Meet Becky Johnson Rescola of Improve Care Now

Remission rates don’t rise by accident—they rise when people, data, and purpose align. This week we were joined by our friend Becky Johnson Rescola, Executive Director and President of Improve Care Now (ICN), to unpack how a learning health network is transforming pediatric IBD care through shared data, quality improvement, and genuine partnership with families.

We trace ICN’s journey from ten centers in 2007 to a 100+ site network with a registry tracking over 33,000 active kids and young adults. Becky explains how consistent measurement and coaching improved remission rates, with growing emphasis on sustained and steroid‑free remission. You’ll hear a real-time example of change in motion: a shared decision-making tool piloted at eight centers to help families weigh adalimumab plus methotrexate, reflecting registry findings that combo therapy speeds remission with adalimumab but not infliximab. We also dig into how registry data supports off‑label insights, helps sponsors understand pediatric outcomes, and even flags potential trial participants through privacy‑preserving queries.

Beyond medications, we explore EMR integration with Epic to reduce data burden, targeted efforts to close gaps in race and ethnicity fields to spot disparities, and the network’s commitment to co‑producing resources with patients and parents. Becky brings the community to life through ICN’s conferences—scholarships, learning labs, and a welcoming vibe that empowers quieter voices to speak up and help set the agenda. From very early onset IBD and tailored transition to adult care, to smarter partnerships across GI and related conditions, the path forward is both practical and ambitious: make evidence usable, make participation easy, and make sure every child benefits whether or not they’re seen at an ICN center.

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Links

• Improve Care Now's website
• ICN- Tools and resources for patients and parents

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Transcript

Warm Welcome And Drinks Banter

SPEAKER_00 0:00

Hi, I'm Alicia. And I'm Robin, and you're listening to Bowel Moments, the podcast sharing real talk about the realities of IBD. Serve. This week we had the absolute joy of talking to our friend Becky Johnson Roscola. Becky is the recently appointed new Executive Director and President of Improved Care Now. Improved Care Now's purpose is to transform the health, care, and costs for all children and adolescents with IBD by building a sustainable collaborative chronic care network. They are enabling patients, families, clinicians, and researchers to work together in a learning healthcare system to accelerate innovation, discovery, and the application of new knowledge. We talked to her about the work of Improved Care Now. We talked to her about the clinicians and the systems that are part of Improved Care Now and how they all work together. We talked to her about clinical trials for children with inflammatory ball disease. And finally, we talked to her about her plans for the future of Improved Care Now. We know you're going to love this conversation just as much as we did. Cheers.

SPEAKER_03 0:57

Hi, everybody. Welcome to Bowel Moments. This is Robin.

SPEAKER_00 1:00

Hey everyone. This is Alicia. And we are beyond delighted to be joined by our friend and former colleague, Becky Johnson-Roscola. Becky, welcome to the show. Thank you so much. I'm thrilled to be here. We are thrilled to have you, and we have so many things to ask you. But our first very unprofessional question is what are you drinking?

SPEAKER_02 1:19

So tonight I poured myself a glass of Chardonnay. I had a holiday party earlier this week and it was left over.

SPEAKER_01 1:26

Not my typical choice, but the bottle is open. It needs to be consumed. So I'm taking one for the team. There you go.

SPEAKER_03 1:32

Yeah. Robin, what about you? I made fancy hot chocolate with some whipped cream in my cute little nutcrapper. Nutcrapper. Nutcracker coffee. I mean, nutcrapper is fitting. So you definitely have to leave that in, nutcrapper.

SPEAKER_00 1:51

Well, I am, as I was telling Becky before we hit record, I got real excited. And so I'm making it, I made myself a brown liquor drink. So I'm drinking, it's called a gold rush. And so it's bourbon, lemon, and it was supposed to be maple syrup, which was a different drink, but apparently we ran out of maple syrup and I didn't know that. So this is honey and syrup kind of stuff. Delicious. So yes. Yeah.

SPEAKER_02 2:09

Cheers.

Becky’s Path Into Pediatric IBD

SPEAKER_00 2:10

It's definitely a different ratio than the actual cocktail recipe because I'd already started to make the other one. So it's got a lot more bourbon and a lot more lemon than I think it's supposed to have. So very lemony. Cheers to a fun podcast, then. Yeah. That's right. By the end, I'll be yelling things like crapper. Okay. Becky, next question for you. What is your connection to the IBD community? What brings you into our world?

