Hello Friends 👋
We are thrilled to announce the release of the latest episode of The Incubator Podcast. This week, we have a special episode in store for you as we spotlight the remarkable work carried out by the Children's Hospital Neonatal Consortium (CHNC). Joining us are three incredible guests: Dr. Jackie Evans, the current executive director of CHNC; Dr. Karna Murthy, chair of CHNC; and Dr. Theresa Grover, a CHNC member and Director of the NICU at the Children's Hospital of Colorado. Tune in to discover more about the CHNC database, the impactful research already published by CHNC, and gain insights into what the future holds for this dynamic collaborative. Don't miss out on this inspiring episode! 🎙️
Find out more about the CHNC at: https://www.thechnc.org/
You can get in touch with our guests via email:
Jackie Evans: firstname.lastname@example.org
Theresa Grover: email@example.com
Karna Murthy: KMurthy@luriechildrens.org
Check out this presentation about the CHNC:
The transcript of today's episode can be found below 👇
[00:00:00] Ben: Hello everybody. Welcome back to the incubator podcast. It is Sunday. We have a new interview for you today. Daphna, how's it going?
[00:00:07] Daphna: I'm doing great, buddy. I love interview day And I think we learned a lot at this interview
[00:00:15] Ben: Yeah.
[00:00:16] Daphna: what the CHNC does
[00:00:17] Ben: Yeah. We have a special interview with a few members and important people from the CHNC, the Children's Hospital Neonatal Consortium. If you don't know who they are, your, our guests will tell you who they are. Um, you probably read some publications coming out of this group. So, uh, that's for sure. Do we have any incubator announcements, uh, Daphna?
[00:00:38] Ben: Before we, uh, before we talk about who the guests are for today.
[00:00:42] Daphna: Not unless you wanted to Remind people to save the date for the Delphi conference
[00:00:48] Ben: Yeah. The Delphi conference is September 23rd to 23rd. Five, 2024. So, uh, yeah, cause if you're listening, you're like, then that's over, but no,[00:01:00]
[00:01:01] Daphna: That's right now So we're a year away
[00:01:04] Ben: year away. Uh, and we're having some, uh, yeah, if you want to recommend somebody for, for speaking at Delphi that you think would be great, send us an email.
[00:01:13] Ben: Uh, we've already received a few to respond to them. Actually, I haven't responded to these people, but the inbox and, uh, yeah. And, um, if you are. Not a native English speaking person. You speak other languages. Check out some of our other incubator podcasts. We have some very cool interviews, um, being recorded both in Portuguese, in Persian, in Farsi and in French, uh, and more to come in Spanish.
[00:01:40] Ben: So that's very exciting. Okay, then. We have three guests on today and, um, I'm going to go, um, in alphabetical order, I guess. Um, our first guest is Jacqueline Evans, Dr. Jacqueline Evans. She is the executive director for the children's [00:02:00] hospital neonatal consortium. And by the way, these people with, these are people with very long.
[00:02:06] Ben: bios and pedigree, like Jackie has done a ton of amazing stuff, but it would take us 20 minutes to go through each guest
[00:02:13] Daphna: we're giving the abbreviated
[00:02:15] Ben: Yeah. And, and, and she's, and she's really, and the reason I'm, I'm, I'm highlighting this particular aspect of her bio is because that is the capacity in which she is joining us today really as the executive director of the CHNC.
[00:02:27] Ben: We're also joined by Dr. Karna Murthy, the chair, the current chair of the CHNC, and finally we're joined by Teresa Grover, Dr. Teresa Grover, is a member of the CHNC and is the NICU medical director at the Children's Hospital in Colorado. So without further ado, please join us in welcoming our guests to the show.
[00:02:55] Ben: Jacqueline, Karna, Teresa, thank you so much for being on with us, uh, this [00:03:00] morning.
[00:03:02] Jacquelyn: Thank you for having us.
[00:03:05] Ben: Um, we're, Daphna and I are very excited about, uh, this, uh, episode and about the upcoming CHNC, uh, meeting, but I have a feeling that there are some people listening in the car who are saying CNCH what? And so for the people who are not familiar with, um, what the CHNC is, um, what it's, uh, the, the, the, what it stands for, what is its, uh, goals and mission. Can, uh, can one of you guys, uh, bring us up to speed?
[00:03:38] Jacquelyn: I'll, I'll take that. Um, the CHNC actually stands for Children's Hospitals Neonatal Consortium and uh, we uh, wrote that out on the back of a napkin one time early on in the days when we were forming and, and um, that's how we got that name, which were a little [00:04:00] bit outgrowing, but um, Uh, our organization started definitely as a grassroots organization around 2005 2006 and we had, um, seven, uh, Children's Hospital sites that were interested in, uh, getting together and talking about how we care for babies, uh, that land in Children's Hospital NICUs.
[00:04:23] Jacquelyn: And, um, that's where the name came from.
[00:04:27] Ben: So many things happen on the back of napkins these days. Um, and so. So when it started in 2006, is that correct?
[00:04:40] Jacquelyn: Yes, there was some background to that, too. Yes.
[00:04:44] Ben: tell us, tell us
[00:04:45] Daphna: us.
[00:04:46] Jacquelyn: Yeah, so, I think, you know, it, um, it, it started for me when I ended up being the medical director in the NICU at Children's Hospital of Philadelphia. And I had done [00:05:00] Neonatology for, um, 15 years before I arrived in Philly, uh, but that NICU was very different.
[00:05:09] Jacquelyn: And, uh, um, I'd always worked in larger NICUs. I'd seen a lot of babies with, You know, uncommon disease, but that NICU at Children's Hospital of Philadelphia, it really had no normal NICU babies, almost no normal NICU babies. And, um, uh, when I became the medical director, I began thinking about, you know, we know we're, we're, we're learning a lot about preemies, and, uh, there's randomized trials going on.
[00:05:40] Jacquelyn: Um, with, you know, with those babies that you commonly think of as NICU babies and common diseases like birth asphyxia and so on. But really, how do we know that we're doing the best care for this group of babies, um, with uncommon disease or, or with, you know, [00:06:00] very severe complications of more common disease?
