We chat with journalist and author Masha Gessen, whose newest book explores the complicated family history behind bombings at the 2013 Boston Marathon.
Have you ever wondered whether a new drug will react badly with one you already take? Or how to choose a new doctor based in part on her fees? The Food and Drug Administration and the Centers for Medicare and Medicaid Services are releasing vast amounts of data to help patients answer those questions–and many more. Broadcasting live from the Health Data Consortium’s Health Datapalooza conference, Kojo explores how big data and apps that deliver it to consumers could change the health care system and empower patients.
- Amy Gleason Chief Operating Officer, CareSync
- Kris Joshi Executive Vice President for Products, Emdeon
- Taha Kass-Hout Chief Health Informatics Officer, Food and Drug Administration
- Niall Brennan Acting Director, Offices of Enterprise Management at the Centers for Medicare and Medicaid Services
Join The Conversation Live From Health Datapalooza
We’re pulling in your tweets, photos and videos from noon to 12 as we broadcast from Health Datapalooza. Ask a question, make a comment or post a photo using the hashtag #hdpalooza, and track the conversation below.
You can also join a live chat here
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." Have you ever started a new drug and wondered whether it would react badly with other medications you were also taking? Or needed a doctor and wondered how much she bills for her services? Thanks to a White House written initiative to get data into the hands of the public, you could eventually have an app on your phone that would answer to those questions and more.
MR. KOJO NNAMDIThe Food and Drug Administration launched a new website yesterday where you can find data about adverse drug reactions. It follows several years of data dumps by the centers for Medicare and Medicaid services, about the fees hospitals and doctors charge for the same services. As the Affordable Care Act ramps up and consumers wade into a new world of health insurance and health care payments, there's a new push to get health data into the hands of the public. So, today, we're broadcasting live from the Health Data Consortium's, Health Datapalooza Conference at the Washington Marriott Wardman Park.
MR. KOJO NNAMDIConference brings together government gatekeepers, web and app developers, academics and healthcare professionals. Their brainstorming about how to harness big data to improve the healthcare system and empower individuals to make well informed healthcare choices. And joining us in studio at the Marriott Wardman is Niall Brennan, Acting Director at the Offices of Enterprise Management at the Centers for Medicare and Medicaid Services. Niall, good to see you again. Thank you for joining us.
MR. NIALL BRENNANGreat to see you, Kojo. Good to be here.
NNAMDIAlso in studio with us is Taha Kass-Hout, Chief Informatics Officer at the Food and Drug Administration. Taha, good to see you.
MR. TAHA KASS-HOUTGood to see you. Thanks for having me.
NNAMDIAnd Kris Joshi is Executive Vice President for Products at Emdeon. Kris Joshi, welcome.
MR. KRIS JOSHIThanks for having me.
NNAMDIYou too can join the conversation. If you happen to be in the studio with us and you have a question or comment, you can step before the microphone in the center of the room, or in the front of the room. You can call us at 800-433-8850. Send email to firstname.lastname@example.org. Shoot us a tweet @kojoshow or go to our website, kojoshow.org. Ask a question or make a comment there. Taha, allow me to start with you. The FDA announced yesterday that it's launching the website called Open FDA, releasing data on the adverse effects some drugs can have when taken in combination with others.
NNAMDIThat will be followed shortly by data on drug recalls and drug labels. First, tell us exactly what this data is and where it comes from.
KASS-HOUTThank you very much. So, Open FDA is a new initiative we're very excited about launching. The launch yesterday and the excitement we're seeing from the community. Primarily, what we're trying to do is highlight high priority data sets that the agency has published in the past in the open space, by making it really easy for consumers and developers to be able to interact with this data in a more meaningful way. So, in a way that -- you don't stop with the data. It actually starts with the data.
KASS-HOUTSo, we're building a community where, making it really easy to access the adverse -- currently, the adverse drug events. So, you have about 10 years worth of data. This data primarily has been received from industry, from clinicians, from the public, directly submitted to FDA over the last decade. And it comes in a variety of formats that we're now making it really easy for you to query or search.
NNAMDIWell, I know how enthusiastic you are about Open FDA, because you gave me a sticker to put on my laptop. But what is the goal? Are you hoping that tech developers, doctors and patients -- what are you hoping they will do with this information?
KASS-HOUTWell, we want to spur innovation. It's -- they say good fences keep good neighbors. So, the idea is if we can build the building blocks where developers have far reach into developing apps, like mobile apps, or websites, can talk directly to consumers or develop applications that are more consumer friendly. So, that's really sort of the way that we're building the platform.
NNAMDINow, Brennan, your agencies, The Centers for Medicare and Medicaid Services, has been at the forefront of President Obama's Open Data Initiative over the last few years. You've released lots of data on Medicare payments at the state hospital and individual physician level. What data have you chosen to release and why?