SPEAKER_01 2:35

Well, I currently serve as president and executive director of Improved Care Now, which is a learning health network using quality improvement methods to improve health outcomes for pediatric IBD patients. I've only been here since June. So this is a relatively new role for me. However, I've worked with Improved Care Now. We call it ICN. So I'll probably heretofore refer to it as ICN. I have worked in partnership with ICN for many years. And I was really excited for the opportunity to work with them much more closely as a part of their team. Prior to joining Improved Care Now, I worked at the Crohn's and Colitus Foundation for 15 years. So my journey with the IBD community really started back in 2010 when I began working with the foundation. Although one of my very best girlfriends, who I've known for 25 years, also has Crohn's disease. And I will be very transparent in saying that I never fully understood what that meant for her until I started working at the Crohn's and Clitus Foundation. I've been in public health most of my career, and it was a big leap for me to go from maternal and child health to a disease-specific organization. And I can tell you I've never looked back because this is such an incredible community. It is such a resilient group of individuals who are affected by this disease and are incredible warriors in their journey. And I hope to continue and end my career in working specifically with the IBD community.

How Improve Care Now Began

SPEAKER_00 4:10

Fantastic. That's a very nice synopsis of your entire career. That's impressive that you can do all of that in that amount of time because I know there's a lot in there as well. But I do want to spend a little time on Improved Care Now because we have had some doctors on that are part of the network and they've talked a little bit about their involvement. But I don't know that we spent a lot of time really talking about kind of like the history of Improved Care Now and really what they're trying to do and how they work with all these different doctors. So give us the big spiel on ICN.

SPEAKER_02 4:38

Sure.

Data, Remission Gains, And Network Growth

SPEAKER_01 4:38

So the network started around 2007, and it was a network of 10 institutions and IBD slash GI specialists at those 10 institutions who were concerned about consistency and quality of care for pediatric IBD patients. As you know, back then biologics were emerging for the pediatric space. They were virtually the only approved treatment options for pediatric IBD patients. And actually, we haven't gotten very far to this day with additional indicated options for that community. So they really wanted to understand what is happening with this population, what are the outcomes we're seeing, and what are the gaps in care, and discovered pretty quickly that they needed some sort of mechanism to measure that and some sort of intervention to improve the outcomes for those kids. So those 10 launched a data collection system and leverage quality improvement science to talk about ways that they could close the gap on some of that care. And to put it into perspective, when they first started collecting data, somewhere around 53 to 54% of those kids they discovered were in remission. If you look at our data today, we're at around 84% of kids in remission. So there's been significant improvements. Some of that is leveraging medication options, even those that are off-label. Some of that has been the quality improvement, a lot of it has been the quality improvement efforts to boost remission rates. And I also think some of it is simply having eyes on the problem and understanding and recognizing where the gaps exist and occur. So as the network continued to evolve, and it was founded by sort of the patriarchs, let's say, of the network are Dick Colletti and Peter Margolis. And they were really the drivers behind initiation of the network and these 10 IBD specialists who were part of it. Over the years, as the network evolved, they brought more institutions into the network. And as of today, we have about 102 centers. The number has been shifting a little bit because we've had one or two centers leave in the last few months and we've added several centers. So it's a little bit difficult to fully wrap our arms around, but I think we're at right around 102. Most of those centers are US-based. We do have a few international sites, and they continue to work toward ongoing improvement of remission as well as sustained remission is a very important measure for us. So kids who are in remission for a year or longer, and also steroid-free remission. So ensuring that these kids are getting into remission and staying in remission without the use of steroids. I could not tell you what our denominator was with those 10 sites, but I can tell you today we have 33,000 active kids in the registry. I should say active kids and young adults because some of these sites are continuing to see patients after they turn 18. In fact, that's about a third of our population are 18 and up, but they are still being seen as active patients at our pediatric centers. And we have data on over 70,000 kids cumulatively throughout the founding of the organization and the network. We partner really closely with the Anderson Center at Cincinnati Children's Medical Center. They are some of the leading experts in quality improvement science. So the team there has really helped us to accelerate the work that we're doing and ensure that we're giving quality coaching and a structure that really cultivates that spirit of improving and learning from that and continuing to test opportunities to improve the health outcomes in our kiddos.

SPEAKER_00 8:34

That's really remarkable. That's a lot of progress and not a long amount of time either. So that's really cool. I can understand why you wanted to get involved with this organization because it is making such an impact so quickly. Yes, we're still in our rebellious teenage years. Quality improvement research. Can we rewind that back a little bit and talk about like what encompasses quality improvement research? Like what's an example of a quality improvement research project?