[00:06:03] Jacquelyn: Um, because we're all, you know, these babies often land in large regional NICUs. And We all think that we're the best, um, but what little info we had, you know, really looked like there was a lot of variation in care, um, and we didn't have much information on outcomes, but even then when we looked at things like mortality, there was a lot of variation.
[00:06:28] Jacquelyn: So it was... Kind of like, okay, well, I began, Karna was a trainee at CHOP at that time, and we began talking about, you know, this issue, and like, how would we think about improving care for this group of babies, or at least knowing, are we giving good care? or not. And so that was when we began thinking about, okay, well, the way to start this seems like we get together a group of clinicians [00:07:00] from these, you know, very large regional NICUs, in freestanding children's hospitals was what sort of we targeted at that time, um, to try to understand what, what, what we're doing.
[00:07:15] Jacquelyn: Um, so that's, that's how it started.
[00:07:18] Daphna: Well, that's a very helpful story. It was actually one of my questions was, you know, what were the problems that you guys were trying, uh, to solve? And, um, so it sounds like you wanted to get together and discuss some of these major problems and you touched on the, the concept of variability. Um, and I, I'm wondering, Kind of what was the mission at that time?
[00:07:41] Daphna: What were you hoping to accomplish? And how has the mission and the priorities for the CHNC, um, changed over the last few decades?
[00:07:52] Jacquelyn: Well, the mission really from the beginning was to, um, improve care for babies, um, [00:08:00] in children's hospital NICUs. And it wasn't really meant for only children's hospital NICUs, but for babies with these, you know, more uncommon and sometimes rare disease. Um, complex disease and I don't think that our mission has changed, um, but I think we, we started like when Karna and I began thinking about this, we were really thinking about, you know, let's, let's get some data, let's put together a registry and, and figure out, you know, try to figure out what's going on.
[00:08:29] Jacquelyn: And I think what, what has happened since is that. You know, we have the database and that's very important to us and to our mission, but, um, almost as important is that this has ended up being a forum for, uh, clinicians and nurses who are caring for this population of babies. And so a whole bunch of other activities, uh, grew up around this.
[00:08:57] Jacquelyn: Um, You know, just [00:09:00] getting this group of people together.
[00:09:03] Karna: I was at the end of training at the time and I was always just struck by how all of the things I was learning was about what happens at one center. In our place, and I was always just wondering, gosh, is this the only way or the best way, or could there be a better way to counsel families to care for babies, and that was nothing against where I was training, it just, you knew that everybody's experience based on just that their own experience and, and that was a very fundamental piece of why I dove into this.
[00:09:40] Karna: Uh, idea to try to expand how we thought about variability and knowledge and recognizing that not all variability is bad, right? Some, some good ideas are out there. We just have to find,
[00:09:57] Ben: Yeah, I mean, that definitely goes back to one of the things [00:10:00] that terrorizes you as a fellow, which is that you, you see your attendings coming from various institutions and they all have a style and you're like, man, I'm going to also have my own style based on where I trained and I'm going to go to another place and I'm going to have to adapt.
[00:10:14] Ben: And there's really that fear of. Knowing that there are so many different ways of doing the same thing and just hoping that that you have the knowledge and the know how to just adapt to a new settings and your environment. So I totally hear what you're saying. Karna and Jacqueline about, um, understanding that variability.
[00:10:32] Ben: Um, I wanted to go back to a concept that I think. Many of our listeners, especially those outside the U. S. May not be so familiar with and you guys have talked about Children's Hospital. Um, and I think that's a concept that's kind of difficult to wrap our heads around because the Children's Hospital makes sense in terms of understanding that this is where Children are being cared for.
[00:10:52] Ben: But can you talk to us a little bit about why that concept is important, especially in the U. S. Where you could have places that are not Children's [00:11:00] Hospital, but yet have Nick use. You could have Children's Hospital where they are both adult and Children's Hospital. And children being cared for. So you could have a delivery service.
[00:11:08] Ben: You could have a very high level NICU, but you could also have children's hospital with no adult services. So no OB services and relying entirely on outborn population. And I think that's an important clarification and in distinction that we probably need to make. Uh, can you guys walk us through how, what are those terms and how do we define them?
[00:11:30] Jacquelyn: I'm happy to, uh, take that. Um, you know, I think one of the things when we started was that, uh, we really didn't want to replicate or compete with what was already going on in the NICU space as far as data. Um, and then, you know, like NRN, Um, Vermont Oxford Network. Um, and so we really, we really wanted to focus on that group of babies that wasn't receiving much [00:12:00] attention as far as, okay, what's the best care?
[00:12:02] Jacquelyn: Um, often there's not enough. for those babies, certainly there's not enough for those babies at any one center to do randomized trials. Um, but even when you put 10 centers together, there's often not enough for some of those diseases. So we, the, we actually reached out to, um, you know, other leaders at other children's hospitals and they were all freestanding children's hospitals at that time, just because.
[00:12:28] Jacquelyn: Again, we didn't want to compete with Vaughn. Vaughn does a fantastic job. We, we wanted to kind of look at that different population of babies. And some of those babies certainly are in many other NICUs too, but perhaps, you know, don't demand as much attention as, as, as the preemies. Um, and so that, that was really.
[00:12:55] Jacquelyn: The way we started is looking only at freestanding children's [00:13:00] hospitals, and at that time, really, virtually no babies were born in those, um, children's hospitals, and babies came for other higher level services, you know, specialties, surgery, neurosurgery, that, that sort of thing that might not be available and in very big, highly functioning, Thanks level threes, uh, hospitals that were level three NICUs that weren't in a children's hospital.
[00:13:26] Jacquelyn: Um,
[00:13:27] Ben: I'd love to get uh, I'd love to get Teresa involved as well. We haven't heard from you, Teresa, yet. I'm just wondering, in your opinion, following up on what Jacqueline just said, um, the deliberate nature of the CHNC to really look at children's hospital where, uh, we're talking about freestanding children's hospitals with, uh, a population that is coming solely from the outside.
