The MacArthur Foundation named 67-year-old Baltimore artist Joyce J. Scott a 2016 Fellow -– an honor that comes with a $625,000 "genius grant" and international recognition.
Guest Host: Christina Bellantoni
New consumer technologies are making it possible to build data-rich profiles of your body and its day-to-day and minute-to-minute operation. Smartphone apps allow you to track your jogging routes and speed. Smart watches and other gizmos, like Fitbit, Jawbone and the Basis watch, compile detailed information about sleep patterns, heart rate and the number of steps you take each day. Tech Tuesday explores the “quantified self,” a movement to harness personal data to increase healthy living.
- Anish Sebastian Co-founder, 1eq; an organizer of the D.C. Quantified Self community
- Amelia Greenhall Programmer at a start-up company in San Francisco and an organizer of the San Francisco Quantified Self meetups
- Jason Levine M.D., Staff Clinician, National Institutes of Health, Center for Cancer Research, Pediatric Oncology Branch
MS. CHRISTINA BELLANTONIFrom WAMU 88.5 at American University in Washington, welcome to "The Kojo Nnamdi Show," connecting your community with the world. I'm Christina Bellantoni of the PBS NewsHour, sitting in for Kojo. Coming up this hour, do you know how many steps you take in a day, what your heart rate is, how many hours of sleep you get each night?
MS. CHRISTINA BELLANTONIIn increasing numbers, we are tracking all sorts of physical and medical activities to improve our own well-being. The loose-knit but thriving quantified self movement that began on the West Coast a few years ago has spread across the country. Technology is helping it grow. The simple pedometer that measures how many steps you take have been surpassed by electronic watches, bands, and apps that help collect and analyze personal data.
MS. CHRISTINA BELLANTONIBut there are serious questions about privacy and how to harness the data to actually improve your health. Joining me for this Tech Tuesday are Jason Levine, a physician and staff clinician at the National Institutes of Health, Center for Cancer Research, Pediatric Oncology Branch.
MR. JASON LEVINEHowdy? Thanks.
BELLANTONIThanks for being here. And Anish Sebastian, the co-founder of 1eq and an organizer of the D.C. quantified self community.
MR. ANISH SEBASTIANHey, how's it going? Excited to be here.
BELLANTONIThanks. And joining us on the phone from San Francisco is Amelia Greenhall. She's a programmer at a startup company and an organizer of the San Francisco quantified self meetups, and she keeps tabs on every book she reads each year.
MS. AMELIA GREENHALLHey, everyone. Good to talk to you.
BELLANTONIThanks, Amelia. So let's dive right in. Each of you began this journey, self-tracking in different ways and for different reasons. Tell us how you got interested in collecting data by your own activities, and we'll start with you, Anish.
SEBASTIANSure, absolutely. Yeah. I mean, you know, I started this entire process just for self-knowledge, right? It was in -- it was just a curiosity, and the whole notion here is how do you know and learn more about yourself without actually looking at some kind of data, right? So it started with just, you know, like jotting down notes here and there and sort of noticing some patterns here and there.
SEBASTIANAnd then after that, it grew more into getting a Fitbit or some other type of pedometer. And then eventually I just went a little crazy and decided, why not go all crazy with it? So, yeah. I mean, that's -- yeah. For me, it was just a personal curiosity of mine, and now it's grown much more into -- I just fundamentally believe in this big movement that's going on right now, and I think it's going to drastically change health care in the future. So...
BELLANTONIAmelia, how about you? Out in San Francisco, this has been a trend for a while. How did you get started?
GREENHALLI think I got started by -- I was always tracking the books I read. And then in 2007, I got more into analyzing the data when I started on the experiment to lose weight. And so I started tracking every day, and I started learning about doing different ways of looking. I started a lot of stuff that I wanted to change.
BELLANTONIAnd, Jason, how about you?
LEVINEFor me, it was mostly just that back in, I don't know, 2009, I found that I was overweight. I had a new kid. I had a history of heart disease in my family. And it was just this moment where I realized I had to make a change in my life, and I needed to start exercising. So I started to look for ways that I could exercise with my kid. It was probably within a day or two that somebody on our little local neighborhood Listserv advertised a jogging stroller that they were giving away.
LEVINESo I was like, hey, I can throw in a jogging stroller and run. And, I mean, I'm a physician. I'm a scientist. You know, it's a science-driven field that I live in, and then all my research is in big data. So I said, how can I start to track this? If I -- I can't improve if I can't track. So it was within the first year of Apple launching the App Store for the iPhone, and I realized that I have this sort of cool device in my hand that had GPS in it, and maybe there was an app to track it.
LEVINESo I found RunKeeper. I started tracking every one of my runs, started watching my improvement, and it just became a total sort of addictive thing for me, just getting the data, seeing how it improved, seeing how differences in things that I did were reflected in all of the different things I was looking to change, either my weight or my health or my speed when I was running or my race times. And it has evolved now so that I track all sorts of things. I track the number of steps I take. I now have sort of a cool watch that does my heart rate all day, you know? It's all that kind of stuff.
BELLANTONIWay beyond your pace, right? And by the way, you're wearing a T-shirt that says, will run for data. I love that. And so for those of you who are listening who haven't used, you know, Fitbit, like Anish mentioned, or, you know, RunKeeper, I use the Nike Running app, basically. You turn it on. You have it with you. It knows from your GPS location how far you've gone, what your pace is. It can track the weather.
