The Hidden Danger Outside the Hospital: How Families and Clinicians Reinvented Home Care for Pediatric Oncology Patients

What if some of the biggest gains in patient safety aren’t inside hospitals at all—but at the kitchen table?

In this episode, Dr. Amy Billett and Dr. Chris Wong walk us through the groundbreaking, cross-disciplinary effort at Dana-Farber/Boston Children’s in collaboration with Ariadne Labs that cut ambulatory central-line–associated bloodstream infections (CLABSIs) for pediatric oncology patients by ~50%.

It’s a story of co-design, equity, humility, and design thinking—with families as full collaborators, not passive recipients.

Instead of pushing out top-down fixes, the team built the work with families, home-care nurses, and even a checklist engineer who transformed dense clinical instructions into clear, waterproof (yes, literally waterproof), one-page cognitive aids that could survive kitchens, bathrooms, and real homes. They aligned inpatient teaching with home supplies, created universal clean kits to eliminate equity gaps, rebuilt teach-backs to remove shame, and translated materials into Spanish and Arabic so safety didn’t depend on luck or language.

You’ll also hear how Amy’s three-decade career in pediatric quality and safety shaped the work—and how her mentorship of Chris helped fuel the next generation of system thinkers committed to closing the “know-do gap” in medicine.

At a time when more care is shifting homeward, this episode offers a playbook for making safety real beyond the hospital walls.

What We Cover

• The overlooked problem: Ambulatory CLABSIs after discharge and their impact on hospitalizations, chemotherapy delays, and family burden.
• Why usual fixes failed: Families were doing complex care with inconsistent, hard-to-use instructions not designed for home environments.
• Co-design in action: Families, clinicians, home-care nurses, and a checklist engineer created standardized, waterproof, one-page cognitive aids and aligned teaching with real home supplies.
• Human-factors design: The checklist engineer brought clarity, usability, and visual design clinicians alone couldn’t achieve.
• A new model for teachbacks: Judgment-free, normalized teachbacks led by nurse champions—resulting in >90% caregiver independence.
• Equity at the center: Universal clean kits and multilingual materials ensured safe care didn’t depend on resources or language.
• Leadership & mentorship: How Amy’s decades in pediatric safety and Chris’s drive to close the know-do gap shaped the work.
• Ripple effects: National collaboratives adopting ambulatory CLABSI prevention and emerging focus on home medication safety.

Key Takeaways

• Safety challenges often live beyond the hospital.
• Co-design works—families reveal solutions clinicians cannot see alone.
• Usability matters: Clear language and well-designed tools drive real behavior change.
• Equity requires universal design, not selective support.

Connect with Today’s Guests

Dr. Amy Billett

• Best contact method: https://www.linkedin.com/in/amy-billett-a351501a6/

Dr. Chris Wong

• Best contact method: https://www.linkedin.com/in/chris-i-wong-ciepiel-884880145/
• Profile Link: https://www.uhhospitals.org/doctors/WongCiepiel-Chris-1407171804

Chapters

• 0:00 Opening And Core Premise
• 0:19 Host Introduction And Episode Setup
• 1:37 Meet Dr. Chris Wong And Dr. Amy Billet
• 2:56 Chris’s Path From Puerto Rico To QI
• 10:56 Amy’s Three Careers And Safety Pivot
• 17:53 Turning To Ambulatory CLABSI
• 22:38 Funding And Forming A Co‑Design Team
• 26:25 Families As Co‑Designers, Not Recipients
• 31:05 Building Real‑World Tools And Job Aids
• 36:42 Equity, Language, And Teachback Redesign
• 42:05 Normalizing Clinic Teachbacks
• 46:51 Measurable Results And Impact
• 50:40 Spreading To National Collaboratives
• 54:05 Applying Lessons To Home Med Safety
• 58:15 Vision For Safer Care Beyond Hospitals

Transcript

SPEAKER_02: 0:00

You can actually improve patient care not by improving the care to an individual patient, but by changing the system in which that care was taking place. And that was like a breakthrough for me. The light turns on, like, oh, you can actually change care.

SPEAKER_01: 0:19

Welcome to Leading Quality, the podcast spotlighting the people moving healthcare forward from the front lines to the C Street. I'm your host, Jason Meadows. Most quality stories start in a hospital ward. This one starts at the kitchen table. Dr. Chris Wong and Dr. Amy Billet set out to solve a problem almost no one was looking at. Bloodstream infections that happen after pediatric oncology patients go home. The result was a years-long collaboration between clinicians, families, home care nurses, and even a checklist engineer that cut infections in half and quietly redefined what patient-centered design looks like. Amy's career spans three decades at Dana Farber and Boston Children's, where she went from running chemotherapy safety projects in the wake of the Betsy Lehman tragedy to becoming one of the country's first pediatric quality and safety chiefs. Chris trained under her mentorship, bringing her own perspective from Puerto Rico and her drive to close the no-do gap in medicine. Together, they proved that safety doesn't stop at discharge, and that families can be true co-designers, not just recipients of safer care. I wanted them on leading quality because this story captures everything we talk about on this show pragmatic improvement, humility, design thinking, and the courage to cross traditional boundaries. You'll hear how they built trust with families, rewrote the language of teach backs, designed waterproof job aids that actually survived real kitchens and bathrooms, and created one of the first standardized home care curricula for children with central lines. Why listen to this episode? Because their approach, part science and part empathy, points to healthcare's next frontier. Safety in the places where people actually live their lives. If you've ever wondered how to make co-design real or how mentorship can ripple into system level change, this conversation will stay with you long after it ends. Dr. Wong? Dr. Billet. Welcome to the show.

SPEAKER_00: 2:37

Thank you. Thanks.

SPEAKER_01: 2:38

To start, uh I wonder if if each of you could just kind of introduce yourselves. You know, I've I will have given a description of you and a bit of your work, but I'd like to hear in your own words what your your story is, a bit of your background, both the clinical and the research focus that you have. Maybe Chris, we'll start with you.

