Journalist and author Sarah Wildman searches archives, history books and European capitals for her grandfather's "true love" -- a young doctor he left behind when he fled Nazi-occupied Vienna in 1938.
The government has the data and the private sector has the innovators. How can the two join forces to make us healthier and reform the nation’s health care system? Tech Tuesday explores open data, public-private partnerships and how they could improve your health as Kojo broadcasts live from this week’s Health Datapalooza in Washington, D.C.
- Sara Holoubek Founder and CEO, Luminary Labs; Member of the Health Datapalooza Planning Committee
- David Kuller Inventor; Founder of AUX; Winner of the My Air, My Health Challenge
- Josh Rosenthal Co-founder and Chief Scientific Officer, RowdMap
- Todd Park United States Chief Technology Officer
- Bryan Sivak Chief Technology Officer, U.S. Dept. of Health and Human Services
Gimme My DaM Data (Data about Me)
MR. KOJO NNAMDIFrom WAMU 88.5 at American University in Washington, welcome to "The Kojo Nnamdi Show," connecting you with the health Datapalooza at the OMNI Shoreham in Washington, D.C.
MR. KOJO NNAMDIThe Department of Health and Human Services collects rims of data about the nation's health, on everything from Medicare claims to hospital performance. Thanks to a new open data initiative, that data is going public to improve medical outcomes and to lower costs. Imagine if you could look up the price different hospitals charge for a procedure and what their success rates are before choosing where to have your next surgery.
MR. KOJO NNAMDITo make that possible, the government is asking entrepreneurs to take the data and get creative, to develop apps, design Web platforms and even invent new devices. This week, 2,000 health officials and tech developers are gathering in Washington to talk about just how to do that. Today, as we said, Tech Tuesday is broadcasting live from the 4th Annual Health Datapalooza at the OMNI Shoreham Hotel.
MR. KOJO NNAMDIAnd joining us in studios here, so to speak, is Todd Park, United States chief technology officer. Todd Park, good to see you. Thank you for joining us.
MR. TODD PARKHello, Sir. Good to see you.
NNAMDIAlso with Todd is Bryan Sivak. He's chief technology officer with the U.S. Department of Health and Human Services. Hi, Bryan.
MR. BRYAN SIVAKHi, Kojo.
NNAMDIAnd Josh Rosenthal, who is co-founder and chief scientific officer of RowdMap and a budding game show host. Josh Rosenthal, thank you so much for joining us. Josh was the host of the game show today. Tell us a little bit about what you did here today, Josh.
MR. JOSH ROSENTHALWe actually put on a "Family Feud" show, so a lot of people see pairs, being an insurer, some providers, also known as doctors in an antagonistic relationship, and yet, Todd and company have both -- has put out the public data and incentivize them to use it to improve quality and patient satisfaction. And so we had to go head to head and square off and see which team knew more about the consumers they're trying to serve and how to apply that data and achieve these goals.
NNAMDIJust one part of the health Datapalooza taking place here. Bryan, this is the fourth annual, so explain the goal of this two-day event and who besides Josh is here.
SIVAKSo basically, the goal of the event is to get people enthuse about all of the work that's being done in this world of releasing health data and making it available for developers and entrepreneurs, academics, business people, et cetera to do amazing things with the information and really act as a showcase for a lot of the just incredible work that's happening. And so the audience really has steadily grown over the past four years.
ROSENTHALYou know, Todd started this about four years ago. And looking out there today and seeing literally 2,000 people filling this ballroom, it's just incredibly excited to be there to talk about this idea of health data. You have academics and government folks and venture capitalists and doctors, and I mean the list goes on and on. It's been amazing.
NNAMDIAnd you might not be in the ballroom, but you can join the conversation too by calling 800-433-8850. You can send email to firstname.lastname@example.org. You can go to our website, kojoshow.org, and join the conversation there, or you can send us a tweet, @kojoshow, using the #Kojopalooza.
NNAMDISo there are several ways in which you can join this conversation. Todd Park, you have said your goal is to turn the Department of Health and Human Services into a major font of data that fuels private innovation in health care. What kind of data are you trying to liberate, so to speak, and why is this process so important?
PARKSo HHS is just sitting on an enormous reservoir of data, data about the health system, data about medical science, data about public health. It's everything from what hospitals charge to the quality of those hospitals to patient satisfaction, nursing homes to the latest medical science to public health statistics to the relative performance of health care systems across regions to so much more.
PARKAnd it's actually astounding when you really realize the full breadth and depth of these information resources. And, you know, our basic attitude is, look, you know, taxpayers paid for this information, so we should give it back to them, right? In machine readable, easy to download, easy to use. And what's so exciting about the health Datapalooza is that it has showcased a steadily growing array of innovations over the years, just the astounding new products and services and insights that entrepreneurs, innovators all across the country are generating with this data, innovations to improve health and care for everybody.
NNAMDISo, Josh, when the government releases all this health care data, why does it have to look to private entrepreneurs to make it useful to the public? What do private entrepreneurs bring to this equation?
ROSENTHALHa, that's such an excellent question. When you basically have -- you have a choice. You wanna try to do the innovation yourself, the government and innovation business and try to see what happens if you follow along those lines, or do you wanna to create the conditions and, you know, lean into the private market to see what happens. You have more horsepower. You have greater numbers, and you have different ideas which aren't, you know, set in government.
