E-Patient Dave Says We Still Need Better Access to our Health Data

The podcast is back with a new name and a new, expanded focus! Harry will soon be publishing his new book The Future You: How Artificial Intelligence Can Help You Get Healthier, Stress Less, and Live Longer. Like his previous book MoneyBall Medicine, it’s all about AI and the other big technologies that are transforming healthcare. But this time Harry takes the consumer’s point of view, sharing tips, techniques, and insights we can all use to become smarter, more proactive participants in our own health.

The show’s first guest under this expanded mission is Dave deBronkart, better known as “E-Patient Dave” for his relentless efforts to persuade medical providers to cede control over health data and make patients into more equal partners in their own care. Dave explains how he got his nickname, why it’s so important for patients to be more engaged in the healthcare system, and what kinds of technology changes at hospitals and physician practices can facilitate that engagement.

Today we’re bringing you the first half of Harry and Dave’s wide-ranging conversation, and we’ll be back on October 12 with Part 2.

Dave deBronkart is the author of the highly rated Let Patients Help: A Patient Engagement Handbook and one of the world’s leading advocates for patient engagement. After beating stage IV kidney cancer in 2007, he became a blogger, health policy advisor, and international keynote speaker, and today is the best-known spokesman for the patient engagement movement. He is the co-founder and chair emeritus of the Society for Participatory Medicine, and has been quoted in TimeU.S. NewsUSA TodayWiredMIT Technology Review, and the HealthLeaders cover story “Patient of the Future.” His writings have been published in the British Medical Journal, the Patient Experience Journal,  iHealthBeat, and the conference journal of the American Society for Clinical Oncology. Dave’s 2011 TEDx talk went viral, and is one the most viewed TED Talks of all time with nearly 700,000 views.

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Full Transcript

Harry Glorikian: Hello. I’m Harry Glorikian. Welcome to The Harry Glorikian Show.

You heard me right! The podcast has a new name.

And as you’re about to learn, we have an exciting new focus. But we’re coming to you in the same feed as our old show, MoneyBall Medicine. So if you were already subscribed to the show in your favorite podcast app, you don’t have to do anything! Just keep listening as we publish new episodes. If you’re not a regular listener, please take a second to hit the Subscribe or Follow button right now. And thank you.

Okay. So. Why are we rebranding the show?

Well, I’ve got some exciting news to share. Soon we’ll be publishing my new book, The Future YouHow Artificial Intelligence Can Help You Get Healthier, Stress Less, and Live Longer. It’s all about how AI and big data are changing almost everything we know about our healthcare.

Now, that might sound a bit like my last book, MoneyBall Medicine. But I wrote that book mainly to inform all the industry insiders who deliver healthcare. Like people who work at pharmaceutical companies, hospitals, health plans, insurance companies, and health-tech startups.

With this new book, The Future You, I’m turning the lens around and I’m explaining the impact of the AI revolution on people who consume healthcare. Which, of course, means everyone. That impact is going to be significant, and it’s going to change everything from the way you interact with your doctors, to the kind of medicines you take, to the ways you stay fit and healthy.

We want you to be prepared for this new world. So we’re expanding the focus of the podcast, too. To go along with the new name, we’re bringing you interviews with a new lineup of fascinating people who are changing the way patients experience healthcare.

And there’s nobody better to start out with than today’s guest, Dave deBronkart.

Dave is best known by the moniker he earned back in the late 2000s: E-Patient Dave. We’ll talk about what the E stands for. But all you need to know going in is that ever since 2007, when he survived his own fight with kidney cancer, Dave has been a relentless, tireless advocate for the idea that the U.S. medical system needs to open up so that patients can play a more central role in their own healthcare. He’s pushed for changes that would give patients more access to their medical records. And he hasn’t been afraid to call out the institutions that are doing a poor job at that. In fact, some folks inside the business of healthcare might even call Dave an irritant or a gadfly. But you know what? Sometimes the world needs people who aren’t afraid to shake things up.

And what’s amazing is that in the years since Dave threw himself into this debate, the world of healthcare policy has started to catch up with him. The Affordable Care Act created big incentives for hospitals and physician practices to switch over to digital recordkeeping. In 2016 the Twenty-First Century Cures Act prohibited providers from blocking access to patients’ electronic health information. And now there’s a new interface standard called FHIR that promises to do for medical records what HTML and HTTP did for the World Wide Web, and make all our health data more shareable, from our hospital records to our genomics data to the fitness info on our smartphones.