BELLANTONIIt asks me how I feel after each run. And then, of course, you can share this with your social network. So we're going to bring in our listeners, who can join our conversation by calling 1-800-433-8850, emailing us at email@example.com. Of course, you can always get in touch through our Facebook page or send a tweet to @kojoshow. So is this a self movement, a solo movement, or is this sort of a group movement? It sounds like both of you have been involved with others in tracking this data.
SEBASTIANYeah, yeah, sure. I mean, I think it started off as a self movement, right? So, you know, this is when, you know, people like Jason, very smart, Amelia, that were essentially hackers, and they're like, yeah, I want to learn more about myself, and the products were in there or the tools were in there to share with other people or, you know, share with a group of people and do some sort of -- you know, something else with it other than, OK, here's my data, right?
SEBASTIANBut what's interesting, though, and what's happening now is that's changing. You know, more and more products are coming out that are much more usable. It's not simply for the early adopter like smart people or Ph.D.s or, you know, computer engineers. It's also for your average individual. I mean, it's not quite there yet. But at the same time, you know, I think I saw a statistic like something like 30 million-plus have some tracking app or device. So, yeah. I mean, I think the movement has gained some momentum here.
BELLANTONIAnd you don't necessarily have to have a device, right, Jason?
LEVINEWell, no, and I was going to make that point. There's some data out there on who's self-tracking and what they're doing, and probably the best data set comes out of the Pew Research Institute right now. Susannah Fox, who's a researcher based here in D.C., they included some self-tracking questions in their most recent national questionnaire. And what came out of it is that depending on how you define self-tracking, seven out of 10 Americans are self-trackers.
LEVINEAnd one of the things that they used to sort of elucidate what that means 'cause that number's stunning, right? Seven out of 10 people on the street are self-tracking, but it literally depends on what you use for the definition of self-tracking. And one sort of funny anecdote that comes out of it is that people consider themselves self-tracking if they have a "pair of skinny jeans" that they know that they fit into, and they're happy.
BELLANTONIIn the back of the closet, and you move them forward.
LEVINEAnd then if they don't fit into their skinny jeans anymore, they know that they have to sort of be mindful of what they're eating or their exercise habits or whatever, and there's no reason not to count that in this. It's a way that we all just sort of become more mindful of what we're doing and how we're doing it with goals in mind, and the data is just useful to the utility of achieving those goals.
BELLANTONIAnd not just weight loss either. You know, you've got the same Pew study. Forty percent of the people in that said that tracking led them to ask their doctors new questions or to even get a second opinion from a doctor. So, Anish, what are we seeing in that sense? Are people changing their health and not just trying to lose weight?
SEBASTIANYeah. I mean, Dr. Eric Topol, who's the sort of the luminary in the field when it comes to this kind of stuff, he wrote the book that's, you know, our bible, to say. You know, one of the things he said is that, nowadays, I'm prescribing -- I tend to prescribe a lot more apps than I do actual, you know, actual sort of prescriptions or medications. And that goes to the point that there's also a lot of behavior change that can happen just through the sheer act of monitoring and tracking data.
SEBASTIANI mean, I think the data are still a little early to make any huge conclusions here. But, yeah. I mean, I think that's -- the physician's role is changing here, you know? They're looking at the data, and they're prescribing apps in a lot of cases and saying, you know, I want you to do this, you know? So -- and I think that's just going to change more and more as you look into the future, so -- we have a doctor in the studio here, I forgot. So...
SEBASTIAN...maybe I'm not the right person to answer the question.
LEVINENo, that was great.
BELLANTONIWell -- no. What are you seeing? How is this trend evolving?
LEVINEWell, so I don't see this in my medical practice just because I'm a pediatric oncologist. This is not sort of...
BELLANTONIThey're not using iPhones as much.
LEVINEThey're not using -- and they're not self-tracking as much, although, I mean, what needs to be said is that all of this technology enables families to have a better sense of longitudinal care. But for me, just sort of if I take a step back and put on my general practitioner hat, this data is awesome, and it scares a lot of physicians because it's dirty data, and you don't really know how to normalize it, and you don't know how to compare it, and you don't know whether or not it's actually sort of reliable.
LEVINEBut in the end, to me personally as a physician, it's much more useful to think about data sets that encompass 365 days than the one day a year that I see you and you tell me how you've been for the last week, and I get your blood counts on that day. And so, I mean, you know, they're different data sets, and you use them for different things. But the self-tracking data could be an awesome asset to the sort of relationship a patient has with their physician and their ability to help their patients make changes.
BELLANTONIAnd we're going to get at how you sort of meld all of that data together, Jason Levine, in just a moment. But we want to hear from you. What device or app are you using to track yourself? What data are you collecting about yourself? Join our conversation. Call 1-800-433-8850. Email firstname.lastname@example.org. Send us a tweet to @kojoshow. And we're going to go to Tanian (sp?) from Woodbridge, Va. Hi, Tanian. Thanks for joining us. We're going to keep talking.
BELLANTONIWhat are your favorite apps?
SEBASTIANMan. So there's something out there called the -- and I was actually just talking to Jason about this -- called the Misfit Shine, and that's really cool.
