Children’s Anxiety With Hospital Procedures: A Father’s Digital Solution
Episode Summary
In this episode, we meet Dom Raban, a designer, software developer, and father of Issy. Issy underwent cancer treatment at age 13. While Issy is now a young adult and cancer-free, the lack of information given to Issy during her treatments prompted her father to create a child-centered app called Xploro. This amazing app was designed to improve the health literacy of children, to decrease procedural anxiety, and to improve the hospital experience for all children and their families.
For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/5evWmZZ4BS8
From This Episode:
About Ewing Sarcoma
Study showing Xploro reduces anxiety about hospital procedures: https://www.healthtechdigital.com/new-study-shows-xploro-app-reduces-procedural-anxiety-in-children/
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Dom’s LinkedIn profile: https://linkedin.com/in/domraban
Xploro: https://xploro.health/
Email Dom: dom@xploro.health
Dom’s Twitter: @DomRaban
Dom’s Company’s Twitter: @CorporationPop
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The Wisdom Shared Team
Audio Engineering by Steve Heatherington of Good Podcasting Works
Co-Producer and Marketing Coordinator: Kayla Nelson
Production Assistant: Becki Leigh
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[00:00:00] Dom Raban: She arrives at the hospital and she’s taken up to a ward. She walks into the ward and she sees children walking around with no hair, holding drip stands, and she looks at them and she thinks oh, these people are dying. What am I doing here? I’m not dying. And it slowly dawns on her. That actually she’s probably got the same as they’ve got and at that point, we’re all just devastated.
[00:00:40] We all just think why has no one prepared us for this experience?
[00:00:49] Carole Blueweiss: Welcome to Wisdom Shared, where parents and kids are the experts and connection inspires change. I am your host, Carole Blueweiss. Today, I have as my special guest, Dom Raban, Issy’s dad and Xploro co-founder. Xploro is an app that was inspired by Issy’s hospital experience when she was 13 and diagnosed with a type of cancer called Ewing sarcoma.
[00:01:15] She is now in her twenties and cancer free, but it was her difficult experience in the hospital that sparked Dom’s imagination. During the cancer care journey, Dom and Issy noticed that there was hardly any information being shared with Issy, both while she was being tested for a diagnosis or before her treatments. Issy and Dom felt strongly that children who are entering a hospital deserve to be empowered by receiving age-appropriate information before they arrive in the hospital.
[00:01:46] That is why Dom’s company developed the child-centered app Xploro, to help kids know exactly what will happen before, during, and after a hospital procedure. To make sure that it was geared accurately for children, Dom created an expert advisory board made up of 12 nine to seventeen year olds. The kids use this app on their own phone or iPad to seek out answers to their questions and to explore. For example, they can take a tour of the hospital or check out the ultrasound machine or the CT scanner, all in augmented reality. It’s like being inside a movie. The kids can express themselves in different ways using their mood diaries and that way parents and the healthcare team can be aware of how the child is feeling at any given moment. The kids who will be getting IVs can also see how they will be connected to an IV machine step by step.
[00:02:44] And they can ask the avatar questions. And when the child types in their questions, Xploro is able to decipher the wildest of misspellings. The kids can even visit operating rooms where they may be receiving their surgery. And who wouldn’t want to know more about an MRI machine way before being slid into the dark donut shaped cylinder? [sounds of MRI machine]
[00:03:18] I can’t imagine what it would feel like for a child hearing that clanking sound for the first time, while a stranger stands there telling them that they shouldn’t move or else they’ll have to do it all over again. I remember being shocked and feeling anxiety when I had my first MRI and was given these strict instructions.
[00:03:36] Imagine if kids could listen to those MRI sounds before the appointment, and if they could see the inside of the machine on their phone in 3D, and ask questions to the virtual technicians who they can dress up and assign a name to.
[00:03:51] Dom is the chair of Corporation Pop, a creative and digital agency that specializes in mobile app development and emerging technologies. He’s been creating stuff for nearly 40 years, from punk fanzines in the late seventies to content for new media platforms now. Dom lives in the UK, but he is marketing and coordinating research projects all over the world. The research has already shown that if you provide patients with information prior to treatment, you not only reduce their stress and anxiety, but you improve their clinical outcomes.
[00:04:26] Let’s listen to Dom tell us about this innovative idea and how Issy inspired him and his team.