BRENNANSo, we felt that there was a lot of -- a lack of information on the health care system, generally. Patients and the public knew very little about their doctors, and in many cases, doctors didn't know a whole lot about their patients. So, we've engaged in a whole range of activities to try and minimize that information asymmetry. Some of it is controlled releases, like giving doctors information on their beneficiaries and the other providers that their beneficiaries see. And some of it is more open releases like some of the information we released this week and a few weeks ago on hospital charges, on physician utilization.
BRENNANAnd we've already seen that data being used in new and very interesting ways. Prior to the release of the physician data, really, all folks knew about their doctors, in many cases, was a name, address and a phone number. And now they know how they practice in Medicare and what types of procedures they provide.
NNAMDIIn case you're just joining us, the number is 800-433-8850. We're coming to you from the Marriott Wardman Park, discussing Health Datapalooza 2014 on this "Tech Tuesday." Taking your calls at 800-433-8850. What data would you like to have about hospitals, doctors or medications to help you navigate your own medical care? 800-433-8850. Kris Joshi, the Affordable Care Act gives people new options for buying health insurance. How is it fueling new demand for data about healthcare systems, doctors and fees so patients can do some, well, comparison shopping?
JOSHIThat's a great question, Kojo. The Affordable Care Act has really empowered patients to not only select their insurance policies, but given them more options on how to shop for health care. And now that they have an incentive to manage their own out of pocket payments, which certainly will grow as consumer directed health plans begin to become more popular, they really need the tools that help simplify the healthcare system for them. So far, the transparency in cost and prices in pharmacies as well as in hospitals and offices -- that's really been missing.
JOSHIBut the data that's necessary to provide that transparency is available. So, at Emdeon, we connect doctors, physician offices, hospitals, labs, pharmacies. We see a lot of that data, and when you compare that data and combine it with the kind of data the Medicare has released now about payments, you have a rich goldmine of information about costs and prices that you can now empower customers with. So, it's time for the health system to stop thinking of patients just as patients, but to start thinking of them as consumers, and smart consumers with good data empowering their decisions.
NNAMDISo, consumers are now already in a position where we can do comparison shopping?
JOSHIIndeed. In fact, in most other walks of life, you take that for granted. If you're buying a house, if you're shopping on Amazon, you want to do comparison shopping. And that capability is coming to healthcare pretty quickly now.
NNAMDI800-433-8850, and if you happen to be in the audience and you are an app developer, what is the next health data set you'd like the government to release? But, you can also give us a call or send us an email to email@example.com. Now, one of the biggest concerns among health data experts is how to empower patients to see and use their own treatment data. What are the obstacles and how will the release of Medicare and FDA data and other government data help to achieve that goal?
BRENNANSo, I think one of the fundamental things is that the data can sometimes be complicated and a little bit overwhelming. And that's actually why we're reaching out to folks in the developer community and innovators, like the people at the Datapalooza, because we believe that if we put this data out into the public sphere, that they can innovate around the data and give consumers the information that they want in the format that they want it. I think one example is Medicare. We've allowed beneficiaries to download their entire claim history for hospital, physician and drug information.
BRENNANAnd, so, three years of data for an elderly person, who may have several chronic conditions, could potentially be a lot of data, but developers have built apps that ingest that data and present it in a really customer friendly and useable way for folks. And so they can take that data, understand what drugs they're on, what providers they're seeing, take it to their providers so their providers can see it too.
NNAMDIKris, another challenge is standardizing the format of the data. And the medical terminology it uses, so that lots of people, like me, in medical systems can use it and understand it. How is your company, Emdeon, involved in that effort?
JOSHISo, the healthcare information that flows across our network was really designed to get physicians and hospitals and labs paid. So, it is full of codes. And those codes, to any normal human being, are completely unintelligible. Now, we are seeing tools that companies like Emdeon and others, are bringing to the market, that help simplify those codes and turn them into human readable, human understandable concepts. So, from the time that you actually realize that you have a condition. You get a diagnosis. We think that the consumer should have an experience that mirrors what they see in other walks of life.
JOSHIYou know, you order a taxi service with Uber today, and you get so used to that app that it's hard to go back from that simplicity. Yet, when you have a condition and you're looking for some information related to it and make an appointment to see the right physician. And then when you come back from the hospital, when you see all the bills that you have to pay, not from one source, but from several sources. There's no help today to help patients reconcile all of that and to get them engaged, which leads to a lot of frustration. So, I think a good way to get patients engaged is to first help them simplify their exchange, their interaction with the health system. And that's something we are focused on.
NNAMDIOn to the telephones now. I think, Taha, that Rick in Fairfax, Virginia has maybe a challenge for you. Rick, you're on the air. Go ahead, please.
