The U.S. Department of Health and Human Services controls a vast trove of information about the American health system, covering everything from clinical trials and drug recalls to health insurance programs. HHS Chief Technology Officer Bryan Sivak is also the department’s “Entrepreneur in Residence,” in charge of “liberating” public health data and making it available to developers, journalists and patients. He joins Tech Tuesday to discuss the future of government data and the health apps of tomorrow.

Guests

  • Bryan Sivak Chief Technology Officer, Department of Health and Human Services; Former Chief Innovation Officer, State of Maryland; former Chief Technology Officer, District of Columbia

Transcript

  • 12:06:42

    MR. KOJO NNAMDIFrom WAMU 88.5 at American University in Washington, welcome to "The Kojo Nnamdi Show," connecting your neighborhood with the world. It's Tech Tuesday. It's a basic promise of the open government movement. If you liberate the data, you can transform the way people interact with government. As the chief technology officer at the Department of Health and Human Services, Bryan Sivak has a lot of liberating to do.

  • 12:07:17

    MR. KOJO NNAMDIHe helps oversee hundreds of public and semi-public data streams from an alphabet soup of government agencies, clinical trials from the CDC, food and drug recalls from the FDA, hospital mortality rates from the Center for Medicaid and Medicare Services, information that could one day change the way we think about health care. It might power new mobile apps and websites to help patients find nearby medical services or compare health plans.

  • 12:07:45

    MR. KOJO NNAMDIIt could help shine a light on government waste and present new opportunities for entrepreneurs, but some of that data could also cause major headaches and privacy concerns. Bryan Sivak joins us in studio. He is chief technology officer and entrepreneur in residence at the Department of Health and Human Services. He previously served as chief innovation officer for the State of Maryland and before that chief technology officer in the District of Columbia. Bryan, good to see you again, albeit wearing a different hat.

  • 12:08:15

    MR. BRYAN SIVAKThank you, Kojo. It's great to see you as well.

  • 12:08:17

    NNAMDIAlways a pleasure. 800-433-8850 is the number to call. Have you used a mobile app or website to access health information? What works for you, and what doesn't? 800-433-8850. Information technology, Bryan, is already changing the way health care is practiced in this country. When I walk into my doctor's office, the doctor doesn't scribble illegibly on a piece of paper anymore.

  • 12:08:40

    NNAMDIHe might carry a tablet computer with him and dig up my records from the cloud. I might use websites or mobile apps to find a doctor in the first place or request information of some sort. Where do you and the Department of Health and Human Services fit in this picture?

  • 12:08:58

    SIVAKGreat question. In a lot of ways, we are trying to act as a catalyst or an enabler for this sort of sea change in health IT. There are any number of departments that work on various aspects of this, and it's everything from encouraging doctors to pick up health technology, to implement electronic medical record systems, all the way through to enabling patients to access their data in a machine-readable and seamless format.

  • 12:09:32

    SIVAKWe are working on elements of payment reform within the entire system, much of which is enabled by information and by data, so it really spans the gamut across the entire system.

  • 12:09:45

    NNAMDIYou've served as a kind of open data evangelist for a lot of years now, first in D.C. government and then in Maryland State government, but health data is in many ways different. It's compared -- that is just different compared to information we typically associate with open government, like traffic patterns or request for building permits. How has health data on the one hand similar yet on the other hand different?

  • 12:10:13

    SIVAKSo, you know, I think it helps to think about the vast categories of health data that are available. You have all kinds of information, for example, around statistics that are collected on an annual basis by the department for the population at large. There's a survey called the NHANES, which is -- has been conducted for many, many, many decades now that is actually the source for the size charts that you see when you bring your kids into the pediatrician and many, many other data points contained there.

  • 12:10:49

    SIVAKSo that's one example of sort of population health-type data. There are a number of other types of information, for example, a list of all of the doctors that are registered in the United States, their specialties and their geographic locations. That's an example of a data set that's useful and interesting. There are new data sets which are being published which surround the quality of providers and the quality of hospitals, and these are all things that are important to really identify and to publish in order to get this information out there to start to change the market.

  • 12:11:29

    NNAMDI800-433-8850 is the number. Our guest is Bryan Sivak. He is now chief technology officer and entrepreneur in residence with the Department of Health and Human Services. What kind of tools would like to see with government data? 800-433-8850. You can send email to kojo@wamu.org, send us a tweet, @kojoshow, using the #TechTuesday or go to our website, kojoshow.org, where you can ask a question or make a comment.

  • 12:11:55

    NNAMDIIf we look at this issue from a patient perspective, the main problem we face when we interact with the American health system is how complex it is. We don't have a very good idea of who does what, of how our doctors fit into a hospital system or an insurance plan, and it's virtually impossible to compare products like health insurance plans, apples to apples. How can your data make this system make sense? What do you think people want from you and your data?