Quality Improvement Vs Research

Example: Shared Decision Tool For Combo Therapy

SPEAKER_01 8:58

So I actually want to parse that out a little bit differently. There are really three primary aims of the network. The first is to leverage the registry and the data we are collecting there to identify gaps. So what gaps exist? For whom do those gaps exist? Because it helps us identify the problem so we know what we need to solve. The second aim is to leverage what I would call quality improvement science to test interventions to see if it improves the outcomes in the direction that we would like to see them go. And I will put a pin in that and can give you a very specific example of something that we're currently working on today. And then the third would be leveraging this data for research. So there is QI research, but I would say that largely we leverage this in two separate ways. And one is to utilize quality improvement science to improve outcomes. The research is more around taking this robust data set that we have available and understanding and better understanding what that means for the kids being served by the centers who are part of the network. As you can imagine, with a hundred centers, when you think about institutions that are serving the majority of pediatric IBD patients, they are part of the network with a few exceptions. But by and large, it's the institutions that you would expect to be part of something like this. And we have smaller sites, which is great. In fact, just today I spoke with someone from a community-based practice, and they are thinking about joining, which is very, very exciting because we really like engaging community-based practices. An example of leveraging, actually, this is a good example of combining both because it started with research. So I'm sure you know Mike Keppelman. I don't know if he's ever been a guest on your podcast. Mike does a lot of really incredible research and he had leveraged registry data to look at outcomes for kids as they were starting biologics, whether that was influximab or adolumimab. And what they found in their methodology, and the question they were really trying to answer, was whether or not combining those therapies with methotrexate, which Robin has mentioned already, would make a difference on how quickly that child went into remission. Interestingly, what they found is that it had a demonstrable effect when starting atolumab and no effect when starting in fliximab. So what we learned from that is that it's not necessary to consider combination therapy when you're starting in fliximab, but it could be very beneficial if a child is starting atalumimab. As you both know, that's a challenging decision to make, right? Because, first of all, who wants to add another oral treatment really to their medication and therapies? And also methotrexate can be scary. And it can be scary for any teenager because, as Robin already said, it can be impacted by alcohol consumption. And let's be realistic, teenagers might think about that from time to time. It can also be scary for young women who are sexually active because we know that it is contraindicated, or those who wish to become pregnant are pregnant. So it's not a simple decision, but what we are trying to do in response to that research is pilot a shared decision-making tool that will help practitioners talk with families so they can make an informed decision about whether or not choosing combination therapy with an adolum abstart makes sense for that patient. We are again just in the pilot phase. So we have eight centers that are working with us. They are going to test this intervention. They are going to give us feedback on what is working, what is not working, what is what are the hesitancies from the provider side and the hesitancies from the patient and caregiver side. And we will take all of that into consideration before we scale it across the network. It's also giving us an opportunity to test the shared decision-making model in general. And it's a reason to try that out. So that's pretty exciting. So that intervention is going to teach us a lot. And again, may help us move the needle somewhat on remission rates and accelerate getting into remission. And also it's going to teach us some things about methods that can be used in clinical practice. So that's an example of using QI science in the real world setting and then evaluating its impact on the data that we're collecting daily. Another really cool example, this is an unpublished paper. I think I'm allowed to speak about it. Maybe I won't go into specific detail, but we have conducted some large-scale research around a medication that is not currently approved for pediatric use to look at outcomes for those kids because we know we know things are being prescribed off-label all the time. And we are collecting data on the medications these kids are taking and how they are doing really, I should say beyond remission. We look at nutrition and growth and other outcomes. And the sponsor of that study hopes to leverage that data as an acceleration to get that medication approved for pediatric indication. So they can take this retrospective data that we have about how kids are doing on medications that they otherwise really themselves can't study without doing full-blown clinical trials. And it allows them to present really solid data about how kids are doing on those medications.

SPEAKER_03 14:36

I was actually thinking of that question as you started to transition into that topic because, like you said, and we've had a couple of pediatric GIs on here talk about why there aren't more medications for children because of the lack of clinical trials in that space. And are there any other ways besides the historical data that you've already been collecting that we could see to accelerate this? Or is this really, I mean, should we be looking at this for other medications that are being prescribed off label for pediatric patients?

SPEAKER_01 15:05

I think the answer is yes to both. And I'm I'm actually happy you asked that question, Robin. Another way that we partner with industry and with CROs working with industry is we can work with them to set up queries in our registry that allow us to establish a query that polls exclusion and inclusion criteria for a particular clinical trial. And it allows us to identify potentially eligible patients at some of our sites. All of the data that we look at from a network level is aggregate. We do not see protected health information. However, we do see their registry number, and every child is assigned a unique number in the registry. So we can go to that center and say, this child, this number showed up on the query. Can you do a little bit more research to see if this child is potentially eligible for the study? And then they already have the site, it already has an established relationship with the sponsor or the CRO. So they will then go to them and say, they usually give us feedback too, and we present that to the partner, but they also know that if it's a child who is potentially eligible, then they can direct them into the next step of potentially participating in the clinical trial. So that's been a really helpful tool. I think a lot of the companies that come to us are they they have challenging studies with very restrictive inclusion and exclusion criteria and they are struggling to find kids. And so likewise, many of the kids that we flag are still not eligible for the study, but it does provide them another pathway for identifying kids who who may be a good fit for their trial.

SPEAKER_03 16:48

That's great. And I just want to make sure that the families opt in to be a part of this for data collection and all of that. It's not like the hospitals or institutions or clinics are making that decision on their own.

