MR. KOJO NNAMDIWelcome back live from the Health Datapalooza, the Omni Shoreham in Washington, D.C. Soon your entire health history could be accessible through one data portal allowing you to share your records with your family over the internet and use mobile apps to track progress of your medical treatments. Technology provides new ways to gather and to share information about your health. And as hospitals adopt more advanced systems, opportunities for taking greater control over your medical choices are multiplying.

MR. KOJO NNAMDIBut to benefit from recent innovation, many of us may first have to change the way we think about our health and become active rather than passive health care consumers. Here to talk about that is Joe Selby. He is executive director of the Patient-Centered Outcomes Research Institute which examines the health outcomes of different medical treatments. Joe Selby, thank you for joining us.

MR. JOE SELBYHello, Kojo. Thank you.

NNAMDIAlso here with us is Farzad Mostashari. He is the national coordinator for health IT at the U.S. Department of Health and Human Services. Farzad, good to see you again.

MR. FARZAD MOSTASHARINice to be back.

NNAMDIYou can call us at 800-433-8850 if you have questions or comments. Do you feel like you have the right information to make decisions about your health, 800-433-8850? Or you can send email to kojo@wamu.org or send us a Tweet at kojoshow using the hash tag kojopalooza or simply go to our website kojoshow.org and join the conversation there. Farzad, most Americans could give you a close estimate of the balance on our checking accounts but probably fewer people are aware of some of the more important numbers for our health, such as our cholesterol levels or our blood pressure. What do you think is the key to getting patients smarter about their health care?

MOSTASHARIWell, the first step is, people being able to get access to their own data. And I remember being with my mom in the hospital. And the only place where her care was coordinated was in the chart. And it was pretty clear that I wasn't supposed to be looking at the chart. And those attitudes, I think, really put an arms-length between patients and their family members and being able to take an active role in their own health care. And I think those attitudes are changing.

MOSTASHARIAnd access to your own data is one of those fundamental rights that we need to exercise. And doctors and hospitals need to embrace, not be afraid of.

NNAMDITalk about how changes in health care implementation could increase patient engagement.

MOSTASHARIWell, we have, as part of the Stimulus Bill actually, there was a real incentive to get doctors and hospitals off of paper and it's worked. And we now have 80 percent of hospitals in the country and over half of all outpatient (word?) that are eligible for the program are now in the program. And they've made a move towards meeting certain standards. And one of those standards is, if the patient asks for their records they can get an electronic copy of it.

NNAMDIJoe, how does your organization, the Patient-Centered Outcomes Research Institute address questions that patients want answered and how does it involved patients in the research?

SELBYThanks. You asked the question just at the beginning of this segment, do you have the information you need.

NNAMDICorrect.

SELBYAnd it is a fact that as patients face decisions, and even as their clinicians face decisions about what treatment choice makes the most sense, over 50 percent of the time we really don't have that evidence. Shocking because of all the research that's been done, all the research that's available. But much of health care is still practiced -- many decisions are made without good evidence, particularly when we think about the fact that patients are different.

SELBYSo PCORI, the Patient-Centered Outcomes Research Institute aims to do one thing and that is conduct research that answers questions that patients face, patients, their caregivers and their clinicians. That's different than the motivation for most research to date.

NNAMDIHow does that process help consumers make well-informed health care decisions?

SELBYWell, it's -- in the previous segment we talked about the environment we live in in the United States where with fee-for-service medicine for the most part, there's a lot of pressure to do more. And when you put that together with the fact that we really don't know many times whether doing a particular procedure is going to benefit a person or not, whether it's the right decision, you put that together with the pressure, and more often than not the procedure gets done. More evidence about whether this procedure, this medication, this behavior change is really valuable will help patients make more informed decisions and have better health outcomes.

NNAMDIFarzad Mostashari.

MOSTASHARIYeah, I mean, I think what Joe talks about is exactly right. And there's some things that, in fact, we know don't help. And if you do things to people that we know don't help, that's harm. So that's the first thing is, let's not do things to people that we know don't help. And every day we're wasting tons of money, but more importantly we're harming people by doing things that we know don't work. So that's one.

MOSTASHARIThe second is, when we do things and we don't know -- legitimately we don't know if it works or not, we don't learn from that. And that's the other part that I think that the Patient-Centered Outcomes Research Institute is going to help us, that if we do things where there is a gap in evidence, that's okay. You know, but let's learn from it instead of just doing it and keep doing it in a blind random manner.

NNAMDIJoe Selby.

SELBYSo we've talked about the power of data for the individual patient. Knowledge of their risk factor levels and knowledge of the treatments they're on is very valuable for decision making. We've talked about -- in the earlier segment we talked about the value of data for measuring the performance of systems and actually maybe for helping you choose which hospital or doctor you want to go to. But to my mind, at least as powerful is when patients put their data together -- hundreds and thousands and millions of patients put their data together to answer the questions that those patients have.

