Join us as we launch a brand new series on Uninvisible Pod — INNOVATORS! In this series, we will periodically release episodes including short-form interviews with founders whose work is creating waves of change in chronic and invisible illness and disability. First up, as we dive in to the end of the year and look forward into 2021: Yale graduate Celine Tien, founder and CEO of Flowly, a mobile platform for chronic pain and anxiety management; Yael Elish, formerly co-founder and head of product at Waze and now founder of StuffThatWorks, an AI-based crowdsourcing platform where people share information in a structured way about their experiences with a chronic condition, aimed at learning which treatments work best and for whom; and finally, Dave Korsunsky, healthcare entrepreneur and founder of Heads Up Health, a mobile app and web portal that integrates all of a patient’s health records and syncs with pharmacies, clinics, and a wide range of popular health and fitness apps. Like me, you might be reading this and saying, WHOA! I was so blown away by all these individuals and what their services offer the Spoonie community, I wanted to give them an opportunity to share their stories and the importance of their work with you. So: merry happy everything, from me, Celine, Yael, and Dave…to you!
Tune in as Celine, Yael, and Dave share:
- how Flowly offers interactive experiences that teach users to control their nervous system through mobile VR and biofeedback for relaxation training
- that biofeedback is traditionally difficult to access; and now, it’s fully accessible through Flowly
- that Flowly is affiliated with University of Pittsburgh and USC to make sure their app is truly efficacious
- that the work of biofeedback — and Flowly — is in creating new neural pathways
- how Celine’s upbringing influenced her to create Flowly
- the goal of StuffThatWorks: to empower patients and medical professionals through the creation of knowledge bases that are automatically analyzed and personalized
- how the information shared through StuffThatWorks is helping build the world’s largest and most up-to-date database of patient reported outcomes for every chronic condition
- that within each community on the StuffThatWorks platform, members can see insights about anything from age of onset, to most reported and most indicative symptoms, early symptoms, indicative comorbidities, aggravating factors, treatments, and more
- how AI crowdsourcing has the potential to fill the gaps in our understanding of medicine
- that so many clinical guidelines were written decades ago — and StuffThatWorks creates the opportunity to recreate the knowledge base for various chronic conditions en masse
- why Yael started StuffThatWorks: because her daughter had a chronic condition at a young age
- how technology has the potential to eliminate bias
- how Dave was inspired to create his company after his own battle with maladaptive stress syndrome and gut health issues
- about the potentially life-saving importance of managing and monitoring our own health records
- that as the doctor/patient relationship becomes increasingly depersonalized and decentralized, it’s vital we track our own medical records to present a full picture to caregivers
- why data access is empowerment; and that in enabling people to bring their health records together in one place, patients can prevent a misdiagnosis when medical emergencies arise
- the founding principle of Heads Up Health: that well-organized data holds the key to optimal health
Lauren: Okay, guys, thank you so much for joining us. I am here today with Celine Tien. Celine is the founder and CEO of Flowly, which is a biofeedback app designed for people with chronic pain and chronic illness. And she's going to talk to us all about it. So Celine, thank you so much for joining us.
Celine: Thanks for having me, Lauren.
Lauren: Absolutely. So for those who may not know, I'm working with you guys as a patient advisor, which is a really exciting role. I wondered if you could give everyone tuning in some background on the company and the services that you provide through the app?
Celine: Basically, we're a mobile platform. And at its essence, we teach users how to better manage their nervous system by teaching them how to control their heart rate and their breathing. And so this is implementing something called biofeedback, which you mentioned. Biofeedback is a therapy that has been used for decades. It essentially just means you're able to see how your body is doing in real time. And then you're given the tools and the exercises to actually learn … okay, then how do I start to tweak my body so that I can feel better? And this is obviously helpful for really, everyone, but it is especially helpful for people that do have chronic illnesses, chronic pain or anxiety. That's basically the population we really focus in on. So, there are exercises on the app that engage you in biofeedback; you actually put your finger on the back of your phone camera, and we collect your real-time heart rate.
Lauren: I mean, that is so cool that you can do that on the phone. When I first did that, I was, like, what?!
Celine: It's really awesome because it takes a therapy that's been pretty hard to access. Right now, it's just on the iPhone, but later this year, it will be available on Android.
So soon, everybody, just with their smartphone, will be able to do this obscure but very effective feedback right from your bed or couch at home.
And then the other cool part of it is, with one of our subscriptions, we actually send you a virtual reality headset and then you can do all the experiences while you're completely immersed — sitting on the beach with the Aurora lights above you, by the lakeside, literally on another planet. But basically what it does, it helps distract from maybe any anxiety or pain you might be experiencing in the moment, but also helps with long-term learning of the biofeedback. Because it's just very high stimulus and very engaging in a gamified way.
Lauren: That's one of the things I love; I'm glad you brought up the VR aspect. Because with this VR headset that you get that you can basically put your phone into, and it turns the headset into a VR headset, you've worked with an amazing animator and created worlds. So you're giving us access to forms of meditation in order to track biofeedback. Really, it’s biohacking, isn't it. It's a really cool thing. So, you don't have to be chronically ill to use this app. It just happens that if you're chronically ill, you'll probably see even more drastic benefits from it. But these worlds are super-immersive and all different, and address different things, right?
Celine: No, exactly. My co-founder, Narae Kim, she's one of the most awarded 3D designers. And it's been a really interesting and fruitful exercise in designing experiences that are at once effective therapeutically, but then really just freakin’ relaxing and fun. From our community base, I think that it's been really working. We work with University of Pittsburgh Medical Center and USC on designing a lot of the protocols in the program, so that we make sure it is efficacious. But then on the other hand, we just want it to be fun and relaxing. At the end of the day, I feel like health sometimes feels a little bit intimidating or scary or stressful; especially in our community of Spoonies and chronic illness warriors, it becomes a very stressful point. But this is a way for you to release that, and you enter literally another world and embrace your health through something outside of yourself. But at the same time to learn how to control something inside of yourself.
Lauren: And because I respond so strongly to visual stimulus, I find that even if I'm not using the app, if I need to calm down for a moment, sometimes if I close my eyes … I’m literally imagining it now … I can imagine myself in those worlds because they're so fully immersible. And easy to get into, really.