[00:04:39] Dom Raban: My daughter was going through her 15th round of chemotherapy. She was feeling pretty rough. And someone came over with this experience measure, which is designed to gather feedback from patients on the experience they’ve had. And the question was how likely are you to recommend this service to your friends and family?
[00:05:07] Now, picture a 13 year old girl who’s feeling really poorly. She’s hating being in the environment. And I can’t say what she wrote on the form cause it’s unrepeatable, but it certainly wouldn’t have been of much use to the surveyors. It was a very, not only a very blunt edge sword in terms of a piece of research from the health authority, but highly inappropriate in terms of the way the question was asked as well.
[00:05:34] Carole Blueweiss: Maybe the people making the questions need to think a little bit more about who’s reading them.
[00:05:39] Dom Raban: Yeah, I think they need to think a bit more about the questions. When they’re designing those questionnaires, they need to do what we’re doing, which is design them iteratively with children so that they get the language right. And you also need to be very mindful of when you ask those questions. Asking someone to give a favorable review of a hospital when they’re undergoing chemotherapy, you are never gonna get a very positive response. So it’s just insensitive.
[00:06:13] Carole Blueweiss: And overall, I get the impression that you say, and your daughter now let’s say many years cancer free and she’s thriving and –
[00:06:21] Dom Raban: 10 years, yeah.
[00:06:23] Carole Blueweiss: She’s in her twenties. So what I wanted to make known is your impression that the medical care that she received was great and you’re not criticizing the medical –
[00:06:33] Dom Raban: Absolutely. I mean, she had great clinical care and the reason she’s 10 years cancer free is because that clinical care was excellent. But what was missing was that information piece.
[00:06:44] Carole Blueweiss: Let’s go back in time for our listeners who maybe in the midst of having heard that their child has been diagnosed with something, in the vein of just them learning from your experience, what was helpful? And the things that weren’t helpful, how did you manage that, in terms of your response to when you got the diagnosis, how you were treated. What you can think of that might help parents that are now going through that. What are some of your learning moments?
[00:07:12] Dom Raban: I think, and I’ve heard this from so many parents and I don’t have any great pearls of wisdom here because we didn’t deal with it very well, and most parents don’t deal with it very well. You’re going through a very traumatic process. I think the thing that we learn is whatever you do, don’t Google because it’s unfiltered information. The very first thing that Issy found on Google and we found on Google at pretty much the same time was that she had a, according to this piece we found, she had a 20% chance of living. That’s not great. That’s not great information to find. So I think never rely on Google information, tempting as it is. So that was definitely a takeaway. I can’t think of any great coping strategies that we had. I think when you’re going through something like that, you’re very much living from one moment to the next and not thinking too much about the future, ’cause the future is so uncertain. It’s, you don’t know what the next scan result is gonna bring or…so it’s, you’re very much kind of living in the moment.
[00:08:22] Carole Blueweiss: I appreciate your honesty. It helps people feel less alone when they just hear that you were one hot mess, you know?
[00:08:29] Dom Raban: Yeah.
[00:08:30] Carole Blueweiss: I would like my listeners to hear the story of how it all began. As horrific as the diagnosis was, the silver lining was that it was caught early. And I think that’s part of the story.
[00:08:42] Dom Raban: Yeah. So October 2011 and my daughter had just achieved her first rising trot in her horse riding lessons. And the next day she was in complete agony. We couldn’t understand what was going on. She was just finding it really, really difficult to sit down. We actually sent her to school that day, which to this day I really regret, but we sent her to school and she came home. She was still in intense pain. So we took her to our GP. Their diagnosis, if you like, was that she had growing pains and she was sent home. I think we gave her some mild over-the-counter painkillers, which didn’t really have any effect at all. And the pain just continued. And so we took her back to see a different GP this time who took her pain much more seriously and referred us to the local hospital.
[00:09:44] So we went up to the hospital via the ER, and she was eventually seen by a doctor who had an idea as to what it might be. And she was admitted onto a ward. And she was kept on the ward overnight because they didn’t have an MRI scanner available and they wanted to do an MRI scan so that they could see what was going on.
[00:10:08] So the next day, actually spent the whole day on the ward in agony, and then eventually at about four o’clock the following day, they took her down for an MRI scan, brought her back up and then a couple of hours later, the doctors invited my wife and I, not my daughter, into a consulting room and they showed us the scan.