SELBYSo data is powerful when it's aggregated. And with the spread of the electronic medical record, we've got that data out there. It is not yet well tapped and it's part of our mission.

NNAMDIWell, following up on that, part of your group's mission is to engage patients and other stakeholders in research studies. Why should consumers contribute their health information to researchers? What are the benefits for the individuals?

SELBYI think there's a lot of benefits. We meet a lot of patients in our work and we meet a lot of patients who've had an experience that they didn't like in the health care system. We meet a lot of patients who've lost a family member or who have a family member that's affected. And there is wide spread dissatisfaction often with the health care they're receiving. So patients should care because getting involved in research gives them some control over the questions that are asked, the way that the research is done and what's done with the data when the study is finished.

NNAMDIAs far as a patient who is looking for say, oh, immunization records, once had to call all previous health care providers just to track those records down. And sometimes retrieving the records could take days, weeks. How can patients expect those kinds of experiences with health care services to change as doctors adopt new technology?

MOSTASHARIIt does get back to being able to get your own data. Increasingly there are places where that information is not kept electronically. There are state immunization registries, you know, in most states and jurisdictions. But patients can't get it. They have to go through the doctor's office. And if you're in a doctor's office, pediatrician's office in August and September, you know what you're doing. You're responding to parents who need their kids immunization records. And it's a real drag for everybody involved and it's a cost for everybody involved.

MOSTASHARIWell, we've worked now with I think it's up to 11 states that are working towards giving patients direct access -- parents' direct access to their kids' immunization records as one example. But I think more fundamentally across -- aside from just immunizations, if your records from the doctor's office and hospital or your health plan is something that you can download, not only can you look at it, but there can be all sorts of new services and new products and new apps that will use that raw data as oxygen, as fuel, to create new services to help you understand your medication adherence or what this problem -- what other people with this problem have experienced, or how to manage your health care finances.

MOSTASHARIAnd that's the really exciting thing here is to really spark through the availability of data to spark an entirely new industry aimed at not making silly games, but helping people with the most important thing which is their health and their life.

NNAMDIBut most of us tend to think that our doctor is in charge, so to speak, of our health information. What opportunities are there, or will there be for patients to manage their personal health information independently of their provider?

MOSTASHARISo let me give you a real life example. My mom is on Medicare, and there is now -- Medicare lets you download three years of every claim Medicare has paid for you, to any provider. It includes her medications claims that they've paid. It's includes the hospital claims, it includes the doctor claims. And then she can take that data, and she can use an app, and this is free now folks. If you know anyone on Medicare, go out and do this. Go to mymedicare.gov, sign up for the program and click that download my blue button program. Go to the app store, Android or Apple, and search for blue button, all right?

MOSTASHARIThat's what this idea is, you can now see all the different docs she's seen, let me tell you, I guarantee you, none of those docs know all the docs' information. There is so much information that is spread out so many different places, and really the only common denominator in this is her. So giving her the ability to get her information and to share it with who she wants to share it with is something that isn't just, you know, her right under HIPAA, it's the right thing to do.

NNAMDILet's hear from Howard in Takoma Park, Md. Howard, you're on the air. Go ahead, please.

HOWARDHi Kojo. Thank you so much for taking my call. I'm sort of excited to call because I feel like I have this sort of secret to tell you that maybe some of your -- you and maybe your listeners don't know, but we already have a terrific health care system available in the District and the Maryland suburbs that allows patients complete access to their medical record. You can, with a button, create a printout with a wallet card with all your medical conditions, allergies and medicines, you can easily search all of your previous visits, find out what the doctor wrote in terms of instructions, and this is Kaiser Permanente.

HOWARDKaiser Permanente is -- it's a pre-paid health maintenance company that provides health care for about half a million people in the district and Maryland suburbs and northern Virginia, and it's been around for 30 years, and growing. So I just wanted to throw that out there.

NNAMDI-- big secret actually. There's a lot of people who are familiar with Kaiser Permanente, and who are signed onto Kaiser Permanente, but thank you very much for your call. We do have to take a short break. If you'd like to call us, the number is 800-433-8850. How has technology like mobile apps or online health records changed your experience with health care? 800-433-8850. Send email to kojo@wamu.org, or just send us a tweet @kojoshow. I'm Kojo Nnamdi.

NNAMDIIt's the Health Datapalooza, the Omni Shoreham in Washington where we're discussing how long to be a savvy consumer of health care, and inviting your calls at 800-433-8850. We're talking with Farzad Mostashari. He is the national coordinator for health IT at the U.S. Department of Health and Human Services, and Joe Selby, executive director of the Patients Centered Outcomes Research Institute, which examines the health outcomes of different medical treatments. And before we took that break, Farzad, we had a caller who wanted to talk about what Kaiser Permanente has to offer.

