Trials with Maya Z

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Maya: Hello everyone and welcome again to Trials with Maya Z. Today I have here Aaron Horowitz, who I managed to meet at Scope Summit this year, uh, in Orlando. Uh, and our meeting was super interesting. He was walking around with a, like a teddy bear, like an interesting backpack with a teddy bear and I. [00:01:00] Like it probably he's from the hotel or something like that, but Def definitely didn't think that he's part of the clinical research community.

But that wasn't the case and I was thrilled a couple of actually hours later to get to our meeting and, and see that this is actually the guy that I'm supposed to meet. And then when I heard the story I was like, wow. This story should be out there, and I want everyone to know about Aaron and, and, and his story and his company and, and all the things that he's doing.

But Aaron, please introduce yourself first.

Aaron: Well, thank you so much, Maya. That's funny. I didn't know that background from Scope. Um, so thank you again for having me on. I'm Aaron Horowitz, I'm the co-founder and CEO of Empath Labs. Uh, we're a patient experience studio and we use robotics. Um, some neat game design and all sorts of data collection techniques to really engage the youngest patients, uh, kiddos in their healthcare.[00:02:00]

And for the past 11 years, we've done this work and really focused on creating these interactive companions that mirror the medical condition that the child has. We started with type one diabetes, uh, then went on to cancer and sickle cell disease anxiety, and now into clinical research. We have about, gosh, 125,000 of these, uh, interactive companions out all around the world.

And they really help kids engage with their health. And so we're so excited. Uh, you know, the scope was one of our first events in clinical research to start to apply them to clinical trials.

Maya: That's, that's awesome, Aaron. But you need, like, you know, I'm a huge fan of the Simon Sinex, principle. Start with why. So tell me why did you start exactly this, uh, uh, this company? So,

Aaron: Yeah, so this is something that's, that's really personal for me as a, as a child, I grew up with human growth hormone deficiency, so basically my body didn't produce the hormones that I needed to grow. So every single day I would [00:03:00] take an injection for about five years. And I just really remember during that time not understanding what was going on.

You know, I was a pretty young child. I was, I was around middle school aged, and I would sit in the doctor's office and my doctor would be talking directly to my parents, uh, as if I wasn't in the room. And so that's a feeling that really stuck with me, uh, as I got older. And in college I actually helped found an organization called Design for America, which is all about using design thinking, you know, working with users to design products that create a social impact.

And the first area that we focused on was type one diabetes. And as we went and as we interviewed families, Inevitably, every child would have a stuffed animal that they gave diabetes to. They would give their teddy bear injections, they would draw a little insulin pump on a piece of paper, and staple it to the fur of their teddy, right?

And they were using imaginative play, uh, the language that kids speak in to act out everything that was going on in their world that they couldn't control, that they couldn't [00:04:00] understand. So my why started from my own passion and my own experience, you know, having an illness as a child and then really observing.

How children, um, you know, once I grew up, how children are acting through their own healthcare. And so that was our light bulb moment, right? Seeing children take care of their teddy bears as if they had the same illness and really let us down this road to say, can we bring this existing behavior to life?

Um, and can we do it in a way that provides engagement, that provides comfort, and education? So, um, it's been really beautiful to see that evolve over the past, uh, 11 years.

Maya: So how does a teddy bear work? Aaron? Like, uh, every child would have a teddy bear. And you mentioned that there are like already 25,000 uh, teddy bears like that out there. So do you like it, how does it work? And we have evidence that that really impacts the way children feel.

Aaron: Yeah, absolutely. So for the products, uh, that we've created, we have, we have three, we have [00:05:00] a, a product, uh, for children, uh, with type one diabetes called Rufus The Bear. Uh, kids will check their blood sugar, feed them foods, give them insulin, that, uh, using an app, uh, with the plush. Um, this is donated to every child in the US, in Canada, in Australia, uh, who has type one diabetes.

Um, and so we have some really, uh, Incredibly engaged families that are using this kind of, that diagnosis. So, so the way it works is mirroring. We have another product called My Special Aflac Duck, uh, for children with cancer and sickle cell disease. It's a little bit more interactive. Um, so kids can give their duck a, uh, You know, a chemo port, um, and really go through the same, uh, procedures as their duck is.