[00:10:30] And I’m a designer. I’ve never seen an MRI scan before. Neither had my wife. So we look at this MRI scan and we don’t know what’s normal, what’s abnormal. And the doctors say we need to get a second opinion. We need to refer her to the local specialist center. They didn’t mention the word cancer at all at this point.
[00:10:50] Of course, now I realize what we were looking at was a tumor, but they didn’t tell us what their theory was that she had a tumor, but they didn’t tell us any of that. They said you’re gonna have to wait until a bed becomes available at the local specialist center.
[00:11:06] Carole Blueweiss: Do you think the right thing to do for you would’ve been to get more information at that point or not necessarily?
[00:11:12] Dom Raban: Not necessarily at that point, but I’ll go on and talk about the point of which we realized that Issy had cancer, because that was completely inappropriate. The significance of the rising trot, of course now with hindsight, is that what the rising trot had done was it had disturbed all of the nerves around the tumor site, and that had caused the intense pain. And had she not achieved that rising trot, then maybe it would’ve gone on for some weeks before we identified a problem. And then it might have been too late.
[00:11:43] Carole Blueweiss: Can you just explain what is a rising trot?
[00:11:45] Dom Raban: It’s when you effectively sit up and bounce up and down on the saddle. Now, if there’s any people who ride horses listening to this, they will be screaming at their devices now saying no, it’s not that at all. I don’t know anything about horse riding either, but it’s basically from a layman’s perspective, it’s bouncing up and down on the saddle.
[00:12:07] It was that action that agitated the nerve endings and created the pain. In a way, that was what raised the alarm. But coming back to the journey in the hospital. At this point, we’re in our local regional hospital. It’s just the children’s ward within a general hospital. Issy’s waiting for a bed to become available at this local specialist center.
[00:12:30] And the pain is getting worse and worse and worse. So they put Issy on a morphine drip and every day we kept expecting her to be transferred to the local specialist center which is in Manchester about 30 miles away from where Issy was. And the days went by. Eventually, I think it was two weeks later, during which time we have no information at all, no mention of the C-word, no mention of any kind of prognosis.
[00:13:05] And we are just thinking what? What is going on? Our daughter, despite the morphine, she’s in more and more pain. And then the news comes through that says a bed’s become available at Royal Manchester. She’s transferred by ambulance to the hospital. And she arrives at the hospital and she’s taken up to a ward. No one said it’s an oncology ward.
[00:13:30] She’s taken up to the ward. She walks into the ward and she sees children walking around with no hair, holding drip stands. And she’s never seen anything like that before. And she looks at them and she thinks these people are dying. What am I doing here? I’m not dying. And it slowly dawns on her that actually she’s probably got the same as they’ve got.
[00:14:01] And at that point we’re all just devastated. We all just think why has no one prepared us for this experience? I know that’s a particularly bad experience. I’m not saying that is the typical journey. I think there were a set of circumstances that led to us not being properly informed about what was gonna happen, but that was terrible.
[00:14:28] And that was a really bad starting point for her course of treatment. It left her with no faith in the medical services and actually I think faith and I don’t mean that in a religious sense, but faith in the service providers is really, really, really important. And the idea that you are working together towards a cure really helps get to that point of being better.
[00:14:56] And I think because my daughter started on such a bad footing, it actually worked against her treatment. That was just an awful, awful experience for all of us. But particularly for my daughter.
[00:15:11] Carole Blueweiss: And your daughter has a brother, or you have a son. Tell us a little bit about your family unit.
[00:15:17] Dom Raban: My daughter’s brother Oscar is quite close in age to Issy, he’s 18 months younger. Now his needs throughout the course of that year of treatment were largely ignored. So he’s 11 at the time and 11-year-old boy, as any parent will know, only needs lots of support and lots of attention. And we were unable to give that support and attention because for very obvious reasons, our focus was on our sick daughter.
[00:15:48] And as a consequence of that, I’ve become really interested in the psychosocial needs of siblings of children going through treatment for serious illnesses. And in fact, we’re thinking very seriously about how we expand the Xploro platform to cater, not just for the needs of the sick child, but for the needs of the brothers and sisters of the sick child as well.
