Hello Friends,

This is day 2 of the NEC Symposium. We are kicking things off today with a splendid conversation with Mark Del Monte, CEO of the American Academy of Pediatrics (AAP). We chat about advocacy, and how we can move the field forward.

Check out today's episodes for more content and make sure to check our YouTube channel

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Short Bio: Mark serves as the CEO/Executive Vice President of the American Academy of Pediatrics (AAP). In this capacity, Mark leads a strong chief executive team for the organization which serves 67,000 pediatrician, pediatric medical subspecialist, and pediatric surgical specialist members. Prior to this role, Mark served as the AAP’s Chief Deputy and Senior Vice President for Advocacy and External Affairs where he directed the organization’s communications, public relations and advocacy activities.

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More videos from Day 2 of the NEC Symposium:

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The transcript of Mark Del Monte's Interview can be found below 👇

Speaker 1:1:07

Hello everybody, welcome back to the incubator podcast. We are live at the Neck Symposium here in San Diego. We are joined today with Mark Del Monte. Mark serves as the CEO Executive Vice President of the American Academy of Pediatrics. Mark, thank you so much for being on the show with us today.

Speaker 2:1:24

Delighted to be invited. It's great to be here.

Speaker 1:1:27

Definitely How's it going.

Speaker 3:1:28

I'm doing well. We've had a busy morning so far, but we love having people in the booth, so to speak.

Speaker 1:1:34

I'm going to let you ask the first question, Deffo.

Speaker 3:1:36

Well, what I have been intrigued we've been talking about this morning is the three different tracks, and certainly one of the major tracks is the advocacy and improvement track. So tell us about the major milestones and kind of neck advocacy and why should advocacy be a part of everybody's battle again?

Speaker 2:2:05

Oh, I think that's a great question. You know it's inspiring to see the way that this conference is organized. I appreciate how you said that, because in order to deal with this incredibly serious condition it's going to take a lot of people working together in different ways. There's definitely the medical science of it and the research of it. We're going to have to figure that out and understand the complexities and the markers and all of the things that are going to be necessary in order to really do good research on the origin and the consequences of neck. We're going to have to take really good care of the kids and we're going to have to involve families in that, and so the clinical track is really important, just so you get to the care side. But the opening speaker today said advocacy can no longer be peripheral. I typed it into my phone. I was so excited to hear that as an opening comment. We cannot achieve everything that we want to in building a world without neck unless we can galvanize communities of people, policymakers, decision makers at all levels to understand that we have to have an all-in approach. We're going to have to link up arms, we're going to have to work together in ways that are new and that's advocacy 100%. The children's stories are very compelling and family stories are very compelling, but they're not compelling if no one hears them. And advocacy is an opportunity to create change, to create real moments where change can happen, and there's nothing more consequential, more impactful, more change-making than to hear the story of a family. This morning we heard Jennifer's story about Micah and who can not hear that story and be changed by it? And so advocacy is an opportunity to create those moments outside of this community, while we learn from each other, all about the research and medicine. But how do we bring that story out to policymakers and everyone else so that they can understand the challenges and they can do what they can do? Maybe that's money, maybe that's policy, maybe it's a hospital administrator. There's all kinds of people that we can think of that can help us in this, and to get them to our side is the simplest definition of advocacy.

Speaker 1:4:35

I think that's so interesting because for many advocacy means, oh, I've got to go to Washington. And I think we fail to realize that advocacy, opportunities for advocacy, are available in our own backyard in a variety of manners. And I'm just curious as to what do you feel the impact of these small steps can mean to the larger body of work? I feel like sometimes you say what am I going to do with my little hospital? But I think we fail to realize how much those little contributions do make a difference. Do you have any thoughts about that?