ROSENTHALThere are some significant challenges, though. If you look at, you know, entrepreneurs in the health care space, they fail disproportionately compared to other technology verticals, and there are some reasons why that is. And what's, you know, largely perverse incentives, if you're familiar with this kinda fee for service thing...
ROSENTHAL...or in the olden days, people got paid more if they did more things. It was like bringing your car to a mechanic and it would break down, and they need to fix it, and it'd break down, and they'll fix it, and then it'd break down, and they'll fix it, and it'd break down, and they'll fix it, and it'd break down, and they'll fix it, and it'd break down, and they'll fix it, and it'd break down, and they'll fix it.
ROSENTHALAnd as an entrepreneur, if you'd walk into that mechanic and say, "Hey, I have a great way for you to fix an engine and never have to fix it again." He wouldn't wanna hear what you have to say because it'd hurt his business model because it was perverse. So this really quickly what's so fantastic about what Todd and Bryan and others have done is it not only made the data available but they've created the market conditions for entrepreneurs, like myself and others, to actually be able to create a product, a platform or a business that solves a real-world problem and where people are financially compensated for either improving clinical performance or satisfaction.
ROSENTHALSo that's what the ACA impact is just as important as the open data initiative, and you can't separate the two, and it's fantastic work. They look like mild mannered CTOs, but they're actually Batman and Superman by daytime.
NNAMDISo I came into this with a stiff neck this morning and are you saying that it is possible that there's a private entrepreneur somewhere in this gathering who under normal or old-fashioned circumstances, I would have either asked a friend if they can find someplace or some doctor who can help me, or I would have simply looked up at the list of practicing physicians and pick from that list a name of somebody about whom I knew nothing and about whose record I knew nothing.
NNAMDISo you're saying that among this group, there might be an entrepreneur who can tell me exactly who I need to go to who has a success record of fixing my stiff neck?
ROSENTHALAbsolutely. And there's -- to find that entrepreneur, he may very well or she may very well be in this room and certainly at this conference. There have to be two -- there's two things that you need to do to create the conditions for entrepreneurialism or 1,000 innovations to blossom. And one is you have to make that data available, which they've done a fantastic job at, and two is you have to create, you know, a market that rewards people for solving the efficiency problems or solving quality problems.
ROSENTHALAnd they've done both of those things. It's fantastic. That's one example. And you can think of the questions you're thinking of and what you typically find are these, you know, what we'd call direct to consumer. I build an application based on some data. I put it an iPad marketplace and let's see what happens. And that tends not to work so well right now. What's interesting about, you know, ACA and open data initiative is that, you know, Todd and company have essentially incentivize the aggregators in the health care system.
ROSENTHALThey've transformed them from meaning, you know, from underwriters, people who just underwrite risks and the people who are actually paid now to create clinical outcomes and patient satisfaction at large scale. And those organizations are legacy and have a difficult time navigating from fee for service to pay for performance. And so if you're an entrepreneur and you have a handle on the tech side and you have a handle on the market side, you have access to the data. It's a fantastic time right now. So maybe if you find an ap or maybe an ap is brought to you by your doctor, insurer or hospital.
NNAMDISo that by the end of this broadcast, I can expect my neck to be swiveling normally again?
ROSENTHALI didn't say that. Not only is there an entrepreneur at this show who can provide you with a list of doctors that can take a look at your neck and fix your neck, there's probably an app out there that can both diagnose and give you recommended treatments that you can do while doing this broadcast.
NNAMDII knew that coming to the health Datapalooza would be useful for me. Last month, President Obama signed an executive order endorsing the notion of open data by saying the government has to release data in a format that is machine readable. What are the challenges of putting raw data in a form that's meaningful and useable, Todd?
PARKSo this is a historic executive order that the president issued. And what it basically says along with an accompanying open data policy is that the new default for new and modernized federal data resources going forward shall be open and machine readable. So really usable, easy to find and accessible as fuel for (unintelligible) all while protecting privacy, confidentiality and national security.
PARKSo if you look at the sort of super geeky details and policy, it's really, really cool because what it basically says is to do this, what you have to do is when you're building new IT systems or building new data systems, you have to actually build the data from the beginning to be machine readable in open formats. And if you do that, then when the time comes to actually release it, it's in a readable open format.
PARKWhereas if you actually retrofit the data after the fact to be machine readable and open format, it's actually a lot harder. And so there's a growing amount of excitement actually among CTOs in town who are actually realizing that like they manage the lifecycles of IT systems now can actually -- start managing data as an asset over a lifecycle and actually have it be born with the ability to be shared in open formats and computer readable form, which is super exciting to geeks like us.
NNAMDI800-433-8850 is the number to call if you'd like to join the conversation. What health-related software or app would you like to see developed? 800-433-8850. You can send email to email@example.com. In case you're just joining us, we're talking with Todd Park, United States chief technology officer. Bryan Sivak is chief technology officer with the U.S. Department of Health and Human Services.
NNAMDIAnd Josh Rosenthal is co-founder and chief scientific officer with RowdMap. Can you talk about some of the companies that have already tapped this open health data to come up with new tools for both doctors and patients, Bryan?