SEBASTIANYeah, the Misfit Shine, right? And it's really cool because what they did was they actually did a survey, and they gave this out to a few folks and said, would you wear it? Didn't even tell them about the fact that it was actually a pedometer. And majority of them said, yeah. Why? Because it was just very cool, and it just looked like -- it was like a precious metal, you know? But it turns out also there's a whole bunch of other stuff. So it's not -- it hasn't come out yet, but I've already preordered mine, and I'm looking forward to it. But, Jason, I mean, what's your favorite stuff?
LEVINETo me, the interesting place here and sort of what informs my favorites is that I think we're moving into another phase where the data is one thing, and how you present it to the person who's consuming it is another. And what, to me, represents that really well is an app -- well, a watch and then the online app that goes with it called the Basis, and I'm wearing mine now. And what they're...
BELLANTONIAnd it looks just like a regular watch.
LEVINE...but it has, I think, like six sensors in it. It does heart rates, skin temperature, skin galvanometry, which is technically sweat, ambient temperature and pedometer. And it combines all of that data into what they visualize in the interface as goal. So you set a goal, and it does the sort of big data computation on the back end to help you achieve those goals. And some of those goals are just tied to one of the sensors, like 10,000 steps a day.
LEVINEThat's only tied to the sensor, to the pedometer. But other goals like higher quality sleep, well, they have great sleep algorithms that don't just do what sort of the Fitbit or the Jawbone do, which is are you moving? 'Cause that's what a pedometer can sense. Instead, they use your skin temperature, your skin sweat to say, are you in deep sleep, are you in shallow sleep?
LEVINEAnd they can really give you a sense of what the quality of your sleep is. And, to me, that represents where we need to be moving 'cause, in the end, everybody is going to have these cool data collection platforms. But what we need more of is great ways to visualize that data and turn it into sort of common, consumer-level ways to achieve what they want.
SEBASTIANYeah. I mean -- sorry. I didn't mean to interrupt you there. But let me just chime in here. Absolutely. Absolutely. I mean, there's a lot of data being collected, right, and the question is what do you do with the data? And it's not just what do you do with the data. How do you translate that into value and action, right?
SEBASTIANHow does that -- what do I need to do now, now that I'm collecting all this data? And, really, I mean, that's a question that we're trying to answer with our company, 1eq. And so, I mean, I think that's the next big thing here 'cause data collection is happening. The next step is what do you do with it? So...
BELLANTONIWe're going to keep talking about that. Amelia Greenhall out in San Francisco, what is your favorite app for tracking your quantified self?
GREENHALLYou know, I like just simple spreadsheets and paper the most, as unexpected as that might be, because I find it the most customizable.
BELLANTONIInteresting. Do you use, like, Google Spreadsheet, or do you write it down?
GREENHALLI -- some things I write down if I'm not going to be tracking them for a long time. But I'll put them into Google Spreadsheets, especially if I'm sharing the data with somebody, and then make quick graphs. And then once that's done, I'll use some programming languages to analyze it or graph it or do data visualization from that.
LEVINEWell, and I have to say that's awesome. I mean, like, it's funny. Give it a shout-out to my wife who says there's no problem that can't solved with the spreadsheet. Like, it is the most extensible platform that you can have to throw your data in and do what you want with it rather than what the company that has sort of garnered the entire data collection and visualization experience wants you to do with it. You...
GREENHALLYeah. I think it's so important to be able to customize it exactly to your goals, like -- and not what maybe a device makes some assumption about your goal is to lose weight or you want to focus entirely on calories or something. A lot of the pedometers kind of tend to make that assumption about people. I think that what you're saying about the basis, Jason, is really important is that it's kind of a step towards letting people customize their own goals and be shown back the data in ways that's meaningful to them.
BELLANTONIWe'll continue this conversation and talk to some callers after a short break. Stay tuned.
BELLANTONIWelcome back. I'm Christina Bellantoni of the PBS "NewsHour," sitting in for Kojo Nnamdi. It's Tech Tuesday, and we're talking with three experts about the quantified self movement of tracking your health information using technology. You can join our conversation by calling 1-800-433-8850, email, email@example.com.
BELLANTONIGet in touch on our Facebook page or send a tweet to, @kojoshow. And, of course, feel free to send us your fitness statistics. Right now, we're going to talk to Ben in Washington, D.C., who is a college student and would like to know about all these devices, what do you do with them. Hello, Ben.
BENHi. How's it going?
BELLANTONIGreat. Got a...
BENOh, yeah. So my question was, like, if -- I actually have a Fitbit myself and I use the app, and I also enter my weight and I track my steps. So that's pretty cool. But I also have a Withings weight. And I was wondering, like, if I have all of these things, how do I, like, put it all together? What do I -- like, if I can look at all of the data together.
SEBASTIANYeah, sure. I mean, I'll take a stab at this one. Yeah. So, I mean, let me sort of expand the question here a little bit. So the question is sort of -- all right. So I'm doing, A, with the Fitbit, you know? Maybe I like the jawbone. I mean, I'm tracking my sleep through my jawbone. I'm using my Withings for, you know, for tracking my weight. Then you have a situation where you have 10 apps on your iPhone, and there's, like, no way to, like, you know, it gets very confusing.