  • 12:12:23

    SIVAKThat's a great question. You know, there are a lot of different things that we're working on here, one of which, you know, our -- one of which actually is a big part of the Affordable Care Act, which is designed to actually make the process of comparing insurance plans much more standard and much easier to do and that, you know, as anybody who's ever gone through the process of trying to figure out what health insurance plan to sign up for, you know, that it's something that's incredibly complex.

  • 12:12:51

    SIVAKI'm thinking back to when I started this job five and a half months ago or so and I had to sign up for health insurance with, you know, the sort of myriad of plans available to the federal government. And, you know, my decision was basically predicated on which insurance plans were accepted by my child's pediatrician and my wife's doctor, right? So, you know...

  • 12:13:15

    NNAMDIYou're right.

  • 12:13:15

    SIVAK...my decision was made not necessarily based on the quality of the plan but who, you know, who was in network. And I think these are things that we can start to help with by publishing some of this information in a much more consistent and orderly fashion. Provider selection is another interesting one. When you think about -- think about the last time you chose a doctor, right?

  • 12:13:35

    NNAMDIMm hmm.

  • 12:13:37

    SIVAKMy guess is that most people out there do this by asking friends, by getting referrals, you know, by talking to people and saying, "Hey, you know, I need a good G.P. Who do I go to?" And, you know, they get a list of names, and they, you know, book an appointment, usually probably taking the first person who's got a slot or is taking new patients. But when you think about it, I mean why aren't we making these decisions based on the actual -- some objective quality measure, you know?

  • 12:14:03

    SIVAKDoes this doctor have good outcomes when, you know, doing cardiac procedures? These are all things that we're really working hard, trying to get information collected and released about these types of categories, so the people can start to make better and more educated decisions about their health care.

  • 12:14:18

    NNAMDII always find it amazing that we, in fact, make so many of our health choices based on the recommendations of somebody in a relatively small circle of people that we happen to know when all of this information, as you pointed out, is at least now available, and we can access it. I like to talk about an example from a government agency that does not fall under HHS, the Department of Veterans Affairs.

  • 12:14:42

    NNAMDIA few years ago, that department created something called a Blue Button, which would allow patients to access their medical records and allow those records to follow them as they receive care from different providers. This was seen as a major breakthrough not just in terms of the experience for patients but in terms of re-engineering what's happening inside the firewall, so to speak. Tell us about that project.

  • 12:15:06

    SIVAKSo the Blue Button is actually incredibly interesting for its potential to reshape the way that the doctor-patient relationship works in a lot of ways. So we are currently on the first version of Blue Button, which, as you mentioned, was developed a couple of years ago, and what the Blue Button does -- it's on the Veterans Administration website, also on Medicare now as well and certain private payers have adopted this -- basically allows you as a patient to go in, log on, click a single button and get a download of your medical history in a free text format.

  • 12:15:42

    SIVAKNow, this text while machine readable is not the most conducive of formats to actually doing interesting things with -- in programmatic ways. It's an ASCII text file, meaning it's just basically straight text. Now, having said that, there are some interesting -- some very interesting applications that have been developed off of this. The one that comes to mind first is an app for iOS devices, for Apple mobile devices.

  • 12:16:14

    SIVAKIt's called iBlueButton. And what it does is actually takes the downloaded Blue Button file and parses it out into a very nice sort of clickable display of procedures, of doctors' visits, of prescriptions, all kinds of things that are going to be useful to a physician when you go to see them. So the change is basically going from -- say I'm in a new city, and I need to go -- you know, something happens. I need to go see a doctor for some reason.

  • 12:16:42

    SIVAKWell, I could go to the website and click this Blue Button and print out, you know, probably a stack of paper that I would have to hand to this provider, and he'd have to sit there and flip through it and try to figure out exactly what's happened, or I can now download it into this app, click a button, have it all beautifully displayed and hand my phone, you know, or my iPad or something to the doctor who can then literally click through and see what's going on.

  • 12:17:04

    SIVAKSo this thing has massive potential. There is in the works right now version two of Blue Button, and what this does is it takes that big ASCII-formatted file and actually makes it into a standardized machine-readable format that is going to be much, much easier for many, many more applications to parse out and display.

  • 12:17:26

    SIVAKThe other thing that it does is it sets up a push and a pull mechanism to allow people to securely send that information to a requesting application. So I'll give you an example, just a sort of something that's similar. You think about when you go to a website right now that -- or a Web application that asks you to sign on with your Facebook credentials.

  • 12:17:48

    NNAMDIMm hmm.

  • 12:17:48

    SIVAKSo you use your Facebook credentials to sign on, and the next step is to say, OK, you will now, you know, give permission to this application to access these pieces of information from your Facebook account, or you don't have to do that. We're imagining a similar infrastructure for your health data, so you would be able to securely give permission to applications to access various components of this thing to do interesting things with it.

  • 12:18:15

    NNAMDIWhy only veterans? Why not me?

  • 12:18:17

    SIVAKWell, VA is one, and then...

