A New Era of Participatory Medicine: Talking with E-Patient Dave, Part 2

Today we bring you the second half of Harry’s conversation with Dave deBronkart, better known as E-Patient Dave for all the work he’s done to help empower patients to be more involved in their own healthcare. If you missed Part 1 of our interview with Dave, we recommend that you check that out before listening to this one. In that part, we talked about how Dave’s own brush with cancer in 2007 turned him from a regular patient into a kind of super-patient, doing the kind of research to find the medication that ultimately saved his life. And we heard from Dave how the healthcare system in the late 2000s was completely unprepared to help consumers like him who want to access and understand their own data.

Today in Part 2, we’ll talk about how all of that is gradually changing, and why new technologies and standards have the potential to open up a new era of participatory medicine – if, that is, patients are willing to do a little more work to understand their health data, if innovators can get better access to that data, and if doctors are willing to create a partnership with the patients over the process of diagnosis and treatment.

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Full Transcript

Harry Glorikian: Hello. I’m Harry Glorikian. Welcome to The Harry Glorikian Show, the interview podcast that explores how technology is changing everything we know about healthcare.

Artificial intelligence.

Big data.

Predictive analytics.

In fields like these, breakthroughs are happening much faster than most people realize. If you want to be proactive about your own healthcare and the healthcare of your loved ones, you’ll need to some of these new tips and techniques of how medicine is changing and how you can take advantage of all the new options.

Explaining this approaching world is the mission of the new book I have coming out soon, The Future You. And it’s also our theme here on the show, where we’ll bring you conversations with the innovators, caregivers, and patient advocates who are transforming the healthcare system and working to push it in positive directions.

In the previous episode we met Dave deBronkart, better known as E-Patient Dave for all the work he’s done to help empower patients to be more involved in their own healthcare. If you missed it, I’m gonna recommend that you listen to the first discussion, and then come back here.

We talked about how Dave’s own brush with cancer in 2007 turned him from a regular patient into a kind of super-patient, doing the kind of research to find the medication that ultimately saved his life. And we heard from Dave how the healthcare system in the late 2000s was completely unprepared to help consumers like him who want to access and understand their own data.

Today in Part 2, we’ll talk about how all of that is gradually changing, and why new technologies and standards have the potential to open up a new era of participatory medicine – if, that is, patients are willing to do a little more work to understand their health data, if innovators can get better access to that data, and if doctors are willing to create a partnership with the patients over the process of diagnosis and treatment.

We’ll pick up the conversation at a spot where we were talking about that control and the different forms it’s taken over the years.

Harry Glorikian: You’ve observed like that there’s some that there’s this kind of inversion going on right now where for centuries doctors had sole control over patient data and sole claims to knowledge and authority about how patients should be treated. But now patients may have more detailed, more relevant and more up to date data than your doctors does. Right. You’ve talked about this as a Kuhnian paradigm shift, if I remember correctly, where patients are the anomalies, helping to tear down an old paradigm, you know. Walk us through the history here. What was the old paradigm and what’s the new paradigm and what are you some of your favorite examples of this paradigm shift?

Dave deBronkart: Well, so I want to be clear here. I have the deepest admiration for doctors, for physicians and for licensed practitioners at all levels for the training that they went through. I don’t blame any of this on any of them. I did a fair amount of study about what paradigms are Thomas Kuhn’s epic book The Structure of Scientific Revolutions, like discovering that the Earth isn’t the center of the solar system and things like that. The paradigm is an agreement in a scientific field about how things work. And it is the platform, the theoretical model on which all research and further study is done. And these anomalies arise when scientists operating in the field keep finding outcomes that disagree with what the paradigm says. So in the case of the planets circling the earth and the how the solar system works. They discovered that Mars and other planets all of a sudden would stop orbiting and when they would do a little loop de loop. I mean, that’s what they observed. And they came up with more and more tortured explanations until finally, finally, somebody said, hey, guess what? We’re all orbiting the sun. Now, the paradigm inn health care has been that the physician has important knowledge. Lord knows that’s true. The physician has important knowledge and the patient doesn’t and can’t. Therefore, patient should do as they’re told, so called compliance, and should not interfere with the doctors doing their work. Well, now along comes things like all of those things that I mentioned that the patient community told me at the beginning of my cancer. None of that is in the scientific literature. Even here, 15 years later, none of it’s in the literature. What’s going on here? Here’s that first clunk in the paradigm. Right. And we have numerous cases of patients who assisted with the diagnosis. Patients who invented their own treatment. And the shift, the improvement in the paradigm that we have to, where just any scientific thinker — and if you want to be a doctor and you don’t want to be a scientific thinker, then please go away — any scientific thinker has to accept is that it’s now real and legitimate that the patient can be an active person in healthcare.