SIVAKSure. And a whole bunch of them are actually exhibiting here at the conference over the past two days. One that we've talked about a number of times in the past is a company called iTriage, which was I think one of the original users of government data in the health care space. Basically, they've created an app which does a lot of what we're just talking about. Well, take symptoms that you have, try to triage those symptoms into a potential diagnosis, give you recommendations about things you can do, also lists of doctors that you can go and see, things like that.
SIVAKSo they're one of the original ones. One that was up on stage yesterday is a company called Aden (sp?). I love these guys because, you know, when you look at a massive industry that is sort of ripe for disruption, and I think everybody would agree that health care in many ways is ripe for disruption. The thing that strikes me as being really key for this disruption to happen is a group of entrepreneurs who don't know a lot about the market who see specific problems that they have experiences with and then trying to solve those problems on their own.
SIVAKAnd Aden is a phenomenal example to me of this because the two founders of this company both have the same experience which is they had a family member go to a post-acute care facility -- or sorry. They had some surgery and needing -- needed to go into a post-acute care facility. And when they were discharged from the hospital, the families were basically given a sheet of paper that listed 30 different post-acute care facilities and their name and address and phone number and that was it, no other details or no other data.
SIVAKSo basically, they did what most people would do, which would be to pick the facility that was closest to their home, which turned out to be, in both of their cases, the absolute wrong choice because there were some complications with the procedures. They were not the best facilities, et cetera. And so they had this realization that there was a problem that needed to be solved. And not only that, that there was data that we provided, as the government, that could help them solve that problem. And so they started a company to do exactly that.
SIVAKAnd now they have a really cool Web app that if you need a post-acute care facility, you can literally go on to, put in your criteria, what's important to you. And they will come back to you with a recommendation for what's appropriate for you and your family.
NNAMDIAny favorites you got, Todd Park?
PARKWell, as Bryan knows, I'm actually -- I'm a particular fan of actually a whole bunch of different innovators out there. But the iTriage story, I think, is a really compelling one. So I just wanna dive into that with a little more detail and also because it relates to your stiff neck. (laugh)
PARKSo it was started by an ER doc, who's here, named Pete Hudson and his partner Wayne Guerra in Denver, Colo. And Pete and Wayne got tired of seeing patient after patient and patient hit the ER 'cause they couldn't get the right care at the right time. So as opposed to just getting mad about it, they decided to build this app that Bryan mentioned, iTriage, that utilizes, among other things, data sets from the U.S. government that actually show you where all the health care is delivered in America, right, so where all the doctors, where all the hospitals, working care centers, et cetera.
PARKAnd the iTriage app, you basically punch in your symptoms like stiff neck, right, and then it tells you based on GPS satellites operated by the U.S. government. (laugh) And it's data sets with who can help you that's closest to you that will be the best fit with what's going on with you. And then you can book and appointment with that provider. So it got started very recently, but the app has been downloaded nine million times. It's already saved people's lives.
PARKSo Bob Heffernan -- there's a wonderful piece on CBS "Evening News" a few months ago. Bob Heffernan was actually feeling something strange in the town of Texas. He actually punched in symptoms. It told him to go to a doctor right away who was close by who saw him. The doctor said you were having a stroke. Again, see me right this second. You probably wouldn't be here. And Bob said, well, if I hadn't actually used this app, I wouldn't have seen you. And so I wouldn't be here.
PARKAnd just from an economic impact standpoint, this not just Pete and Wayne kinda coding off to the side in their garage somewhere. iTriage is a real-life company. They've hired 100 people in Denver. They paid folks an average of $100,000 a year, so a lot of great family -- middle class -- a lot is being supported. They're hiring 30 more people actually by the end of this year. They got bought by Aetna, and they're growing like crazy across the country.
PARKAnd so it's this great example of what happens when you take the public good that taxpayers have paid for, i.e. data and GPS satellites, (laugh) and you actually put those assets in the hands of amazing entrepreneurs like Pete and Wayne. They live to create awesomeness, right? They create innovations that literally save lives and create a lot of great middle-class jobs all at the same time.
NNAMDIIt's a Tech Tuesday conversation coming to you live from the Health Datapalooza at the Omni Shoreham in Washington, D.C. We're gonna take a short break, but you can still join the conversation by calling 800-433-8850. How do you think government health data can help change the nation's health care system? You can also send us a tweet, @kojoshow, using the #Kojopalooza. That's a spelling challenge for you. You can also go to our website, kojoshow.org, and join the conversation there. I'm Kojo Nnamdi.
NNAMDIWelcome back. It's Tech Tuesday. We're coming to you live from the Health Datapalooza conference at the Omni Shoreham in Washington, D.C. Talking with Josh Rosenthal. He is co-founder and chief scientific officer of RowdMap. Bryan Sivak is chief technology officer at the U.S. Department of Health and Human Services, and Todd Park is the United States chief technology officer.
NNAMDIWe have a studio audience here with us and we have callers on the phone, but you can join the conversation also by sending us email to firstname.lastname@example.org if you have any questions or comments. We got a tweet from someone who said, "We need to put into medical schools courses that teach what to do with data and technology." What say you, Josh Rosenthal?