[00:13:49] Ben: Um, Can you tell us a little bit about what this direction really does in terms of what the CHNC and its database are looking [00:14:00] at, uh, in terms of outcomes? And as Jacqueline mentioned, you guys really had a conscious decision not to compete with Vaughan, and so I think then following up on that, then how does that group of hospital allow you to look at what, what kind of data are you now able to look at, uh, that makes it so special?
[00:14:20] Theresa: of course. Um, so I think since the very beginning, we recognized that the, as Jackie mentioned. Patients that are in our Level 4 or Children's Hospital NICUs are a different group of patients. So, I think they're different from the patients that we see at our university hospital, for example, in perinatal centers.
[00:14:40] Theresa: And it's a group of patients that have, um, in many cases, complex, um, conditions, rare conditions, um, and things that just didn't have a lot of, um, data previously. Um, but what we've really realize is that collectively we, you know, can definitely generate a huge volume of, [00:15:00] um, information about these patients and really start to begin to learn about those patients.
[00:15:05] Theresa: Um, but what is interesting, I think, is from a data perspective that, um, the difference between those populations is very important. So previously, you know, most of the data that was available for really focused, as we said, on the preterm population or the you know, typical conditions that we see in neonatology.
[00:15:27] Theresa: And what we didn't rec, what we didn't have was, um, data that allowed us to benchmark, um, for these patients that had rare conditions. Um, and so now we have collectively enough information that we really, um, you know, can start to compare. I think internally, each of us, as we said, you know, at our own center.
[00:15:47] Theresa: Hopes we're doing a good job, thinks were doing a good job, but we really just didn't have that data. Um, and the, the benchmarking data that previously was available really focused on the, uh, preterm outcomes. So [00:16:00] things like R O P N E C. BPD. Um, and what's different about children's hospitals is that because most of these patients are outborn, they're referred to our hospitals for management of those conditions.
[00:16:12] Theresa: So we really could never use those, um, as outcome measures for our patient populations. And I think that that's really the, the big difference that we really had to develop new, um, outcome measures for our patient
[00:16:24] Ben: I think that's very interesting because when we study for boards and we read about all these interesting pathologies, you look at the incidents and you're like, huh, that's quite rare. One in 10, 000, one in 16, 000. And I think that from that standpoint, the point you're making is so valuable because. As a freestanding children's hospital, you are more likely to deal with these rare conditions, but yet it's still not enough to feel like you have enough of a sample size and say, Oh yeah, we take care of so many of these, these rare pathologies on a yearly basis that we know exactly what we're doing.
[00:16:57] Ben: And so whether it is [00:17:00] things that are relatively. bread and butter neonatology like gastroschisis and things like that. So I think the idea that the CHNC is allowing institutions to collaborate on this level and create a sample size that is so much larger makes the possibilities for collaboration and research so much more interesting.
[00:17:19] Ben: Um, can you give us some examples of where really pathologies that would have been Horrible to, to, to study as a single center were made much easier and maybe have yielded interesting data because of the CHNC collaboration and the banding of all these hospitals together.
[00:17:38] Theresa: Sure. Yeah, I think, um, probably the easiest way to, to answer that, um, is to discuss our focus groups that we have, um, developed within, um, the CHNC organization. And so back in, I think it was 2013, we first started with, um, five different focus groups that were disease specific, but we've expanded now to, I think, 27, [00:18:00] um, focus groups that are related to different conditions, different things like neonatal resuscitation, palliative care, um And each of those groups has, um, focused on, um, either clinical outcomes research, education components, quality improvement, um, within that.
[00:18:18] Theresa: And we have really, um, I have really, um, given us quite a bit of, um, interesting information that we didn't have previously. And I think some, um, Um, examples of that are things like, um, for example, in congenital diaphragmatic hernia, we now have in the data set, I think somewhere around 3, 500 patients with that condition.
[00:18:40] Theresa: Um, and we were able to find, um, in one study that, for example, the risk of bacteremia in the first week of life was. extremely rare. So less than 0. 1 percent of the patients had bacteremia. And so we challenged among our own institutions, whether, you know, the practice of just using standard, [00:19:00] um, antibiotics at delivery for most of these patients made sense.
[00:19:03] Theresa: And, um, that now, at least with most of our CHNC centers, that, that practice has been challenged and we're really just targeting antibiotics for specific reasons, um, and, and not doing that routinely. So I think things like that have been, um, really valuable, um, and I think have changed practice. I think we've also found things like, um, within the NEC focus group that there's really this striking difference in the, um, antibiotic duration and the length of NPO status, um, after both medical and surgical NEC, um, because we don't know what the right answer is for the management of those conditions.
[00:19:40] Theresa: Uh, but we found that the length of the antibiotic course was associated with, um, adverse outcomes like longer length of stay, longer time to full feedings, um, and we're hoping to use that, those, um, data to then help develop clinical guidelines or to really inform how we practice.
[00:19:57] Daphna: And I think that's so interesting. I think, [00:20:00] like you said, the, the focus groups have then been able to parse out some of this data to find, um, really areas to target for improvement. So how does one go from a focus group to, um, one of your kind of other logistical setups, which it looks like is, are the QI collaboratives?
[00:20:22] Theresa: I'm going to take that question as well. Um, so we have a really fantastic QI program, um, within CH& C, um, as well, and have developed a really nice infrastructure to, um, do, um, multi center, Um, QI collaboratives, uh, we have focused on, a lot of the topics have been, um, perioperative care because we know that that's, um, a group of patients that is unique to our, um, population, um, that hasn't really been addressed, um.
[00:20:50] Theresa: You know, in as much detail, um, we're on our sixth, um, now large scale collaborative, um, and, um, we have 35 percent [00:21:00] participating centers. So we can do, really impact a lot of babies by, by the QI program as well. Um, there have been some of the focus groups who, um, also have done smaller scale, um, QI initiatives.