But there’s a lot of work left to do. And Dave and I had such a deep and detailed conversation about his past work and how patients experience healthcare today that we’re going to break up the interview into two parts. Today we’ll play the first half of our interview. And in two weeks we’ll be back with Part 2.

Here we go.

Harry Glorikian: Dave, welcome to the show.

Dave deBronkart: Thank you so much. This is a fascinating subject, I love your angle on the whole subject of medicine.

Harry Glorikian: Thank you. Thank you. So, Dave, I mean, you have been known widely as what’s termed as E-patient Dave. And that’s like a nickname you’ve been using in public discussions for, God, at least a decade, as far as I can remember. But a lot of our listeners haven’t heard about that jargon word E-patient or know what E stands for. To me, it means somebody who is assertive or provocative when it comes to managing their own health, you know, with added element of being, say, tech savvy or knowing how to use the Internet, you know, mobile, wearable devices and other digital tools to monitor and organize and direct their own care—-all of which happens to describe the type of reader I had in mind when I wrote this new book that I have coming out called The Future You. So how would you describe what E- patient [means]?

Dave deBronkart: You know, it’s funny because when you see an E-patient or talk with them, they don’t stick out as a particularly odd, nerdy, unusual sort of person. But the the term, we can get into its origins back in the 90s someday if you want to, the term has to do with somebody who is involved. What today is in medicine is called patient engagement. And it’s funny because to a lot of people in health care, patient engagement means getting the patient to do what they tell us to. Right. Well, tvhere’s somebody who’s actually an activated, thinking patient, like, I’m engaged in the sense that I want to tell you what’s important to me. Right. And I don’t just want to do what I’m told. I want to educate myself. That’s another version of the E. In general, it means empowered, engaged, equipped, enabled. And these days, as you point out, naturally, anybody who’s empowered, engaged and enabled is going to be doing digital things, you know, which weren’t possible 20 years ago when the term patient was invented.

Harry Glorikian: Yeah, and it’s interesting because I was thinking like the E could stand for so many things like, you know, electronic, empowered, engaged, equipped, enabled, right. All of the above. Right. And, you know, I mean, at some point, you know, I do want to talk about access, right, to all levels. But just out of curiosity, right, you’ve been doing this for a long time, and I’m sure that people have reached out to you. How many E-patients do you think are out there, or as a proportion of all patients at this point?

Dave deBronkart: You know, that depends a lot on demographics and stage of life. The, not surprisingly, digital natives are more likely to be actively involved in things just because they’re so digital. And these days, by federal policy, we have the ability to look at parts of our medical information online if we want to. As opposed to older people in general are more likely to say just what the doctors do, what they want to. It’s funny, because my parents, my dad died a few years ago. My mother’s 92. We’re very different on this. My dad was “Let them do their work.” And my mother is just all over knowing what’s going on. And it’s a good thing because twice in the last five years, important mistakes were found in her medical record, you know. So what we’re at here, this is in addition to the scientific and technological and data oriented changes that the Internet has brought along. We’re also in the early stages of what is clearly going to be a massive sociological revolution. And it has strong parallels. I first had this idea years ago in a blog post, but I was a hippie in the 60s and 70s, and I lived through the women’s movement as it swept through Boston. And so I’ve seen lots of parallels. You go back 100 years. I think the you know, we recently hit the 100th anniversary of the 19th Amendment, giving women the right to vote. There were skeptics when the idea was proposed and those skeptics opinions and the things they said and wrote have splendid parallels with many physicians’ beliefs about patients.