ROSENTHALAbsolutely. And not just medical schools, but even MPH and even MBA. And so one of the things we find, we've talked about a couple of examples. If you look at, you know, weather data that's fantastic, the government releases it. You see a fantastic example of innovators and entrepreneurs adopting it and creating great things. Now, when you walk out the door, you know whether to bring an umbrella. Same thing with geolocation. Your phone tells you where to go.
ROSENTHALWith health care data, it's a little bit trickier. There's a series of perverse incentives around it. You see a higher failure rate. It's just -- it's really difficult stuff. And part of that is because you don't have the professional community, whether its doctors or MPHers or even other folks working along those lines, that have not only technical expertise but know how to apply that data to the concepts that you want to create. So, I guess, what I'm saying is that weather is easy to understand. Geolocation is easy to understand.
ROSENTHALThis health care data stuff is rather tricky, and doctors are, you know, largely technicians and they're not trained to do that. Twelve years in organic chem doesn't give you, you know, the expertise to be able to apply this. The same thing on the entrepreneurial side. If you treat it just like it's a direct-to-consumer, you know, example, for every one iTriage, which is fantastic, there's a lot more that don't work partially because they haven't navigated these perverse incentives.
ROSENTHALSo in the business schools and then the MPH programs, teaching them the market forces and how to navigate that is key to seeing this innovation blossom, in our view.
NNAMDIOn to the telephones. We'll start with Daniel in Washington, D.C. Daniel, you're on the air. Go ahead, please. Daniel, can you hear me? Well, Daniel, for the time being, anyway, can't hear me. So Daniel -- oh, there you go. Hi, Daniel, you're n the air. Hello? OK. Daniel, we'll put you on hold until we get that straightened out and then we'll come back to you.
NNAMDIWe got a tweet from Sarah, who says, "What's the motivation for private entrepreneurs to consider the underprivileged when creating new apps and tools with public data?" I guess that's for you, Josh.
ROSENTHALThat's an excellent question, and that's something everyone has to answer for themselves. But ultimately, what's the motivation is at least, in my experience, we've had a few different companies. They've all been successful. We're out using public data, you know, mid-sized revenue for a company, highly profitable. And we only, so far, worked with not-for-profits and people who serve the most at-risk in the population, and we turn down other contracts with people who appear for-profit or publicly driven companies.
ROSENTHALAnd the reason we do that is because, you know, we don't see it -- it's a false dichotomy to say I can be profitable, I'm working the market, and I can also help and create social and public good. We don't see it as a bifurcation. You know, everyone has to answer that question a little bit differently. But the brilliant thing about it is if you just try to do it through a social program or government program, you tend not to get the results.
ROSENTHALIf you actually engage the market forces, incentivize them to help people who at risk or to help people who are, you know, to create specific public and social good for the disproportionately at-risk, you get much better results. Not everyone will respond to that. There's a lot of people out there who are very interested in it. Just to give you one example, that's the disintermediation of public and social good as you see it. You know, last year, Kickstarter gave away more money to the arts than the NEA in total.
ROSENTHALAnd so using these market forces and these kind of ground-up market forces, whether it's public health data engaging entrepreneurs, so even kind of community individuals, is a fantastic way to go. And it's the future of actually seeing results in the marketplace that are profitable enough to sustain a middle-class family, as well as create this public and social good that we've heard these examples of.
SIVAKYeah. So one thing to keep in mind is that pretty soon, affordable health care coverage will be available to literally every person in this country. And so although there is definitely a segment of the market right now that is, you know, underprivileged and that maybe some of these things might not apply to you, literally within months, this is going to be a massive opportunity. I mean, there are 30 to 50 million people out there right now who don't have access to affordable health care, and that's gonna change. And so if that's not entrepreneur's opportunity, I don’t know what is.
NNAMDILet's try Daniel again in Washington, D.C. Daniel, are you there?
DANIELYes, I am. Thank you very much for the comments and, of course, the work that you guys are doing at the healthapalooza. I have two quick comments, one is that I am interested in seeing a -- as a caregiver for my wife for the last six years, a pill management software, I would do everything with spreadsheets, but there is no way to deal with tools very easily.
DANIELI haven't found any applications available, and it will be wonderful for people to do that and then not have to repeat everything back to their doctors or nurses when they came back to say, you know, we're taking these pills, it would just be stored in what's called a CCD, Continuity of Care Document. Secondly, there's something about open data that's missing in a lot of the conversations and that is the difference between what's called human readable that you've mentioned and something called human presentable.
DANIELSo, for example, geeks like JSON or XML data, whereas us humans like HMTL. There's now HTML5 with Microdata that allows technical format in a sense to also be human presentable, and you should consider that as important to open data as just having what are so-called human-readable as opposed to what the rest of us. And then you can take the ICD-10 and prescription drugs and allow people to type them up and have them have the same semantic and interesting capabilities that JSON and XML do.
NNAMDIDaniel, you can't see us, but you should know that just about everybody in this room, including the panel, has been nodding at your suggestions, nodding yes because there, obviously, are a lot of unmet needs here that we would like to get. As a matter of fact, I'll ask you, Todd and Josh and Bryan, where are the greatest opportunities in unmet needs for new products or uses of health data? And what encouragement or warnings would you offer to entrepreneurs who want to tap this data for new platforms of businesses?
