For the first time, the American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM) Annual Meeting plenary will include a speaker who is the winner of the Surinderjit Singh Young Lectureship Award. The inaugural winner, and newest speaker added to the 2020 AANEM Annual Meeting
plenary schedule, is Carolina Barnett-Tapia, MD. AANEM President Yuen So, MD, made the selection after reviewing an extremely talented pool of applicants.
“Dr. Barnett-Tapia brings a fresh perspective to our plenary speaker series, highlighting an important but often overlooked aspect of patient care,” said Dr. So. “Her work on patient-centered outcomes provides much needed context to our clinical decision-making, especially in regard to new therapies in neuromuscular disease.”
Dr. Barnett-Tapia is assistant professor, Institute Health Policy, Management and Evaluation at Dalla Lana School of Public Health, University of Ontario. She is also part of the medical advisory board for the Myasthenia Gravis Society of Canada, an active staff member of the University Health Network, and assistant professor of neurology and medicine at the University of Toronto. Dr. Barnett-Tapia’s plenary lecture at the 2020 AANEM Annual Meeting will discuss her work assessing new health technologies and treatments. The meeting will take place October 7-10 at JW Marriott Grande Lakes in Orlando, Florida.
Her research is focused on patient-centered outcomes for neuromuscular disorders, including understanding patients' preferences. By studying which outcomes are relevant for patients with neuromuscular disorders, these can be incorporated into clinical trials, clinical decision-making and policy decisions such as drug coverage in different healthcare systems.
“The landscape of rare neuromuscular disorders has dramatically changed due to the development of medications for otherwise untreatable diseases,”
Dr. Barnett-Tapia says. “These exciting discoveries come with a series of challenges. For example, some drugs have been approved through the accelerated program for orphan diseases, sometimes using surrogate, rather than patient-driven outcomes, to assess efficacy. Additionally, even when using functional or patient-reported outcomes, we have little data as to what constitutes a good outcome, considering the patients' experiences, views, and beliefs. Therefore, it is possible that some new drugs that are efficacious from a statistical point of view may have less benefit when looking at those outcomes that matter to patients.”
Dr. Barnett-Tapia earned her medical degree from Universidad Católica de Chile. She later earned her PhD in clinical epidemiology and health care research from the University of Toronto, and completed postdoctoral training as a clinical fellow with the school’s division of neurology and University Health Network. She completed her neurology residency in Chile.
This lecture honors the late, long-time AANEM member Surinderjit Singh, MD, MS. He was a member of AANEM from 1976 until the time of his death in 2018; most of his activity with the association was in the 1980s and 1990s. He served as an ABEM oral examiner and on several committees, including the Relative Value Scale Committee, Professional Standards (later Professional Practice), the Quality Assurance Committee, and the Education Committee.
This award was created after Dr. Singh’s wife, Jeena, chose to donate $50,000 to the American Neuromuscular Foundation in her husband’s honor, thus leaving a legacy of giving young physicians in his field an opportunity to shine.