  • 12:18:18

    SIVAK...Medicare is available on Medicare right now. And the nice thing about Blue Button version two is that there are most of the big insurance companies right now are participating in this process, so we are anticipating that this is going to proliferate massively.

  • 12:18:35

    NNAMDIAnd this is an example of -- really a good example of open data and government because it's an example of government doing something that could change how the private sector operates.

  • 12:18:44

    SIVAKYeah. That's right. And we're trying to essentially work with the private sector to develop standards that make sense for any number of organizations to implement so that we can propagate this as far as we can.

  • 12:18:56

    NNAMDIWell, Jay in Gaithersburg, Md. seems to suggest that sometimes the private sector doesn't want that. Jay, you're on the air. Go ahead, please.

  • 12:19:03

    JAYYes, very important topic, gentlemen. Bryan, I think you are nibbling around the edges, and the crux of the matter is the huge amounts of money and economy invested and maintained in efficiencies to give you -- for instance, you know, a relative went in, had a hematoma blood clot. It was done digitally by a computer. Doctor comes out in the emergency room, charges $600 to look at digital data that could have been analyzed better by a computer. I got a $10 blood test, you know, at a hospital, at a lab, and it was $150 for the doctor to read it.

  • 12:19:44

    JAYBut the technology exists to tell you exactly what's above normal, abnormal and so forth. So then we're kidding ourselves with all of these nibbles around the edges and information exchanges and so forth. That's good, but if you want to go to the crux of it, you have to have computerized medicine distributed, intelligent analysis. There's no reason why, for instance, you can't stick on your finger something that tells you, you know, whether your heart's working correctly or not, you have a rhythm, blah, blah, blah. I mean, the inefficiencies...

  • 12:20:18

    NNAMDIOK. Allow me to have Bryan Sivak respond because Jay seems to be talking about inefficiencies by design.

  • 12:20:24

    SIVAKSo I'll say a few things. First of all, my dad's a doc, and I think he, you know, he would argue greatly that a machine could take over every aspect of, you know, reading a lab or diagnosing a condition with digital imagery and things like that. I tend to agree, although I think we're probably getting closer -- much, much closer to the point in time where we can have technology do a lot of this, at least baseline work.

  • 12:20:53

    SIVAKBut I think your larger point is actually a very, very good one. And, you know, this is where the department is really moving in the direction of overall payment reform in the system. The incidents that you're describing, where, you know, doctors charge X to read something that maybe a machine could do better or, you know, sometimes where multiple procedures are performed in different locations because we don't know yet that, you know, this MRI was done three weeks ago or what have you.

  • 12:21:23

    SIVAKThese are things that we're trying to address by changing -- looking at changing the incentives in the system to move from a fee-for-service model to a sort of what we call an accountable care model, where we're looking at sort of this whole -- looking at an individual as a whole organism as opposed to individual components that need to be treated.

  • 12:21:44

    SIVAKAnd there is a ton of work actually going on here in this area right now. There is an entity within the Center for Medicare & Medicaid Services called The Center for Medicare and Medicaid Innovation, which is running a number of pilot projects right now to essentially identify new models of care that both improve outcomes and cost less money.

  • 12:22:08

    SIVAKAnd the beauty of this is that if a model is found to actually be actuarially valid in terms of saving money and improving outcomes, the secretary of the department has the ability to instruct Medicare to pay for that as a new model going forward. So there's a huge amount of potential in looking at these new ways of transforming that care deliveries.

  • 12:22:31

    NNAMDIJay, thank you very much for your call. You, too, can call us at 800-433-8850. It's a Tech Tuesday conversation about liberating and protecting health data. Do you use mobile apps to access care or access care providers? 800-433-8850. What tools would you like to see and what tools do you currently -- do you feel currently exist that can help you to that? You can also send email to kojo@wamu.org, or send us a tweet, @kojoshow using the #TechTuesday. I'm Kojo Nnamdi.

  • 12:24:51

    NNAMDIIt's Tech Tuesday, and our guest is Bryan Sivak, chief technology officer and entrepreneur in residence at the Department of Health and Human Services. He previously served as chief innovation officer for the State of Maryland and chief technology officer in the District of Columbia. We've been requesting your calls at 800-433-8850. So here now is Karen in Bethesda, Md. Karen, you're on the air. Go ahead, please.

  • 12:25:17

    KARENHi. I just wanted to say that I've been using Kaiser for many years now. And everything, I do it online. I make my appointments. I email my doctors. I get test results. I can look at past test results. And when I do go to a doctor, if I have to go there for an emergency or whatever, they have everything there, and it's a terrific system. And I don't know why everybody doesn't do it that way now.

  • 12:25:51

    NNAMDIKaren, I'm going to put you on hold, so you can hear yourself being echoed, I think, by Charles in Rockville, Md. Charles, you're on the air. Go ahead, please.