SEBASTIANSo that's why I think, right now, there are a lot of sort of very good, useful tools that consolidate this information provided in one dashboard. But on top of that, though, I mean, consolidation itself is great. But the second question, the other half of that is, what do you with all the data, right? Can you see correlations between the two? Can you see how one thing is moving in relation to the other?
SEBASTIANAnd can I actually act on something that's coming out of this data? And, you know, that's something that I'm working on right now with the startup that I've started called 1eq. I don't want to be, you know, too much of shameless plug here. But feel free to check it out. But, yeah, I mean, that's a big question. That's the big question.
SEBASTIANAnd there are other companies out there, too, doing the same thing. I think there is a lot of venture money going into the space trying to answer that question. You know, I think there's literally billions of dollars going in here. So it's a huge question. And I think that's -- whoever figures that out is going to have a lot of solutions for a lot of people. So...
LEVINEAnd just to expand on that a little bit, there's -- I think of your question with two different answers. The first is, how do you, yourself, visualize all your data together? Unfortunately for you, there's actually a platform that, if I understand all of the different things that you have, will take all your data and then give it to you in place. And that's what's called a Health Graph. It's the API that lives behind RunKeeper.
LEVINEThey have partnered with a bunch of people to allow those people to store data in their database, essentially. And Fitbit and Withings both feed into the Health Graph. So if you go to RunKeeper and sign up for RunKeeper, even though you're not using their app and even though you're not tracking your runs, you can then connect to your Withings account and your Fitbit account to it, and it will pull your data in and show it to you all in one dashboard.
LEVINEBut sort of the bigger and broader answer is that right -- that answer sort of depends on the goodwill of one company, right? And to me, the -- it's more important to start thinking about this as, how do we encourage this as a general model? How do we encourage all of these private companies to really be open with the data that they're collecting about you? 'Cause in the end, they're not collecting about you. You're collecting it about you, right? It's your weight. It's your step count. It's your everything.
LEVINEAnd I'm a big believer in the fact that you should be sort of the ultimate governor of your own data and decide where it goes and what it -- and how you use it and which should include things like sharing it with you doctor. And it should include things like sharing it with your social circle. But it also should include things like putting it into a third-party data visualization application that can literally take your step count and you weights and all of that and turn it into how do you lose weight.
BELLANTONISo Lynn in Fairfax Station gets something that is actually one of my favorite apps that is not exactly about tracking fitness. Zazen Lite is an app that helps you track meditation. It just has a few bells you can set it to -- maybe it's five minutes or 10 minutes, and it's really good for, you know, when you need to calm down -- journalism world can be crazy. So, Lynn, you wanted to talk about your thoughts on breathing. Go ahead, Lynn.
LYNNYeah. I have two favorites. I'm a counselor, and I work for Prince William County. And one of the apps I like is done by HeartMath, and it's actually an app you have to buy a little adaptor for to put on your iPhone. But it's called HeartMath, and, well, what it does is it teaches you to increase your heart rate variability.
LYNNAnd they found that after you have one heart attack, if you can increase you heart rate variability, your chance of having a second one go down. And also, they've tested it for depression and anxiety, ADHD and things like that. So when you're increasing your heart rate variability, it really helps you advance your health.
LYNNAnd the other one -- now that one's 99, and the other one that's free is Breathe2Relax. And I found that from my clients on both the Android and the iPhone. And that's a free download, and you can set the inhale for five seconds with no pause and the exhale for five seconds with no pause. And that's how you can help train yourself to increase your heart rate variability. And they have tracking on how stressed you are on both of those apps. So those are my two, and I frequently give the information out to my clients.
BELLANTONIThank you, Lynn. So, Amelia, I'm curious to hear from you. We talked -- some people say that self-tracking is empowering. It lets you take charge of your life, make your own decisions about wellness and fitness. You know, do you feel that way? How do medical professionals like Jason and others fit into that picture?
GREENHALLI definitely feel that it's empowering. I like the idea that I am -- I'm able to take an idea, whether it's just something that I've read from studies like that, you know, meditating will make me less stressed out or kind of explain different ways to eat. And then instead of just, you know, picking a random diet book off the shelf and saying, oh, this one out of the many ones is going to be the right one, being able to try things and then see if they're working.
GREENHALLSo in that way, I find it incredibly empowering 'cause you're able to design your own experiments and find something that you think works that you want to test, and then test it and find out if it does work.
BELLANTONISo -- and you can join our conversation. Tell us what you're health routine is, and how you're keeping track of it through your devices or hardwired on spreadsheets. You can call 1-800-8 -- sorry -- 1-800-433-8850. Email, firstname.lastname@example.org, or send a tweet to @kojoshow. We actually have a few tweets. And Nicholas weighs in, saying he likes the Fitbit Flex wristband to track his activity, and he's also using the Fitbit dashboard and app.
BELLANTONIAnd Angela says that she uses ActiveLink, and even WeightWatchers has an E-tool. A lot of this conversation reminds me of that, back in the day when people were going to WeightWatchers. They'd weigh in on the scale physically every single day and keep track among their peers who were also trying to do weight loss. Is it healthy to weigh yourself every day, Jason?
LEVINEWell, it depends on what your goal is. And it's funny. Amelia is probably the best person to answer this question because she has -- I don't want to tell her story. But she has sort of a fascinating story she told at some QS meetups on how she weighs herself every day but then turns that into her own data set that helps her motivate. So, Amelia, I'll leave it to you to tell that story.
