Amy Li Stage IV Cancer Survivor on Health Innovation
Episode 13214th October 2019 • This Week Health: Conference • This Week Health
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This transcription is provided by artificial intelligence. We believe in technology but understand that even the smartest robots can sometimes get speech recognition wrong.

 Welcome to this Week in Health, it influence where we discuss the influence of technology on health with the people who are making it happen. My name is Bill Russell. We're covering healthcare, CIO, and creator of this week in Health. it a set of podcasts and videos dedicated to developing the next generation of health IT leaders.

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If you are going to be there, please stop by. I'd love to see you. Sometimes patients make the best innovators within healthcare. I caught up with Amy Lee, the founder of Dance for Healing at the Health 2.0 conference, and Amy is a cancer survivor, stage four cancer, and she set out after her bout with cancer to come up with ways to help people in a similar or the same situation as her It.

It was just a fascinating conversation. I learned a ton. I hope you get as much out of it as I did and hope you enjoy. Another session from Health 2.0. We are here with why, why don't you introduce yourself and what, what you're doing. Yeah. My name's Amy Lee. Um, I'm founder of Dance for Healing and also stage four.org.

Um, stage four is spelled as Stage IV because in medical field that's how you categorize cancer. And I am a stage four cancer survivor. I'm here at Help 2.0. Um, this time not speaking like I used to. To, but interviewing people for my upcoming book, stage four Really. So the book, what's the title of the book?

Stage four, um, uh, A Cancer Ous, um, design for Mindful Transformation. Wow. So it takes a look at, so give us an idea of what it looks at. What are you, what are you gonna do with your book? So the book really is . Um, we have a mission to have one, meaning life, save from cancer and other life difficulties, do personal stories, um, public education, um, design thinking, which is my background and technology innovation.

Wow. So as we were talking earlier, you're, you're doing a lot of things , so, um, yeah, yeah. Bye . So give us an idea of, of your journey. I mean, you're a cancer survivor, so where, uh, uh, is that where this whole journey sort of started for you in terms of healthcare and, and really having a passion? Well, I always had an interest, um, in healthcare, but more from like a futurist perspective.

So I'm outside of this. I'm also on the board of International Lab Profit called Humanity Plus, and I've been one of the board directors . For the last 10 years now. Um, and it's one of the oldest features organization, non-profit, that, um, focus on using technology to enhance human capacity. So we have like a huge track of longevity, life extension, uh, another track on AI robotics.

Um, one of our, um, . Um, uh, board of directors is actually the creative of Sophia Robot, who was the first robot guy. There's, you know, citizenship from Saudi Arabia. Anyway, it's not the best robot according to him, but you know, it, it probably got the most press as a robot. Um, and so yeah, I certainly do have a long-term interest.

Um, but it was more like, this is my volunteer work. Um, and then until I was hit by stage four cancer at a much younger age that, you know, in a lot of patients that I completely not expecting, and then consider the fact that I actually run a marathon. That year before cancer, within one year I was fighting stage four cancer.

Yeah. So cancer doesn't really care if you're healthy or not healthy. It just sort of all just sort of comes. Well, I don't think it's not care. I think what I learned from that journey is actually, uh, one of the chapter in my books post Stress Skills. And what I learned is. When I look back, when I finally was sick, when I look back in that one year, um, there was so much stress that I was dealing with in my life, both personally and professionally, uh, that I never experienced before.

Really did break my body down. That's interesting. You're the second cancer survivor in the last week I've talked to that talked about the year before they got cancer was an extremely stressful year. Yes. But outside of that, they were fairly healthy. That's yeah. Yeah. And does the research back that up?

I'm curious. Yeah, actually. Um, so what's interesting is also when I was diagnosed with stage four cancer, I was actually part of the innovation program in NASA called Senior University. Um, I got four scholarship, which moved me from LA to the Bay Area. And my mom say, coming up to study in NASA saved my life 'cause I have wrong diagnosis.