RICKHey, Kojo. Hi. I think the FDA could use a part of their website that's dedicated to the evidence based use of dietary supplements. I'm a healthcare practitioner, and I see a lot of patients taking a lot of supplements that they don't understand why they would be helpful or harmful. Or why. And at the same time, they're not getting information about dietary supplements that could be helpful for their medical conditions. And I'll just give you one example.
RICKThere's a condition known as diabetic peripheral neuropathy. And there are two medications for it that are strictly (word?) They don't do anything to treat the underlying condition. And yet, there are three dietary supplements that can be purchased over the counter that are very evidence based, in terms of their ability to affect this condition. And this is the kind of thing consumers need to see.
NNAMDIWhat do you say, Taha?
KASS-HOUTWell, that's really an excellent question, Rick. Thank you. So, as I mentioned at the beginning of the session, yesterday's launch was -- the first data set around drugs, adverse events. The hope is over time, that we guide that process into working closely with the community and with FDA to see what is meaningful next to release, as far as adverse events, beyond just drugs. So, this could be medical devices, could be food and hopefully supplements. So, the way, also, we're launching Open FDA is we start with the data, we don't stop with the data. Meaning that it's building the community, building the apps and then showcase how people are using this information from development standpoints and also, how, what's the impact.
KASS-HOUTAnd that will also guide how this data can be used, interpreted, misinterpreted. And then, also, what are meaningful applications for consumers?
NNAMDIOn now Reedy, in Germantown, Maryland. Reedy, your turn. Hi Reedy. Are you there? I can't hear Reedy at this point. I think I pressed all of the appropriate buttons. But Reedy had a question that, I think…
REEDYI'm here. Can you hear me?
NNAMDIOh, yes. We can now, Reedy. Go ahead. I was just about to ask your question for you, but you've got it.
REEDYOh, thank you very much. First of all, sharing the data in healthcare is a very important and the Open Data Initiative is a great initiative for the consumers. And data is not available (unintelligible) I hope that challenge will be solved in the future. I have two questions. Number one is with the healthcare available, is it possible for the patients of consumers to understand, meaningfully, how much a particular treatment really costs and how successful a treatment is at a even specialty?
NNAMDIWell, Niall, I'll start with you.
BRENNANSo why don’t I start with that? You know, I think it is possible. Is it perfect yet? Maybe not, but again that's the rationale for releasing the state of the hospital charge data. For example, it can help somebody lacking health insurance coverage or in a high-deductible plan have a very good idea of what the charges for that hospitalization are. And similarly on the physician's side there's a lot of information, both about the physician charges and also the number of times a physician provides a particular service.
BRENNANSo as a consumer deciding to get a particular procedure you will probably want to go to a physician who, you know, does this more than once a year in order to ensure that they're a highly-skilled practitioner.
NNAMDIKris, anything you'd like to add to that?
JOSHIYeah, the great story there in my mind is that the data is getting much, much better. And today in our data we can actually estimate how much it costs not only for a visit to see a physician and then compare that cost to cross physicians in the region but also how much an episode of care might cost. And that might be a complex episode that requires a stay at a hospital plus the drugs that go into the treatment and other tests and diagnostics. So the data is getting to the point where it is becoming much, much easier to do so.
NNAMDIGo to take a short break. When we come back we'll be continuing this conversation coming to you from the Marriott Wardman Park Hotel where Health Datapalooza 2014 is in progress. It's a Tech Tuesday conversation that you can join by calling 800-433-8850. Have you used any health data apps? What did you use and how did you like it? You can also send email to firstname.lastname@example.org. I'm Kojo Nnamdi.
NNAMDIWelcome back. It's a live Tech Tuesday broadcast from the Marion (sic) Wardman Park Hotel where the fifth annual Health Datapalooza 2014 is now in progress. And joining us in studio is Niall Brennan, acting director of the Offices of Enterprise Management at the Centers for Medicare and Medicaid Services. Taha Kass-Hout is chief health informatics officer with the Food and Drug Administration. And Kris Joshi is executive vice-president for products at Emdeon.
NNAMDIWe have a studio audience here and a microphone. If you choose to ask a question you can simply stand in front of it. If you're listening on the radio you can give us a call at 800-433-8850 or send email to email@example.com. How do you think easier access to data can help improve the health care system, 800-433-8850? The need to protect patients' privacy is extremely important. How do you divulge all of this information about treatment, about billing practices without exposing individuals? Taha, I'll start with you.
KASS-HOUTSo that's a very excellent question actually. I mean, all the data that we have right now is stripped from NEPIIs -- might have a little bit of lag. It might not be very timely but it will be because of that reason.
NNAMDINext to you, Kris.
JOSHIWell, if you take the view of a patient suffering from a condition, their view of privacy is actually quite different from a general public view. We do need to protect privacy but when you talk to the patients who want better, faster treatments made available to them, what they really want is the control, the consent. So the key to using patient data responsibly is to gather the consent from the patient and to use that consent responsibly.