SIVAKWell, I think, I mean, there are at least three mega opportunities, and I'm sure many more that entrepreneurs will dream up, as they always do. So one, as Bryan mentioned, you know, we are gonna see this fall millions of new Americans get connected to health insurance, right? And there's a big opportunity to help connect the uninsured to insurance and also to devise new kinds of health insurance that really use data and tech to create more and more value for customers and delivery radically better customer service experience. So that's a huge new frontier.
SIVAKSecondly, there's just an extraordinary array of individual entrepreneurs working with doctors and nurses and patients -- and many entrepreneurs are, in fact, doctors and nurses and patients -- to improve the fundamental care delivery system itself, to actually help clinicians understand where they stand with respect to a particular patient and what to do proactively to maximize the health of that patient or entire patient population.
SIVAKTo get the latest and greatest medical science and evidence-based, life-saving best practice at their fingertips, to actually enable patients to actually get their own health information and take control of their own health care and better manage health and care for them and their families and much, much more.
SIVAKActually, that last point, I think, is the third mega opportunity which is that what has not historically been true is becoming true more and more across the country which is that patients are beginning to be able to get their own data electronically and securely. And then that is just a real life-changing thing. I had daughter -- baby daughter who recently went through open heart surgery to fix a congenital heart defect.
SIVAKAnd, you know, I had the best docs, best nurses, could not have gotten a better set of professionals, but -- and I'm sure that everyone has been through the same experience has a similar story, if I were to describe with you how hard it was to actually get the underlying information about my baby, right, so I could put it together and make sure she's getting the right care, right, and that we're doing the right things, it was impossible.
SIVAKAnd it also probably wouldn't shock you to know that on a couple of occasions, my screw ups in that regard actually put my baby in danger, right? So letting people get their own data, right, their own health record data is, I think, a big emerging ubertrend, and there's a whole new set of opportunities for entrepreneurs to build, for folks like me and my baby, the tools can help us bring the data together and really the best job we can to care for our loved ones and make sure they get the health outcomes that they deserve.
NNAMDIOn to the telephones again. Now we go to Rita in Falls Church, Va. Rita, your turn.
RITAHi, Kojo. I just adore your show. This is very interesting because I was just visiting my daughter this past weekend. And she had graduated from Mount Sinai School of Medicine, and she's back up there now, and she has an MPH. And for the last few years, I have been hearing about this from her continually.
RITAAnd I know that the school up there is definitely into to this and understands the great importance to the patient and also to the practice of medicine in general. So I'm finding your show fascinating. I just left a message on her answering machine that she has to try to hear your show later today on her computer.
NNAMDIYeah, once a mother, always a mother. Rita, thank you very much for your call. But I think Josh Rosenthal has something to say about that.
ROSENTHALHey, Kojo. No, I just want to turn back to -- you had said you want some general advice for entrepreneurs and where's the opportunity. And I'd like to throw out something, you know, a little bit different.
ROSENTHALOne, you know, here's a general: Don't start with the data or with the application or with something cool and glamorous and sexy and then try to put it out there and hope that people will come to it. Start with a specific problem, whether it's a business problem or a social problem or a market problem you're solving. And I also encourage you to start with unglamorous, unsexy stuff that people don't want to dive into. So you see fantastic examples of all sorts of wonderful things.
ROSENTHALThere's just as much opportunity on the other side of the coin where, you know, if we're talking about, you know, subjects that are slightly taboo or just kind of the grunt work, the spade and shovel work that people don't wanna mess around with. One thing that is worth noting along those lines is that, you know, Todd and company have transformed, you know, the existing ecosystem in health care from fee for service to pay for performance, right?
ROSENTHALSo you're taking huge companies that have historically made their money off doing more stuff, you know, selling more food and transforming them into people who get paid on the quality of their food. And so you're asking them to completely transform their business, and you're giving entrepreneurs the data, the access to do that for them.
ROSENTHALSo on the business to business side is something you typically don't hear in those conversations, but they're fantastic in terms of success. They're fantastic in terms of aggregating hundreds of millions of lives very quickly but -- and clearly defining the problem you're solving before going after direct to consumer kind a glamorous glitzy. So I just want to give you another perspective on it outside of what you typically hear in these conversations.
NNAMDIAnd also now joining us here at the OMNI Shoreham is Sara Holoubek. She is founder and CEO of Luminary Labs. She's a member of the Health Datapalooza Planning Committee. Also here with us is David Kuller. He is founder of the acoustics company AUX. But first, I like to start with you, Sara Holoubek.
NNAMDIYou are -- you're from Luminary Labs, consults with companies to help them put innovation into operation. That includes using government health data to create new platforms, new products. What's the potential for technology and innovation using health data?
MS. SARA HOLOUBEKThere's incredible opportunity. When we think about what happens when data is put into the hands of innovators, it's actually good for the patient because we're coming up with solutions that complement existing therapies like drugs or devices. It's also good for the innovator because the innovator typically receives a cash prize while retaining all equity in IP. And it's good for corporate America because there's actually a job creator again getting these companies to start hiring.
