Winter 2024

FEATURED STORY

ROCS Celebrates 2 Years:

A Letter from the Directors

Two years ago this February, a message went out announcing the launch of the Rehabilitation Outcomes Center at Spaulding (ROCS). The center was founded on the work of researchers, clinicians, advocates, and impassioned community members; catalyzed by the science of rehabilitation and stories of facing adversity. In these two years, we have made good strides.


We have grown our community through this newsletter, social events, the Finding Strength podcast, and a biweekly ROCS Open Scientific Meeting, a platform for people to share and collaborate on their efforts towards better outcomes for those we serve. It is that pursuit of better that draws us together.


Thanks to our expanding network, we have helped to amplify voices around issues like wheelchair repair protections and the NIH designation of people with disabilities as a population with health disparities. Yet with barriers to access, disproportionate research funding allocations, and inequitable outcomes for people with disabilities, much remains to be done.


The driving force behind ROCS is our dedicated troupe of research faculty. Some research highlights from the past two years have included:

  • the dissemination and translation into multiple languages of a social participation assessment tool for burn survivors, the LIBRE (Life Impact Burn Recovery Evaluation) Profile. The LIBRE is the first of its kind instrument focused on the social impacts of burn injury. 
  • We received funding from the MGB Springboard Studio and the Gillian Reny Stepping Strong Center to pilot an interdisciplinary, holistic, longitudinal trauma clinic in collaboration with the Center for Surgery and Public Health at Brigham and Women’s hospital. The TRAIL Clinic (Transforming Recovery After Injury for the Long-term) is set to launch this spring.
  • The Coma Recovery Scale - Revised, a seminal assessment in the evaluation of Disorders of Consciousness (DoC), was adapted and validated for use as the CRS-R FAST in the intensive care unit, where families are desperately in need of objective measures of progress. 
  • This year, ROCS will be administering a new funding opportunity, the Innovative Treatments in Disorders of Consciousness (ITDC) program, to generate and initiate disruptive ideas in the treatment of patients with DoC and other “slow-to-recover” brain injuries, thanks to a gift from a generous donor.
  • Using big data to understand cause and effect of head injuries, we learned that chronic traumatic encephalopathy (CTE), a deadly neurodegenerative disease, is a result of collective hits to the head over time, better equipping us to protect our brains while engaging in the activities we love.
  • Our three Model Systems programs in burn injury, traumatic brain injury, and spinal cord injury have continued to thrive. Each day we contribute to the national, longitudinal data centers that help us understand the lifelong nature of these events.


Our faculty perform this critical work in tandem with mentorship and training. Blossoming partnerships with the MGH Institute of Health Professions and the multi-institutional Learning Health Systems Rehabilitation Research Network (LeaRRn) have created opportunities for future generations of rehabilitation scientists to grow in our vibrant academic, patient-centered community. We established Spaulding Rehabilitation as a LeaRRn ‘Health System Partner’, hosting scholars to move the needle towards a Learning Health System: embedding discovery and data into routine clinical care, together with people with lived experience. Our work with LeaRRn has grown into a larger collaboration with a new 5-year, AHRQ and PCORI-funded center, LeaHD (Learning Health systems training to improve Disability and chronic condition care), in which Spaulding will host scientists focused on rehabilitation and long-term services and supports for persons with disability and chronic conditions.


Life-changing disability is a reality for all of us. In the years ahead, we must forge relationships, both with those who are like and unalike ourselves. We must listen to each other with empathy and empower those who live with disability. We must educate ourselves on the systems within which we operate, so that we might compel change. And we must do so with love and compassion.


In that spirit, please take a minute to watch the below video of a dance performance choreographed by one of our research staff, Ally Sterling, inspired by one of our podcast guests, Tracey Macarty. 


With gratitude,

The Rehabilitation Outcomes Center at Spaulding

Jeffrey Schneider, Co-Director

Joseph T. Giacino, Co-Director

Dan Daneshvar, Director of Training

Lewis Kazis, Director of Research

Mary Slavin, Director of Dissemination

Chloe Slocum, Director of Health Policy & Advocacy

Shonali Gaudino, Administrative Director

A dance performance

Upcoming Events

PODCAST: Which Head Impacts Lead to CTE?