Celine: No, you literally touched on the one of the most, I think amazing points of VR … is that really what we're able to do is create new neural pathways basically for you, really fast and easily. I remember we did case study subjects … we're in clinical trials right now … but we have done case studies and one of our subjects … he had only done VR for maybe one or two sessions, and he was in church … he has really bad back pain for 15-plus years, and his back was flaring up. And his wife remembered what he had done in VR with us. And one of the experiences actually had a horse in them.
Lauren: That’s the one I was thinking of. I was thinking of the comfort one!
Celine: Yeah, the horse one. And she was, like, “Hey, remember the horse …” whispering to him during service.
And he said he closed his eyes for a moment and just recalled the environment, the horse, and immediately his pain started to go down.
It's not voodoo in any way. It's literally that he created a neural pathway where he created a trigger for myself with this visualization. His nervous system was literally learning to relax. And that's what happened.
Lauren: No, it’s not voodoo; it's actually understanding that your brain and body are capable of voodoo, that you're capable of self-regulating, if you have access to tools like this. Which, as you say, have been traditionally harder to access. Can you talk to us a little bit about why they're difficult to access? Or why it’s historically been harder to access these biofeedback techniques?
Celine: Biofeedback, it's been used since the ‘70s and ‘80s. There are hundreds and hundreds of studies on this. But traditionally, how it works is, you have to go into a clinic; you need a biofeedback specialist. And then you have to get hooked up to a bunch of sensors. The sensors connect to this big computer. Then you're able to see on the computer your real-time heart rate, your real-time breathing, sometimes even your EEG, your brainwaves. And then a physician or specialist walks you through relaxation exercises, as you're looking at these graphs, and says, “Hey, start to breathe a certain way. Do CBT (cognitive behavioral therapy) in a certain way.” And then you'll learn how your body changes as you're responding to these exercises. And eventually, you learn to do them on your own, basically, without biofeedback. But normal biofeedback, it's hard to get someone to go into the clinic even once a month — but you need to go into the clinic and do it for an hour once a month for at least 18 months for it to work. And to even find a clinic like this, it's hard to find a computer setup; this is hard. And so essentially, in recent years, technology has made it possible for us to make it all very compact and mobile — which is something that we've been really excited about.
Lauren: Yeah, you've revolutionized access to these techniques, because we don't need to make a doctor's appointment now in order to access biofeedback and to create these forms of relaxation for ourselves. Which is super awesome. Can you talk to us also about how Flowly was founded, and what your background is as a founding member, as the CEO?
Celine: It really was founded from my personal experience; my whole family is in the medical space. My father was actually the chair of neuroradiology and MRI at Duke. And when I was growing up … actually, still now … my parents are both engaged in biotech; they're running pancreatic cancer clinical trials. Pancreatic cancer, in its terminal stages, some people might know, is extremely painful. A lot of people close to me would actually pass away from morphine overdose and not the cancer itself. So pain management is something that my parents had actually worked on. My father had passed two Orphan Drug Designations, specifically for pancreatic cancer pain. And it's something that's always been in our thoughts. Later on, fast forward … I was kind of a rebel, I was, like, “No, I'm not going to go into the medical field like my parents.” And so I studied entertainment and film, writing, and I worked at DreamWorks, in China and in the US, doing interactive content development and animation. And there, I got in touch with a lot of new technologies like VR and AR, which I thought was super cool. I basically fell in love with VR. And I realized, as we dug into it, that there have been decades of research using this technology for therapy, and specifically for pain and anxiety. That was like a no-brainer for me. At that time I already had my co-founders. We worked together on a prototype; we had the chair of anesthesiology at UCLA come in help us design the trials, the program, etc. And it just kind of snowballed from there.
Lauren: It’s so exciting. And I think it's so fascinating, too, that your background with your family … that your parents brought their work home in the sense that you were connected to the patients that they were working with, and there was a really holistic experience there for you with patients. Which says to me a lot about who your parents are as physicians as well.
Celine: I actually love that you picked up on that because my family's very not traditional. I was homeschooled growing up. I was acting on sets for most of my life growing up. So I had a very untraditional education — which meant that I was in the office with them, I would go to trials with them. I knew a lot of the patients’ families. And I think a big thing for me as well was learning that pain — and when I say that, I mean physical, mental, social pain — it affects not just the individual, but also their caretakers and the families around them. Which is why I think when we built Flowly, we really wanted to build it holistically, thinking about … how do we address all parts of pain? And how pain can affect someone as a whole being. Because we are connected.
Our body doesn't work in silos, and neither does our community.
Lauren: I really love that perspective. And you're so young and connected to all of us. And I’m, like, how can I be cool like you?
Celine: My team and I, Julien and Narae, my two other co-founders, we worked on this for a few years. We case-studied; we worked in clinics ourselves, administering this with nurses and doctors ourselves, every single day for six months. So we've worked with hundreds and hundreds of patients. And everything I say about this space is really what I learned from the patients themselves. That's when I learned that chronic illness warriors, Spoonies, anybody that has experienced this … they've become so educated and resourceful, and just so knowledgeable about this space, that I respect them so much. And that's basically how we've learned everything.
Lauren: Yeah, it's super cool. And you're also super committed to inclusion; that’s something that we've talked about a lot, too. You’re already making something that is either financially or logistically inaccessible to people … accessible in the palm of their hands. But it's also that you're looking at what is a free app up to a certain point, and making this something that is more affordable on a long-term basis as well.
Celine: Yeah, definitely. So the first eight intro sessions, they're free, you can try them out. From there on out, there are two types of subscriptions. However, our goal is in the long-term for this to be reimbursed. But as you know, that's a lengthy process, especially in the US. And so we're going through trials, we're going through all the necessary regulation steps. But in the meanwhile, we did want to release it direct to consumer and out-of pocket for people that could have the privilege of using it, with the long-term goal of making it even more accessible.
Lauren: And the thing about that, too, is that a subscription to something like this on a monthly basis that you can budget out for, and is a much lower cost than going to see a doctor for 20 minutes … it’s a world of difference in terms of costs. Which in my mind makes things, even though you will pay for them at a certain point, still makes them a lot more accessible to a lot more people. So that's a huge plus.
