Transcription complète de Patient Experience: A Former Disney Imagineer on Patient Anxiety | Roger Holzberg, Reimagine Well

what you do and building these experiences for people in other whether it's cancer or trauma or anxiety or whatever it might be. speaker-0: It was foundational. I was fortunate to come into Walt Disney Imagineering at the time where the last remaining members of Walt Disney's core team were still alive and still part of onboarding those of us who came in to work as Imagineers. one of them was a designer named John Hetch. And I will hold up one of John's books, which is called Designing Disney. And John was the principal art director of Disneyland 1.0. John invented the phrase which we learned at from John in Imagineering called the architecture of reassurance. He believed that with dimensional design and story fused together in a seamless way, you could create a safe place. For families to play. And that was part of what Walt Disney really wanted to do with Disneyland and then the Disney parks, to create a place where families could come together and free of anxiety, free of the stresses of life, they could play and enjoy one another's company and bond as a family. I what we do at Reimagine Well, from my point of view. Is adapt the Disney Park's architecture of reassurance into an architecture of healing. The after my diagnosis, it was four years before I left the Walt Disney Company and transitioned to the National Cancer Institute, with having the National Cancer Institute as a first client for my company. we can get to that in a moment, because that was sobering and enlightening in its own way. but In the four years between my diagnosis and that happening, I did a lot of volunteer work. And some of that volunteer work involved some redesign at a pediatric hospital. But part of it involved taking an attraction that I had worked on at Epcot, which is now in all of the parks around the world and the cruise ships, called Turtle Talk with Crush, and adapting it for Children's Hospital of Orange County. So Anyone who remembers Finding Nemo might remember Crush the Turtle. We adapted that on a smaller scale for Children's Hospital of Orange County. And I was able to be on the hospital end of the implementation of that. I met my first child life specialists at that point, whose job and career it is to normalize a patient's life while they are in treatment. And I looked at that and went, why didn't I have that when I was an adult patient? Right. But they are fantastic, amazing people. And they use everything from puppetry to painting to coloring to costuming. They they use every tool, every creative tool there is to help normalize a child's stay in the hospital. Well, we brought in Turtle Talk with Crush, and I'll never forget the first time Crush the Turtle, the actor performing Crush was in Disneyland, was interacting. With a pediatric patient who asked Crush if Crush had ever been bitten by a shark. And the the actor, as they were sort of coached to, made a bit of a joke about it, how they were able to avoid the sharks. And then this patient stood up and lifted their shirt and showed their scarf. speaker-1: Yes. speaker-0: They said this was maybe a seven or an eight-year-old who had gone through some major surgery and said that their siblings or friends had said kind of looked like a shark bite, and then asked Crush if their shark bite hurt like their like the patient's shark bite hurt. And I realized the architecture of reassurance was different than the architecture of healing, in that. The most important voice in the architecture of healing had to be the voice of the patient. And Crush the Turtle needed to be a comfort friend and not a jokester. that was a big aha moment. And that led to the idea of engaging with patients about their healing places. After working on that, I did the media for the launch of Livestrong.com and All of that work bubbled up to a high enough level to get me recruited to be the first creative director of the National Cancer Institute. the after a couple of meetings with a gentleman who is still a very good friend of mine, I said, it's just not in my DNA to leave Disney and become a Fed. But if I left Disney and started a company, what would a three-year contract look like? And that's how I left the Walt Disney Company. we redid cancer.gov. We took the we took the institute into social media and created a media production studio so that NCI could tell its own stories. But along not long after I started my work with NCI, the head of oncology, pediatric oncology at Children's Hospital Orange County reached out and said, Is the government the only organization you work with? To which I said No. What what do you want to do? Tell me the problem that you want to help work on. Because for me, it's always about problem solving. It's if it's never about making a product to try and sell it. If a clinician or a partner has a problem that we believe we can help them resolve, we're all in. so Leonard Sander said, My pediatric patients get a cancer diagnosis, they become isolated, depressed. And withdraw. And those three things together are not a great cocktail with oncology. How do we change the chemotherapy experience and get them to feel different about it? And I asked him if I could go out with a s with a survey to about 20 of his families. He said, Well, you're not a physician. What kind of survey? What kind of question do you want to ask my patients? I said, Really one question. If you could get your treatment anywhere in the universe and there were no rules, What special place would help heal you? He said, that's an interesting question. And I'll tell you, in the 16 plus years that we've now had the opportunity, and I call it an opportunity, to ask pediatric and adolescent young adult, AYA patients, that question. Never once has one of them come come back and said, the special place that would heal me, that would be a hospital. That has never been the answer. So that was That gave rise to the first, I would say, product and experience that we developed in Reimagined