Dave deBronkart: Yeah, I mean, you’ve said you don’t have to be a scientist or a doctor anymore to create a better way to manage a condition. So, I mean, it’s interesting, right? Because I always think that my doctor and I are partners in this together.

Dave deBronkart: Good participatory medicine. Perfect.

Harry Glorikian: You know, he has knowledge in certain places I definitely don’t. But there are things where him and I, you know, do talk about things that were like, you know, we need to look into that further. Now, I’m lucky I’ve got a curious doctor. I found somebody that I can partner with and that I can think about my own health care in a sort of different way. But I mean, sometimes he doesn’t have all the answers and we have to go search out something. You know, I was asking him some questions about HRV the other day that, you know, he’s like, huh, let me let me ask a few cardiologists, you know, to get some input on this. So do you see that, I mean, I see that as the most desired outcome, where a patient can have their record. They’re not expected to go and become a physician at that level of depth, but that the physicians who also have the record can work in a participatory way with the patient and get to a better outcome.

Dave deBronkart: Exactly. And the other thing that’s happened is and I’ve only recently in the last year come to realize we are at the end of a century that is unique in the history of humanity until science got to a certain point in the late 1800s, most doctors, as caring as they were, had no knowledge of what was going wrong in the body with different diseases. And then and that began a period of many decades where doctors really did know important things that patients had no access to. But that era has ended. All right, we now have more information coming out every day than anyone can be expected to keep up with. And we now are at a point also where we’ve seen stories for decades of patients who were kept alive. But at what cost? Right. Well, and we now we are now entering the point where the definition of best care cannot be made without involving the patient and their priorities. So this is the new world we’re evolving into, like and Dr. Sands wears a button in clinic that says what matters to you?

Harry Glorikian: So I mean, one of the other, based on where you’re going with this, I think is you know, there are some movements that have been arising over the years. I don’t know, maybe you could talk about one of them, which is OpenAPS. It’s an unregulated, open source project to build an artificial pancreas to help people with type 1 diabetes. And I think it was Erich von Hippel’s work on patient driven innovation. I talk in my book about, and I ask whether we should be training people to be better patients in the era of, say, A.I. and other technologies. What do you think could be done better to equip the average patient with to demand access to patient data, ask their doctors more important questions, get answers in plain English. You know, be more collaborative. What do you think is going to move us in that direction faster or more efficiently, let’s say?

Dave deBronkart: Well, I want to be careful about the word better, because I’m very clear that my preferences are not everyone’s preferences. Really, you know, autonomy means every person gets to define their own priorities. And another thing is one of the big pushbacks from the hospital industry over the last 10 years as medical records, computers were shoved down their throats along with the mandate that they have to let patients see their data in the patient portal was a complaint that most patients aren’t interested. Well, indeed, you know, I’ve got sorry news for you. You know, when I worked in the graphic arts industry, I worked in marketing, people don’t change behavior or start doing something new until they’ve got a problem. If it’s fun or sexy, you know, then they’ll change, they’ll start doing something new. What we need to do is make it available to people. And then when needs arise, that gets somebody’s attention and they’re like, holy crap, what’s happening to my kid? Right. If they know that they can be involved, then they can start to take action. They can learn how to take action. It’s having the infrastructure available, having the app ecosystem start to grow, and then just having plain old awareness. Who knows? Maybe someday there will be a big Hollywood movie where people where people learn about stories like that and. You know, from that I mean that I think nature will take its course.

