Staying Strong:
The Importance of Model Systems Data
What is a Model System?
Model System programs are networks of hospitals and research institutions across the United States that focus on tracking and improving outcomes of people with burn injury, spinal cord injury, and traumatic brain injury. These programs provide clinical care and pool information to conduct innovative and high-quality research intended to improve long term functional, vocational, cognitive, and quality-of-life outcomes. Each Model System program invites newly injured individuals to participate in an ongoing National Database. Data are collected at regular intervals throughout the person's lifespan. This information is used to further the understanding of the long-term consequences of these injuries and to develop improved treatments and systems of care.
Why Should I Participate?
Data provides a powerful tool for research. The large number of cases collected through the Model System programs yield a rich resource that is used for advocacy and improvements in care.
Your continued contributions provide invaluable insight about how these injuries impact people throughout the lifetime.
If you are enrolled in the model systems database study: THANK YOU! Please be sure to respond to requests for follow up interviews. Research using the model systems databases is stronger when every interview is completed.
Spaulding Rehabilitation Network recently announced its Spinal Cord Injury (SCI), Traumatic Brain Injury (TBI) and Burn Injury Rehabilitation Programs have been renewed as Model System sites by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR). Spaulding continues to be the only institution that is home to all three Model System programs at the same time.
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Paving the Path to Wellness
Embrace what comes your way. Please join us for an exciting program for anyone who wants to improve their sense of well-being. Twelve Steps to Optimal Wellness™ is presented by Dr. Beth Frates, Lifestyle Medicine Pioneer, President-Elect of the American College of Lifestyle Medicine, co-author of Lifestyle Medicine Handbook, and it is Winner of Book Authority’s Best Medicine Book of All Time. Every week participants will be provided with exclusive access to on-demand video sessions of Dr. Frates’ Twelve Steps to Optimal Wellness™ presentations. Followed by an in-person discussion with Dr. Frates to dive into the 12-Step plan for wellness.
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LOCATION
Virtual via ZOOM. A link will be sent to you after registration.
DATES
12 p.m. - 1 p.m.
March 14, 21, 28
April 4, 11, 18
COST
$120 for all sessions
Note: Scholarships available, please inquire.
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Coming Soon!
Finding Strength: The Spaulding Rehabilitation Podcast
Stay tuned for our new monthly podcast that brings researchers, people with rehabilitation experience, advocates, and clinicians to the same table to discuss groundbreaking research from Spaulding Rehabilitation.
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LOCATION
Will be available to stream from Apple, Spotify, Google Play and our website.
DATE
First episode launches Monday, March 6
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Letter to the Editor: Community Socioeconomic Status is Associated with Social Participation Outcomes
Primary Investigator Dr. Jeffrey Schneider and Burn Injury Model System researchers published an article titled: “Community Socioeconomic Status is Associated with Social Participation Outcomes” in the Journal of Burn Care & Research. This letter to the editor examines the important role neighborhood socioeconomic factors play in long-term burn outcomes.
READ MORE
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Two Decades of the VR-12
There has been an increasing emphasis on placing patients at the center of clinical care and research and, in particular, assessing outcomes and experiences from the patient's perspective. One of the most widely used patient-reported outcome instruments is the Veterans RAND 12-item Health Survey (VR-12), developed in part by our own Dr. Lewis Kazis. This article reviews the VR-12 development and its applications over the last 2 decades, including research and potential uses in clinical care.
READ MORE
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New Studies from the Spaulding-Harvard TBI Model System | |
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Whose Outcome is it Anyway? A Person-Centered Approach to Conceptualizing Outcome After Severe TBI
In this study, we aim to identify and compare the notion of “acceptable” outcome after severe TBI from the perspectives of: 1) persons with TBI, 2) their caregivers, and 3) other groups. We will then develop a “Conversation Guidebook” that can be used by caregivers of persons with sTBI to help them prepare for discussions with healthcare providers about prognosis for recovery, goals of care, and desired outcomes.