[00:21:12] Theresa: Um, I think, for example, the resuscitation focus group is working on debriefing after code events and improving how we do that, um, you know, at our individual centers as well. Um, but I think, you know, just like the focus groups, I think within the QI collaboratives, we just recognize that there's so much expertise and knowledge out there, you know, to share and it's been really fun and exciting to develop a platform where we can really interact with one another.
[00:21:38] Daphna: I'm always curious as to, um, when we have big data sets and we have a lot of centers collaborating, a lot of, um, voices involved, um, how do y'all set priorities for what the consortium will focus on at any one given time?
[00:21:56] Jacquelyn: Oh, that's been a challenge, I think. And, [00:22:00] um, you know, it's, uh, we're, we're growing rapidly. We, we really have, I think, um, kind of evolved definitely from a bottoms up, um, perspective, and really let a lot of the um, focuses come up from our membership. Like really all the focus groups have, have sort of bubbled up that way.
[00:22:24] Jacquelyn: We have 800 diagnoses, and um, most of the focus groups are either diagnosis based or intervention based, and, and really that's come from our membership. The quality improvement programs, we've really tried to, you know, if possible, like it's, it's challenging to do a QI on gastroschisis. But if we can pick, you know, pop it, you know, a population. or something that happens to quite a few of our babies, like having surgery, which happens to [00:23:00] almost a third of our babies, and often multiple times. Um, that's sort of how we've tried to do the, you know, target the quality improvement projects to impact a large enough Number of babies at each at each site.
[00:23:13] Jacquelyn: Um, but going back to the original question is yes, it's been hard to keep up with what that membership wants to do. In fact, our first partner that really, you know, helped us get launched sort of had no idea what Pandora's box. This was going to be, um, and, uh, you know, in large part because we wanted to support all those things.
[00:23:34] Jacquelyn: We. You know, we ended up going out on our own about six years ago.
[00:23:40] Karna: it is. It's magnificent. Magnificent. Yeah.
[00:23:42] Ben: add something? Maybe
[00:23:43] Karna: just, I think the priorities are hard. We've tried to create tools that are fairly versatile so that our membership can, you know, take advantage of sort of a self serve billing station of data that they might want. To log in to [00:24:00] compare how maybe their centers outcomes and diseases of interest compared to the consortium or other centers, um, that that model has been, I think, fairly fruitful to help centers pick off the data that they want.
[00:24:16] Karna: And of course, we're supporting many other more to investigative projects. And those are our focus. Gosh, we just try to do as many and as fast as we can to keep the priorities going, because uh, there's a lot of interest in the dataset, which is fantastic, and that's been a lot of fun. And Teresa's alluded to some of those great projects, and hopefully there's more, uh, coming soon down the pipeline.
[00:24:39] Ben: Karna, I guess I'm going to follow up with you. Um, when you guys established the CHNC and you are reaching out to the first few centers, what's the reaction like? Is this enthusiasm? Is it like another data collection task that we're going to have to do now? I'm just curious as to, did you guys hit the ground running or was it really slow to get people [00:25:00] to see the vision that you guys had for the CHNC?
[00:25:03] Karna: Yeah, this is reaching back a few years for sure, but um, back then, you know, I think Jackie and I, when we were top calling centers and talking to colleagues or friends of colleagues, The initial reaction was really quite high for the enthusiasm to develop this project to develop a shared data model for these rare patients.
[00:25:26] Karna: Um, then a few years of toiling through what should we collect and how should we collect it, I think was very instructive for us and the initial groups to understand what kind of undertaking we were going after. And, um, you know, one of our former colleagues would always tell us. What are you going to do with this data point?
[00:25:48] Karna: And are you sure we can collect it? And she was very economical in her recommendation. But yes, I think the, I think the harder parts came when. [00:26:00] came time to, and here's what we want, really develop that into a data set, garnering resources from hospitals to help us make this happen.
[00:26:08] Ben: So from the time you guys are, are thinking about, uh, this idea, which she said, maybe the inception of it is around 2006, the actual database, uh, doesn't launch until 2010, which in today's terms feels like decades later.
[00:26:25] Theresa: hmm.
[00:26:26] Ben: I am, uh, I'm wondering, um, what was, um, what did it take? To actually reach the point where you guys launch the database and, and what, what, what was the, the, what was the buildup really to the, to the, to the release of the database?
[00:26:47] Ben: Um, Jackie, if you, you're smiling, I'm assuming you have, you have some cool stories to
[00:26:52] Jacquelyn: Yeah, I mean, Karna and I were in kind of the, in the trenches there for that. There, there was a lot of [00:27:00] enthusiasm. Uh, we knew and, you know, I don't think we really ever would have, uh, gotten going if there hadn't been a lot of enthusiasm. Because again, we were, we weren't trying to recreate the wheel. Um.
[00:27:14] Jacquelyn: But there was just so much enthusiasm that, that it's, it's been kind of like hanging on to, uh, uh, a comet, the end of a comet, to be honest, but, um, I think one of the things that we realized is that we needed to have a partner to help us establish the registry, um, and we also needed money. Um, and those sort of went together and we, we spent a couple years trying to find a partner and we went to, um, you know, we went to a number of organizations that you might guess and a few that you might not, um, but, uh, in the end, um, an organization called the Child Health Corporation of America, which was a, [00:28:00] For profit organization owned and run by CEOs of a number of children's hospitals.
[00:28:07] Jacquelyn: I think around 50 children's hospitals sort of took us on and thought that you know, what we had for our mission was worthwhile and, and, uh, they really got us going. Um, and they built the database for us and infused a lot of, uh, time and resources for us to get things going. And that's, that's kind of what took the time.
[00:28:31] Jacquelyn: I mean, also we Didn't think we should collect any data unless we had good data definitions and, and that all just takes a long time. I don't know, Karna, do you want to talk further
[00:28:44] Karna: Right, and I think another thing that struck me is the enthusiasm was so high that 20, 30 people who invested themselves did so completely voluntarily. And so everyone had their clinical load and was [00:29:00] so willing to Um, all sorts of time to write definitions and think about data fields, think about how they were structured in a relational database, but you know, without getting too much in the weeds, we were just so very grateful for everybody's efforts.