  • 12:26:00

    CHARLESI'm just going to echo exactly the same thing, that we've had it for years. I'm 84, and I have grandchildren. It's just been wonderful. It's so simple. It's a one-stop shop. You can get everything you need. And I have had excellent, outside of Kaiser, specialists on occasion that they cover. So you get the best of care.

  • 12:26:33

    NNAMDIWe're talking about the kind of delivery system, Bryan Sivak, that Kaiser is involved with and that the government is apparently moving rapidly. How would you compare those two delivery systems?

  • 12:26:44

    SIVAKSo at the risk of this turning into an ad for Kaiser...

  • 12:26:48

    SIVAK...you know, I actually have heard great things about the Kaiser system as well, and I think one of the reasons for that is what I'll call a vertically integrated system. You know, they kind of have everything under one roof, and they really do try to look at the patient in this sort of whole patient model. And, you know, so when you think about it from that prospective, their incentives are aligned to try to do a lot of these things in that way. Having everything online, obviously, there are huge benefits to that.

  • 12:27:20

    SIVAKHaving information in standardized formats that their providers know how to access and know how to read has huge benefits to it. And, you know, the beauty of it is not only does it provide better care and a better customer experience which is, in essence, what we're hearing here, but it also lowers costs, right, because there isn't -- there's a lot less friction between those pieces. So, you know, a lot of people are looking at Kaiser as a great model, and there are lots of other experiments that are along those lines as well.

  • 12:27:52

    NNAMDICharles, thank you very much for your call. Karen, thank you very much for your call. HHS has already built a useful page for finding and comparing health insurance plans called finder.healthcare.gov which allows you to plug in your basic info and find out what your health care options are. But that platform is much less complex than the really big project coming down next year as part of the Affordable Care Act, also known as Obamacare.

  • 12:28:19

    NNAMDIBy October 2013, the federal government and the states must build some very sophisticated new tools called health insurance exchanges to help tens of millions of people find health care. I know that this very sensitive, and you may not be able to talk a great deal in specifics, but give us a sense of what needs to happen and why this is so challenging.

  • 12:28:40

    SIVAKSure. So, you know, this really is the centerpiece to the Affordable Care Act, the ability for tens of millions of Americans who are currently not covered by health insurance to actually leverage a easy-to-access and easy-to-use online system to find insurance products. And it's, you know, it's a complicated project because we're dealing with a system that is very state-specific. And so states are building their own -- some states are building their own health insurance exchanges.

  • 12:29:14

    SIVAKAnd we're hoping that eventually all states will build their own exchange. In the meantime, in the period of time that there will be some delta between states that have been able to achieve this and some that haven't, the federal government is going to be building a marketplace of our own. And you know, it's a big project, but it's one that's been worked on in earnest for a couple of years now. And, you know, we are making great progress to having this go live by the beginning of open enrollment on Oct. 1, 2013.

  • 12:29:48

    NNAMDIWhat kind of systems need to able to talk to each other in order to be able to pull that off?

  • 12:29:53

    SIVAKSo there are a bunch of different sort of subsets of this. The main application itself is a -- it's actually relatively straightforward if you think about it from a certain perspective, consumer purchasing application, right? It's a workflow process that you'll go through to enter in some specific information about yourself and your family and then be presented with a list of plans that can be compared against each other that will help you understand how much something will cost and what coverage that entitles you to.

  • 12:30:29

    SIVAKAnd then, you know, just like you would do on amazon.com, a checkout process where, you know, you literally say, you know, this is how I build in, and you're off to the races. Underneath that, there is some complexity. We do have to, as part of this check, for example, eligibility for various tax credits or whether, for example, you might be eligible for Medicaid or other federal programs.

  • 12:30:53

    SIVAKAnd so we do have to make some connections to various other federal entities such as Social Security Administration and the IRS. And these are, you know, very important connections to make. We are working on this with incredible focus on security and privacy because that's obviously critical for this to work the right way. But, you know, everything's going great, and we're working hard on it.

  • 12:31:22

    NNAMDIGlad you mentioned security and privacy because that is the concern of a number of our callers and emailers. We got an email from Jonathan, who says, "Can your guest assure that information given to these apps is assured to remain private? Couldn't an app make changes to its privacy policy? How do your guest suggest we protect sensitive private health information or are current safeguards sufficient?" Before you respond to that, allow me to go to Denylle (sp?) in Washington, D.C., who has similar concerns. Hi, Denylle. You're on the air. Go ahead, please.

  • 12:31:55

    DENYLLEHello, Kojo. Thank you for taking my call. I'm a psychoanalyst, and I -- and most of my colleagues throughout the country are really quite alarmed at this growing trend that seems inevitable to place private medical data on these exchanges in large part because -- psychotherapy to be abused. Absolute privacy and confidentiality is really necessary. We have many, many events of hacking that has occurred compromising privacy on these electronic exchanges. And the concern that we, as mental health professionals, have is that it will deter people from seeking treatments.