[00:16:12] Carole Blueweiss: That’s brilliant too, because again, it sounds so logical to acknowledge that the sibling’s not paid attention to.
[00:16:22] Dom Raban: There’s plenty of research to show that they experience a whole range of emotions from fear, guilt, anxiety that are every bit as damaging as the emotions that the sick child is going through. Whilst the information provision for sick children may be poor, information provision for the brothers and sisters of sick children is virtually non-existent.
[00:16:46] Carole Blueweiss: And who’s to say that the parents are in a position to explain it to them, if the parents even understand it themselves.
[00:16:53] Dom Raban: Yeah. Yeah.
[00:16:54] Carole Blueweiss: What strikes me too what you said about not Googling is that that’s another advantage of having something at your disposal that, what do you say certified, or that’s not the right word by the hospital.
[00:17:07] Dom Raban: Validated.
[00:17:08] Carole Blueweiss: Validated. So that if you have the app and that all the information on that app, like you could almost feel like you’re Googling, but it’s all been controlled by doctors. And just knowing that is a huge advantage as well, right? To just, to have less wrong information and you can trust what you’re reading.
[00:17:32] Dom Raban: Yeah. Yeah, it’s really important.
[00:17:35] Carole Blueweiss: I wonder, where did you get that sense that it was important to include the children? You actually even have an advisory board of children. Tell us a little bit about your philosophy.
[00:17:45] Dom Raban: Part of that philosophy comes from my professional experience. I’ve spent 30 years as a designer and central to my design thinking approach – always putting myself in the shoes of the end user. But in terms of how the major factor that’s influenced that in terms of Xploro was just watching my daughter’s experience as she went through the healthcare process.
[00:18:09] Carole Blueweiss: That makes a lot of sense. That way of looking at new either technology or just designing ideas or creating new, better environments for people that it just seems like in our world, as logical as that sounds and you make it sound so “of course!” But a lot of what is designed in this world does not ask the people that they’re designing for their opinions.
[00:18:32] Dom Raban: That’s so true. And unfortunately I’d go as far as to say the majority of what is designed is designed from a designer or commissioner first perspective.
[00:18:44] Carole Blueweiss: Is that a thing? Is that like an expression?
[00:18:48] Dom Raban: I just made it up. [laughter] But no, I think it is. I think it’s, unfortunately it’s unusual, I think, to make the end users an integral part of the design process.
[00:19:06] Carole Blueweiss: Yeah. One word to describe that is inclusivity. Right?
[00:19:10] Dom Raban: Yeah.
[00:19:10] Carole Blueweiss: To on a broad, broad way.
[00:19:12] Dom Raban: Yeah. A lot of people pay lip service to that, but it’s not fundamental to their approach.
[00:19:17] Carole Blueweiss: It just seems so logical. What leads to so much more success if you know –
[00:19:23] Dom Raban: Absolutely.
[00:19:23] Carole Blueweiss: If you can actually put yourself in someone else’s shoes and how can you do that best than by asking the people who have the shoes?
[00:19:31] Dom Raban: Yeah, yeah, yeah, totally. Totally.
[00:19:35] Carole Blueweiss: How does somebody like you do this? How do you figure this out? Tell us a little bit about your process.
[00:19:44] Dom Raban: It always starts with identifying user needs and users in this context, they’re child patients. To identify user needs, you have to talk to children. It starts with that conversation with children. What do you want? What engages you? I’ve just come back from a trip to the States where we were beginning the process of developing a new game that will sit within Xploro. And we spent three days interviewing patients, interviewing clinical staff, interviewing parents, to understand what their emotional state was through a particular treatment pathway and what their pain points were and getting ideas around what they thought might relieve them in that process. We were actually at the sedation pathway.
[00:20:33] So that’s how we start is a very detailed research phase. And then it’s what we call an ideation phase. So that’s where my team of designers and developers get together. And we assimilate all of this research and start thinking about how we could produce something that might respond to some of those needs that we’ve identified.
[00:20:58] And then that results in perhaps a storyboard, perhaps a mood board even. And then we take that back to the end users, the child patients. And we say, what do you think of this? And they give us feedback and we go back, literally back to the drawing board and take on board that feedback. And we refine those ideas and that’s an iterative process, always involving children at every step of the way.