Well, and it's called the infusionarium. And the idea is that we can get our chemotherapy infusion in the place that we believe that would heal us. I know that when I was in treatment, I watched paint peel off of walls, you know, in a hospital built in the nineteen seventies with CNN on and a monitor in the corner. That's as cl my my definition of healing would have been swimming in the ocean with dolphins. Right. and then, you know, I I the another kind of light bulb went off and I went, wait a second, you're a Disney imagineer. Your job is to put people in immersive environments. You could have been there in that environment every way, but physically. So that's what the infusionarium does. And we realized very quickly. That clinically, you would call what an infusionarium does, distraction therapy. And distraction therapy has a long history of patient benefits. you know, very quickly we would hear clinicians say the need for side effects meds are dramatically reduced. My patients aren't getting nauseous while they're in there. They aren't complaining about headaches. and that became a quantifier as to whether the distraction therapy we were providing. Which was being initiated and driven by the patients themselves was beneficial to them. And we were happy that it looked like it was. can I show you a brief video of what some of those confusion was? speaker-1: Think that would be I think that would be very helpful. speaker-0: So this is a a video of actually the chalk adolescent young adult infusionarium. I'll talk over it. these patients are in their own AYA infusionarium, which got wired with an Xbox controller, and they decided that that particular night they would race racing cars would be the most healing thing they could do. The infusionarium also can take them out of the hospital, and there were a group of pediatric patients. Who really wanted to go to outer space. So for a special event, we took them to NASA's Jet Propulsion Laboratory, where they met a they met a planetary protection specialist who took them on a journey to JPL, where they got to they got to pilot the rover on Mars via the Mars Yard at JPL. That was, and they then told that pediatric, they then told that that jet propulsion specialist that when they grew up they wanted to be engineers, right? The this was largely a group of young Latino boys who were in cancer treatment at that point. One of the earliest, most impactful responses I ever had was from the parent of one of those children after that. experience came up to me and said, before this happened, my son didn't know what an engineer was. so I I was still working at National Cancer Institute at the time, and I remember reading a study that even cemented more the idea of what an infusionarium was about into patient care. There was a NCI, National Cancer Institute, had done a long-term longitudinal study at the, I believe, 27 or so NCI designated cancer centers, late-stage diagnoses of multiple advanced cancers, and five year survivorship. And there was there was one particular line in this study I remember which lit me up. The the question for the patients was, are you an optimist or a pessimist? Self-declared. the the and then you look at five year survivorship. And there was a graphable significant higher five year survivorship for like diagnoses of self-declared optimists. Well, what's that about, right? I think about the infusionarium. I think about a patient being treated in the environment that they believe will be healing. Empowering a patient to do anything while they're in treatment is positive, but empowering them to be able to be in their healing place, I hope that brings optimism. And, you know, I hope that that has a kind of clinical impact that NCI was able to track to some degree. speaker-1: Yeah, I'm sure it must because I do believe that one of the friction points from a caregiver perspective is just anxiety and needing to sedate and you know it impacts the patient, it impacts the ability to turn the room over, it impacts a lot of different things. I'm sure that the experiences are better, the the The facilities are run more efficiently, more effectively. I'm sure it has an impact not just on the patient, but I'm sure it has a great impact on the staff as well. speaker-0: Yes, that's interesting, Terry. We found immediately that staff members were going into the infusionariums after hours and using them. you know, we found the the most recent immersive experience we've done, and it's the largest one, is at the new city of Hope Hospital in Orange County, California. So Annette Walker is the president of that hospital. Annette believes, as does the City of Hope, that a healthy person requires a healthy body, a healthy mind, and a healthy spirit. And Annette came to us and said, I want to develop a spiritual care center that treats the spirit while our patients are in cancer therapy at our hospital. And This was a three plus year project. it's one of the few times that we've gotten to design the architecture when the building was, you know, in pre-con in in construction phase where you actually could impact the architecture. and you know, I I mentioned the question that we went out to pediatric patients with. We we use a version of that question always. question we went out to the the patients and families and and faith leaders for City of Hope was if you were in cancer treatment and in the hospital, what special place would help heal your spirit? And we got back five different faiths, which was not a surprise. And we also got back to nature. Two places in nature. And it was an extraordinary project to work on. We integrated healing candles from each of the faiths. And it's completely immersive, meaning you can walk into the room, touch a button, and the room can transform itself into the Green Dome Mosque with the Mihrab oriented to the east. So that which way to prayer, if which way to pray, if you are a member of the Muslim faith, and that