GREENHALLYeah, sure. So since 2007, I actually have been weighing myself every day. And instead of looking at the day-to-day number, which can jump around, just, like, how much (word?) you ate the day before and other factors, I occasionally will look at a trend line that is kind of, like, plotted a smoothed out view, since I've seen this, like, very, like, jaggedy (sic) every day, like, oh, no, something different is happening. You see this very good kind of a step-back overview of how you're doing, like, yes, I'm not -- I'm staying flat.
GREENHALLI'm -- yeah, I'm staying at my goal or, oh, my goal is to lose weight, and I'm actually making progress even though it's really, really slow. And so maybe from 2007 to 2009, I used the -- tracking my weight and watching the graph every day as a way to see if my experiments were working. So I stopped driving. I started biking everywhere. And then I saw that I was losing weight, and I changed how I ate.
GREENHALLI started eating a lot better and I saw that was working. I tried some other things that didn't seem to work. So for me, it's been a very healthy process. It's kind of like, now, there's this early warning system. Like if I see in that trend line that my weight is actually starting to change, then I know that, oh, maybe right now, I need to start sleeping more or eating a little better. Maybe I'm getting stressed out.
GREENHALLBut I do think that for someone who's in the past like struggle with an eating disorder or something that weight -- you could -- it could have a lot more baggage that you might want to not track your weight every day if it's something that has a lot of emotional meaning to you. For me, it's just a number and I find that really useful.
BELLANTONIYeah, we're definitely going to return to the question about sleep. But for now, we're going to talk to Mary Ann in Dale City, Va. What do you make of this quantified self movement? Thanks for joining us, Mary Ann.
MARY ANNI think it's great. And I would like to urge two things: One that you market to older people. Don't assume that it's just very savvy, younger people who would be interested in this. And the other thing, on making it as user friendly as possible.
LEVINEWell -- this is Jason, and I could not agree more with that. That sort of fits into what I was saying earlier about feeling like we're moving into a new phase where the nerds amongst us who really do have the sort of prowess to build our own spreadsheets and build our own algorithms and trend lines and things like that. You know, to us, the past couple of years have been really interesting. But to me, the more interesting part is what happens in the next couple of years when it -- when the usability side of it really, really ramps up.
LEVINEAnd you start to see more things like I was talking about with the basis watch where you can plug in simple goals, and all the algorithms are hidden to you. And instead, it's just taking data and it's turning it into actionable sort of steps for you to take, be it in older person or just anybody who really doesn't feel necessarily either comfortable or have the time to put the amount of time that Anish, Amelia and myself and, you know, thousands of others have done.
BELLANTONIAnd it gets back to that idea of community, too, right? You can share that with your friends and your social network, but also maybe your family. If you are an older person, you can share it with your grandkids. It's something you can all do together.
SEBASTIANYeah. The one other point I'd add on top of that is if you look at health care spending, you know, three out of every $4 that's in health care spending is to treat chronic conditions. And most of these chronic conditions tend to be with the elderly, right? So there are a lot of people that are elderly that are already tracking this in some way, shape or form. Think about if you're -- if you have -- if you're diabetic, you're doing your blood glucose test, right?
SEBASTIANSome people are watching their blood pressure. They are monitoring, you know, they're tracking how many pills they take every day. So they're tracking a lot of this data as is. Now, the question is, are there tools that can make it very intuitive and seamless that enable them to do that, right? And that's the next phase here so...
BELLANTONIWell -- and you went right to Betty from Silver Springs. That's her question. She's a type 1 diabetic, and you're looking for an app that might help you with that. Betty, go ahead.
BETTYYeah, I've been using forms called a glucograF that was developed by Richard K. Bernstein who's my doctor and also the author of "Diabetes Solution" and as discussed in that book. And it's a wonderful tool for recording not only blood sugar, but also medication and exercise to a certain extent. There's room for food to at least say when the meal time is. But it's challenging for me sometimes to keep track at this piece of paper.
BETTYI want it handy, so it's just an 8 1/2 x 11 I can fold up. But I'm wondering what apps now that I have an iPhone I haven't using much. And also I'm now supposed to be keeping track about how much calcium is in the food that I eat, in addition to the carb, protein, fat and I don't know what apps there are about calcium levels in foods.
BELLANTONIWell -- and George in Silver Spring posted on our -- or sent an email to us -- that's email@example.com -- asking a similar question, you know? How would you track your health records, your doctor visits, your appointments and all the medications you're taking and the different types of things you need to track?
LEVINESo to start with the diabetes question, I would just say that there are, you know, this is not misusing the word literally, there are literally hundreds of apps in the iPhone app store that...
SEBASTIANActually, the number is 95,000.
LEVINEYeah, there you go.
SEBASTIANSo, you were off by, like, a power of 10. I mean, (unintelligible).
LEVINEYeah, about 100 actually. And interestingly -- and I can't speak to how good any of them are because they are so -- the user experience is so tied to the life of somebody with diabetes that, as somebody who doesn't have diabetes, it's hard for me to tell you whether they're usable or not. Same thing with food tracking. There are some fantastic food tracking apps out there, most of which tie into some nutritional databases that will tell you the cholesterol and calcium and sodium and everything in the foods, and give you reasonably good output.
