On November 22, 2024, the Spaulding-Harvard Traumatic Brain Injury Model System (SH-TBIMS) will host a pivotal virtual summit, "Improving Access to Post-Acute Care for People with Severe Traumatic Brain Injury: A Call to Action." This summit will bring together leaders in healthcare, research, and policy to address critical gaps in access to rehabilitation for people with severe TBI and work toward solutions for equitable care.
Summit Highlights
The SH-TBIMS Summit will spotlight:
- The State of the Science in TBI Recovery: Reviewing current research on recovery and outcome after severe TBI.
- Barriers to Care: Examining policies, like the “three-hour rule,” that limit access to inpatient rehabilitation, especially for individuals with disorders of consciousness.
- Pathways to Change: Showcasing effective partnerships and advocating for policy adjustments to increase rehabilitation access and improve long-term outcomes.
Why It Matters
Currently, fewer than 15% of individuals with severe TBI receive vital inpatient rehabilitation, often due to policy restrictions that inadvertently exclude those with the highest needs. The summit aims to foster dialogue and action toward health equity, ensuring that all individuals with TBI have a pathway to recovery. We hope to engage diverse participants, including representatives from federal and state healthcare funding agencies, commercial insurance companies, research funding agencies, legislative committees, consumer advocacy groups, academic institutions, and professional organizations.
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Complmentary Event
Leavitt Partners will host a follow-up virtual workshop on December 4, 2024. This session will delve deeper into the “three-hour rule,” its impact on care access, and evidence-based alternatives to better serve the TBI community.
Learn More & Register.
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PODCAST: Becoming an Advocate & Ally for the Burn Community with Diana Tenney
Girls with Grafts
In this podcast episode, Diana Tenney joins the Girls with Grafts hosts to discuss research, advocacy, and helping other survivors. Diana shares how she got involved with research, sheds light on common survivor struggles with nutrition, and opens up about overcoming addiction.
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Spaulding Grand Rounds
We are proud to highlight two recent Grand Rounds given at Spaulding Rehabilitation.
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From ROCS Collaborator Geoffrey Anderson, MD, MPH
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From Andrea L. Pusic, MD, MHS, MGB PROMs Program Director
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WEBINAR
The Insurance Maze: Navigating Coverage After Life-Changing Injury and Illness
Missed the webinar? Watch the recording in which we explored challenges with coverage after life-changing injuries and illness. Presenters used case studies and real-life examples to illustrate successful strategies for navigating insurance challenges in the context of the journey after initial hospitalization.
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The Power of Patient Centered Outcomes in Rehabilitation Learning Health Systems
Learning Health Systems Rehabilitation Research Network (LeaRRn)
This Summit in September focused on the science and practice of using patient-centered outcomes in Learning Health Systems, and was well-attended by ROCS faculty and friends. The first day of the Summit included sessions on: 1) Selecting Patient Centered Outcome Measures 2) Capturing Standardized Patient Centered Outcome Measures 3) Accessing Data: Building Data Infrastructure and 4) Analyzing Outcomes Data. The second day of the Summit included a session on Utilizing Data to Inform Care followed by separate breakout groups for in-person attendees to discuss the state of the science and practice, challenges and facilitators, and next steps to move forward.
Don't miss the recording of ROCS' Director of Advocacy & Policy, Chloe Slocum, MD, PhD, who spoke about balancing stakeholder needs (the 3rd presentation on Day 1).
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Groundbreaking Findings in Brain Injury | |
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by Sanders, et. al.
A new study published in the Journal of Neurotrauma found that among patients with traumatic brain injury (TBI) who died due to withdrawal of life-sustaining treatment (WLST, e.g., removal of the breathing tube) 45% may have survived; and among survivors, approximately 30% may have recovered at least partial independence by 6-months.