  • 12:32:42

    NNAMDIOK. Denylle, I'm going to put you on hold so that I can make Bryan Sivak answer a number of questions because, finally, here's Daniel in Washington, D.C. Daniel, your concerns about privacy.

  • 12:32:56

    DANIELHi. I'm both the person involved with open data movement but also caregiver to someone with a serious condition. On the privacy side, I think that the largest part that's missing is a lack of identification system for patients that works with actual patients so that they can have the type of access control they need.

  • 12:33:24

    DANIELBut I also wanted to point out that although a lot of data geeks are making great apps that sometimes what's missing -- and I've used clinicaltrials.gov and Pubmed for many years now and many other things -- is a lack of user-friendly Web pages with persistent URLs so that people can start using these things outside of the normal data geek folks who inhabit the open-data world.

  • 12:33:57

    NNAMDINow, your turn, Bryan Sivak.

  • 12:33:59

    SIVAKOK. There are a lot of questions in there to respond to.

  • 12:34:01

    NNAMDIYes.

  • 12:34:01

    SIVAKSo privacy, I'll first say, is a foremost concern for us. You know, we recognize both sort of within the department itself but also by law that personally identifiable information is something that needs to be protected with the utmost care. The laws have been written in such a way that there are some very significant finds and including possible imprisonment for the accidental release of personally identifiable information. So we do take those very, very seriously.

  • 12:34:37

    SIVAKIn fact, whenever, you know, there are certain requests that are made, for example, for, say Medicare claims data, these requests are scrutinized by actually a few different levels of a privacy board that, first of all, look at the exact research request that's being requested and exactly which data elements and no more are required in order to satisfy that research request. So we do take those very seriously.

  • 12:35:09

    SIVAKAnd then obviously, the data itself when it's transferred to this entity, you know, is transferred, for example, sometimes on encrypted physical hard drives that are, you know, delivered by hand to these entities with a restriction as well that these entities, once they're done with their research project, must destroy the data and all copies that were ever made.

  • 12:35:31

    SIVAKAnd so we actually have a lot of different protections in place. One thing I do want to clarify -- and this was the second caller or the first caller, Denylle, you were describing, for example, mental health data on exchanges. The one thing I want to make clear is that there are sort of two exchanges that have been talked about so far.

  • 12:35:51

    SIVAKOne is the health insurance exchanges or what we'll call marketplaces that are being developed for a launch in Oct. 1, 2013 that allow Americans to purchase insurance on this market, and then this other idea of a health information exchange, which is something else that we are working alongside many different entities in the country to kind of try to set up.

  • 12:36:13

    SIVAKNow, the promise of the health information exchange is that any doctor or provider who's connected to this exchange and has signed the appropriate data use agreements and proven that they can connect securely to these entities and, you know, have the appropriate amount of access to information that's only based on permission given by the patient is that this information can kind of flow seamlessly between providers.

  • 12:36:41

    SIVAKSo for example, if I, you know, if go to my GP and have an EKG, for example, that data would then be stored in my GP's electronic medical record system. But if they're connected to the health information exchange, I can then, as a patient, authorize the exchange of that information to a cardiac specialist, for example, who can see the EKG that was just taken a couple of days ago and not have to repeat the procedure.

  • 12:37:07

    SIVAKBut again, you know, it's critical that we keep privacy and security in mind when we do this. And that's really, you know, one of the utmost concerns. To answer the final question from Daniel, so we do recognize that there are some issues with URLs changing and data sets not being available in consistent locations or in consistent formats. As a result, what we've done is developed a site called healthdata.gov, which is -- and it's relatively new. We just launched it a few months ago.

  • 12:37:42

    SIVAKBut the idea is that this is, at first, a catalogue of all of the data sets, hopefully, that we maintain at the Department of Health and Human Services. But then what we're also trying to do is to help enable access, machine-readable and programmatic access to these data sets by building application programming interfaces or APIs on top of those data sets. So app developers, et cetera, can actually access this information in a pragmatic way.

  • 12:38:12

    NNAMDIDenylle seem to want assurances that you can have a hack-proof system. I know that's what the Department of Defense wants. I know that's what everybody wants. But I guess anything is hack-proof until somebody figures out a way how to hack into it?

  • 12:38:27

    SIVAKYeah. I mean...

  • 12:38:29

    SIVAKYou know, there are, you know, and you'll hear this from any official at public safety or in defense or in any of these entities. You know, there are a lot of bad folks out there. And so, you know, we really do need to keep that, first and foremost, on the top of our minds when we design systems of this nature, so...

  • 12:38:50

    NNAMDIDenylle, thank you very much for your call.

  • 12:38:53

    DENYLLEPardon me?

  • 12:38:54

    NNAMDII said thank you very much for your call.

  • 12:38:56

    DENYLLEThank you very much. I do have one other question to Bryan, if I may?

  • 12:39:00

    NNAMDIYes, you may.