SPEAKER_00: 2:55

Sure. Thank you, Jason. And I want to just take a minute just to say thank you to Amy because Amy always gives me incredible opportunities, despite the fact that she's not academically as active anymore and has been an incredible mentor for me for the last 10 years. So thank you, Amy, as always. So, and that is with the context, really, because it this is how I started. So I was born and raised in Puerto Rico. I went to medical school in Puerto Rico. And that is important really because when I was there, I was incredibly frustrated really by not being able to provide high-quality care. It is an incredible place. Many people obviously have been there and know that despite the fact that it is a territory of the United States, unfortunately, it is a resource-limited setting. And in the healthcare sector in particular, it is very hard to deliver high-quality care. And so I left really with the idea that I would improve things. As vaguely as that sounds, I don't know that I knew what that meant. I just knew that I wanted things to be better. And so I thought that by going into a leading institution, because I then was able to go to Boston Children's Hospital to train in pediatrics residency and stay there for a fellowship in pediatric immatology and oncology at Boston Children's and Dina Farber, that by doing that, not only would I gain incredible clinical exposure and training, but also academic exposure and training that would then allow me to go back to Puerto Rico and really improve things. And so that was the initial plan. I thought I would be a clinical trialist. I thought that I was going to go back and build a clinical trials unit and just improve outcomes for pediatric oncology patients that way, but I had no idea what pediatric oncology clinical trials was really. And so I really then started to understand what were some of the strengths and skills that I had. And during that time, I had a mentor who is a leader in global pediatric oncology care and improving outcomes access in international settings, who at the time said, you should meet with Amy Billet, because Amy is, and I quote, and you are as well, both very pragmatic. I didn't really understand what that meant either, but those were his exact words. He said, You should meet, you were both very pragmatic. And once I met Amy, I think that was very clear. So I think the first thing that we both realized, or altogether realized, was that what my mentor meant was that although Amy and I really wanted to move the science forward and increase knowledge for pediatric cancer, I think where we were most interested was really closing the knowledge-doing gap, that no-do gap. And I at the time I didn't know what that meant either, but I thought that she would be a great mentor for me to just help me understand how to do that. The second part was that I had always wanted to be at the bedside, be with patients. That's why I went into pediatric oncology care and I wanted really to continue doing interdisciplinary work. And Amy was the same way. She was always patients first. And so it was an incredible match early on where I realized that if I was going to do quality improvement in patient safety, I could still be at the bedside and improving things very quickly. And so the third thing that I learned was that I knew nothing about quality improvement in patient safety. And I needed a path and I needed a mentor, I needed a project. And everyone probably knows that when you train in a place like Boston Children's and Dana Farber, most people come already knowing what they're going to do for the rest of their lives as a career. And yet I had not chosen what my niche would be, what the area of leadership, and that is really the goal that you would have an area that you would flourish. And so quality improvement in patient safety was new. It was exciting, but no one had done it. I was a fellow that had no one had ever really done quality improvement in patient safety as their area of interest. Most people would go into a basic science lab, maybe some health services research, but really no one had done quality improvement in patient safety. And so then at that point, the opportunity came for me to really be under Amy's mentorship. But at the same time, the Harvard Medical School had a patient safety and quality fellowship that I was able to do during my third year of Pediatric Hematology Oncology Fellow. I also then was a fellow in quality and safety. And that really opened out a lot of opportunities. One, it let me understand the science of quality and safety. It allowed me to have a master's in public health and really the background, but also the exposure to a lot of people, a lot of networking, and I think most importantly, just gave me time. That was 80% of my time was dedicated to learning about quality and safety and then doing projects in quality and safety, which is really a pretty incredible blessing that most people don't have because they don't have 80% of their time dedicated to learning or doing something except when you're in your training. And so after that, there were many other opportunities that have led to where I am today. And so I am currently the medical director of quality and safety at university hospitals for the hematology oncology service line. And that's both adult and pediatrics. I had some leadership opportunities previously at Boston Children's and at Dana Farber, also on the adult and pediatric side, and a lot of it really is from Amy's mentorship.

SPEAKER_01: 8:38

Well, that's a great uh on-ramp to to hearing Amy's uh Amy's version of the backstory. And I I love that you've uh had that background and and sounds like really uh you know paved the way in some sense, perhaps for for other future uh uh pediatric hemonk fellows uh to do quality and safety. Amy, what would you add to that?

