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Noteworthy Professional News

Noteworthy Professional News

Canvasser, Jennifer MSW; Green, Linseigh BA; Rikli, Joan MBA, MSN, RN, CPNP, NE-BC

Editor(s): Eklund, Wakako Minamoto DNP, APRN, NNP-BC, Section Editor

Author Information
doi: 10.1097/ANC.0000000000000718
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NANN PARTNERS WITH PATIENT-LED ORGANIZATIONS TO ADVANCE CARE FOR VULNERABLE NEONATES

Jennifer Canvasser, MSW; Linseigh Green, BA; Joan Rikli, MBA, MSN, RN, CPNP, NE-BC

Nann closely partners with parent-led organizations such as the Necrotizing Enterocolitis (NEC) Society.1 The NEC Society is the world's leading NEC nonprofit organization that brings together diverse stakeholders with the mission to “build a world without necrotizing enterocolitis.” To learn about how and why the NEC Society was launched, please refer to the January 2019 NANN Noteworthy Professional News.2

In 2019, NANN became more deeply engaged with the NEC Society by supporting and participating in the NEC Symposium at the University of Michigan,3 which attracted a total of 220 (including nearly 50 neonatal nurses and 20 families affected by NEC) attendees from Japan, Brazil, Sweden, the United Kingdom, Kenya, Australia, China, Mexico, Canada, and 30 US states. The program offered highly scientific and educational sessions, as well as compelling workshops, which directly engaged the researchers, clinicians, industry partners, and patient-families. One such workshop was attended by several NANN members, physicians, and parents, as well as NEC survivors themselves to explore the challenges that NEC survivors face later in life, long after discharge from the neonatal intensive care unit (NICU). The workshop focused on identifying and prioritizing the actionable items that can be incorporated into future research projects. The participating NEC survivors' lived-experience offered valuable information to the attendees in a way that textbooks and scholarly articles have never offered.

Linseigh Green survived NEC as an infant, recently graduated from New York University, and is now in graduate school at the University of Cambridge in the United Kingdom. Linseigh reflects on her participation at the NEC Symposium by sharing the following:

“After discovering at the age of 16 that my years of health struggles were actually long-term complications of NEC, I struggled with access to proper care and credibility, which made me feel like a lost cause. The NEC Society has given me a platform to speak out and to demonstrate that surviving necrotizing enterocolitis does not end when an infant is discharged from the NICU. My family and I felt heard for the first time. I facilitated one of the workshops at the NEC Symposium on empowering patient-families. It was remarkable to see ‘both sides of the examination table’ collaborating on ways to address disparities in research, care, and social-emotional resources. Most of the clinicians who attended didn't know that survivors lived with long-term issues in the first place, revealing that long-term complications of NEC are poorly understood today. I am proud to work with the NEC Society to change this by helping to advance research. I met a team here who genuinely wants to help families like mine. The NEC Symposium taught us that some things cannot be learned in a research lab or training programs. One must engage with those who have been personally affected by the disease to understand us.”

In response to the overwhelming inquiries from global colleagues after the Symposium about how a patient-led initiative pulled off such an impactful conference, the NEC Society published a 10-step guide to hosting an All-In Meeting.4 The NEC Society defines All-In Meetings as transdisciplinary medically oriented conferences that aim to integrate and empower patient-families to contribute the expertise they gained from their lived experience. As an example, the NEC Symposium dedicated each session to a patient-family affected by NEC with a slide of the honoree and a statement, which powerfully reminded all of the stakeholders on the urgency of the work. Many of these families whose children were honored were actually participating in the Symposium alongside nurses, physicians, and scientists.

NANN and Michigan Chapter of NANN were both present as exhibitors. Joan Rikli, current president of NANN, attended the NEC Symposium and represented NANN. She found the meeting to be inspiring and informative, and it moved her to incorporate what she learned into action at NANN. Those who attended the recent NANN conference in Savannah, Georgia, may remember that NANN dedicated every session to infants who either survived their NICU hospitalization or passed away following their time in the NICU. NANN is working to implement more aspects of the NEC Society's All-In Meeting guide for the 36th Annual Conference in New Orleans, October 10 to 13, 2020.5 Joan Rikli shares:

“Not only was this meeting important from the standpoint of presenting the latest research and treatment protocols, it was also incredibly impactful to hear from parents, families and patients who have experienced this horrible disease. Their courageous openness and honesty regarding what we've done well and how we can do better sent a strong message. They embraced the mantra of ‘nothing about me without me’ and challenged us to include them in every aspect of care possible. I am confident that through the collaboration of researchers, scientists, clinicians, and families-patients, we will make significant inroads into understanding, treating and beating NEC.”