Dave deBronkart: As one example I blogged some years ago, I can send you a link about a wonderful flyer published in 1912 by the National Association Opposed to Women’s Suffrage. And it included such spectacular logic as for, I mean, their bullets, their talking points, why we should not give women the vote, the first was “Most women aren’t asking for it.” Which is precisely parallel to “Most patients aren’t acting like Dave, right? So why should we accommodate, why should we adjust? Why should we provide for that? The second thing, and this is another part, is really a nastier part of the social revolution. The second talking point was “Most women eligible to vote are married and all they could do is duplicate or cancel their husband’s vote.” It’s like, what are you thinking? The underlying is we’ve already got somebody who’s voting. Why do we need to bring in somebody else who could only muddy the picture? And clearly all they could do is duplicate or cancel their husband’s vote. Just says that the women or the patients, all right, all I could do is get in the way and not improve anything. I bring this up because it’s a real mental error for people to say I don’t know a lot of E-patients. So it must not be worth thinking about.

Harry Glorikian: Yeah, I mean, so, just as a preview so of what we’re going to talk about, what’s your high-level argument for how we could make it easier for traditional patients to become E-patients?

Dave deBronkart: Well, several dimensions on that. The most important thing, though, the most important thing is data and the apps.

Harry Glorikian: Yes.

Dave deBronkart: When people don’t have access to their information, it’s much harder for them to ask an intelligent question. It’s like, hey, I just noticed this. Why didn’t we do something? What’s this about? Right. And now the flip side of it and of course, there’s something I’m sure we’ll be talking about is the so-called final rule that was just published in April of this year or just took effect of this year, that says over the course of the next year, all of our data in medical records systems has to be made available to us through APIs, which means there will be all these apps. And to anybody middle aged who thinks I don’t really care that much, all you have to do is think about when it comes down to taking care of your kids or your parents when you want to know what’s going on with them.

Harry Glorikian: Would you think there would be more E-patients if the health care system gave them easier access to their data? What are some of the big roadblocks right now?

Dave deBronkart: Well, one big roadblock is that even though this final federal rule has come out now, the American Medical Group Management Association is pushing back, saying, “Wait, wait, wait, this is a bad idea. We don’t need patients getting in the way of what doctors are already doing.” There will be foot dragging. There’s no question about that. Part of that is craven commercial interests. There are and there have been numerous cases of hospital administrators explicitly saying — there’s one recording from the Connected Health conference a few years ago, Harlan Krumholtz, a cardiologist at Yale, quoted a hospital president who told him, “Why wouldn’t I want to make it a little harder for people to take their business elsewhere?”

Harry Glorikian: Well, if I remember correctly, I think it was the CEO of Epic who said, “Why would anybody want their data?”

Dave deBronkart: Yes. Well, first of all, why I would want my data is none of her damn business. Well, and but that’s what Joe Biden — this was a conversation with Joe Biden. Now, Joe has a, what, the specific thing was, why would you want to see your data? It’s 10,000 pages of which you would understand maybe 100. And what he said was, “None of your damn business. And I’ll find people that help me understand the parts I want.”

Harry Glorikian: Yeah. And so but it’s so interesting, right? Because I believe right now we’re in a we’re in a state of a push me, pull you. Right? So if you look at, when you said apps, I think Apple, Microsoft, Google, all these guys would love this data to be accessible because they can then apps can be available to make it more understandable or accessible to a patient population. I mean, I have sleep apps. I have, you know, I just got a CGM, which is under my shirt here, so that I can see how different foods affect me from, you know, and glucose, insulin level. And, you know, I’m wearing my Apple Watch, which tracks me. I mean, this is all interpretable because there are apps that are trying to at least explain what’s happening to me physiologically or at least look at my data. And the other day I was talking to, I interviewed the CEO of a company called Seqster, which allows you to download your entire record. And it was interesting because there were some of the panels that I looked at that some of the numbers looked off for a long period of time, so I’m like, I need to talk to my doctor about those particular ones that are off. But they’re still somewhat of a, you know, I’m in the business, you’ve almost learned the business. There’s still an educational level that and in our arcane jargon that gets used that sort of, you know, everybody can’t very easily cross that dimension.

Dave deBronkart: Ah, so what? So what? Ok, this is, that’s a beautiful observation because you’re right, it’s not easy for people to absorb. Not everybody, not off the bat. Look, and I don’t claim that I’m a doctor. You know, I still go to doctors. I go to physical therapists and so on and so on. And that is no reason to keep us apart from the data. Some doctors and Judy Faulkner of Epic will say, you know, you’ll scare yourself, you’re better off not knowing. Well, ladies and gentlemen, welcome to the classic specimen called paternalism. “No, honey, you won’t understand.” Right now paternal — this is important because this is a major change enabled by technology and data, right — the paternal caring is incredibly important when the cared-for party cannot comprehend. And so the art of optimizing and this is where MoneyBall thinking comes in. The art of optimizing is to understand people’s evolving capacity and support them in developing that capacity so that the net sum of all the people working on my health care has more competence because I do.

