Navigating pediatric emergency care often presents unexpected complexities for both families and clinicians. Innovations rooted in human-centered care offer meaningful opportunities to reduce these challenges and improve outcomes. By integrating the rigor of implementation science with the empathy of human-centered design, professionals can bridge the persistent gap between evidence-based research and everyday clinical practice. This approach has led to the transformation of outdated tools like the Emergency Information Form into more dynamic, accessible solutions.
On today’s episode of In Network's Designing for Health podcast, Nordic Chief Medical Officer Craig Joseph, MD, talks with Dr. Christian Pulcini, pediatric emergency medicine attending at the University of Vermont Medical Center. We discuss Dr. Pulcini’s journey into medicine, his early interest in pediatrics, and how that evolved into a focused commitment to caring for children with complex medical needs. We also discuss the role of human-centered design in healthcare innovation, and highlight its ability to generate more agile, practical solutions compared to traditional research methodologies.
Listen here:
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Want to learn more from Dr. Joseph? Order a copy of his book, Designing for Health.
Show Notes:
[00:00] Intros
[01:16] Teacher to ER Doctor
[05:05] Implementation science and human centered design
[08:28] Design in action
[13:52] Reimagining emergency care
[22:35] The power of a name
[24:57] Designing with end users
[28:13] Delivering the ICAP in real life
[38:29] Christian's favorite well-designed thing
[40:13] Outros
Transcript:
Dr. Craig Joseph: Doctor Christian Pulcini, welcome to the podcast. How are you, sir?
Dr. Christian Pulcini: Doing well. Thank you.
Dr. Craig Joseph: I'm very excited that I pronounced your name correctly. How's your Italian?
Dr. Christian Pulcini: It's okay. It's right there on the okay spectrum. I can tell you what. I can tell you what Pulcini means. If you're curious.
Dr. Craig Joseph: I'm exceedingly curious.
Dr. Christian Pulcini: Pulcini is the plural for little baby chicks. Our family represents many little baby chicks, which is fitting with my three children.
Dr. Craig Joseph: I like that. I like that. All right, but even if you had no kids, you would still have that name, I'm thinking.
Dr. Christian Pulcini: Indeed, indeed. Very true. Yeah.
Dr. Craig Joseph: Let's talk about something more important. Let's talk about your current situation. You're a pediatric emergency medicine physician. How did you, kind of, become one? And with an academic slant as well? Is this something that you've always wanted to do, or you kind of fell into it?
Dr. Christian Pulcini: It's interesting. I am the only physician in my family, and I'm actually a first-generation college student, interestingly enough. And I grew up in a small rural town, so it depends on how far we want to go back here to discuss how I ended up in this. But I think one of the formative experiences was, is that one of the guidance counselors in high school spoke to me about volunteering at a camp for children with muscular dystrophy, and it was one of those sleepover camps that you attended. Volunteer as a camp counselor.
And I will tell you that experience alone, I did it for three years while in high school. Extending into college really got me interested in working with children specifically, but children with medical complexity or special health care needs in general. And that work sort of carried over into college, where I continued some like service opportunities and things like that. And I did always kind of think that I wanted to be a doctor, to be honest with you. I don't know exactly where that motivation or enthusiasm came from for that profession, but I did gravitate at University of Rochester, where I did undergrad to some general pediatricians that were there thinking that maybe this is something I want to do with my life. And interesting enough, I ended up in between years of undergraduate and medical school and public health school, I ended up doing Teach for America and ended up being a seventh and eighth grade science teacher. So, this theme sort of developed over time. And if you look at my CV from line to line, I think it's very confusing to somebody, until I actually have an opportunity to explain how I went on this circuitous path.
But, after Teach for America, I got my master's in public health and maternal and child health. And one of the reasons why I skipped from teaching to maternal and child health and master's of public health is because when I was teaching, I was also going to grad school, and I think I was working like 70 hours a week, which made residency a lot more comfortable.
It's extraordinarily hard work to be a new teacher in a district. I was located in Los Angeles, California, very far away from outside Rochester, New York, in the rural hometown I grew up in. And so that built some character, for sure. And also reaffirmed to my need and wants to, work with kids and try to improve their health and well-being sort of overall. And that this sort of what translated everything that I'm doing today in med school, I did a research fellowship between first and second year, focused on children and youth, the special health care needs. And that's when the academic took off. And it was just a wonderful pediatrician at Mass General Hospital, who is still my mentor to this day, 15 years later, and they set me up at Children's Hospital Pittsburgh for a residency, where I also continue doing research with children with the special care needs to that over to Children's Hospital Philadelphia.
And the way I landed in emergency medicine is, it's really interesting. I really like working with my hands, and I like to sort of be a jack of all trades, and I liked being the first person talking to families at the point of care, like when they're in crisis. I took pride in the fact that I could comfort them, hopefully address what they came in for as best of my ability, and then have them, have somebody else carry their care forward, whether that be in the community or in the hospital. So, I just fit sort of clinically. It's the dynamic nature of it and what I wanted to do. And then meanwhile pursued research pursuits to improve the care of kids with medical complexity. I saw that as a gap, that needed to be filled, in their emergency and acute care. And everyone seemed to need some help for it. And that extended from the families to the providers to everyone involved. It was a real challenge. So, I thought, why not? It's a complex problem. Do doing complex problems for a bit of time, and let's jump right into it and try to try to do my best to help these kids and families improve their care.
Dr. Craig Joseph: You came to my attention because I read an article that you were the lead author on. And when you were trying to create an improved version of the emergency information form, and we'll get to that in a few minutes. But before that, I wanted to talk a little bit about how you got to some of the research ideas that you have. And again, one of them that I was very much interested in is human centered design. So certainly that's a key part of most of the people that we talked to on this podcast. And you had mentioned that you started to take an implementation science course, and the first question is, of course, what does that even mean? Implementation science. Everyone knows that to implement something, you just tell people about it and then you turn it on. Tell me, first of all, what is implementation science? I think we do know a little bit about it, but I would love to hear more about, you know, why you thought it was important and then what was that moment? What are you like, “Wait a second, there's something in implementation science that I really want to focus on, which is design”?
Dr. Christian Pulcini: I will say how I got into it was I wrote a career development award for the NIH, and I felt like from what little I knew about implementation science, that it would be the answer to all the issues surrounding the emergency information form, which you're going to ask me about. And I signed up for these courses through that training plan at UCSF, and I saw a course that was one of the electives, and it was human centered design. And I thought it was so interesting. And I was reading through the description, and it talked about iterative prototyping, building empathy for end users. And it made me think, this is exactly what I need to do. This is actually the thing that will solve the issues that I was foreseeing or what I needed to learn about more to go about doing it as a pediatric emergency medicine doctor. Certainly the empathy building and building it towards an end user just resonated with me really well. Backing up the implementation science when we're talking about that as you probably know. And thanks for throwing me the softball of the implementation science question is that there is a known gap between known evidence and when it has actually implemented in practice, and that gap is large years and years and years before real solid evidence.
So, we could say that somebody did a randomized control trial for some sort of therapy that was shown to be extraordinarily effective in improving patient care. It was published in the New England Journal of Medicine in 2002. There's a solid chance that intervention is still not implemented widely today, and that's how many years it takes from this sort of evidence to implementation. Gap in implementation science is all about taking evidence base or the thing, as they often call it, and getting it into practice as soon as possible so it can positively affect patients. So, I answered your question sort of backwards, by telling you about the human centered design first. But implementation science and human centered design, I found through that certificate program, are married together in some respects. There's certainly some overlap there that are complementary in nature. And that is when we're talking about closing that implementation gap for that evidence based intervention, we want to ensure that we are considering all of the end users, or humans that are going to be interacting with that intervention and sort of making it happen to improve patient care.
