The ROCS team has been inspired and guided by the Learning Health System model. The Agency for Healthcare Research and Quality (AHRQ) defines Learning Health Systems as “a health system in which internal data and experience are systematically integrated with external evidence, and that knowledge is put into practice. As a result, patients get higher quality, safer, more efficient care, and health care delivery organizations become better places to work.” ROCS and Spaulding Rehabilitation are on a journey to employ routinely collected care data to improve clinical outcomes. This will be accomplished through systematic documentation, data extraction, and visualization dashboards, and by empowering multi-stakeholder learning communities to steer data utilization and apply insights directly into practice. By developing the infrastructure to routinely collect, analyze, review, and learn from health systems data, we can determine the most effective treatments, promote adherence to practice guidelines, better understand health inequities, and improve overall health outcomes.
Realizing the Learning Health System model will require increasing collaboration across different groups of invested persons. We must build bridges amongst our researchers, clinicians, hospital administrators, and people lived rehabilitation experiences. To help us achieve this goal, Spaulding Rehabilitation is a Health System Partner in the Learning Health Systems Rehabilitation Research Network (LeaRRn). LeaRRn’s overarching objective is to establish a national resource network to advance stakeholder-partnered, rehabilitation LHS research to improve quality of care, demonstrate value, and enhance patient and system outcomes. ROCS faculty Dr. Mary Slavin is the Director of LeaRRn’s Dissemination Core, and the Co-Director of its Didactic Activities.
The LeaRRn center is funded by the National Institutes of Health under award number 1P2CHD101895-01 through the Eunice Kennedy Shriver National Institute of Child Health and Human Development and the National Institute of Nursing Research.
We are proud to be the only institution in the country to be home to all three Model System programs for persons with burn injury, spinal cord injury, and traumatic brain injury. By definition, a model systems program combines 3 basic elements: medical care, state-of-the-art research, and education and dissemination of model systems activities (both medical and research).
The research arms of these programs pool information with Model Systems programs across the country to conduct innovative and high-quality research intended to improve long term functional, vocational, cognitive, and quality-of-life outcomes. Each Model System location 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.
The Model System Programs are funded by the National Institute for Disability, Independent Living, and Rehabilitation Research (NIDILRR) under award numbers 90DPBU0008 (Boston-Harvard Burn Injury Model System), 90DPTB0027-01-01 (Spaulding-Harvard Traumatic Brain Injury Model System), and 90SIM0017-01-00 (Spaulding New England Spinal Cord Injury Center)
Our team is engaged on the TRACK-TBI study, with Dr. Joseph T. Giacino as Leader of the Outcomes Core.
Traumatic Brain Injury (TBI) is a condition, not a one-time event. Effective treatment of TBI represents a great unmet need in public health. In 2013, approximately 2.8 million TBI-related emergency department (ED) visits, hospitalizations, and deaths occurred in the United States. TBI is a contributing factor in a third of all injury-related US deaths. An estimated 3.2 to 5.3 million people live with the long-term physical, cognitive, and psychological health disabilities of TBI, with annual direct and indirect costs estimated at over $76 billion. Although we are gaining ground in our understanding of the pathophysiology of TBI, these advances have failed to translate into a single successful clinical trial or treatment.
The multicenter Transforming Research and Clinical Knowledge in Traumatic Brain Injury (TRACK-TBI) study aims to change this. In collaboration with expert public-private partners, TRACK-TBI has reached its enrollment goal of 3,000, having collected and analyzed detailed clinical data on subjects at 18 U.S. sites, across the injury spectrum, along with CT/MRI imaging, blood biospecimens, and detailed clinical outcomes. This rich and diverse precision medicine dataset will reside in a publicly accessible infrastructure of integrated databases, imaging repositories, and biosample repositories – a true TBI Information Commons. The high quality and fully integrated TBI-Common Data Element dataset will provide a global platform to connect TBI’s best scientists.
TRACK-TBI is funded by the National Institute of Neurological Disorders and Stroke (NINDS) under award number 1U01NS086090 through the U.S. Department of Defense - Medical Technology Enterprise Consortium.
Spaulding has built its Disorders of Consciousness (DoC) program under the guidance of ROCS Co-Director Dr. Joseph T. Giacino.
Dr. Giacino’s life work has been in understanding measures of change in a particularly vulnerable population: people with moderate to severe brain injury. His Neurorehabilitation Lab partnered with the clinical staff at Spaulding Rehabilitation Boston and Spaulding Hospital Cambridge to establish a systematic, evidence-based rehabilitation protocol. Goals are developed and revised based on the patient’s progress, which is measured using standardized assessment tools.