[00:21:26] We’ve got essentially a design proposal that we’re happy with as content creators, but the end users are happy with in terms of feeling like we’ve proposed something that’s gonna be engaging and informative. And then at that point, that’s when we hand over to the developers who write the code, who build the thing.
[00:21:46] And again, we’ll test that as we go through. So we’ll start with a quite a basic prototype that children can play with. And very often they’ll identify things that aren’t working as planned or things that we thought looked good on paper, but actually when you build them as an interactive piece, don’t work so well.
[00:22:06] So we modify it and that goes on for as long as it takes for us to get to the finished product. So for example, you talked about the interactive environments in our application. We’ve got an OR, an operating room, that you can explore and find out what goes on in the operating room. We were very lucky in that we have a very close relationship with a hospital here in the UK and they let us get gowned up and go in and watch an operation.
[00:22:37] So in that sense, we were walking in the shoes of the physicians at that point, so that we could understand what that looks like from their perspective. And it’s that level of engagement that enables us to build, that has the beneficial effect that it does.
[00:22:55] Carole Blueweiss: Let’s listen in on Dom’s Zoom call, where he demonstrates Xploro.
[00:23:00] Dom Raban: The first thing we’re gonna do is customize the avatar to make it our own. So if I tap Customize My Look, I’ll try skin color. I’ll maybe put some glasses on and some hair, some clothes. And if you see the plus button down on the bottom lefthand side of the screen there, if I tap that, I can add some other things and have my avatar in a wheelchair.
[00:23:25] I can wear a face mask if I want. The next thing we’re gonna do is give the avatar a name. Let’s go with Flash. Flash Trendy Bird. There we go. There’s Flash. And if I tap the forward arrow it now says it’s time for me to enter your world. So what I’m gonna do is I’m just gonna pick up the iPad. And when I press the forward arrow, you’ll see that my camera’s been activated.
[00:23:48] And in a second, the balloon is gonna appear. And when that balloon turns green, I’m gonna tap it. And there’s Flash stood on my desk and this is just about making the avatar feel real to the child. And I can make it bigger.
[00:24:01] Female Voice: That’s so cool!
[00:24:03] Dom Raban: I’m gonna tap the green balloon now. So we’ve gone through the setup and we’re into the main body of the application. And just before we go on, and I tell you –
[00:24:13] Female Voice: He’s dancing!
[00:24:15] Dom Raban: Yeah! I’m just gonna talk you through a couple of features here on the home screen. So as I go through the demo, whenever you see that red balloon top right, that means that you can see something in augmented reality. So if I tap it now, then Flash is gonna walk out through the door, into the real world and I’ll bring it back by tapping the balloon again. And it’ll come back in.
[00:24:43] Carole Blueweiss: It’s gonna be interesting, the research that you’re doing. Of course, you have to sell it to the hospital and there’s this evidence that they need to see that it will be profitable in one way or another. So you have to have outcomes. So you have to find a way to prove it, that this is gonna benefit the hospital as well as the families. So how do you go about showing the hospitals that this is something that they want to buy?
[00:25:05] Dom Raban: Yeah, so the very first thing we did was a piece of research that’s published in the Journal of Medical Internet Research, and that was conducted with 80 children within a hospital setting. 40 of those children had access to standard healthcare information. So whatever was available in the hospital. And the other 40 had access to Xploro. And what the research team found was that those children with access to Xploro demonstrated a statistically significant reduction in procedural anxiety. As well as statistically significant increases in both patient satisfaction and knowledge about procedures.
[00:25:48] So that was great. A really thorough study. The problem is that from a hospital perspective, it’s not enough to just say that we can reduce anxiety for your patients, important as that is. Because most hospitals won’t equate that to a year-on-year cost saving. Even though we know from other research that reducing anxiety generally improves clinical outcomes.
[00:26:14] It’s still not enough to make that business case to hospitals. At the moment we’re doing a couple of studies. One is looking at whether children who are using Xploro move less when they go for an MRI scan, because they’re prepared for that procedure and therefore less anxious about it. Now, if they move less, that means that the procedure doesn’t have to be repeated. Because if you move when you’re having an MRI scan, you have to start the whole thing again. So we are looking at whether children using Xploro move less, that can be equated to a cost saving. In another study, we are looking at whether children who have access to Xploro require less pre-procedural sedation.