Senior author Yelena Bodien, PhD and coauthors, including ROCS Co-Director Joseph Giacino, PhD compared patients with acute TBI who died after WLST to those with acute TBI for whom life-sustaining treatments were not withdrawn. They cautioned that although many patients with TBI who died due to WLST may have died even if life-sustaining treatments were continued, a substantial proportion may have survived and recovered independence, just months after injury.
“Our results support recent calls for a cautionary approach toward early WLST after acute TBI and suggest that a lifetime in a vegetative state or with lower severe disability is not a common outcome, even after a very serious injury,” stated the investigators.
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by Bodien, et. al.
Patients with brain injury who are unresponsive to commands may perform cognitive tasks that are detected on functional magnetic resonance imaging (fMRI) and electroencephalography (EEG). This phenomenon, known as cognitive motor dissociation, has not been systematically studied in a large cohort of persons with disorders of consciousness.
In this study published in the New England Journal of Medicine, conducted at six international centers, researchers including Spaulding's Yelena Bodien, PhD, and ROCS Co-Director Joseph Giacino, PhD, collected clinical, behavioral, and task-based fMRI and EEG data from of 353 adults with disorders of consciousness.
Approximately one in four participants without an observable response to commands performed a cognitive task on fMRI or EEG as compared with one in three participants with an observable response to commands. Results indicate that cognitive motor dissociation is more common than previously realized.
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Jennifer Oshita, CCC-SLP PhD, is a post-doctoral fellow at NYU Langone Health Grossman School of Medicine, Department of Rehabilitation Medicine and a speech and language pathologist. Her research interests lie in improving healthcare quality for people with disabilities at a systems level, including those with intersectional disability and minority identities.
As a LeaRRn Scholar, Dr. Oshita will be mentored by Mary Slavin, PT, PhD and partnering with Chloe Slocum, MD, MPH. She will measure implementation of screening for health-related social needs (HRSN) in the inpatient rehabilitation setting at Spaulding Charlestown and Cape Cod.
HRSN are unmet, adverse social conditions contributing to poor health outcomes. Specifically, Dr. Oshita will examine the reach and adoption of HRSN screening at Spaulding, identify how HRSN are being used to improve patient care, and address determinants to screening. She will also explore patient and family member perspectives regarding the integration of HRSN data into their rehabilitation care, with particular focus on accommodating individual disabilities. This work is expected to identify the unique aspects of collecting and applying HRSN in the Spaulding Rehabilitation Network, enabling proactive targeting of access and accommodation needs to optimize patient rehabilitation and health outcomes.
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Fenan Rassu, PhD, PMR is a licensed clinical psychologist and assistant professor in the Department of Physical Medicine & Rehabilitation at the Johns Hopkins School of Medicine. Dr. Rassu’s research focuses on investigating the relationships between psychosocial determinants of pain, related disability, and utilization of evidence-based treatments for adults living with chronic pain.
As a LeaRRn Scholar, Dr. Rassu will be mentored by Mary Slavin, PT, PhD, and partner with Daniel Daneshvar, MD, PhD, and Zacharia Isaac, MD and Daniel Barron, MD, PhD from the Division of Spine Care and Pain Management. The primary aim of Dr. Rassu’s project is to conduct semi-structured interviews with rehabilitation care providers to identify barriers and facilitators to the use of patient-reported outcome measures (PROMs) and related data in clinical decision-making. The insights gained from this qualitative study will lay the foundation for future efforts to improve the integration of PROMs in rehabilitation care, ultimately enhancing patient outcomes and quality of care.
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Our 2023-2024 Scholars, Emily Evans PT, PhD and Alison Cogan PhD, OTR/L are approaching the end of their year. Dr. Cogan has been working on the creation of a dashboard to visualize assessment data from electronic health records to support clinical decision making and communication for patients enrolled in Spaulding’s Disorders of Consciousness program. Dr. Evans has been working to leverage data housed in the facility’s Electronic Health Record to learn from and inform current practice through data extraction and analysis. The project will focus on consistently collected functional outcome measures and a recently implemented high-intensity gait training program.