Dr. Craig Joseph: So you're certainly talking about in the health care gaps of decades between when we know better and when we actually get that out, to the, the practicing, you know, clinicians who quite frankly, and I count myself one, you know, well, that's not how I was trained. That's right. That's not exactly how you were trained because we didn't know we thought that that was the best way.
And it turns out that’s not necessarily the best way. When I was training as a pediatric resident, we were there were still kind of conversations about which way a baby should sleep on, on their back or on their tummy. We now know the answer to that. But that was kind of controversial back then. And now it's kind of like a no brainer. So, it did take a lot of time, not only to convince doctors that, back is best, but also to help them convince parents as well. And I think that's all part of that implementation science approach.
Dr. Christian Pulcini: Yes. And I mean, changing human behavior and culture and training and all of these things that are ingrained in us is certainly probably the most difficult feat when you're going to implement an intervention, if not the actual intervention itself, which can sometimes be set up in this sort of quasi experimental design that is not realistic for centers across the United States, but to actually dig in into the local context and understand the folks who are going to be doing the intervention is, it's just so, so important. And I'm grateful that somebody realized this in the last 20 years, even to come up with this field of implementation science and that human centered design is starting to enter more regularly into the health care space.
Dr. Craig Joseph: 100%. Oftentimes it's, you know, if you make it easy to do the right thing, the right thing being the new way of approaching new study, new test, new intervention, it just kind of happens. Let's talk a little bit about human centered design as you use it. You said that you found it more nimble and more efficient than other things in academia. How did you find that? So were there any examples of where you were like, oh, well if we just do if we just apply some of these principles of design, if we acknowledge how humans work, it's often easier then than having to do a lot more, you know, a lot of other work in a different area.
Dr. Christian Pulcini: I think the easiest example was perhaps early on in my work and in that class that I was taking, we were talking about pediatric and provider burnout, and we agreed to go address that or try to come up with some sort of solution to that issue. In our local context, in the first assignment, we had was to contact a local pediatrician and go and observe them in their office from front to back. So, to better understand and be able to empathize with what they were actually going through. And here, what I traditionally did in sort of mixed methods research, just for example, is I would recruit 13 to 20 folks to do semi-structured interviews. We do hour long interviews when I kind of knew what, I assumed I knew what the problem was already. And then I already designed my interview guide. And then we took these long transcripts. We analyzed them. It took a year or two to dig again, put it all together, get the study out of all sorts of funding in which to pay people to do these things and make it non-biased. In the end, I realized that with some of these human centered design principles, they could be enacted in an efficient way to solve problems that were taking a really long time to address and get at a reasonable solution through this sort of extended mixed methods research model.
And I'm not saying that there's something wrong with the mixed methods research model. It certainly has its time and place, but I find that human centered design as an alternative, or at least as a methodology or approach that could augment or stand alone to solve some of these issues across health care could be just as impactful, but much more efficient than that. Obviously, it's going to be much more efficient than a randomized control trial or something. But that, again, is asking different questions. It's doing different things. And I think where a gap is in the knowledge of current health care providers especially, but also individuals in health care, that I'm happy. Things like your podcast and book are trying to prepare people a little better for is that human centered design should be considered as an approach that is accessible and also nimble fitting to the environment of health care, which is complex. It's ever changing, and if you've worked in one health care setting, you've worked in one health care setting. Like it is really challenging to understand what people look like on the ground. Unless you go down there and have some sort of empathetic understanding, like observing them on clinic day. I've never done something like that. I've worked in a pediatric clinic.
I wasn't, I was in residency. I had a clinic every Friday. But seeing it through the eyes of observer and watching you certainly pick out more details and develop a much better understanding of what they're facing, and what could lead to burnout, to then come up with a shared solution that they would then weigh in on.
Dr. Craig Joseph: It's hard to overemphasize, you know, what you just said, the idea that, even if you live it and you're in it every day, you still become numb to so many details. An observer who's from the outside, who often knows not a lot about exactly what's going on but can ask these questions that might seem naive. But then when you kind of break down, you're like, actually, that's a really good question. We've always done it this way. Let's talk about what I've been teasing for a little bit now, this, your emergency care action plan. So why don't you set the stage? I remember it was ten, 15 years ago. The American Academy of Pediatrics put a lot of effort into creating something called the emergency information form. I think it was the AARP.
Dr. Christian Pulcini: It was. Yeah. Been collaborate in collaboration with the American College of Emergency Physicians. It was actually built organizations.
Dr. Craig Joseph: You're absolutely right. So, ACP and AARP put together the brilliant minds and came up with this emergency information form. What was the purpose? What problem were they trying to solve?
Dr. Christian Pulcini: It's been recognized for a long time that there are issues that face that families and children face with, especially with children, with youth and special health care needs, when they need emergent or acute care. What that is, children need a special health care needs, as you're well aware, is a broad range of heterogeneous individuals that have different needs. I focus more on kids with medical complexity, which when we talk about children, youth, the special health care needs, that's probably about 20% of the pediatric population, maybe even up to 25 to 30% of kids in the country. And that could be things like isolated ADHD or autism spectrum disorder or asthma is another good example. Or diabetes type one would be a child with special health care need. A kid with medical complexity is the biggest utilization of health care services. Because they have multi-organ system disease, they're often technology dependent using g-tube and tracheostomy. And I apologize if I'm getting too technical, but the experts realize that all of this, this entire spectrum of kids, that their acute and emergent care was really difficult to do well, in any type of setting, but especially in the emergency department.
And so, they came up with these emergency information forms that could extend across emergency settings. So not only in the emergency room, but also like pre emergency, if a medic came to the house, they could hand them this form and it could be used broadly to deliver higher quality care with a 1 to 2 page summary of what is most important to know about this child. Because sometimes they have a long medical history. It's hard to summarize. We used to say sometimes in the emergency department that there was a binder sign, and the binder sign was that the family brought a binder of all of their medical records from the time that they were born. And it was, you know, this big and I'm here in an emergency trying to do things as quickly and as efficiently as possible. So, the intent of the one page of this EAF was to mitigate that, that you're not sorting through, you're able to act upon the most recent and best information possible to provide the highest quality health care.
Dr. Craig Joseph: We never called it a binder sign, but, boy, you did know it when you had a complex kid and the parents wanted to be able to answer all of your questions. Sometimes your questions would be very complicated. So, they brought all of the information. It was everything. And it's not just we're both pediatricians, so we can attest to it for children. But Neil Patterson, who was one of the co-founders of Cerner, when his wife got sick with cancer, he would fly her around the country to specialists and would have suitcases of paper so that he could have the answers to any question that you wanted.
To your point, this was not, you know, in his example is not an emergency. This is a planned visit. But for you, they're coming to the emergency department. They have something. That's if they need help, then their child's sick. And yeah, trying to get all of that summarized very quickly is difficult. And so, they created that form. And I know I was involved in trying to get those forms to be kind of consumed or taken into the electronic health record and then made available to people, almost as if just a PDF, I think. How did it work? How did it, how did it go? Was it helpful? I'm assuming not because you just spent some time trying to improve it.
Dr. Christian Pulcini: Well, I think there's several problems. I mean, if you even look, if you just look at the if not filled out, just laying there in front of you from a human centered design perspective, it's not pretty. It looks like a form. It is extraordinarily condensed. The font is tiny, and it looks like they just try to fit in as much information as humanly possible on this one page, to say it was one page, it's really difficult to sort through and read. It has some extraneous information that is not really important to emergency medicine providers and frankly, probably not even important to families in the setting of an emergency, or anyone for that matter, medics, whoever it may be, who is presented with this form.