Using Registry Data To Accelerate Approvals

SPEAKER_01 16:59

Correct. When they are, and all of this is very heavily regulated through IRB, uh, which is also through Cincinnati Children's or the individual institution. It can be either. And when they are brought into the registry, they provide consent at the time of registry entry. It's a great question though, Robin, because right now that initial consent as they are entered into the registry does not include the research component. That is a separate consent process. So from a pure research side, if somebody is looking at our data, about half our kids are consented for research. What we've found is that it's not that families aren't willing. Most families are. It's that there isn't time in the clinical visit, or there isn't the right person in that clinical visit to actually spend the time consenting the family for research. So that is a priority for us, and we're looking at a couple of different possibilities to help improve that percentage because the more kids consented for research, the more valuable that research is, and the more we can conclude from it.

SPEAKER_00 18:08

That's a really unique way of going about it. I think that's really cool because I I mean, I know in talking to our doctors, there's so much that's getting prescribed off label. It's more and more difficult, I would imagine, to get kids involved in clinical trials because they potentially have tried stuff already. And so, you know, I feel like there's some pros and cons to that, where it's like, well, good that kids are getting drugs off label, but also con is that means that maybe it's slowing the research down in order to get these things approved. So it's got to be kind of a quandary. Are we talking mainly about like treatments, like medications for inflammatory bowel disease, or are there other types of research or other types of quality improvement things that you're trying to do at ICN, like maybe diet-related things or quality of life-related things? Like, are there other things other than just medication that you're looking at?

Finding Trial-Eligible Kids Through Queries

SPEAKER_01 18:49

We do have a lot of variables that we collect. It's probably important to note that a lot of this data is collected through smart forms. And depending on the EMR electronic medical record that the institution is using, that defines how easily the data can electronically transfer or push into the registry. So about half of our data is electronically transferred. We'd love to get that up too. And about somewhere between 60 and 70% of our centers are using Epic. And, you know, that's something on the horizon. And Robin, I know we'll talk more about the future, but that's certainly something on the horizon is understanding how we can partner with an entity like Epic to ensure we're not being redundant and ensure that we are collecting this information in the most expeditious way because it does require time and effort in the clinical setting. So, medications, we collect lab results, we collect information on hospitalizations, we collect information on endoscopy, and we're working towards so uh we collect some data on uh depression screening. That is an evolving one. Another area. We're looking to add, and we are actively working with a committee to develop this is the intestinal ultrasound. So collecting data around that, we're also working to train more of our sites on leveraging intestinal ultrasound technology. We do collect information on growth, nutrition demographics, which is really important to us. In the last year or so, we really prioritize closing the gap on the data we are collecting around race and ethnicity because we didn't have completeness of that data and we've gotten those fields to under 10% of missing data. So we're very happy about that because that allows us to see where there are potential disparities and what we might need to do to address those. So there's a lot of data that's collected. You can actually go to our website and see the form that we use, and you can link show notes there and it gives you an entire overview of what is collected in that smart form.

SPEAKER_00 20:56

Very cool. I know a lot of what you do is working with centers and doctors and gastroenterologists, but there is also a component of having families involved as well and patients themselves. Can you talk a little bit about that? Like how do they get folded into figuring out the work of ICN?

Consent, IRBs, And Research Participation

SPEAKER_01 21:12

So I think patients and parents and caregivers have been part of this network's progress from the start. And there's a very firm commitment to ensuring that patients and parents are also centered in this work. We have a mantra of all teach, all learn. So when we come together, there isn't a lot of differentiation between who is attending as a physician versus a research coordinator versus an allied health professional versus a patient versus a parent, right? Everybody comes together in a community space that is, again, firmly committed to the idea that everybody has something to teach and everybody has something to learn in the community. There's a lot of emphasis on that lived experience. And so, therefore, patients are part of all of our committees that we operate. So even committees such as our research committee. I'm not sure if there's someone currently on the data operations committee. There might be, you know, we our clinical committee. So we have a variety of committees and they all have almost all have patient or parent representation. And we have a patient advisory council, our PAC, and our parent and family advisory council, which is known as our PFAC. So they are part of the culture and the fabric of this network, and they influence what data we collect, what interventions we consider their active co-developers in the work that we're doing. So I'm glad you asked that question, Alicia, because it's actually quite unique and much more integrated than any other model that I've seen as far as engaging and centering patients and parents in the process.

SPEAKER_03 22:52

Has it always been that way since the inception that patients and parents played such a big role? It has. It's been part of the culture from the start. Yes. You also alluded to what's on the horizon. So can you tell us more about what is on the horizon for ICN? Where do you see the work going?