...and a congratulations to Dr. Cogan who was honored at the 2024 ACRM Conference with the Deborah L. Wilkerson Early Career Award supported by CARF International. This award recognizes the significant contributions he has made to rehabilitation research during her early career work.
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Updates from the TRAIL Trauma Survivorship Clinic | |
Clinic Awarded Funds to Add a Substance Use Disorder Recovery Coach
The TRAIL Clinic was one of two awardees of the 2024 McGraw Innovator Awards from the Program in Opiod and Pain Innovation. Having opioid counselors with the multi-disciplinary TRAIL team will reduce barriers to care such as transportation challenges, difficulty finding childcare, and taking time off from work. This is critical in establishing care and immediately connecting patients to appropriate resources.
Scenes from the TRAIL Reception Event
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Annual Conference of the American Congress of Rehabilitation Medicine (ACRM)
ROCS and Model Systems Friends attended and presented at the 2024 Annual Conference in Dallas, TX.
Select Presentations & Posters
- Building Capacity for Learning Health Systems Research in Rehabilitation: Turning Practice Data into Knowledge (Cogan, Evans, Slavin, Green, Hansen, Zalanowski, Krisko)
- The Diagnosis of Traumatic Brain Injury Using Biomarkers and Emerging Technologies (Daneshvar)
- Motor Neuron Disease Following Repetitive Traumatic Brain Injury (Daneshvar)
- Dementia Prevention 2024 Session (Daneshvar)
- Advancing Equity in TBI Rehabilitation Research: A Call to Action (Evans)
- Whose Outcome Is It Anyway? A Person-centered Approach to Conceptualizing Outcome After Severe TBI (Pier, Filloramo, Giacino, Bodien)
- Trajectory of Functional Outcome up to 9 Years After Severe TBI: A TRACK-TBI Study (Pier, Bodien, Giacino)
- Development of a Short Form Telephone-based Interview for Caregivers to Monitor Patient Outcome After Severe Brain Injury (Sterling, Bodien, O'Neil-Pirozzi, Giacinio, Ni, Kazis)
- A National Institute of Neurological Disorders and Stroke (NINDS) Project: Traumatic Brain Injury v3.0 Clinical Common Data Element Recommendations (Giacino)
- Participation, Life Satisfaction, and Psychosocial Health Dissociate with Level of Disability: A Traumatic Brain Injury Model System Study (Golden, O'Neil-Pirozzi, Giacino, Bodien)
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Advancing Burn Survivor Care: Insights on Quality of Life at Taiwan Symposium
Lewis Kazis, ScD, ROCS Director of Research, was invited as a “Distinguished Lecturer” at the 2024 Annual International Meeting and Symposium of the Taiwan Society for Burn Injuries and Wound Healing, held in September in Taichung, Taiwan. His lecture, titled “Quality of Life in Burn Survivors: Development and Application of Patient-Reported Outcomes in Clinical Practice,” provided a historical overview of the Life Impact Burn Recovery Evaluation (LIBRE) Profile. Dr. Kazis highlighted its development and use as a Computer Adaptive Test (CAT) for assessing quality of life in burn survivors.
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Balance Impairments in the Burn Population
Edward Santos, BS Research Coordinator at the Boston-Harvard Burn Injury Model System (BHBIMS), was awarded the Outstanding Burn Research Poster Award at Spaulding Rehabilitation Hospital's PM&R Research & Education Day. His award-winning poster, "Balance Impairment in the Burn Population: A Burn Model System National Database Study," highlights significant findings on balance challenges faced by burn survivors, offering insights that can guide more effective rehabilitation strategies.
READ THE ARTICLE
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Mass General Brigham Clinical Research Day | |
Trajectory of Functional Outcome Up to 9 Years After Severe TBI: a TRACK-TBI Study
Research coordinator Ellyn Pier, MPH presented data from the TRACK-TBI study, focusing on participants with severe traumatic brain injury (sTBI) who were followed at 6 or 12 months post-injury, and up to three additional times over a 9-year period. The findings revealed that most individuals with sTBI experience changes in functional status in the years post-injury. Notably, for those who do show changes after 2 years post-injury, improvement is more common than decline. These results are important to consider when setting goals of care during acute hospitalization.