JOSHIAs you just heard, there are good procedures in place to identify data for its use for big data analytics. That's really not a problem. The real challenge, I think, is for us to engage with patients meaningfully so that when it's time and when it's appropriate for their own care or for their involvement in research, that the consent can be easily and quickly collected, managed and the patient is empowered to do that.
BRENNANYou know, as the stewards of Medicare and Medicaid, patient privacy is absolutely paramount for us. And I think in the past that concern to protect patient privacy may have inhibited some of the data releases that we've been able to do in recent times. What we've been able to do is just get creative with the types of data that we release. There's a lot of information in aggregated data that's not at the patient level. For our physician data release we were able to release 9 million lines of information covering almost 900,000 providers in the United States.
BRENNANBut what we did from a patient-privacy perspective was to specifically not include any procedures that physicians perform to 11 or fewer Medicare beneficiaries, thereby reducing -- eliminating the possibility of any patient re-identification.
NNAMDIMore about the responses you got from some of those providers in a minute but first, here is Julia in Bethesda, Md. Julia, you're on the air. Go ahead, please.
JULIAHi. Thank you. I would like to have more detailed clear information on drugs, on medicine. You know, nowadays sometimes you have a disease or have a symptom. You got a medication maybe just to help you. But sometimes different -- you have a choice of a different medication. Which one can -- you know, cannot only -- you know, for instance I take a high blood pressure medication -- which one can kill your symptom? But we want ones which can provide you better quality of life.
JULIAThere are a lot of information on the web but you don't know which one to believe, if there's a standard one clear and the comparative look and that kind of information. Also, any nutritional information in that way so we don't have to be sick to be treated to provide us a better and healthy life.
NNAMDIWell, the hunger for information is clearly there. I'll start with you Taha and then go to Kris on this one.
KASS-HOUTSure. No, thank you. That's another great example and question. So right now, as I mentioned, I mean, we are starting with the adverse events for drugs. There's plenty of information over there. We try to harmonize the data meaning we have provided hooks or links to other datasets that can be potentially where the public can search this data on their own.
KASS-HOUTBut the goal is -- you know, there's plenty of information to start with adversary events. Others might have other type of information, whether federal government or in a public or private sector. And this is a great opportunity right now is to make it where you can put these datasets together so you can start answering questions like drug interactions, food interactions, what is better quality for me.
KASS-HOUTIf you link, for example, this data with electronic health records data you might get further insights. So look at this as a mosaic. This is just one part of the puzzle. You can't get all the answers from one -- it's similar when you look at an object and you're looking at one façade. That doesn't tell you everything about that object so...
JOSHIWell, I'll add to that. The information that's most valuable to a patient is time sensitive information. So when you're in the pharmacy and you're picking up a drug, that's the point at which if the pharmacist can give information that's relevant and valuable to the patient to make a better choice, it's useful. So there's always a place to go on the internet and do a web search or to go find comparative information on drugs. But frankly it's very complex. It's really difficult to even know which drugs to compare.
JOSHISo the really appropriate place is to involve a pharmacist to be able to provide immediate information. One of the ways that we're enabling that is through our pharmacy network. We connect 60,000 pharmacies where 200 million patients go fill their prescriptions. And you have an opportunity to be able to provide targeted messaging back to the pharmacist. When they look up the eligibility of that patient for their insurance coverage we send back a message to the pharmacist saying that for this patient here are some of the things to keep in mind about either side effects or comparative drugs that may be even cheaper and alternatives. So that's coming very soon.
NNAMDINiall Brenna, we got a tweet from Alisha on what database to release next. She said, "Data identifying physician malpractice data." In a different twist on the privacy question, you've taken flack from physicians whose names you released along with the amount of money Medicare paid them for specific services. What's the rationale for releasing that information and when can Alisha expect physician malpractice information?
BRENNANWell, thank you very much, Alisha, for that extremely difficult question. So I'll deal with the second part of the question first. I mean, we felt that it was very important again to address what we viewed as an information deficit for consumers and for the public regarding how physicians practiced. There was actually a legal injunction prohibiting our agency from releasing this type of information until very recently. And so when that court decision was overturned we proceeded in a very...
NNAMDIWell, in 1979 wasn't it?
BRENNANIn a 1979 Florida court decision. And we proceeded in a very kind of methodical and inclusive fashion to solicit public opinion over the appropriateness of releasing the data. And I think the public feedback we got reinforced the view at the agency that the public interest of releasing this information outweighed any privacy interests of the physician. I think specifically to some of the early reporting around the release, yes, it was, you know, I think interesting for folks to focus in on physicians, you know, making X amount of dollars from the Medicare program.