Speaker 2:5:13

Oh gosh, say that again. That's so good. That's the most important thing. If you start at third base, you know I have to go to Washington, I have to talk to a senator, I have to talk to the Secretary of Health and Human Services. You're overwhelmed and exhausted before you've even started anything. And I think my favorite definition I'm a lawyer, I was a lobbyist for a couple of decades Like I've been doing advocacy in Washington DC at the level that you're sort of talking about. But even after all of that, my favorite definition of advocacy is creating a moment in which change can occur. Creating a moment in which change can occur. And if you think about what those moments can be, that can be between a family and a clinician. It can be a clinician and their department chair, a clinician and a hospital administrator. It can be a family and a clinician and a researcher. Creating moments for change. I think building an advocacy agenda means starting at the very beginning. It is to create change in ways that you can and in moments that you have. And if you start all the way at Final Jeopardy or whatever that metaphor is, I think people get exhausted and overwhelmed and feeling like it's too much. I have too much, and so I have seen it over and over where those tiny wins, those change moments that happen. They stack on top of each other and they create a trajectory of real, meaningful and deep change. So when people are considering like I'm going to get an advocacy for necrotizing intercolitis, what does that mean? What was your experience? What could have been better, what should have changed, what could have been improved for you and your family and your child, begin at the beginning and ask yourselves those questions, and those are real advocacy moments.

Speaker 3:7:06

Well, I think, especially when we talk about nec and we just spoke with Aloka about breastfeeding medicine and the disparities in breastfeeding rates I think those advocacy pieces are going to be absolutely critical to solving the problem with nec. I guess my question to you is isn't that probably true for all of the diseases that we treat? How did we kind of separate the science and the medicine from the advocacy? When it seems like to really move the field forward, we have to put the two back together.

Speaker 2:7:41

Yeah, that's exactly right. Let's take it out of the medical context for a moment, just to sort of think about it. Imagine the group of mothers who had children who were killed by drunk drivers, and what could they have done about it? This is how it is. What are we going to do about it? And suddenly they have changed a total set of social norms. They are not okay. It is illegal in many places in all places, I guess. But there's also a social norm that's changed and so you can create that change even without federal legislation or kind of big bang changes like federal legislation. I think the breastfeeding example is a perfect example of the way that our culture is changing rapidly. It wasn't so long ago that if you wanted to pump, you had to go find a bathroom and make a way and try not to intrude on your work too much, because you could get in trouble for that, and so people started to say no, this is bad for children, this is bad for mothers. Whether or not the science was perfect, we've always said breast is best, and so if we can facilitate breastfeeding, the AAP is certainly in favor of that. But all the things that go around that are the most important. So understanding like, okay, the science is breastfeeding is very good, but what are the social norms around that? How do you enable that? How do you enable moms to be able to do that effectively? For moms who can't do that, how do you enable donor breast milk and all the things that go around that? And so there's a lot of hope in this. I think there's a lot of potential for massive and impactful change. That begins with those simple recognitions that we need to do this better. We need to think about this differently and one by one, piece by piece. I think there's a lot of opportunity here.

Speaker 1:9:30

What is your story about advocacy? I feel like there's many ways to approach a problem, advocacy being one avenue to tackle any issue. I want to believe that, in your role at the American Academy of Pediatrics, you probably have the opportunity to explore a multitude of avenues. The fact that you're choosing advocacy to me is exceptional. I am wondering how did that come about and what was the realization that this is what we have to pursue?

Speaker 2:10:01

Yeah, one of the things that I say about the American Academy of Pediatrics, which is 93 years old now, is that advocacy is baked into the DNA. It was actually an advocacy purpose. There's a lot of great stories about those early pediatricians. After the turn of the century you got really annoyed at the AMA and walked out and founded their own association to do something differently for children. But it's baked in to the care of children that, in addition to one at a time, excellent clinical care and patient care, much of what can improve the lives and well-being of children happens outside the exam room. You don't have to tell pediatricians about social drivers of health. People get that immediately. We're trying to convince the adults that that's important these days, but for pediatricians and children that's just obvious. Fast forward to all of that. You don't have wins in injury prevention, which is one of the hallmarks of AAP's work over the years, without changing laws, without creating social norms. You can try to tell one patient at a time, one family at a time, please put your child on a card seat, please put your child in a safety belt, or you can create social change so that that becomes the norm. So what we say at the Academy of Pediatrics is that our core competencies in the world are policy development. So how do we use the best science to create the best policy? What's the gold standard for children, whether it's medical care or injury prevention or anything else, or kids in the United States and around the world? So that's number one develop the right policy. Number two is educate everybody about it. So policy and education. And then the third core competency for AAP is advocacy. And because if you have the right policy and even if you do the right education, you can't create the change unless you're really advocating for it, and so that brings you in to that field, whatever that looks like. And so for us we have a big Washington office. I spent a long time there, but our chapters are working in every state capital, but also our members are working all over everywhere to create a changed environment for children. And one of the things that I get inspired about all the time is the residents, because they don't know this is hard, yet so often they just solve it. You give them $25 and a half an afternoon and suddenly the whole thing is fixed. And I'm thinking to myself I would try to do that. It would take six full-time staff and a million dollars, and so that enthusiasm for advocacy is just throughout the organization, and so the payoff is how much fun it is and to see real change happen.

