NIH Designates People with Disabilities as a Population with Health Disparities | |
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Last month, the National Institute on Minority Health and Health Disparities (NIMHD) formally designated people with disabilities as a population experiencing health disparities, paving the way for improvements in research funding.
The NIMHD Director states, "People with disabilities often experience a wide and varying range of health conditions that lead to poorer health and shorter lifespan. In addition, discrimination, inequality, and exclusionary structural practices, programs, and policies create barriers to timely and comprehensive health care, which further results in poorer health outcomes. People with disabilities who also belong to one or more other populations with health disparities fare even worse.
NIMHD recognizes the importance and need for research to better understand the complexities leading to disparate health outcomes and multilevel interventions."
At the Model Systems and the Rehabilitation Outcomes Center at Spaulding, we have long worked to understand the longitudinal, multifaceted, and chronic nature of traumatic injuries, and are proud to have advocated for this positive move by the National Institutes of Health.
READ THE FULL REPORT
Source: National Institutes of Health
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ROCS-Sponsored Grand Rounds:
Lisa Iezzoni: A Discussion of Dignity of Risk
Catch a special PM&R Grand Rounds talk from Dr. Lisa Iezzoni on the Dignity of Risk, a core independent living principle.
For Americans with significant disability, decisions about where to live are common flashpoints for the dignity of risk principle. Typically, a health-care professional, like the person's primary care physician, argues that the person is unsafe living at home and therefore must enter a nursing home. However, most people-even with extensive activities of daily living support needs-want to remain home in their communities. The belief that nursing homes offer safer residential environments is unproven and highly suspect. Furthermore, removing people from their personal home comforts diminishes their quality of life. Nonetheless, despite the clear moral imperative of the dignity of risk principle, many factors in the United States impede people with significant disability from remaining at home. Ableist and stigmatized attitudes of physicians about quality of life among people with disability are potential contributors. Few people have adequate financial resources to afford the personal assistance services (PAS) they need for daily basic supports. Medicaid, the major public payor for PAS, is difficult to join, varies widely by state, and has long waiting lists for home and community-based services. These issues are explored using stories from the author's friend Michael.
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LOCATION
Virtual
DATE
October 20, 12PM
COST
Free
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National Concussion Awareness Day & Podcast
September 15th was National Concussion Awareness Day. Are you prepared to recognize the signs and symptoms of a concussion? Listen to the latest episode of the Finding Strength podcast with guests Dr. Daniel Daneshvar & Esther Lovett to learn about concussion education programs!
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The Power of Community Organizations Webinar Series
Spaulding recently completed a webinar series on the Power of Community Organizations, featuring presentations from national and local organizations that support persons with conditions addressed by Spaulding’s three Model System Programs. We hope that these webinars will increase awareness of the services and resources available through these organizations and help us realize the power of community!
Spinal Cord Injury
Burn Injury
Brain Injury
We also offered a webinar on Spaulding Adaptive Sports Centers! If you missed the live webinars, view the archived webinars here!
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MGB Disability Employee Resource Group
On October 3rd, MGB kicked off its newest employee resource group: the Disability Employee Inclusion Alliance. There was a live presentation outlining the mission, vision, and goals of the group over the next twelve months. The group is welcoming all MGB employees, with and without disabilities (allies).
- Go to https://massgeneral.affinities.io/
- Search for “Disability Employee Inclusion Alliance” and select the group.
- On the right-hand side of the page towards the top, click the "Join" button.
- A pop-up window will appear; select "Mass General Brigham" to join.
Alliance leadership includes:
- David Estrada, Co-chair, Spaulding
- Zary Amirhosseini, Co-chair, MGH
- Cheri Blauwet, MD, Executive Co-sponsor, Spaulding
- Lynne Brady Wagner, Executive Co-sponsor, Spaulding
- Laurie Gregorio, Community Chair, NWH
- Courtney Maa, Culture Chair, MGH
- Mindy Bartleson, Company Chair, MGB
- Anna Dukess, Career Chair, BWH
| | | Link only accessible to MGB employees, but the group hopes to build strong community ties! Reach out to destrada@mgb.org if you're interested in connecting. | |
What webinar topic interests YOU? Tell us below! | |
NASEM Workshop: Data Integration in Learning Health Care Systems for Traumatic Brain Injury
ROCS Co-Director Joseph T. Giacino, PhD, recently joined colleagues to present at a workshop hosted by the National Academies of Sciences, Engineering, and Medicine (NASEM.) Participants explored a vision for how data integration in learned health care systems (LHS) for TBI can accelerate research and patient care. Learning health care systems describe research-partnered care networks that analyze sources of patient data (e.g., electronic health records, medical billing) and use those insights to continuously improve their health services. These systems are important contributors to progress in TBI interventions, where much remains to be understood about which interventions are most effective, and for whom. Fragmented and siloed LHS data undercuts the system's ability to learn and improve. Workshop presentations and discussions:
- Explored the variables impacting how TBI patient data is collected, standardized, harmonized, accessed, and analyzed - and the implications for care and research in LHS'
- Discussed a vision for how enhanced TBI data integration in LHS' could improve care and advance clinical and epidemiological research
- Considered key questions and priority use cases that could be explored through integrated patient record databases and TBI registries, and
- Spotlighted ongoing efforts towards building integrated research platforms and datasets for TBI.
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Meet Our LeaRRn Scholars! | |
Alison Cogan, PhD, OTR/L
Dr. Alison Cogan is an Assistant Professor in the Chan Division of Occupational Science and Occupational Therapy at the University of Southern California. The overall goal of Dr. Cogan’s research is to improve functional outcomes and community participation for adults with brain injury and stroke by improving the quality of rehabilitation care. She has expertise in secondary data analysis, use of electronic health record data for research, and qualitative methods.