So, the duck lack surprise, but really the core value of the duck is helping kids communicate how they feel. So you can tap, uh, these feeling cards to the duck's chest and the duck will vote. Uh, and now when it comes to data and impact, we have some really good [00:06:00] published research on the impact of this doc in pediatric blood and cancer.

And what we found is that the duck reduces distress for children and their parents during inpatient hospital stays. So kind of what you would expect. Um, and then the latest products, so those are our existing products. Those are both philanthropic campaigns. They're both donated to kids, um, with those conditions.

Um, but our products for children in clinical research use kind of the same mechanics and the same methodologies, so, Empowering children by giving them the control to act out all of the medical procedures that they'll experience. So in clinical research, the cool thing that we do is we customize exactly those things that they'll be acting out to what the child

experiences in a clinical trial.

Yeah, so if, if you're coming in for an MRI and your at home protocol is an injection every day, that's what your bear needs, and your app is customized to those same things and you get a really neat, uh, clinical trial patient passport that [00:07:00] you use to actually build out your protocol. So it explains what a trial, di trial is, and then you work with staff at the site and you build out, these are all stickers, a pictorial protocol.

Yeah. Um, and then every time you come into the site, you get a stamp on your passport. So this is, this is the bear, it's possible, I think this is what you saw me in my backpack. And then you get kind of this host of printed materials to actually go through and, and customize your passport to the trial itself.

Maya: Wow, Aaron, I'm, I'm looking at that and, uh, uh, not only looking, but listening to you, uh, and all the things that you're, you guys are doing is, are just incredible. I'm just thinking that they're so inspired by the reality of how people, how the children and their parents feel. But also like how can you, how they can cope, um, with let's say the, the, the differences that are coming with a clinical trial.

And we were [00:08:00] speaking before with you that there are many things that make or break a clinical trial, especially when you speak about when we speak about pediatric clinical trials. One of the things is exactly this change in the schedule of both parents and children. Um, so tell me, like, in order to create these products, Aaron, do you work closely with any parents and children?

How do you get inspired to create them and, like think of these functionalities?

Aaron: Yeah. Well, I'm so happy you asked that question because kind of the secret sauce of Empath Labs is a patient-centered, empathy-driven design process. So every single thing I showed you, all of our products are designed hand in hand with patients. Um, our teddy bear for kids with diabetes, we work with 350 families.

Um, our duck I, we were actually embedded in the Aflac Cancer Center part of Children's Healthcare of Atlanta for 18 months. And we ended up working with about a hundred families and, and 35 doctors. So every single thing we do is, is really iteratively designed with [00:09:00] children, with their parents, and with their caregivers, because that kind of triangle is the triangle of communication that we need to bridge.

And when it comes to what you were talking about right, routines, that is really what it comes down to for kids in a clinical trial, is an interruption of the routine. And so what our philosophy is, is, is that. There's so much in clinical research that children can't control, but what we do is we give them control of the things that they have choices over.

So when children build out their protocol in their passport, they can't change the protocol, but we give them the option to select different coping strategies before scary procedures like a blood draw. Or like an MRI. Kids get to select, do I want a hug for my parent? Do I wanna play on my phone? Do I wanna listen to music?

Do I wanna take deep breaths, do a drawing, whatever it is we give them control over the aspects of these, the experience that are maybe non-critical to the trial, but immensely critical to how children perceive the trial and, and how children experience, [00:10:00] uh, kind of that continuity of care throughout the clinical trials.

Maya: That's great. That's, that's awesome. Um, yeah, probably, I, I can't find all the, like, the positive words that I feel right now, but I'm, I'm working in the field of patient engagement, like patient recruitment for the past couple of years, and I can't tell you how many times I've heard, well, we need to understand better the patients.

We need to integrate the patient's voice. And now you in front of me, like you're literally telling me that you're speaking with hundreds of. PA of parents and children, also doctors to un help like to understand them. [00:11:00] And I know that you don't have like all the resources, especially not the resources of a pharma company.

So can you give us any good advice, like which are, which are these best pieces of advice? How can you engage with these people and really understand their experience? What are the lessons you've learned throughout your experience in general?