Celine: Yeah, for sure. And during COVID, I remember a lot of our users would tell us that they used to spend $75 to $125 on one acupuncture visit or chiropractor’s visit. But especially with quarantine, they've had to stay at home where they couldn't go to these places, and Flowly is all remote. And it's also significantly less expensive than solutions like that.
Lauren: Yeah, absolutely. So are you guys working on new technologies as part of the app that you can tell us about? Are there going to be some new releases soon?
Celine: There are so many things! What I will say is that one of the things we recently released, that I'm really excited about, is … for our pro subscription, we have a full data dashboard. Which means you can actually track everything, from your resting heart rate, heart rate variability — your HRV, which is something we talk a lot about in the app. So if you get onto Flowly and do even two intro sessions, you'll know what I'm talking about. You'll actually see your heart rate graphs, you'll see your breathing graphs.
And a lot of our users have actually said using Flowly and seeing their data dashboard has incentivized them to actually go talk to their doctors.
Because they're learning some new things about themselves. One of our core beliefs is that data, when used the right way, can really help us better our lives and help us understand ourselves better. So we just collect what's necessary, which is your bio data, and then we show it to you and analyze it for you. And of course, going forward, we're creating new technologies to create and develop and collect, basically, new data points for you to look at. That's all I can say on that point. But I will say we have some cool new worlds coming up!
Lauren: Ooh, and there's already close to a dozen worlds. Having that is awesome.
Celine: We just released one called like Sunset Sea; we're gonna have one that’s In Deep Space, where you're traveling through space. Just a bunch. It's gonna be fun.
Lauren: Yeah. And I love that between your imagination and Narae’s imagination … when I go into the worlds, I’m, like, yeah, that's what I was thinking! There's this weird connection, something about the experience feeling kind of universal? I don't know how you guys have done that. It's pretty cool.
Celine: That’s all Narae; I give her credit for that completely. And it's real, but I think a little more on the fantastical side — because we didn’t want to root it in anything that people couldn’t relate to. But we can all relate to our imagination. And we can all relate to something different. And I think that's been really appealing for a lot of people.
Lauren: For sure. Also, you guys have a community section. So people can post on a board and talk to other users in the app, and get tips and tricks. Was that in your mind, one of the first things that you wanted to develop, when you were creating the app, too, so that you could connect people who are having this experience together?
Celine: Honestly, it wasn't, it wasn't at all. And then it was through, like I said, talking to hundreds of patients that we would ask them, “Okay, what is it that you actually want?” Obviously, people would be, like, “Oh, less pain,” or, “Less anxiety” … stuff like that. But I think we actually collected survey data on this … the number one thing we got was more socialization. Because people felt really isolated. This is pre-pandemic, just in normal life … isolated for various reasons I think a lot of us could relate to. And that's when we started thinking … pain is multifaceted, pain is actually considered a bio-psycho-social disease. And how do we adjust the social part? We have the bio and psycho part. But what about this other critical part? And so that's when the community really started to form. We wanted to think about what would be a positive manifestation of that.
The way that our forum works, it’s really based around personal experience and positivity and advice-giving.
We even have people ask, “Oh, what's the best pillow you sleep with?" Things like that, that would really help, and sharing experiences with each other.
Lauren: I love that so much. I chime in there sometimes. I’m, like, “Hey, do you guys know who I am?” (laughs) So are you noticing any new trends in this area of healthcare that you're leading on? You're at the forefront of bringing VR into health care for patients and doing biofeedback accessibility. Are there any new trends that are developing alongside what you guys are doing that you're seeing is the future of this kind of app, and this kind of setup?
Celine: The obvious answer would be remote care, anything that is done from home — telehealth, telemedicine, digital therapy. This is actually considered, under FDA, to be digital therapeutics, which is a new pathway. So it's definitely, in our view, the future. Medicine can be digital, and digital platforms can be medicine; that's a way of thinking about it. It doesn't replace anything; it's not a substitution. We view the solutions and platforms as integrative and complementary to each other. So our users— they are on medication, some of them are not — it doesn't matter. You can do it together and they serve different needs. I will say in terms of trends, what we've been really surprised about is that there hasn't been more push to create these platforms for chronic conditions and chronic pain. I've been shocked how little work there has been in this space.
Lauren: Do you think that’s just because of the way the medical system and able-bodied people view chronic conditions? So many people are in denial about the numbers of people who are living with these kinds of disabilities.
Celine: Oh, for sure, for sure. And I think one of the first things we learned … I’ll use chronic pain as an example, because that's a huge segment of the population. Technically, one in three Americans have chronic pain — that's 100 million people. There are only, I would say, two or three apps on the Apple App Store that cater to that population. Barely any talk about it in mainstream media, barely any celebrities talk about it. I use celebrities as an example, because a lot of times they're the loudest advocates, you know what I’m saying? One thing we realize is the pharmaceutical industry has really taken a strong hand in the branding and the way that we’ve slipped this issue under the rug. Because medication or not, chronic pain is a condition worth researching and worth studying and worth doing new methods and alternative treatments — integrating with traditional treatments. But there has been barely any work in this space — until the opiate crisis came about.
Lauren: Well, the pharmaceutical industry invented that crisis anyway! No wonder they’re quiet about chronic pain!
Celine: Exactly. It’s just so unfortunate, because whether or not that crisis … this is the real crisis, what's the underlying reasoning?
There’s people in a lot of pain and how do we help them?
Lauren: I love that you're also someone who is, for all intents and purposes, living in an abled body, and yet so aware of others and particularly other marginalized people who are living with pain. So as someone who is a Spoonie, I thank you very much! Can you tell listeners where they can access the app?
Celine: We’re currently on the Apple App Store and soon to be on Android devices as well. You can also go on our website, flowly.world. And if you sign up with your email there, we’ll give you updates on new features, maybe new discount codes, things like that. Check us out. And we're @officialflowly on all social media pages.
Lauren: I love it. Is there anything else that you'd like to share with everyone? No pressure.
Celine: This is what I always say … whether or not you use Flowly, the one thing that has really been ingrained in my team is that you take the time in your day to really breathe. One thing I always recommend is trying nasal breathing, which is in and out of your nose — not in through your nose and out through your mouth — in and out of your nose. And we talk about on the platform why that's so important. But you can also look it up. Really, take that time to breathe. It’s really important.