A new season of the Finding Strength podcast begins! In this episode, we welcome back Dr. Dan Daneshvar, who is joined by Lisa McHale to discuss his findings about the cause of chronic traumatic encephalopathy.

Listen Now

LOCATION

Spotify, Apple Podcasts, Google Podcast, iHeart


DATE

Available Now!

Webinar: The Insurance Maze - How to Navigate the System


Thank you to all who voted on the webinar topics! Will be kicking off the summer with a webinar to better understand the world of insurance and a guest panel to get your questions answered!


Have questions you would like to hear covered during the webinar?

Please submit your thoughts in advance at the link below!

Place Your Questions Here!

LOCATION

Virtual

 

DATE

Summer, Date TBD

 

COST

Free

Disability Book Club!


The Disability Employee Inclusion Alliance, one of Mass General Brigham's newest Employee Resource Groups, is hosting a monthly book club. People with disabilities and people without disabilities (allies) are welcome to get involved. Email Anna Dukess to find out about the book club: adukess@mgb.org.

Learn About the ERG

BRAIN INJURY MONTH SPEICAL PODCAST:

A Mother’s Love Builds a Brain Science Movement


A special episode of the Finding Strength podcast will feature two leaders of the Brain Injury advocacy movement: Dr. Mel Glenn and Marilyn Spivack.

Subscribe for Updates

LOCATION

Spotify, Apple Podcasts, Google Podcast, iHeart


DATE

Coming in March

Research

LeaHD Center Funds LHS Scientists at Spaulding


Spaulding Rehabilitation is a member of the new LeaHD Center (Learning Health systems training to improve Disability and chronic condition care), funded by AHRQ and PCORI. LeaHD announces training opportunities for learning health system (LHS) scientists focused on improving care, achieving equity, and reducing disparities for people with disabilities and chronic conditions.


Applicants may be academic faculty members, or individuals employed by a health system or community partner organization in clinical or operational leadership roles, or candidates for postdoctoral fellowships. Available support of up to $150,000 per LHS Scientist. Applications are closed for 2024 but keep an eye out for future cycles.


READ MORE

LIBRE Profile App for Burn Survivors


Work has begun to expand the Life Impact Burn Injury Recovery Evaluation (LIBRE) Profile- an assessment to measure and benchmark social participation in adults following burn injury- into a publicly accessible mobile application. This unique academic, clinical, and community-based collaboration provides the critical next step to translate the LIBRE Profile from a research product into a widely used app that meets the needs and preferences of burn survivors. The app will empower survivors to manage their own recovery and facilitate conversations with their clinicians on social participation outcomes as part of their clinical care. Ultimately, the LIBRE Profile App will serve as a springboard for the advancement and development of evidence-based approaches to enhance social participation among burn survivors and become an integral component of burn injury rehabilitation. This app will contribute to impactful changes in policy and practice to improve the lives of individuals with disabilities.


LEARN ABOUT LIBRE

Implementing Practice Guidelines for Disorders of Consciousness

Led by ROCS Co-Director Joseph Giacino, PhD and PhD candidate Katie Golden, OTD, the goal of this newly funded project is to utilize knowledge translation (KT) principles and procedures to promote use of evidence-based practice guidelines on management of persons with disorders of consciousness (DoC), to improve their health and function and the quality of care they receive and maximize the functional recovery. 


Due to a number of factors, misunderstanding and ethical distress can be common in clinical management of persons with acquired disorders of consciousness. Misdiagnosis is alarmingly high, prognostication imprecise, and life-sustaining treatment is commonly discontinued prematurely. Evidence-based practice guidelines for clinical management of DoC were published in 2018 to address these problems. Despite their clinical importance, systematic investigation of guideline awareness, beliefs and adoption among providers has never been undertaken.

STAFF SPOTLIGHTS

Lucky Number 13!


Diana Tenney and Jerry LaPerriere, two individuals dearly loved by our community, tied the knot this past September surrounded by the love of their family, friends, and fur babies. This long-awaited union (13 Years!) was put on hold in 2010 when Diana’s clothes caught fire during a backyard cleanup and suffered burns on over 90% of her body, and Jerry who tried to extinguish the flames, suffering burns on 10% of his body. At the time, Diana was given a minus-forty percent chance of survival by doctors, with the expectation that survival would lead to a poor quality of life. After 13 months in hospitals, enduring countless surgeries and intensive hours of physical, occupational and speech therapy, Diana was able to go home.