Speaker 1:12:48

Yeah, is that the saying? We didn't know it was impossible, so we did it? Something like that? That's right. That's exactly right.

Speaker 3:12:54

Well, and I love what you were saying about. As pediatricians, advocacy is just something that we do and I recognize most of our listeners are neonatologists and somehow, while we have some stars in neonatology doing amazing advocacy work, we've kind of separated from the community a little bit, and so I think this focus on advocacy kind of is part of every single session. I think we'll really remind people of what we can do on a one-on-one basis. You're going to be a part of one of the focus groups Transletting Neck Bedside Issues into Policy Action, so tell us where we are in terms of policy action and moving the needle forward for Nick.

Speaker 2:13:48

Yeah, thank you. The advocacy track at this meeting is just great. So I'm honored to be a part of speaking at that, and I think there's a couple of different points of entry here into advocacy. One is sort of from the NICU outward and then from the kind of top down so what do we need out of NIH? You know, really, way out there in this sort of massive engine of biomedical research in the world, how do we get there? So that's sort of tomorrow's talk. How do we get them to focus better? But to get there you have to decide what you want them to do. We have to have some questions that we want the NIH to answer. We have some ideas that we think Congress should fund, or, you know, the beginning of it is forming that policy agenda, and so I think the AAP section on neonatal and perinatal medicine is I'm not sure I agree with your characterization of them outside of advocacy. They have a great advocacy committee and they're working really hard, but I could see the point where the NICU is kind of a separate space in the hospital, you know. And so to think about, how do we think about that integrated into the hospital setting, integrated in the community, integrated in the patient experience and advocating about that. I think you're quite right. It can be very focused to look right at the baby and not beyond. So all of the things that in the incredible array of complicated medical intervention that happens in the neonatal ICU. We need so much more and I spend a lot of time with neonatologists. That's a really fun part of my job. But what I hear from them and I get to hear science talks all the time and that the field is surging forward as fast as it can. The learning curve is enormous. The development of science is so exciting. What accelerants do we need for that? What do we need to do to make that even go faster, bigger, wider, so that the whole field can be even more impactful in the care of these neonates? I think that is where you start to ask yourself the right questions about what your policy agenda should be.

Speaker 1:16:13

On that note. What do you think, then, about reminding people that it's okay to fail? Because I think that we want to be successful, we have an incentive to be successful, and yet I think it's rapid cycling of, sometimes, failures that still let us know that this is not the path we should follow. A failure is not a failure. It's just saying this is not the path you should follow and it redirects our efforts. What is your philosophical perspective on the idea of failure in the context of advocacy and moving the field forward?

Speaker 2:16:49

Are we starting with the small questions and then getting harder as it goes? I see how I see how it works here. You know, one of the benefits of being the CEO of an organization that's 93 years old is that we have been here 93 years and we have every expectation that AP will be here 93 more, and so that long-term view really matters, that that the world moves really quick right now, and so your rapid cycle kind of metaphor is right. What we do in tomorrow, what are we doing today? How are we already late? Did we already fail? Is it over? Did we miss it? Is it gone, or you know? Or or should we be optimistic or pessimistic? Or how do we even think about forming? I Would encourage all of us and this is the way I think about it at AP and how we think we are at a really important moment here. Science is advancing around us so quickly. I'm in a number of meetings now that AI, which is incredibly exciting. People are equal measures terrified and thrilled about what this could be, depending on what the meeting is, but there is a clear arc of innovation there. This field moves forward and across all of pediatrics, not just Neonatology, and they it did not. It does not move forward without tremendous failures and I Think the history I'll just take it out of neonatology for a second, thinking about COVID-19 vaccines, for example, and all of the controversy about COVID vaccines I hope that's not too controversial for the podcast but and think about adverse events and tracking adverse events for COVID vaccines. If you look at the history of vaccine development, there was a whole lot more failure. I mean it was that we would not tolerate today what was very routine in the early days of vaccine a development, and so even what would be a failure today is so much better, so much safer, so much Less impactful than failures of yesterday that I think it can create a little opportunity for boldness. I love that we've learned to fail better, I guess. Yeah, with a narrower parameters.