MOSTASHARIYeah. And, you know, they mentioned that Kaiser is a pre-paid plan, which means that they get paid up front. And they have to then manage the total cost for the patient, oftentimes over years. This means they have the incentive to do prevention, and that's fundamentally different from most of the incentives that we have in the -- the previous panel was talking about the fee-for-service system where you get paid based on how much you do, not how healthy you keep people.

MOSTASHARISo Kaiser, because it made sense for them, have invested in not just the technology to do prevention better, and they do it very well, but they've also invested in the technology to engage better with patients. So that, I think, brings together very clearly how the incentives in our health care system matter to how that health care is delivered, and the good news is that we are moving, not necessarily in the direction of everyone being on a pre-paid plan, but in the direction where health care providers will get more payment if they keep people healthier, and that's a very good thing.

NNAMDIAnd Joe Selby, we were also talking about independently managing your own health care. You want to talk about shared management.

SELBYI do, but I'd like to just also pile on a bit about Kaiser Permanente. I had the pleasure and privilege of being the director of research at Kaiser Permanente in northern California for the 13 years before I came to PCORI, and each of Kaiser's eight regions has a research unit including the region here in the mid-Atlantic states, and that is where of I speak when I say that there is power in putting electronic health record data together. I saw research that showed that screening for colorectal cancer saved lives dramatically, that heart attack rates were declining, that vaccines saved children's lives and prevented previously horrible diseases, and that new models of delivering care for mental health conditions, chemical dependency conditions, really worked.

SELBYSo electronic health record data, when put together in large numbers, is a great way to find out what works for whom in typical research settings. But you're right, I did want to say a word -- you had asked the question about independent patients making independent decisions, and I'd just like to say that more often than not, the best decisions are made when clinicians and patients share the decision-making process. But both patients and clinicians suffer from an absence of information when there's not an electronic health record, when the data are in a chart off in another emergency department, or when there's not good evidence.

SELBYSo part of what PCORI does is generate the new evidence. Another part of what PCORI does is put that evidence into tools that patients and clinicians together can use to understand the evidence and then to make the best tailored decision for that patient. So we do know that when patients and clinicians participate in shared decision making, patients are more happy with the decisions, and oftentimes they choose a somewhat more conservative route then when the physician is left alone to make a recommendation. So you actually see patients choosing sometimes not to undergo a procedure which they might have if they hadn't participated in that process.

NNAMDIHere is Dwayne in Laurel, Md. Dwayne, your turn.

DWAYNEYeah. Just one basic comment I wanted to make. I know we talked about patients being able to get their records. One of the things that we've noticed is that a lot of docs, even here in the Maryland/DC area, still do not have electronic medical record systems. So many of those records are still in paper form. So a lot of the users need -- and patients need to know that their records may not be necessarily accessible at this time online on through some exchange.

DWAYNEI think in terms of it's probably -- we're probably about five or seven years out before we really see that really being able to work. The second item is also with the available data. We're talking about outcome. A lot of that information, it has the same issue that many of the physicians that are practicing in this area still do not even participate in those plans. So we still have some work to do left.

NNAMDIOkay. Thank you very much for your call. I've read estimates will cost doctors approximately maybe 30 to $40,000 to make sure that all of their records in future are electronic. I don't know, Farzad, care to comment?

MOSTASHARIIt has been a cost issue, and it's also been a challenge for them to do this change. It's a big change in how the office works, and we actually have put boots on the ground in local technical assistance to help primary care docs make that switch over. Huge numbers of them have. We have over a hundred and forty thousand primary care docs working with our extension program to get to out there, and adoption of electronic health records has doubled and tripled in outpatient providers just in the past few years.

MOSTASHARISo we've made more progress than we've done in the 25 years before that, and I expect that we'll be there sooner rather than later. I expect that we'll cross that mark where almost every provider you go to -- well, let me put it another way, you won't want to go to a doctor that's still on paper pretty soon.

NNAMDIYes. We have a questioner here in the room.

NANCYHi. I'm Nancy. I'm from Hennepin County Medical Center, which is a safety net care system in Minneapolis, and my question is, how do we ensure that we don't leave behind the most vulnerable populations as we work towards advancing consumer-centered health IT capabilities?

NNAMDIJoe Selby?

SELBYWell, actually, some of the good news, I think, is that many patients in the safety net, many patients who receive their care from safety net clinics and county health systems actually were among the first patients to be exposed to electronic health records, and they showed up there first. So that's one good piece of news. I think from PCORI's point of view, we -- it's one of our priorities to support research that aims to eliminate disparities in health and in health care, and you only do that by conducting studies among those patients and in those care settings.