Diana and Jerry have captured their triumphant story of love and life in the book:

God Never Moved: A Couple's Journey Through Fire to Life


"Scarred physically and traumatized emotionally, Diana and Jerry fought, adjusted, and prevailed, not allowing the adversity to destroy them spiritually. It is that strength and optimism that they wish to impart to others by sharing their story, in the hope that it will give assurances to catastrophic accident survivors and their families that they too, like Diana and Jerry, can beat odds of minus-forty percent.”


We wish them the best on their new journey as Mr. and Mrs.!

Purchase "God Never Moved: A Couple's Journey Through Fire to Life"

Research Opportunities

What We're Writing

Thalamic deep brain stimulation in traumatic brain injury: a phase 1, randomized feasibility study


by Nicholas Schiff, Joseph T. Giacino, et. al.

Predicting Functional Dependency in Patients with Disorders of Consciousness: A TBI-Model Systems and TRACK-TBI Study


by Samuel Snider, et.al.

Feasibility and Utility of a Flexible Outcome Assessment Battery for Longitudinal Traumatic Brain Injury Research: A TRACK-TBI Study


by Yelena G. Bodien, et.al.

Barriers and facilitators to outcome measurement and treatment practices in aphasia rehabilitation in the USA: a mixed methods approach using the Theoretical Domains Framework

by Carla Tierney-Hendricks, Megan E. Schliep, & Sofia Vallila-Rohter


Congratulations to our fellow, Dr. Tierney-Hendricks on her final dissertation paper!

“We're Onto Something Here!”: Clinician Perspectives of a Pilot Program to Increase Palliative Care Access in an Urban Skilled Nursing Facility

by Brook Calton, et. al.


Research based at our own Skilled Nursing Facility:

Spaulding Nursing & Therapy Center Brighton

Community

February 4-10: Burn Awareness Week!

Learn More Burn Prevention Tips

March is Brain Injury Awareness Month



The Brain Injury Association of America (BIAA) shares several ideas for how you can get involved this March, including attending Brain Injury Awareness Day on Capitol Hill, March 5-6, 2024, to help us win reauthorization of the Traumatic Brain Injury Act.

Get Involved at BIAA


The Brain Injury Association of Massachusetts is hosting its annual Advocacy Day on February 15th and Annual Conference on March 27-28, 2024.

Register for Events in Massachusetts

SCIboston Winter Social


SCIboston will be holding an in-person winter social. There is no cost to attend. Please bring your family and friends and enjoy an afternoon with the SCIboston Community! All are welcome. RSVP is not required but encouraged as we plan for refreshments and warm beverages. Location is accessible by The Ride and has ample parking. Please RSVP to heidi@sciboston.org and also let us know if you'd like to contribute any refreshments.

LOCATION

Woburn/Stoneham Elks at 295 Washington Street, Woburn, MA

 

DATE

Sunday, February 4, 2024

 

COST

Free

Save the Date

Disability Connections: A Massachusetts Office on Disability Networking Event 


Join the Massachusetts Office on Disability (MOD) for Disability Connections, a networking event for the Massachusetts disability community. Hear about MOD's latest work promoting accessibility across the Commonwealth, and connect with leaders from local and state government, nonprofit disability services, advocacy groups, and all who make up the vibrant Massachusetts disability community.

LOCATION

Mass General Brigham at Assembly Row:

399 Revolution Drive, Somerville

or Virtual

 

DATE

April 10, 2024

10AM - 1PM

Registration Opens in February

 

COST

Free

Tedy's Team Center Names Fellows

MGH Institute of Health Professions


Four faculty members from the MGH Institute of Health Professions have been named Tedy’s Team Research Fellows and have been awarded seed funding from the Institute that they will use to collect pilot data with the goal of using it to apply for external funding to advance their research.


LEARN MORE ABOUT TEDY'S TEAM

Perspectives on Peer Support

Peer mentoring and support groups provide people with the opportunity to talk with others who have been through similar experiences. Support groups and peer mentoring are meant to facilitate healthy coping opportunities through connections with others about common challenges, goals, and achievements.  