LEVINEBut sort of that might take away from it, though, is that I chaired two panels at a recent health data conference, Health Datapalooza, and after the -- about self tracking, and after the conference, somebody came up to me, a type 1 diabetic, who is actually a nerd like myself and really knows how to program and how to interface with devices.
LEVINEAnd she said that she has spent a decade trying to get data off of her glucometer 'cause, right in the end, you don't want to have to type your glucose into the iPhone app. You want your glucometer to send that data to something. And you don't want to have to take that extra step of translating data that you're getting off of a physical device into a program to track it.
LEVINEAnd that's the next step that I see is that we're going to have to figure out a good way to get what are currently sort of licensed and regulated medical devices to be able to move data into what's really been essentially a consumer space so that you can do what you want with them, either feed them into an iPhone app or feed them to your doctor or feed them into a greater platform that also takes into account how many steps you took today and what your weight is today and how much sodium you ate from that other data tracking app that you're using to track your diet.
LEVINESo, you know, the answer is that there are a lot apps to do what you want, but I would love to see the next step taken, which is for there to be sort of integrated ecosystems that let the device you're using to measure your blood glucose actually trends with that data to a useful place for you, that works for you with your goals.
SEBASTIANYeah, I know, I mean I agree with everything that he said. If there is a specific app that you're looking for, iBGStar is one that's out there. They're the first iPhone-based blood glucose meter. And you don't have to meanly put it in. It directly records it, and they're the first FDA-approved one. When it comes to nutrition, you know, there's MyFitnessPal, which is huge and Lose It!, which is also pretty big. But at the end of the day, I mean, there still isn't an integrated ecosystem here, which is what Jason was talking about. And that really is what is missing so...
BELLANTONILarry post to our website that he uses eight different devices to track his fitness between Nike Running, the FuelBand, Runtastic, Polar Personal Trainer website and FitLinxx at his gym among others. We're going to get back to lots of other callers. We're going to take a quick break. Please join our conversation. Let us know what apps you like and what you track, 800-433-8850.
BELLANTONIWelcome back. I'm Christina Bellantoni of the PBS NewsHour, sitting in for Kojo Nnamdi, talking with Quantified Self experts about the craze of tracking statistics on everything from fitness to sleep.
BELLANTONIHere with me in the studio are Jason Levine -- he's a physician at the National Institutes of Health -- and Anish Sebastian, co-founder of 1eq and the D.C. Quantified Self community, and in San Francisco is Amelia Greenhall, who is a programmer of a start-up company and organizes San Francisco Quantified Self meet-ups. And on the phone from Reston, Va., we have Claire. Claire wants to tell us about a patent that she owns related to this. Thanks for joining us on Tech Tuesday.
CLAIREOh, I am so incredibly excited because I thought of this in 2000 and felt so strongly about it that I filed a patent application. And what I thought about was this. You know, why should we all have to be thinking about what we eat so carefully? Why can't it be automated? If, you know, we can plug our car into a machine and tell us what function is wrong, you know, then we should be able to do this for nutrition. So I came up with an idea whereby you could put your information in.
CLAIREAnd this (word?) method gives you pushes. Instead of, like, Weight Watchers which asks you to pick, you know, and all of this, it takes the information that you originally give it. I don't like black-eyed peas. I eat at home three nights a week. I have to eat out, da da da da da. I have high cholesterol.
CLAIREIt takes all of that, keeps it, and then pushes the fresh and seasonal fresh foods to you, will generate a shopping list, will inventory your cupboard and, if you want, have the food delivered. But I have been waiting forever to have the piece, and it is in my patent that it is possible to use a handheld device, which is in 2000, you know, I said, it might be a cell phone. But...
LEVINEAnd you are right.
CLAIREYeah, but now, I am so excited about, you know, the watchers and the bands and everything. But every time I look at them, I say, you know, you're missing my piece. OK, you can have all the information you want, but if you don't have something that pushes results or pushes solutions to you, you know, what's it worth?
CLAIRESo the big data would be there, and this would help people, you know, when you talk about $3 out of every $4 are spent, you know, on health care, on remedial -- this talks -- all the diabetics out there listening, you know, it tells that all the people that are on chemo will have to worry about health-drug interactions, all the people that are concerned about their ethnic, you know, requirements, it solves all that. So if I could give you the patent number, I urge you to look at it.
BELLANTONIWe'll let you talk to our producers off air.
BELLANTONIAnd thanks very much, Claire. Appreciate it.
CLAIREOK. It's very exciting.
BELLANTONIYou know, this does raise some interesting questions about, you know, the more you know about your everyday life, the easier it is to improve it. But can it also lead to like a Woody Allen-style, hypochondria? I mean, Chelsea in Maryland is asking about is this really helpful when it comes to big picture health? Go ahead, Chelsea.
CHELSEAHi. Yes, my thought is that with all of the data from all these different apps, that thinking about using it might be a little reductionist. That sometimes doctors, you know, are playing a guessing game with what the big picture statement about your health is from all these different statistics about your heart rate or your glucose or whatever it may be. And I just want to see what you might have to say in response to that.
LEVINEWell, it's funny because in the end, to me, it just depends on the kind of person you are. I am somebody who responds to data. I'm very data-driven. And I know that about myself, which is sort of how I came to this space, right? I was somebody who knew that I needed to make a change and knew that the best way for me to actually actualize that change was to find a place to collect data that would show me sort of where I am today and where I want to be.