As a LeaRRn LHS Scholar, Dr. Cogan will partner with Dr. Joseph Giacino at Spaulding Rehabilitation, with mentorship from Drs. Mary Slavin and Lewis Kazis. Her project will focus on the creation of tools 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.
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Emily Evans, PT, PhD
Dr. Emily Evans is an Assistant Professor in the Department of Physical Therapy at the Boston University College of Health and Rehabilitation Sciences: Sargent College. Dr. Evans’s research focuses on informing and improving post-acute rehabilitative care for individuals with acquired neurologic diagnoses by learning from clinically collected data and implementing evidence-based care. She has experience using Trauma Registry and Medicare administrative data to examine post-acute care outcomes of older adults with TBI.
Dr. Evans will work with the inpatient rehabilitation department at Spaulding Rehabilitation Hospital under the mentorship of Dr. Mary Slavin and Dr. Lewis Kazis. The overall goal of the project is to collaborate with practicing clinicians to leverage data housed in the facility’s Electronic Health Record to learn from and inform current practice through data extraction, analysis, and data visualization. The project will focus on consistently collected functional outcome measures and a recently implemented high-intensity gait training program.
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The Learning Health Systems Rehabilitation Research Network (LeaRRn) is supported by the National Institutes of Health. Spaulding Rehabilitation is a LeaRRn Health System Partner. Learn more about LeaRRn. | |
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Celebrating 20 years at Spaulding!
ROCS Co-Director Jeffrey Schneider, MD, Medical Director of Burn and Trauma Rehabilitation Program and Associate Professor of Physical Medicine and Rehabilitation, celebrated his 20-year anniversary at Spaulding last month. Throwback photo to when his impactful journey started!
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We welcome Sarabjeet Singh, MBBS, MMST, MBA, as the new program manager of the Neurorehabilitation Lab at Spaulding! Sarab has a background in medicine & over 15 years of experience in clinical research. He has served as Assistant Professor of Radiology at Harvard Medical School & was awarded several industry- sponsored and foundation research grants, which led 8 funded clinical trials as Principal Investigator. He is passionate about clinical research and has published over 65 manuscripts, including original research articles, reviews, and book chapters. | |
SCIMS would like to welcome its newest member to the team, Kyle Myers! He has worked in behavioral health and customer service, which has provided him with the skill set to engage and build rapport with people. Kyle has a relative with a spinal cord injury and has a strong desire to advocate for persons with disabilities. Kyle enjoys digital art/graphic design, spending time with his family, and traveling. | |
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by Sarah Bannon et. al.
*Voted best paper of the year in Rehabilitation Psychology!
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by Huan Deng, Timothy Genovese, & Jeffrey C. Schneider
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Walk for Advocacy & Awareness
BURN SURVIVORS OF NEW ENGLAND (BSONE)
Thank you to all who supported BSONE’s Walk for Advocacy and Awareness! The day was filled with fun activities and connecting as a community. Even Sparky the Fire Dog made an appearance!
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World Burn Congress
PHOENIX SOCIETY FOR BURN SURVIVORS
Phoenix World Burn Congress (PWBC) took place in early October! PWBC began in 1985, developed by burn survivors, for burn survivors, to identify and understand the issues that impact the daily lives of those associated with burn trauma. The event is hosted by Phoenix Society for Burn Survivors, the leading national nonprofit supporting burn survivors. Phoenix WBC is the world's largest gathering of burn survivors, their families, burn care professionals, and the fire service industry.
READ MORE
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6th Annual Stepping Strong Trauma Research and Innovation Symposium
Gillian Reny Stepping Strong Center for Trauma Innovation
This year’s theme, Ten Years Later: Advancements in Trauma Care After the Boston Marathon Bombing, highlights healthcare innovations and changes in the field of trauma that resulted from the tragic events of April 15, 2013. The symposium will feature presentations from Stepping Strong-funded researchers, a panel of speakers who have seen the clinical impacts of the Boston Marathon bombing, a keynote presentation from emergency medicine and preparedness expert, Paul Biddinger, MD, and the announcement of the 2023 Breakthrough Award recipient.
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 and
60 Fenwood Road Boston, MA 02115
DATE
November 16th
3:00pm - 6:30pm
COST
Free
CME and CEU Credits available
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National Disability Employment Awareness Month (NDEAM)
Observed each October, National Disability Employment Awareness Month (NDEAM) celebrates the contributions of America’s workers with disabilities past and present and showcases supportive, inclusive employment policies and practices that benefit employers and employees. ODEP has chosen "Advancing Access and Equity" as the theme for NDEAM 2023.
READ MORE
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The Access Board has published new guidelines under the Americans with Disabilities Act (ADA) and the Architectural Barriers Act (ABA) that address access to sidewalks and streets, crosswalks, curb ramps, pedestrian signals, on-street parking, and other components of public right-of-way. These guidelines also review shared use paths, which are designed primarily for use by bicyclists and pedestrians for transportation and recreation purposes.
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A Mass General Brigham health equity leader has published a new article about the system’s United Against Racism initiative. Allison Bryant, MD, MPH, associate chief Health Equity officer for Mass General Brigham, and her co-authors describe an antiracism campaign organized into three pillars of focus: leadership/ employees/ culture, patient care equity and community health and policy advocacy.
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James Langevin
Why would we create a system that disincentivizes people from going to work or saving money? That’s a question many of us in the disability community are asking ourselves when it comes to certain requirements for the Medicaid program. Afterall, it is already challenging enough for people with disabilities to get a job or start a career.
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