NNAMDITalk about, specifically, Ginger.io.
HOLOUBEKGinger.io. So Ginger.io is an early stage company that won the inaugural Data Design Diabetes Open Innovation Challenge which was sponsored by Sanofi U.S. Prior to entering the challenge, they were working on an entirely different disease state. But prompted by this challenge, we asked innovators to come up with solutions that would improve the experience or outcome of somebody living with diabetes. They developed the solution that passively collects data from your cell phone to predict whether you're depressed or not.
HOLOUBEKAnd roughly 30 percent of all diabetics are depressed. They have gone on to not only raise capital, significant amount of capital, win many challenges, but cross disease states and are now developing solutions for Alzheimer's and other areas.
NNAMDIYou mentioned Sanofi's challenge to entrepreneurs in conjunction with this Health Datapalooza to harness data to improve the health of people living with diabetes. This morning, the challenge winner was announced and awarded a $100,000 prize. Tell us who won and what their innovation is.
HOLOUBEKAbsolutely. Connect & Coach by PHRQL enables cost-effective interaction amongst registered dieticians and certified diabetes educators in the place they are most likely to make nutritional decisions which is in the new -- in the supermarket. So not at the gym, not at the hospital but in the supermarket.
NNAMDIAs I said, also joining us is David Kuller, founder of the acoustics company AUX. Another challenge called the My Air, My Health Challenge was to create a way to measure the physiology of how pollution affects people. David, your team won that challenge with a design for clothing that can monitor a person's breathing and tell when that person is impaired by pollen or by pollution. Tell us briefly how your so-called conscious clothing works.
MR. DAVID KULLERWell, we've basically integrated a wearable computer with a stretch knit, silver sensor that can be put anywhere on the body. Specifically, we've strapped it around the people's chest which is an accurate way to measure how often they breathe and how much they breathe. We've coupled it also with a particle sensor, and simultaneously, we know how dirty the air is that you're breathing on a breath by breath basis.
NNAMDII'm looking at it right now. It's blinking and winking at me. What am I looking at?
KULLERSo the green light is showing when I breathe in and out, and the blue light is showing the quality of the air. Bright blue mean it's -- means it's clean. This room is relatively clean. If I just take out a piece of anything that generates dust, you'll see it starts flickering, and...
NNAMDIIt certainly does.
KULLERYeah. And the -- we're also measuring temperature and other things. We're transmitting via Bluetooth to the nearby portable device that's actually keeping accurate logs of all of the air we breathe, and it can be mapped on a GPS basis to see what you're exposed to where and how your body responds.
NNAMDIYeah, because it's not only creating data for the individual who's wearing it. It creates big-picture data about air quality that people can use to avoid particularly bad areas. Explain how individuals might use your device and how they would create data, especially, by doing so.
KULLERWell, the challenge that was proposed to us by the EPA and HHS was to make data collection a people-centric activity. Up until now, most data gathered about pollution is based on fixed sensors around the cities, and the physiological response is based on surveys and less precise techniques.
KULLERWhat we've done is we've made it comfortable and wearable and noninvasive and very inexpensive to the point that the long-term goal is that thousands of people in a given city would be wearing these devices for their own purposes and sharing the data so that, at a citywide level, you can map out where the problems are.
NNAMDIAnd your family was already in the fabric business, it's my understanding.
KULLERYes. Actually, this innovative stretched knit comes out of a family knitting mill in Minnesota. We work a lot with 3M Corporation, and they've challenged us years ago to make cuffs for dissipating static energy so that people could work with microelectronics. So we got very good at knitting silver into elastic fabric. And this most recent fabric that we've developed actually, as it stretches, changes resistance. And so you connect it up to analog to digital, convert it on the computer, and you can see microscopic changes in the body's behavior.
NNAMDIBack to the telephones. Here is Judy in McLean, Va. Judy, you're on the air. Go ahead, please.
JUDYThanks for a fascinating program. I have a question about how I find, through a specific medical search, the most appropriate protocol for my older teeth.
NNAMDIFor your what?
JUDYOlder teeth. In other words, I'm somebody who didn't grow up with fluoride. So I've had a progression of dental care, and their technology has changed, and there are protocols that are obsolete, and there are protocols that are most effective. And I found one, but it's taken me three years of using online and word of mouth, and I'm wondering what would shorten that kind of search, if they could give some directions.
NNAMDIJudy sets another challenge for the Health Datapalooza. But here is Bryan Sivak.
SIVAKI don't actually -- I don't have a great answer for that question. That's actually the first time I've ever been posed a specific question of that nature. But what I would suggest is that there are a number of application providers and developers of Web apps here at the conference today who are developing things of that nature.
SIVAKSo just as an example, there's a company that was mentioned on stage today called ZocDoc, which has been in the business for a few years now of helping connect people with individual physicians or providers, along with ratings and rankings, and then allows them to actually make appointments online and all of that kind of stuff. And they've grown tremendously over the past few years.
SIVAKThat might be one great place to start. I know you can search for specific providers with specific conditions. They -- and then some of the rankings and comments might actually be able to provide some answers to that particular question. But there are lots of things out there that are just starting up that are a lot like that as well.