Harry Glorikian: Right. And that’s where I believe like. You know, hopefully my book The Future You will help people see that they’re, and I can see technology apps evolving that are making it easier graphically, making it more digestible so someone can manage themselves more appropriately and optimally. But you mentioned your cancer. And I want to go and at least for the listeners, you know, go a little bit through your biography, your personal history, sort of helping set the stage of why we’re having this conversation. So you started your professional work in, I think it was typesetting and then later software development, which is a far cry from E-patient Dave, right? But what what qualities or experiences, do you think, predisposed you to be an E-patient? Is it fair to say that you were already pretty tech savvy or but would you consider yourself unusually so?

Dave deBronkart: Well, you know, the unusually so, I mean, I’m not sure there’s a valid reason for that question to be relevant. There are in any field, there are pioneers, you know, the first people who do something. I mean, think about the movie Lorenzo’s Oil, people back in the 1980s who greatly extended their child’s life by being so super engaged and hunting and hunting through libraries and phone calls. That was before there was the Internet. I was online. So here are some examples of how I, and I mentioned that my daughter was gestating in 1983. I took a snapshot of her ultrasound and had it framed and sitting on my office desk at work, and people would say, what’s that? Nobody knew that that was going to be a thing now and now commonplace thing. In 1999, I met my second wife online on Match.com. And when I first started mentioning this in speeches, people were like, “Whoa, you found your wife on the Internet?” Well, so here’s the thing, 20 years later, it’s like no big deal. But that’s right. If you want to think about the future, you better be thinking about or at least you have every right to be thinking about what are the emerging possibilities.

Harry Glorikian: So, tell us the story about your, you know, renal cancer diagnosis in 2007. I mean, you got better, thank God. And you know, what experience it taught you about the power of patients to become involved in their decision making about the course of treatment?

Dave deBronkart: So I want to mention that I’m right in the middle of reading on audio, a book that I’d never heard of by a doctor who nearly died. It’s titled In Shock. And I’m going to recommend it for the way she tells the story of being a patient, observing the near fatal process. And as a newly trained doctor. In my case, I went in for a routine physical. I had a shoulder X-ray and the doctor called me the next morning and said, “Your shoulder is going to be fine, but the X-ray showed that there’s something in your lung that shouldn’t be there.” And to make a long story short, what we soon found out was that it was kidney cancer that had already spread. I had five tumors, kidney cancer tumors in both lungs. We soon learned that I had one growing in my skull, a bone metastasis. I had one in my right femur and my thigh bone, which broke in May. I now have a steel rod in my in my thigh. I was really sick. And the best available data, there wasn’t much good data, but the best available data said that my median survival. Half the people like me would be dead in 24 weeks. 24 weeks!

Harry Glorikian: Yeah.

Dave deBronkart: And now a really pivotal moment was that as soon as the biopsy confirmed the disease, that it was kidney cancer, my physician, the famous doctor, Danny Sands, my PCP, because he knew me so well — and this is why I hate any company that thinks doctors are interchangeable, OK? They they should all fry in hell. They’re doing it wrong. They should have their license to do business removed — because he knew me he said, “Dave, you’re an online kind of guy. You might like to join this patient community.” Now, think how important this is. This was January 2007, not 2021. Right. Today, many doctors still say stay off the Internet. Dr. Sands showed me where to find the good stuff.

Harry Glorikian: Right. Yeah, that’s important.