[00:29:19] Karna: Back then, and that's maybe why it took a little bit longer than maybe, um, this generation would think those four years were, like, as you mentioned, Ben, but, uh, we're just so very grateful and happy that, uh, so many thought this was a good idea.
[00:29:33] Ben: And I didn't say this in a negative way, by the way. I just, for example, you see how Facebook,
[00:29:38] Daphna: that's quite quick, frankly,
[00:29:41] Ben: yeah, but I
[00:29:41] Theresa: This predated Zoom, so we didn't have Zoom back then. So this was in person meetings of a lot of
[00:29:47] Ben: Mark Zuckerberg should have waited a bit longer before launching his new, uh, social media and learn from the CHNC.
[00:29:54] Daphna: But I, I think that, uh, to, I mean, you had a, it sounds like a lot of initial [00:30:00] excitement, but there's definitely something, um, about your organization that has allowed it to continue to be successful, um, and gain so many members over time. Um, it sounds like you have a lot of resources that you, um.
[00:30:12] Daphna: offer hospitals who are engaging with the work. Um, and it sounds like you're really trying to empower centers. So correct me if I'm wrong, but anybody can query the database. Is that correct? And right at any, at any given site. Um, and so it sounds like you guys have done a lot of work in, in giving people a lot of. independence where they may not have had that opportunity if they weren't, um, part of the consortium and, um, uh, access to some of the, you know, multitude of resources that you guys have.
[00:30:51] Daphna: Maybe you can describe some of those things.
[00:30:55] Jacquelyn: Yeah, I think, I just, and I want [00:31:00] others to talk too. For me, um, the organization has developed, and this really started from the get go as a, um, A culture where really the people that were involved, as Karna said, there was a huge amount of volunteer time and it was really dedicated to, you know, fulfilling our mission and not around sort of self interest so much because we weren't going to get any publications out for, you know, five years and that and that sort of thing.
[00:31:33] Jacquelyn: And, and that's allowed us to do that. That culture, I think, has allowed us to do a lot of things. including the fact that we have developed a huge amount of transparency, um, so that, you know, somebody from one site can go in and see what the mortality is, um, for, you know, a very specific disease at another site.
[00:31:55] Jacquelyn: And that, that was a journey that we took, but, you know, required a lot of [00:32:00] trust and, and, um, you know, belief in that this was the right thing. To do, um, as far as the resources, you know, we just keep trying to add resources as, as, as we can. We actually function without any staff until 2017. And, uh, you know, that, you know, again, like, like kind of said, it was just with an awful lot of.
[00:32:29] Jacquelyn: Volunteer time from, uh, you know, fairly in the end, a fairly small group of people, um, we are, you know, we have been able to add a lot of resources over the last six years, and we continue to need to add those resources because our membership just wants more and more, um, and we want to give more and more.
[00:32:51] Jacquelyn: One thing, Karna and Theresa spent a huge amount of time on the, you know, research side, but it's a bit of a bottleneck. There's, [00:33:00] you know, there's more, there's more projects that people want to do and, um, we've only had that research database going three, four years now. Um, and it needs more resources, but right now it's all that we can afford.
[00:33:15] Jacquelyn: So, um, we always feel like we're catching up. Uh,
[00:33:21] Ben: this kind of momentum, it does always feel like you're catching up and you're always trying to add one more thing every time trying to get a little bit better. Um, all the time, I think, um, people should definitely reach out to you guys to find out a little bit more about the benefits that each member gets.
[00:33:35] Ben: I think the, the kind of, um, data, um, visualization tools that you guys are using, whether it is Tableau or, um, other, other softwares like that are really allowing the. The members to really get a good grasp and a good visual of how are things going for specific queries in terms of pathologies and so on.
[00:33:55] Ben: Um, and I think, um, Teresa, I'm going to direct this question to you. I think we were [00:34:00] talking earlier about how there is VON and there's the network can you tell us a little bit about some of the things that you guys are trying to do in order to partner and collaborate with these other groups and collaboratives?
[00:34:12] Theresa: We definitely have engaged with a lot of other organizations and, um, and that's important to us. We don't, you know, want to be completely independent. We want to, you know, leverage. got to work with other groups. Um, we've worked with groups like NAFNT, the North American Fetal Therapies group, um, CDH Registry, the BPD Collaborative, um, many of those other organizations, um also, um, in, and they're trying to learn from those organizations, Not only how we can improve, but, you know, they may have some other expertise that, you know, combine two nicely with what we can do.
[00:34:49] Theresa: Um.
[00:34:51] Ben: Can you tell us a little bit about the, um, because I think you guys are also exploring a variety of opportunities that this platform has [00:35:00] given you. Most like, most importantly also when it comes to education and some of these educational tools that you guys are providing. Can you tell us a little bit about that?
[00:35:09] Theresa: Sure, yeah, I think, you know, we recognize that, you know, almost every center in CHNC is an academic center. Um, we all have, you know, neonatal fellows and, and recognize that they're the next generation and that we really want them to be engaged and, um, and to participate. Um, and we've. Um, to expand those opportunities quite a bit in the last couple of years.
[00:35:30] Theresa: Um, fellows are absolutely, you know, encouraged and do participate in focus groups, which is such a great opportunity for them to, you know, get to know, you know, leaders in these fields and get to know other neonatologists across the country. Um, we've partnered with T. Can, um, and have representatives from that group that are also working with us, um, to help us understand, you know, what, trainees need and how, how we can best serve them, um, as well.
[00:35:58] Theresa: Um, and we also [00:36:00] developed a fellow research, um, award. Um, we're in our third year, um, of that now, um, where we, um, it's a competitive grant program, uh, where fellows, um, are chosen to, um, to, um, do a research project, um, using the data in, um, CH& D, um, in the data registry, um, because we recognize that using large data from these registries really is a unique, um, skill set, um, so we think it's a really great opportunity for the fellows to learn how to, um, use this data and understand how to pull data out, how to understand that and different analyses and things.