  • 12:39:01

    DENYLLEIt concerns not just the future of information, health exchange or with the present and that we do have, as I say, events of hacking. We also have a situation where a hard drive was left in the backseat of a car and was confiscated. The bottom line, it appears, is that there really is no way to ensure that these information exchanges can remain private, and it's only going to take one or two high visible -- high-visibility person in this country to have their mental health records spread across the Internet before there...

  • 12:39:39

    NNAMDIAllow me...

  • 12:39:40

    DENYLLE...could be very serious repercussions.

  • 12:39:41

    NNAMDIAnd I'm sure there will be, Denylle. But isn't that the world we live in?

  • 12:39:46

    DENYLLEI'm afraid it is. It's a very scary situation.

  • 12:39:50

    NNAMDIWell.

  • 12:39:51

    SIVAKAnd what I would say to that is, you know, rest assured that we, you know, this is, again, something that we really do spend a lot of time thinking about. You know, let me give you another example. You know, even the data sets that have theoretically been de-identified to a certain extent are sometimes possible to reconstruct the identifiable information. This is known as the mosaic effect, especially when you can potentially even use other data sources that exist completely outside a data set to reconstruct some information.

  • 12:40:24

    SIVAKAnd so this is something -- and the reason I bring that up is because this is something that is actually one of our considerations when we are releasing a data set. Specifically, does that data set, when combined with other data sets that we have released, allow somebody to identify something about somebody else out there? And so this is really something we take incredibly seriously.

  • 12:40:46

    NNAMDIDenylle, thank you very much for your call. Daniel, thank you very much for your call. You mentioned healthdata.gov. I was playing around on it today, and some of the more intriguing data sets come from the Center for Medicare & Medicaid Services, which operates a survey about quality of care for hospitals and grades them based on things like readmission rates. How would someone access that?

  • 12:41:09

    SIVAKSo these are the compare data sets: hospital compare, provider compare. And the idea here is that, at least at a high level, people should be able to go and look up a facility or a doctor and understand what the outcomes are for specific treatments or even things as simple as, you know, were the receptionists nice, you know, is it clean, things like that.

  • 12:41:36

    SIVAKAnd so we -- this is actually -- it's pretty interesting because this information is collected by survey from patients once they're discharged from hospitals. And there are actually incentives in place for -- now, for hospitals, for example, to -- financial incentives for them to improve their scores on these surveys based on sort of anonymous patient responses.

  • 12:41:59

    NNAMDIGot to take a short break. When we come back, we'll continue this Tech Tuesday conversation with Bryan Sivak. He is chief technology officer and entrepreneur-in-residence with the Department of Health and Human Services. If you'd like to get through, call us, 800-433-8850. You can send email to kojo@wamu.org. What kinds of tools would you like to see with government data about health care? You can also go to our website, kojoshow.org, and join the conversation there. I'm Kojo Nnamdi.

  • 12:44:12

    NNAMDI...guest is Bryan Sivak, chief technology officer and entrepreneur-in-residence at the Department of Health and Human Services. Bryan previously served as chief innovation officer for the state of Maryland and, before that, as chief technology officer in the District of Columbia. Today, we're talking about liberating and protecting health data and taking your calls at 800-433-8850. Or you can send email to kojo, K-O-J-O, @wamu.org. Here now is Chris in Easton, Md. Chris, you're on the air. Go ahead, please.

  • 12:44:47

    CHRISYes, Kojo. Can you hear me?

  • 12:44:48

    NNAMDII can.

  • 12:44:49

    CHRISThank you very much for having me on. Yes, I just wanted to suggest that with some of these information exchanges that we make sure that we include some pricing in there for the consumers. You know, you cannot control what you can't measure, and I think the insurance companies have found that out. They know, by zip code, how much certain procedures cost, and that's the -- that -- they use that as a measure for reimbursing purposes.

  • 12:45:14

    CHRISI think they may call it -- they have a name for that particular price, let's say, for an appendix. They won't tell you so much. But yet consumers, people that actually go to the doctors and initiate the care and choose this with the doctor, they have no idea what it costs until after the procedure is over, and then we get a bill. I mean, how many times do we go and buy a car and spend thousands of dollars? We'll maybe shop five, six, seven different dealerships.

  • 12:45:42

    CHRISBut when it comes to trying to control costs for our medical care, we have no idea what is normally customary for a particular procedure. And I think, in addition to being able to choose, you know, on -- based on reliability and, you know, who's your favorite doctor in the area, we should also have an opportunity to choose based on cost.

  • 12:46:03

    NNAMDITo compare costs. OK. Here's Bryan Sivak.

  • 12:46:06

    SIVAKYeah. So this is a -- it's a great point. Health care is a very opaque market when you think about it from a market forces perspective, and it's not just quality that we were talking about before. Cost is a huge issue as well. I actually heard a great quote yesterday that you could -- you can walk in -- or you can't walk out of a deli without paying for a sandwich, but you can walk out of a hospital without paying for your health care, you know? It's kind of a crazy thing when you think about it. A lot of it has to do with the way, first of all, the market works.