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Engaging Caregivers in Outcome Assessment Across the Lifespan
In this study, we aim to develop and validate a shortened version of the “Post-Acute Survey on Severe Disability after TBI (PASSD-TBI),” a caregiver interview that our team previously developed. PASSD-TBI short forms will do three things: 1) provide new knowledge about the long-term phase of recovery from severe TBI, 2) improve understanding of factors that impact caregiver effectiveness, and 3) reduce the burden on caregivers when completing the PASSD-TBI Interview.
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These staff can be spotted around our clinics often, so if you see them around, please give them a warm welcome! | |
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Burn Injury Model System
Edward Santos and Kaitlyn Chacon recently joined our team as research coordinators. Edward is an aspiring clinician with a background in Neuroscience and French language. His interests include salsa and bachata dancing, learning new languages, and new foods! Kaitlyn is also an aspiring physician with a background in Biotechnology, Molecular Biology and the French language. She enjoys traveling, learning languages, fishing, and sewing.
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Spinal Cord Injury Model System
Sahnaz Pirooz and Matthew Klos are the newest members of our team. Sahnaz is involved in enrollment and Matthew is involved with follow-up data-collection for the SCI Model Systems Database Study. His interests include woodworking, photography, and art. Sahnaz enjoys cooking, hiking, film photography, and doing puzzles.
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Traumatic Brain Injury
Model System
Ally Sterling is the primary research coordinator for the Spaulding-Harvard Traumatic Brain Injury Model System study. She oversees study enrollment and study follow-ups with people in the study. Ally is particularly interested in medical ethics and medical decision-making and plans to attend medical school in the future. Outside of work, Ally enjoys taking ballet, modern, and tap dance classes and spending time with her nieces and nephew.
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Support National Burn Awareness Week!
Help us spread the word: National Burn Awareness Week is February 5th - 11th! This year's theme is focused on scald burns. Share your stories and include #NBAW on your social media posts.
READ MORE
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March is Brain Injury Awareness Month!
Each year the Brain Injury Association of America (BIAA) leads the nation in observing Brain Injury Awareness Month. There are many ways you can help raise awareness and share the message of Brain Injury Awareness Month.
READ MORE
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Model Systems Knowledge Translation Center
The Model Systems Knowledge Translation Center (MSKTC) is recruiting individuals, family members, and researchers or clinicians to become an MSKTC ambassador. The MSKTC Ambassador Program connects people who are passionate about improving the lives of people living with SCI, TBI, and burn injuries. Ambassadors take part in research activities, help create and test MSKTC resources, and share them with those who will benefit from them most.
BECOME AN AMBASSADOR:
BURN | TBI | SCI
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Including People with Disabilities in the Scientific Workforce
A new report from the NIH outlines recommendations for how NIH might bolster its efforts to support the inclusion of people with disabilities in the scientific workforce.
Some of the recommendations included:
- Develop an internal, NIH-wide effort to identify and address any structural ableism that may exist and promote disability inclusion
- Review policy, culture, and structure to identify opportunities to promote disability inclusion in the NIH-funded research workforce
- Expand efforts to include disability communities and the perspectives of individuals with disabilities
- Conduct research on disability health and health care disparities and equity by formally designating people with disabilities as a health disparity population
- Ensure that disability inclusion and anti-ableism are core components of all NIH diversity, equity, inclusion, and accessibility (DEIA) efforts
READ THE FULL REPORT
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Building Provider Capacity for Women with Spinal Cord Injury
A new resource developed at Mass General Brigham; “Building Provider Capacity for Women with Spinal Cord Injury” focuses on general medical issues; health maintenance and well-being; pregnancy and parenting; and sexual and reproductive health. This course was developed using consumer input and utilizes an innovative adaptive learning platform that presents content customized to each learner depending on their baseline level of expertise.
Note: This is a free, self-paced course only available to employees of Mass General Brigham; offers up to 4.0 CME
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By Bonnielin Swenor, Lisa I. Iezzoni and Steven Barnett
A diverse and inclusive workforce benefits science and research. But unless it includes people living with a disability — the largest minority group in the U.S. and around the world — research will never be fully representative and science will not reach its full potential.
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By Penelope Green
Half a century ago, Marc Harrison built a prototype for a home that would accommodate people of all ages and abilities. Now his daughter has restored it.
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By Megan A. Morris
A Speech-Language Pathologist describes the end-of-life experiences of her uncle who lived with a developmental disability.
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