When Patient Anxiety Gets in the Way of Care

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0:00 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. And what we learned with the pilot study is that we were able to reduce the mean age of sedation from 10 to three. Roger Holzberg, who is the creative director and founder of Reimagine Well. And what makes this all fascinating is that Roger had a great experience working for the Disney Company for years and years and years. And then he was faced with the diagnosis that sort of caused him to sort of take a pause in his life.

And he's now creating wonderful experiences for patients who have cancer. I wound up at Walt Disney Imagineering, which is the part of the Disney Company that builds the theme parks and cruise lines and sports complexes. How does that memory with you today drive what you do? The profitability of your hospital is not only determined by whether there is an insurance code to attach to something. Carefully consider what you manifest.

Manifesting is easy. Finding the right thing to manifest is hard. Revenue doesn't stall because your team stopped trying. It stalls because of friction. I sit down with other commercial leaders who find that friction and fix it. I'm Terry Coutsolioutsos. Let's get into it.

Welcome to the Zero Friction Podcast. Terry Coutsolioutsos is here today. And I have probably one of the most unique guests getting ready to participate in the Zero Friction Podcast than I ever have. Roger Holzberg, who is the creative director and founder of Reimagine Well. And what makes this all fascinating is that Roger had a great experience working for the Disney Company for years and years and years. And then he was faced with the diagnosis that sort of caused him to sort of take a pause in his life.

And he's now creating wonderful experiences for patients who have cancer. And so, Roger, I'd love for you to kind of give us a little personal journey as well as tell us about, Reimagine Well what you're trying to do there and the people you're trying to actually make a positive impact with. So thank you for being here, first of all. You're welcome. Thank you, Terry. Just to clarify, Reimagine Well, we started working in the pediatric cancer space, but our volume of work grew, and some of the most significant work we're doing now is in adult palliative care, end of life, and with veterans and anxiety reduction.

2:50 But I'll be happy to give you an overview of how the journey began. I grew up in a medical family. My dad was actually a VA physician. He wanted me to go to med school. And after losing my best friend who was my cousin to cancer when we were teenagers to an aggressive adolescent, young adult cancer, and then my mom When I was in my 20s and my parents were divorced and I was making her end of life decisions as the oldest child, I vowed that medicine was the last thing in the world I wanted to do.

And when my dad said to me in the early 1970s, so of course you're gonna go to med school and work on this cancer problem, right, I said, hell no, I wanna be as far away from that world as I possibly can. I'm going to art school. So I did. I wound up at Walt Disney Imagineering, which is the part of the Disney Company that builds the theme parks and cruise lines and sports complexes. Everything dimensional that the Walt Disney Company does comes out of Walt Disney Imagineering.

I often say I'd still happily be drinking the Disney Kool-Aid were it not for a bump in the road on the eve of my 50th birthday when I sat across from a physician who said to me the three words that one in two American men and one in three American women here in their lifetime, you have cancer.

I often describe that moment as the terror moment. I describe it as a rush of white noise running by your head. You suddenly start to lose equilibrium. you're seeing a physician speak words that are a language that you don't understand, and you go into shock. I would say I was in shock for probably a week and a half.

One of the best pieces of wisdom I got came from my stepmom who was a cancer survivor who said to me, you know, all you need to focus on right now is the diagnosis is getting a complete and clear diagnosis so that you can select the right treatment. And The light bulb went off. I had gone to Google, like everyone does, and 77 million returns later. You're lost. But as soon as she said, you know what, you got to deal with the diagnosis first, I realized it's a journey.

5:47 And like almost any other journey, it begins with the first step. And the first step in a healthcare journey is diagnosis. To understand what you're dealing with so that you can make the right treatment decisions and Taking it in in that way enabled me to take a deep breath and have a direction to go in.

How does that memory with you today drive what you do? Like how does that sort of moment with that experience impact you moving forward with the work you do today? Well, anxiety reduction is a big part of what we do now, I would say, in many of the different healing modalities that we develop.

I believe this statistic is, you know, a patient highly anxious is able to retain at best 20% of what they hear in a physician's office. I always encourage people now to bring a caregiver with them if they can to help listen to what's being said or to record it with one of these and listen to it later so that you can take it in in a time where Yeah, you're not dealing with the rush of white noise and the shock.

Let's talk about your experience as an Imagineer with the Disney Company, which is world renowned for creating experiences across the world for many people. And they actually have, you know, experience type of training and those types of things for other companies. So talk to me about, like, your experience with Disney and how that plays a role today with what you do and building these experiences for people and other, you know, whether it's cancer or trauma or anxiety or whatever it might be. 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 a part of onboarding those of us who came in to work as Imagineers.

One of them was a designer named John Hedge 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 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.

