The NEC Society, in partnership with the Section of Pediatric Surgery at the University of Michigan, with support from PCORI and the NICHD, is proud to announce the NEC Symposium will open with a session that addresses disparities in the care of fragile infants. The session will be co-facilitated by Dr. Jochen Profit, a neonatologist at Stanford University and Chief Scientific Officer for the California Perinatal Quality Care Collaborative, as well as Dr. Krista Sigurdson, a medical sociologist at Stanford University. Lelis Vernon, a mother of twin boys who both survived NEC, will participate in the session and work hand-in-hand with Drs. Profit and Sigurdson to integrate the patient-family voice and perspective. Their session has been slotted to kick off the NEC Symposium to provide the meeting’s participants with a framework as they explore methods for improving outcomes and patient-family integrated care for medically fragile infants at risk of NEC.
Dr. Sigurdson explains, “There is evidence to suggest that the degree to which a family is included in being a partner in their baby’s care may depend on a variety of factors, including a family’s race or ethnicity, family structure, and socioeconomic status, as well as language, cultural, and systemic barriers that go unaddressed. This certainly clashes with how any family would expect care to be delivered in the NICU.” Dr. Profit urges, “The time for action on disparities in care delivery is now.”
Jennifer Canvasser, founder and director of the NEC Society, adds, “As a nonprofit organization that embraces and values diversity as well as the empowerment of traditionally marginalized groups, including minorities, the LGBT community, and people with disabilities, it is critical for us to address the unacceptable reality of some NICU families receiving substandard care because of socially constructed biases and judgments, even from well-intentioned providers.”
Clinicians, investigators, and patient-family advocates from around the world will participate in the NEC Symposium. The fundamental goal of the Symposium is to propel the understanding, prevention, and treatment of NEC in medically fragile infants through patient-centered research. The Ann Arbor meeting will build off of the foundation set by the groundbreaking 2017 NEC Symposium, which was held in partnership with the University of California at Davis, Division of Neonatology, and also received a PCORI Engagement Award.
The NEC Symposium will take place on the University of Michigan campus June 2 – 5, 2019. The theme of the 2019 conference is “Breaking down the barriers to NEC prevention and treatment.”
Dr. Samir Gadepalli, a University of Michigan pediatric surgeon and founding member of the NEC Society’s Scientific Advisory Council, will co-chair the NEC Symposium in Ann Arbor, along with the directors of the NEC Society, Jennifer Canvasser, MSW, and Erin Umberger, M.Arch. Dr. Gadepalli cared for Jennifer’s son Micah, who died from complications of NEC when he was 11 months old.