Beyond Meds: EMR, Labs, Growth, Mental Health

Patients And Parents As Co‑Producers

SPEAKER_01 23:10

Yeah, there are a lot of things evolving. Again, one key one would be our data collection and how that is evolving through electronic medical records and the technology that's available. So that is a continual effort and partnership. We work with a vendor, it's called Hive. They are the developers and keepers of our registry. And so they also have their pulse on that and ensuring that if there are opportunities to learn from what is evolving in the EMR space, that we are doing that. But I do think in five to 10 years, it's going to need to look very, very different to ensure that we are most effectively and efficiently leveraging electronic data transfer and what is already being entered into the electronic medical record as standard of care. There is a lot of work going on with learning health networks in general. So when ICN started, it was one of the first. There are a lot of learning health networks out there for a variety of different specialty needs. There is a patient safety network that has been around a long time and has been highly successful. There's a group that's focused on liver. There's a group that's focused on quality improvement for perinatal outcomes, birth outcomes. There are probably at least a dozen, if not more, learning health networks, and more are evolving. More people are understanding that this is a very impactful way of influencing health outcomes. So there's probably opportunity to look more holistically at that. And instead of a hospital system being engaged in a network for IBD and a network for liver and a network for transplant and a network for patient safety, that is there an opportunity for all of that to coalesce? I think there is right potential for that. I also think our healthcare system is designed in a way that's probably not going to accommodate that sooner than later, just because things are very specialized and segmented in the care system as we have it today. But it's something we need to be thinking about and keep on the horizon. For me, what is important is that each of these centers pays an annual fee to be part of this network. Obviously, they get some great benefits. They have access to the registry, they have coaching, they have other support services that are available to them through the network. And I want to ensure that this organization is sustainable without them having to contribute anymore. Potentially there could come a day where there's less need or reliance on their individual financial contributions to the network. So bringing some sustainability that is beneficial to those centers is important, I think. I would also like to see a day, you know, our another one of our mantras is to share seamlessly and steal shamelessly. And so for me, it's important that we leverage what we know as a network and it benefits any child anywhere. So whether that child is being seen somewhere that is part of Improved Care Now's network, or they're being seen at a system outside of the network or at a local pediatrician's office, wherever they may be connecting to their care, there should be a benefit to them of what we have learned and what we know to be best practice in care of those kids. You know, we're learning all the time what is the best first step, what is, you know, based on the way a child presents, what is the best therapy to consider upfront? All of those things are things that we're learning throughout this journey, and those should be available to every child, regardless of whether or not they are fortunate enough to be seen at an ICN center. That's sort of lofty because how do you push that information out? How do you make that equitable when you have centers that are paying to be part of this? But I think it's authentically part of what this culture desires is to make sure that all kids have the best possible chance to thrive when they are diagnosed with inflammatory bowel disease.

SPEAKER_00 27:06

But I think there may be some inherent, for lack of a better word, marketing that comes with this. You know, like if the doctors that are part of your networks are going out and speaking at conferences and talking about the benefits that they've gotten, the things that they've changed, the improvements that they've made in their care because of being part of this network. Hopefully that makes a lot of people say, sit up and go, hey, actually, I think I want to be a part of that. You know, can I join? Or at least can I can I take this information and do something with it? So hopefully just the simple fact that it's it is making distinct progress and changing how kids are getting treated will hopefully sell it a little bit. But I know that that's hard because especially when you're talking about just a general practice GI, there's so many competing priorities as well. So it's hard.

What’s Next: EMR Integration And Sustainability

SPEAKER_01 27:47

Well, and to your point, Alicia, we may have to create some new pathways for them to be part of the network that don't look the same as if you're the Cleveland Clinic versus a small practice that sees a handful of patients each month. There, there just may need to be a different pathway for you to be part of the network. I do think another sort of short-term goal is to create more visibility for the network, not simply to help other pediatric providers know that we are there and that they could join or be part of it. I mean, that that is great too, but it's really more about creating visibility for the work that we are doing. There's a lot of opportunity for adult providers to know about this. There's a lot of opportunity for us to be doing more to connect what we know from these kids' experiences as pediatric patients into the adult journey with this disease. I think it's also compelling to think about, we talk a lot about transition of care. I don't think we have it quite right yet. And I don't know that we often have the conversation about the fact that caring for someone diagnosed as a kid is different for a variety of reasons, right? They they tend to have more severe disease. The escalation of treatment probably looks different in the pediatric space. You may have exhausted some of your best tools in your toolbox when they're still children. And that looks different for an adult practitioner to provide care for that IBD patient than it does for the patient who's diagnosed at 24 or 32 or 65. And I don't know that we've wrestled with that yet to say, is there a bridge we need to build here that is more customized for the pediatric diagnosed patient? Because their journey probably looks different. And so, sure, we can create ways to transition them effectively to adult care, but what that adult care system is designed to do may not be quite what it needs to be doing for a pediatric IBD patient who has graduated to adult care.

SPEAKER_03 29:52

It's interesting that you say that because I work in the arthritis space now. And a juvenile arthritis or a juvenile rheumatic diagnosis is a distinct thing. Even when you become adult, you still have juvenile idiopathic arthritis or juvenile whatever, because the disease more severe, presents differently, like all these kinds of different things that differentiate it. So, and parents ask us that all the time: like, will my kid always have juvenile arthritis or will it become, you know, rheumatoid arthritis? But no, it will always be juvenile idiopathic arthritis or juvenile lupus or juvenile dramatomysius, or you know, so there's so many correlations, but so many differences, like 180 degree, like just opposite ways that things are done. It has been a fascinating journey coming from living with IBD and being in the IBD space to going to rheumatic diagnosis in the arthritis space. I feel like there's a lot that can be learned from work that's being done in arthritis because it's been done for so much longer. Sure. I agree.