And two of the best hospital in la. And then because the fact that I move up here, um, I have to change the doctors and that empower the correct diagnosis came out and which is one of the chapter in my book is actually like, you know, regarding these kind of, you know, healthcare, you know, like problems where like misdiagnosis wrong diagnosis and patient and family challenges.

is was six years ago? This is:

Um, so Matthew Hor, um, you know, who's the founder of Health 2.0, has been, uh, a great friend and a supporter. Um, we got connected. I forgot how , probably by mutual friends. Um, and then, then I was invited here, you know, to speak as a patient advocate. Um, I also spoke as a innovation entrepreneur. Um, so outside of

Writing this book. Um, in the last couple years, I'm actually also working, uh, on a company called Dance for Healing, uh, which is using technology and behavior design to empower those who are stuck at home often like myself. Whether it is. Cancer or other chronic conditions or aging, that able to enjoy music and dance, art for healthy behavior change with accountable partner.

So from a patient advocate standpoint, what, what do you tell patients when they are first diagnosed with cancer? How, how do they navigate their health? How, I mean, what, what do you. What would your, what would your advice be, or what would your wisdom be to them? So there was a third act in my book is all about, um, the personal breakthrough that I actually learned.

I didn't wanna admit it, but I was very lost after cancer. Um, one thing I think really make a huge . Difference for me is I was very lucky that I, when I was diagnosed, I was actually part of this, uh, entrepreneur program in nas and we're talking about 80 students from 36 countries with, you know, 20 faculties.

So we are like families and these people, um, INTA become the supporters. You know, like when I went to my first oncologist visit, we have four girls, . So it was funny myself, um, my classmate from uk, uh, who volunteered to take notes, another classmate who's a child cancer survivor, um, one with us, and then we had our TA from the medicine track, uh, who's a doctor from Poland.

Four ladies show up in the doctor's office that kind of confuse him. . Yeah. Like he was like, who are these people? Yeah. Wow. That's fantastic. So, um, that's, that's, that's, that really is fantastic to have that kind of group of people Yeah. Come alongside you and, um, and I would imagine that was pretty, uh, helpful for you.

To, I mean, 'cause you're not gonna take good notes in the meeting. Yeah. And you're not gonna, I mean, yeah. So, yeah, I mean, was there, I mean, was that sort of thought through by you or is it just they they offered, what, what's really interesting is, um, for the first couple weeks before my cancer diagnosis came out, 'cause I had a wrong diagnosis, like I said, from to the best foot hospital in la and, um, I was hiding my illness.

From everyone. The only people who know was a few faculty that I have to communicate with. Um, and then a couple of my classmate who was my driver to take me into my doctor appointments. Um, and then I was hiding my illness from the whole class. When the cancer diagnosis finally came out, um, the leadership director was waiting for me outside our customer in nasa.

Wow. And then right before that my doctor, my ENT doctor, 'cause I have nasopharyngeal cancer that metastasized to cranial nerve. And when I went to receive the diagnosis in the beginning we thought maybe it was stage two, but then it was actually stage four because the delay of the diagnosis, um, what he told me really.

Resonate with me. All he said it was just rely on your community. This is too big for you to carry on by yourself. And when I went back to nasa, when this leadership director sent me down and asked me, we wanna respect your privacy, we also wanna support you. Are you comfortable with us sharing with your classmates?

Um, and I say exactly the same sentence the doctor told me, this is too big for me to carry myself. Please feel free to share, and that's when all the supports supporting me, and this will be my first advice for any patient. Don't hide your units. 'cause you, I mean, human strength and mindset, it's incredibly different.

Uh, in terms of like your ability to handle any sort of difficult life challenges, um, I feel I was. All the way down to the ground, and I was being picked up by all these amazing human beings that give me kindness and love. Just couple, um, weeks ago, I actually went back to our 10 year anniversary at senior university and I did an interview with our CEO Ronne.

I know we recall some of those moments, you know? Yeah. Like it was really, um, yeah. Just like, you know, my heart, you know, was really connected to this community. And then just consider, you know, the fact that I have a small family, you know, my sister's a single mom, you know, my dad also passed away from lung cancer while back, and my sister had two, you know, uh, at the time was still like nine, like 10 year old child.