BRENNANIn some cases there were actually logical and plausible reasons for them and others, you know, maybe there weren't. And we have folks at the agency who actively monitor all Medicare providers to make sure that they're practicing in an appropriate manner. Regarding malpractice data, I think that's something we have to check into. It's actually not something that we have easily on hand at the agency. We tend to be kind of a transactional payer. And so that information may be, you know, in another agency or, you know, in lots of, you know, thousands of little data silos at insurers around the country.
NNAMDIWell, investigative reporters have taken your Medicare payment data and written stories that raised eyebrows over why some hospitals, some doctors charge Medicare more than others for similar services. Should we be concerned by the existence of such big discrepancies or are there valid explanations?
BRENNANSo geographic variation in health care has bedeviled us for many years now. The folks at the Dartmouth Atlas, Jack Wennberg, first examined this in probably the '70s or '80s. And so the fact is is that there is massive variation in health care spending for folks with very similar conditions in the United States. So states like Wisconsin and Washington tend to have very low per capita health spending. And states like Florida, Texas and Louisiana tend to have very high spending.
BRENNANAnd even after you adjust for some explanatory factors like sociodemographics and overall patient health, the differences still persist. So we do think that it is worth having conversations about variations and health care utilization and variations in health care pricing regardless of whether Medicare beneficiaries are not -- or actually exposed to hospital charges. They're not because Medicare pays a negotiated rate on their behalf.
BRENNANNot everybody has the benefit of being covered by a large insurer like Medicare or another insurer. And so if there is a four- or five-fold variation in the charge for a routine procedure at a local -- across local hospitals in Washington, D.C. I think that's worth having a conversation about.
ANNOUNCERWe're having technical difficulties in bringing you "The Kojo Nnamdi Show." Stay with us. We're working on the issue and we'll have the show back to you in just a moment.
AUDIENCE MEMBER...81 percent of the survey respondents said that they'd use wearable devices to track their personal health information, which I found astounding. And 90 percent said that they would share their health information with researchers to improve disease care and treatment options. And -- but the astounding statistic to me was a whopping 26 percent don't care about privacy. So I'm going to put to you the question that I put to the panel. Why is that do you think and should they be concerned?
NNAMDIYou weren't satisfied with the response you got from your panel. You have to bring the question to our...
MEMBERI like your audience, Kojo.
NNAMDIOkay. Thank you very much. Go ahead, please.
BRENNANSo as the Medicare government official I'll stress that I care deeply about privacy but I think it's just -- it's interesting. People want -- like Kris said, people want actionable information to help them make more informed decisions about how to get care, how to treat disease, you know, how to give -- how to, you know, get better, how to live longer. And I do think people are very willing to share their data so other people can help them along that journey.
BRENNANThere are websites like PatientsLikeMe, people with rare diseases who are voluntarily sharing very, very granular information about their diseases and disease progressions and treatments. Open for anybody to see on the internet because, you know, they-- being ill is -- navigating the health care system is a scary, stressful time. And I think a lot of people feel that they need all the help that they can get.
KASS-HOUTYeah, maybe I'll add onto that just a little bit. I definitely think there's a variation in the population. People who are sick or would like to see new treatments are certainly much more willing to share their data for all the right reasons. But I think across the broad population as well, there's a generational difference. We have a whole Facebook generation that's growing up and sharing so much information on Facebook. And they really don't feel bad about it at all.
KASS-HOUTSo you will see the sharing of health data growing but by the same token we cannot take for granted that everybody wants to do that. And we have to have the tools out there that let people control their privacy and also be able to control the consent they provide in case they change their minds for example. It should be taken for granted. So there's a middle ground there that we need to shoot for.
NNAMDIOn to Jay in Darnestown, Md. Jay, you're on the air. Go ahead, please.
JAYYeah, hi. The real battleground is economics because the highest correlation to long life is having money and not having to pay exorbitant amounts of money when you come up with, you know, diseases that are persistent. So the question is, how do you battle the doctors and the hospitals whose (unintelligible) going to be overturned by technology and get that into an area so that you don't just do some type of kosher thing from rich doctors and hospitals to some rich large IT firm?
NNAMDIYeah, questions about how do you protect doctors is your question?
JAYYou come back to push back which invariably is what you're fighting because you are -- if technology, which is disruptive, which is upsetting and will upset the income level of doctors and hospitals. And in the lieu of that ...
NNAMDIAre you talking about respect that you're going to get from the doctor or hospital lobby is what you're saying?
JAYHow do you fight the reality that yes, there is this huge economic dislocation from the existing doctors and hospitals and you're trying to get it to the benefit of the citizen...
NNAMDINiall Brennan, is there necessarily going to be an economic dislocation? There might be economic reorganization but necessarily dislocation?
BRENNANSo, yeah, I think you got it right, Kojo. I mean, there is a huge economic imperative at stake here. Health care consumes 20 percent of our economy and I think most people have agreed for a very long time that that is a clearly unsustainable path. And so what the Affordable Care Act did was introduce a whole host of incentive changes to, you know, engage in getting to higher quality care at a lower cost or getting us onto a more sustainable glide path for the future.
