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#NEC SYMPOSIUM - Wrap up with 🙋‍♀️ Jenn Canvasser & 👨‍💼 Jae Kim MD

That's a wrap for the 2023 edition of the NEC Symposium. We are so thankful to the team for having us there and we hope that you all enjoyed our coverage of the event.



The transcript of Jenn and Jae's Interview can be found below:

Speaker 1:1:07

Hello everybody, welcome back to the podcast. We are wrapping up our coverage of the neck symposium and we are joined by Jen Ken Rasser and J Kim Jen J. How does it feel right now? Come close to the mic, yeah.

Speaker 2:1:23

I'm feeling really good. Yeah, yeah, and you know I was reflecting. I remember after our 2019 meeting, after the last in person meeting, I remember just feeling like a little more, a lot more actually stressed out than I.

Speaker 3:1:34

But, now.

Speaker 2:1:35

I only feel good.

Speaker 1:1:36

You feel good I feel great actually.

Speaker 2:1:39

I was expecting the word exhaustion, but you know I've been awake since 430 and I was out till midnight and I'm not.

Speaker 3:1:46

I feel like, I feel great.

Speaker 2:1:49


Speaker 4:1:50

I'm the same. You know, the 2019 conference was the last in person. We did a virtual 2021, but it was very attenuated and it was, you know, afternoons, afternoons, type of thing. There was none of this connection like. The biggest word in the word cloud at the end was connections, and what we hear in terms of the feedback from people and what we feel is that there's a big jump from what 2017 felt like, what 2017 was like chaos, because it was the first time doing it. 2019 was when we thought we introduced, but it was also exhausting and complicated and we didn't have a lot of actionables. We had, maybe, the research priorities that we said. That's what we'll try to focus on a few things. This one was felt like a leap, but a leap in the energy of, like, the number of people who have said it was a unique, one of the best experiences we've had in a long time Experiences we've had in a conference that were at the platform the way it's being, they feel how everyone is approachable. It's completely different, and so I think that's what I'm reacting to. It's like I don't I mean we planned this, but it's quite exciting to see the energy.

Speaker 3:3:10

I think you called it magic.

Speaker 4:3:12


Speaker 3:3:12

It is and it's energizing yeah.

Speaker 2:3:15

Instead of depleting. I think a lot of us. We find it energizing and what I think part of that magic is seeing people come together for the first time that have never met in real life. They only know each other based on the names, on the publications, and they're having the chance to not only meet here at the next society, but to actually get to know each other and to develop those relationships and the connections so that they can collaborate and come out of their silos.

Speaker 1:3:38

There's something very transactional about being on Zoom. You're getting on to really transact about like something you have to do, something you have to discuss, but the ability to just be around other human beings and just let things flow and just some things. You jump from one topic to the next. There's not like a timer and so on, that's right. It's dramatically different and so I'm not surprised that this is. The experience of being here in person is so much more important.

Speaker 2:4:07

I was just going to build off that and say thank you for helping to disseminate the content with your podcast, because we did get asked to record and to make it virtual and we intentionally kept it to in person because we think the magic happens in person. Sure Zoom is a nice kind of backup when it's necessary, but there's really no substitute to being face to face with someone and to look in their eyes and to really have that like magical connection. So thank you.

Speaker 1:4:32

It reminds me of when my wife and I have to decide what to eat for dinner and like the Zoom, the Zoom option of a conference is like take out. It's like it's convenient but it's not. It's not good and you don't enjoy it. And when you're done you're like oh, I should have just made something at home.

Speaker 3:4:47

Yeah, I think nothing replaces the kind of in person networking, and we'll do what we can't to share the information.

Speaker 4:4:57

Could it be that because we were all cooped up with the pandemic? That we're desperate, desperate people were wanting some and because the human connection in the meeting at every point was very palpable. It wasn't like people would be like oh yeah, how are you doing? And have a conversation?

Speaker 1:5:14

People were inviting and open, and sharing and it felt great. I also think that, to your credit, one of the things that I noticed was the scale of the meeting. Right, I mean, when we go to meetings like PAS, it's very overwhelming and you sometimes find people in the crowd, but here I think, the scale in person of course in person.

Speaker 3:5:32

Yeah, but I think here it's in person, but it's Impersonal. Yeah, yeah, yeah.

Speaker 1:5:36

And I think here the scale was just right enough that it was not overwhelming and you felt like you saw everybody and you felt like there was enough time and opportunities to speak to all the people you wanted to speak. So I think that was that was very well designed as well.

Speaker 3:5:49

I think the other thing you guys have really intentionally done is kind of break down the hierarchies, and I think that comes from this all in meeting and it's something we've been waiting to really address while we're talking to you. So tell us more about an all in meeting and why should it be the model for medical conferences?

Speaker 2:6:09

So we developed the concept of an all in meeting after our 2019 conference at the University of Michigan and people are like wow, your, your conferences feel really different than anything we've ever been to. Like why and how? Like how are you doing this? I'm like, well, it's also because it's led by like, we're a patient led organization. It's a patient led meeting, but it's more than that, right. Like we are being very intentional about how we're planning the meeting, what's happening at the meeting, how people are addressing one another. So maybe you already spoken about this, but we only use first names at the next society.