VIEW THE POSTER
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REsource Support To Optimize REcovery (RESTORE) in the Burn Population; An Overview of Progress and Future Directions
Renee Noordzij is a medical student involved in conducting the multi-year REsources To Optimize Recovery (RESTORE) study with the Boston-Harvard Burn Model System. She presented a poster focusing on the progress made in the study so far, as well as future directions. Currently, they have conducted a scoping review and a document study for the RESTORE project, both of which focus on the resources currently available for burn survivors as they transition from acute care to living in their communities after burn injury. Renee is currently conducting interviews and focus groups with burn survivors and burn care providers as the next stage of the project, with RESTORE ultimately culminating in a Delphi consensus conference to create deliverable guidelines for burn clinics.
VIEW THE POSTER
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Introducing Our New Managers! | |
Burn Injury Model Systems
Since joining the BHBIMS team as a post-doctoral research fellow in 2021 Dr. Huan Deng, PhD, is a familiar face around Spaulding. Recently she has taken on the new mantle of program manager for the lab. Huan has a training background in occupational therapy with experience working with burn patients and completed her PhD study with a focus on hypertrophic scar after burn injury.
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Traumatic Brain Injury Model Systems
A warm welcome to Lotanna Dike, MPH, as the new program manager of the Neurorehabilitation Lab at Spaulding. Lotanna has experience leading impactful health research projects from start to finish. With expertise in managing complex, multicenter studies, she excels at streamlining operations, fostering collaboration, and delivering insights that drive healthcare advancements. Her work has contributed to publications on infectious diseases, simulation modeling, and implementation science. Outside of work, Lotanna enjoys reading, scenic car rides, and fun shows!"
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by Worobey, et. al.
The high percentage of uncompleted wheelchair repairs poses a significant risk to users, and this risk is compounded by prolonged time taken by vendors to address breakdowns. Unsatisfactory vendor service was common, with a significantly larger proportion of participants experiencing consequences for repairs that required a vendor. This seems to indicate structural inadequacies within the repair process and the need for interventions to address these issues.
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by Tierney-Hendricks, et.al.
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by Nowinski, et. al.
A new concussion sign identified by Mass General Brigham and Concussion Legacy Foundation scientists could identify up to 33% of undiagnosed concussions. Dolphins QB Tua Tagovailoa displayed a Spontaneous Headshake After a Kinematic Event (SHAAKE) after controversial undiagnosed concussion in 2022, according to a publication with senior author and ROCS Director of Training, Daniel Daneshvar, MD, PhD.
IN THE NEWS
CNN | CBS | BBC
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Senator Warren Hosts Forum with Spaulding Rehabilitation and Home Base Program to Spotlight Blast Overpressure Injuries
As part of ongoing efforts to highlight the critical need to advance the care and research of traumatic brain injuries and possible connections to overpressure blast injuries, Senator Elizabeth Warren (D-Mass.) hosted a forum at Spaulding Rehabilitation in Charlestown in collaboration with the Home Base Program.
The public forum welcomed from the Department of Defense Kathy Lee, Director of Warfighter Brain Health Policy; Dr. David Smith, Deputy Assistant Secretary of Defense for Health Readiness Policy and Oversight; Dr. Ross Zafonte, President of Spaulding Rehabilitation and Chief of Traumatic Brain Injury; and Health & Wellness for Home Base and veteran with 22 years in the US Army and Home Base participant Dennis Hernandez.
WATCH THE RECORDING
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CoHSTAR, LeaRRn, and AOTF invite rehabilitation researchers with an interest in implementation science and/or health services research to submit an application to participate in WISH 2025, the third iteration of this intensive grant writing workshop. WISH is open to rehabilitation researchers from any profession and will be held in person in Alexandria, VA from May 20-22, 2025. Applications are due January 6, 2025.
