The NEC Symposium was an incredible success and everyone wants to know how we did it. Why and how was the NEC Symposium different from other medical conferences?
For starters, unlike other medical conferences, the NEC Symposium – like the NEC Society – is led by parents who lost their children to NEC. Jennifer Canvasser and Erin Umberger co-chaired the NEC Symposium in partnership with Samir Gadepalli, MD, MS, MBA, a pediatric surgeon at the University of Michigan. Jennifer and Erin organized the minute details of the Symposium, from drafting the agenda to awarding scholarships for students, residents, and fellows to attend the meeting. With support from the Society’s Scientific Advisory Council, Jennifer and Erin executed a scientifically robust, clinically relevant, patient-integrated Symposium.
Every participant at the Symposium is valued for the unique perspective and expertise s/he brings to the NEC community. As such, everyone is valued and recognized as fundamental to the NEC Society’s vision of a world without NEC. Patient-families are not simply included at the meeting, they are fully integrated and empowered to use their voice.
The academic, scientific, and clinical faculty and participants are expected to authentically engage with patient-families throughout the planning and implementation stages of the NEC Symposium. The faculty and participants from the scientific community universally express appreciation for this process, with many noting that no other scientific meeting has such a powerful impact. Nearly 70% of participants report planning to implement a new research project or different care practice as a result of their participation at the NEC Symposium. In this way, the NEC Symposium is remarkably different from any other medical conference, and the NEC Society’s success can be replicated!
Those who participated in the two NEC symposia recognize the value of scientific conferences that integrate the patient-family voice and other diverse stakeholders, therefore the NEC Society has formalized a framework for other societies to model the same approach to integrating patient-families and hosting an All-In Meeting.
NEC Society’s 10-steps to hosting an All-In Meeting:
- Break down the hierarchy. Ensure everyone is empowered to participate, listen, and be heard. It is helpful for All-In Meetings to engage their faculty and participants by first name.
- Integrate patient-families.
- Start from the beginning and maintain integration throughout the planning, implementation, evaluation, and dissemination stages.
- Dedicate each session to a patient or family impacted by the disease.
- 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. Support clinicians and researchers with tools and advice on how to integrate their patient-family representative.
- Give patient-families the opportunity to ask the first question during discussions and Q&A time.
- Design and feature patient-family posters to integrate among the academic posters.
- Visibly honor patient-families throughout the meeting by using photos, videos, and quotes.
- Empower patient-families with information, tools, and resources to build their skills and confidence. Host a pre-meeting webinar and take responsibility for ensuring your patient-families have the information and support they need to
- 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 the face- to-face All-In Meeting and suggest tools that will help them cultivate their relationships after the meeting, including social media platforms.
- Create opportunities for patient-families and researchers to collaborate on research projects.
- Be mindful of word choice and how language can be interpreted by patient- families.
- Prioritize funds to support patient-families. Select a core group of patient-families and fund their participation.
- Intentionally elevate the voices of women, people of color, and individuals with rare or unique experiences to share. They will bring critical insight to your All-In Meeting and exponentially advance your work.
- 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.
- Invest in building relationships. Take the time to establish
trust and rapport by hosting networking events. Promote diversification and continuity of research by attracting new talent to the field.
- Support and include nursing mothers. Encourage mothers to bring their babies to your All-In Meeting and emphasize they are welcome to nurse anywhere, anytime.
- Demonstrate the impact, progress, and opportunities. Use live polling tools to help participants understand the impact of their work.
- Capitalize on the expertise in the room. Facilitate dialogue away from the podium by providing multiple and varied opportunities for informal discussion at circular tables where everyone can participate.
- 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.
The NEC Symposium conducted an evaluation at the conclusion of the meeting and one anonymous piece of feedback helps to illuminate 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.”
All-In Meetings give us the rare opportunity to engage in face-to-face dialogue 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 hosting an All-In Meeting and give their participants a transformative experience that grounds and enlightens us, and reminds every person in the room of why we are here.
This work was made possible through an Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI). To learn more, please visit PCORI.org