Speaker 3:19:02

So, like you said, the section on neonatal perinatal medicine is working Around the clock, really, at setting the policy agendas. So can you tell us a little bit about what's. What are the things on the agenda? Especially, we've got a lot of trainees who listen, some early career neos who may be invested in joining the charge.

Speaker 2:19:25

Sure great One. You already mentioned, I think, access to donor breast milk has been a huge initiative and is quite important and we've seen some really impressive success, actually some state laws that are moving along. People are starting and growing awareness of this as an idea that is Taking hold and we could be approaching that critical mass. I think there's the policy agenda, as I would describe it. Kind of non-clinical terms are things that are sort of in the NICU and out of the NICU, so all of the things that are impactful on families, that Are impactful in the way that they're showing up, so how infants are arriving in the NICU and why, and so all of the agenda around making sure that we reduce premature deliveries, we reduce all the causes of Prematurity and keep babies out of the NICU, so that there's a lot of work around that, which is quite important and and is in some ways connected to all the rest of our work about poverty and Substance use and all of that and and so those are all linked and interconnected. And then thinking about an agenda around Wrapping arms around families who have child, children who have stays in the NICU. So what is a plan for safe care? What is a good discharge strategy. How do you we create social safety nets around Families who have children now perhaps with special health care needs, that will need all kinds of support and an appropriate handoff to primary care, pediatrics or subspecialty or or others, and so making sure that that you know we are help keeping children from ever being in the NICU and then for children who are in the NICU, that they have someplace safe and well cared for when they leave you alluded to the talk that you're gonna give tomorrow, also as part of the breakout group strategies to increase funding for NAC research, and I think that's such an important topic because I feel like lots of people say well, I have this great idea, this is what I think I can do, I think this will make an impact, but how the heck am I gonna pay for it?

Speaker 3:21:32

And so obviously, I think people are familiar with the struggles of funding research. Do you have any answers?

Speaker 2:21:40

No, I have some advice. I'm not sure if I have a lot of answers. First of all, I think for Clinician researchers, you have to do a really good research. You know that that the the grant writing process is. The basic core of that is that you put in your best ideas and that goes into the competition with all the other ideas, and the best ideas get funded, and I think, by and large, that process is sound. The peer review approach to NIH funding is is sound to people doing that. So do great research and have great ideas and put in great, great Applications. I think the structural challenge there is when there's not nearly enough money and so the pay lines are too high and so a lot of good ideas, great ideas, go unfunded, and so that's what we spend a lot of time thinking about is making sure that the bucket is big enough, that the funding is Is complete enough to be able to fund all of the big ideas and great ideas that that clinician researchers are having. So some of this is just about having enough, just making sure that Congress is giving NIH Enough money to do the work that they, that we think ought to happen. What we know is that Congress does not give the NIH enough money to do work for children, that if children are 25% of the population, you would think the 25% of NIH funding goes to pediatric research, and we know that that's not correct and maybe it's not exactly proportional, but we could all agree that there should be much more. So our advocacy agenda there is, in addition to specific diseases or conditions Like neck or like prematurity as a category, but also making sure that that that bucket that is focused on children and pediatric research issues is big enough to make room for all of the priorities that that we have Neck and everything else besides neck, and so I think that that's the key piece what is the scope of the national investment in biomedical research so that we can really accelerate change, and how do we make sure that decision makers at NIH are focused enough on children as a group of the population? What we know for sure is that the National Institute for Child Health and Human Development is not nearly enough, it is not big enough, it does not have enough of the money, and that much more child health research is funded throughout the other institutes and centers of the NIH, and so I think we also have to educate ourselves about not just focusing on NICHD.