Speaker 1:6:40

And this has been, this has been a problem. We struggled with it, we got it down. We got it down. You have a star studded lineup, and so some of these people sit down here and it's very uncomfortable for me to call them by their first name Because I'm like this is Dr Gail Bestner. And like I have to call her Gail, and so I've been doing my best to abide by the rules and go on a first name basis, but it's been difficult for me.

Speaker 2:7:01

Well, thank you for following our rules, but and it's because at the next society we're friends and colleagues in this work and we really are we see each other as equal collaborators and contributors to a world without neck.

Speaker 3:7:15

You're asking me to call Dr Misty. Good misty, yeah crazy.

Speaker 2:7:21

And it helps to recognize that my experience as a brief mom is just as valuable as Gail's experience as a pediatric surgeon?

Speaker 1:7:30

Absolutely, but it is. It is, like you said, being comfortable with discomfort. That was this for me.

Speaker 2:7:37

I know, tell me about it. We're constantly putting ourselves out there, yeah.

Speaker 4:7:40

I think it's also testament to the physicians that are in our group that allow those barriers to go away, and and and really they lean into being in conversation with families and they shed a tear. They, they are, you know. They make themselves vulnerable openly, in public, they're reacting to the stories, they're becoming human in front of everyone's eyes, and to me, that's not every physician maybe would feel that comfortable, so, but the group that has gravitated to being one, to being on the council and so forth, I think there's a unique team for sure, and I think the 100 percent J are the clinicians that we have on our scientific advisory council and our board of directors.

Speaker 2:8:28

We have clinicians on our board as well. They are clinicians that do not have egos that are here for the babies and the families, and they know that and we know that, and that's why they're here, and that's why they were invited to be on the council Right, and so it's.

Speaker 1:8:42

It's absolutely a testament to our team members that was really felt and and I think that a lot of the something that came up repeatedly during our conversations were the fact that it's a rare opportunity for clinicians to interact with families outside of the clinical context, where I am not interacting with you based on the fact that I'm the provider of your son or your daughter. It's actually a complete different type of engagement. That is also something that I found, that I found a real opportunity.

Speaker 3:9:11

So, yeah, we said that that the group that you have are really they're approachable, they they, you know are wanting to, to engage with others, and I think it's a reminder for us that that this is what we should really be doing in the NICU. Right, if we really care about family centered care, family integrated care and we say parents are equal members of the team or potentially more important members of the team, I mean, we really have to break down some of that hierarchy that I think still really persist in most units.

Speaker 1:9:45

What are you, what are your takeaways you did, you did address them, obviously in the in on the stage, but what are your some takeaways of this year's Symposium and what are the things that are getting getting you excited for next year?

Speaker 2:10:01

I first want to just acknowledge how many pivots we had to do to have. Yes, this conference and a lot, so we had to change venues at literally the last moment. We we switched venues, have you?

Speaker 1:10:13

I don't know if you've spoken about that already on the podcast, but we did to commend your, your Agility in in number one changing venue, but also, as we said, it never felt like this was not meant to be the venue here, so kudos to that.

Speaker 2:10:26

Yeah, and so there was just so many pivots that had to happen to Experience the conference that we all just had, and I think the lesson that I take away is just the that we need to be relentless and that when we see barriers that are getting in the way of our goals, that we navigate our way around it and we think outside the box and we think differently and we collaborate with others to Still make it happen, maybe not as originally planned, but perhaps in a different and maybe even better, more fun way.

Speaker 1:10:55

That's right. That's right, just making it work.

Speaker 4:10:58

There's also that the reaction to the crises that happened I think reflect the maturity of our organization and the people that work have been working together for many years. So that wasn't all panic. It was sort of like we can figure this out and everyone Pitched in and real kudos to our Cincinnati Children's CME team that just made the whole pivot easy. But I just feel like the Maturity of the team having been together it's like a family that Knows how everyone else is going to react and and just rolled with it.

Speaker 1:11:35


Speaker 4:11:35

I think that's what's really, really neat. The other thing that I think is this uh, that we were just before we came on with just this idea of the lego Bricks, that everyone is picking their one idea and at the end of the conference I felt, more than any of the other prior conferences, that there are actionables that feel very real. I mean, I just had lunch and there's a bunch of, uh, startup companies that having a conversation with and and the ideas that were coming off that table, thinking about how to, how to learn from them and what they can learn from Um Patient families and how do we engage more with that? What does that mean for lining up more therapies, more diagnostics? How do we get the patient family's voices to their table when they go to regulatory that sort of thing? I think that's. That's part of that magic, like this meeting created enough chemistry for some of these Conversations so that we can you tell us a little bit about?

Speaker 1:12:34

I think we did mention the lego pieces at some point, but I forget yeah and so can you tell us a little bit what uh, what is um, what's the lego pieces have to do with the next symposium this year?