Harry Glorikian: Well, it’s interesting because I recently interviewed a gentleman by the name of Matthew Might. He’s a computer scientist who became a surrogate patient advocate for his son, Bertrand, who had a rare and undiagnosed genetic disorder that left him without an enzyme that breaks down junk protein in the cells. But he, you know, jumped in there. He did his own research found in over-the-counter drug, Prevacid of all drugs., that could help with Bertrand’s deficiency. But, I mean, Dave, you know, Matt is a, he was a high-powered computer scientist who wasn’t afraid to jump in and bathe in that, you know. Is that the type of person we need? Is that a cautionary tale, or an inspiring tale? How do you think about that?

Dave deBronkart: Desperate people will bring whatever they have to the situation. And this is no different from, you know, there have been very ordinary people who had saved lives at a car crash because they got training about how to on how to stop bleeding as a Boy Scout. You know, it is a mental trap to say, “But you’re different.” Ok. Some people said, “Well, Dave, you’re an MIT graduate, my patients aren’t like you.” And people say, well, yeah, but Matt Might is a brilliant PhD type guy. What you mentioned few minutes before gives the lie to all of that, the OpenAPS community. All right, now, these are people you need to know appreciate the open apps world. You need to realize that a person with type 1 diabetes can die in their sleep any particular night. You know, they can even have an alarm, even if they have a digital device connected with an alarm, their blood sugar can crash so bad that they can’t even hear the alarm. And so and they got tired of waiting the industry. Year after year after year, another five years will have an artificial pancreas, another five years, and a hashtag started: #WeAreNotWaiting. Now, I am I don’t know any of the individuals involved, but I’ll bet that every single diabetes related executive involved in this thought something along the lines of, “What are they going to do, invent their own artificial pancreas?” Well, ha, ha, ha, folks. Because as I as I imagine, you know, the first thing that happened was this great woman, Dana Lewis, had a digital insulin pump and a CGM, continuous glucose meter, and her boyfriend, who’s now her husband, watched her doing the calculation she had to do before eating a hamburger or whatever and said, “I bet I could write a program that would do that.”

Dave deBronkart: And so they did. And one thing led to another. His program, and she had some great slides about this, over the course of a year, got really good at predicting what her blood sugar was going to be an hour later. Right. And then they said, “Hmm, well, that’s interesting. So why don’t I put that in a little pocket computer, a little $35 pocket computer?” The point is, they eventually got to where they said, let’s try connecting these devices. All right. And to make a long story short, they now have a system, as you said, not a product, they talked to the FDA, but it’s not regulated because it’s not a product. Right. But they’re not saying the hell with the FDA. They’re keeping them informed. What are the scientific credentials of Dana Lewis and her boyfriend, Scott? Dana is a PR professional, zero medical computer or scientific skills? Zero. The whole thing was her idea. Various other people got involved and contributed to the code. It is a trap to think that because the pioneering people had special traits, it’s all bogus. Those people are lacking the vision to see what the future you is going to be. See, and the beautiful thing from a disruptive standpoint is that when the person who has the problem gains access to power to create tools, they can take it in whatever direction they want. That’s one of the things that happened when typesetting was killed by desktop publishing.

Harry Glorikian: Right.

Dave deBronkart: In typesetting, they said “You people don’t know what you’re doing!” And the people said, whatever, dude, they invented Comic Sans, and they went off and did whatever they wanted and the world became more customer centered for them.

Harry Glorikian: So. You know, this show is generally about, you know, data, Machine learning and trying to see where that’s going to move the needle. I mean, do you see the artificial intelligence umbrella and everything that’s under that playing a role to help patients do their own research and design their own treatments?