And so, when I looked at it, I thought, well, the appearance for one needs to improve so human beings actually want to interact and look at it. The content needs to be reviewed to only have the essential content, because if, you know, emergency medicine providers such as myself, we're probably not going to read very much past some information that is not immediately actionable or suitable. And in that moment and then that form will get thrown aside, and then we'll go about doing things in a different way. So, the format, the content, and also where it is actually situated. So there have been many, many people who've tried to do apps that exist outside the electronic health record. And those have not gone so well in terms of acceptability and feasibility. There's always concern about privacy of information where this app comes from. I'm not familiar with that. It is not embedded in what EHR that they have, with the most common being Epic. It is not in there, which is what we use most often to deliver and sort of execute and organize health care. And so I thought, I think we can revisit these with the people that interact with these forms and look at this and take these human centered design principles that I was learning about through the class, and have end users take a look at it with those things in mind.
So how can it? What would you recommend I make this appearance? What appearance would you want? What content would you want? What format would you want? And I will tell you, the most fascinating thing about all this is how I landed on the name of Emergency Care Action Plan. It was a p. I invited pediatricians, I invited families, I invited rural emergency medicine, general emergency medicine physicians who were going to interact with this form, especially in my state of Vermont. And we had a large group. We used some software where people can put some sticky notes up there, all virtual. And a pediatric pulmonologist said, you know what? You didn't ask this, but the emergency information form just doesn't make me want to read it. I don't want any more forms in my day. He's like, I want an action plan. And he's like, that's how we landed on asthma action plans. And they've been so widely accepted because it's an action plan and it has the green light, the yellow light, the red light on it. It's easily digestible. Why don't you try to make it like that? And I was like, why don't we call this an emergency care action plan instead?
So, it is more suggestive of what it's actually doing. We're giving somebody an action plan to do in the setting of emergency, and he has no proprietary rights of the emergency care action plan. None of us do, as it's open access and funded by the NIH. It's now free for everyone. But it was really interesting to interact. And that I guess that is the epitome of human centered design, when we're talking about it, is when you start asking the people who are actually going to use it or interact with it, that there may be things that come up that you would have never foresaw, that, help solve a problem. And even if it's just framing or the title of something that was a really rich story that I often like to tell, that justifies the approach that we ended up taking to make this emergency Care Action Plan, which is now condensed. It's spaced out. It has only the essential information. And I had the pleasure of hearing quite the rigorous debates among all of these folks on what should be included and whatnot. And that is also extraordinarily entertaining. And I have to say.
Dr. Craig Joseph: I'm fascinated by that. Like, it sounds like even if you didn't make very many changes to the product that you started with, just changing the name will get you a lot of buy in. Because especially in emergency medicine, emergency medicine physicians, you know, you are just looking at shiny things because you got to make a decision with very little information at no time. And then you need to move on to the next decision that you have to make and something that is in, you know, so you're constantly taking action whether you want to or not. Oftentimes you don't want to, but you have no choice. And that calling this and thinking about the success of an asthma action plan, which is it seems like it's always been around. I know it hasn't, but it seems like it's always been around.
Dr. Craig Joseph: Brilliant. Let's talk about how did you do so. So, you've already given props to human centered design to help with the title, with the name of this thing. After reading your paper, one of the first things you talk about is the is the double diamond method. And so can you describe the, the phases of that and how kind of it played out as you were going. You kind of teased us a little bit but give us a little bit more details.
Dr. Christian Pulcini: Absolutely. So, for four phases that we work through. And I think I've actually described all the phases to you when talking about the ICAP and even before then, the discover phase is all about gaining a deeper understanding of the issue rather than assuming a solution. So, when I was talking about the observation in the primary care clinic, that was a great parallel to like what a discover phase would be, because I assumed I knew why there were burnout. Too many patients, too little time, all these things, and it. Yeah, it doesn't. It had nothing to do with that. This, the pediatrician that I observed was so lovely and happy, went in the room with patients and liked seeing some mix of acute patients and well-child checks and seemed to thrive when he was doing that. It was all the tasks in between that were not sort of centralized or probably what you describe.
We've been doing, like doing it like this forever. So that's just how we do it. We have to fill out this paper form instead of, like, doing this and all these extraneous things that we're taking away from what he actually brought him. Joy was what I observed when I saw. So, I just assumed it was all pressure to see more patients and generate more revenue. But that's was not really what I observed when I was there. And so, I gained a deeper understanding of the issue rather than took my assumed solution or bias entering into that situation or observation assignment as it was. And that's what the discover phase is all about. How I did that. I did plenty of mixed methods. I did a little more formal approach. I interviewed folks, I did a bunch of surveys of large groups of people. And then frankly, I just talked to a lot of people in the emergency room and asked them about their perspective on this leading up to for years prior to actually doing it. I would ask people, do you think this is helpful? What would be problems with this?
What would not be the problems with it? I wasn't able to observe it from front to finish because, front. Yeah, front to finish because as you noted, yeah, we're not implemented very well. So, there's not very many people who actually have them to observe how it goes from the front because they're not there or they don't, they don't exist. So, it took some background work. I did it in a very academic manner. And that was again before I figured out some of this. But it did give me some great insights leading into the other phases of human centered design. So, that's about defining the challenge. So, what is the actual problem here after you've made those insights? And for me, the actual problem was that the content format and the implementation barriers of differ are the problem, it seemed from what I collected, and that after that I moved on to the develop phase, which tries to develop some solutions to a clearly defined problem that you came up with in the defined phase. What my favorite part of this entire process, and favorite part of writing that paper, was the developed phase, because I got to join together with the end users in these sort of work groups, and we were bouncing ideas back and forth.
And this is where the story came from, about the name of the ICAP. And I just got so much I so many ideas and so much insight. And there was such a collaborative nature when everyone realized, wow, this is actually going to happen. This is a good idea. And my opinion matters in terms of creating this prototype and then doing iterative prototyping. And then we meet next I updated the prototype and then we did it again. We sort of tore it apart. Content format. What does it look like? What changes can I make here? Sometimes there are new people in and out of those conversations, which would result in completely different conversations of what we were having in the previous group. And it was ended up being a really, really rich discussion. And then we got to like 3 or 4 of those groups. And I said, listen, when are we ready to implement this? Like, what? Are we ready to give it a try? And they've universally said, I think you can give it a try now. And I explained to them, and which is also a little bit different than traditional methodologies, where in a randomized controlled trial you have to have exact fidelity to an intervention, meaning you can't change it very much where in this case, if we run into issues, we sort of adapt.
I document them because I'm still doing an academic project. I document when we make changes, we make the changes that work for the people who are using it, and then we move on and continue measuring the impact of the intervention that we're doing. And that's the deliver phase, which I'm on now. It is now the ICAP is now implemented. In our system, we are recruiting infants out of the neonatal intensive care unit because we know that their particular high utilizes within the first year of life. And also, it's a really, really tough time for parents who may not have expected to have a child with the special health care need or medical complexity. And we say, okay, you're discharged from the ICU. Follow up with your pediatrician, and there's not much of a stopgap measure or emergency planning that happens with the multiple specialists that might be involved in their care. And so, what we do is they graduate from the NICU with an ICAP that is in the electronic health record with an FYI flag for the emergency medicine providers, which is in their current workflow there. We already have a workflow for a different population for it. So, it's in their workflow and they understand it and they approve of it. The parents leave with a paper copy because they wanted a paper copy. And then also it's available via MyChart so they can access it, digitally anytime they want. So, there's sort of multiple points of access which solve the issue with the diff, which was typically done on paper.
We are doing it. We're measuring health service outcomes. And at least from a health care leader, this is a high utilization, high-cost population. And the goal is to reduce inpatient days in the hospital. And I will say, as a very empathetic pediatrician, there's nobody who wants to be in the hospital less than the infant who just graduated from the NICU. And then they're back in the hospital again. There's nobody who wants to be there less than them. And so from all, it's sort of all around. We're not like the quadruple aim of things, with this implementing this tool that will hopefully continue to be impactful and acceptable and feasible.