NNAMDIGood luck with your search, Judy. I would suggest that now that people are developing apps for all of these things, your search is probably likely to be more successful than it would have been a decade ago. But we've got to take a short break. When we come back, we'll be continuing this Tech Tuesday conversation live from the Health Datapalooza here at the Omni Shoreham in Washington, D.C., taking your calls at 800-433-8850.
NNAMDIHow do you think government health data can help change the nation's health care system? You can send us a tweet, @kojoshow, or email to email@example.com. I'm Kojo Nnamdi.
NNAMDIIt's Tech Tuesday, live from the Health Datapalooza at the Omni Shoreham in Washington, D.C., with Bryan Sivak, chief technology officer of the U.S. Department of Health and Human Services. Josh Rosenthal is co-founder and chief scientific officer of RowdMap. And Todd Park is the United States chief technology officer. You can call us, 800-433-8850. What health-related data would you like the government to release? 800-433-8850.
NNAMDIYou can send us a tweet, @kojoshow, using the #KojoPalooza, or simply send us email to firstname.lastname@example.org. We got a tweet from someone who said, "How will our deepest, darkest secrets be shuffled around the cloud? What does security look like?" Todd Park?
PARKSo one thing that's not only important to emphasize in all of these discussions is that patient privacy and securing their data is of paramount importance. And so that's a fundamental principle that guides, I think, all of our work and I think the work of some of the innovators in the space here at the palooza. So when we talk about things, for example, like patients being able to get their own data, right, I mean, that's really literally what it sounds like.
PARKIt's patients being able to go to their doctor or their health system or their insurer and being able to securely download a copy of their own data so they alone can actually get at it and use it to actually take control of their own health and health care. But patient privacy, secure the information is just critically, critically important.
NNAMDIAnything to add to that, Bryan Sivak?
SIVAKNo, I -- you know, we spend a lot of time working on the idea of privacy, working on the idea of keeping data secure. And, in fact, one of the biggest complaints of researchers out there is that it's difficult to access things like CMS data. And the reason that it's difficult to access CMS data is because we want to keep it very secure because we don't want, you know, Mrs. Smith's diabetes records to get out into the public.
ROSENTHALI was gonna say one thing just to keep in mind is that we talked a little bit about this movement from fee-for-service to pay-for-performance, and the data grain actually changes when you do that. And so in fee-for-service, you're talking about an individual claim. That's the unit of exchange in the old world. In the new world where it's pay-for-performance, you're talking about a grain that's by definition population summary aggregate de-identified.
ROSENTHALI mean, a contract, a county, a star metric, et cetera, et cetera. So, ironically, as you move into this pay-for-performance world, you actually lose some of those risks around identification of data. Another thing. They're too humble to point it out, but I'll go ahead and cheerlead for them. If you actually check the CMS site, these guys are doing a lot of work in creating specific, you know, synthetic data set, so -- where you are talking about kind of member-level, claims-level information.
ROSENTHALYou can see a purely synthetic set. The DE-PUF file, the Syn file, is an example of that. And so they're investing, you know, in ways that they haven't previously to make that sort of information available to entrepreneurs who don't have restricted use, access. And that's fantastic kind of thing that tends to be hidden behind the scenes but is absolutely necessary for any innovators.
NNAMDISpeaking of which, Bryan Sivak, you've said the Department of Health and Human Services has at least 1,000 different data sets in its archives and has catalogued about 400 of them. Why catalogue the data? And who uses these catalogues?
SIVAKSo we make all of this information available on our data portal called healthdata.gov. And the idea is really to provide a map, if you will, to where all of the different data sets within the Department of Health and Human Services exist. Now, many of these data sets are published online or have been published online for quite some time. It's just that the, you know, the department is a very, very big place, and they've been kind of spread out over our electronic footprint.
SIVAKAnd so we wanna bring them together and provide a one-stop shop, if you will, for people to be able to find the stuff. It gets used by all kinds of different folks. It gets used by researchers. It gets used by academics. It gets used -- as we were talking about earlier -- by thousands of entrepreneurs out there who finds some utility in this data. And we're always looking for more information to put out there. We -- as you mentioned, we think we have about 1,000 data sets that the department creates or curates or collects.
SIVAKAnd we wanna try to make as many of those publicly available or at least pointed to as possible. One of the things that we spend some time focusing on is prioritizing these efforts because obviously, we could go after some things that might not be as relevant or as an important. There might be some things out there that we really should be focusing on. So we rely on a lot public input for that as well.
NNAMDISpeaking of privacy, let's hear Michael in Arlington, Va. Michael, your turn.
MICHAELHi, Kojo. I listen to the show for a while. My first time calling. It's a thrill. I wanted to ask, earlier a guest is talking about patients having access to data. And with this increased access, can they talk about how secure the data is now? Is it more vulnerable to cyberattacks? And how is HIPAA being updated to regulate against this? And are either of the guests scared about this?
SIVAKSo it's a great question. So, you know, as Todd mentioned, privacy is a huge concern for us, and we do pay a lot of attention to that. We take HIPAA and the Privacy Act very, very seriously. We, you know, I think as more data gets out there, you certainly run maybe a bit more risk, but we do everything we can to try to take that risk into account and to try to protect against it. There are some new developments.