Lauren: Side note about that … I recently finally purchased for myself these “nasal dilators” they're called. Because I'm someone who, when I breathe in, the sides of my nose collapse from the pressure of the breathing in, and so I'm taking in less oxygen. The dilators are like little baskets that sit in your nose holes! They keep the collapse from happening, and enable you to take in more oxygen. And I feel like my brain is working on another level because of it. So I'm excited to now try them with the app as well and see how that changes things.
Celine: You should totally. Lauren, If you haven't read it, there’s a book called The Oxygen Advantage, which talks a lot about that. It's so important. Even when I workout now, even if it's high intensity, I don't breathe through my mouth. I'm training myself not to. My mother takes it to a whole different level … my family, they're very health conscious, and my mother tapes her mouth when she sleeps, so that she breathes only in and out of her nose even when she's sleeping.
Lauren: Wow, that's so interesting. That's been a whole thing for me because I have obstructive sleep apnea. When I first got my CPAP, I had to put a big bandage around my head to keep my mouth closed. Now, it's pretty much … I’ve retrained myself. It's a learning curve. And our bodies remember. When it's become a habit, it's hard to change that. But I love that you're a biohacker. And doing that for your better health, but also encouraging other people to do it. It's super cool. So guys, check out Flowly. It's an awesome app. I will happily put my stamp of approval on it. Celine, it's been such a pleasure to talk to you. Thank you so much for being on the show today.
Celine: Thanks, Lauren.
Lauren: I am here today with Yael Elish. Yael is the founder of StuffThatWorks. She's an entrepreneur, and was also part of the founding team at Waze, as well as head of product. She's got quite an interesting background in tech, and moving into this health tech space. And we're excited to talk to her about StuffThatWorks. So Yael, welcome to the show. And thanks so much for joining us.
Yael: I’m very happy to be here.
Lauren: Thank you! So can you tell us a little bit about what StuffThatWorks is, and the service that you provide through the platform?
Yael: On StuffThatWorks, what we do is empower people with chronic conditions to join forces and basically create a knowledge base for every chronic condition — that’s automatically analyzed to figure out which treatments work best, and for whom. So basically, anyone suffering from a chronic condition can come onto the platform. By opening a research community, or condition, and simply inviting other people to contribute information in a structured way that we've organized, they very easily create knowledge bases for their condition that are automatically analyzed by chronic conditions and which work best and for whom. And so it's a personalized way to learn about treatments. The space that we're in is called ‘real world evidence’. It's a very, very big buzzword in the medical world, because everyone is realizing that all the information about treatments and the effectiveness of treatments comes mostly from pharmaceutical, clinical trials that are extremely limited in the number of people that it covers. And also in the fact that they’re controlled, and they're very far from representing the very complex nature of life and how people experience the condition and treatments in real world. So what's really needed is data in large numbers coming from people in the real world, about themselves and about the treatments that they've tried — and what works best and for whom, at the end of the day. And that can only be done in mass numbers, which is extremely costly. And this is where crowdsourcing is at its best — solving very big problems that otherwise cannot be solved.
Lauren: I find it really fascinating, because it's finally bridging the gap, isn't it, between anecdotal information that patients share in their own communities and, as you say, these large-scale research studies. Really bridging the gap with numbers. So you're able to do that by providing this platform that generates data through AI. And in that sense, it’s really not biased either, except that the patients are providing this information freely.
Yael: What's happening, if you're diagnosed with a condition … and I don't know, the number is about 10,000 different chronic conditions … you usually are not getting the optimal treatment, because there isn't such data. So you're kind of being treated on a trial-and-error basis, right.
You try one thing, it doesn't work; you get the next, and you're usually not on the optimal treatment for you.
If you go to Facebook groups, Facebook has 500,000 health-related groups. So every one of those 10,000 chronic conditions has tens of Facebook groups where people are coming together and they'll do two things: One is support-related discussions. And the second thing is just asking again and again … Have you tried this? What do you think about that? But the information is not shared in a way that someone can make sense of, because it's not structured. So the idea with StuffThatWorks is to do exactly the same thing — people come together, but they share the information from the get-go in a way that's structured and optimized for analysis. Now, when you think about it, once you do that, and you do that for all conditions at the same time … basically, we already have 150 different conditions on StuffThatWorks, and 250,000 people that have answered 60 questions each … you get a very massive database that's consistent across all conditions. And it gives you information much beyond the one condition. It also gives you a lot of information about how the different conditions interconnect. Which is when it gets really amazing. So we now have 12 million data points on StuffThatWorks about those 150 different chronic conditions. It's providing really invaluable data. It’s really formidable.
Lauren: And this data also can be used not only by patients to optimize their treatments, as you've said, but also by practitioners. If they're able to reference what the patients are sharing there, on the platform, to be able to, instead of doing this ‘fail first' method, as you mentioned, to actually be able to potentially go straight into what is potentially a more optimized solution for their patients, too.
Yael: Exactly. The quality of the data is really important to us. So very early on, we've done a lot of work in validating the quality of the data, and the quality of the data is really very high. What we've done is compare our data to what's known medically as consensus documents and guidelines, and we're seeing that it's representing very well. And once you have data in quantities and many of our conditions across the thousands of contributors, it means that you really get amazing insights. You start seeing effectiveness of treatments. So, with comparative effectiveness of treatments, most of our conditions are already ranking the effectiveness of the different treatments. The way it works, by the way … people start their own communities. And as the communities grow in terms of the numbers of contributors, the data automatically becomes more and more personalized and interesting. So in the very beginning, it automatically forms just knowledge bases about the condition. What are the symptoms? What are the early symptoms, what are the triggers, what are the different treatments? So when you get to about 100 contributors, you will get a list of all the different treatments, organized by most tried. And then at about 500 contributors, the list of treatments will now be sorted by most effective. And then at about 2000 contributors, you can see the different effectiveness for different subgroups in the population. And at about 10,000, it becomes. what will be an AI prediction of what will be effective for you. And in addition to that, because we already have this massive database that's cross- condition, we already know the level of match of every person to other people in the condition, basically. So the AI algorithms are already detecting misdiagnosis, for example, and things like that. And it's very interesting.