The mission of the peer visitation and support group programs at Spaulding is to provide a strong circle of support through an organized effort of outreach to patients who are hospitalized with a new disability diagnosis. Our vision is to meet the emotional and social needs of every patient, providing support, education, encouragement, and connection to individuals of all ages and all abilities to maximize patient outcomes.


All our peer mentors and support group leaders are registered volunteers and go through peer mentor training. Peer mentors provide socialization opportunities for people with newly acquired disabilities, as well as their families and friends. They offer education, support, hope, and coping strategies. Peer mentors provide local and national resources across many topics, they have experience and expertise due to years of lived experience. There are also trained family members who offer separate support groups and peer mentoring for family members of Spaulding patients. Spaulding offers peer mentoring and support groups for patients with burn injuries, spinal cord injury, brain injury, stroke, and limb loss. Some peer mentoring and support groups are provided in conjunction with non-profit 501(c)(3) organizations that are dedicated to supporting and empowering patients and their families so they can rebuild active and engaged lives.  


There are both outpatient and inpatient mentors and support groups which provide opportunity for community members to connect with others living with a disability with an emphasis that patients are not alone in their experiences. They allow space for people to share advice, advocate for themselves and others, provide encouragement and support, and share opportunities. Support groups provide welcoming environment for patients, family members, and caregivers to make connections with peers, find a moment of respite, engage in dialogue, and receive support.  


By David Estrada

destrada@mgb.org

Support Groups | Spaulding Rehabilitation


Brain Injury

Virtual Support Groups | Brain Injury Association of America


Making Connections After Brain Injury: A Guide for Social Peer Mentors | Brain Injury Association of America


For Survivors & Caregivers | Brain Injury Association of Massachusetts


Burn Injury

Virtual Support Group for Burn Survivors | Phoenix Society


Support Others | Phoenix Society


Peer Support | Burn Survivors of New England


Limb Loss

Support Group Network | Amputee Coalition


Certified Peer Visitor Program | Amputee Coalition



Spinal Cord Injury

Support Groups | United Spinal Association


Peer Support Program | United Spinal Association


Support Groups | SCIBOSTON


Peer Mentoring | SCIBOSTON


Stroke

Help and Support | American Stroke Association


Stroke Support Group | Spaulding Rehabilitation

Education & Resources

Massachusetts Senate Passes Wheelchair Warranty Reform


An Act expanding wheelchair warranty protections for consumers with disabilities—S.2541—requires all wheelchairs to come with warranties, extends the minimum warranty period to two years, sets standards for wheelchair repairs and replacements, and eliminates the cumbersome prior authorization process for all wheelchair repairs under $1,000.


READ ABOUT THE BILL

READ ABOUT WHEELCHAIR REPAIR CHALLENGES

What We're Reading

UnitedHealth used secret rules to restrict rehab care for seriously ill Medicare Advantage patients


Health insurance giant UnitedHealth Group used secret rules to restrict access to rehabilitation care requested by specific groups of seriously ill patients, including those who lived in nursing homes or suffered from cognitive impairment, according to internal documents obtained by STAT.


Don't have STAT+ Access? Try one of these related articles: STAT | Medriva

HHS Provides Critical Tools to Help Improve Access for Millions who Receive Medicaid Home and Community-based Services


The U.S. Department of Health and Human Services (HHS) released new guidance focused on building and maintaining worker registries — worker management platforms that make qualified health workers easier to find — so more individuals receiving Medicaid-covered services can receive care in a setting of their choice. The guidance also notes significant federal funding available to help states build these registries thanks to President Biden’s American Rescue Plan (ARP).

Stay in Touch!

By subscribing to any one of our groups, you will always receive our combined newsletters as well as any messages specific to the center where you subscribe.

Website | Rehabilitation Outcomes Center at Spaulding
Subscribe | ROCS
Website | Boston-Harvard Burn Injury Model System
Subscribe | BHBIMS
Website | Spaulding New England Regional Spinal Cord Injury Center
Subscribe | SCI-MS
Website | Spaulding-Harvard Traumatic Brain Injury Model System
Subscribe | TBI-MS
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