Dave deBronkart: Well, right, exactly. So now and this turned out to be part of my surviving. Within two hours of posting my first message in that online community, I heard back. “Thanks for the, welcome to the club that nobody wants to join.” Now, that might sound foolish, but I’d never known anybody who had kidney cancer. And here I am thinking I’m likely to die. But now I’m talking to people who got diagnosed 10 years ago and they’re not dead. Right? Opening a mental space of hope is a huge factor in a person having the push to move forward. And they said there’s no cure for this disease. That was not good news. But the but there’s this one thing called high dose Interleukin 2. That usually doesn’t work. So this was the patient community telling me usually doesn’t work. But if you respond at all, about half the time, the response is complete and permanent. And you’ve got to find a hospital that does it because it’s really difficult. And most hospitals won’t even tell you it exists because it’s difficult and the odds are bad. And here are four doctors in your area who do it, and here are their phone numbers. Now, ladies and gentlemen, I assert that from the point of view of the consumer, the person who has the need, this is valuable information. Harry, this is such a profound case for patient autonomy. We are all aware that physicians today are very overworked, they’re under financial pressure from the evil insurance companies and their employers who get their money from the insurance companies. For a patient to be able to define their own priorities and bring additional information to the table should never be prohibited. At the same time, we have to realize that, you know, the doctors are under time pressure anyway. To make a long story short, they said this this treatment usually doesn’t work. They also said when it does work, about four percent of the time, the side effects kill people.

Harry Glorikian: So here’s a question. Here’s a question, though, Dave. So, you know, being in this world for my entire career, it’s my first question is, you see something posted in a club, a space. How do you validate that this is real, right, that it’s bona fide, that it’s not just…I mean, as we’ve seen because of this whole vaccine, there’s stuff online that makes my head want to explode because I know that it’s not real just by looking at it. How do you as as a patient validate whether this is real, when it’s not coming from a, you know, certified professional?

Dave deBronkart: It’s a perfect question for the whole concept of The Future You. The future you has more autonomy and more freedom to do things, has more information. You could say that’s the good news. The bad news is you’ve got all this information now and there’s no certain source of authority. So here you are, you’re just like emancipation of a teenager into the adult life. You have to learn how to figure out who you trust. Yeah, the the good news is you’ve got some autonomy and some ability to act, some agency, as people say. The bad news is you get to live with the consequences as well. But don’t just think “That’s it, I’m going to go back and let the doctors make all the decisions, because they’re perfect,” because they’re not, you know, medical errors happen. Diagnostic errors happen. The overall. The good news is that you are in a position to raise the overall level of quality of the conversations.

Harry Glorikian: So, you know, talk about your journey after your cancer diagnosis from, say, average patient to E-patient to, now, you’re a prominent open data advocate in health care.

Dave deBronkart: Yes. So I just want to close the loop on what happened, because although I was diagnosed in January, the kidney came out in March, and my interleukin treatments started in April. And by July, six months after diagnosis, by July, the treatment had ended and I was all better. It’s an immunotherapy. When immunotherapy works, it’s incredible because follow up scans showed the remaining tumors all through my body shrinking for the next two years. And so I was like, go out and play! And I started blogging. I mean, I had really I had pictured my mother’s face at my funeral. It’s a, it’s a grim thought. But that’s how perhaps one of my strengths was that I was willing to look that situation in the eye, which let me then move forward. But in 2008, I just started blogging about health care and statistics and anything I felt like. And in 2009 something that — I’m actually about to publish a free eBook about that, it’s just it’s a compilation of the 12 blog posts that led to the world exploding on me late in 2008 — the financial structure of the U.S. health system meant that even though we’re the most expensive system in the world, 50 percent more expensive than the second place country, if we could somehow fix that, because we’re the most expensive and we don’t have the best outcomes, so some money’s being wasted there somewhere. All right. If we could somehow fix that, it would mean an immense amount of revenue for some companies somewhere was going to disappear.

Dave deBronkart: Back then, it was $2.4 trillion, was the US health system. Now it’s $4 trillion. And I realized if we could cut out the one third that excess, that would be $800 billion that would disappear. And that was, I think, three times as much as if Google went out of business, Apple went out of business and and Microsoft, something like that. So I thought if we want to improve how the system works, I’m happy if there are think tanks that are rethinking everything, but for you and me in this century, we got to get in control of our health. And that had to start with having access to our data. All right. And totally, unbeknownst to me, when the Obama administration came in in early 2009, this big bill was passed, the Recovery Act, that included $40 billion of incentives for hospitals to install medical computers. And one of the rules that came out of that was that we, the patients, had to be able to look at parts of our stuff. And little did I know I tried to use to try to look at my data. I tried to use the thing back then called Google Health. And what my hospital sent to Google was garbage. And I blogged about it, and to my huge surprise, The Boston Globe newspaper called and said they wanted to write about it, and it wasn’t the local newspaper, it was the Washington health policy desk. And they put it on Page One. And my life spun out of control.