Furthermore, NANN members, including Dr Jenny Quinn,6 Dr Shelia Gephart, and Dr Wakako Eklund, are serving on the NEC Society's core leadership team to support the NEC Society to ensure the perspective and expertise of nurses are prioritized in the organization's research, projects, and events. For example, the NEC Society recently received a $250,000 Engagement Award from the Patient-Centered Outcomes Research Institute.7 NANN members along with other researchers, clinicians, and patient-families are helping to lead this project to strengthen the NEC Society's capacity to advance patient-centered NEC research.

Part of NANN's collaboration with the NEC Society brings more acute focus on this devastating disease in a way that generates action. By working together to raise awareness, we can demonstrate to stakeholders outside of the NICU why nurses detest NEC. NICU nurses know firsthand how quickly NEC progresses, too often claiming the lives of infants who had already overcome many of their earliest obstacles, blindsiding all who are involved. Therefore, NANN members will work with the NEC Society to highlight the World NEC Awareness Day on May 17, 2020.8 The NEC Society looks forward to working with NANN members for their first-ever NEC Advocacy Day in Washington, District of Columbia.8 Together, we will educate and inform Members of Congress about necrotizing enterocolitis and why increased support for the federal funding, specifically for the National Institute of Child Health and Human Development,9 is critical to advancing the research for our most vulnerable infants at risk of NEC. The 2020 NEC Advocacy Day8 will help to set the framework for the NEC Symposium 2021 at Cincinnati Children's Hospital Medical Center, April 13 to 16, 2021. The NEC Society's 2021 meeting is expected to draw even more, globally diverse participants. Please stay tuned for the exciting announcements coming later this year.

The NEC Society looks forward to continuing to strengthen the partnership with NANN in 2020 and beyond. Parents and nurses spend more time with NICU infants than anyone; therefore, nurses and parents are natural partners. By collaborating with patient-led organizations, NANN is epitomizing what it means to make a difference for neonatal nurses, patients, and families.

References

1. NEC Society home page. https://necsociety.org/. Accessed December 29, 2019.
2. Eklund W, Canvasser J, Rikli J, Gephart S. Engaging nurses in NEC Symposium 2019. Adv Neonatal Care. 2019;19:84–86.
3. NEC Society. NEC Symposium 2019. https://necsociety.org/2019/06/06/2019-nec-symposium/. Accessed December 29, 2019.
4. NEC Society. NEC Society's 10-step guide for an All-In Meeting. https://necsociety.org/2019/07/12/nec-societys-10-step-guide-for-an-all-in-meeting/. Published 2019. Accessed December 29, 2019.
5. National Association of Neonatal Nurses. NANN's Annual Conference: Your Yearly Gathering of NICU Nurses. http://nann.org/education/annual-meeting/annual-meeting. Published 2019. Accessed January 2, 2020.
6. NEC Society. NEC Society Welcomes Nurse Scientist to Board of Directors. https://necsociety.org/2019/10/15/nec-society-welcomes-nurse-scientist-to-board-of-directors/. Published 2019. Accessed December 29, 2019.
7. NEC Society. NEC Society Receives $250,000 Research Capacity Award. https://necsociety.org/2019/08/16/nec-society-receives-250000-research-capacity-award/. Published 2020. Accessed January 2, 2020.
8. NECSociety. NEC Awareness Day May 17. https://necsociety.org/2018/11/04/nec-awareness-day-what-you-can-do/. Published 2019. Accessed January 2, 2020.
9. Eunice Kennedy Shriver National Institute of Child Health and Human Development. NICHD Research Priorities. https://www.nichd.nih.gov/grants-contracts/research-areas/priorities. Published 2020. Accessed January 2, 2020.
© 2020 by the National Association of Neonatal Nurses.