Aaron: Yeah. So I mean there, there are so, so many, I mean, the first and foremost I think when it comes to interacting with patients is, uh, finding a partner to facilitate those connections. So for us, we tend to partner with hospitals. We tend to partner with nonprofit and patient advocacy groups to help us open the door and really find the right patients to speak with.

Um, the next thing is to really come from a place of empathy. So we're all patients in some way, right? Not all of us have the experiences of a patient in a clinical trial. Not all of us, you know, might have the depth there, but we all might know how scary it is to, you know, have a blood test and be waiting for those results.

And so really to try to form [00:12:00] your questions from a place of empathy and listening. And I think one of the things and techniques we use a lot, Is the technique of the five whys, um, which you might be familiar with from other contexts, but is just to peel back the onion. You know, somebody might give you a response.

It's really important to continue asking why. Why do they feel that way? You know, why, uh, why is it so difficult to go to the site? You know, why might this procedure be scary even when it seems obvious? Because what is really easy is to project our own experiences onto what we're hearing and not truly listen to what patients are saying to understand their lived experiences.

And the next thing that we find is really valuable is to actually use prototypes, use or physical artifacts as a means of interviewing patients. So just asking a patient about their experience or what their journey is. You'll get one level of detail, but if you show them a timeline of a patient experience with movable post-it notes for the [00:13:00] different milestones, and you say, rearrange these in what your patient experience was, you'll learn far more.

Um, or if you give them a physical, uh, prop like one of our products to interact with and ask them for feedback, those can be tools to deepen the interview and to deepen the understanding even when they're very, very rough prototypes. So, Those are just three best practices. I could literally go on for hours and hours

and hours about, you know, best practices.

Maya: I can imagine, but they're so valuable. So let, let me summarize to make sure that everyone remembers them. So first, you need to find the right partner to facilitate communication with the patients. And, like parents, kids, no matter who. Second, you need to, uh, it's, it's good to have these five whys.

Like peel the onion and really make sure that you understand what's behind what people are saying. And I, by the way, can't emphasize enough how important this is for me and everything I'm doing as well. So, so thanks for reminding me that, but, and what was actually surprising to me, but thanks for the advice, is also to give [00:14:00] context.

To, to, let's say to your questions. Uh, when you, when you're asking about the patient journey, uh, allow them to have some context and then rearrange this context in, in the way they've experienced it, so that they can really give you, um, the, the reality, uh, and, and, and also to be able to, um, more interactively engage between this conversation.

So, so thank thanks for, for, for giving this advice. I wonder, like, especially thinking about this, um, five Whys technique. So I get that you're a magician with the parents and the kids and the, and the doctors. But what happens with the, with the companies, Aaron, I mean, um, now you, you just presented this steady bear for the clinical trials.

It's incredible, it's super creative. Um, but I wonder how do companies feel about this product? Do you, do you see that they're open and try, like open to experiment or what is their general reaction right now?

Aaron: Yeah, [00:15:00] so I, I would say it really goes across the spectrum. I mean, we're thrilled. Uh, we're working with an incredible pharmaceutical company right now on our first global clinical trial, and we're learning a tremendous amount about how these are being used, but it really. I think it really runs the gamut.

I mean, we all know that patient engagement budgets could, can certainly be, you know, areas that are under high scrutiny these days. And so what we found is it really depends on, you know, how the particular sponsor is structured and how they're already kind of thinking about some of this. Um, we certainly see that there, you know, the huge advantage to using this from a sponsor level.

Is retention and engagement in the trial, right? These hard metrics, we want to make sure that we're retaining a hundred percent of patients, uh, throughout the entirety of the trial by comforting them, by helping them understand, by emotionally engaging them and understanding why, um, they're, they're participating.

But just like any new product or any new technology, right? We have some early adopters and then we have some folks that are a little bit [00:16:00] skeptical. And so, you know, I think that. Uh, we're really excited to collect some data from our first few studies to build a case beyond. We should do this because intuitively right, we see this, we know the importance of comforting children, and it's the right thing to do.

Two, it's the right thing to do, and we have data to show that it saves money and that it saves time. So, a little bit of a long-winded way to say, you know, the reception is really across the board. And what we try to do is we try to bring that patient voice directly into the sponsors to say, Hey, you shouldn't do it because we say it's a good thing to do.