Harry Glorikian: Yeah, no, I remember I remember Google Health and I remember you know, I always try to tell people, medicine was super late to the digitization party. Like if it wasn’t for that the Reinvestment and Recovery Act putting that in place, there would still be file folders in everybody’s office. So we’re still at the baby stage of digitization and then the analytics that go with it. And all I see is the curve moving at a ridiculous rate based on artificial intelligence, machine learning being applied to this, and then the digitized information being able to come into one place. But you said something here that was interesting. You’ve mentioned this phenomenon of garbage in, garbage out. Right. Can you say more about one of the hospitals that treated you? I think it was Beth Israel. You mentioned Google Health. What went wrong there and what were the lessons you took away from that?

Dave deBronkart: Well, there were, so what this revealed to me, much to my amazement, much to my amazement, because I assumed that these genius doctors just had the world’s most amazing computers, right, and the computers that I imagined are the computers that we’re just now beginning to move toward. Right. R\I was wrong. But the other important thing that happened was, you know, the vast majority of our medical records are blocks of text, long paragraphs of text or were back then. Now, it was in a computer then, it wasn’t notes on paper, but it was not the kind of thing you could analyze, any more than you could run a computer program to read a book and write a book report on it. And so but I didn’t know that. I didn’t know what Google Health might do. The next thing that happened was as a result, since Google Health was looking for what’s called structured data — now, a classic example of structured data is your blood pressure. It’s fill in a form, the high number, the low number, what’s your heart rate? What’s your weight, you know? The key value pairs, as some people call them. Very little of my medical history existed in that kind of form. So for some insane reason, what they decided to send Google instead was my insurance billing history.

Dave deBronkart: Now, insurance data is profoundly inappropriate as a model of reality for a number of reasons. One of one reason is that insurance form data buckets don’t have to be very precise. So at one point I was tested for metastases to the brain to see if I had kidney cancer tumors growing in my brain. The answer came back No. All right. Well, there’s only one billing code for it. Metastases to the brain. And that’s a legitimate billing code for either one. But it got sent to Google Health as metastases to the brain, which I never had. All right. Another problem is something called up-coding, where insurance billing clerks are trained you can bill for something based on the keywords that the doctors and nurses put in the computer. So at one point during my treatment, I had a CAT scan of my lungs to look for tumors. And the radiologist noted, by the way, his aorta is slightly enlarged. The billing clerk didn’t care that they were only checking for kidney cancer tumors. The billing clerk saw aorta, enlarged, aneurysm, and billed the insurance company for an aneurysm, which I never had. Corruption. Corruption. People ask, why are our health care costs so high? It’s this system of keyword-driven billing. But then on top of that, I had things that I never had anything like it. There was, when this blew up in the newspaper, the hospital finally released all my insurance billing codes. It turns out they had billed the insurance company for volvulus of the intestine. That’s a lethal kink of the intestine that will kill you in a couple of days if it’s not treated. Never had anything of the sort. Billing fraud.

Harry Glorikian: Interesting.

Dave deBronkart: Anyway, because a random patient had just tried to use Google Health and I knew enough about data from my day job to be able to say, “Wait a minute, this makes no sense, why is all this happening?” And I couldn’t get a straight answer. You know, it’s a common experience. Sometimes you ask a company, “I’ve got a problem. This isn’t right.” And sometimes they just blow you off. Well, that’s what my hospital did to me. I asked about these specific questions and they just blew me off. So then once it was on the front page of the newspaper, the hospital is like, “We will be working with the E-patient Dave and his doctor.” And there’s nothing like publicity, huh?

[musical interlude]

Harry Glorikian: Let’s pause the conversation for a minute to talk about one small but important thing you can do, to help keep the podcast going. And that’s to make it easier for other listeners discover the show by leaving a rating and a review on Apple Podcasts.

All you have to do is open the Apple Podcasts app on your smartphone, search for The Harry Glorikian Show, and scroll down to the Ratings & Reviews section. Tap the stars to rate the show, and then tap the link that says Write a Review to leave your comments. It’ll only take a minute, but you’ll be doing us a huge favor.