Dave deBronkart: Maybe someday, maybe someday. But I’ve read enough — I’m no expert on AI, but I’ve read enough to know that it’s a field that is full of perils of just bad training data sets and also full of immense amounts of risk of the data being misused or misinterpreted. If you haven’t yet encountered Cathy O’Neil, she’s the author of this phenomenal book, Weapons of Math Destruction. And she said it’s not just sloppy brain work. There is sloppy brain work in the mishandling of data in A.I., but there is malicious or ignorant, dangerously ignorant business conduct. For instance, when companies look at somebody who has a bad credit rating and therefore don’t give them a chance to do this or this or this or this, and so and they actually cause harm, which is the opposite of what you would think intelligence would be used for.

Harry Glorikian: So but then, on the opposite side, because I talk about some of these different applications and tools in in the book where, you know, something like Cardiogram is able to utilize analytics to identify, like it alerted me and said “You know, you might have sleep apnea.” Right. And it can also detect an arrhythmia, just like the Apple Watch does, or what’s the other one? Oh, it can also sort of alert you to potentially being prediabetic. Right. And so you are seeing, I am seeing discrete use cases where you’re seeing a movement forward in the field based on the analytics that can be done on that set of data. So I think I don’t want to paint the whole industry as bad, but I think it’s in an evolutionary state.

Dave deBronkart: Absolutely. Yes. We are at the dawn of this era, there’s no question. We don’t yet have much. We’re just going to have to discover what pans out. Really, I. Were you referring to the Cardia, the Acor, the iPhone EKG device a moment ago?

Harry Glorikian: No, there’s there’s actually an, I’ve got one here, which is the you know…

Dave deBronkart: That’s it. That’s the mobile version. Exactly. Yeah. Now, I have a friend, a physician friend at Beth Israel Deaconess, who was I just rigidly absolutely firmly trust this guy’s brain intelligence and not being pigheaded, he was at first very skeptical that anything attached to an iPhone could be clinically useful. But he’s an E.R. doc and he now himself will use that in the E.R. Put the patient’s fingers on those electrodes and and send it upstairs because the information, when they’re admitting somebody in a crisis, the information gets up there quicker than if he puts it in the EMR.

Harry Glorikian: Well, you know, I always try to tell people like these devices, you know, they always say it’s not good enough, it’s not good enough. And I’m like, it’s not good enough today. But it’s getting better tomorrow and the next day. And then they’re going to improve the sensor. And, yep, you know, the speed of these changes is happening. It’s not a 10 year shift. It’s it’s happening in days, weeks, months, maybe years. But, you know, this is a medical device on my arm as far as I’m concerned.

Harry Glorikian: It’s a device that does medical-related things. It certainly doesn’t meet the FDA’s definition of a medical device that requires certification and so on. Now, for all I know, maybe two thirds of the FDA’s criteria are bogus. And we know that companies and lobbyists have gamed the system. It’s an important book that I read maybe five years ago when it was new, was An American Sickness about the horrifying impacts of the money aspect of health care. And she talked about, when she was talking specifically about device certification, she talked about how some company superbly, and I don’t know if they laughed over their three martini lunch or what, some company superbly got something approved by the FDA as saying, we don’t need to test this because it’s the same as something else.

Harry Glorikian: Ok, equivalence.

Dave deBronkart: And also got a patent on the same thing for being completely new. Right. Which is not possible. And yet they managed to win the argument in both cases. So but the this is not a medical device, but it is, gives me useful information. Maybe we should call it a health device.

Harry Glorikian: Right. Yeah, I mean, there are certain applications that are, you know, cleared by the FDA right now, but, you know, I believe what it’s done is it’s allowing these companies to gather data and understand where how good the systems are and then apply for specific clearances based on when the system gets good enough, if that makes sense.