NNAMDIThank you very much for your call. Kris, Emdeon is the largest clearing house of health insurance claims in the country. You're a middle man between service providers and peers. Talk about how the private sector is generating and analyzing health data.
JOSHIWe are the other half of the health care economy if the first half is government health care, so Medicare, Medicaid. We represent really the wide range of health insurance companies, the commercial health insurance companies that provide care coverage. So when you actually look at the health system that way, you realize the diversity of the health system is not just in the geographical variation and hospitals, but also in the way people get coverage.
JOSHIAnd because we have got such a comprehensive network that connects pharmacies, labs, hospitals, physicians offices, we get an incredibly comprehensive view of what is going on with a patient. We know which pharmacies they shop at. We see a longitudinal view of what is happening to them, how they're getting care, where they're getting care, how much that care is costing.
JOSHISo today we are analyzing that data and helping hospitals, as well as insurance companies, battle fraud, waste, and abuse. That's one of the major analytical use cases that we are able to target. We're also going after targeted messaging, as I discussed earlier, to help physicians and pharmacists deliver point-of-care information that's relevant and useful to the patient.
JOSHIAnd the last frontier, I would say, is to make that same information available to consumers, to make them better shoppers, to also be able to give them advice, and to engage them in their process of care delivery and getting better so that they have a positive impression of the health system. They provide consent for the -- to use the data for research, and they really become active participants in healthcare. Today, most consumers are not actively engaged. And we need to cross that bridge.
NNAMDIGoing to take a short break. When we come back, we'll continue this conversation coming to you from the Marriott Wardman Park Hotel about the available opportunities with data that is being presented by the government. We'll talk with a couple of people who have actually developed apps given -- based on that data. But you can still call us at 800-433-8850. If you could design an app using health data, what would that app do? 800-433-8850. You can send us email to firstname.lastname@example.org, or shoot us a tweet, @kojoshow. I'm Kojo Nnamdi.
NNAMDIWelcome back from Health Datapalooza 2014 at the Marriott Wardman Park Hotel where we're talking with Niall Brennan, acting director of the offices of enterprise management at the Centers for Medicare and Medicaid Services. Taha Kass-Hout is chief health informatics officer with the Food and Drug Administration. And Kris Joshi is executive vice president for products at Emdeon. Also joining us in this studio audience is Amy Gleason, chief operating officer of CareSync and a registered nurse. Amy Gleason, thank you so much for joining us.
MS. AMY GLEASONThank you for having me.
NNAMDIYour company developed an app that was inspired in part by your own personal frustration with the healthcare system after your daughter was diagnosed four years ago with an autoimmune disease. What was your experience? And how does the HealthSync (sic) app simplify medical records and help patients keep track of appointments, test results, and medications?
GLEASONSo my daughter was diagnosed, as you said, four years ago, and it's a rare disease. There's only 3,000 to 5,000 kids with it. So her pediatrician had never seen anyone with that disease before. So we were -- kind of like you were just saying on the panel -- very alone and went to a message board actually that was public, not private, and I posted a question. And within a couple hours, I had a mom with this disease reach out to me and give me resources.
GLEASONAnd then I also had known there were other apps out there, so I tried several different apps. But it takes a lot of work to keep all that information current and make it all go around today. And so CareSync actually has a service that we go out and do that work for you for the patient, and we create your own data and keep it current, keep all your medications active. And then you can share it with your family, your doctors, researchers, whoever you'd like.
NNAMDIA lot of your customers say they've used your app to find errors in their medical records and to avoid duplicate tests. How so?
GLEASONYes. So we've had about one in three people have said that they found an error that they deemed significant. Any kind of error was over 50 percent, so we think that's because people are more familiar with their own information. And it's easier to spot an error. And then the duplicate test, by having your information on a mobile device with you at any time, then you can share the test that you just had last week or last month and not have your doctor have to repeat it.
NNAMDICareSync is a subscription service. How does it work?
GLEASONSo there's a free app that you can get from the Apple and Google Play stores on CareSync.com. But then the subscription service is a premium service that you can add on. So it's a monthly fee, or you can do a per-visit fee or just a one-time go get all your history.
NNAMDIWell, thank you so much for joining us. An congratulations to you.
NNAMDIAlso joining us now is Dave Vockell. He is founder and CEO of LyfeChannel. Dave, thank you for joining us.
MR. DAVE VOCKELLGlad to be here.
NNAMDIPart of the Health Datapalooza was a Code PaLOUsa challenge. Developers were invited to take a set of Medicare data and create an app that allows patients to be active partners in their healthcare. Out of 56 entries, your Smart Health Hero app was chosen this morning as the winner. Congratulations.