[00:26:55] And again, if we can demonstrate that, we can equate that to a cost saving. So those are both really important pieces for us because they advance that research from the powerful but economically not very compelling research that says we reduce anxiety into something that is economically compelling, because it can show that that reduction in anxiety then leads to cost savings through procedural efficiency.
[00:27:22] Carole Blueweiss: And how are hospitals responding to you?
[00:27:26] Dom Raban: It’s really well received by hospitals. I mean, the people on the ground in the hospital who usually get what we are doing, because it really augments what they do, are the child life specialists. So they’re the first people within a hospital to say, hey, Xploro is really gonna help our children here.
[00:27:47] Clinical teams really understand it. Obviously, the barrier is once you start getting to procurement departments and understanding where the money’s gonna come from and what the business case is gonna be and all that sort of stuff, but the healthcare professionals on the ground, the doctors, the nurses, the child life specialists, they all absolutely get what we’re doing and see the value.
[00:28:10] We have experienced some resistance from some healthcare professionals, thinking that in some way, we’re trying to replace what they’re doing. We’re absolutely not trying to do that. We’re trying to augment what they’re doing. I think it’s a reality that no matter how well resourced the hospital is, they can’t see every patient, all of the time.
[00:28:32] And especially, they can’t always see a patient at a time of need because there are way more patients than there are healthcare professionals. And so Xploro, whilst it can never replace the fantastic work that those healthcare professionals do, it can augment it and it can fill in the gaps. Part of the power of Xploro is that the most important time to reduce anxiety for young patients is before they come to a hospital.
[00:29:02] Because if you wait until the point at which they walk through those hospital doors, before you start trying to reduce their anxiety, then you’ve got a much, much harder battle. We argue that the best time for a child to access Xploro for the first time is the point at which they first hear that they’re going to a hospital.
[00:29:20] Now that might be weeks before they actually go through the hospital doors. At that point, whilst they’re in the home, the child life specialists, the social workers, the other members of the healthcare team aren’t available. They’re not around to help reduce anxiety in those children, prepare them for what’s gonna happen.
[00:29:37] They come into play once the child goes through the hospital doors, and this may be in the waiting room or going through the procedure. Where Xploro has massive benefit is in tackling that anxiety at the point where it starts to emerge. And if we can do that, then we can potentially have a child coming into hospital who already understands what’s gonna happen, is already comfortable about what’s gonna happen, and is feeling much more relaxed about the process. They may still well, they may well still have a degree of fear and uncertainty. But they’re much more receptive to the treatment that’s gonna be administered.
[00:30:17] Carole Blueweiss: Yeah. And if there was research that could be done to show the importance of one’s mindset when they’re getting treated for something, or just in general, your mindset, and we already know stress causes problems.
[00:30:30] Dom Raban: So there has been some research that has shown that the best time to give patients preparatory information for procedures is greater than seven days before the procedure.
[00:30:44] Carole Blueweiss: That’s interesting. That’s definitely not how at least the American healthcare system works.
[00:30:50] Dom Raban: Oh, that’s not unique to the American healthcare. The UK healthcare system is the same.
[00:30:56] Carole Blueweiss: And they have something called prehab, which is a form of that in a sense that, like, if you’re gonna go get a knee replacement that you get some physical therapy, let’s say, before but that’s not common practice.
[00:31:10] Dom Raban: Yeah. And that’s been virtually non-existent during the pandemic as well, because those opportunities, at least when my daughter was going through treatment, she was in some cases, able to go into the hospital prior to the treatment and see what was gonna happen. In the pandemic, those kind of things just haven’t been possible.
[00:31:33] Carole Blueweiss: Sure. So having an app would’ve solved that problem.
[00:31:36] Dom Raban: Yeah.
[00:31:37] Carole Blueweiss: How did you come up with a name?
[00:31:43] Dom Raban: It was a very, very long process. So our working title, when we were first developing the app was awful and we knew it was awful. We, it was called Patient’s Virtual Guide. We then brainstormed literally hundreds of names and tested them with children. We got it down to about a short list of about 20 that we were happy with.
[00:32:04] One of the names on that list was Xploro. And that came out to be the most popular, but the derivation of the name Xploro, it relates to how we want children to use the app. And I think about my daughter’s experience, her experience was that she was, although, you know, the healthcare information available for her was not good. What that was kind of given to her in a barrage of information that she wasn’t necessarily an appropriate time. So I think at the point of diagnosis, she was given a thick wad of leaflets and some of which were aimed at adults, some of which were aimed at children. And the whole point of Xploro is that we want the child to explore at their own pace and to find information as and when they want it.