  • 12:46:38

    SIVAKYou know, we kind of have these weird systems of co-pays and coinsurance. And, you know, if you're paying $10 out of pocket for any procedure -- and you never really know how much a procedure costs -- is cost really a factor in that case? But, you know, then there are other procedures where, you know, you actually are going to pay out of pocket, and it's very, very difficult to understand this. I, you know, I had a personal example just the other day or recently. So we just had another child, and...

  • 12:47:10

    NNAMDICongratulations.

  • 12:47:11

    SIVAKThank you very much. And, you know, we were trying to figure out, sort of within the context of which health insurance plan to sign up for, which one would be the most cost-effective given that we were going to have this big, you know, medical cost coming up in the near future. And I couldn't, for the life of me, figure out how much this was going to cost, right, based on -- and we knew the hospital, and we even knew the doctor. But there's so much ambiguity in the system that I basically had to make a guess as to, you know, which insurance plan would be the right one.

  • 12:47:49

    NNAMDIWell, let me amend that to congratulations and good luck.

  • 12:47:51

    SIVAKYeah. Thank you.

  • 12:47:53

    SIVAKI'm still operating on little sleep, but we're working on it. So, you know, in any case, I do think this cost argument is a really, really important one. And, again, this sort of falls in line with the concepts of payment reform that we're working on across the department because we are trying to figure out a way of making this a lot more transparent so that people have another data point to make decisions based on it.

  • 12:48:18

    NNAMDIChris, thank you very much for your call. One kind of data that exists within the ocean of information that HHS has accessible involves location. HHS knows where a lot of stuff is, be it a primary care provider's office or elder care facility or a place where a clinical trial is taking place. Can you tell us about clinicaltrials.gov and My Cancer Genome?

  • 12:48:43

    SIVAKSure. So clinicaltrials.gov is basically a repository of all of the clinical trials that the U.S. government sponsors. And so it's a great tool for researchers, for example, to understand exactly what trials have happened and what the results of those things are. I think there's something -- I can't remember the exact number. It's something like 142,538 trials or...

  • 12:49:09

    NNAMDISounds like an exact number to me.

  • 12:49:11

    SIVAKI'm close, but I'm sure I'm not 100 percent right. But it's, you know, there's some large number of clinical trials that are listed on that. So, you know, what we're trying to do is basically take these studies that are funded by taxpayer dollars and make the information available to anybody who needs it.

  • 12:49:29

    SIVAKNow, My Cancer Genome basically leverages some of the information on clinicaltrials.gov to try to connect people to a clinical trial that is most appropriate for them. And so what we're trying to do by making this data available is, you know, to help people with specific issues that are very specific to them, to specific treatments or potential treatments that might help their specific conditions.

  • 12:49:59

    NNAMDIThere were actually 137,202 clinical trials.

  • 12:50:03

    SIVAKYes, I was close.

  • 12:50:05

    NNAMDIYou're very close.

  • 12:50:07

    NNAMDIHere now is Linda in Falls Church, Va. Linda, you're on the air. Go ahead, please.

  • 12:50:13

    LINDAThank you for taking my call. I'd like your guest to address the situation where one computer program, well, say from Kaiser, may not interface with some things, well, say from Georgetown or Columbia. So if one -- if they only have one program that works out, fine, but there are lot of programs out there. Could you address that problem?

  • 12:50:40

    SIVAKSure. So this is a question of interoperability of systems. And this is something that we feel is obviously very important in order to make information flow in a seamless and frictionless fashion between systems created by lots and lots of different vendors. And so this is actually wrapped up in the work that the Office of the National Coordinator for Health IT does and is part of what's called the meaningful use program.

  • 12:51:09

    SIVAKAnd basically what this program attempts to do among many, many other things is set out specific guidelines that electronic medical record systems need to meet in order to be eligible for, you know, some federal subsidies and things like that when they're implemented in doctor's offices. Now, one of those really important criteria is the ability to interoperate, is the ability to send information in a consistent and standardized fashion from one system to another.

  • 12:51:39

    SIVAKAnd if a system does not meet that criteria, then they will not be eligible for this category of qualification called meaningful use and, therefore, the subsidy. So we're trying to tie financial incentives to the ability to do some of these things, which we consider to be very important.

  • 12:51:53

    NNAMDIThank you very much for your call, Linda. In the wake of much of the phrase we've gotten about Kaiser, we got an email from DJ Malcolm, who says, "Kaiser is not an answer to our health care issues. My father was loving their preventive interventions, but when he actually got sick with lung cancer, the Kaiser system failed on a catastrophic level. There was no coordination of care and an apathy toward his suffering." Obviously, the experience of one extremely dissatisfied customer at Kaiser.

  • 12:52:21

    NNAMDIBut in the health care business, we know that there can be terrible disappointments also. You really have two titles at HHS. Your other title is entrepreneur in residence. What does that mean? On a certain level, the idea of being an entrepreneur working within the federal government sounds like an oxymoron.