[00:36:39] Daphna: Um, Karna, I was, um, wondering, we've talked a lot about, um, the QI initiatives and, um, obviously there's, um, I can tell from the website and a lot of, uh, the pillars of, of, you know, what's important to the consortium, that multidisciplinary, uh, collaboration is a priority. And [00:37:00] obviously we know we can't get anything off the ground in the unit unless we have all the stakeholders at the table.
[00:37:06] Daphna: And so I wonder how, um, you're able to get some of those champions, um, from across, uh, the NICU team.
[00:37:16] Karna: Question. I think, um, gosh, our Q. I. Collaboratives have been sort of written that book of how to how to extend the collaborations around a common goal, whether it was reduction of collapses back in the early days or postoperative morbidities or successes, pain control, um, for our Children who received operations or whatever.
[00:37:40] Karna: Um, those QI groups have just done a wonderful job pulling in anesthesia and surgery and nursing and other physicians and different disciplines to create a common improvement goal. On the research side, I think I've been just pleasantly, more than [00:38:00] pleasantly surprised of how our surgical colleagues are interested in our data.
[00:38:04] Karna: How cardiology colleagues are willing to participate, depending on the question, it's all topic based, right? And we just have had a lot of publications, presentations, white papers, surveys that, you know, many different disciplines around the country have been able to participate. And I think that's just fantastic to, uh, to have.
[00:38:28] Karna: And that informs the database for a future iteration that informs how we deliver care and. Probably even helps how we counsel families because people start speaking the same way. Um, so I think it's been great.
[00:38:43] Daphna: I totally agree with that. And before we're getting to the end of our time together, we want to be able to talk about the symposium that is upcoming. Um, but before we do that, you guys have this wealth of expertise in having kind of pioneered this. in, in [00:39:00] overseen it, um, over all this time. Um, I wonder what are your words of wisdom for people who are trying to take on kind of multi center projects, um, and just, Being brave enough to start something innovative. ,
[00:39:22] Jacquelyn: I'll, I'll start, I want to hear from the other two, but I think that, um, you know, again, engagement is the key, um, and get, get people engaged, uh, uh, at what they're interested in is, is really what makes it all happen, kind of Teresa.
[00:39:46] Theresa: Yeah, I would agree with that. I mean, I think these, these organizations take an enormous amount of time and energy. Um, but it's what I think we all want is, um, clinicians, academicians, I think having that, [00:40:00] um, group to collaborate with. And, um, so. very much I think the, the activities of this organization have been really dictated by the membership and getting those folks engaged, like Jackie said, Um, to lead these opportunities.
[00:40:16] Theresa: Um, it's really been, I think the reason for the success.
[00:40:21] Karna: On my end, I'll just, just lean, I'll zag a little bit and say, I was, uh, Daphne, one of the first things you said is what is the problem you're trying to solve? And there was a clear gap in our field that we wanted to try to go after and improve. And that, along with just outstanding colleagues and mentorship, uh, two of which are on the call with me, Jackie and Theresa of course. But, uh, that was really how we, I can say how I kept fuel on this fire broke
[00:40:55] Ben: I have definitely gonna kill me, but I have a very philosophical question to ask before we dive into the symposium. [00:41:00] Um, we've talked a lot about in the neon in the in neonatology about regionalization of care and centralization of care. And I'm wondering, what are your thoughts? And we can go one by one and you can share your thoughts.
[00:41:11] Ben: Um, um, do
[00:41:13] Daphna: I had that question on my list and I took it off just so you know.
[00:41:17] Jacquelyn: it's a piggy. Mm hmm.
[00:41:19] Daphna: late now.
[00:41:20] Ben: not getting the credit for this question. But when you're looking at the CHNC, right, you guys began really looking at, at freestanding children's hospital. But do you think that the opportunity to collaborate on such a large scale through a collaborative like the CHNC is, uh, going to, uh, potentially lead Non children's hospital to maybe want to take part in those kinds of initiatives.
[00:41:42] Ben: And do you think that in the future, the CHNC could look at including other kinds of hospital and it's, uh, and it's missed. That's the last tough question
[00:41:53] Ben: of the
[00:41:53] Karna: that's a good one.
[00:41:54] Jacquelyn: Yeah, go ahead. I certainly
[00:41:56] Karna: I think,
[00:41:57] Jacquelyn: that.
[00:41:58] Karna: I hear, I heard two [00:42:00] questions as far as regionalization. I guess the philosophical point I'd make is, um, from an institutional perspective, absolutely all the resources and talent and expertise and experience they're needed. I would just flip that around as a patient.
[00:42:15] Karna: If I, you know, a pregnant mother and parents, expectant parents that have a baby with a problem that's rare and uncommon. It shouldn't matter where they live. They should be able to get excellent care wherever they are, either through transfer or just to know exactly what to do and do it, right? So I think what we can contribute is knowledge and what those things might be.
[00:42:42] Karna: And then the systems are that maybe they have to be regionalized, maybe they'd have to be partially regionalized, but we still want to give them the best out, because it shouldn't matter where they live, right? And you're, uh, yeah, go ahead.
[00:42:59] Jacquelyn: [00:43:00] of the things that a lot of our sites ask us to do is to, you know, set up something for their network because a lot of these hospitals, you know, do lead a network of a number of other NICUs. And, you know, we would very much like to do that. Um, kind of wading into it a little bit just in that our, our, our hospital types are changing a lot, but again, we, we don't want to compete with Vaughn and, um, that's one of, you know, that's what, cause they do such a wonderful job at what they do.
[00:43:33] Jacquelyn: We've actually replicated all
[00:43:41] Jacquelyn: the Vaughn. And so we just have to kind of figure out, you know, what, what the. The best way to, um, to provide, you know, services, uh, to, to other hospitals because certainly many, many other hospitals have all these babies, you know, with these types of diseases to many other [00:44:00] NICUs and, um, you know, we try to share our education that symposium is open to any, anybody from any site that wants to come.
[00:44:09] Jacquelyn: Um, but I think it's something that we have to continue to. To, to work on.