Speaker 1:24:23

Yeah, on that point, I think it's very interesting for us to be here at the next symposium, because you often hear that NEC doesn't get too much attention because it's affecting preterm babies, which are about x percent of the newborns, and then of these, these are the number of babies that actually get NEC, and so when you go into the statistics, you can really, you can really discredit or devalue the impact of an illness and to me, being here at the next symposium, it's really refocusing and centralizing the discussion around individual stories. How do you think it? What is your thoughts on juggling these two approaches, both the statistics, which obviously funding sources look at closely, but also the stories, the families that are suffering from these, from this illness, and how all this can actually be tied together to push advocacy forward, both in with funding, research and other and other manners.

Speaker 2:25:26

Yeah, that's a great. That's a great question because it mixes sort of the scientific approach and the advocacy approach. You know, if we just got the smartest people around the table, we could divide up NIH resources in a very statistically appropriate way. Right, that's a scientific mind. I'm a lawyer, so I'm going to step right out of that and talk about people and how this process actually works. But I think you've also, in your question, put your finger on something that's quite important. What we also can't do is have resource allocation decisions made by the children of a famous person or a powerful person or someone who has the ability to galvanize political resources, right, so you would have a distortion in a different direction if that's the way you go. I think you know NEC is itself something that is worthy of a much more intensive focus as a part of all of the constellation of things that can happen for preterm babies and elsewhere. But imagine the scientific enterprise associated with what would be necessary to solve it. What else would be the collateral benefit of that research across all of for GI for, you know, for all of the aspects of conditions that happen in preterm, and so that has immeasurable benefit In addition to building a world without NEC, you could actually build all kinds of other things. You don't know where you're going to end up when you begin. So I think we have a very strong case to make. Neonatology is doing a great job, and babies who are born earlier and earlier are doing better and better, and so we all have a stake in that, and we all have a role to play in telling that story, so that everybody can take their baby home.

Speaker 3:27:27

I have kind of a related question. So I think a lot of people say, well, I have this research idea, how can I fit it into the funding that is available? And I wonder what our role is as clinicians or clinician scientists in saying, well, maybe we can impact what is being funded by opening those lines of communication with people who do the funding. So what about advocacy in that perspective, saying you know, this is something we need and this is why. How do we open up those channels?

Speaker 2:28:02

Yeah, great, the one of the things. That's just true of Congress. And when we teach about advocacy, we talk about storytelling because you know, members of Congress, they're mostly lawyers. There's not a lot of doctors in Congress, not a lot of scientists in Congress. There are two pediatricians, I'm happy to say so. We doubled up on our pediatricians at the last election, which, for anybody listening who was thinking about it, I'll send you my email address and we'll talk about it. We need a whole lot more people in Congress who understand child health. That's your point. It was amazing to sit with Congresswoman Shryer Dr Shryer, when she was elected of the first pediatrician in Congress ever a few years ago and we went into her office, the whole leadership of the American Academy of Pediatrics like went down to celebrate this. You know, one of ours made it in to Congress. It was very exciting, it was a joyful moment. But what I realized is that we don't have to explain anything to her. We don't have to explain anything to her. She just gets it from the very beginning. That's very different than talking to her congressperson neighbor across the hall who ran a car dealership before running for Congress from his or her neighborhood and where you have to begin there. So beginning at the beginning for someone like Congresswoman Shryer is really different. And so when you don't have that scientific background, when you don't have the advantage of that kind of expertise, you have to really begin at the beginning, and that's when the politics business is really about people and it really those stories are compelling. And so what could be more compelling than a family talking about the experience of their baby in the NICU and humanizing a kind of esoteric discussion of the appropriate levels of NIH funding, about whatever? To let me tell you about my child? And no one can not be changed by that. You can't, you can't, you'd have. Very few people can ignore the power of that. So advocacy is about sort of creating those moments, as I mentioned, but the storytelling is a key part of it For this community. That piece of it is very simple. These stories are overwhelmingly compelling and it makes you want to do something to prevent NIC. The hard part is to figure out, like here's my story. The hard part is the second part, which is here's what I need from you, and that is a process of discernment. You have to work on that. You have to craft that ask, you have to craft that message. You have to build that question, and so we've got the stories here. Now the question is what do we want, what do we need? And so we can come up with that, and that's going to take work and it's going to be how big ideas. So, congress is what we can talk about, but also I think we can't assume that decision makers at NIH know about it either. You know, you have a whole lot of people at NIH who are focused on adults and so issues around prematurity or things that go on in the NICU maybe they remember that from medical school or residency.