SPEAKER_02: 8:58

Well, I will start with two thank yous. One, Jason, thank you for putting together a podcast for people interested in patient safety and quality improvement, because it always feels like it's a little niche and then the world doesn't know a heck of a lot about it. And two, Chris, thank you. You can't know how exciting it was for me to get to meet someone as capable as you who actually thought what I cared about was exciting and wonderful, and you wanted to do it too. So it was just amazing, and you have so taken off with every opportunity you have ever been offered, and you've accomplished so much. So thanks. So my version of the story is that I never imagined I would even become a clinician. I went to medical school because I thought it was a good way to learn how to be a laboratory researcher because you got all this, you know, musical knowledge. And then when I was in medical school, I kind of said, no, I kind of like patient care. I actually kind of liked adult oncology until I did an adult oncology rotation at Dana Farber and was just so devastated at the outcomes. And I said, Well, I had a lot more fun in PEADS, so maybe I'll do a PEEDS residency. And then when I was an intern, everybody had one month on the pediatric hemoglobin board, and I had three. So I was getting pointed in a direction. So going into pediatric hemog was just pointed to me. I did my clinical year, I dutifully went into the lab, realized this is not the place for me, and actually went to my boss and said, I want out of the lab, I want to be a clinician. And in retrospect, my career kind of had three main phases in my 30 plus years at Dana Fork for children. So I was a clinician slash clinical researcher for 10-ish years, and I, you know, developed incredible clinical knowledge, and you know, just because you had to, it was no choice about it, ran clinical trials. And then a number of things happened because life is filled with serendipity. So 1995, Dana Farber had a fatal chemotherapy overdose when Betsy Lane, Boston World Reporter, received a what was it, fourfold overdose of chemo. You know, the good old is it four times each day, or is it once each day, times four? Um and in that leadership vacuuming that happened, I suddenly found myself as the person in charge of the inpatient oncology service at Boston Children's. And in that same general time frame, Boston Children's was first discovering clinical practice guidelines. Every program had to have one. And we spent nine months with, I can't tell you how many people trying to come up with a guideline for fever and neutropenia. And we mapped out every aspect of care, including how often the biosign should be performed while the patient was in the ED. So as a result of being on this clinical practice guideline committee, what I learned was you can actually improve patient care not by improving the care to an individual patient, but by changing the system in which that care was taking place. And that was like a breakthrough for me. The light turns on, like, oh, you could actually change care. So, and I think that was very important to my own career. And then going back to sort of where I was as we had there had been a Dana Farber chemotherapy overdose that was very public. There was another chemotherapy overdose, which I will not provide any details of, other than say the patient recovered beautifully and had no long-term harm. But I suddenly discovered I was running a large project to improve chemotherapy safety for the pediatric oncology program. I didn't know what a project was. I didn't know how to run one, I knew nothing. But eventually, what we figured out that handwritten paper orders by individual fellows that were co-signed by attendings was not an adequate basis for chemotherapy safety. So we designed and built a pediatric chemotherapy order entry system that could be used at two different institutions at the same time. And we did this out of scratch. So that ended up leading to another 10 plus years focused on clinical informatics, which included Boston Children's deciding to implement its first commercial electronic health record, which at the time was CERN, and making an agreement between two separate hospitals that the pediatric program at Dana Barber would use the same electronic health record as children's. But a lot of electronic health record implementation is not, it's all that pragmatic stuff that Chris was talking about. You got to make the system actually do the things you want it to do. And but it was also, there's an incredible amount of patient safety work that is built into that. So after 10 years of, you know, designing and building chemotherapy order entry system, implementing electronic health records, CERN or children's, I, in retrospect, was having an every 10-year itch to change. I was ready for my next phase, and that was coincident, you know, good old serendipity, that Boston Children's is also saying that all programs need to have a leader for quality and safety. And no one, our program was volunteering, and people would say, Hey, Amy, you should go do that. So, you know, my usual self, Michael Volunteer. And that led to really the next 10 years focused on patient safety and quality improvement. Actually, at three different institutions, because you know, the outpatient and clinic for cancer care was at Dana Farber, the radiation ontology was at Brigham and Women's Hospital, and everything else was at Boston Children's and trying to figure out how do you get things to work well across three institutions with remarkably few formal agreements and hardly any shared systems, other than thankfully the electronic health record was quite challenging. So that sort of led to the my the you know my focus at Boston Children's and Data Barber for about 10 years of quality and safety. And during that time point, again, serendipitous moment, I had been on the American Board of Pediatrics PDHEMOC subboard. And they would come tell us how they were going to implement this part four. You had to do quality improvement or whatever they called it. And they would come to us and say, we have a module for nutrition, or we have a module for treating asthma. And I'm like, you know, you're never gonna get a pediatric hemonk doctor interested in treating asthma or nourishing babies. That's just not what we do. And so, of course, they invited me to a meeting to create national quality projects in pediatric hemog. I had to, I found two other hemonch docs who I didn't even know personally, but others had told me about them who thought they would be interested in doing that. And so all of a sudden we found that we had created and were running a national collaborative to eliminate inpatient CLABS in the pediatric hemoglobin. And that, if you want to get something to call an improvement, you know, every doc, every nurse, everyone hates the fact that our patients had, you know, these inpatient you know, we didn't know the difference between a CLABS and a bacteremia. We had thought they were the same thing. We learned a lot. So it was an incredible experience to get this network up and running, and it was very, you know, self-run, seat of the pants learning. I think there was one faculty member who actually had training in hemonic, immunity quality and safety, and he wasn't a hemonic person. The rest of us was all just seat-of-the-pants. How do we make this happen? What are we trying to do? But it was really, really exciting. What I can't even remember now is how we then went from that to outpatient collabsy, except as we started to pay attention, there were more outpatient collabs every year than there were inpatients. We knew there was a big problem. But I realized I'm getting ahead of myself because the bottom line was as I hit my next tenure itch, I realized I had never applied for a job in my adult life. I had applied for a job at a jewelry factory the summer after I graduated from high school, but other than that, I had just went right along. So I decided it was time to apply for a job in my adult life. And I applied for a job and became the chief, the first chief pediatric quality safety officer at the Morris Children's Hospital in Woman, Delaware. Happened to be, oops, I started two weeks before the world shut down with the pandemic, so it was a bit more of a challenging job, but it allowed me to really focus on quality and safety until I realized I'm getting too old for this and I don't want to live in a different state than my husband. So I came home to Massachusetts and had to quit my job as a result. So here I am in the happy phases of retirement.

SPEAKER_01: 17:48

Well, congratulations on the beginning of the happy phase of retirement. That gives a great segue into the work that I think will be the bulk of our discussion today. You mentioned the you know the central line associated bloodstream infections or so-called CLABC that will be familiar to a lot of our listeners. And uh, you know, you've already given some of that background as to how that came to be. I'm curious, Chris, if you can give us a little more background as to how you uh joined this work in uh in CLABSY.