location at sunrise is the most healing place that your family could be at that moment. similarly, it can be a California beach at sunrise, where you may have your most wonderful warm memories with your family. but Annette knew. that in designing this space, she needed to allow programming for her staff to utilize it as well. and they are. speaker-1: You know, which kind of leans me into this next question. Because you're really serving a purpose and you're solving problems. And that was one thing that we really focused on before was, you know, you're really not selling anything. You're you're building something to solve a problem, and that's when you go to work. So talk about like how that principle and that culture has been established at reimagined well and how that how that operates today speaker-0: Well, thanks for the question. Let me start off with the process. Okay. the the I can tell you when the process came to light in a big way and show you a demo. I was on an innovation panel maybe six or seven years ago in Washington, DC at the Community Cancer Center's yearly conference. And also on that innovation panel. Was a child life specialist named Deb Wagers. And after we were done presenting our innovation work, she said, I have a problem that I think you might be able to help me with. I said, What's that? She said, All of our oncology patients who are getting radiation oncology are being sedated at age 10 and under just by, you know, just just that's the policy. And As we know, if they're doing, you know, something like a 12 to 16 week course of radiation multiple times a week, if that pediatric patient is fully sedated that many times during that short period of time, it can have cognitive effects for the rest of their life. And her challenge was: how do we reduce the mean age of sedation? And I thought about that, like You know what i and I and I did a lot of interviewing and the the flow, often for those child life specialists who want to bring a patient into that radiation room is they give them a f two or three minute overview if they're lucky in an office. Then they walk into a room where there's these crazy noises and these big scary machines and They point out the microphone where mom and dad will be able to hear them and they remind them of the mask they made to go over their face if it's gonna be cranial radiation. And then they take mom and dad away. Right. That patient goes into fight or flight at that point. And at that point, once you've got a patient in fight or flight, you have no choice but to knock them out. Right? There's no talking them down off that cliff. Especially if they're ped. I thought about it and I thought, how can we acclimate a patient before they ever cross the threshold of that room? And what we created, which I'll show you, is a open sourced unity. Gamified version of the Linux Radiation Room. So this is literally the exact same room that they will go into. If you are a gamer, you know that are in God mode at this point, which means you're up high in the room, not close to anything. Nothing can touch you, nothing can hurt you, right? When you are ready to as a patient, and patients are driving this. The pediatric patients are with an Xbox controller, they can come down to kid mode, to kid height. And once they're at kid height, they realize there are some Easter eggs in the room. There actually was one in that monitor. Maybe we can go back and get it. And we always say if the patient gets the Easter egg, great, they get the prize. If they don't get the Easter egg, they get the prize. And the prize is a dimensional version of this flush animal here, which is Casey the Lion. Now I'm going to go into A different, I'm going go into treatment on the main LINAC and do cranial radiation. and so we are doing this with an Xbox controller. We are now hearing the voice of child life say, Remember the mask that we made, where now the radiation machine is coming out, it's gonna go over, and you're gonna hear what it's gonna sound like. They're playing this with a Xbox controller on a computer. If the patient feels like it, they can do it a second time with. And VR headset, which makes it very intense and very immediate. what I love about it is when when when they when it's when it works, that patient goes into that room. they look at the clinician and go, I've played this game before. It wasn't that good. I know what's gonna happen. I'm gonna get on that table, that thing's gonna go around for a little while. I talked to mom and dad. Out of that microphone right there, can we just get it over with? Right. That's like that's if I'd pitched that idea at Disney, I'd have gotten fired on the spot, right? But that's when we hit a home run, when the patient is fully aware. And what we learned with the pilot study is that we were able to reduce the mean age of sedation from 10 to three. So we're pretty proud of that. And that's the idea of taking a problem, thinking about a way you can solve that problem. And then creating that solution and piloting it with the hospital before you share it with other hospitals. speaker-1: Got it. If you're if you want a hospital leader who's watching the podcast today to take one thing from this conversation and has not had the benefit of working with an experienced engineer like yourself, what would you what would the one thing that you'd want them to take away from our conversation today? speaker-0: The profitability of your hospital is not only determined by whether there is an insurance code to attach to something. One of the learnings we got with an adult version of a pre-procedure acclimation program like this was at the New Miami Cancer Institute. They had invested heavily in proton therapy vaults, particularly with cranial radiation, as you know, moving a micrometer, you know, is dangerous because you could be frying healthy brain tissue versus the tumor. Training the patient to be still before they ever go there reduces