And one more thing. If you like the interviews we do here on the show I know you’ll   like my new book, The Future YouHow Artificial Intelligence Can Help You Get Healthier, Stress Less, and Live Longer.

It’s a friendly and accessible tour of all the ways today’s information technologies are helping us diagnose diseases faster, treat them more precisely, and create personalized diet and exercise programs to prevent them in the first place.

The book comes out soon, so keep an eye out for the next announcement.

Thanks. And now back to our show.

[musical interlude]

Harry Glorikian: One of your slogans is “Gimme my damn data,” meaning, you know, your patient records. And so can you summarize first, the state of the art prior to this digital transformation? Why was it historically the case that patients didn’t have easy access to charts from their doctor’s office or their visits? Why has the medical establishment traditionally been reluctant or maybe even unable to share this data?

Dave deBronkart: Well, first, I want to explain the origin of that of that term. Because the speech in September of that year that launched the global speaking had that title. What happened was that summer of 2009, my world was spinning out of control as I tried to answer people’s questions and get involved in the blogging that was going on and health policy arguments in Washington and so on. And so a real visionary in Toronto, a man named Gunther Eisenbach, who had quite a history in pioneering in this area, invited me to give the opening keynote speech for his annual conference in Toronto that fall. And several times during the summer, he asked me a question I’d never been asked. I came to learn that it was normal, but it was “For our brochure, we need to know what do you want to call the speech? What’s the title of the speech?” And I remember very well sitting in my office at work one day saying into the telephone, “I don’t know, just call it ‘Give me my damn data, because you guys can’t be trusted.” And much to my amazement, It stuck.

Dave deBronkart: I want to be clear. Under the 1996 health information law called hip hop, you are entitled to a copy of every single thing they have about you. All right, and a major reason for that. Back in the beginning was to detect mistakes. So it’s interesting because HIPAA arose from health insurance portability. 1996 was when it first became mandatory that you had to be able to take your insurance business elsewhere and therefore your records. And that’s the origin of the requirement that anybody who holds your health information as part of your insurance or anything else has to be really careful about not letting it leak out. And therefore and it has to be accurate. Therefore, you have a right to look at it and get any mistakes fixed. But. Foot dragging, foot dragging, foot dragging. I don’t want to. As we discussed earlier, there are some doctors who simply wanted to keep you captive. But there are also, the data was also handwritten garbage at times, just scribbles that were never intended to be read by anyone other than the person who wrote the note in the first place.

Harry Glorikian: Well, but, you know, I’m not trying to necessarily defend or anything, but but, you know, as you found at Beth Israel Deaconess, and I talk about this in The Future You as well, part of the problem is most of these things that people look at as large electronic health record systems were are still are in my mind designed as accounting and billing systems, not to help the doctors or the patients. And that’s still a major problem. I mean, I think until we have, you know, a Satya Nadella taking over Microsoft where he, you know, went down and started rewriting the code for Microsoft Office, you’re not going to get to management of patients for the betterment of their health as opposed to let me make sure that I bill for that last Tylenol.

Dave deBronkart: Absolutely. Well, and where I think this will end up, and I don’t know if it’ll be five years or 10 or 20, but where this will end up is, the system as it exists now is not sustainable as a platform for patient-centered care. The early stage that we’re seeing now, there is an incredibly important software interface that’s been developed in the last five or six years still going on called FHIR, F-H-I-R. Which is part of that final rule, all that. So all of our data increasingly in the next couple of years has to be available through an API. All right. So, yeah, using FHIR. And I’ve done some early work on collecting my own data from the different doctors in the hospitals I’ve gone to. And what you get what you get when you bring those all in, having told each of them your history and what medications you’re on and so on, is you get the digital equivalent of a fax of all of that from all of them. That’s not coordinated, right. The medication list from one hospital might not match even the structure, much less the content of the medication list. And here’s where it gets tricky, because anybody who’s ever tried to have any mistake fixed at a hospital, like “I discontinued that medicine two years ago,” never mind something like, “No, I never had that diagnosis,” it’s a tedious process, tons of paperwork, and you’ve got to keep track of that because they so often take a long time to get them fixed. And I having been through something similar in graphic arts when desktop publishing took over decades ago. I really wonder, are we will we ultimately end up with all the hospitals getting their act together? Not bloody likely. All right. Or are we more likely to end up with you and me and all of us out here eventually collecting all the data and the big thing the apps will do is organize it, make sense of it. And here’s a juicy thing. It will be able to automatically send off corrections back to the hospital that had the wrong information. And so I really think this will be autonomy enabled by the future, you holding your own like you are the master copy of your medical reality.