VOCKELLThank you very much.
NNAMDITell us how you approached the challenge, and tell us what your app does.
VOCKELLThe -- like all great personal healthcare breakthroughs, this one began at the...
VOCKELL...and it talked to the...
NNAMDIIs that how you identify a senior, somebody who is having breakfast at the IHOP?
VOCKELLWe look for other indicators like slightly grey and more happy even the average person. And we talk to them about how they use Medicare, and we talk to them about the new dataset that had been released by CMS and what they would do with that information if they had it. And from that, we took an approach of, how can we build a Honda, not a Jaguar, out of this awesome set of data? Because oftentimes these great sets of data are converted into incredibly complex and impossible to understand items.
VOCKELLAnd the two things that we heard were, number one, I like my current doctor, but I'm willing to negotiate. The second thing was, could you make the print really big? So one of the technological innovations we had was it prints really pretty. And the final, of course, was that the blueberry syrup is magnificent.
NNAMDIHow can patients use your app? And when will we be able to get it?
VOCKELLThere's -- there should be a link up today at LyfeChannel.com -- L-Y-F-E-C-H-A-N-N-E-L.com. And just like the early days of the Internet changed the way that we buy cars, where in 1999, the price of the exact same car within 50 miles could vary by up to 25 percent. Today with the Internet, it's below 3 percent. What we provide is, if you tell us who your doctor is, we'll tell you kind of protocol by protocol what that physician charges. We also explain that it's not a perfect set of information, but how you could use it to start a conversation with your doctor about what he charges Medicare and correspondingly what you might end up paying out of pocket.
NNAMDIJust one of the reasons why there are so many people here at Health Datapalooza 2014. Thank you so much for joining us.
NNAMDIBack to our guests Niall Brennan, Tasa (sic) Kass-Hout, and Kris Joshi. One of the big trends in healthcare is the shift from a fee-for-service system where doctors have financial incentives to order more tests and provide more treatment to a value-based system that rewards doctors and hospitals for good health outcomes. What role does health data play in that transition? I'll start with you, Taha.
KASS-HOUTOne of the great things that we hope -- I mean, imagine the Internet without a search engine. I mean, that is really where we're starting with open FDA, is make it searchable where you can look for insights, like, with others. Let's say, for example, you experience an adverse event. You know, others are experiencing the same thing. How is that, you know, over time? Let me break it by age and gender. Let me break it by region. So that would derive more insights where you're more intelligent about asking the right questions and also guide your way of thinking.
KASS-HOUTThat in addition to the way we're building this is for smart developers, our IQ guys out there, is to start building these apps, start talk to the consumers and talk to the consumers with his pharmacist, a clinician, a patient, a researcher, and be able to consume this information and search it for others out there.
BRENNANWell, you know, I agree with Taha. And data is a key enabler and in many ways an accelerant on this journey to value-based care. We're asking providers and patients to act in dramatically different ways, so you can't ask providers to take on risk or to, you know, stop viewing the patient as a transaction and start viewing them as a patient without giving them information on the totality of their care.
BRENNANOne example is there's a major program under the Affordable Care Act called Accountable Care Organizations. And so they are responsible for all of the beneficiaries and care and health against a defined target. And what we do is we give ACO providers monthly claims fee. It's monthly information about all of their assigned beneficiaries, so they can see the other doctors that they're going to and get a better overall picture of the beneficiary and tweak and manage their care in the most optimal way.
JOSHIOne of the major challenges for physicians to take on risk and manage risk is that they don't know what is happening to the patient once they leave the hospital or they leave their office. So what we're doing is to help physicians better track what is happening to the patient, whether they went to the pharmacy and whether they filled their prescription or not, whether they ordered lab tests, or were seen in a different hospital, or showed up at an emergency room somewhere.
JOSHIThis information today is sitting in silos that don't talk to each other. So we're one of the few places where the network actually sees what's happening. And we'd like to make that network an intelligent network so that it can actually act on it and then partner with physicians to be able to better manage their care transitions from a hospital to a physician's office or to a post-acute care facility and the longitudinal care of the patient so that it saves money bit at the same time improves the experience for the patient.
NNAMDISpeaking of linking, we got an email from Siva (sp?) at Aerotek (sp?) who said, "Open FDA is a great initiative. We are developing apps to find all drug data at one place and make it easy to link to. Is there a plan to link this open data with CMS and the National Medical Library data?"
KASS-HOUTWell, I mean, definitely there are hooks you can do it. We leave that up to our developers to do it. So we're working really hard on what I call the harmonizing the data sets in ways that you'll be able to link it. Also harmonize the data -- I mean, from consumer, it's far more easier to use. Imagine if you're searching the Internet and you have to be very specific about the taxonomy you can select from. You know, you need to allow misspells of a drug name. You can either allow -- for example, if I have a UPC code, someone can scan it.
