Necrotizing enterocolitis is a devastating intestinal disease, with high morbidity and mortality rates. While the social-emotional costs of NEC to families is immeasurable, the economic costs of NEC are estimated to be $3 billion per year in the United States. For decades, barriers to improved prevention and treatment options have thwarted meaningful breakthroughs in research and clinical practice.
The Necrotizing Enterocolitis (NEC) Society, a nonprofit organization led by two mothers who each lost a child to the disease, will partner with the University of Michigan Division of Pediatric Surgery to host the 2019 NEC Symposium on the University of Michigan’s main campus in Ann Arbor. The 2019 NEC Symposium will bring together diverse stakeholders, including patient families, neonatal nurses, nurse scientists, physicians, investigators, nonprofits, industry, and governmental agencies that are committed to reducing the risks of necrotizing enterocolitis for vulnerable infants.
Together, participants at the 2019 NEC Symposium will strive to achieve the following objectives:
- Integrate the patient-family voice throughout the planning, implementation, and dissemination of the 2019 symposium and resulting projects and materials, as a means of helping to standardize patient-family-centered care in all aspects of neonatal health care and spur patient-centered outcomes research.
- Engage investigators in exploring cutting-edge novel therapies for NEC prevention and improved outcomes, as well as patient-centered comparative clinical effectiveness research within the neonatal intensive care unit.
- Bring together diverse stakeholders to reveal the barriers that exist in achieving improved prevention and treatment methods, and then empower 2019 meeting participants to collaborate on solutions to break down the stated barriers.
The 2019 NEC Symposium will take place June 2-5, 2019 and will include:
- Plenary sessions from internationally acclaimed speakers
- Panel discussions with patient families
- “Crossfire” debates that explore hot topics within the neonatal NEC community
- Poster sessions from junior investigators
- Nonprofit exhibit hall dedicated to organizations advancing the needs of families in the NICU
- Workgroups that require active participation from attendees
- Full sessions to delve deeply into bedside patient-centered care, as well as basic science
Patient-family advocates will be integral to the planning, implementation, and evaluation of the 2019 NEC Symposium. Patient families will collaborate with clinicians and researchers throughout the project.
The 2019 NEC symposium will result in novel projects focused on NEC prevention and clinical effectiveness research. Patient-family-centered care will be a recurring theme in the effort to achieve the goal outlined in the meeting’s tagline, “Breaking Down the Barriers to NEC Prevention and Treatment.” Meeting attendees will be urged to implement presented patient-family-centered care objectives into their clinical practice, as well as participate in the symposium’s resulting research projects. Various publications, including an executive summary and a review in at least one scientific journal, will ensure the content of the 2019 meeting is widely disseminated and accessible to stakeholders.