Dr. Craig Joseph: Let me just give an emphatic yes to everything you said. I love that you've kind of started targeting NIU graduates. Like you said, they don't want to be coming back into the hospital for sure. And they are complex. A lot of them are. The vast majority of them are complex and parents haven't had a long time to figure out how the health care system works. By the time that that child turns 5 or 6, it's a different experience with the parents. Oftentimes, I know as a resident, the parents were so much more well versed in their children's care than I was. And that was before the internet, when I was, when I was a resident. It was very humbling when the parents were like, no, that's not how we do things anymore. And things that you learned in medical school two years ago are no longer valid for children like these. And certainly learned a lot from parents. I think it's great that your kind of incorporating this already into the process. That was going to be one of my questions. How do you incorporate this into the tool that most people use to look at patients, which is the electronic health record?
And you specifically mentioned, one feature or piece of functionality in the epic, how are you making suggestions for folks? What kind of suggestions can you give even to other people who might be using epic, but in a completely different way, or be, or are using a different electronic health record? Or are there any suggestions about going kind of full circle back to implementation of this new cap?
Dr. Christian Pulcini: I will say anything that you can do to make it easier for human beings to interact with each other. And so, I took the low hanging fruit, which I feel like is very important when you're talking about human centered, a user centered design, making it easy for people to do the right thing. It's something that you need to reinforce. And when I found out that we already had this existing workflow, it circumvented me trying to do something else that was more complicated. I said, "Well, why don't we just do that?" We don't. There's no need for me to be innovative here. They're already using it. They have already self-identified that. They enjoy using it in this way, that it's not a BPA that pops up at them like so many others, that they have to then click off, okay. They stated confidently, "I recognize the flag over there." I know it's there. I will use it, and I will certainly use it for this population, which, by the way, when I say parents don't want to be in the hospital, and from an emergency medicine perspective, these little infants for the medical complexity are very nerve racking.
When they come in, especially at 2 or 3 in the morning. And so that also helps motivate them to look over at the FBI flag, like, please, some of them, I beg, can you make more of these plans that we can use for kids? But, to actually answer your question in a very broad manner is to look at the existing workflows that are working in your setting, and then just build something within those. And if there is not one which I was fortunate to have one, then you need to ask people what they would most prefer, before implementing needed or they're not going to use it. This sounds so intuitive, which is one reason why I really like human centered design is because sometimes when we're talking about a comparison with implementation science or Kiwi, when we start talking about implementation science theories and frameworks, people's eyes gloss over and they start to get lost amongst that. And then she if you don't have robust systems to track data and do run charts and all these other things there, there is an option, and the option is human centered design because you have to talk to the people who are using it. That is your data. And there's always people using something. And if that's what you're trying to do, that's what you're trying to improve. Build it, build it within, make their lives easier.
And this is kind of how I sell it to everybody that I talk to when I talk about human centered design is I'm trying to make your life easier. That's what the goal of this is. And usually get a smile or like a, like even a snarky like, are you really trying to do that? Like, is this real? Or is this just one more thing I have to do? And I'm like, no, I promise you. This is meant to make your life easier and make the lives of our patients and families better. And what the goal is. And you are going to help me get there. It might not always be easy, but you have to help me get there because that's part of this is you as an end user. So again, back to your original question. Just make it easy for them. Build within existing workflows. Especially when you're talking about EHR operability. It's a really challenging thing that I haven't quite solved yet, and I'm not sure anybody has, but I think we're working towards that. Better systems and better operating across institutions.
Dr. Craig Joseph: Yeah, definitely great advice. As long as it's as long as it's easier than the current, you know, sometimes it's not adding anything. Right. It's taking something away. I remember as a resident discharging kids with cancer who were in for chemo at two in the morning. I remember getting vividly, remember getting calls often parents want to go home and it's two in the morning and their chemo was done. And by God, we're going to send them home. And that's not something you see in other parts of the hospital very, very typically. Well, what's next? Are you moving on to bigger and better things or are we kind of trying to implement this, this new action plan and see how it can actually impact outcomes?
Dr. Christian Pulcini: For the action plan itself, the sample size I have proposed and in my setting is only 50 patients, 25 getting the ICAP and 25, having standard care. So, I won't have the sample size or power to detect effective outcomes. So, like inpatient days is, is the primary outcome Ed visits avoided is also an outcome. And we're trying to figure out how to measure accurately. But it is a little difficult because that's human decision making that is not in the health care setting. Transfers into facility transfers.
Could a general emergency department not transfer it to our children's hospital, or where there's pediatric expertise because they have an emergency care action plan? All of these things, in addition to speaking to the end users, is this acceptable? Is this feasible? Importantly, is this sustainable? And that's a question that certainly remains to be answered. But the next step is testing it in a bigger setting.
What we're going to do is a multicenter, randomized control trial of this intervention to see if it does definitively reduce inpatient days. I talked a little bit about inflation implementation science, and one of the things that implementation science goes through is a subway of translational research. And it says, you know, has this proved efficacious? And actually, the EAF emergency care planning tools in general have proven to be efficacious in simulated settings, but never in real world settings. So, there's no there's nothing that suggests that this plan is effective in real world settings at all. Right now, there's no evidence I can say pretty confidently. Usually, people have to put a disclaimer to my knowledge. I promise there's nothing to suggest that this is effective in real world settings. And I think that's the biggest question to answer, because if it is truly effective and we should be designing it, we should continue designing it for the local context. We shouldn’t continue trying to implement it if it is not effective.
And that is entirely possible at this juncture. I recognize that as somebody studying this, it wouldn't make much sense if it wasn't, but if it's not effective, then we're going to try to think of other interventions to help kids and youth, especially health care needs, medical complexity in terms of their emergency care. Maybe the ICAP is not the right answer. It's pretty good preliminary data, but we'll see how it rolls out in bigger settings, which will probably be a little bit better resource. Large children's hospitals and such.
Dr. Craig Joseph: I'm excited for you. We'll have to have you back. Maybe we'll do it after you win the Nobel Prize. Yeah, yeah. Awesome. This has been great. I've really learned a lot. And I think this application of human centered design specifically to a real-world problem that's obvious to everyone in the emergency department, that taking care of medically complicated children is super helpful. And again, I agree with you. It makes no sense that this wouldn't be a game changer and make things better. But the data will set us free and tell us that before I let you go, we always like to end with one question about design. And that's, if there's something that's so well designed in your life that it brings you joy whenever you interact with it, is there something or are there 1 or 2 things like that?
Dr. Christian Pulcini: I think one of the things that I recently picked up is sort of turning my academic research wheels as well as the ring that you can see here. And because I have no proprietary relationship to any ring, this is a trackable or wearable sort of, I would say, medical device of some sort. It's how you describe it. But I've acquired this recently through some collaborations with somebody doing research with it, and I find it extraordinarily easy to use and encouraging me to do the right thing. So, when we talk about human centered design, encouraging folks to do the right thing, this will hit me up at about 9 to 10 and say, this is your optimal bedtime, according to data from the last two months.
And it will tell me that, and not in an annoying way. It will say, you know, hey, don't worry about it. It gives me a score each day for my readiness for each day. And it gives me all of this other data about sleep, about activity rate, the touch of a finger tips, and it's a really nice looking and accessible app that they have that's really easy to use, and it already has encouraged some of my habits. I mean, it's about a month and I've already made some different habits based on what this is telling me. So, I love technology that helps people improve their health by just doing the right thing, by focusing on sleep and wellness. Because if devices like this or interventions like this could get me out of a job, and I never saw an injured or ill kid ever again in the emergency department, I'm more than happy to pivot and go to a different career. I think things like this that are innovative, that really promote wellness across populations, they get me really excited to see that people being innovative and focusing on this and that people are actually buying and interacting with it in a good manner, but well-designed for sure.