[00:32:55] And if they decide they want to just customize an avatar or play a very simple game, they can do that. But if they want to go off and find out what an MRI scan is, or if they want to find out what causes cancer, they can also do that. But it’s very much at the child’s own pace and governed by their own worlds. That’s why we call it Xploro.
[00:33:17] Carole Blueweiss: You’re an inventor. You were inspired by your daughter to do something that is now in the world that never could have been done had you not had your horrible experience. And so I just wanna bring it back to the idea of if money were not even an object, if we weren’t even talking about selling an object or a company or an idea, if it were just purely your vision of the future and using this app for children, how do you see it playing out?
[00:33:52] Dom Raban: Our long term goal is to be a health information platform for any patient, with any condition, of any age, anywhere in the world. Because we’re talking about the information needs of children being underserved, but actually the information needs of adults are also underserved. And funnily enough, I’ve spoken to plenty of physicians who have found themselves as patients for the first time, and it’s an eyeopening experience for them.
[00:34:28] And they go into a hospital as a patient and they realize that actually information needs are not being properly served. So when I think about the longer term future for Xploro, we’ve started with children with cancer for very obvious reasons that we’ve been talking about so far. But actually, through the process of developing an app or an intervention that that is very firmly rooted in my daughter’s experience, I’ve become much, much more interested in the experience of all patients going into hospital and their information needs. So we do plan to release an adult version. It won’t be this year. It’ll be at some point in 2023 or 2024. To get to that point of any condition, we’re even now ,we’re currently developing content for new disease areas like diabetes, respiratory, and so on.
[00:35:23] Carole Blueweiss: So basically you’re trying to empower people with information and just use information along with the medical treatment to just make that medical treatment that much more effective.
[00:35:33] Dom Raban: Yeah. And central to that empowerment is A, it’s about putting the patient in control and B, it’s about and it’s gamification is an overused word, but it’s about using entertaining interactions to enable the patient to engage with that content in a way that is actually far superior. That’s probably the wrong word to use, but it is very different to reading a leaflet or a webpage. It’s much more engaging.
[00:36:08] Carole Blueweiss: Right. More integrative and uses a different part of the brain. And it just communicates to many different learning styles. And I would use the word play as a mechanism to do all the things that you’re suggesting.
[00:36:23] Dom Raban: We call that stealth learning because through play, you are learning about what’s gonna happen, but you’re not consciously learning. It’s not like reading a textbook. When I think about what we’re trying to do with Xploro, we are trying to improve the health literacy of children. And by improving the health literacy of children, we’re hoping to build a generation of patients that are able to self-manage their healthcare in the future.
[00:36:55] Carole Blueweiss: Is there anything that you’d like me to ask you that I haven’t asked you?
[00:36:59] Dom Raban: You could ask me what the immediate things in our pipeline are. And I can tell you a little bit about some of the things we’re gonna do over the course of the next year.
[00:37:07] Carole Blueweiss: Okay, what are some of the things in your pipeline?
[00:37:11] Dom Raban: At the top of this call, I’ve just returned from a trip to the States. That was very exciting because one of the hospitals that we visited, we’re actually working on a big co-development project to develop some new content around sedation, which will be really important. Sedation is a difficult thing to go through.
[00:37:30] Carole Blueweiss: Can you tell the audience what is sedation and a little bit more about that?
[00:37:35] Dom Raban: Sedation is the administering of drugs that effectively put you into a state where you don’t feel pain. But that’s very often administered through an IV. It’s very disorientating. And we’re developing some content to help children understand what happens throughout that process. So that’s really exciting. We talked about siblings earlier. We’re actively looking to develop content for siblings and some of that content will be one of the things you can do in Xploro at the moment is see your avatar in augmented reality.
[00:38:10] When we develop our new siblings content, you’ll be able to see your brothers’ and sisters’ avatars in augmented reality and share virtual hugs with them, share emojis, that sort of thing. You’ll be able to share calendars so that you always know what your brothers and sisters are up to. That’s a development that I’m really excited about because it takes us from being an application for just the sick child into a holistic application that serves the needs of the whole family.