You know, it would have been very difficult for us to handle my illness and LA in trying to figure out. Transportation and then where to go, you know, see the doctor and everything. Yeah. Uh, dance. Dance for healing. Yes. Uh, tell us about that. Yeah, so Dance For Healing is an AI powered telehealth platform to empower patients.

Um. Specifically more for chronic patients, uh, who are stuck at home often due to, you know, or whether it's compromised immune system that is simply not safe for them to go to a gym or, um, you know, they have mobility issues that, you know, isolation, loneliness. This is one of the biggest challenges. Um, and I just talk about mindset.

So in this kind of loneliness setting, it's very easy to fall into depression and stress actually triggers a master, uh, gene for metastasized. And we all know that's how a patient got killed, right? Um, and so the initial inspiration is how do I reduce anxiety and depressions in the population who's stuck at home often?

Uh, we thought about music, you know, , it was kind of funny, like the idea origin generated while I was in nasa. And so I was very nerdy. I was. We had a huge truck in nanotechnology. So I was looking into biosensor that fits into my jewelry, able to monitor my stress level. And we sort of stuck like, I can't tell you, like on your face, like, Hey Bill, you're stressed, you're not gonna react to it.

Well just assume I'm stressed, but go ahead. Yeah, exactly right. And then we sort of stuck and then we run to this musician, musician say, oh, why don't you just play some music for 'em? Um, and so that's kind of the original idea was like nano biosensor managing stress. And use music as, uh, you know, an intervention.

Right. And then, um, couple, a year after I finished, uh, the treatment, I was a Stanford, um, design for dance conference by BJ Fox, who's this, um, big behavior design expert, um, who had this. Incredible innovation. I able to see the innovation before it happened. So he actually started the mobile health conference before mobile was adapting into healthcare.

And so for him, dance is a perfect mechanism for behavior change. Because you have an automatic behavior trigger music that's easy to make your move. You know, it's um, there's community support, there's human interaction, there's the physical body. Um, for exercise, there's the emotion uplifting through the music, which is one of the most ancient healing modalities.

Um, and I was just at ask by all the speaker who talk about both their, um, medical research behind creative arts. Celebr, um, as well as like, you know, individual, um, uh, you know, people who started like these kind of foundation for the creative arts since they were a child, and then how much, uh, changes they're able to see for the people they serve.

And I was amazed by that and I was like. Wow. Like I didn't think about dance, I just thought about music. How about dance? And I love dance. And so that's kind of how I get started. Um, and then there's a ity moment if you believe in serendipity, in that evening I came back. Um, there's actually, um, . A random text in the middle of the night when I first time think about adding dancing into my original project idea.

Uh, it was, uh, one of my ex Yahoo sent me a text, like, something to Inspire you, and it was a TED Talk. Guess what that title is? , uh, the name of your, uh, organization. The title of the TED Talk is called Fighting Cancer with Dance Fighting Kids. Wow. . So that works. Yeah. So randomly, you know, constantly or serendipity, whatever it is.

Yeah. You know, two weeks later I went to a hackathon and that's how I, you know, created the first version of the mockup. At a hackathon. At a hackathon, yes. Wow. Yeah. And then the next hackathon, we won the second prize in Google, uh, start weekend . So where are you at now? I mean, yeah, I, I mean, where's the organization?

Where's the product at? Sure. So, um, as you know, um, healthcare can be very slow. When I first started, I just getting the momentum. Really quickly. Um, I think it was just because I was so excited about it and I got everybody excited about it. So I launched the program without any money, um, by convinced, uh, 20 dance teacher to volunteer time to teach for patients.

And then we were invited to be part of the Stanford, um, healthcare support group. Um, and then, so we got a lot of data. Um, it's funny. Stanford Healthcare Support Group, the patient support group have 60 program. My company was one of the oldie technology company at that, at the huge catalog, . Oh, really? Yeah.

s is talking about, you know,:

But what about the population of stuck at home? They have no access to that. Right. Um, and. So what we also dealing with is the difficulty of innovation. Um, and so the program, despite the fact we gather a lot of data, uh, and then when it started to transform into more like a long-term program, we had a contract, but a directly retired.