SPEAKER_00: 18:19

Yeah, sure. So again, a lot of the work was really just Amy presenting opportunities, and there was this was sort of falling into my lap. And so I think the first thing that had occurred is that there was a lot of attention of inpatient CLABSI. We all know that there was an incredible risk of morbidity and mortality for our patient population, because despite the fact that maybe some infections would not be classified as a CLABSI, our patients were still being admitted to the hospital, potentially stopping chemotherapy for a period of time and were ill sometimes from these infections. So the classification, yes, it's important, but at the same time, clinically, for us, any bloodstream infection was important. And we realized that some of them were happening on the ambulatory side. And as Amy mentioned, there were far more happening. I think when we looked back one year, there were somewhere between 20 to 30 that were occurring per year in our hospital setting. And of course, we were at Boston Children's Hospital, which is serves a large population of pediatric oncology patients and those with hematological disorders as well. But it that's a very large number for children, right? Like 20 to 30 was incredible. And so we didn't know really what the impact was. Is that there was a lot of work on trying to understand what's the cost associated with inpatient CLABC, what is the morbidity associated with that. And so the first thing that we needed to understand is how big was the problem. And so Amy had come up with this idea of trying to understand first really how much does it impact our patients in a tangible way. And so we were able to look back retrospectively over two years at the infections that had occurred in our hospital setting, in our patient population. And it turned out that there were about 70 of these infections or so. And the charges that were associated with these infections were about$36,000. If you were only admitted to the hospital for just the treatment of the infection, if you were then receiving care for your cancer diagnosis or part of the other care that you were supposed to be receiving in the ambulatory setting was now translated into the inpatient setting, obviously, those charges were even more. And these then hospital admissions were associated with a length of stay of about six days. And they let these children actually, some of them obviously ended up going into the intensive care unit. I think it was about 15% of the patients ended up going into the intensive care unit, and about 50% of those actually needed central venous catheter removal. So it was very tangible that this was a problem, that no one was looking into it. But then how would we convince others that we needed to work on it? And so then we were able to present some of this information to others, to other stakeholders, to really get them invested into doing this because we realized we needed some resources to be able to do this. A lot of the work again was focused on the inpatient CLAB C. A lot of the benchmarking existed only for inpatient CLAB C. So all of that needed to be established. And so Amy and others had done some of the work on this, and she can speak a little bit more about this. But how I became involved when was that again, I had time. I had time to do this. I had 80% of my time as a fellow to do this, and Amy did not. She had many hats that she needed to pay a lot more attention to. And I needed a project, I needed a career, I needed a niche. And this was really the baby that she had been really hatching for a period of time, but then gave me the opportunity to grow it.

SPEAKER_01: 21:59

And she didn't know. It's great. I can hear the organic evolution of that uh of that partnership. Sorry, Amy, go ahead.

SPEAKER_02: 22:06

Well, I was gonna say, and you know, Chris really took it and ran. But you know, again, you know, serendipity has such an amazing impact. So um Atul Gwande had started his Ariadne labs, and they would have weekly speakers that we I would go to and I would listen and like you know, blow your mind, people who think creatively about things, and you learn, you know, you have to think outside the standard path. So there was an incredible opportunity there, and I don't even know how I don't know. I said, well, maybe I should you know ask if I can talk about ambulatory collabsy and see what people come up with as ideas because it seemed to me like it was something we needed to figure out. So I didn't have an official talk, but I got to do the little presentation at their end of the year, you know, big get-together. And I also got some feedback from people, which was helpful. But there was a donor for Ariadne Labs who listened to this and said, Well, I want to help solve this problem. It just spoke to her in some way. As I think it really resonated with her as a mother who remembered her child in the hospital, you know, I don't remember all the details. So we ended up with a donor who wanted to help with this work. And at the same time, Boston Children's was working with the three main payers in the area on a payer provider improvement initiatives, and they were offering funding. And Chris helped us. We broke this a grant proposal basically, and they funded us. So now we had funding sources, we had people we had to report to, you know, they're like being held accountable for what we were doing, which is always a very good thing, as well as each of us being our pragmatic. Well, how do we solve this problem? What do we do? So that's kind of was like how it really kicked off. And Chris, I don't even remember how we came up with the idea that we had to have patients and their families as part of this team, not recipients of our improvements, but making the improvements with us. Do you remember Chris?

SPEAKER_00: 24:18

Yeah, some of it was organic. So there were two patient family advocates that were participants in inpatient CLABSY. And I think, again, this speaks to sort of how Amy thought about the domains of quality of Overse being patient-centered, that as part of these, despite the fact that in these meetings we would discuss the infections, what had gone wrong, they were active participants in all of these conversations during our CLABSY prevention committee, which mostly was inpatient CLABSY. And so then as ambulatory CLABS started to evolve, we started asking really these two family members that had had children with a cancer diagnosis and who had had a central venous catheter, these were not catheters that they were caring for every single day, but still they were there, right? There was the risk of infection, and they knew that they watched other people, especially nurses taking care of the central line. So they understood the risk associated with a central venous catheter. And so when we sort of talked a little bit about the idea of doing ambulatory CLAB C prevention, it really was a joint decision to really focus on the home caregivers and to have them as active participants because we realized that they needed to be key stakeholders. At that point, I was not a mother. I was barely an oncologist. I knew nothing really about pediatric, hematology, oncology care in the home or taking care of the central line. I was not a nurse. And so I think we really needed the front line. And the front line was just not only the nurses, it was the home caregivers. And so we had no idea how to teach non-clinically people to take care of a medical device, do a complex medical task at home, and how best to do it, then really to work with them to design a quality improvement project.

SPEAKER_01: 26:09

Well, and you did something so well there, it sounds like that that we sometimes, we often I think fail to do when we're attempting quality improvement uh efforts in healthcare, which is involving families uh from the start and co-designing with them rather than designing for them from afar and dispensing a solution that we think will work. As I'm hearing this, I also am reminded that when we're launching into quality improvement projects like this, one of the things we do at first, beyond establishing which stakeholders we're going to include, is deciding what is in scope, what's out of scope, and basing that often on what factors we control. This work, I guess, would have involved many factors outside of clinician control, you know, families, uh supplies, home environments. Was that a daunting challenge at first?

