I recently sat down with Saul Marques from the Outcomes Rocket podcast to tell the story how my 5-year-old daughter and I built a robotic exoskeleton for her paralyzed arm. After learning there were no treatments we could afford, and only a 2% chance of recovery, we decided to leverage Open Social Innovation to build our own solution. A year later, leveraging the collective intelligence of experts around the world we built an exoskeleton, 100X cheaper, 10X lighter, and one that enabled her motor neurons to repair themselves! Today she can move, unassisted and has recovered 60% of her strength! This is our story:

 

Transcript

[00:00:00] Saul Marquez

Building a robotic exoskeleton arm for his daughter, who recently became paralyzed, is something that has been the core of his focus and exoskeleton that turned out to be a hundred times cheaper, 10 times lighter, and one that enabled her motor neurons to repair themselves. They did this without any previous experience leveraging the collective intelligence of experts around the world who gave over their time and skills to help. You could find more information on that in the information we're gonna give you later in the episode. But a little more on Bodo. He loves working on audacious projects that tackle hard problems and are for the greater good. So it's a privilege to have him here today with us. Bodo with that, I want to welcome you and give you an opportunity to share a little bit about yourself that I haven't touched. Welcome.

[00:00:47] Bodo Hoenen

Thank you. Thank you so much for inviting me. And that bio sounds a little too good. You're doing some good stuff. So I've been working on open innovation projects for a number of years, about a decade, maybe, maybe even 15 years. And working on solving problems in a way that requires me to reach out to experts from a variety of different fields to help me sell particular parts of the challenge that I'm trying to work on. And this started quite naturally or evolved quite, quite, quite organically. And it's now morphed into a process that I take on and that my company takes on to try and solve the Cretaceous problems that honestly, we don't think of them as as being realistically solvable, but we try to tell it tackle these big audacious challenges because it's fun and it's interesting. And if we happen to to succeed, then then that's awesome. But if we don't, then we at least we have some some fun trying to solve those problems. And then I've I've had the great fortune of of know also paying the bills by doing this work. I initially spent the first 10 years doing this as as a volunteer. But more and more, this way of solving problems has become pretty valuable. And now I can start paying the bills doing during this time type of stuff.

[00:02:07] Saul Marquez

Well, I think that's awesome. And again, you know, just kind of thinking through typical cycles to profitability. It started as a social good project and it still is. And now it's getting funded so and helping people. So a testament that you stay with something long enough, it'll eventually pay off so long as you're adding value. And the work that Bodo is doing here is certainly adding value. The things that come to mind here, Bodo, are this idea of the mastermind right, putting more than one head together to achieve a greater good and just this hyper focus on the niche that you're you're focused on here with health care? I'm fascinated by it. I know there's other other areas that you guys are tackling, but the core of it was health care to begin with. So curious from your end photo and in your experience and the time that you've been doing this, we obviously know. You've got em. So what's a hot topic today that needs to be on health leaders minds and how can you and your organization help them solve it?

[00:03:07] Bodo Hoenen

I'm speaking about this as a parent who had a child go through some really terrible illness. So she was completely healthy. The morning I left for work, she had just complained about her, her left arm feeling a little numb and tingling and.

[00:03:26] Saul Marquez

How was she when this happened?