Speaker 2:12:45

Totally so. Um, we identified 20 research priorities, and that was the whole theme of this meeting is transforming our research priorities into actionable, like projects and things that will actually move us towards a world without neck. And while we were trying to figure out how do we get our participants More familiar with the research priorities that we have, we were trying to think of creative and fun ways, and I was staring at lego's that are just scattered all over my house and I realized that there are more than 20 different lego colors. We only had 20 priorities, and so I thought well, if we could assign a different lego color to each of our priorities, we could have people build their own prioritized research agenda based on their priorities and the colors. And so that's what people did, is they kind of picked their top five research priorities from the list of 20 priorities that we have? They built their five stack of lego's, they got some cool sunglasses in exchange, and then we asked them to take you know the color that was on top for them the most important research priority back with them so that they could Advance that particular research priority in their unit and with their colleagues.

Speaker 1:13:55

That's so interesting. Do you know the story of the colors in lego? So the founder of Lego in Denmark was a big fan of Piet Mondrian the painter and so because of that he only had five colors like whatever colors were on the Mondrian painting the red, the black and so on and it's his kids who said, dad, you need more colors. And it's the push of his children that then led to have more than just a few colored Lego. So I think it's kind of interesting that the colors of the Legos were driven by the founder's children. And here we are talking about priorities and colors, and I think that's kind of poetic.

Speaker 2:14:31

It was also driven by Absolutely you know.

Speaker 4:14:35

The other symbolism is this idea that people are taking a bite size it's one step, it's one piece, and then everyone is building something together and so that whole thing builds and they're taking home some concrete in their hand that put it on their desk or whatever, and that becomes like oh yeah.

Speaker 1:14:55

It's a reminder.

Speaker 4:14:56

I made a commitment, or what am I supposed to do with that? So it was a brilliant idea to do this to make it concrete, yeah absolutely.

Speaker 3:15:06

We talk about that at every conference we go to, and this one again. So much passion and excitement. But you leave a conference, you're hyped up and then you get back to your day to day and whatever your clinical duties are, your home duties are, your research initiatives are, and you say you know I had made plans, I had talked to collaborators and now I'm back just doing my same old thing. So I think this really helped people delineate something specific that they could do with this new excitement.

Speaker 2:15:39

And I think the one thing that we have now that we didn't have before, for example, after the 2019 conference is our research incubator, which I know I love the name.

Speaker 3:15:47


Speaker 2:15:48

We got one here. I dig it. So our research incubator is a closed space for neck researchers and clinicians to come together in a safe online environment to be able to collaborate, and so that's one way we're going to be able to keep these like Lego projects and collaborations and relationships going when we are apart and keep that momentum and that energy up so that they can continue to collaborate and connect even when we are not at the hard rock.

Speaker 1:16:12

Yeah, it's a tether almost to make sure that, yeah, it's great.

Speaker 3:16:16

And I think it's speaking of research. This was one of your major missions, obviously, and I think what you're doing is really disrupting kind of the academic model a little bit in where you're encouraging young people to collaborate with very senior people in a way that I think is not being done before, especially as we know our medical model is changing and people may end up at a location that doesn't have a neck researcher, and I think this is so innovative by linking people together so that location is not a barrier. Where do you see the future of the research incubator and the mentee program?

Speaker 4:17:02

I would say, the one thing that's really important, that we've been deliberate and intentional, is this idea of modeling, like having a different behavior where senior people, junior people, the way people interact, and taking down some barriers so you can collaborate instead of this is my data, that's your data. So it's trying to see what is the future research environment, look like, what would be an ideal state, and particularly because if we want to build a world without neck, we've got to get there fast, and it won't go fast if everyone is exclusive and protective of their own ideas. So it's being able to say in order to do that, we have to work together. And my reflection is that younger people are more receptive to the team concept, the team effort, than the older generation that was brought up on a very individualistic and protective kind of climate.

Speaker 3:18:01

Yeah, I'd say it felt that way even when we were fellows where it was competitive between groups. Right we were studying the same thing when it makes sense that we can move. If we're all working on the same thing, might we make less mistakes or not.

Speaker 4:18:15

Decide what part of the pie you want and move faster.

Speaker 3:18:19


Speaker 1:18:19

Very exciting. I'm going to give you the mic for our parting words and for concluding this whole event, so I'm going to leave it to you and you can share whatever you want to share.

Speaker 2:18:32

Thank you. I would say we started the meeting with our why. I shared Micah's story and we closed the meeting by sharing. We want our participants to go out in the world and to hold on to their why and keep their why front and centered in everything that they do, and to tell other people about their why, why they care about it and why other people should care too. Because that's how we make change in the world we change hearts before we can change minds and that's how we can then secure the resources we need to build a world without next. So my parting words would be to hold on to your why and to go out in the world and help us build a world without this devastating disease.

Speaker 1:19:11

Jen Jay. Thank you so much for dropping by. Congratulations again on a great conference.


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