8:51 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 Parks architecture of reassurance into an architecture of healing.

After my diagnosis, it was four years before I left the Walt Disney Company and transitioned to the National Cancer Institute. 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.

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 use every tool, every creative tool there is to help normalize a child 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 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 scar.

11:36 They said, 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 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 for us, 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.

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 fit. 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 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 of Orange County reached out and said, is the government the only organization you work with? To which I said, no, 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 never about making a product to try and sell it. If the clinician or a partner has a problem that we believe we can help them resolve, we're all in. So, Leonard Sender said, my pediatric patients get a cancer diagnosis, they become isolated, depressed, and withdrawn. And those three things together are not a great cocktail 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 survey to about 20 of his families.

14:20 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 back and said, oh, the special place that would heal me, that would be a hospital.

That has never been the answer. So that gave rise to the first, I would say, product and experience that we developed in Reimagine 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 in a hospital built in the 1970s with CNN on and a monitor in the corner. My definition of healing would have been swimming in the ocean with dolphins.

And then 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 provided, 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 Infusionariums look like? I think that would be very helpful. So this is a video of actually the chalk adolescent young adult Infusionarium I'll talk over it.

16:59 These patients are in their own AYA Infusionarium, which got wired with an Xbox controller. And they decided that that particular night, 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 pilot the rover on Mars via the Mars Yard at JPL.

They then told that Jet Propulsion specialist that when they grew up, they wanted to be engineers, right? 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.

You know, so 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 one particular line in this study I remember which lit me up. The question for the patients was, are you an optimist or a pessimist?

Self-declared. 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 I hope that that has a kind of clinical impact that NCI was able to track to some degree.

20:14 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 and impacts the ability to turn the room over and impacts a lot of different things. I'm sure that the experiences are better. 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.

Yes, that's interesting, Terry. We found immediately that staff members were going into the Infusionariums after hours and using them. You know, 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 in pre-construction phase where you actually could impact the architecture. And I mentioned the question that we went out to pediatric patients with. We use a version of that question always.

The question we went out to the patients and families 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, to 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 mirab oriented to the east so that you know 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.

23:28 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.

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 Reimagine Well and how that, how that operates today.

Well, thanks for the question. Let me start off with the process. I can tell you when the process came to light in a big way and showed 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, that's the policy. And as we know, if they're doing 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, and I, and I did a lot of interviewing and, The flow, often for those child life specialists who want to bring a patient into that radiation room is they give them a two or three minute overview if they're lucky in an office, then they walk them 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.

26:28 And they remind them of the mask they made to go over their face if it's going to be cranial radiation. And then they take mom and dad away. 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 peeds. 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 linac radiation room. So this is literally the exact same room that they will go into. If you are a gamer, you know that you 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 the 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 blush animal here, which is Casey the Lion. Now, I'm going to 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? We're now the radiation machine is coming out. It's going to go over and you're going to hear what it's going to sound like. They're playing this with an Xbox controller on a computer. If the patient feels like it, they can do it a second time with a VR headset, which makes it very intense and very immediate. What I love about it is when it works, that patient goes into that room They look at the clinician and go, I've played this game before.

29:03 It wasn't that good. I know what's going to happen. I'm going to get on that table. That thing's going to 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? If I'd pitched that idea at Disney, I'd have gotten fired on the spot. 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 3.

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. 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 the one thing that you'd want them to take away from our conversation today?

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 faults, 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 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 imagine ways that your hospital could be profitable beyond just attaching an insurance code to a procedure.

31:57 And so where do you think the architecture of healing goes next? And I want to frame it a little better for you so that You know, today the world of healthcare is changing and it's evolving and it certainly takes its lumps and bumps and 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 even since our previous discussions, you're starting to touch other areas.

So where does this architecture of healing experience, where is it going next in your mind? 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 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 healthcare 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 healthcare on these things is necessarily making people more healthy or making them more resilient. One of the things that makes me sad is the blue zone studies Initially, the studies of the parents who were over 100 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 that anybody can imagine it happening here.

35:08 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 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 America.

You know, and that's a great pivot to my next and my last question for you. And the question is very simple and 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 you know, what would 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? 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 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.

38:10 So manifest the goodness. Manifest the things that bring the greatest good to the world. You know, I think that's a solid comment to leave on. And, you know, for those of us that believe in, you know, what we throw out in the world is what we get back is, you know, a really great thing. And so I'm one of those who actually falls in line with the manifestation process. And when you typically, when you throw good out, good comes back. And when you throw a bad out, bad comes back.

It's kind of interesting how that boomerang seems to happen. So I fall completely 100% 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 and that experience for others who are in need. So thank you again. You're welcome. Great to talk to you again, Terry.