Dr. Craig Joseph: That's terrific. Awesome. Doctor Christian Pulcini, thank you so much. You've really educated us today and how to take design from principles and ideas to the real world. And it was great. Look forward to all the great things you're going to do and can't wait to see the things you're going to learn.
Dr. Christian Pulcini: That sounds great. Thank you so much.
READ THE TRANSCRIPT
Show Notes:
[00:00] Intros
[01:16] Teacher to ER Doctor
[05:05] Implementation science and human centered design
[08:28] Design in action
[13:52] Reimagining emergency care
[22:35] The power of a name
[24:57] Designing with end users
[28:13] Delivering the ECAP in real life
[38:29] Christian's favorite well-designed thing
[40:13] Outros
Transcript:
Dr. Craig Joseph: Doctor Christian Pulcini, welcome to the podcast. How are you, sir?
Dr. Christian Pulcini: Doing well. Thank you.
Dr. Craig Joseph: I'm very excited that I pronounced your name correctly. How's your Italian?
Dr. Christian Pulcini: It's okay. It's right there on the okay spectrum. I can tell you what. I can tell you what Pulcini means. If you're curious.
Dr. Craig Joseph: I'm exceedingly curious.
Dr. Christian Pulcini: Pulcini is the plural for little baby chicks. Our family represents many little baby chicks, which is fitting with my three children.
Dr. Craig Joseph: I like that. I like that. All right, but even if you had no kids, you would still have that name, I'm thinking.
Dr. Christian Pulcini: Indeed, indeed. Very true. Yeah.
Dr. Craig Joseph: Let's talk about something more important. Let's talk about your current situation. You're a pediatric emergency medicine physician. How did you, kind of, become one? And with an academic slant as well? Is this something that you've always wanted to do, or you kind of fell into it?
Dr. Christian Pulcini: It's interesting. I am the only physician in my family, and I'm actually a first-generation college student, interestingly enough. And I grew up in a small rural town, so it depends on how far we want to go back here to discuss how I ended up in this. But I think one of the formative experiences was, is that one of the guidance counselors in high school spoke to me about volunteering at a camp for children with muscular dystrophy, and it was one of those sleepover camps that you attended. Volunteer as a camp counselor.
And I will tell you that experience alone, I did it for three years while in high school. Extending into college really got me interested in working with children specifically, but children with medical complexity or special health care needs in general. And that work sort of carried over into college, where I continued some like service opportunities and things like that. And I did always kind of think that I wanted to be a doctor, to be honest with you. I don't know exactly where that motivation or enthusiasm came from for that profession, but I did gravitate at University of Rochester, where I did undergrad to some general pediatricians that were there thinking that maybe this is something I want to do with my life. And interesting enough, I ended up in between years of undergraduate and medical school and public health school, I ended up doing Teach for America and ended up being a seventh and eighth grade science teacher. So, this theme sort of developed over time. And if you look at my CV from line to line, I think it's very confusing to somebody, until I actually have an opportunity to explain how I went on this circuitous path.
But, after Teach for America, I got my master's in public health and maternal and child health. And one of the reasons why I skipped from teaching to maternal and child health and master's of public health is because when I was teaching, I was also going to grad school, and I think I was working like 70 hours a week, which made residency a lot more comfortable.
It's extraordinarily hard work to be a new teacher in a district. I was located in Los Angeles, California, very far away from outside Rochester, New York, in the rural hometown I grew up in. And so that built some character, for sure. And also reaffirmed to my need and wants to, work with kids and try to improve their health and well-being sort of overall. And that this sort of what translated everything that I'm doing today in med school, I did a research fellowship between first and second year, focused on children and youth, the special health care needs. And that's when the academic took off. And it was just a wonderful pediatrician at Mass General Hospital, who is still my mentor to this day, 15 years later, and they set me up at Children's Hospital Pittsburgh for a residency, where I also continue doing research with children with the special care needs to that over to Children's Hospital Philadelphia.
And the way I landed in emergency medicine is, it's really interesting. I really like working with my hands, and I like to sort of be a jack of all trades, and I liked being the first person talking to families at the point of care, like when they're in crisis. I took pride in the fact that I could comfort them, hopefully address what they came in for as best of my ability, and then have them, have somebody else carry their care forward, whether that be in the community or in the hospital. So, I just fit sort of clinically. It's the dynamic nature of it and what I wanted to do. And then meanwhile pursued research pursuits to improve the care of kids with medical complexity. I saw that as a gap, that needed to be filled, in their emergency and acute care. And everyone seemed to need some help for it. And that extended from the families to the providers to everyone involved. It was a real challenge. So, I thought, why not? It's a complex problem. Do doing complex problems for a bit of time, and let's jump right into it and try to try to do my best to help these kids and families improve their care.
Dr. Craig Joseph: You came to my attention because I read an article that you were the lead author on. And when you were trying to create an improved version of the emergency information form, and we'll get to that in a few minutes. But before that, I wanted to talk a little bit about how you got to some of the research ideas that you have. And again, one of them that I was very much interested in is human centered design. So certainly that's a key part of most of the people that we talked to on this podcast. And you had mentioned that you started to take an implementation science course, and the first question is, of course, what does that even mean? Implementation science. Everyone knows that to implement something, you just tell people about it and then you turn it on. Tell me, first of all, what is implementation science? I think we do know a little bit about it, but I would love to hear more about, you know, why you thought it was important and then what was that moment? What are you like, “Wait a second, there's something in implementation science that I really want to focus on, which is design”?
Dr. Christian Pulcini: I will say how I got into it was I wrote a career development award for the NIH, and I felt like from what little I knew about implementation science, that it would be the answer to all the issues surrounding the emergency information form, which you're going to ask me about. And I signed up for these courses through that training plan at UCSF, and I saw a course that was one of the electives, and it was human centered design. And I thought it was so interesting. And I was reading through the description, and it talked about iterative prototyping, building empathy for end users. And it made me think, this is exactly what I need to do. This is actually the thing that will solve the issues that I was foreseeing or what I needed to learn about more to go about doing it as a pediatric emergency medicine doctor. Certainly the empathy building and building it towards an end user just resonated with me really well. Backing up the implementation science when we're talking about that as you probably know. And thanks for throwing me the softball of the implementation science question is that there is a known gap between known evidence and when it has actually implemented in practice, and that gap is large years and years and years before real solid evidence.
So, we could say that somebody did a randomized control trial for some sort of therapy that was shown to be extraordinarily effective in improving patient care. It was published in the New England Journal of Medicine in 2002. There's a solid chance that intervention is still not implemented widely today, and that's how many years it takes from this sort of evidence to implementation. Gap in implementation science is all about taking evidence base or the thing, as they often call it, and getting it into practice as soon as possible so it can positively affect patients. So, I answered your question sort of backwards, by telling you about the human centered design first. But implementation science and human centered design, I found through that certificate program, are married together in some respects. There's certainly some overlap there that are complementary in nature. And that is when we're talking about closing that implementation gap for that evidence based intervention, we want to ensure that we are considering all of the end users, or humans that are going to be interacting with that intervention and sort of making it happen to improve patient care.
Dr. Craig Joseph: So you're certainly talking about in the health care gaps of decades between when we know better and when we actually get that out, to the, the practicing, you know, clinicians who quite frankly, and I count myself one, you know, well, that's not how I was trained. That's right. That's not exactly how you were trained because we didn't know we thought that that was the best way.
And it turns out that’s not necessarily the best way. When I was training as a pediatric resident, we were there were still kind of conversations about which way a baby should sleep on, on their back or on their tummy. We now know the answer to that. But that was kind of controversial back then. And now it's kind of like a no brainer. So, it did take a lot of time, not only to convince doctors that, back is best, but also to help them convince parents as well. And I think that's all part of that implementation science approach.
