Jill M. Wecht, EdD
Professor of Medicine and Rehabilitation Medicine, Icahn School of Medicine at Mount Sinai
One Center’s Road from Investigator-centric Academic Research toward Participant-oriented Rehabilitation Progress (with Noam Y. Harel, MD, PhD)
The APEX center (Augmenting rehabilitation strategies with Plasticity, Electricity, and eXercise) is based within a large Veterans Affairs medical center with strong preclinical, academic, and clinical resources, and an established history of groundbreaking research in SCI. Despite these advantages, our center remains focused on investigator-centric research rather than participant-oriented rehabilitation progress. Several common barriers have slowed our ability to translate
research into practice: dissociation between our research culture and the hospital’s clinical practice; lack of a cohesive database to systematically track our participants’ clinical, physiological, and psychosocial outcomes across studies; insufficient outreach to cultivate meaningful connections with community groups; not truly incorporating the priorities of people with lived SCI experience into our research; limitations in the sharing of individual-level data and
metadata – a popular concept that has not yet been put into practice effectively by most centers including ours; and a paucity of dedicated funding to pay for transportation and other costs associated with SCI; costs which do not fit neatly into project-specific grant budgets.
Critically, many individuals with SCI express frustration at a lack of opportunities to participate in priority-focused clinical research, while many SCI investigators express frustration at low trial recruitment rates. This ironic gap represents an untapped opportunity. We will present our center’s experience in attempting to shift our approach to advance patient-oriented research, develop stronger partnerships among researchers, clinicians, and lived-experience stakeholders, and better align our study goals with community priorities.
We will present progress in establishing subgroups of key stakeholders in the clinical, research, allied health, lived experience, and administrative realms to prioritize practical steps to address these challenges. Taking these steps, along with instituting a formal recruiting and mentoring pipeline, will result in a sustainable clinic-research-community partnership to maximize functional independence, community participation, and quality of life for people with SCI.
Dr. Wecht is a cardio-autonomic physiologist, a Professor in Rehabilitation and Human Performance at the Icahn School of Medicine at Mount Sinai, and an investigator at the Spinal Cord Injury Research Service at JJPVAMC. She is a world expert in identifying and combating the effects of SCI on cardiovascular autonomic dysfunction and the implications on cerebrovascular and cognitive function following SCI.