Harry Glorikian: Yeah, I always you know, I always tell like what I like having as a longitudinal view of myself so that I can sort of see something happening before it happens. Right. I don’t want to go in once the car is making noise. I like just I’d like to have the warning light go off early before it goes wrong. But. So you mentioned this, but do you have any are there any favorite examples of patient friendly systems or institutions that are doing data access correctly?

Dave deBronkart: I don’t want to finger any particular one as doing a great job, because I haven’t studied it. Ok. I know there are apps, the one that I personally use, which doesn’t yet give me a useful it gives me a pile of fax pages, but it does pull together all the data, it’s it’s not even an app, it’s called My Patient Link. And anybody can get it. It’s free. And as long as the hospitals you’re using have this FHIR software interface, which they’re all required to, by the way, but some still don’t. As long as they do this, My Patient Link will go and pull it all together. Now it’s still up to you to do anything with it. So we’re just at the dawn of the age that I actually envisioned back in 2008 when I decided to do the Google Health thing and the world blew up in my face.

Harry Glorikian: Yeah. I mean, I have access to my chart. And, you know, that’s useful because I can go look at stuff, but I have to admit, and again, this is presentation and sort of making it easy to digest, but Seqster sort of puts it in a graphical format that’s easier for me to sort of absorb. The information is the same. It’s just how it gets communicated to me, which is half the problem. But but, you know, playing devil’s advocate, how useful is the data in the charts, really? I mean, sometimes we talk as if our data is some kind of treasure trove of accurate, actionable data. But you’ve helped show that a lot of it could be, I don’t want to say useless, but there’s errors in it which technically could make it worse than useless. But how do you think about that when you when you think about this?

Dave deBronkart: Very good. First note. First of all, you’re right. It will…a lot of the actual consumer patient value will, and any time I think about that again, I think a lot of young adults, I think of parents taking care of a sick kid, you know, or middle aged people taking care of elders who have many declining conditions. Right. There’s a ton of data that you really don’t care about. All right, it’s sort of it’s like if you use anything like Quicken or Mint, you probably don’t scrutinize every detail that’s in there and look for obscure patterns or so on. But you want to know what’s going on. And here’s the thing. Where the details matter is when trouble hits. And what I guarantee we will see some time, I don’t know if it’ll be five years, 10, or 20, but I guarantee what we will see someday is apps or features within apps that are tuned to a specific problem. If my blood pressure is something I’m…. Six years ago my doctor said, dude, you’re prediabetic, your A1C is too high. Well, that all of a sudden brings my focus on a small set of numbers. And it makes it really important for me to not just be tracking the numbers in the computer, but integrate it with my fitness watch and my diet app.

Harry Glorikian: Right.

Dave deBronkart: Yeah, I lost 30 pounds in a year. And then at the age of 65, I ran a mile for the first time in my life because my behavior changed. My behavior had changed to my benefit, not because of the doctor micromanaging me, but because I was all of a sudden more engaged in getting off my ass and doing something that was important to me.

Harry Glorikian: well, Dave, you need to write a diet book, because I could use I could stand to lose like 10 or 20 pounds.

Dave deBronkart: Well, no, I’m not writing any diet books. That’s a project for another day.

Harry Glorikian: That’s it for this week’s episode. Dave and I had a lot more to talk about, and we’ll bring you the second part of the conversation in the next episode, two weeks from now.

You can find past episodes of The Harry Glorikian Show and MoneyBall Medicine at my website, glorikian.com. Don’t forget to go to Apple Podcasts to leave a rating and review for the show. You can find me on Twitter at hglorikian. And we always love it when listeners post about the show there, or on other social media.

Thanks for listening, stay healthy, and be sure to tune in two weeks from now for our next interview.

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