Dr. Christian Pulcini: Yes. And I mean, changing human behavior and culture and training and all of these things that are ingrained in us is certainly probably the most difficult feat when you're going to implement an intervention, if not the actual intervention itself, which can sometimes be set up in this sort of quasi experimental design that is not realistic for centers across the United States, but to actually dig in into the local context and understand the folks who are going to be doing the intervention is, it's just so, so important. And I'm grateful that somebody realized this in the last 20 years, even to come up with this field of implementation science and that human centered design is starting to enter more regularly into the health care space.
Dr. Craig Joseph: 100%. Oftentimes it's, you know, if you make it easy to do the right thing, the right thing being the new way of approaching new study, new test, new intervention, it just kind of happens. Let's talk a little bit about human centered design as you use it. You said that you found it more nimble and more efficient than other things in academia. How did you find that? So were there any examples of where you were like, oh, well if we just do if we just apply some of these principles of design, if we acknowledge how humans work, it's often easier then than having to do a lot more, you know, a lot of other work in a different area.
Dr. Christian Pulcini: I think the easiest example was perhaps early on in my work and in that class that I was taking, we were talking about pediatric and provider burnout, and we agreed to go address that or try to come up with some sort of solution to that issue. In our local context, in the first assignment, we had was to contact a local pediatrician and go and observe them in their office from front to back. So, to better understand and be able to empathize with what they were actually going through. And here, what I traditionally did in sort of mixed methods research, just for example, is I would recruit 13 to 20 folks to do semi-structured interviews. We do hour long interviews when I kind of knew what, I assumed I knew what the problem was already. And then I already designed my interview guide. And then we took these long transcripts. We analyzed them. It took a year or two to dig again, put it all together, get the study out of all sorts of funding in which to pay people to do these things and make it non-biased. In the end, I realized that with some of these human centered design principles, they could be enacted in an efficient way to solve problems that were taking a really long time to address and get at a reasonable solution through this sort of extended mixed methods research model.
And I'm not saying that there's something wrong with the mixed methods research model. It certainly has its time and place, but I find that human centered design as an alternative, or at least as a methodology or approach that could augment or stand alone to solve some of these issues across health care could be just as impactful, but much more efficient than that. Obviously, it's going to be much more efficient than a randomized control trial or something. But that, again, is asking different questions. It's doing different things. And I think where a gap is in the knowledge of current health care providers especially, but also individuals in health care, that I'm happy. Things like your podcast and book are trying to prepare people a little better for is that human centered design should be considered as an approach that is accessible and also nimble fitting to the environment of health care, which is complex. It's ever changing, and if you've worked in one health care setting, you've worked in one health care setting. Like it is really challenging to understand what people look like on the ground. Unless you go down there and have some sort of empathetic understanding, like observing them on clinic day. I've never done something like that. I've worked in a pediatric clinic.
I wasn't, I was in residency. I had a clinic every Friday. But seeing it through the eyes of observer and watching you certainly pick out more details and develop a much better understanding of what they're facing, and what could lead to burnout, to then come up with a shared solution that they would then weigh in on.
Dr. Craig Joseph: It's hard to overemphasize, you know, what you just said, the idea that, even if you live it and you're in it every day, you still become numb to so many details. An observer who's from the outside, who often knows not a lot about exactly what's going on but can ask these questions that might seem naive. But then when you kind of break down, you're like, actually, that's a really good question. We've always done it this way. Let's talk about what I've been teasing for a little bit now, this, your emergency care action plan. So why don't you set the stage? I remember it was ten, 15 years ago. The American Academy of Pediatrics put a lot of effort into creating something called the emergency information form. I think it was the AARP.
Dr. Christian Pulcini: It was. Yeah. Been collaborate in collaboration with the American College of Emergency Physicians. It was actually built organizations.
Dr. Craig Joseph: You're absolutely right. So, ACP and AARP put together the brilliant minds and came up with this emergency information form. What was the purpose? What problem were they trying to solve?
Dr. Christian Pulcini: It's been recognized for a long time that there are issues that face that families and children face with, especially with children, with youth and special health care needs, when they need emergent or acute care. What that is, children need a special health care needs, as you're well aware, is a broad range of heterogeneous individuals that have different needs. I focus more on kids with medical complexity, which when we talk about children, youth, the special health care needs, that's probably about 20% of the pediatric population, maybe even up to 25 to 30% of kids in the country. And that could be things like isolated ADHD or autism spectrum disorder or asthma is another good example. Or diabetes type one would be a child with special health care need. A kid with medical complexity is the biggest utilization of health care services. Because they have multi-organ system disease, they're often technology dependent using g-tube and tracheostomy. And I apologize if I'm getting too technical, but the experts realize that all of this, this entire spectrum of kids, that their acute and emergent care was really difficult to do well, in any type of setting, but especially in the emergency department.
And so, they came up with these emergency information forms that could extend across emergency settings. So not only in the emergency room, but also like pre emergency, if a medic came to the house, they could hand them this form and it could be used broadly to deliver higher quality care with a 1 to 2 page summary of what is most important to know about this child. Because sometimes they have a long medical history. It's hard to summarize. We used to say sometimes in the emergency department that there was a binder sign, and the binder sign was that the family brought a binder of all of their medical records from the time that they were born. And it was, you know, this big and I'm here in an emergency trying to do things as quickly and as efficiently as possible. So, the intent of the one page of this EAF was to mitigate that, that you're not sorting through, you're able to act upon the most recent and best information possible to provide the highest quality health care.
Dr. Craig Joseph: We never called it a binder sign, but, boy, you did know it when you had a complex kid and the parents wanted to be able to answer all of your questions. Sometimes your questions would be very complicated. So, they brought all of the information. It was everything. And it's not just we're both pediatricians, so we can attest to it for children. But Neil Patterson, who was one of the co-founders of Cerner, when his wife got sick with cancer, he would fly her around the country to specialists and would have suitcases of paper so that he could have the answers to any question that you wanted.
To your point, this was not, you know, in his example is not an emergency. This is a planned visit. But for you, they're coming to the emergency department. They have something. That's if they need help, then their child's sick. And yeah, trying to get all of that summarized very quickly is difficult. And so, they created that form. And I know I was involved in trying to get those forms to be kind of consumed or taken into the electronic health record and then made available to people, almost as if just a PDF, I think. How did it work? How did it, how did it go? Was it helpful? I'm assuming not because you just spent some time trying to improve it.
Dr. Christian Pulcini: Well, I think there's several problems. I mean, if you even look, if you just look at the if not filled out, just laying there in front of you from a human centered design perspective, it's not pretty. It looks like a form. It is extraordinarily condensed. The font is tiny, and it looks like they just try to fit in as much information as humanly possible on this one page, to say it was one page, it's really difficult to sort through and read. It has some extraneous information that is not really important to emergency medicine providers and frankly, probably not even important to families in the setting of an emergency, or anyone for that matter, medics, whoever it may be, who is presented with this form.
And so, when I looked at it, I thought, well, the appearance for one needs to improve so human beings actually want to interact and look at it. The content needs to be reviewed to only have the essential content, because if, you know, emergency medicine providers such as myself, we're probably not going to read very much past some information that is not immediately actionable or suitable. And in that moment and then that form will get thrown aside, and then we'll go about doing things in a different way. So, the format, the content, and also where it is actually situated. So there have been many, many people who've tried to do apps that exist outside the electronic health record. And those have not gone so well in terms of acceptability and feasibility. There's always concern about privacy of information where this app comes from. I'm not familiar with that. It is not embedded in what EHR that they have, with the most common being Epic. It is not in there, which is what we use most often to deliver and sort of execute and organize health care. And so I thought, I think we can revisit these with the people that interact with these forms and look at this and take these human centered design principles that I was learning about through the class, and have end users take a look at it with those things in mind.