We created a map, with every person being represented as a dot on the map … so you can see the different chronic conditions, and you can see how some chronic conditions are extremely noisy in potential misdiagnosis.
Those are a bit more clear. But that's really just by having this data that's very deep for every person, and it's cross-condition; we collect in it the same way across all these different chronic conditions.
Lauren: And that's absolutely addressing that issue of bias as well. In that you have AI that is designed not to be biased. And this idea that you're catching misdiagnosis for people is super exciting, because it sounds like this is something that could also influence clinical guidelines in the future, possibly, as well.
Yael: Exactly. Usually, what you see in tools today that do diagnosis is that they create a kind of a rule-based system based on existing knowledge, clinical knowledge basically — presenting kind of the decision-making tree that's known today, and that's taught in the medical world. We’re doing actually the opposite. Because diagnosed people are the ones sharing information on StuffThatWorks. We know that all the people that we have have already been diagnosed. And now when we do the reverse thing … okay, this is a diagnosed person, these are all the people, and now basically, we can do the reverse thing. But based on smarter data, because those people are all sharing the real information about who they are in the real world, all the tiniest details about their specific symptoms, and so on. I think it's very important to remember that the medical literature was written tens of years ago, hand-curated basically. And that's very, very far from what's needed — the complexity of how every chronic condition is represented in every person, the different symptoms, different treatments, across different age groups, gender, and so on. So this is the first time we're feeling very excited about the fact that we have the opportunity to recreate, basically, the knowledge base for every condition. in mass numbers.
Lauren: And those numbers, as well as your design of the AI, are providing further validation for patients, I imagine, too. Because there are so many of us who are living with chronic conditions, where the chief complaint is that people aren't taking us seriously or we're not being believed. And to be able to find community among others who are in the same boat … but also to be able to really optimize the direction of your treatment, as well as your diagnosis … this has got to be something that's a huge relief to a lot of people in the community.
Yael: Definitely, yes. One of the most frustrating things on earth could be suffering from something and not getting the validation. From the simplest angle possible of just feeling something that is not being validated by someone you live with, but definitely when you're in pain, and not getting the validation, is a terrible thing. I started StuffThatWorks after a significant exit with Waze; I was kind of sure that I was going to be in retreat and doing interesting things. But then when this idea sort of somehow came to mind, and you realize that there's really a potential for making something very significant for people … Because the thing is that you stop being dependent on people; you empower people to do something very simply that they could otherwise not do. So all you need to do as someone who's interested in doing something for your condition and learning something, is just sharing a link and inviting people to answer and contribute information — and everything else just happens automatically. I have this detective nature of, I want to know. I’m extremely frustrated when I don't know. I started StuffThatWorks because my daughter had a chronic condition very early, when she was young. Not one of the life-threatening ones, but every chronic condition has a very heavy toll on the person and on the family. And it was just getting worse and worse. We were given one treatment, and a different treatment, and specialists, and so on. And somehow I had this intuition that there had to be something out there, and I just kept researching. It was a long time ago, I think before even Facebook groups … probably 10 years ago. It took me about two years; I searched almost every night, and after two years I ended up finding that once we found the equivalent doctor where we live that treats this in that specific way — and it's medicine, it's not some voodoo or something — it got resolved within three weeks. And then it happened again with her.
We know from our data now that there are about 300 different treatments for every chronic condition, unique treatments for every chronic condition.
Lauren: It’s a lot to sort through for a patient, let alone a caregiver!
Yael: Right. And if you go to a doctor, you get drugs. If you go to a psychiatrist, you get drugs. If you go to alternative, you get alternative. If you go to a surgeon, you get surgery. So nobody really takes all this together. And they don't really know. It’s a lot of information. There are so many new things, new products, new information. No one person, the best doctor on Earth, can have all this combined knowledge. So I think it's very smart. It's very important for people to know that there's not much science behind the way you're being treated. Everything that you do today … if you buy a product, if you have an app, delivery services, whatever … there’s so much science behind ad serving, every possible aspect has so much more tech than medicine today. And people don't know. You think you're going to someone who knows a lot.
Lauren: Yes. And what I love about this is that this is tech, this is AI that can help humans. It’s not saying that our humanity is at fault here, but it is that, as you say, a lot of these studies that have been done in the past, clinical trials, etc. … they're based on old information that was curated by humans, who can be faulty. Whereas this AI is going to be more targeted for individuals, as well as practitioners.
Yael: Clinical trials are great, but they're extremely costly; clinical trials cost about $50,000 per person. So the cost is so high, and 100 people would undergo a clinical trial. And the environment is a controlled environment. So 100 people cannot represent the complexity of what happens later on in the real world, and among different people. They cannot represent what's actually going on. And this is only drugs. There are many, many different possibilities out there that are not being researched. And there's no data. So doctors do not have evidence-based information to use and treat. Take, for example, meditation. Meditation, until a while ago, was not really something that was recommended by doctors, because there was no evidence behind it. Once it started getting researched, it's becoming one of the most recommended treatments for most chronic conditions. And that's actually something that's not a drug. Meditation is actually fixing the way the brain works.
Lauren: It’s not a Band-Aid. It's actually creating neural pathways for many of us.
Yael: Exactly. And this is critical information. It's extremely important information. What we're seeing on StuffThatWorks is information that becomes then proven in the medical world, but early on. DBT (dialectical behavior therapy), for example, was initially developed for borderline personality disorder. Now you're seeing that being reported across many conditions as a very effective treatment for many mental conditions.
Lauren: So that's something that happened early on; you guys saw that trend. Are there other trends that you're seeing in general across the platform, in regard to certain conditions or treatment?
Yael: We’re opening up the platform for free for medical research on real-world evidence. The doctors that are looking at the platform are seeing signals that are surfacing. For example, co-morbidities. So when we provide a data description of a condition, there is a section called “the co-morbidities”. What are the co-morbidities, or the co-existing conditions, and we put it together with the X condition. So we show the most reported co-morbidities. But then we have a section that's called "most indicative”.
Most indicative is basically an AI analysis; a certain co-morbidity can be reported by many people for a specific condition, but it's not necessarily an indicative.