SPEAKER_01 30:52

That's a great call out, Robin.

SPEAKER_03 30:54

But I think that you are right. Like there needs to be a juvenile distinction for patients diagnosed as children.

unknown 31:00

Yeah.

SPEAKER_00 31:00

I'm also curious how like there's a lot more focus and conversation about very early onset VEO IBD. So those are really, really little kids. And so I'm curious, is there a whole separate conversation happening at ICN about those VEO kids and what to do about them? Because that's even further along. I mean, if you're diagnosed at like, you know, less than a year old and you have you're literally your entire lifetime basically with it.

Bridging Pediatric To Adult IBD Care

SPEAKER_01 31:24

That's a great point, Alicia. We have about, I think about 600 kids in our registry who are VEO. So that would be six and under or under age six at the time of diagnosis. We have a few parents, one in particular who comes to mind who's very passionate about this. So we're kind of working on a path to determine what more we could be doing to support those families. Because, in some ways, I feel like VEO is sort of where just pediatric IBD in general was 20 years ago, which is we don't know exactly what to do and sort of throwing mud at the wall to figure it out. And there are really a small number of IBD specialists who really understand how to manage disease. And not every family can get their child to see to see that particular clinician. So I don't know exactly what that looks like yet, but it is something that's on our radar. And I think it's something that's going to require partnership, which is something else we haven't really talked about yet. We have been connecting with the Carter family as a VEO IBD foundation. And they, you know, we've started talking with them about what work they are doing and what opportunities exist to partner. The Kron's and Colitis Foundation has done a lot of work in developing some resources that they now have available on their website for that VEO population. So that's another partnership opportunity. And we've been speaking to them about the unique opportunities for support groups for that specific population. The mom I mentioned, who is very engaged with us, she runs a localized support group through her hospital. And we've already initiated some conversation to talk about what could that look like in more of a virtual space or expanding that to more of a national approach so that we make it more readily available because certainly those 600 plus families are rather scattered across the country. So I think that's a really good example of an area where we have a lot of room to grow and do more to address the unique needs and really improve the outcomes for those kids and ensure that those families are plugged in to the support that they need. Because when you talk to those parents, that's the biggest thing you hear is that there's just not many people who understand it, know about it, and can step into support and really help them sort of wrap their arms around the situation and understand what resources and support might be out there to help them in that journey. I do think that continued work in partnering with other like organizations is an important goal for us as we move forward. Obviously, the Crohn's and Colitus Foundation is one of those. Our missions are aligned but unique. And I think there are lots of opportunities for us to create connections that will better serve both our communities, which overlap significantly. I mean, it's really the same community. We're working in closer partnership with entities like Saya, which I know you're familiar with, Tina and her organization, and other niche groups that are serving populations who don't necessarily always have as much of a focus on pediatrics because it is a smaller population, much smaller than the adult population. And so I think there's a win in both directions for us to be partnering because it raises awareness for both organizations. So a lot of work to be done there and very excited about what is next. And I think some of that ties back to creating more awareness again of the organization. So I had an opportunity when I first started in this role to consult with a dear friend who also is involved with a smaller nonprofit who had some experience with exhibiting, and she gave me some really great tips and strategies. And so we are actually going to test our first exhibit next week at an IBD conference and see what traction takes shape. And we are definitely doing more to be engaged and involved at conferences that have a GI or IBD focus so that we are connecting with clinicians, we are connecting with corporate partners to make sure that people know about the work we're doing.

Very Early Onset IBD: Needs And Partnerships

SPEAKER_00 35:34

Very smart. And like you said, there you're you're getting to the adult doctors as well, who potentially are then talking to families and or you know, some of their patients who may actually have children that then are affected. So I think that that makes a lot of sense in just getting people aware of the work. Just there, and I'm sure there are some potential crossover sort of things that are happening in the research space that might be adult things that are happening that you say, hey, well, this is actually something we could be looking at, or a quality improvement thing that I know we've done over here that could be something we shamelessly steal to the pediatric space. Plus, it's just kind of fun to see your old friends as well, right? It is. Okay. So in any time where there is a transition from one person who's been leading the organization for a long time to a new another person, sometimes that there can be bumps in the road and some differences in like the vision of where the organization should go, depending on who's kind of leading the leading it. How have you navigated the folks that may be skeptical of a new administration, so to speak, and may question a bit the direction you're wanting to take the organization in?