LEVINEAnd I sort of like your analogy. I think that doctors, myself being one of them, have to take sort of a much larger view of the data that we're given and put it into context. And that's why I'm really excited about the last caller's idea and about where we're moving in the space where instead of taking single data points, instead we're looking at what you want. What do you want to get out of this data?
LEVINEAnd then, you might not even see the data behind the analysis. Instead, all you see is the analysis. All you see is you are at step A, you want to be at step Z. Here are the steps in between, and your data is telling me that you are now at step C or step D or step F, or you've taken a reversal and now you might need to make a change in your life.
SEBASTIANYeah, I mean, absolutely, absolutely. I mean, ultimately, when -- if this is going to work -- the way this is going to work is it's not going to be big data. When a consumer or patient interacts with it, it's not going to be big data. It's going to be small data -- not even small data, it's like, OK, you have to do step A or you have to do step B.
SEBASTIANNow, behind it, you know, if you'll, like, go behind the curtain there, there's going to be a lot of big data and that's the way this is going to progress. So I mean, I think, right now it's the best stage right now where it is. A lot of big data but how is this going to move forward is through -- OK, here's how it relates to you, completely personalized, completely unique so...
BELLANTONIHow would you personalize -- oh, go ahead, Chelsea.
CHELSEAOh, sorry. I was just going to jump in and say, I feel like what you choose to track really matters. So if you're, like, what you're tracking is what you're paying attention to and it's what you're consciously or unconsciously going to try to be changing. So tracking can be harmful if you're tracking the wrong thing. But if you're tracking things that make you happy or the -- you're getting a lot out of, I think it's a great idea.
LEVINEYeah, it's just going to take some sort of figuring out those balance for yourself.
BELLANTONIYou can all join our conversation, 1-800-433-8850. Tell us what your ideal tracking would be. We got a tweet from Heather to @kojoshow, telling us she has this Baby Connect to track all things baby -- feeding, diapers, vaccines -- and she can share them with all of her health care providers.
SEBASTIANI'll let Jason take this one.
LEVINEI mean, it's the perfect space for, I guess, not self tracking, other tracking. Because, really, if there's anything that you want as a new parent, it's to be able to figure out sort of a routine for your kid and to figure out what you're doing right and what you're doing wrong. And I remember the impulse of tracking every diaper and every sleep-wake cycle of both of my kids and resisting it a little bit just because I know, again, about myself that that might make me a little crazy. But it's perfect because it is a way for you to get control of a situation that intrinsically can feel really uncontrolled.
BELLANTONIA lot of callers and Twitters and an email from Joanna in Alexandria are raising concerns about privacy. So, yeah, what are the dangers of having companies, essentially, own all these health data about individuals who use their project -- products? And does this lead to any sort of pre-existing condition's fear?"
SEBASTIANYeah. You know, and I think that is an extremely important question that we have to address. So one thing that we're doing and -- 'cause ultimately, at the end of the day, it comes down to trust, right? I mean, who do you trust? So one thing we're doing is building out what's known as a Data Liberation Front. It sounds just like the utopian.
SEBASTIANBut the idea there is, you know, if at any point you go, well, I don't know if I'm OK with you having my data. There's a very easy way for you to go in and say dunt. Not only do I get -- delete the data from the company that has the data, but also have a local copy of it with me, right? So, you know, we're doing stuff like that, just sort of tell people that, you know, this is your data at the end of the day. It's not mine, it's not the company, it's your data, and, ultimately, you're the one that has full control over it. So that's important.
LEVINEI mean, it is a really worry, and it depends on the dataset hovering. Like, you know, quite honestly, I'm somebody who doesn't particularly care that fit -- that knows how many steps I take every day because I don't know that there is so much, you know, intrinsic utility to that one piece of data. But RunKeeper knows where my house is, right? Like, I mean, they know where I stop and finish runs, and that's actually a little bit more.
LEVINESo you want to make sure that the companies that are -- is sort of shepherds of the data that you're collecting have strong privacy protections in place for you. And you have to be, you know, each user has to end up being the person who looks at the privacy rules that the company has and decides if they are OK with them, moving forward, knowing that the company could get bought and that data could be shared, right, like if RunKeeper gets bought by somebody...
BELLANTONIOr hacked, right?
LEVINE...or hack or whatever so...
SEBASTIANLike the recent NSA struggles haven't really helped the situation much.
LEVINEWell, I mean, they know where we are at all times so.
BELLANTONISo, Amelia Greenhall out of San Francisco, do you have any do's and don'ts of self-tracking when it comes to privacy?
GREENHALLIt's not something that I worry about too much. I really care about any of the apps or devices that I used being -- having away from me to extract my own data. But I kind of take the answer, like we're being tracked and all the other things that we do, like carrying our phones around and all the emails and things we send. And so just the fact that we're intentionally collecting this data about ourselves doesn't make it any more dangerous than all the unintentional data that's being collected about us as well.
BELLANTONIAnd, Jason, you've tried to get your own fitness data. You've got a story to tell.
LEVINEWell, yeah, you know, not to name companies. I just feel like -- and the way that I came to the -- tracking my own data -- I told the way that I came to sort of the more formal space of getting data and open data and whatnot is that, very early on, one of the companies that I used to track my data released an API, which I was very excited about. For those who don't know an API, it's essentially just a programmatic way for you to get access to the data or put data into the dataset.