SPEAKER_00: 27:01

It was incredibly daunting, especially because, as you very well said, we had no control over all of it. And so the way that many of the things happen at Boston Children's in Dana Farber is so the pediatric patients, when they're in the hospital, they are at Boston Children's, where they're outside of the hospital, they get their ambulatory care at Dana Farber. And then in the home, they may have many, many different home care institutions that would provide care in the home, which was great because we were moving more to administering chemotherapy in the home or doing antibiotics in the home. But these were all external vendors, right? That we had no control over whatsoever. And then, of course, you take now all of these home care givers and the many social determinants of health, of which we had very little control over, some families that are made up of many different people of villages. And how do we actually start identifying who are really the true stakeholders? And so that's exactly why we needed the caregivers to be co-designing this with us because we had no idea what we were doing. We had really no way of approaching this. And so it wasn't just the home caregivers that co-designed this with us. We had, for example, a home nurse that was part of these home agencies that provided care. They also were part of the co-design as well. We had ambulatory nurse champions that would help us co-design this as well. We had infection preventionists that would help us think through this. It was such an interdisciplinary work that needed to occur because Amy having her expertise, me just learning this expertise. Obviously, we were trying to lead the charge, but needed the perspective from so many more people.

SPEAKER_02: 28:45

And I would add to that, there were a couple other key members of the team, which is we thought when you were focused on ambularic calamity prevention, it was really an outpatient effort. It turns out, oh, inpatient is critical because who was doing the teaching about Lyme care prior to discharge are the home care nurses. I mean the hospital nurses. Turns out we also learned that there was no standard teaching curriculum. Everybody did it their own way. I mean, it's the usual complete lack of standardization. But there is no way to work on angulatory collabsy prevention without full engagement of inpatient. Um, we also had to make sure the physicians were infinitely more aware of and involved in making it do it. But the other person who we had was, you know, everybody knows about Updulande and the checklists. Well, we had his quote checklist engineer. And the great thing about his checklist engineer is he's not an insider of healthcare. He just reads the words and says, Does this make any sense? How do you make it clear? Which is when you start to realize that there is the dressing, there's the bandage, there's I mean, there are five. Five different words for all of the same things. And also things like, well, in the hospital, they teach you by saying, pick up the blue cap with the red whatever. Well, the home care kit doesn't look anything like the hospital kit. So having someone outside us who helped us understand how to create consistent, simple, easy to understand language. And then I remember as we got input from patients, we don't want real videos, we want cartoons. But if you show us a picture of a real person, we start to think about the person, not what we're learning. You know, there are all these incredible things that we learn because the broader the team was, the more you learn. And then I remember the home care nurses had seen some previous teaching videos we'd made, and they said, You think it looks like that in a patient's home? You know, patient homes aren't filled with beautiful, clean, white, sterile drawers that are cleaned daily by someone and stuck daily by someone. You just kind of learn. Like reality has nothing to do with what you think.

SPEAKER_01: 31:07

That's that's so true. And the the fact that the hospital and the home are so deeply connected is not at all surprising. And yet I can imagine how surprising it might be within the context of the project that you suddenly have this light bulb moment that this is uh, you know, everything we're doing in the hospital, you know, isn't standardized and could benefit from. Chris, I'm hoping you can tell me more about how you created the teaching materials for the curriculum.

SPEAKER_02: 31:34

Well, Chris, I'm gonna let you talk about how we created the teaching materials for the curriculum.

SPEAKER_00: 31:40

Yeah, sure. So we um we, as Amy mentioned, we worked with this checklist engineer, and all of these prototypes started with me drawing something. And again, you know, hematologists, oncologists trying to design care in the home. And so we were very cognizant to have the patients always have a voice. And so we would bring it to the patients, have them look at it, and there would be, yeah, look, it looks fine, we can use it. But there were examples of things that I would have never known, again, because I wasn't caring for a patient in the home, one of which was the fact that things were not waterproof. And so you're expected to wash your hands and then dry your hands and then move this cognitive aid or this tool that you're utilizing to follow the steps to provide central line care in the home in a standardized way. But then every time you use it, it's going to get wet and it's going to get completely destroyed and things that we would never even think about. Very similarly, the fact that you needed to, for example, turn the page when you were supposed to be sterile. How are you supposed to do that? As opposed to having all the diagrams in one page where you could easily access it and it would be more visual rather than reading all of these words. And so the checklist engineer helped us to design several tools. One of the tools, which we called the quick aid, really was in one page, you could see every single step that you needed to do for each one of the tasks. And so, as an example, we wanted to standardize how families in the home were flushing the central line, which is the most common thing that patients would have to do on a daily basis. Every single day, the patients in the families that had an external central venous catheter needed to maintain this line by flushing the central line. And of course, that presented an opportunity that every time that the line was being cared for, it is an opportunity that bacteria or any sort of microorganism would go then into the bloodstream and cause one of these infections. And so we knew that it needed to be standardized, but how do we again sort of close that no-dew gap? And so these cognitive aids that were created with the checklist engineer were very visually appealing, but they took many iterations. And so we again would take them back to the patients, the patients that were caring for the line. We would give them sort of these pilot tools, take it home, see how it works, and they would provide feedback back to us that then the checklist engineer would restructure it until we had a final product. And so the most utilized one was that quick guide, which sort of was like a flashcard with a ring attached, which you would always just have the two sides facing each other for the test that you needed without ever having to touch it. And there was there was a larger one, which was utilized more in the hospital setting as the nurses were teaching the patients and the and the home care versus home care givers how to take care of the central line. Because what we realized was also that we needed to standardize the trainers. The trainers were really incredible. They were doing care appropriately, but everyone had their little nicks of how they would do things. Maybe sing this song for 30 seconds while you're flushing the line, and that song could vary and could be 45 seconds for some people, it could be five seconds for the other person. And so, how do we standardize that for the trainers as well, which were really mostly the nurses? And so we utilized this other cognitive aid, which was bigger, also just one page of illustrations where they could use it for caring for the line, really prompting them to do the steps as they should, but also teaching the family in the way that we wanted it to be done in the home.