SIVAKIt's actually something we haven't talked about today, which is actually relevant to a question that was called in before from Daniel. We're working on or have recently released, I should say, a few months ago a new specification for this thing called Blue Button Plus. And what that does is it gives patients access to their own data and authorize and secure form for entities that have implemented this functionality. And so this is sort of a second version of Blue Button.
SIVAKBasically, it is pretty much what it sounds like. It's a blue button on a website that when you click it, it gives you your health data. But this new version of it allows you, as the patient, to essentially provide access to that data to trusted third party. So, for example, if -- let's say, I'm a VA beneficiary, and I need to send my data to a third-party provider that might not be part of the VA system, I could theoretically click this button, provide some access to people via a defined mechanism.
SIVAKAnd then that other provider would be able to get my consolidated CDA, which would contain all of my prescriptions, it would contain my diagnosis, my procedures, all of that kind of stuff. And so we're trying to make these things available on ways that are secure but still allow information to flow to take advantage of some of these things.
NNAMDIOne of the bigger complaints about the health care system today is that there doesn't seem to be any correlation between price and quality. In fact, people rarely know the price of a service or procedure until after it's over and they get the bill. Last month, the Department of Health of Human Services released data on what hospitals charge for common services. That data was not widely available before. What difference do you feel that data can make, Josh Rosenthal?
ROSENTHALAnd there's obviously a consumer application. If you're aware of the price for a procedure -- and, more importantly, you can see the efficiency and quality, you know, our ranking of hospitals and also not only how it effects perhaps your insurance and your insurance rate without a pocket expenses that -- it's just like reading Zagat or Yelp that's obviously very applicable. Again, on the business-to-business side, and I know this isn't as cool and sexy as the direct-to-consumer side, but that's the bulk of the market.
ROSENTHALSo as an entrepreneur, you at least wanna pay attention to that. From that sort of perspective, you know, you can literally compare hospitals and their expenditures inside the ecosystem. And so what does means is you can see one hospital down the street as high quality, high efficiency and, you know, very high patient satisfaction. Other hospitals down the street are low on all of those metrics. And you can specifically see patterns of practice and care.
ROSENTHALSo certain hospitals, you know, CMS has done something brilliant on the data side. They created this concept called an Episode. And so you can look and see when someone goes into an ER and then check in-patient or out of patient or home health expenses, provider by provider by provider, one to 30 days after the Episode. So you could create a little app. But to be perfectly honest with you, most people aren't gonna be able to navigate that.
ROSENTHALThe people who are, you know, financing things behind the scenes are incredibly interested in that. And because they've been incentivized, you know, through Medicare Advantage and other reform efforts, to actually put products in the market that are competitive on a cost side, they have to get those cuts from somewhere. And so they're absolutely using that data to try to help people make those choices.
NNAMDIYour turn. We have someone in-house.
HOLOUBEKYeah. So I work a company called Get Real Health. We're a local patient engagement platform provider. And I just wanted to make a comment and question about the federal role that we see impacting our lives and our business. A lot of our provider clients are extremely -- but they benefit from meaningful use and their requirements that have been -- that have required them to purchase software applications like ours for patient engagement.
HOLOUBEKAnd we're excited to be part of Blue Button Plus and offering, you know, getting the patients more involved in seeking their own data because we're in the middle of the provider and the patient community. We want to give the providers the tools that they can push to the patients that'll benefit their ability to deliver care.
HOLOUBEKWe want the patients to be able to, you know, to -- but I guess the question is, you know, what do we need to do to get the patients to actually demand these services from their providers? We can build great tools that have great outcomes. But the next step is really improving uptake and getting the patient to actually seek out the -- their data and ask for it 'cause if they ask their providers for it, then there's lot of companies who can deliver that and make that happen.
NNAMDIAnd if anyone wants to respond, you have only about a minute to respond to that.
PARKSo I think that that's actually a question that a multitude and brilliant entrepreneurs like you will solve. I think what we can do, as the federal government, is like layout the privacy protectors to make sure that patient data is secure in private. We can actually layout policy, as we've done, that encourages health care providers to let patients securely get their own data. We can actually, you know, through participating and convenings, like this Datapalooza, with the private sector, the public sector and Academia, help celebrate what's being done with the data. But we're really, you know, look into the ingenuity of entrepreneurs like you to actually figure out how to make all that ignite.
HOLOUBEKYeah. I do find that the ability for patient to share their data to reputable providers certainly allay some concerns that those providers have about -- and other mechanisms for sharing that. So we certainly support more efforts like that, like Blue Button Plus.
NNAMDIAnd I'm afraid that's about all the time we have, except for this tweet, "Do you see government release data or greater consumer choices driving our focus on preventive care in the near future?" A one word answer.
NNAMDIThank you. That was Bryan Sivak, he is chief technology officer of the U.S. Department of Health and Human Services. Todd Park is United States chief technology officer. Josh Rosenthal is co-founder and chief scientific officer of RowdMap. David Kuller is founder of the acoustics company AUX, and Sara Holoubek is founder and CEO of Luminary Labs, a member of the Health Datapalooza Planning Committee. Thank you all for joining us. Thank you all for being here with us in studio. And thank you all for listening. I'm Kojo Nnamdi.
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