  • 12:52:39

    SIVAKSo, you know, this is something that has been really interesting to me from my first days in government in D.C. And, you know, it's been very fascinating to me to really see how incorrect in many ways the stereotypes of government workers are, right? You know, when I first got into government, I had the same stereotype, I think, that a lot of people do, that, you know, government workers were, you know, sort of these bureaucratic beings who basically punch time clocks to, you know, sort of ride out a pension or what have you.

  • 12:53:10

    SIVAKAnd what I've actually found is that some of the most amazing, intelligent, passionate, dedicated people that I've ever worked with in my entire life work for these organizations and are doing it for all of the right reasons, often for much, much less money than they could be making in the private sector. And, you know, so it's interesting that there's so much potential in this workforce that, you know, and then, on the other hand, there's a lot of things about the way that governments work that sort of prevent us from taking advantage of this.

  • 12:53:43

    NNAMDISo you've got something called HHSinnovates.

  • 12:53:46

    SIVAKYes.

  • 12:53:46

    NNAMDIWhat's that?

  • 12:53:47

    SIVAKOK. So one of the things that we're trying to do is identify ways that we can help the workforce innovate or, you know, as I prefer the term it experiment, intelligently experiment. One of the keys to that is putting the right incentives in place. And right now, you know, government, in a lot of ways, is sort of zero-risk tolerant environment, but we have to be able to tolerate some risk if we're going to move the ball forward. And so what HHSinnovates attempts to do is identify folks within the department who are doing interesting things.

  • 12:54:23

    SIVAKWe're taking a chance on doing something and recognizing them for taking that chance. So I'll give you one great example. This is a -- it's a biannual competition that we run internal to the department. And the last set of winners for the last round ended in September of this year. And one of the winners was a team from a group within the National Institutes of Health who created this application called Free Stuff. And the story behind this, I think, is quite interesting.

  • 12:54:55

    SIVAKSo this woman, Gwen Shinko, who works at an agency called NIAID, she was out for a run one day, and she had this brainstorm that there is all this lab equipment within the National Institutes of Health that get replaced on, you know, some relatively regular basis. You know, I don't know. I'm going to make this up, but maybe a centrifuge comes out that spins faster and does something better than the one that they currently have. And so what typically happens to this lab equipment is that it goes somewhere.

  • 12:55:24

    SIVAKYou know, it goes into this sort of great lab equipment warehouse in the sky, and nobody really knows. So she had this brainstorm that, you know, what if NIH could set up this website where people could literally swap lab equipment when they didn't need it anymore, you know, so somebody has this centrifuge and say, hey, I got this centrifuge or got this mass spectrometer that I don't need anymore. Who wants it? And people could actually, you know, say, hey, yeah, I'll take it.

  • 12:55:46

    SIVAKI'll come down and pick it up tomorrow. So she -- what's interesting to me about the story is that she had this great idea, but she didn't have personally some of the skills required to actually build it. She wasn't a developer. She wasn't a designer. But she went out into, you know, the wilds of NIH and found the couple of folks that could help her build this thing. And so sort of on her own time, of her own volition and her colleagues, they actually put this thing together, and it's really started to gain some attraction within NIH.

  • 12:56:14

    SIVAKAnd so we were able to say, hey, this, you know, and actually, her colleagues nominated her for this award. And we were able to say, this is a phenomenal idea. Let's give it some attention. Let's get some recognition to it. And now it's being spread, you know, across the department and hopefully, actually, to other entities within the federal government as well, so.

  • 12:56:30

    NNAMDIGot an email from John, who asks, "Are we reinventing the wheel? As I recall, citizens of Ontario have a card with which they walk into any medical service, and the entire med records are available. Surely France and U.K. have the same. Wouldn't it be cheaper to buy their proven systems?"

  • 12:56:50

    SIVAKWell, first of all, there are probably some very significant differences in terms of the way the systems work and what they have to interface with to work in this country. But, you know, there are sort of a fundamental difference underlying many of the systems, which is that, you know, there -- the system in this country is very fragmented in terms of different payers and different providers, different pharmacies and things like that.

  • 12:57:16

    SIVAKAnd so there isn't any consistent way right now where all of that information can be consolidated in a single system. And so this is why we are kind of going down the path we're going right now, which is to say we are incentivizing the people who create these systems to actually build them in such a way that the data is transferable in this sort of frictionless and seamless fashion between other systems.

  • 12:57:42

    NNAMDIBryan Sivak, he is chief technology officer and entrepreneur in residence at the Department of Health and Human Services. He previously served as chief innovation officer for the state of Maryland and chief technology officer in the District of Columbia. Bryan, good to see you again.

  • 12:57:58

    SIVAKAbsolutely. Always a pleasure.

  • 12:57:59

    NNAMDIAnd thank you all for listening. I'm Kojo Nnamdi.

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