strategic direction

New Center Provides Systems Training to Improve Disability and Chronic Condition Care

In collaboration with Boston Medical Center and eight other healthcare systems, Learning Health Systems Training to Improve Disability and Chronic Condition Care (LeaHD) will train and mentor research scientists to engage in embedded research focused on rehabilitation and long-term support services, with a goal to reduce health inequities and improve care among these populations.

Last fall, the National Institutes of Health designated people with disabilities as a population with health disparities, marking the urgent need for research and interventions to reduce the disproportionate health challenges and needs of this population.

A School of Public Health researcher is meeting this urgency with the launch of a new center that strives to improve models of care for people with disabilities and chronic conditions. Mary D. Slavin, research assistant professor of health law, policy & management, is a co-investigator with the Learning Health Systems Training to Improve Disability and Chronic Condition Care (LeaHD), a five-year initiative that SPH launched in January in collaboration with Brown University and the University of Pittsburgh, funded by a five-year $5 million grant by the Agency for Healthcare Research and Quality and the Patient-Centered Outcomes Research Institute.

Focusing on rehabilitation and long-term support services, LeaHD aims to reduce inequities in healthcare and health outcomes for people with disabilities and chronic conditions by providing advanced training and mentorship to researchers interested in health systems research. With this initiative, the LeaHD team hopes to strengthen healthcare delivery systems and improve the quality of care for this population. More than half of adults in the US are affected by at least one chronic condition, with 27 percent experiencing multiple chronic conditions. More than one in four American adults live with a disability.

“Understanding and addressing the health-related challenges that people with disabilities disproportionately face is critically important,” says Slavin, who is a physical therapist with more than 30 years of experience in the rehabilitation field. She has published extensive research on rehabilitation, disabilities, and chronic conditions, such as studies on ME/CFS in PloS One, and burn injuries in the Archives of Physical Medicine and Rehabilitation. “LeaHD will enhance efforts to meet the needs of persons living with disability, to improve their quality of life and address inequities they experience when trying to access care,” Slavin says. “LeaHD will embed scientists into health systems to study these issues and develop effective interventions to improve health outcomes and access to healthcare.”

The LeaHD builds upon previous research that Slavin has contributed as a co-investigator of the Learning Health Systems Rehabilitation Research Network (LeaRRn), an NIH-funded rehabilitation research center that has successfully promoted learning health systems (LHS) research for the last five years. LeaHD extends this work, partnering with nine health systems, including Boston Medical Center (BMC), to foster rehabilitation-related research focused on persons with disabilities and chronic conditions.

Learning health systems research engages researchers to focus on research questions that health systems identify as priorities. This approach integrates research and practice, using data that is gathered as part of clinical care. The end result can accelerate processes to implement changes in the health systems that ultimately lead to higher-quality and more efficient care. This approach removes the lag time that often exists between publishing health research and applying that knowledge into practice to inform better care. 

Each year, LeaHD’s LHS Lead Scientist Program will select a cohort of research scientists to embed in one of the nine participating health systems to conduct disability and chronic care research. In addition to BMC, participating health systems include Spaulding Rehabilitation Network, Johns Hopkins Medicine, and the Cleveland Clinic, among others. LeaHD health system partners offer a variety of research areas, including disability care coordination improvement; innovative care models for people with chronic disability; unmet needs after traumatic injury; improving mobility of patients in acute care settings; transitions of care across the continuum; reducing disability and poor clinical outcomes among elderly; and addressing social determinants of health within a PACE (Program on All-inclusive Care for the Elderly) population.

LeaHD provides academic and on-site mentorship, core training, and individualized training activities to scientists, who can be faculty members or postdoctoral fellows, or individuals in clinical or operational leadership roles. Applications for the 2024 Lead Scientist Program have closed for this year, but Slavin encourages the SPH community to consider applying for the 2025 cohort (later this year)—and in the meantime, reach out to her to learn more about and become involved with LeaHD. 

“This program is a wonderful opportunity for faculty and students at SPH to meld data and analytic skills with an interest in rehabilitation research and improving the quality of life among people with chronic disabilities,” Slavin says. 

Improving continuity of care and long-term support services for people with chronic disabilities is a particularly important research area of focus for the center due to a lack of data on this topic, as well as an overburdened US healthcare system that is not designed to manage the long-term needs of this population. The research that LeaHD scientists conduct will raise awareness about these needs, and help ensure that people with disabilities have the necessary resources and opportunities to thrive in their communities.