Speaker 1:31:20

It's like when we have a physician family in the unit, you assume they know everything because they're quote unquote physicians, but they're adult internists and they know a lot, but they don't know the reality of the NICU and so we should never make that mental leap.

Speaker 2:31:36

I think it's the opposite of the airplane story where when they say there's someone on the airplane, all the pediatricians like, oh, I hope someone else. I guess I haven't worked on an old person with chest pain in a long time, that's exactly right.

Speaker 1:31:50

That is so true. I wanted to work. We're coming to the end of this conversation and I think you brought up storytelling, and to me, there's another story that we're not yet addressing, which is that the AAP is doing so many great things and yet you are here at the next symposium. I think the story about what this tells us regarding what the AAP thinks and how they see this particular venue with its all-inclusive nature, is something that, to me, is full of hope and is very inspirational. Can you tell us a little bit why it is important for you, and for you as a person, but also as a representative of the AAP, to be here today with the rest of the attendees?

Speaker 2:32:35

Thank you, it's it's. The honor is mine. I am delighted to have been invited and and certainly would have come just to come, and I'm happy to also speak as well. I think this the history of successful child health advocacy always begins with the stories, whatever the topic almost almost any topic. If you think about the whole history of the Food, drug and Cosmetic Act, it was because there were children who were killed by these sort of corner concocted serums and potions and things, and so you know, sometimes it's necessary to to create awareness and to create a change by telling the stories of the suffering of children, and unfortunately I wish that. I wish there was a day when I could say that is not the case. But this community is telling a story that needs to be told and needs to be heard by many, many more people. This is a devastating neck, is a devastating condition in the NICU, but but the whole work of neonatology, I think is, is a part of this as well. I don't think anybody knows what the NICU is until they need it, and then it is an overwhelming stunning. Then you don't ever have to be convinced anymore about why it's very important. But if you've never had a child in the NICU, you've never known a child in the NICU, have never been on that floor of the hospital, then why would you prioritize this? And so I think there is a. There is a powerful moment here with a powerful story to tell that will have, hopefully, major impacts, to create the tagline a world without neck. But we have so much more to do in with premature infants generally, and so I think I'm happy to be here to represent the Academy Pediatrics. I'm happy to tell some tips and tricks that I have learned over the years about advocacy, but being a part of this movement is very important for AP and it's very exciting for me to be able to participate in it.

Speaker 3:34:47

Certainly we can really feel the impact of when the families tell their stories, both of babies who survived and certainly of babies who didn't. And we know that a lot of families who come into the NICU may not be ready to share their stories, may not be comfortable sharing their stories. They may be home with a medically complicated child so that they they just don't have the additional bandwidth to to do the advocacy themselves. And certainly, especially through the AAP, we know that physicians coming to talk about their work has moved the needle by going to talk to their legislators or their local officials. And so for the clinicians or the clinician scientists, you know what, what role do we have in the kind of storytelling to to do that on behalf of our patients?