[00:03:27] Bodo Hoenen

She was about five years old and I left for work. I told her, you know, don't worry, you've probably slept on it or you bumped it during the night. Don't worry. Things that could be okay. And I didn't think anything of it and left to work. And five hours later, she was in the FDIC and her body was almost completely paralyzed. She had lost at that stage already 80 percent of movement. She couldn't stand, can sit. She struggled to breathe. Her left arm was completely paralyzed. But to answer the question is really in that circumstance, speaking to the doctors and going through that process. What struck me struck me really profoundly is how we were expected to be passive participants in the health care story that we were expected to do as as we were told and follow the instructions as we were told. And we didn't really have any input. And this kind of reminded me and it was it was so vivid in my mind because it reminded me of exactly on about a project that I was working on at that time. It was an educational project where we were trying to devise a technological solution to the huge educational crisis, where there's a two in 50 million kids who can't go to school and don't have good education because they are treated like passive students. They expected to sit down. You shut up and do as the teacher tells you. This is how you should think. This is what you should do. And I recalled that feeling. That's the type of educational experience I went through as a kid. And I recalled all those feelings sitting in the hospital, hearing the doctor tell me one thing, but unknown to the doctor. I did research my daughter and I were doing research, and we actually reached out to a number of parents who had kids with a similar condition. So our doctors were saying, yeah, don't worry, she's young enough. She's gonna bounce back. Everything's gonna be okay. All we have to do is, oh, teen NPT and things will be fine. So that was that was the advice from the doctors and the advice from the parents. All the while, the discussions we had with the parents were that most kids were still on respirators, most of them and two years on, we're still in hospitals and on respirators and their limbs were still paralyzed. Only two of the kids out of 100 had had any significant recovery. And so there was this huge disconnect between what the doctors were telling us and what the parents were telling us. And it really brought back those feelings of as patients. And I and now I experience this quite often is that we're almost expecting our patients to be passive participants as opposed to active participants. And so to answer your question, I think that is probably the the biggest advice I could give to your audience is somehow find a way to actively engage the patient in the process.

[00:06:14] Saul Marquez

I think it's a great call out Bhutto. And from a practicing physician or a an executive running a hospital to an industry leader were all patients or somebody that we love as a patient. And so that call out that you're making is be proactive as a patient and also as a care giver and a provider. Be more inclusive. Try to get your patients to be more involved.

[00:06:41] Bodo Hoenen

Right?. Absolutely.

[00:06:42] Saul Marquez

Love it. And, you know, it's a great call out. So you guys reached out proactively to other families today. Luckily, there's a lot of ways that we could do that. There's social groups like we had Dan Hinmon from the Mayo Clinic talking to us about Facebook groups for patients. There's online forums. There's a lot of ways we could do this. Definitely a great call out by Bodo for everybody listening. Give us an example of how that led to better results for you and your daughter by being proactive.

[00:07:12] Bodo Hoenen

So we we were in the hospital. Lorelai and I were thinking about, you know, researching ways in which other paralyzed people are being treated. And we found some examples of exoskeletons being used to help paralyzed people regain movement. And we thought, let's reach out to these research projects and these people doing this and let's see if they can help us or whatever the case may be. And we reached out and they weren't open. They weren't open in sharing what they were doing and they were helping adult patients as opposed to kids. And so we decided, let's try build one ourselves. We don't know how to do it, but.

[00:07:50] Saul Marquez

That's crazy.

[00:07:51] Bodo Hoenen

I'm used to working in that environment. I still don't know how to do it. But we managed to get hundreds of experts from around the world to help us.

[00:08:00] Saul Marquez

How did you do that? How did you get hundreds of experts from around the world?

[00:08:04] Bodo Hoenen

So the way I tackle these problems is to break the challenges down into bite sized components first. So my daughter and I first, we sketched out this really, really rudimentary design of an exoskeleton. We wanted to 3D print some arm braces. We wanted to use some type of motor. A pulley has an external muscle and we wanted to have some sensors built into the sleeve to try and pick up the very faint signals still going to her muscles and to use those as control signals for the access codes. So even though the signal's going to muscles aren't strong enough to actually move a muscle, we still wanted to try and pick up those signals so that she continually sends the signals to her muscle even though it's paralyzed or it doesn't move. We wanted to to force the brain to continually send signals that way so that she doesn't forget. And in the hope that it would help the rehabilitation like we saw in the examples we researched. And so we broke down this project into those components. And so the first problem is we don't know how to 3D prints. Right. So let us find a community that can help us 3D print. We did that and then we we didn't know how to. And then we realized that we needed accurate measurements of Laurel's arm. And then we didn't know how to do a 3D scan of her arm. So we reached out to communities doing 3D scans to help us with that.

[00:09:21] Saul Marquez

And so reaching out nationally or globally?

[00:09:24] Bodo Hoenen

This was globally. So we just did a Google search, unlike 3D printing communities. We found them on Facebook and Twitter and linked and then in Google Plus and and all of these different weird places.

