality care and establish strategic partnerships aimed at improving the lives of these individuals and their families who are in desperate need of our support

Joseph T. Giacino, PhD Summit Director and Project Director Spaulding-Harvard TBI Model System

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Before engaging in workgroup discussions designed to identify barriers impeding access to care, experts from leading academic institutions including Kansas University, the University of California at San Francisco, Harvard Medical School, Ohio State University, Albert Einstein School 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 Mr. Scott Hamilton, a severe brain injury survivor, and General Peter Chiarelli (Ret.), former Vice-Chief of Staff of the U.S. Army and the CEO of One Mind, a non-profit 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. “The goal was to bring together the best and brightest from across the spectrum of TBI care to offer diverse and novel ideas to the discussion. The challenges can seem almost overwhelming but still pale in comparison to the ones survivors and families face every day. I’m confident the connections made at this summit and strategies created can steer us down a road to collectively make meaningful improvements to healthcare 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.