SELBYSo we're particularly interested in harnessing electronic health records, and involving patients in those settings to ask and answer questions that can improve their care and outcomes.

MOSTASHARII want to thank you -- this is Farzad. I want to thank you for your question because while we work with the market, the market doesn't care if the benefits of a technology are available to everybody, right? The market doesn't care, but government cares. That's part of the role for government is to make sure that the benefits are available to all, and doing what we can to reduce disparities. So I mention those extension centers, they prioritize and they focus on Medicaid populations on rural health clinics, on critical access hospitals.

MOSTASHARIWe also have to, I think, recognize that there's some advantages for these technologies for leapfrogging. So cell phone technology, right? Mobile health tends to be actually more available to minority populations than it is -- then our traditional landline Internet access. So that gives us -- the mobile health revolution lets us leapfrog over and help reduce health disparities and reach that population even more -- engage them even better.

MOSTASHARIThe one issue I'll also raise is around translations. We do have a need for translation of medical information to different languages but also to plain English, and I think liberating the data in a structured, coded way makes it possible for other people to build translation perhaps to bring it into different languages in a way that's simply not possible with hand-scribbled, you know, notes in a paper chart.

NNAMDIAny further questions? Okay. Thank you very much. We'll move onto Dennis in Washington DC. Dennis, you're on the air. Go ahead, please.

DENNISHi. Thank you very much, Kojo. I've worked with the National Business Coalition on Health has put together some standards for personal health records and I want to make a couple comments and get some reaction if I could. One about the complexity of personal health records or what they could bring to the table, and the functionality of it. On the complexity side, you know, if you think about all the moving parts here, it's a rare source that has all of them put together. Lab results are different from health claims that are made are different from pharmaceutical fills, so there's an orchestration that may come into complexity here.

DENNISNow, an organization like Kaiser, you know, has all these things together, but even they, I think, are challenged on the functionality side which sort of the says to me as a consumer, I'm not going to go and A, populate this, so it has to be prepopulated for me, and B, I don't have the time for this. So rather than making me go to the medical record, there should be some functionality that talks to me. A health plan knows who I am by virtue of a lot of the claims I made. They know if I'm diabetic, and so they can orchestrate all this stuff and help me if my lab result is out of scale, they should be notifying me to get back in control and maybe to come in for a visit. So I hope that the people present can talk about the opportunities for functionality and also the complexity.

NNAMDIThat seemed to be part of the point that Joe Selby was making when he talked about shared management.

SELBYWell, first of all, I think the caller's comments are right on the mark. Data and medical information is complex and it does take some work. But I think that having patients involved in the process of designing and evaluating and refining these tools and these apps and these records is certainly a part of solution to determine whether they're useable. But I couldn't agree more with you that, you know, that we need to prepopulate these whenever possible, and we need to make them accessible, or they are little better than a paper record.

NNAMDIAnd we got an email from someone who says, "How can innovative uses of data, such as some of the examples from the Heritage Health Challenge which took a historic data set and challenged people to predict who would be hospitalized first, how could something like that help patients understand their own health data?" Farzad?

MOSTASHARIYou know, the key to communicating sometimes is moving past complexity to simplicity. Being able to use visualizations for example, or clean, simple designs to take a mass of information and to make it understandable and more importantly actionable, to get to the so what of it. And I see a huge role for data science, not only in helping us crunch through huge amounts of data, but also in helping us simplify the so what and to create beautiful designs that speak to people. We actually did a --

NNAMDIAnd I'm afraid that's about all the time we have. Farzad Mostashari is the national coordinator for health IT at the U.S. Department of Health and Human Services. Farzad, thank you so much for joining us.

MOSTASHARIThank you, Kojo.

NNAMDIJoe Selby, executive director of the Patients Centered Outcomes Research Institute, which examines the health outcomes of different medical treatments. Joe Selby, thank you for joining us.

SELBYReal pleasure.

NNAMDISpecial thanks for our presence here today to Brian Sivak, Greg Downing, Stacey Elmer, Reed Holman (sp?) at the Department of Health and Human Services. Also thanks to Megan Cummings, Stephanie Thompson, Ian Campbell, and the folks at the Omni Shoreham event HQ and Linder and Associates. At WAMU this broadcast was made possible by engineers Jonathan Cherry, Tobey Schreiner, and Kellan Quigley. Special thanks to Brian George for connecting our makeshift studio at the Omni to the mothership at WAMU 88.5.

NNAMDI"Kojo Nnamdi Show" producers, Ingalisa Schrobsdorff and Kathy Goldgeier were lead producers with help from Brendan Sweeney our managing producer, Stephannie Stokes, Michael Martinez, Tayla Burney, Rebecca Blatt and Karen Munson. And thank you all for being here, and thank you all for listening. I'm Kojo Nnamdi.