[00:44:16] Ben: So now we can actually talk about the symposium. And I think, um, I was going to ask why the necessity to have a symposium. And the reason I was going to ask that question is because data from the CHNC is wildly published.
[00:44:28] Ben: You guys are collaborators at heart. So you're collaborating all the time. And so I'm wondering at what point in time do you guys feel the need to put together the symposium? And what, what is the vision for that meeting? Uh, for people who are listening, um, the, the, the CHNC, uh, annual symposium will take place this year in Denver, Colorado, and it's happening October 11th to October 13th.
[00:44:52] Ben: Um, so I'm just curious, maybe Teresa, since, since you didn't, yeah, you can go ahead.
[00:44:57] Theresa: Yeah. Yeah, I think, [00:45:00] um, you know, we recognize that, again, this is a unique patient population. There's a lot to, to share, um, within our membership, but also, you know, to others that are welcome to, you know, to attend the symposium. Um, but I think also we have so many activities and so many things that are happening within the organization, um, that it's really a, Great opportunity for the membership to get together to learn about what's happening and that really generates a lot more interest I think every year after the symposium we have new focus groups that develop we have new other activities that people get engaged with But it's also a nice opportunity Um, to share, um, the data from the data registry itself, um, and, um, some of which has been published, some new data that's, you know, still in progress.
[00:45:49] Theresa: Um, but we've also had an opportunity to invite, uh, you know, national and international speakers, um, on topics specific to, you know, surgical neonates and, um, [00:46:00] you know, patient populations that are, um, you know, seen more commonly in our institutions, um, and there aren't a lot of, um, I think, uh, conferences that really address that specific patient population.
[00:46:12] Ben: There's something, there's something, um, underrated about bringing people together in one single physical space and letting them engage, right? Because no matter how much you collaborate, when you sit down around the table and take a pen and paper, that's when real ideas come to life. Um,
[00:46:29] Theresa: Yeah.
[00:46:29] Ben: I, um, it's funny because we, uh, we are going to be in attendance at the CHNC symposium this year, we're going to actually bring the podcast along and, and, and provide coverage of the, of the symposium.
[00:46:42] Ben: And as we, we started speaking to some people about this, many of them have said. This is the best conference to attend. Uh, and they were saying how, uh, the opportunities to collaborate are extremely high and it's the proper proportion of attendees and space. Like sometimes we were saying [00:47:00] that you go to some of these extremely big conferences like PS and it's very overwhelming.
[00:47:04] Ben: You're like, you feel like a fish in the ocean, but Finding the right sweet spot between the size of the conference to give people this opportunity to meet everybody and collaborate is, is really a mark of a, of a team that knows what they're doing. So, um, yeah, we're very excited, um, to join you guys, um, in Denver.
[00:47:22] Ben: I think. We're coming to the end of the episode and I think a lot of people are listening to what we're talking about when it comes to the CHNC and i'm thinking maybe there's some some physicians from a children's hospital like hey like We we need to we need to get on this. Like how do we uh, how do we join the CHNC?
[00:47:39] Ben: I am wondering if you can tell us a little bit about What is the process like to join the CHNC? And you don't really have to go through the entire application process, but a little bit about, um, what are some of the criterias to, um, apply? What is the turnaround time? Like, is it, is it, does it take a year to get into the CHNC?
[00:47:55] Ben: And because for some people that, that, that is an important factor. And then, [00:48:00] um, what kind of, maybe some, some of the highlights of the benefits that a center, aside from all the things that you guys have mentioned already, that could be added, uh, of joining the, the collaborative.
[00:48:11] Theresa: We would welcome anyone who's interested in, um, learning more about CHNC, um, if you can contact us directly, that's the easiest way to get in touch. Um, and you can do that through the website. It's probably the most efficient way to do that. Um, but really the process is, um, you know, we'll. Given, um, informative presentation to understand kind of what all we, um, you know, have to offer and see if it's the right, um, organization for each, um, for each center.
[00:48:38] Theresa: Um, and then when centers, you know, have decided that they want to, uh, join the organization, it's really, um, just a legal contracting. Um, you know, yeah. process that happens between, uh, the CHNC organization and the individual hospital. Um, I think the reason we all laughed when you asked what the timeline is, is that is very dependent [00:49:00] on each institution's legal department.
[00:49:02] Theresa: Um, I think the shortest turnaround time has probably been three months, but, you know, certainly there have been others that are in excess of two years. Um, you know, depending on, you know, because we do collect some PHI in the database and that, that can be a sticking point with some institutions. And so, um, it really depends on the.
[00:49:18] Theresa: on the legal contracting, um, part. But then we have a really, um, in depth onboarding process. Um, we work with, you know, uh, an identified leader at each site, um, as well as the data coordinators. And, uh, we really have a very, um, in depth program, which we haven't mentioned, um, for the data coordinators. Um, with a really robust education.
[00:49:39] Theresa: So they. Very much understand all the data definitions, um, how to obtain the data, where to obtain it. We have a mentorship program for those data coordinators as well. Um, so the onboarding process takes a little bit of time, um, as well.
[00:49:53] Ben: Yeah, because that's another thing that we haven't really spoken about, but, um, in the application process is quite well outlined in terms of, you need to [00:50:00] have a coordinator to collect this data like this cannot be done by the, uh, physician du jour who's just, yeah. Um, and I think it may sound, um. Um, it may sound like a lot of work, but at the end of the day, it's, it's, it's paramount to the quality of the data, because if the data that you're entering into the database is in any way, uh, heterogeneous or compromised, then everything that's going to come out is going to be even, even worse.
[00:50:29] Ben: So, um, but I, I think that when I was looking back at some of the, of the, of the material that, that the CHNC provides, um, while there is a need for a coordinator. That, that job can usually be assigned to somebody who's doing maybe other form of coordinating for other form of database. I don't think that should turn off anybody that says, Oh, I don't want to have to hire a new person now
[00:50:50] Jacquelyn: yeah, I mean, I, I'm glad that the, that the DCs came up because it's the one thing I wanted to say we have an amazing group of data [00:51:00] coordinators. They are incredibly engaged. They have their, their own five subcommittees to improve the data to train each other to support each other. And they really have been a driving force.