APPLY NOW
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7th Annual Stepping Strong Trauma Research and Innovation Symposium
The Gillian Reny Stepping Strong Center for Trauma Innovation
The 7th Annual Stepping Strong Trauma Research and Innovation Symposium, being held on November 14, 2024, at Brigham and Women’s Hospital and virtually. This year’s theme, Transforming Trauma Care: Paving the Road Ahead, focuses on the future of trauma care through each stage of prevention, treatment and recovery.
All are welcome to attend, with special encouragement for researchers and clinical leaders from fields such as trauma, emergency medicine, reconstruction, plastic and orthopaedic surgery, vascular, bioengineering, injury prevention, basic science, public health, policy, and community-based organizations.
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LOCATION
Virtual
or
Brigham & Women's Hospital
60 Fenwood Road Boston, MA 02115
DATE
November 14, 2024
12PM - 1PM
COST
Free
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Life After Stroke: Treatment and Recovery Strategies
Brain Injury Association of America
This virtual symposium on stroke provides a focus on three potential after-effects of stroke, associated treatment and rehabilitation approaches, and strategies for family caregivers. Attendees will gain valuable insights into various aspects of stroke care, equipping them with knowledge and resources to support stroke survivors and their families.
Learning Objectives:
- Increase awareness and understanding of the potential effects of stroke.
- Explore effective treatment approaches and rehabilitation strategies for stroke survivors.
- Provide tools and resources for family caregivers to support stroke survivors in their recovery journey.
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LOCATION
Virtual
DATE
November 22, 2024
12PM - 4PM
COST
Professionals: $50 (includes up to 4 ACBIS CEUs)
Survivors/Family Members: Free
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Medicare Basics
MedPAC
The Medicare Payment Advisory Commission (MedPAC), an organization designed to advise congress on Medicare issues, released its 2024 Medicare Payment Basics. Payment Basics is a series of brief overviews of how Medicare’s payment systems function.
The Commission produces Payment Basics as a resource for policymakers and others to better understand how Medicare pays for health care services. Each document is under five pages and includes clear diagrams for easy reference.
READ THE MEDICARE PAYMENT BASICS
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Learning Health Systems Rehabilitation Research Network (LeaRRn)
Applied LeaRRning Cases spotlight real-world applications of Learning Health Systems (LHS) research competencies by rehabilitation researchers. Each case offers an in-depth look at how these experts apply LHS principles to drive innovation and improvement in rehabilitation practice. Organized by key LHS competency domains, each Applied LeaRRning Case includes:
- Case Overview
- Presentation Video
- Curated Resources to deepen understanding
- Links to the LeaRRn Resource Database
EXPLORE THE CASE STUDIES
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The U.S. Department of Transportation (DOT) announced a $50 million penalty against American Airlines (American) for numerous serious violations of the laws protecting airline passengers with disabilities between 2019 and 2023. DOT’s investigation into American Airlines uncovered cases of unsafe physical assistance that at times resulted in injuries and undignified treatment of wheelchair users, in addition to repeated failures to provide prompt wheelchair assistance.
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Screening and Interventions for Social Risk Factors
This report from the US Preventive Services Task Force (USPSTF) identifies how social risks have been considered in the USPSTF recommendation statements and provides a foundation for ongoing work to ensure that health equity and social risks are incorporated in USPSTF methods and recommendations.
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New mental health parity laws are already under threat: Insurers’ legal threats show the truth behind their lip service
The ink had scarcely dried on new federal rules for enforcement of the Mental Health Parity and Addiction Equity Act of 2008 when U.S. health plans threatened potential legal action to block them.
Buoyed by a recent Supreme Court ruling that shifts power away from federal agencies, health plans apparently hope to keep the departments of Labor, Treasury, and Health and Human Services from making parity a reality, years after Congress passed the law with resounding bipartisan support.
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