the need for rescans, for stopping, for rebooking, and increases the throughput of the facility. If you can increase the throughput of the facility by one, two, three, however many treatments per week, you have increased the profitability of a hospital. without changing a billing code. there are different ways to make a hospital more efficient. And they aren't they all don't need to be attached to billing codes and they you need to think about profitability in a different way. be inventive be creative and and imagine ways that your hospital could be profitable beyond just attaching Yeah, an insurance code to a procedure. speaker-1: And so where do you think the architecture of healing goes next? And I I I want to frame it a little better for you. So that, today the world of healthcare is changing, it's evolving, and it certainly takes its lumps and bumps in the in the media and the market and just in terms of how people are perceiving our healthcare system today. But what you're doing is something totally different. And so And now you're expanding into some even since our previous discussions, you're starting to touch other areas. So where does this arch architecture of healing and experience, where is it going next in your mind? speaker-0: This may not be the answer that you want, but it is my real answer. six years ago I had the opportunity to develop a program at the California Institute of the Arts called Healthcare by Design. And and that I developed the curriculum. I start teaching my next class there actually next week. And I my mission at this point in my life is Not to necessarily always be the person who does the work, but to train the visionaries of tomorrow who will reimagine health care and reimagine the healthcare experience for the future. I think it is more critical than ever because I'm not really so sure that what let's call them the tech bros are doing with putting health care on these things. Is necessarily making people more healthy or making them more resilient. one of the things that that makes me sad is the blue zone studies. Initially, the studies of the parents who were over a hundred and healthy were incredibly positive, but many of those blue zone families, the children, are dying before their parents are. Because they are adopting lifestyle choices that don't take them into golden years in a healthy way. I hope that the healthcare facilities that we are building and imagining in the United States of America can learn from the lessons of other places in the world that have done patient experience in an extraordinary way. We had A brief period of time where the National Hospital Network of Thailand was a client of ours, and boy did they understand patient experience there. Now much of what they do there is medical tourism, but they do it extraordinarily well. And they do difficult procedures extraordinarily well. And they reduce the anxiety of the patient and make the patient flow more economical than anybody can imagine it happening here. And I think so there are lessons to be learned there. there are lessons to be learned from the healthcare network of Sweden, where I had the opportunity to travel and cycle last year. And I was cycling with a cancer survivor who went to the best cancer hospital in Sweden for a very difficult diagnosis. And that hospital said to him, There's a clinical trial in England. That will probably give you a better result, and 20 years later he's fine. We will do everything we need to do to send you there. Get on an airplane, go, register for that hospital, just send us the bills and we'll take care of it. That man is alive today. The hospital network of his country decided that his wellness was more important than the system that it lived within. so I guess my answer would be that we look around the world. In an honest and meaningful way. And we learn and take in the things that are better than what we're doing in the United States of a. speaker-1: You know, and that's a the great pivot to my my my next and my last question for you. And the question is very simple and it involves you going through your experiences in your life as they are today. And if you had the chance to go back to yourself when you were 22 years of age. And you could give yourself one piece of advice, only one piece of advice, based upon what you've learned and maybe what you've, what have been an opportunity for you to know back then, what would that one piece of advice would it be? And it can be professional, it can be personal, it can be any just you know, inspirational advice, whatever it might be, but what would that one thing be that speaker-0: That one piece of advice would be Carefully consider what you manifest. Manifesting is easy. Finding the right thing to manifest is hard. Manifest things because they will bring the greatest good, not because they will fulfill your ego or pay you a larger amount of money, right? I I made mistakes doing things in my younger life because they were ego driven or career driven or cash driven. And I believe I paid a price for that. And post cancer diagnosis I learned that's not a reason to do things in this world. speaker-1: To manifest the goodness. speaker-0: Manifest the things that bring the greatest good to the world. speaker-1: That's I think that's a a solid comment to leave on and for those of us that believe in, what we throw out in the world is what we get back is, you know, a really great thing. And so I'm I'm one of those books who falls in line with the manifestation process and and and when you typically when you throw good out, good comes back. And when you throw bad out, bad comes back. It's kind of interesting how That boomerang seems to to happen. So I fall completely a hundred percent in line with that. And so thank you so much for being here. Thank you for sharing your your imagineer experience with us. And then more importantly, sharing it with healthcare providers who then can expand in that experience for others who are in need. So thank you again. speaker-0: You're welcome. Great to talk to you again, Derek.