The Necrotizing Enterocolitis (NEC) Society presented the NEC Symposium in Ann Arbor, Michigan, June 2–5, 2019 with generous support from the Patient-Centered Outcomes Research Institute (PCORI), National Institute of Child and Human Development (NICHD), and Section of Pediatric Surgery at the University of Michigan. This was the second internationally attended conference hosted by the NEC Society. The 2019 NEC Symposium built off of North America’s first NEC Society meeting held in partnership with Mark Underwood, M.D., at the University of California, Davis (Fig. 1).
NEC Society logo.
The 2019 Symposium attracted 217 diverse participants from Japan, Brazil, Sweden, the United Kingdom, Kenya, Australia, China, Mexico, Canada, and 30 states from the USA. Participants included neonatologists, pediatric surgeons, pediatric cardiologists, nurses, dietitians, nonprofits, industry, lactation consultants, scientists, 20 patients impacted by NEC, as well as, representatives from PCORI, US Food and Drug Administration (FDA), NICHD, and Vermont Oxford Network.
Jennifer Canvasser, Founder and Director of the NEC Society, and Erin Umberger, Director of the NEC Society (Fig. 2), co-chaired the NEC Symposium in partnership with Samir Gadepalli, M.D., M.S., M.B.A., a pediatric surgeon at the University of Michigan. Jennifer and Erin each lost a child to NEC. Together, they organized the minute details of the NEC Symposium, from drafting the agenda to awarding attendance scholarships for students, residents, and fellows. With support from the NEC Society’s Scientific Advisory Council, the co-chairs executed a scientifically robust, clinically relevant, patient-integrated Symposium. Every participant at the NEC Symposium was valued for their unique perspective and expertise. As such, nurses, dietitians, lactation consultants, and other nonprofit organizations were valued at the NEC Symposium and recognized as fundamental to the NEC Society’s vision of a world without NEC. Patient-families were fully integrated and empowered to use their voice. The academic, scientific, and clinical faculty and participants were expected to authentically engage with the patient-families throughout the planning and implementation stages of the NEC Symposium. The faculty and participants from the scientific community universally expressed appreciation for this process, with many noting the meeting’s powerful, compelling impact.
Jennifer Canvasser and Erin Umberger.
In the NEC Symposium’s post-evaluation survey, 65% of participants reported planning to implement a new research project or different care practice as a result of the NEC Symposium. In this way, the NEC Symposium was remarkably different from any other medical conference, and the NEC Society’s success can be replicated!
Conclusion
The NEC Symposium conducted an evaluation at the conclusion of the meeting and one anonymous piece of feedback illuminates how an “All-In Meeting” can help to humanize medicine:
I may not remember all of the great science discussed at the meeting, but I will always remember ALL of the patient-family stories. And I will remember how the meeting made me feel and that will make me a better provider.
Those who participated in the two NEC symposia recognize the value of scientific conferences that include the patient-family voice and other diverse stakeholders; therefore, the NEC Society has formalized a framework (see Appendix) for other societies to model the same approach to integrating patient-families and hosting an “All-In Meeting.”
All-In Meetings give us the rare opportunity to engage in face-to-face dialog with diverse stakeholders and patient-families who share a deep and common vision. We can present the most innovative research and cutting-edge care techniques, while also feeling the real-life consequences of this disease as patient-families use their experience to advance the field. The NEC Society encourages other organizations to use the NEC Society’s 10-step guide to host an All-In Meeting and give their participants a transformative and enlightening experience.
Acknowledgements
The Necrotizing Enterocolitis (NEC) Society is a 501(c)(3) charity dedicated to building a world without NEC. The NEC Society brings together patient-families, clinicians, scientists, and other diverse stakeholders who are committed to driving research and improving outcomes for our most vulnerable infants. Publication of this article was sponsored by the NEC Society, Patient-Centered Outcomes Research Institute, and National Institutes of Health Eunice Kennedy Shriver National Institute of Child Health and Human Development.
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The NEC Society was founded in 2014 by Jennifer Canvasser, M.S.W., after her 11-month-old son died from complications of the disease. The Society is directed by Jennifer Canvasser and Erin Umberger, M.Arch (who lost her daughter to NEC), with close guidance from the Society’s Scientific Advisory Council and Board of Directors.
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Appendix. NEC Society’s 10-step guide to an “All-In Meeting”
Appendix. NEC Society’s 10-step guide to an “All-In Meeting”
The NEC Society encourages other organizations to use the NEC Society’s 10-step guide to host an “All-In Meeting” and give their participants a transformative and enlightening experience.
- 1.
Break down the hierarchy. Ensure everyone is empowered to contribute, listen, and be heard. It is helpful for organizers to engage their faculty and participants by first name.
- 2.
Integrate patient-families.
- a.
Start from the beginning and maintain integration throughout the planning, implementation, evaluation, and dissemination stages.
- b.
Dedicate each session to a patient or family impacted by the disease.
- c.
Pair each session with a patient-family representative. Empower that representative to contribute to the session, provide feedback on content, and/or speak from the podium. Encourage clinicians and researchers to collaborate with their session’s’ patient-family representative.
- d.
Give patient-families the opportunity to ask the first questions during discussions and Q&A time.
- e.
Design and feature patient-family posters to integrate among the academic posters.
- f.
Visibly honor patient-families throughout the meeting by using photos, videos, and quotes.
- g.
Empower patient-families with information, tools, and resources to build their skills and confidence. Host a pre-meeting webinar and take responsibility for ensuring patients and families have the information and support they need to contribute to an “All-In Meeting.”
- h.
Foster relationships between patient-families by helping them get to know each other and serve as resources to each other. Start this process well before an “All-In Meeting” and suggest tools that will build and maintain relationships after the meeting, including social media platforms.
- i.
Create opportunities for patient-families and researchers to collaborate on research projects.
- j.
Be mindful of word choice and how language can be interpreted by patient-families.
- a.
- 3.
Prioritize funds to support patient-families. Select a core group of patient-families and fund their participation.
- 4.
Intentionally elevate the voices of women, diverse groups, and individuals with rare or unique experiences. They will bring critical insight to an “All-In Meeting” and exponentially advance work in the field.
- 5.
Make it relevant and personal. Use real stories to draw in participants so they feel a sense of ownership and belonging. Break down technical, scientific presentations so that the meaning and implications can be understood by everyone in the room.
- 6.
Invest in building relationships. Take the time to establish trust and rapport by organizing networking events. Promote diversification and continuity of research by attracting new talent to the field.
- 7.
Support and include nursing mothers. Encourage mothers to bring their babies to an “All-In Meeting” and emphasize that mothers are welcome to nurse anywhere, anytime.
- 8.
Demonstrate the impact, progress, and opportunities. Use live polling tools, such as Mentimeter, to help participants understand the impact of their work.
- 9.
Capitalize on the expertise in the room. Facilitate dialog away from the podium by providing multiple and varied opportunities for informal discussion at circular tables where everyone can participate.
- 10.
Remain receptive and responsive to constructive criticism. Create a non-judgmental culture where honesty is valued. Feedback can be difficult, but the discomfort creates an impetus for improved care practices and research (Fig. 3).
Fig. 3 
All-In Meeting logo.
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Canvasser, J., Umberger, E. The Necrotizing Enterocolitis Society’s 10-step guide for integrating families and diverse stakeholders at medical meetings. Pediatr Res 88 (Suppl 1), 1–2 (2020). https://doi.org/10.1038/s41390-020-1098-9
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DOI: https://doi.org/10.1038/s41390-020-1098-9