KASS-HOUTAnd I'll be able to find not just a drug but also the manufacturer, has there been any recalls by that manufacturer? You can be over-the-counter medication. You might actually -- there might not be a recall on that product, but maybe the manufacturer had other recalls that might be related, making it really easy -- right now, we do link to the VA datasets for the pharmacal (sic) vigilance and pharmaceutical pathways and whatnot. So that's one step further, but the hope is, you know, others can out there can start searching other healthcare data.
NNAMDIHere's Betty in Silver Spring, Md. Betty, you're on the air. Go ahead, please.
BETTYHi. I'm wondering whether FDA can (unintelligible)...
NNAMDIBetty? Betty, can you ask your question over again. We missed a part of it.
BETTYWhether FDA can...
NNAMDIWow. We're missing several parts of it, Betty. I think we're going to have to move on until you get a stronger connection. Talk about how to use health data on an individual level. How can we, as healthcare consumers, tap into this data to help us choose a doctor or hospital or to challenge a bill? Niall?
BRENNANI think you can use it in lots of different ways, as was, you know, evidenced from the challenge winners. You can use it to find out more about what your provider charges for care, the types of services they can provide. I think also healthcare -- there's a lot of data -- an increasing amount of data liquidity out there, and so the challenge and the great work that folks in the audience are doing is that they're turning all that data into information that, you know, appeals to people and that they can grab onto. So it could be as simple as knowing all the drugs that you're on.
BRENNANAgain, if you're multiply comorbid and many different conditions or, you know, rare conditions where, you know, there may be off-label drug usage, I think, you know, those are the ways in which patients can be empowered and get the right information at their fingertips on their smartphone to better manage their care.
NNAMDI800-433-8850 is the number. Let's try Carol in Baltimore, Md. Carol, you're on the air. Go ahead, please.
CAROLThank you, Kojo. I love your show. Thank you. Okay. Here's my question. As a consumer myself, is there an app or somebody thinking of developing one, I hope, where consumers like me who -- we can put in our health and -- oh, what made me ask this is I've been trying for days to pay my bill at Blue Cross by phone, even to give them money, and they're not answering for two hours. Okay? So here's my question -- is to find out if we can put in our number, our group number, ID number, and our policy and all that, to find out if there's any holistic practitioners in the area, like chiropractors and acupuncturists, who will be covered by my insurance?
NNAMDIJust in case you're looking to give money away, by the way, here's my number. No. Niall Brennan, go ahead, please.
BRENNANWell, it sounds like you've issued a challenge over the phone to many of the developers in the room to come up with the type of tool that you need. I also think, from a more practical purpose, I can't speak to your insurer generally, but many of them do have provider lookup tools that allow you to look for particular specialists. So you might want to check the website of your provider. I'm not saying it'll be the perfect solution, but it might be a good place to start.
NNAMDIWell, this is the fifth annual Health Datapalooza convening people from government, academia, business, and healthcare to collaborate on the dissemination and use of health data. Can you give us, in your view, a five-year report card? Are there specific changes or improvements that we've seen as a result of the open data effort, Kris?
JOSHIWe've seen a lot of progress...
NNAMDIWe only have about two minutes left.
JOSHIOh. We've seen a lot of progress. The meaningful use incentives really turned on the torrent of data because a lot of data that was on paper initially is now electronic. That data is starting to flow. The implementation of standards through the meaningful use initiatives is also grown. And you're now starting to see a tremendous appetite not only for providers to use that data, but for payers to use it as well. And, finally, the last frontier, which is the consumer, is now really just starving for that. So I think we're at the tip of the iceberg. We've just seen the tip of the iceberg scratching the surface of the data revolution in healthcare.
NNAMDICan you ask your question in 30 seconds or less?
UNIDENTIFIED FEMALEI just want a challenge to connect the data in terms of upcoding consumers' Medicare coverage. Sometimes they're billed for something that they don't need to pay for. And connecting the dots between that data so that they can be educated consumers.
NNAMDIAnother challenge. You've got 10 seconds.
JOSHIGreat point. We're working to consolidate the statements you get from your provider and from your insurance company so that you can actually see what was billed, what was approved, and what you should be paying, so you don't have to have five different statements to look at. You have one.
NNAMDIKris Joshi is executive vice president for products at Emdeon. Kris, thank you for joining us.
JOSHIThank you for having me.
NNAMDITaha Kass-Hout is chief health informatics officer with the Food and Drug Administration. Taha, thank you for joining us.
KASS-HOUTThank you for having me.
NNAMDIAnd Niall Brennan is acting director in the offices of enterprise management at the Centers for Medicare and Medicaid Services. Thank you for joining us.
NNAMDICongratulations once again to Dave Vockell, and thank you all for joining us. Thank you all for listening. I'm Kojo Nnamdi.
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