SPEAKER_01: 35:28

So it sounds like you benefited a whole lot from methodologically from this collaboration with our Yadni Labs and this checklist uh engineer. One thing that occurs to me is there must have been some a lot of real life challenges. And I wonder if if there were any challenges related to equity, how you deliver this clear teachback process to people with different levels of health literacy, with different primary language. How did that factor into the work?

SPEAKER_02: 35:56

Well, I want to go back to our donor who at the very beginning, our donor said to us, How do you know everyone has materials in their home that they can create a clean surface? So she made us think about equity at the very, very beginning. And so part of what we did is in addition to your more standard health care supplies, we used some of the funding she provided to have a what the, I can't remember what we called it. It was basically a paper bag filled with things you use to clean. And we didn't try to guess who needs this and who doesn't need it. We grade it uniformly to everybody. So she kind of pointed us in a good direction at the very beginning. Um, and the other thing that was sort of nice about all these teaching materials, we eventually ended up having them what, Spanish and Arabic, which were our two dominant non-English languages at that time. So we didn't even know what they said, but thankfully, well, Chris knew what the ones in Spanish said, but neither of us knew what the ones in Arabic said, but we compare. So we did do that as part of this work. And then related, it's not just health equity. It's have you ever been in a situation where you're learning to do something for the first time and you're doing it on your child? We had one practice mannequin so that you didn't have to just practice on your child because that was awfully scary. But the other thing is, you know, you've studied it in the hospital, you've practiced it, but now you're home, right? It's kind of scary and very different. So the other thing we did to support families, and this is all families, it didn't have anything to do with anything else, was there was what was called a teachback that would happen in the clinic. And it was a great idea. And initially, all of our attempts completely failed to even do the teachbacks. And we realized it's because the very language we used when talking about this to patients and families, people felt incredibly judged and scared they were gonna be considered failures. Um, and we ended up having to practice the language by which we were really asking them to help us make sure we were doing a good job teaching these complicated skills. And Chris, I don't remember what else we did, but we had to do all this work to just be able to engage people in this. But then we had this phenomenal nurse in the clinic, who, thanks to our funding, we could actually support some of her time, who did most of the teachbacks. And she learned from, again, from the families, what was hard in the home that was and what was different, as well as if people needed more support, especially, you know, maybe mom was taught in the hospital, but it's grandma who's doing a lot of the care at home, things like that. So the clinic teachback was an incredible part of the program that I think in some ways leveled the playing field because it gave us much more content about what was working and what wasn't working for individual patients, that then the teaching could be even more supportive at the areas where they were struggling. Chris, what would you add to that?

SPEAKER_00: 38:59

I would say that we mostly normalized having to do a teachback in the clinic. It was an expectation in the same way that we expected every family to be able to demonstrate correct line care prior to going to the hospital. We then normalized it so that when you came into the clinic anywhere from your first to your second ambulatory clinic visit, it was really an expectation that you would perform central line care with one of our nurse champions. And so, as Amy said, we needed to really change how we approached this because I remember there were two families as I was walking in clinic, and one mother told the other one, Are you ready for your central line test today? And that, I mean, she had no idea that I was one of the people involved in this. And obviously that struck me. And then I went back to the team and said, We need to do something about this, because obviously it cannot be a test. And if this is being interpreted this way, we're never going to have any engagement whatsoever and can affect obviously our patients so differently. And so we worked very closely then with the with the patient family advocates to really understand what the language would be that would be most appropriate of how we would normalize this, that would this was expected as their routine care, that it was going to be embedded into their routine care. And ideally, if we had the opportunity, then we would go to the home as well to be able to support them. To your point, Jason, I think those brought some complexities, right? Because it's hard to welcome a stranger into a home where you're performing complex medical tasks with the many other complexities that go into home care. And so it was it was challenging, I would say, to then go into the home of some of the patients to really observe central line care for many, many, many reasons. I think the other thing that we also learned is that some teenagers were caring for their own central line, and we had not accounted for that either. And we needed, again, to develop some language that would help engage these teenagers, sometimes even before more like preteens, who were very capable. But how do we engage them in again being trained in a complex medical task when they're not clinicians in any way? And so it really went back to working with our stakeholders, working really with the patients and the home caregivers to see how do we develop language that really engages families into doing the work together.

SPEAKER_01: 41:35

Yeah. It sounds like you had a lot of a lot of important hurdles to overcome. And I imagine, you know, succeeded in overcoming a lot of these. Can you tell me a little about the results of this work? What was the, what were kind of the final bottom line numbers here?

SPEAKER_00: 41:51

So we measured different things. The first thing that we wanted to measure was the percentage of families and mostly one caregiver. We focused on the primary caregiver in the home, which could be either the own patient, if it was a preteen or a teenager that wanted to care for their own central line or a home caregiver, and whether they could be independent in central line care. And we had a standardized way of assessing that. And what we determined was that if you were performing central line care during one of these teachbacks and you need a no prompt from one of our nurse champions, then that meant that you were independent. And so we were able to achieve more than 90% of home caregivers being independent with central line care. That had never happened before. No one had documented this or attempted this before. And it was the first time that we were utilizing a standardized curriculum to have families learn how to perform a complex medical task at home, but then also be proficient in that, demonstrate that they are proficient in it. And then what we wanted obviously was that was our process measure. We wanted that to be tied to an outcome measure, and that was the ambulatory collabsy rate. And so we demonstrated about a 50% reduction in ambulatory collabsy rate, and that was done over about five years or so. And we know that probably that took a period of time because although the denominator can be quite large, the numerator is actually quite small, and so the rate was very small. And so, in order to have some statistical significance, it was going to take a large sample and therefore a significant amount of time. And so we saw about a 50% reduction in ambulatory CLABSE, which again, there hasn't been a lot of work that has concentrated in the ambulatory setting, especially not in ambulatory CLABSE. And to be able to do this with the focus mostly being on home caregivers was really an incredible opportunity.