Raising Visibility And Cross‑Organization Collabs

SPEAKER_01 36:33

Yeah, I do want to point out one of the sort of uniquenesses of the network. I have to start with a little bit of history. So I mentioned that Dick Colletti was one of the initiators of the network and he was a clinician. And so he served as the both sort of both the clinical director and executive director of the organization until 2019. And at that point, he decided to retire. So in 2019, heading into 2020, which was certainly an uneventful time for everyone, they reorganized and decided that Peter Margolis would continue to serve as a scientific director. He was working for the Anderson Center that I mentioned earlier at the time, and that they would hire a clinical director who would be part-time, and they would hire an executive director that would be full-time. So 2020 is when my predecessor Kristen started. And I'm super grateful because she came from the Anderson Center. So her expertise was really more in the QI space. And she did some really excellent work to lay the infrastructure for a lot of things. She did the very challenging and difficult work of updating contracts with the centers and getting standard agreements with people, building the board, building other relationships. So, so it's been actually really wonderful to stand on the shoulders of that work that she has done and to come with a little bit of a different perspective, which is one that is solidly committed to the IBD community, which she certainly was solidly committed to them too. And she had experience with improved care now, but her focus was a little bit different. So I think that's been fairly well received because a lot of the people who are connected to and involved in improved care now are also involved with the Crohn's and Colitis Foundation. And I had an opportunity to work with them there. And so I would say that people have been very welcoming and very enthusiastic. And I think that that is actually reflective of the culture here, which is one that is very adaptable to change, very supportive in how it operates, and very welcoming to people. So I really haven't experienced that yet. It may come at some point. There are certainly a variety of opinions on the priorities of the network and where we should be headed. And I appreciate all of those. One of the things that I've been trying to do since I started is connect with different centers. There are a hundred, so it's a lot, but I do hope within the first maybe 18 months that I have an opportunity to talk with representatives from each one of those centers. And when I am traveling to places, whether that's for conferences or other events, I try to visit them in person, which has been really great. And they have been really grateful that I have made the effort to come and talk with them and hear from them. I'll also add that that is very unique in that we do have three directors with a scientific director, a clinical director, and I've known the clinical director my entire career in IVD. So he and I sort of had a really nice relationship from the start. And then you have the full-time executive director. So there's a lot of trust that's required in that situation. And building that trust so that both the clinical and scientific directors know that I will stay in my lane and I will engage them when things are outside of my scope of expertise. And then me doing the same for them. So we're we're learning that and building that trust with one another as we go.

SPEAKER_03 40:19

One thing we haven't talked about at all is the resources that ICN has created for patients and caregivers. And the conference, is it do you call it a conference that you have for families? So the research is wonderful. The findings are wonderful. All of the data, the extrapolation, all that's wonderful. But you actually have real-world resources for families that they can go to your website and download and be a part of the conference and really let their voice be heard in a meaningful way through your organization. Can we talk a little bit about that?