So how can it? What would you recommend I make this appearance? What appearance would you want? What content would you want? What format would you want? And I will tell you, the most fascinating thing about all this is how I landed on the name of Emergency Care Action Plan. It was a p. I invited pediatricians, I invited families, I invited rural emergency medicine, general emergency medicine physicians who were going to interact with this form, especially in my state of Vermont. And we had a large group. We used some software where people can put some sticky notes up there, all virtual. And a pediatric pulmonologist said, you know what? You didn't ask this, but the emergency information form just doesn't make me want to read it. I don't want any more forms in my day. He's like, I want an action plan. And he's like, that's how we landed on asthma action plans. And they've been so widely accepted because it's an action plan and it has the green light, the yellow light, the red light on it. It's easily digestible. Why don't you try to make it like that? And I was like, why don't we call this an emergency care action plan instead?
So, it is more suggestive of what it's actually doing. We're giving somebody an action plan to do in the setting of emergency, and he has no proprietary rights of the emergency care action plan. None of us do, as it's open access and funded by the NIH. It's now free for everyone. But it was really interesting to interact. And that I guess that is the epitome of human centered design, when we're talking about it, is when you start asking the people who are actually going to use it or interact with it, that there may be things that come up that you would have never foresaw, that, help solve a problem. And even if it's just framing or the title of something that was a really rich story that I often like to tell, that justifies the approach that we ended up taking to make this emergency Care Action Plan, which is now condensed. It's spaced out. It has only the essential information. And I had the pleasure of hearing quite the rigorous debates among all of these folks on what should be included and whatnot. And that is also extraordinarily entertaining. And I have to say.
Dr. Craig Joseph: I'm fascinated by that. Like, it sounds like even if you didn't make very many changes to the product that you started with, just changing the name will get you a lot of buy in. Because especially in emergency medicine, emergency medicine physicians, you know, you are just looking at shiny things because you got to make a decision with very little information at no time. And then you need to move on to the next decision that you have to make and something that is in, you know, so you're constantly taking action whether you want to or not. Oftentimes you don't want to, but you have no choice. And that calling this and thinking about the success of an asthma action plan, which is it seems like it's always been around. I know it hasn't, but it seems like it's always been around.
Dr. Craig Joseph: Brilliant. Let's talk about how did you do so. So, you've already given props to human centered design to help with the title, with the name of this thing. After reading your paper, one of the first things you talk about is the is the double diamond method. And so can you describe the, the phases of that and how kind of it played out as you were going. You kind of teased us a little bit but give us a little bit more details.
Dr. Christian Pulcini: Absolutely. So, for four phases that we work through. And I think I've actually described all the phases to you when talking about the ECAP and even before then, the discover phase is all about gaining a deeper understanding of the issue rather than assuming a solution. So, when I was talking about the observation in the primary care clinic, that was a great parallel to like what a discover phase would be, because I assumed I knew why there were burnout. Too many patients, too little time, all these things, and it. Yeah, it doesn't. It had nothing to do with that. This, the pediatrician that I observed was so lovely and happy, went in the room with patients and liked seeing some mix of acute patients and well-child checks and seemed to thrive when he was doing that. It was all the tasks in between that were not sort of centralized or probably what you describe.
We've been doing, like doing it like this forever. So that's just how we do it. We have to fill out this paper form instead of, like, doing this and all these extraneous things that we're taking away from what he actually brought him. Joy was what I observed when I saw. So, I just assumed it was all pressure to see more patients and generate more revenue. But that's was not really what I observed when I was there. And so, I gained a deeper understanding of the issue rather than took my assumed solution or bias entering into that situation or observation assignment as it was. And that's what the discover phase is all about. How I did that. I did plenty of mixed methods. I did a little more formal approach. I interviewed folks, I did a bunch of surveys of large groups of people. And then frankly, I just talked to a lot of people in the emergency room and asked them about their perspective on this leading up to for years prior to actually doing it. I would ask people, do you think this is helpful? What would be problems with this?
What would not be the problems with it? I wasn't able to observe it from front to finish because, front. Yeah, front to finish because as you noted, yeah, we're not implemented very well. So, there's not very many people who actually have them to observe how it goes from the front because they're not there or they don't, they don't exist. So, it took some background work. I did it in a very academic manner. And that was again before I figured out some of this. But it did give me some great insights leading into the other phases of human centered design. So, that's about defining the challenge. So, what is the actual problem here after you've made those insights? And for me, the actual problem was that the content format and the implementation barriers of differ are the problem, it seemed from what I collected, and that after that I moved on to the develop phase, which tries to develop some solutions to a clearly defined problem that you came up with in the defined phase. What my favorite part of this entire process, and favorite part of writing that paper, was the developed phase, because I got to join together with the end users in these sort of work groups, and we were bouncing ideas back and forth.
And this is where the story came from, about the name of the ECAP. And I just got so much I so many ideas and so much insight. And there was such a collaborative nature when everyone realized, wow, this is actually going to happen. This is a good idea. And my opinion matters in terms of creating this prototype and then doing iterative prototyping. And then we meet next I updated the prototype and then we did it again. We sort of tore it apart. Content format. What does it look like? What changes can I make here? Sometimes there are new people in and out of those conversations, which would result in completely different conversations of what we were having in the previous group. And it was ended up being a really, really rich discussion. And then we got to like 3 or 4 of those groups. And I said, listen, when are we ready to implement this? Like, what? Are we ready to give it a try? And they've universally said, I think you can give it a try now. And I explained to them, and which is also a little bit different than traditional methodologies, where in a randomized controlled trial you have to have exact fidelity to an intervention, meaning you can't change it very much where in this case, if we run into issues, we sort of adapt.
I document them because I'm still doing an academic project. I document when we make changes, we make the changes that work for the people who are using it, and then we move on and continue measuring the impact of the intervention that we're doing. And that's the deliver phase, which I'm on now. It is now the ECAP is now implemented. In our system, we are recruiting infants out of the neonatal intensive care unit because we know that their particular high utilizes within the first year of life. And also, it's a really, really tough time for parents who may not have expected to have a child with the special health care need or medical complexity. And we say, okay, you're discharged from the ICU. Follow up with your pediatrician, and there's not much of a stopgap measure or emergency planning that happens with the multiple specialists that might be involved in their care. And so, what we do is they graduate from the NICU with an ECAP that is in the electronic health record with an FYI flag for the emergency medicine providers, which is in their current workflow there. We already have a workflow for a different population for it. So, it's in their workflow and they understand it and they approve of it. The parents leave with a paper copy because they wanted a paper copy. And then also it's available via MyChart so they can access it, digitally anytime they want. So, there's sort of multiple points of access which solve the issue with the diff, which was typically done on paper.
We are doing it. We're measuring health service outcomes. And at least from a health care leader, this is a high utilization, high-cost population. And the goal is to reduce inpatient days in the hospital. And I will say, as a very empathetic pediatrician, there's nobody who wants to be in the hospital less than the infant who just graduated from the NICU. And then they're back in the hospital again. There's nobody who wants to be there less than them. And so from all, it's sort of all around. We're not like the quadruple aim of things, with this implementing this tool that will hopefully continue to be impactful and acceptable and feasible.