[00:09:37] Saul Marquez

But it kind of reminds me of how Elon Musk just decided to build a rocket like he had no idea. Yeah, he is smart, right. But he had no idea how to build a rocket. But he just kind of did what you guys are doing anyway, just not to take you off track. But it's like inspiring. Go ahead. Continue with your story. I'm listening.

[00:09:54] Bodo Hoenen

What I find this fascinating is how much how much cognitive surplus there is. And experts all around the world and and most of these experts are stuck doing work that isn't really meaningful to them. And so when you proposed to them, hey, listen, you know, we're trying to build this exoskeleton and we have to completely, openly. Can you help us? You'd be surprised how quickly people are saying here how you know. Let me jump out of my work for six hours and help these people. And I think the key is that everything we do is then shared openly, which is wonderful, because then other people can take it further. But this was the process we used to to try and solve these challenges. And again, we didn't have the expectation that we'd actually get it done. But this was our process. And what was really fun and interesting and exciting was for four or five weeks after coming home from the hospital, we started to really enjoy the process. As soon as Lorelai came home from school, we used to drop a bags. We wouldn't do homework, which we can care about doing homework. But we we immediately started working on this project. That's awesome. And we used to have Skype phone calls with crazy people from around the world. And some of them these people would teach us how to wire and what we know or how to hook up the electrodes or how to code a piece of software or all of these different things. And my five year old daughter and my my three year old son used to get involved and my wife was sewing for us. And all of these things, we had so much fun, which was I also think, part of the healing process. She didn't accept her own condition. She was hopeful that that something would happen. She was working actively on solving this challenge and she was actively sending signals to her arm continually since since day one. And all of this, I think, helped her in the end.

[00:11:41] Saul Marquez

What a neat journey. And definitely. Appreciate you sharing that. The ins and outs and man. And be like this guy as a cool dad. I don't have to do my homework. This is awesome. I get that. I get to talk to people from all over the world. The cool stuff that actually does make me smarter and helps me at the same time in the world. Love your story, Bodo. Definitely appreciate you sharing it. As you were working on this problem. Share with us a mistake or a setback that you guys made that made you guys better or would you learn from it?

[00:12:13] Bodo Hoenen

I mean, there were tons of things we got wrong and we had to tweak. Initially, the 3D printing was completely. We tried to print out the brace to fit around perfectly and then realized, well, her arm is going to continually change shape and grow and all these things. And so we we redesigned it using peel a plastic which can be molded if you just apply some heat. And so we we redesigned it. And it turns out to be a lot a lot easier to do, a lot easier to print, a lot easier to mold. And then we had a big challenge with I guess the the biggest challenge was trying to pick up signals from her muscles. So the traditional approach was using, you know, standard muscle sensor and it would filter out the. It would normalize the signal and filter out some of the noise and then you could apply a threshold to that signal and so it sends you pull a muscle, it reaches a threshold and you could then use that to control the excess. And that whole process is almost the traditional way that a lot of the the robotic arms use for amputees. They're working with healthy muscles. And so the signal is pretty strong. But that process, that way of doing things really didn't work for us. I mean, it worked for me and we tested out a mile. It worked really well. But with Lorelai, I don't know the accurate numbers, but it's like she only had 2 percent of the signal going to a muscle. And somehow we needed to pick up that really faint signal and all the noise that her body generates.

And we just we couldn't figure it out. And then Lorelai actually gave me the idea of using machine learning. We were we were stuck in in Penn Station in New York trying to get home. And our train was was canceled. And up until that time, I was telling Lorelai that the signal going to muscles like a train. The train is trying to go down the train track, but the train track is broken and can't get all the way to the muscle. And so with that analogy in mind, she looks up up at the train board and says "D, you know, all these other trains are still running. What can we look at all of these other ways? Maybe we can find a different way home." And and it was a moment like that that inspired me to think, hey, you know, let's look at all the signal. Let's trying to find a new pathway and let's use machine learning and pattern recognition. And then again, we didn't know what to do and we still don't know what to do. We still don't know how it's all done behind the scenes. But we reached out to machine learning experts and pattern recognition experts, and it was through their advice and guidance that we managed to get this way of training a a pattern recognition algorithm to pick up those very faint signals and use those as control signals for the access codes. And that was that was a really tough challenge. We need to try to become.