Listen to these patients, you know, um, and, and hear about their struggles and their challenges, and think about how this might, might help alleviate those.

Maya: And at what stage, um, do sponsors or clinical research organizations have to think about a solution like yours, Aaron, like early? How early or how late.

Aaron: It, it couldn't be one or the other. So, you know, we, we [00:17:00] can, uh, kind of do a deployment in as quickly as three months, um, you know, in a, in a really, really rapid, um, rapid turnaround. But I would always encourage sponsors and CROs to think about the patient's voice as early as possible. And, you know, hopefully, tools like this or other type of patient-focused tools can come out of that process, you know, based on, on the needs of the study.

Certainly, the earlier that we are involved, the more interactivity we can build in and the more integration into the study, whether there's a specific type of education that we might wanna build into our patient passports or build into our app, right? Um, we get really excited about the coming in as, as early as possible so that we can really build out the highest fidelity experience.

Maya: And am I right in understanding that you can also help bring this patient voice if you're, if. Let's say sponsors are to engage with you as early as possible. Like let's say even when they're planning their trials, they can also get, get engaged with you and understand better. Uh, like through with your [00:18:00] help, how do people think about, how do they feel, feel about like the, like the whole journey of the clinical trial and then you can co-develop actually the tools to empower retention.

Is that correct?

Aaron: That's, that's absolutely correct. And it's been really fascinating. You know, as we talk to parents and families who have participated in clinical research, we certainly have this trove of data and understanding, you know, from our past products, from our past experience. Um, But, but these are, these are really different, right?

The challenges that people are facing in, in clinical research, it's really different than, you know, chronic care. And, for many, listening to this podcast, this is, this sounds probably really, really obvious to you. Um, but it, I, I, I think there's just this wealth of opportunity that we have right now in clinical research to improve, to enhance, um, to think really differently about, How patients are engaging in these trials because, at the end of the day, we couldn't do a trial right.

Without the patients. So I, it's so important that [00:19:00] we make sure that, that they're, they're, I, I, I pause to say enjoying their experience. I, I mean, hopefully, but that, that they're comforted as, as they go

Maya: Yes,

as much as possible. You're absolutely right. This is, that this is so important to make sure that they can, um, if possible, enjoy the whole journey, benefit from the whole journey, and just feel a little bit more comfortable than, than what they would usually, uh, even better if, if it's better than their standard of care, because then also be advocates for these clinical trials.

We sometimes forget that. These patients, uh, part of the clinical trials, and not only the patients themselves but like in the case of pediatric clinical trials, the kids and their parents, they're the next advocate for clinical research. They're the ones to go and advise other people to explore that as an option.

And that will simulate also patient recruitment and retention in one way or another. So, so you're absolutely right. And Aaron, I'm [00:20:00] just curious, um, like at the end of this, the episode, Tell me, are you planning, like what's the next thing after the teddy bear for the clinical trials? Like give us like what's the secret?

What's the next thing?

Aaron: Oh man. So we're cooking off a lot of things in the lab. I mean, the next most immediate thing that we're developing is a very similar solution for teens. Uh, we really want to have, you know, our product be able to carry through, you know, a zero to 18 study. And so we're looking really critically right now out here in the rest of the office, we have all sorts of cool prototypes that we're actually gonna be testing, uh, in just a few weeks with a group of teams to get their input.

And then beyond that, we're really looking at different methods of data collection. You know, I showed our duck product earlier, and for those that are listening, we have these physical discs that have different emojis that children will tap to the Duck's chest and the Duck Li moat. And we've seen this as an incredibly powerful tool for children with cancer and sickle cell disease to actually talk to their doctors about how they're feeling.

So [00:21:00] we are churning through some interesting methods. You know, obviously, there's, there are all of these ePRO for parents, but we're looking at how we can learn about the child's patient experience and how we can learn more from kids.

Maya: Wow, that's incredible. I, I can't wait to see that as well. And Erin, congratulations on, all the things that you've achieved and all this creativity. I have absolutely no words. I just hope that there are more people like you in all industries, no matter like clinical research or other industries because we definitely need that.

And I just wish you luck. Thank you so much for spending your time with me.

Aaron: Thank you. I'm really honored and really appreciate the opportunity to share with your audience.