[00:51:15] Jacquelyn: Behind the quality of, of the database and they're very enthusiastic group and we, we just, we love them and they, they come to the symposium, uh, two and they have partly their own, their own programming, but they've really, you know, in large part made the database what, what it is.
[00:51:35] Daphna: It's a tough job.
[00:51:37] Jacquelyn: It is.
[00:51:38] Theresa: is,
[00:51:38] Ben: it's, it's tough as you're, you're,
[00:51:41] Daphna: An understatement. Yeah.
[00:51:42] Ben: um, because whoever is putting whatever is in the, in the chart into a database, God bless them because we are as physicians have, yeah, it's, uh, we're not
[00:51:53] Jacquelyn: looking, we're looking at alternatives. Um,
[00:51:57] Ben: um,
[00:51:58] Jacquelyn: slowly getting there.[00:52:00]
[00:52:01] Ben: The last question I have for today is, um, it's impressive to see what the HCHNC has become considering that, uh, how young it is, uh, inception in about 2006, as we said, and, uh, how well established it is today compared, like you said, you, you, we've been talking about Vaughn who are networks and collaborators that have been there for much, much longer, I'm just curious if.
[00:52:26] Ben: I don't think you can predict what the future holds, but where do you wish to see the CHNC in which direction do you wish to see the CHNC going in the next few years? Um, Teresa, you were smiling. I guess I want to hear what you have to say and we can go around obviously afterwards.
[00:52:39] Theresa: Yeah. Yeah, we're really excited about the growth that we've seen. We, you know, have more and more centers that are approaching us that are interested in joining. And, and for us, that's exciting because it not only gives us more data, but also more, um, I think people to collaborate with more people to be engaged in these activities.[00:53:00]
[00:53:00] Theresa: Um, you know, I think we have several areas that we're really hoping to grow over time. I think, um, yeah. Well, Karna, you can speak to your work on, um, risk adjustment. Um, we've got some really exciting, um, projects, um, in the works. I think Jackie alluded to the, um, fact that we're, we're starting to explore, um, you know, computer learning and AI capabilities and what that might mean for the, um, for this organization, which is really exciting, um, you know, to think about what we can do much more rapid and, you know.
[00:53:33] Theresa: Um, so we're really excited about, you know, that potential, but we're also growing things like we have a brand new education committee that's looking at expanding, um, you know, developing educational modules for clinicians, for families, um, journal clubs, things like that. I think, um, there's also, you know, there, there are lots of activities that we're really excited about growing.
[00:53:55] Theresa: Um, and, you know, I think, I think the, the organization's going to [00:54:00] continue to grow for sure.
[00:54:01] Ben: Yeah. And the most exciting thing is that these, these, these opportunities are offering these, these activities are offering opportunities to people to engage with the CHNC. So I think if you're excited by listening to this interview. Um, I think there's definitely room to reach out to you guys and, and get involved.
[00:54:17] Ben: Um, Karna, Jacqueline, any, any parting thoughts?
[00:54:21] Karna: I think, um, you know, to Teresa's thoughts about where we're going, I'd like to see us really, um, entrench ourselves as a, um, backbone for big clinical benchmarking at our hospitals. And some of that requires risk adjustment that we're working on for these rare diseases. So that we can truly learn from each other about how to do things that both make things better, and how to avoid things that maybe are kind of futile, or at least unnecessary.
[00:54:53] Karna: I think that has a huge promise for what we can do. Um, I think I'd like to see us [00:55:00] answer questions, whether that's... Um, that, that probably other groups can't answer, given our sample size, given our reach for these rare diseases, and maybe that's in clinical trials, but it doesn't have to be just interventional things.
[00:55:13] Karna: It could be diagnostic testing. Um, I think we're in a really unique position to do those types of projects going forward. And of course, I agree with everything Teresa said, um, but you know, looking ahead 10 years, I hope that's where we, uh, turn out to be.
[00:55:29] Ben: And when you talk about risk adjustments, cause this is something that came up already twice, and I think you just touched on it, right? You mean modulating the risks for pathologies?
[00:55:38] Karna: Well, you know what? Um, uh, maybe. I think what, what I meant by it is that. You know, we, we right now can very easily compare certain outcomes across centers, um, things like mortality and length of stay and a few others. But uh, like every big data set, many, it's subject to the criticism that my [00:56:00] patients might be sicker.
[00:56:01] Karna: And, you know, we came together with the mantra that, boy, these are all referral based children's hospitals receiving sick patients and rare diseases from their region. You know, maybe there isn't as many differences between us as there are similarities, um, and I'd like to, I think we should be able to show that and probably realize that we're all struggling with the same kinds of sick patients and problems, kind of complicated problems that all the other centers are and just gives us an opportunity to be more collaborative about how we solve them.
[00:56:38] Ben: hmm. Mm hmm.
[00:56:40] Jacquelyn: One thing that we're very interested in just for next year is that we're working with four genetic, uh, um, data companies. And, uh, we are going to get data from them that we will be able to, you know, this will be on a site. by site basis if they want to participate in that [00:57:00] match that genetic data with the other phenotypic data and outcomes that we have in in the database.
[00:57:06] Jacquelyn: I think that's going to be a very exciting new addition.
[00:57:10] Ben: That's very exciting. Um, Jacqueline, Karna, Teresa, thank you. Thank you so much for making the time to be with us today. This was, uh, a very exciting conversation and, and the work you guys are doing at the CHNC is, is fascinating. Um, we're going to reiterate that the CHNC symposium will be held in, uh, Colorado in Denver between October 11th to October 13th.
[00:57:31] Ben: Uh, we will be there covering the symposium. So we look forward to meeting you there. Thank you all so much for making the time to be with us today.
[00:57:39] Jacquelyn: Thanks for this opportunity and we really look forward to seeing you at the symposium.
[00:57:44] Daphna: Likewise, likewise.
[00:57:46] Ben: Thank you.
[00:57:47] Theresa: Thank you.