With three aims across clinical, research, and education domains, the DoC program has been a pioneering example of a Learning Health System approach. The Rehabilitation Outcomes Center at Spaulding is helping to bolster the DoC program by pursuing use of data analytics, data visualizations, and closed-loop communication through learning communities.
Innovative Treatments in Disorders of Consciousness (ITDC) Grant Program
The Rehabilitation Outcomes Center at Spaulding is helping to establish the Innovative Treatments in Disorders of Consciousness (ITDC) grant funding opportunity to generate and initiate disruptive ideas in the treatment of patients with disorders of consciousness and other “slow-to-recover” brain injuries.
Today’s technology presents us with an opportunity to analyze large data sets with thousands of data points. This type of research can help us map out expected recovery trajectories to predict healthcare outcomes based on individual characteristics or phenotypes. It can help us identify rehabilitation interventions that would most benefit subgroups of people.
One way of doing this is through digital phenotyping. Digital phenotyping is a process where data is analyzed from personal digital devices, such as smartphones and smartwatches, to study behavioral, social, and mobility patterns. ROCS faculty and affiliates are working hard on these kinds of discoveries.
With a health system that is constrained to a limited quantity of resources, it is critical that we identify the populations and individuals who are at highest risk for poorer outcomes. One way to operationalize these kinds of data insights are through risk calculators. Inspired by risk calculators developed from big data studies such as the Nurses’ Health Study and the Framingham Heart Study, ROCS team members under the leadership of ROCS Co-Director Dr. Jeffrey Schneider have begun to develop calculators relevant for the rehabilitation populations.
Faculty at the Rehabilitation Outcomes Center at Spaulding have a long history of developing outcome measures. Computer Adaptive Tests (CATs) are a form of testing that use a person’s responses to guide delivery of subsequent items. With advanced psychometrics such as Item Response Theory (IRT), we receive a standardized score in a shorter overall time.
TBI-SPIRIT is a 5-year study that aims to develop an efficient CAT assessment that can inform clinicians, family members, and researchers about challenges to community participation, monitor social participation recovery and assess their needs to connect individuals with TBI to needed resources in the community. The study will be conducted in several phases which include: (1) Interviews and Focus Groups: We will meet with individuals with TBI, their family members, and clinicians to identify important aspects of participation and develop questions for the assessment. (2) Testing and Refinement of the measure: We will administer a large number of items to approximately 500 individuals with TBI from across the country to evaluate and refine the questions on the assessment and calibrate the scoring using advanced measurement methods. We will then administer the refined measure to additional individuals with TBI to assess the reliability and validity of the measure.
The Life Impact Burn Recovery Evaluation (LIBRE) project is another assessment that offers a CAT form. Attempting to return to everyday life after a burn injury can be difficult, stressful, and emotionally challenging. While traditional rehabilitation strategies for burn survivors focus on physical recovery, the LIBRE focuses on the impact burn injuries have on peoples’ social life.
ROCS Faculty and partners developed the original LIBRE Profile for adults and are currently developing a computer-based questionnaire to assess the impact of burn injury on child health. These studies will evaluate different health outcomes related to children’s physical and social recovery after a burn injury.
TBI-SPIRIT is funded by the National Institute of Disability, Independent Living and Rehabilitation Research (NIDILRR) under award number HHS-2020-ACL-NIDILRR-DPCP-0382 through the Disability and Rehabilitation Research Projects (DRRP) Program.
ROCS faculty and partners aim to remodel our approach to care for survivors of traumatic injury, as explained in a perspective piece in the New England Journal of Medicine, From Survival to Survivorship – Framing Traumatic Injury as a Chronic Condition.
People who experience traumatic injuries often face complex, interconnected, and permanent disability. 3.5 million hospital admissions each year are due to traumatic injuries such as falls, motor vehicle crashes, and firearms. The current health system is structured to treat the acute and post-acute phases of these injuries and then return people to routine community care, which is inadequate for managing the ongoing complexities produced by these injuries. People who experience a wide variety of traumatic injuries often face common hurdles: chronic pain, mental illness, wounds and pressure injuries, DME maintenance, reliance on caregivers who need training, social needs such as transportation and housing, and barriers to getting specialty care due to referral requirements.
Healthcare systems must establish pathways to provide long-term supports for specialty rehabilitation needs. ROCS partners at the Stroke Wellness Institute have led the way with several programs that cater to stroke survivors in the community.