Speaker 2:35:49

I think that's really powerful as a way to think about this. The medical expertise that pediatricians, neonatologists, pediatric medical subspecialists or pediatric surgeons that expertise matters, that training, experience and clinical expertise is really important to bring to the policymakers and that does work. There is a respected voice for the health of children. Pediatrics is. By every public opinion poll. People think that pediatricians are experts and giving objective medical advice. They don't always follow the advice, but they believe that it's coming from a good place and that there's some science behind it and so that expertise matters. That is really important and that's why at AAP, we spend a lot of time bringing pediatricians in front of policymakers at various levels, because you can't assume knowledge on the policymakers side and hearing and being able to ask an expert is powerful. I think that is similarly powerful when pediatricians are speaking for children. I think that speaking on behalf of their patients, that really matters and can move the needle. As you said, it's a different kind of thing when families are speaking about their children. It is not better or worse or otherwise, but it is a different kind of story. It's a different way of hearing the experience. So when you're thinking as a neonatologist about what's going on in the NICU you're thinking about all the medical and clinical and pieces of it. Parents can tell the story about what it's like to stand on the outside looking through the glass worrying about their child, and that's just a different layer of the story, a different aspect, a different facet of the story. That's very important. One is not more important than the other. But what can happen and I think the best example is when the clinicians and families partner and can have the opportunity to tell their story together, and that is really that's alchemy. That's really exciting. And it doesn't take 100%. I appreciate your point so much. Not every family who's gone through something, whatever it is, with their children need to become advocates about that, and not all families want to do that, and that's really okay. But for those families who want to do that and who are ready to tell that story and to create that change, I think that there's power in people coming together, linking up arms, forming a community. It reduces the sense of isolation, having to advocate by yourself, but it also deepens the agenda, it deepens the voice, and so it's really powerful. So I think win-win is when the two voices are coming together, but on both sides there's huge opportunities to make change.

Speaker 1:38:47

And we almost don't want to connect with the families at the level of their story in the ICU, because the emotional toll that this can take is really difficult when you're trying to apply decision-making strategies, and I think this is why a meeting like the one today really allows us to do this outside the confine of us being clinicians in the ICU and start thinking without the burden of a patient that's waiting for a decision on our end. So I think this is critical, critical.

Speaker 2:39:15

That's a great point. I think I would not advise anybody who is still actively going through trauma to try to be exploited in that way. We have to be very careful around people and what's happening for them, both on the clinician side, and that physician-patient relationship, family relationship, is a healing relationship on many levels not just the actual medicine that you're practicing right in the moment. So, yeah, I think that's a really good point. When a baby is in the NICU, it's not the time to think, hey, you want to sign this petition, you want to go to this meeting with me. I would advise against that for sure.

Speaker 1:39:56

Mark, this was a phenomenal conversation. We appreciate you taking the time to sit down with us today. I have one more question. I'm so sorry, because usually let me tell you something, mark we record these things virtually, and so I get a text from Daphne that tells me I have one more, I'm done, and now we're in person, and so I don't really get that, so I didn't get the cue. I'm so sorry, daphne, go ahead.

Speaker 3:40:17

We've kind of talked about the graded, stepwise way that people can become involved in advocacy. So what if people really want to jump in, they want to go and change policy, they want to go to Washington, as it were? How do they get involved?

Speaker 2:40:36

Great question. So if you are a member of the American Academy of Pediatrics, that's super easy. If you're a neonatologist, join the section on neonatal and perinatal medicine and they have a great advocacy committee that is active and robust and have a huge agenda and it's very fun to watch and fun to participate. So please be a part of that. Strengthen that with your experience and with your ideas and bring your advocacy issues to the table. That is an enriching experience on both sides when people participate together in advocacy. So for the clinicians, I would absolutely join, and if you're not a neonatologist, whatever your subspecialty is that brings you to this work join that section. All of the sections of AP are engaged in advocacy. We spend a lot of time and energy supporting that work because it's just incredibly important For families. I think something like the Nex Society is so crucial as a starting point. There's almost no one unless you were a lobbyist before you had a child who can just enter that at the varsity level. That's not a fair ask, and so if you are thinking about advocacy as a family member or a caregiver, I would definitely find others, find partners. The evidence is very clear that if you have a gym buddy, you go to the gym a whole lot more and so that's why I don't have a gym buddy. But I mean it's too personal, sorry, but I think getting a buddy around advocacy. As a family, what you get is a lot of advocacy support and you also get a lot of other support, which is really important. So we also at AP, for families who have stepped forward and want to do this kind of work on many topics, we have the Family Partnership Network so families can step forward and join each other and work on advocacy that we try to facilitate at AP. And my last thought would be remember where we began about this, that advocacy is a series of moments. Very few people get a law passed, very few people testify in front of Congress, and that's okay. But everybody can make change. Everybody can help make one incremental improvement that others can join and leverage and stack upon each other to build something that we can be really proud of and to build a future that we all want for children and for families.

Speaker 3:43:07

Okay, now we can let Mark go about his day.

Speaker 2:43:10

Mark, thank you very much for making the time my pleasure. Thank you for having me. Thank you.