It's not a predictive co-morbidity for a condition. Just the other day, a doctor that we were working with was looking at Crohn's, and he saw asthma as being an indicative condition, a co-existing condition with Crohn's. He’s a specialist gastro; he said, “We were not familiar with that; that's totally new for me. I wasn't aware at all of asthma as a co-morbidity together with Crohn’s." And he looked in the literature, in PubMed, and found that there's a couple of researchers that are pointing to that. So those are things that surface, at no cost, when research like that is very costly, and very time-consuming. A lot of insights are just surfacing very, very simply to everyone, before we even get to significant research.
Lauren: It's so exciting, this idea that we can finally be ahead of the curve!
Yael: By the way, the reason we called it StuffThatWorks is because people know. And when you transform this knowledge into data, this gets you ahead of the curve, just like you said. And the tagline that I was thinking about was “leveling the playing field”, because patients or people will now have more knowledge than doctors. This is how I feel about it … at least the same level, if not more on certain domains that interest you for what you want to learn about the condition and about other people experiencing the condition — and especially about the treatments, the treatments that work best, or not. And now, we will also reverse that to possibly identifying that you're misdiagnosed, or potentially diagnosing you better once the data we're seeing is already there. So this is where we feel … empowering people … I like that.
Lauren: Yeah, absolutely. We hear this buzzword ‘patient-centered care’ all the time in discussions about health care, especially here in the US. And it seems to me that this is the answer for patient-led care, if you want patients to take the lead. Patients are not normally empowered, or have systems in place, that enable them to collate data at this scale. And this is exactly the gap that you're filling with StuffThatWorks, that you're literally handing the power over to patients, because you're asking them to provide information so that we can all better serve ourselves. And if the medical community responds, then even better.
Yael: And they respond. We have very, very strong support from the medical community. By the way, amazingly, all the way to cancer. When I started this, I thought that some conditions are taken care of — diabetes, heart, definitely cancer. And now we're getting approached by organizations that are saying, “Hey, it's not the case.” We don't have centralized data about effectiveness of treatments in cancer, even the biggest cancers. The information is kept within the hospitals, the places that take care of it. There’s no centralized place where the medical establishment is actually seeing large data, even for cancer. Which, to me, was just really shocking.
Lauren: It’s so interesting because, as a patient, it's not shocking to me. I’m, like, yeah, of course. This is the difference. Because having experienced it from within the system, we know that, especially in health care, you have to follow money trails, too, because the agendas are really structured by whoever is providing the funding. So whether that's a pharmaceutical company, or even an individual organization … these all really influence outcomes at the end of the day. And this is one of those things with StuffThatWorks, that's not even playing a role. What's even more exciting is that, as it's a free platform for people, that's something where you don't have to worry about corporate interest having an influence, or anything like that. It's literal data; it's probably the most unbiased kind of data you can get.
Yael: Exactly. That's exactly the thing. And you can't argue with data, The good thing is, that at the end of the day, data is data. This is why we're saying the organization is a data-driven organization. We have medical advisors, but the essence is: how do you collect data? How do you analyze data? That's pretty much it. By the way, we collect data from scratch, using open answers. So, “What are your symptoms?” We do not want to give you a list of symptoms; we want to create new data. So we're asking, what symptoms do you experience? And this open answer gets transformed into structured data.
It gets normalized and transformed into structural data, that's basically forming this new knowledge base.
And again, as I said, consistent across all conditions. So this is what makes it even more powerful, because you're not seeing a narrow view of one condition, you're seeing a broader picture of the interconnection between the different chronic conditions. But at the end of the day, it's a data organization; it’s data scientists, product people coming together. And medical advisors. But medical advisors, again, they don't have a say. It takes them a long time until they're even understanding the structure of the data. And with numbers, you cannot argue, which is what we really like about that. There are issues always with biases. There are also interesting ways to deal with biases, but they are definitely smaller in large numbers. And when you're technologically addressing them, there are more ways to deal with biases. But again, it comes back to large numbers and distribution.
Lauren: And it sounds like you're doing all you can to really eliminate those biases, too, in collating this data. Which is exciting. Are you working on any new products or technologies associated with the current technologies you're using that you can talk to us about as well?
Yael: So, the platform is very, very broad. I mean, in terms of service, there are a lot of features. When you go into the product, when you join a community for your condition on StuffThatWorks, there’s a lot of stuff that's going on. There's the AI that collects the data, and analyzes and shares the data back. But there are also social features, like a discussion board and chat. And there's also a way to add a research question, basically — to post your research question that's being sent to everyone. And the answers are being added to everyone’s original responses. So this is people's way of adding specialized information to the condition database, basically. But this is the the environment of the condition. The next thing that we're doing is providing this view, this map, of chronic conditions, where the map is created from those dots — who are individuals on the map — and where you basically can see where you are, where the people that are closest to you who are most similar to you are, how does it fit into the condition’s world, and a very powerful search where you can search anything on the data. So it can be a condition, a symptom, a treatment … a particular treatment for people who've tried this treatment in a specific condition … people that have this condition and this condition … that have tried this … and then you can see their report and you can contact them. You can see where they fit on the map, and things like that.
Lauren: Well, and I imagine also, you can then track environmental data in the sense that certain locations, certain environments, may actually influence the prevalence of a certain condition, or something like that.
Yael: Exactly. This is another direction that we're working on, adding, basically, geo-layers. So climate, weather, light, and all that — that has a significant effect on chronic conditions. That's easy, because it's added to everyone's database. We're opening APIs (application programming interface), allowing, also, to add more information to the data. But then later on, we'll also allow you to integrate your medical records, wearable devices, imagery, and so on. We're now starting only with the surveys, the core surveys about covering pretty much everything about you. It's going to get more in depth into everything.
But I think that what's exciting to us is that we are already seeing that we can predict with 85% accuracy, basically, the diagnosis.
So we can diagnose with 85% accuracy.
Lauren: That’s pretty high for accuracy. I mean, I would say most doctors can't even be 85% accurate!
Yael: But it's because we have this ability to see a large number of people that are diagnosed. So we train our machines, basically, to learn what is diagnosed. And then we can also test ourselves, because we have more people coming in where we know what they're diagnosed with. So we check whether we are predicting correctly. This, I think, is opening up very, very exciting directions.
Lauren: It sounds like you're able as much to zoom in as you are to zoom out. And having that more global perspective is something that we are needing more in medicine, that we're needing more as patients. It's very exciting for me, and I'm sure everyone listening is, like … what?!