[00:14:58] Saul Marquez

Wow. So, you know, I love the analogy of the train and being open to new pathways. This idea focus of the cognitive surplus, you know, engaging people that that don't feel fulfilled necessarily with projects that could be rewarding some great ideas that if you dig really deep, you could find major application to whatever you're working on to help improve outcomes and also business success within healthcare. So truly appreciate these learnings, Bodo. How about one of your proudest moments that you've experienced to date in your business or in your journey with your daughter?

[00:15:37] Bodo Hoenen

Proudest moment. This was about a year after we started this project and my wife and I were in the kitchen. We're busy making food, I think, and Lorelai comes into the kitchen and she's not wearing her own brace. And she she looks up at us and she says, Hey, mom and dad, guess what I can do? And she she started to pick up her arm and use her arm without the use of the exoskeleton. And she was my. She had started to regain that that movement. And it was it was so sudden. That was the you know, looking at her face, she was smiling. My wife and I were crying. But it was seeing that seeing the face of a child who's overcome her own challenge by doing something amazing, by not listening to to the generic advice, but by actually breaking some rules along the way. By not doing homework and by way, by working on something important like this, seeing that face of this was the proudest moment of my life.

[00:16:45] Saul Marquez

Wow. Yeah. Definitely. You took you took us there, Bodo and I definitely felt like I was seeing your daughter move her arm. It was. It was a proud moment. And and again, folks don't take generic advice and don't give generic advice. If you could avoid it. This is a great call out. Lots of words of Wisdom by Bodo. An amazing story. How's your daughter doing today?

[00:17:10] Bodo Hoenen

She's awesome. She's just a regular kid. Her arm is doing better. It's plateaued now. So it's it's got about I don't know the accurate numbers, but I guess about 40 percent of the strength back.

[00:17:22] Saul Marquez

Wonderful.

[00:17:23] Bodo Hoenen

Her shoulder is still paralyzed. We haven't been able to train that. We haven't been able to build something from the shoulder. It's orders of magnitude more complex, but we're pushing forward slowly. But she's doing great. She's she's having fun.

[00:17:37] Saul Marquez

That's awesome. Well, for you folks listening and maybe you got inspired by this story. Maybe you work on shoulder there. Now, somebody that does will have an opportunity to reach out to Bodo and his daughter here after the lightning round. You'll provide the best way to contact them and maybe some collaboration can arise there. What would you say? An exciting project you're working on today?

[00:18:00] Bodo Hoenen

One of the most exciting projects I'm working on is the is a project called Open Social Innovation, which takes this process that I've been developing now over the last 10, 15 years and and expands that globally. And it's about the way I work on projects as I like I described I break it down into these components, which I call bricks, you know, a component for 3D printing, a component for all of these different things and working on all these projects. A lot of these components, they they don't work, but some of them do. And all of them, we restructure as bricks. Right. And so when I start a new project, I could look at all these other bricks that I've developed and see, OK, maybe I can clip some of these other bricks together and give myself headstart. Right. So I can clip in a business model brick and I can clip a marketing strategybrick to a new, new whatever, you know.

[00:18:51] Saul Marquez

Yeah, for sure. And these bricks, they consists of social networks, processes, procedures, things like that.

[00:18:58] Bodo Hoenen

Yeah, absolutely. Anything that you would think of doing within a regular business. But we applying this to education, much like the project that my daughter was working on, her exoskeleton really provided her a superb education. We working with a lot of challenge based educational models where students, instead of sitting in classrooms listening to lectures, they would actually work on real projects. So while they work on these real world projects, they would work within this framework. Building these bricks and all of these bricks are openly available to every other students. And so very quickly, an open creative commons license, library of bricks that students are we're working on coming increasingly high of high quality, being able to be leveraged by students around the world. And hopefully we will get to a point where the quality can compete with some of the most well funded organizations out there. And bricks can solve some of our biggest challenges.