SPEAKER_01: 43:42

Wow. A 50% reduction. I mean, that's that's truly remarkable. Congratulations. Amy, in um in a 2016 article, uh, you were quoted, uh, if I can just share a quote, you said, at a time when many aspects of care are being shifted to the home and of heightened attention to safety and costs, this is the new frontier. Uh, what we learn about preventing outpatient bloodstream infections in these patients could have broad relevance. Nine years later, where have we seen this new frontier explored? And uh where do you think the lessons from your work are most relevant today?

SPEAKER_02: 44:18

It's a great question that I will confess that as a retired person, I don't keep up with the medical literature. So Chris may have things to add that I don't know. But I was always struck that every time I did a lit search for anything related to quality or safety, 99% of everything was about inpatient. And then I start to see a little trickle of, oh, maybe someone tried to do something in the clinic. And that's it. There's a lot of improvement that has happened in emergency rooms. But in a lot of ways, those are like a busy inpatient unit there, you know. So, but you know, people had done so little in a setting that looked anywhere outside the hospital. And obviously, big bad things happen in hospitals, but on a practical level, a lot more happens in the home. And so I was really excited when Solutions for Patient Safety, which is the big national pediatric safety collaborative, actually, after many years said, you know, this angulatory classy thing, that'd be a really good thing to work on. Let's start getting our teams organized around that. And Chris, you can probably provide some updates on, you know, how that work has or hasn't progressed. And similarly, during one of their national learning sessions, they were very interested in you know, when I was at Nemours presenting on the many different things that were being done in the outpatient setting, including like how do you get to make sure that's the right patient who's checked in for the appointment? Because, you know, there are little things like that, but if you don't do that, boom, everything is gonna go wrong from there. Or some of the work that was done on preventing falls in the outpatient setting and how they engage the whole clinic. In you know, you can't sit the patient on the counter while you're checking in and oh, your shoelaces are on pie, let me help you get them. But all these little things that people just weren't really thinking about. So I'm hoping Chris is going to tell me about all the wonderful new things that are happening in outpatient or home, not even outpatient, but home-based, although I fear she is not.

SPEAKER_00: 46:40

So I think mostly the thing to highlight is the work that Solutions for Patient Safety has been doing. And so um they were able to gather a number of different leaders that have collectively worked on this to try to focus again on ambulatory collapsing prevention, very similarly to how we did it at Boston Children, but at a larger setting, mostly at a national setting and some internationally as well. And so the idea was really to have the home caregivers being the main stakeholder again, so that instead of necessarily providing a script of how to do things, it's really to learn from them, having learning conversations about how it is that we are training caregivers to go into the home and then take the next step after that. So they have some preliminary pilot cohort that they're working on. Some of those results are not available yet. But I think the most important thing is that a lot of the work is concentrated on preventing ambulatory collapsy in the outpatient setting. And it's being done now nationally or internationally, if you will, which has not been happening, obviously, in the last decade or so. So incredible progress that has been done. I think the other main point to your question, Jason, is how do we apply this really to other areas? And so we know that in pediatric oncology, we know that our patients go home with very complex medical regimens for medications, sometimes 10 to 15 medications that they have to take. And unfortunately, the systems that we have in place do not support home medication safety. And so, if we can learn to adapt some of the things that we learned from ambulatory CLABS, meaning how do we co-design interventions with home caregivers? How do we measure improvements in other areas that occur in the home? And how do we teach really, or how do we support how to do how do we perform complex medical tests in the home to prevent things like medication errors? Then that would be the goal, is really to scale and spread the work. And so there is a lot of work that is being done there. I think it's a little bit harder to measure because ambulatory collapses obviously they come into the hospital always whenever there is an infection. When you have an error in medication, that may lead to a problem, but it may not. And so it's very hard to measure that. And I think that is where we are needing to spend the majority of our energy is really to understand how to measure because you can't improve what you can't measure, obviously.

SPEAKER_01: 49:15

Given the desire to spread this work further and to have impact in areas both within and outside uh ambulatory CLABC, what advice would you give to hospitals who want to launch their own family-centered ambulatory CLABC or other uh ambulatory safety projects that uh, you know, maybe an organization that wants to do this but doesn't know where to start?

SPEAKER_00: 49:38

I think most importantly is really working with the right stakeholders. I really cannot put enough emphasis on the importance of us working with the families and the patients. I mean, there were teenagers again that would give us feedback as a teenager would do, right? And it was great because that's what's happening in the home. And so we, as you said earlier on, Jason, we think we assume what is happening in the home. We assume how we can best design care in the home, but we have no idea. And so I think the partnership of doing that taught us some incredible lessons. Most importantly, is that we need to be there with them and let them really design these interventions as much as possible, obviously with the support and the expertise that others can provide, but it really has to come from the voices of the patients and families because they are the ones that are experiencing all of these different complex situations.