Yael: I think this thing about chronic conditions, diagnosing you in one dimension with one, two or three conditions, is somehow limited. Because it’s usually more complex; it's more complex than just having a diagnosis. So when you put it on a map of similarity with other people and conditions, you get a better sense. The thing I like about it is that we're getting a little bit away from the traditional … we will keep having, obviously, all the diagnoses, what you're diagnosed with, and showing everything based on the current knowledge base of names of chronic conditions. But when you see it on a map, it gives another dimension. Where exactly you are, how close you are maybe to something different on the map, diagnosed with this thing. And this is how the AI, at the end of the day, will discover what are the effective treatments, and for who?
Lauren: And it sounds like this is also inching us closer to genetics and epigenetics and the role that they play. We know that genetic testing is very expensive. It’s not often that doctors will suggest genetic testing immediately for patients who have chronic conditions. And yet, it can be the most accurate predictor of possible co-morbidities for various conditions. So this is something where you don't have to take the genetic tests that might cost you hundreds or thousands of dollars. But you might be able to say … all right, if I have this condition, it's very likely that I may also have these other three or four co-morbidities. So to be looking into those, and requesting those tests from your doctors. I guess part of that work is also in encouraging the doctors to check out the research and to get them to say yes to a lot of these tests as well. But it certainly is a way to more inexpensively bring us closer to knowing ourselves better.
Yael: Hopefully, yes. I think it's definitely the way. It's really up to people. The more people participate, the better it gets. It’s as simple as that.
Lauren: Yeah, well, on that note, where can listeners access StuffThatWorks? How can they start doing research and contributing to it as well?
Yael: So … StuffThatWorks.health, and you can search for your chronic condition. It's either an open community with contributors and content, or it hasn't been opened yet and you can start it by yourself.
Lauren: That’s amazing. And what would you ask listeners today … is it that they log on and log their symptoms and diagnoses?
Yael: So basically to join your condition, and you'll be participating in a survey where you share at least 50 to 60 pieces of information about the condition, about how it affects you specifically, about the treatments that you've tried, about the treatments that have worked. And once you do that, you’ll also get personalized information, or increasingly personalized information. It's important to know that in crowdsourcing, there's no value upfront. But as it grows, as more contributors are on board … the small conditions are more in the building phase, and they learn more about the condition. And as it grows, as more contributors join, then the data becomes more and more personalized, and gets into the effectiveness of treatments. But it's interesting. From the very early stages, it's actually pretty interesting. Even the simplest information — about the symptoms, triggers, co-morbidities, the indicative ones, the less indicative ones, the treatments … is really interesting. And talking to people, seeing their reports.
When you contribute, you get this report about the information that you shared, and people can see each other's reports and contact each other.
And it's extremely helpful. We hear that a lot — how much of a relief it is to see people, and to be able to interact with people like you.
Lauren: Absolutely. And how long, roughly … I know you said that it's like 50 to 60 questions in the initial intake … do you know, roughly, how long it takes to fill out that form? I suppose it depends on how many diagnoses you have, too.
Yael: It should take about 15 to 20 minutes.
Lauren: So it's not too time-consuming. This is a great way for everyone tuning in to get involved from a research perspective, without having to enroll in a clinical trial. But to support research — and our influence on healthcare and, literally, the patient voice. That's literally what we're doing here. A reminder that you can find StuffThatWorks at StuffThatWorks.health. Yael, it's been such a pleasure talking to you today. And I'm so excited for everyone who's tuning into the show to try out the platform and get involved.
Yael: Thanks, Lauren. It was a pleasure.
Lauren: All right, guys, thank you so much for joining us. I'm here today with Dave Korsunsky, who's the founder of Heads Up Health. He's going to tell us all about it. It's really all about keeping all your health data in one place — which for those of us with complicated medical records is pretty important. So Dave, thank you so much for joining us.
Dave: Yeah. Thank you for having me.
Lauren: Total pleasure. So why don't you tell us about Heads Up Health — why you founded it, and exactly what it is about these services that you provide that would really help our listeners on the show?
Dave: Sure. There's a couple of things, really, that brought me down this path. Like many people, I had a long career in the corporate world, in the tech industry in Silicon Valley. And I became very intrigued with the idea of how I can use technology and data to perform at a higher level at my job. So I got swept up in this whole notion of quantified self at the time. This was way back in 2011, 2012 — long before this whole market of digital health stuff had gone mainstream. And so I got very comfortable with the notion of measuring my own body's parameters. Then it was not too long after that where I went through some health challenges — that actually were not easy to diagnose. What I was dealing with was essentially called maladaptive stress syndrome. Which basically means your body is no longer able to process the stress in a healthy normal way. And the things that used to help me eliminate stress — exercise, going out with friends — actually got to the point where they started working against me. So I got into this situation where I didn't really know what to do. Went to my regular doctor … I've lived all over the country, I don't know where the heck my records were … he told me I'm fine, get out of the office. And so that's where I really started digging into the numbers. And there was a part of me that just really wanted to have some objectionable data on this path. First of all, I wasn't getting the help I needed from the medical community. So I took it into my own hands to get all my labs put together … so I could see what was happening with my thyroid, where there were some undiagnosed thyroid things. And I worked with a functional medicine doctor, and they were able to help me with some issues in my digestive system that had been undiagnosed, pretty serious infection in there that no one tested for. So I was able to use the numbers as my sanity.
Because as people listening to this show I'm sure are aware, you ask the same health question to 10 people, and you'll get 500 different answers. So how do you find some sanity?
And for me, the sanity was the numbers. I could use the numbers as my baseline, and then start to gather information, and try different things, and reference the numbers again. And I realized … wow, this was really helpful for me, personally. And it became my life's work to make this available for anybody else who needs it.
Lauren: It’s really important that people know about creating that story to share with your doctors, isn't it? People who are dealing with chronic health issues, particularly with complex health issues, are going to need to have all their medical records in one place as they meet new specialists, as they go to various doctors -- as you did. But you had to do this all for yourself. And I think a lot of people in the Spoonie community are doing that for themselves, but wish that there were an easier way to do it -- right? And that's exactly the problem that you found a solution to.