[00:19:56] Saul Marquez

I love it. So, folks, if you're curious about this, check out the work that Bodo and his team are up to it www.dev4x.com. Check them out there. Photo. Let's get into the lightning round. Are you ready?

[00:20:14] Bodo Hoenen

Am ready. Yeah.

[00:20:15] Saul Marquez

All right. What's the best way to improve health care outcomes?

[00:20:18] Bodo Hoenen

I think echoing what I said earlier is actively engaged. The patients try to help them understand that, that they have an active role. What really works for us is finding examples of what other people are doing and how they are struggling and what what they are doing. And I hope that if you have patients with something similar to what Lorelai and I have, we've got a wiki which shows us everyone what we did and how we did it and all the problems we faced and how they can build their own exoskeleton. I hope that there are examples like that you could show patients and encourage them to get actively involved in their own healthcare. I think that's probably the for me that that's probably the biggest advice I can give.

[00:21:00] Saul Marquez

For sure. And what's the biggest mistake or pitfall to avoid?

[00:21:05] Bodo Hoenen

So what's interesting about the project I worked on is it's almost none of the the experts we've reached out to were medically qualified people.

[00:21:13] Saul Marquez

A lot of engineers.

[00:21:14] Bodo Hoenen

Well, yeah, a lot of engineers, a lot of creatives, a lot of designers, a lot of artists. There's a huge pool of talent out there. You don't need to if you have a problem with signal processing, you know, reach out to signal processing experts like people that work for the city project, you know, trying to decipher signals from outer space or we reached out to Google deep mind folks that would that we're training the pattern recognition algorithm to detect cat pictures and videos from the Internet. You know, these are experts in their own right and can be used that their expertise can be applied to to anything, including medical situations or medical challenges.

[00:21:49] Saul Marquez

How do you stay relevant despite constant change?

[00:21:52] Bodo Hoenen

It's crazy. It's it's like the rate of information being generated. The rate of knowledge being generated is so quick that as a human, we never going to know everything. We're never going to know everything new within our fields. And that problem is going to become increasingly brought to the fore. And I think you're already experienced in medical science that if you're treating a new condition, you probably have to read through a thousand new publications on that or papers on that before you really understand it. And by the time you've read those thousands, there's probably 10000 more to read. And so this is an increasingly big challenge. And I don't have a clear answer to that. But the way I stay relevant, at least in my experience, is do what you can, read what you can, but realize that you're not the expert and therefore leverage the expertise around you to fill in your own gaps, but be humble and realize that your knowledge of the particular situation is never going to increase. It's only going decrease because the amount of knowledge within that subject is is increasing far quicker than you can ever learn.

[00:22:57] Saul Marquez

What book would you recommend to the listeners?

[00:22:59] Bodo Hoenen

My favorite book. I knew you were going to answer that question, and I battled to to answer that because it changes so often. And I guess I've read these these two books over the last couple of weeks. One called Sapiens, which is a history of humanity. Really fascinating book about how cultures change now. Humans have evolved and changed culturally. And then there's also one called Super Intelligence. It's about artificial intelligence. I think I tend to never know what book to read. And the only way I I actually end up buying books is is to find someone I admire and then see what books they recommend. And just because they recommend it, I'll tend to read it.

[00:23:49] Saul Marquez

Love it. Now get some great recommendations there. Bodo and folks, if you want to check out the full transcript of today's interview. Please go to outcomesrocket.health in the search bar type in Bodo B o d o or also type in dev4X. You'll find all the show notes there, including the short notes. So you could get a summary of what we discussed today. But before we conclude, I'd love if you could just share a closing thought and then the best place for the listeners could reach out to you to collaborate.

[00:24:19] Bodo Hoenen

Yeah, I think closing thoughts is definitely engage your patients. My doctors were absolutely fascinating people, lovely people. I love them to bits, but actively engage us. We're ready to take on these challenges ourselves as well. And yeah, you can reach me through the website: Dev4x.com or my email

[00:24:44] Saul Marquez

Outstanding. Bodo. Hey, this has really been a fun conversation. Inspiring. You've left this with some really great takeaways and we thank you for that and appreciate you spending time with us.

[00:24:56] Bodo Hoenen

Thank you.

 

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