Dr. Craig Joseph: Let me just give an emphatic yes to everything you said. I love that you've kind of started targeting NIU graduates. Like you said, they don't want to be coming back into the hospital for sure. And they are complex. A lot of them are. The vast majority of them are complex and parents haven't had a long time to figure out how the health care system works. By the time that that child turns 5 or 6, it's a different experience with the parents. Oftentimes, I know as a resident, the parents were so much more well versed in their children's care than I was. And that was before the internet, when I was, when I was a resident. It was very humbling when the parents were like, no, that's not how we do things anymore. And things that you learned in medical school two years ago are no longer valid for children like these. And certainly learned a lot from parents. I think it's great that your kind of incorporating this already into the process. That was going to be one of my questions. How do you incorporate this into the tool that most people use to look at patients, which is the electronic health record?
And you specifically mentioned, one feature or piece of functionality in the epic, how are you making suggestions for folks? What kind of suggestions can you give even to other people who might be using epic, but in a completely different way, or be, or are using a different electronic health record? Or are there any suggestions about going kind of full circle back to implementation of this new cap?
Dr. Christian Pulcini: I will say anything that you can do to make it easier for human beings to interact with each other. And so, I took the low hanging fruit, which I feel like is very important when you're talking about human centered, a user centered design, making it easy for people to do the right thing. It's something that you need to reinforce. And when I found out that we already had this existing workflow, it circumvented me trying to do something else that was more complicated. I said, "Well, why don't we just do that?" We don't. There's no need for me to be innovative here. They're already using it. They have already self-identified that. They enjoy using it in this way, that it's not a BPA that pops up at them like so many others, that they have to then click off, okay. They stated confidently, "I recognize the flag over there." I know it's there. I will use it, and I will certainly use it for this population, which, by the way, when I say parents don't want to be in the hospital, and from an emergency medicine perspective, these little infants for the medical complexity are very nerve racking.
When they come in, especially at 2 or 3 in the morning. And so that also helps motivate them to look over at the FBI flag, like, please, some of them, I beg, can you make more of these plans that we can use for kids? But, to actually answer your question in a very broad manner is to look at the existing workflows that are working in your setting, and then just build something within those. And if there is not one which I was fortunate to have one, then you need to ask people what they would most prefer, before implementing needed or they're not going to use it. This sounds so intuitive, which is one reason why I really like human centered design is because sometimes when we're talking about a comparison with implementation science or Kiwi, when we start talking about implementation science theories and frameworks, people's eyes gloss over and they start to get lost amongst that. And then she if you don't have robust systems to track data and do run charts and all these other things there, there is an option, and the option is human centered design because you have to talk to the people who are using it. That is your data. And there's always people using something. And if that's what you're trying to do, that's what you're trying to improve. Build it, build it within, make their lives easier.
And this is kind of how I sell it to everybody that I talk to when I talk about human centered design is I'm trying to make your life easier. That's what the goal of this is. And usually get a smile or like a, like even a snarky like, are you really trying to do that? Like, is this real? Or is this just one more thing I have to do? And I'm like, no, I promise you. This is meant to make your life easier and make the lives of our patients and families better. And what the goal is. And you are going to help me get there. It might not always be easy, but you have to help me get there because that's part of this is you as an end user. So again, back to your original question. Just make it easy for them. Build within existing workflows. Especially when you're talking about EHR operability. It's a really challenging thing that I haven't quite solved yet, and I'm not sure anybody has, but I think we're working towards that. Better systems and better operating across institutions.
Dr. Craig Joseph: Yeah, definitely great advice. As long as it's as long as it's easier than the current, you know, sometimes it's not adding anything. Right. It's taking something away. I remember as a resident discharging kids with cancer who were in for chemo at two in the morning. I remember getting vividly, remember getting calls often parents want to go home and it's two in the morning and their chemo was done. And by God, we're going to send them home. And that's not something you see in other parts of the hospital very, very typically. Well, what's next? Are you moving on to bigger and better things or are we kind of trying to implement this, this new action plan and see how it can actually impact outcomes?
Dr. Christian Pulcini: For the action plan itself, the sample size I have proposed and in my setting is only 50 patients, 25 getting the ECAP and 25, having standard care. So, I won't have the sample size or power to detect effective outcomes. So, like inpatient days is, is the primary outcome Ed visits avoided is also an outcome. And we're trying to figure out how to measure accurately. But it is a little difficult because that's human decision making that is not in the health care setting. Transfers into facility transfers.
Could a general emergency department not transfer it to our children's hospital, or where there's pediatric expertise because they have an emergency care action plan? All of these things, in addition to speaking to the end users, is this acceptable? Is this feasible? Importantly, is this sustainable? And that's a question that certainly remains to be answered. But the next step is testing it in a bigger setting.
What we're going to do is a multicenter, randomized control trial of this intervention to see if it does definitively reduce inpatient days. I talked a little bit about inflation implementation science, and one of the things that implementation science goes through is a subway of translational research. And it says, you know, has this proved efficacious? And actually, the EAF emergency care planning tools in general have proven to be efficacious in simulated settings, but never in real world settings. So, there's no there's nothing that suggests that this plan is effective in real world settings at all. Right now, there's no evidence I can say pretty confidently. Usually, people have to put a disclaimer to my knowledge. I promise there's nothing to suggest that this is effective in real world settings. And I think that's the biggest question to answer, because if it is truly effective and we should be designing it, we should continue designing it for the local context. We shouldn’t continue trying to implement it if it is not effective.
And that is entirely possible at this juncture. I recognize that as somebody studying this, it wouldn't make much sense if it wasn't, but if it's not effective, then we're going to try to think of other interventions to help kids and youth, especially health care needs, medical complexity in terms of their emergency care. Maybe the ECAP is not the right answer. It's pretty good preliminary data, but we'll see how it rolls out in bigger settings, which will probably be a little bit better resource. Large children's hospitals and such.
Dr. Craig Joseph: I'm excited for you. We'll have to have you back. Maybe we'll do it after you win the Nobel Prize. Yeah, yeah. Awesome. This has been great. I've really learned a lot. And I think this application of human centered design specifically to a real-world problem that's obvious to everyone in the emergency department, that taking care of medically complicated children is super helpful. And again, I agree with you. It makes no sense that this wouldn't be a game changer and make things better. But the data will set us free and tell us that before I let you go, we always like to end with one question about design. And that's, if there's something that's so well designed in your life that it brings you joy whenever you interact with it, is there something or are there 1 or 2 things like that?
Dr. Christian Pulcini: I think one of the things that I recently picked up is sort of turning my academic research wheels as well as the ring that you can see here. And because I have no proprietary relationship to any ring, this is a trackable or wearable sort of, I would say, medical device of some sort. It's how you describe it. But I've acquired this recently through some collaborations with somebody doing research with it, and I find it extraordinarily easy to use and encouraging me to do the right thing. So, when we talk about human centered design, encouraging folks to do the right thing, this will hit me up at about 9 to 10 and say, this is your optimal bedtime, according to data from the last two months.
And it will tell me that, and not in an annoying way. It will say, you know, hey, don't worry about it. It gives me a score each day for my readiness for each day. And it gives me all of this other data about sleep, about activity rate, the touch of a finger tips, and it's a really nice looking and accessible app that they have that's really easy to use, and it already has encouraged some of my habits. I mean, it's about a month and I've already made some different habits based on what this is telling me. So, I love technology that helps people improve their health by just doing the right thing, by focusing on sleep and wellness. Because if devices like this or interventions like this could get me out of a job, and I never saw an injured or ill kid ever again in the emergency department, I'm more than happy to pivot and go to a different career. I think things like this that are innovative, that really promote wellness across populations, they get me really excited to see that people being innovative and focusing on this and that people are actually buying and interacting with it in a good manner, but well-designed for sure.
Dr. Craig Joseph: That's terrific. Awesome. Doctor Christian Pulcini, thank you so much. You've really educated us today and how to take design from principles and ideas to the real world. And it was great. Look forward to all the great things you're going to do and can't wait to see the things you're going to learn.
Dr. Christian Pulcini: That sounds great. Thank you so much.