[00:38:38] Carole Blueweiss: And this would all be included in the app or in the device?
[00:38:41] Dom Raban: Yes.
[00:38:41] Carole Blueweiss: The capabilities.
[00:38:42] Dom Raban: So essentially what happens when a hospital gives a parent an access code to Xploro, they have one code and that’s intended to be used by the child going through treatment. And the plan is that when a hospital gives the parent an access code, they’ll receive codes for all of their children.
[00:39:02] And then that means that each child can have their own instance of Xploro. And because the parent has okayed each of these children to have Xploro, we can then enable communication between each of those instances of Xploro. We can’t enable that in between one child and the child of another family because of purity and child protection issues.
[00:39:25] But within a family, we can enable that communication. And because we can enable that, that means we can do fun things like letting a avatars meet in augmented reality and that sort of thing.
[00:39:37] Carole Blueweiss: That reminds me of something else that you forgot to mention, the idea that these kids can put emojis down too, that will show their psychological or mental status. And then the parents and even doctors can also see the emotional state of these children. And the linkage to Epic. Is that correct?
[00:39:55] Dom Raban: Not just Epic, but any electronic health record system.
[00:39:59] Carole Blueweiss: So the doctors and nurses are in the loop.
[00:40:03] Dom Raban: Yeah. Yeah, exactly.
[00:40:07] Carole Blueweiss: With the parents and the children. That’s another brilliant, so many things, you’ve thought of everything. I wonder, is that it? I don’t want to cut you off. Anything else that’s in the works?
[00:40:17] Dom Raban: There are a lot of other things in the works. We’re doing some really exciting things with the augmented reality. One of the things that we’re in the very early stages of developing is the ability for the child to decorate the room they’re in virtually. We’re in early stages with that so I’m not gonna say anymore about that, but it’s, there’s some exciting stuff going on there.
[00:40:39] Carole Blueweiss: Where do people go to find out more information or to follow you, to see what other things are coming up?
[00:40:46] Dom Raban: So our website is a good first place to go. It’s desperately in need of an update. Our focus has been on developing the application rather than keeping our website up to date, I’m afraid. A rebuild of the website is in the pipeline, but our website’s a good first place to go. There’s a contact form on the website if anyone has any inquiries about Xploro, they can fill out the contact form. I’m very active on LinkedIn. I’m very happy to connect with people on LinkedIn and answer any questions they might have. So, website or LinkedIn.
[00:41:20] Carole Blueweiss: I just want to thank you so much for coming on today and talking to us about your company, about your daughter, about your family, about your thoughts, about how we can improve healthcare and how you were so inspired by your daughter and how a silver lining like this can happen. I wish you the best of luck, that all your ideas get out there in the world ’cause it’s just –
[00:41:41] Dom Raban: Thank you.
[00:41:41] Carole Blueweiss: It’s all good. It’s all positive.
[00:41:43] Dom Raban: Yeah, I think if I was gonna say one last thing as well, is that my journey is by no means unique and in doing this, I have met so many parents who have been through not necessarily a cancer treatment with their children, but they have been through a protracted serious illness with one of their children. I’ve met so many parents who have done what I’ve done, basically, which is reflect on that experience and then thought, how can I use my professional skills to do something that improves that experience for other children? Now, in my case, my professional skills are in design and software development, but I’ve met parents who use those skills to do something that improves that experience for other children, whether it be amazing fundraising or creating picture books or whatever it might be. What I’m doing is my own expression, but I’m by no means unique on that journey. There are lots and lots of parents doing amazing things.
[00:42:44] Carole Blueweiss: I’ll shout out to all you parents out there who have created new things to improve the world for the next generation or for the next people coming up. And feel free to contact me at Wisdom Shared if you want to tell your story. Thanks so much again, Dom, for coming here and sharing.
[00:43:05] Dom Raban: It’s been an absolute pleasure. Thanks.
[00:43:11] Carole Blueweiss: An exciting new development occurred since the conversation with Dom. In the next few weeks, existing stock of Xploro will be transferred to Xploro’s United States parent company, which will then own the UK company. The official name for this transaction is called a Delaware flip and Xploro will be recruiting sales, operations, and marketing roles to this United States parent company in the fall.
[00:43:34] For more information about Xploro, please go to the show notes for all links. Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.