SPEAKER_02: 50:36

If I can add to that, I think what systems, hospitals, institutions can do is one, they don't already have a patient-family advisory council, you know, get one. In fact, encourage as many specialty programs within their hospital to have their own. Get over the, oh, we can't tell patients and families the truth. If you can't be transparent, you can't do this work, right? And because otherwise you can't really get good input in solving problems if you can't include the patient and the family and what those problems are. So I think those are two really important institutional lessons. And uh, you know, yeah, we're we're very peaky in our approach, obviously. But you know, for example, the children's hospital in Hartford, Connecticut has one of the best approaches to patient family advisory councils, and they send the chair of their big council for national training, then they do train the training, they support programs like that in every part of their whole hospital. I think that goes light years to even creating the atmosphere in which patient safety work can take place and is critical if you're gonna try to do it in the outpatient setting. And I just have to give a plug again for medication safety. Only so many people have a central line at home, right? It's a pretty small number compared to all patients out there. I would love if people can think about what you can possibly measure for home medication safety that could allow really that work to proceed forward because there are so many patients of many sorts who have very complex home medication regimens. And, you know, I heard of one hospital where they actually looked at their patients on their most complex regimens, and then they would have a pharmacist get involved to try to make their regimens less complex. Well, that's great. But they're still going to be left with patients on complex home medication regimens, and how do you make that safer for them? And even what proxy measures that we could come up with, including, you know, simple questions like do families under I say families, patients and families understand what their medications are? Can they report how they're giving them in some way that's relatively accurate? You know, or is it normalized that you can actually ask a patient medication history without saying the way I used to do it, which is I would read a list of meds aloud to the mom and say, this is what your child is taking, isn't it? As compared to, wow, it must be really hard to give your child their medications. What do you actually do? How does it work? What do you do when you screw up? Because I would certainly screw up. You know, things like that that would go light years, I think, to thinking about home medication safety, which affects so many patients, adult and pediatric.

SPEAKER_01: 53:34

I think Chris mentioned earlier the size of the denominator and the numerator with the the collabsy work. I mean, what you're talking about with the medication safety at home is so much bigger of a denominator than you know than the relatively smaller size of the number of people with the central line. So that would be uh, you know, an area ripe for improvement. If this work flourishes, if this type of work flourishes in the next five years, what does healthcare look like for pediatric hemonk or pediatric care generally?

SPEAKER_00: 54:06

I think it goes beyond just pediatrics. I mean, I think there's so much scalability beyond just the pediatric world, certainly beyond pediatric oncology. But if if you think about it, if we could prevent errors and I classify errors as any complication that can occur in the ambulatory setting as care that is not provided as intended, that could lead with to some incredible improvements in the inpatient setting, which people obviously have so much interest in, right? If we think about readmissions, for example, there are so many things that potentially lead to readmissions because our communications are not great, because errors occur in the outpatient setting, because patients, for example, we have many patients that have these devices in the ambulatory setting that malfunction, and the only way that you could get it to function is by going to the emergency department. And so that clogs up the emergency department, obviously leads to a readmission. And so if we could link the hospital care to the ambulatory setting, and especially in the home, and really then provide the capabilities for the system to work in the ambulatory setting, how much more impact could we have than for the inpatient setting, freeing up beds, freeing up the emergency department, and then allowing other resources to be utilized in the appropriate ways?

SPEAKER_01: 55:29

Anything to add there, Amy?

SPEAKER_02: 55:31

Well, I was just thinking, for example, could we improve outcome for solid organ transplant by getting people to give their medications as intended in the home? And also that means the providers have to do their part of making sure the clarity of what medications their patients are supposed to be on. You know, talk about things doses go up and down, but patients, you know, can we reduce the rejection rate? Can we prevent hospitalizations for complications? I mean, there are so many areas of, you know, and I'm sure, you know, so many adult patients with complex medical conditions who are on these crazy home medication regimens. So how do we actually make that happen? I think is challenging. And I think we need some really creative approaches to what we can measure, what are the proxy measures that will help us? And you know, if someone's a lot smarter than me at big data, you know, looking at emergency room visits or medication overdoses, you know, could you look at that in a very global way, even though your interventions are going to be in a very local way? I don't know. Those are my big thoughts. Get to figure out how you would do them.

SPEAKER_01: 56:44

That call to action and hopefully inspiring uh someone listening to pursue that work is a great place to round out the conversation today. Dr. Chris Wong, Dr. Amy Abillet, I really appreciate you coming on the podcast today for sharing your story in in such beautiful detail and uh also with such striking results. So thank you for sharing that. For listeners who'd like to follow your work or connect with you, where is the best place? LinkedIn or your your website or some other way?

SPEAKER_00: 57:13

Yeah, mine for an example would be LinkedIn, and then at the University Hospitals webpage as well, you can find my profile as well, and and you can email me at any point.

SPEAKER_01: 57:24

And Amy, how about you now? Entered into retirement, is it easy to to uh connect with you?

SPEAKER_02: 57:30

Actually, I still have my LinkedIn profile, so that is definitely there. And I enjoy mentoring. So I'm more than happy when someone reaches out for mentoring. That's actually one of my most that's the most rewarding thing I've ever done. And Chris will be a lovely example. But just I I love to mentor people and to help them think about how they can, you know, do stuff. In fact, I'm gonna get to mentor some people in quality improvement through the American Society of Kematology this coming year. So feel free to use my LinkedIn profile. I might not respond immediately, but I will respond.

SPEAKER_01: 58:04

Very good. And they'd be uh they'd be better off for it. Um I can see the mentorship relationship has been uh mutually beneficial and produced some great work. We'll we'll link to those resources and uh your contacts through LinkedIn in the show notes. Again, Dr. uh Dr. Billet, Dr. Wong, thank you so much for joining me and for for sharing uh how you make care safer, uh, not just inside hospitals, but in the places where families actually live their lives. Thank you so much. Thank you. Thanks so much for listening to today's episode of Leading Quality. If you enjoyed the show, please take a moment to like, subscribe, and share it with someone who might find it useful. You can find all our episodes at leadingquality.bugsprout.com or in your favorite podcast app. The show is written and hosted by me, Jason Meadows, edited by Milan Milostafievich, and produced by Thrive Healthcare Improvement. See you next time.