Dave: Yeah, well, I did it the hard way. I had to phone my doctors. And I got a bunch of stacks of papers in the mail. And then I had to go through and parse out all the lab test results and put them in a spreadsheet — just so I could try to look at my own freakin’ health data. And I’m, like … oh, my God, this is the state of affairs in healthcare. It's probably the most important data for me as a human on planet Earth, and it took me like an act of God to get it into a spreadsheet so I could look at the trends on my freakin’ thyroid numbers. The good news is, it's a lot easier now. There are now ways we can do this for people electronically, So you can sign up for the service and … actually, just yesterday, the federal government made some rule changes that are going to make it required by law that these healthcare software companies make it easier for people to do what our app does. So we can sync up all your data now electronically. And within a few minutes, we can put together all your blood work and give you some really nice charts to work from. Actually, you'll have something that's probably 10 times more powerful than your doctor does, because we put all your history back together — even from the providers that are long gone, but they still have your medical data. And then what we also focus on is helping people measure their lifestyle choices. And so we integrate a blood pressure monitor and your nutrition logs from MyFitnessPal. So you can start to make lifestyle modifications, and quantify it, and then see if it moves the needle on the labs. That’s kind of like the way we put the feedback loop together for people.
Lauren: So what year did you actually launch Heads Up Health? How long has it been around?
Dave: I had the idea as far back as 2011. I remember working on it in my spare time. I still have some of the original sketches I wrote for the user interface. I think we actually started writing code in early 2015. I was still in the corporate world full-time at that point. It took us about two years to get something that we could launch as a beta. It was just kind of like a hobby at the time. I was, like, okay, we'll put it out there, and I don't care if anybody uses it. It's just something I needed to build; I had to scratch an itch. So threw it out there in about 2017.
I was, like, whatever … hopefully somebody sends me an email (a nice email), and says this helped them. And that was pretty much my only criteria for success.
I didn't go in there with a ton of expectations to do much with it. And then it started growing. And people started using this to self-analyze their health. It fills up an important gap because your doctor has a limited amount of time to look at your health records when you come in the office. They’re not going to sit at home and look for patterns. And they're not going to go on PubMed and research stuff for you. So people started using it, and then it just kind of took on a life of its own. So we've been at it since since 2015. Sometimes quickly, sometimes slowly.
Lauren: Yeah, it's really wonderful. So at this point, you’re very well established. We're going to share at the end of this interview where people can find you, but it's really exciting news for people who are sick of carrying around a million pieces of paper and can't find their old test results, and things like that. Can you tell us if there are any trends that you're noticing in this area of healthcare, in this concept of the collection of medical records? What are you seeing that are trends that are cropping up now in 2020?
Dave: Well, I think that you see an incredible amount of people who are very comfortable starting to go on social media and finding communities where they can share ideas. I think that can be very powerful. It can also be maddening. And again, that's why it's helpful to have some data, so you can put your BS detector on and decide … okay, is this something I want to try or not? But people are becoming incredibly comfortable with the idea of going out and researching health solutions on their own. I came back from the Consumer Electronics Show in Vegas, and all the big tech companies, all the big healthcare companies, are saying the same thing: The power dynamics in healthcare are shifting to the consumer. Because it's so easy for the consumer, quite frankly, to get access to digital health technology and data to understand their bodies in ways that are actually quite powerful. And they can see the 24/7/365 physiological changes in their body with an Apple Watch and a scale and a glucometer. And they can go order their own lab tests online for $50 – if the doctor won't order your fasting insulin test. So it's really a shift of power towards individuals. And then I'm equally excited about the technology that we can just get access to, like a simple heart rate variability test.
That's something you used to have to go to the hospital to get. And now I can buy something for $29, and get incredible HRV data.
And people now know what HRV is. It's not just for Olympic athletes anymore. People are, like, hey, okay, if I do X, my HRV numbers go up and I feel way better. Those are the trends I see. And I think they’re super helpful. We need this now more than ever, because so many health issues that we're dealing with are a result of lifestyle choices.
Lauren: That’s such a good point, yeah.
Dave: If we can learn how to reverse the bad choices that got us sick in the first place, which we can now do, that’s an exciting trend.
Lauren: Absolutely. Well, and I think this idea of individualism in healthcare … that’s the one that we're seeing … as you're saying, people being able to find communities online. It is so exciting. So are you working on any new products or technologies related to Heads Up that you can tell us about, as well?
Dave: Yeah, we just launched a version of Heads Up for healthcare professionals and coaches and nutritionists and functional medicine doctors and naturopaths. These are the types of practitioners who are actually quite interested in seeing your data. They're not going to dismiss it when you come in with a spreadsheet, and they do want to see your blood sugar readings and your HRV data and your deep sleep numbers, because they operate in a different model. So we just launched a version that is available to health coaches and functional doctors, where they can connect to their client’s profile on our system, and provide interpretation and coaching based on these numbers. So that's a product that we just launched. And then we're always on the lookout for the coolest new health tech. So we integrated the Oura Ring, we integrated the Keto-Mojo Meter, we just integrated the Biosense.
Whenever there's a cool device that helps people understand their body, we plug it in so that it shows up on your dashboard.
So, we're always on the lookout for cool stuff there.
Lauren: Very cool. And it's great that you're integrated with so many other products, which makes it very easy for people to integrate into their lives, as well. So, can you tell listeners where they can access Heads Up Health and your services?
Dave: Yeah, of course. We're online at HeadsUpHealth.com. You can try out our software for free for 30 days; we don't require a credit card at all. You can try everything, and if you like it, you can subscribe. And if you don't like it, fine … you can just go back to the spreadsheet!
Lauren: Yeah, go back to those analog days!
Dave: Yeah. So try it out. You can learn a lot on on our website. We have a podcast where we talk about how to interpret all these numbers, like, what's a good HRV number? We have our own show, called Data-Driven Health Radio, where we bring on experts to help demystify the numbers for people. And we write a lot of blog content to help people understand their numbers better. And I'm always reachable at Dave@HeadsUpHealth.com.
Lauren: That’s awesome. Is there anything else you'd like to share with us before we sign off for today?
Dave: No, I hope this was helpful. And thank you for the opportunity.
Lauren: Absolutely. Thank you so much!