Yeah. So you know what I'm talking about. So you're going through the normal journey. Yes. Right. So, so here we are at Health 2.0. Yeah. What, so aspirationally, what would you, what would you like to see technology sort of address in healthcare that maybe doesn't, it's not addressing today? Yeah, so, um, my background is in human centered design and one of the chapters in my book called Design for Health, uh, where I interviewed like found the ideal, Debbie Kelly, who's a personal mentor, uh, you know, you know several other people who focus on design for health.

Um, as a human-centered design, um, I, I guess I can consider, call myself, um, pretty experienced. Uh, 'cause before I have cancer, I was actually a senior, uh, director of user experience, um, in our international design agency, um, where I work with large, um, corporate, um, global corporations that launch the, you know, like the global brands like and PlayStation.

You know, Sony Music, all these different large corporations. Um, so what I learned is that, uh, challenges with Silicon Valley, and then this may be also in other areas as well, is that you have all these people who's really good at technology, who go ahead and start a company. And I have no clue what problem is solving , right?

Yeah. You gotta start with the problem. Yeah, exactly right. And so, um, I always say like, you know, . Really is the one who make huge differences in terms of your product. So my company actually won, um, their patient-centered design, um, innovation prized as Stanford's, um, medicine X. Um, and a huge part of this because we talk to patients, we understand their needs, we ask them, is this the right program for you?

We ask them what kind of challenges that you are dealing with and the whole human centered design approach. It does not matter you designing a simple mobile apps or, um, you know, designing a large airplane. It's the same. You talk to the people you research, you study your competitive landscape, but you really is tie into the journey.

It's, it's interesting, so spending less time on the technology and more time immersing yourself in the problem. Yeah, understand the problem. Understand how your people are experiencing the problem. Yeah. And that will give you the, 'cause we can do anything with technology at this point. Yes. Yeah. But that will give you the empathy, the vision Yeah.

And the focus. Yeah. To solve the exact problem that you're Right. Right. Yeah. And there's also like, you can dive into like different approach, the small anthropology approach where just go observe. There's also more like, you know, psychology approach where you are asking questions, right? And then, uh, but more importantly is how do you actually create a user journey to understand at which point your product actually going into intervention.

Yeah, that actually able to, you know, sort of change that user journey in a more positive experience versus just designing a product without knowing which part of user journey you actually fit into. Right. Yeah. Well, thanks for your time. We're about to get inundated when this session. Lets go with a lot more sound.

So, um, thank you for your time. I really appreciate it. Yeah, thank you. I really enjoyed talking to you. Gosh, what an exciting conversation with Amy . Uh, I'm sure you, you, uh, caught her enthusiasm, her energy around. Uh, just helping to support people in a similar challenging situation to what she faced. I, uh, I really appreciated her perspective and her, her drive for innovation.

The, uh, the story though that's gonna stick with me oddly enough, is, um, I. When she took her support group, her four friends with her, uh, to receive her diagnosis, and, uh, just what a beautiful picture that is of having that support group. And I would love to just think through what it would look like for everyone to have that kind of support group as they're facing that kind of, uh, situation, that kind of, uh, uh, diagnosis.

And, uh, you know, I, I, I wish Amy the best. And, uh, and, uh, if you want to learn more about it, you can hit her website@danceforhealing.com. And, uh, check out her new book. It's in the works. It's not published yet, but she is, uh, uh, she is moving in that direction. So, uh, keep a lookout for that. Please come back every Friday for more great interviews with influencers.

And don't forget, every Tuesday we take a look at the news, which is impacting health. It, uh, keep your feedback coming, bill at this week, at health it.com. It's all really helpful, good, bad or indifferent. It helps us to make a better show for you. Uh, this show is a production of this week in Health It. For more great content, you can check out our website at this week, health.com or the YouTube channel this week, health.com, and go to the top right, click on, uh, YouTube as the quickest way to get there.

Thanks for listening. That's all for now.

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