LEVINEAnd I started to extract data and very quickly learned that the terms of the API were restrictive enough to say that you could get access to your data, but you couldn't use that mechanism to allow users to move to another platform. And to me, that's sort of the antithesis of where I'd like to see the space go. I would, instead, like to see companies be very open with datasets, understanding that they are the shepherds of other people's data.
LEVINEAnd if I, as a user, want to be able to access my data to move from RunKeeper to Nike or from Nike to Garmin or whatever, that I should be able to do that because with that comes the power that a third-party company can come in and get access to that data with my permission, of course, to do awesome things visualizing it or to help me actualize goals that I have in my life.
LEVINESo, you know, in the end, my story was just that I ran up against a wall of, sort of, policy, terms of service on a way for me to get my data out. And it just helped me really clarify that, to me, the most important thing is what Amelia was just alluding to, that the most important thing in this space is that I have access to my data 'cause it's my data.
GREENHALLDo you think -- were you able to get your data out?
LEVINEYeah. Sure, I can get it out. But I'm -- if I do it in the way that I wanted to, I will be violating their terms of service. So I shutdown the application that was going to allow users to migrate. And -- but, you know, in the end, that's disappointing to me. But it's still a huge step forward that the company has an API that's open, that's completely well-described in a way where users can get their data out. It's just there's restrictions on how they can be used.
BELLANTONIAnd read those terms of service, right, Anish?
SEBASTIANYeah. I mean, I completely agree with that. But the one thing I do have to say, though is, you know, these companies in the Quantified Self space, they tend to be, I think, a lot more open than the health care sort of industry as a whole.
SEBASTIANSo, I mean, you know, they're not...
BELLANTONITech startups and Silicon Valley.
SEBASTIANYeah, yeah, exactly. So, I mean, if you look at your clinical dataset, right, the EHR file, I mean, like there's no way -- or even if there is a way to convolute it, it's impossible for me to get my hands on it, you know? And that's also huge, huge problems 'cause eventually this dataset has to merge in some useful way with this other dataset and -- 'cause that's where a lot of the real value. And so...
LEVINEWell, and it's funny because I was telling Anish outside that that actually was the end result of my experience, was that I learned that those terms of service would prevent somebody from getting their data out of this company and give it to their doctor because there would be no way for the user to then retract it from their doctor 'cause, once it's in the electronic medical record, it's there.
LEVINEAnd to me, that's again antithetical to where I want to see this space go. I would love for all these personal tracking data to be able to enter the more "formal health care space" so that it can be used to help people realize what they want.
GREENHALLOne company that's doing a good job of that, I think, is WellnessFX. They are right now focused on doing broad tests. And then they help you go to a blood testing center anywhere, and then you can share your -- they visualize your results really well. So it not just this, like, terrible single piece of paper with all these numbers on it.
LEVINEA PDF usually.
GREENHALLAnd then they share it with your -- you can share it with your doctors. And I think that medical records heading that way and just being really easily shared is great, I think.
BELLANTONIWell, we've had so many people wanting to join this conversation on Tech Tuesday, which you can keep going by sending emails to firstname.lastname@example.org and talking on our Facebook page, of course, sending tweets to @kojoshow. We have one email from someone who says they don't need technology to self-track. He uses -- here she uses a Day AT-A-GLANCE Diary to keep track of activity and goals, has lost data using gadgets, which, you know, is an interesting point.
BELLANTONIAnd then Kevin from Davison, Mich. says that he's a truck driver with a dedicated delivery route between Baltimore and Michigan, and he keeps a bike on board. And then he uses apps like Google's My Tracks to share information about where he can get a quick, easy workout wherever he's stopping along the way. So lots -- couple of tips coming in.
BELLANTONISo -- and finally, what's the next innovation here? What are we waiting to see on the horizon? Anish.
SEBASTIANYes. It's something that I saw recently that got me really excited was a company called Scanadu. Jason, I'm not sure if you've heard of this one, but they essentially made a tricorder. I'm not even kidding about it. So it's just a very small device that you just scan a body through, and then it has a whole bunch of sensors that you can collect a lot of data with. Yeah.
LEVINEFor me, there's that company that I'm keeping my eye on called MC10. They were originally in the biomedical -- or they originally intended to be in the biomedical device space but have recently released their very first consumer products. It's a helmet sensor. It's a skull cap that has rotational velocity sensors in it and a little light on the back.
LEVINEIt's very simple. If somebody's who's wearing it sustains an impact that's hard enough for them to need to be checked for a concussion, the light goes off. And it's marketed to parents. And, to me, that's the next innovation is the easy devices like that that make everyday things that we're doing simpler to understand.
BELLANTONII think someone to invent an app to tell me if I'm running faster to Rihanna or Beyoncé.
BELLANTONIThank you so much for this Tech Tuesday. Jason Levine of the National Institutes of Health, Center for Cancer Research, Anish Sebastian of 1eq here in Washington, D.C. And out in San Francisco, we've got Amelia Greenhall of the San Francisco Quantified Self Meetups. Thank you all so much. I'm Christina Bellantoni, sitting in on "The Kojo Nnamdi Show." Thanks for listening.
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