Leadership Transition And Culture Of Trust

Real‑World Resources And Community Conferences

SPEAKER_01 40:55

Sure. We do. We have a lot of resources on the website. I think over time the network has tried to ensure that it's filling gaps. And again, trying to be cautious that not to create redundancies if resources already exist through other organizations or other places. Again, what is very unique is all of those resources are co-produced, co-developed with practitioners and patients and families. And some of them are very driven and conceptualized by patients and families, which is really exciting. For example, I mean, our patient advisory council, our PAC, has created a lot of content over the years. In addition to having resources that are posted on the website, they run a social media page. They run a podcast, I believe. They do a lot of different things to make sure that they're creating connections to the patient community. The Parent and Family Advisory Committee just recently released a caregiver resource guide, which was a long time in the making. And it is a very extensive resource to help caregivers and families in this journey of managing a young person who is impacted by IBD. So I appreciate you calling that out, Robin, because there are a lot of things on our website that are beneficial beyond the network and to families that have a pediatric patient with IBD. So I appreciate you too asking about the conferences because there is a long history of the community coming together at conferences to share learnings, learn from one another, teach one another, and also learn from external resources that are available. Prior to the pandemic, we had spring and fall in-person conferences during the pandemic that had to shift. And coming out of the pandemic, they moved to a virtual conference in the spring and an in-person conference in the fall. The huge benefit to the virtual conference is it's obviously much lower cost for both the network and the participants, and it's much more accessible to everyone and especially to patients and families. So that's a really wonderful benefit. But as you both know, a virtual program is just not the same as being together in person. So we still come together in the fall. This past fall, our numbers have been pretty constant and strong throughout the years. This past fall, about 70% of our centers sent representatives. We had over 250 people there. Again, patients, parents, practitioners. We work very, very hard to ensure that patients and families have accessibility to scholarships so we can make it affordable for them to attend and not a burden. One of my other goals long-term, actually short-term and long-term, is to make the conference more affordable across the board because our centers do have to pay. It is a rather expensive conference. They do get CME for the practitioners, but it's compared to it's very different from your typical CME conference, and it is rather expensive. So it's an important goal of mine to get additional support so that we can lower the costs that we have to pass on to the healthcare professionals because we do, we do not make money on our in-person conferences. And what is so exciting is the way that community comes together. The energy, I just I really can't describe it. Our conferences start with an engagement fair, which is reception style, but we have tables. And in fact, I'll just put this out there that in 2026, we're going to have a price point for tables at the engagement fair for nonprofits would be a mere$250. Because I think it's important for people to see the network in action. And I think it's important for the network to know about other nonprofit resources that exist that can help them serve their patients better and for patients and families to know about those opportunities directly. And then we move into the actual conference itself. Again, it features some keynotes, it features breakout sessions, it features time in every center participates in a specific learning lab based on where they are in their journey with the network. So then the learning labs have their own time together. They break out into different roles. So the physicians break out, the research coordinators break out, the patients break out, the parents and families break out. So it's just a really unique and special time to come together. Because I'd been to past community conferences, I was very excited stepping into this role. And our conference is typically in September. And not only was it coming up in September when I started in this role, but last year's conference was in Orlando, which is one of my favorite places to be. And so I was super excited about that. And I'm really proud of the fact that one of the things that we were able to accomplish this year was to bring a little bit of a different and new energy. Pre-pandemic, when Dick was here, there was a level of playfulness and fun to the conferences. And they were very, very good post-pandemic. I don't want to suggest otherwise, but we tried to do something more exciting and energetic for the kickoff to get people really enthusiastic and invested. We had a video, we did a big entrance to some music. I had our pack, our patient advisory council chair, run an icebreaker from the stage. She'd never done something like that before, stepped on stage and talked to 250 people and run an icebreaker. And it went really, really well. And probably the most rewarding thing from that, we had a parent, she came up to me at the conference and introduced herself. I was really happy. I'd actually known her name for years. So I was really thrilled that she came up and talked to me for a few minutes. And so we set up time to talk after the conference when things weren't chaotic and I could have a conversation with her and learn more about her experience with the network. And she said to me, she said, I'm kind of a quieter person. I don't always put myself out there. And so I'm sorry that I just like approached you and started talking, like, no, I'm so glad you did. She said, okay. She said, because the way you started that conference made me feel like I could come talk to you. It created a space that made made it feel like this was a welcoming, fun, open environment. And it and it made me feel like if if y'all could walk into music and tambourines and cowbells, she mentioned the cowbells. She said, I knew that you were someone I could just approach. And that was everything I needed to hear.

SPEAKER_03 47:25

So it's nice to hear that. When you put your heart into something like that and it's well received, or the intention that you put into it was actually what was received.

SPEAKER_01 47:32

Yeah. It was so fun because when I stepped in and I said to the conference planning team, I'm like, okay, so here's what I'm thinking. Like, I like did a run of show. I'm like, so if we could have this video, like a hype video, like think a basketball game or whatever. And people getting really excited and building the momentum and enthusiasm. And then I want to get people out of their seats. So we're going to come in to we ended up using September by Earth, Wind, and Fire because it was September. It's a very good upbeat song. And I had the whole team come in and we did. We had tambourines, somebody brought cowbells. It was great. And then again, we did the icebreaker, which I don't know that they've done that before quite in that organized setting. And I actually had to like quiet people. I was standing on the stage going, okay, at what point am I going to bring this back in? Because they were having so much fun doing this icebreaker that our that our patient leader planned. And yeah, anyway, I said all this to them. And I'm like, you guys, if I'm like way off base here, just tell me. Like, I know this may be crazy. It sounds really good in my head. A lot of things sound really good in my head. And then when you actually try them out, they are like really embarrassingly bad. And they're like, no, let's do it. And we did it and it was great. And it was in large part because they were so receptive and they said, let's do it. And they ran with it. And I mean, how lucky am I to work with a team like that? That's amazing.

SPEAKER_03 48:48

Unfortunately, it is time for me to ask you the last question. And that is, what is the one thing you want the IBD community to know?

SPEAKER_01 48:54

I think the most important thing for the IBD community to know is that there are many passionate clinicians, specialists, patients, parents who want to make a better world for IBD patients. And there are many, many ways for people to be involved in that work. And it's critical that IBD patients themselves are centered in that work and that their voices, their stories, their lived experiences are at the heart of the work that's happening on their behalf. And just that they are aware that there is a community that surrounds them that wants to empower them in that journey.

SPEAKER_00 49:36

That is lovely and perfect. Thank you. Thank you so much, Becky, for coming on. Thank you for sharing all this information about improved care now. I think, like I said, we've had some folks on that have are part of it, but haven't necessarily delved in. So this is, I think, going to be super important for people to hear. And hopefully you'll have some more people stepping forward to get involved and to get excited about this work. So thank you so much for joining us. Thank you, everybody else, for listening. And cheers. Cheers, everybody. Thank you. If you like this episode, please rate, review, subscribe, and even better, share it with your friends. Cheers.