Dave deBronkart: Yes. Now, one thing I do want to say, there’s an important thing going on in the business world, those platforms. You know, companies like Airbnb, Uber, whatever, where they are, a big part of their business, the way they create value is to understand you better by looking at your behavior and not throwing so much irrelevant crap at you. Now, we all know this as it shows up. As you know, you buy something on Amazon and you immediately get flooded by ads on Facebook for the thing that you already bought, for heaven’s sake. I mean, how stupid is that? But anyway, I think it’s toxic and should be prohibited by law for people to collect health data from your apps and then monetize it. I think that should be completely unacceptable. My current day job is for this company called Pocket Health, where they collect a patient’s radiology images for the patient so the patient can have 24/7 access in the cloud. And when I joined there, a friend said, oh, I gather they must make their money by selling the data. Right? And I asked one of the two founding brothers, and he was appalled. That’s just not what they do. They have another part of the company. And anybody who gets any medical device, any device to track their health should make certain that the company agrees not to sell it.

[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 is now available for pre-order. Just go to Amazon and search for The Future You, Harry Glorikian.

Thanks. And now back to our show.

[musical interlude]

Harry Glorikian: You mentioned FHIR or, you know, if I had to spell it out for people, it’s Fast Healthcare Interoperability Resource standard from, I think, it’s the Health Level 7 organization. What is FHIR? Where did it come from and what does it really enable?

Dave deBronkart: So I’ll give you my impression, which I think is pretty good, but it may not be the textbook definition. So FHIR is a software standard, very analogous to HTTP and HTML for moving data around the same way those things move data around on the Web. And this is immensely, profoundly different from the clunky, even if possible, old way of moving data between, say, an Epic system, a Cerner system, a Meditech system nd so on. And the it’s a standard that was designed and started five or six years ago by an Australian guy named Graham Grieve. A wonderful man. And as he developed it, he offered it to HL7, which is a very big international standards organization, as long as they would make it free forever to everyone. And the important thing about it is that, as required now by the final rule that we were discussing, every medical record system installed at a hospital that wants to get government money for doing health care for Medicare or Medicaid, has to have what’s called a FHIR endpoint. And a FHIR endpoint is basically just a plug on it where you can, or an Internet address, the same way you can go to Adobe.com and get whatever Adobe sends you, you can go to the FHIR endpoint with your login credentials and say, give me this patient’s health data. That’s it. It works. It already works. That’s what I use in that My Patient Link app that I mentioned earlier.

Harry Glorikian: So just to make it clear to someone that say that’s listening, what does the average health care consumer need to know about it, if anything, other than it’s accessible? And what’s the part that makes you most excited about it?

Harry Glorikian: Well, well, well. What people need to know about it is it’s a new way. Just like when your hospital got a website, it’s a new way for apps to get your data out of the hospital. So when you want it, you know that it has to be available that way. Ironically, my hospital doesn’t have a FHIR endpoint yet. Beth Israel Deaconess. But they’re required to by the end of the year. What makes me excited about it is that… So really, the universal principle for everything we’ve discussed is that knowledge is power. More precisely, knowledge enables power. You can give me a ton of knowledge and I might not know what to do with it, but without the knowledge, I’m disempowered. There’s no dispute about that. So it will become possible now for software developers to create useful tools for you and your family that would not have been possible 15 years ago or five years ago without FHIR. In fact, it’s ironic because one of the earliest speeches I gave in Washington, I said to innovators, data is fuel. Right. We talked about Quicken and Mint. Quicken would have no value to anybody if they couldn’t get at your bank information. Right. And that’s that would have prevented. So we’re going to see new tools get developed that will be possible because of FHIR and the fact that the federal regulations require it.

Harry Glorikian: Yeah, my first one of my first bosses actually, like the most brilliant boss, I remember him telling me one at one time, he goes, “Remember something: Knowledge is power.” I must have been 19 when he told me that. And I was, you know, it took me a little while to get up to speed on what he meant by that. But so do you believe FHIR is a better foundation for accessing health records than previous attempts like Google Health or Microsoft Health Vault?

Dave deBronkart: Well, those are apples and oranges. FHIR is a way of moving the data around. Several years into my “Give me my damn data” campaign, I did a blog post that was titled I Want a Health Data Spigot. I want to be able to connect the garden hose to one place and get all my data flowing. Well, that’s what FHIR is now. What’s at the other end of the hose? You know, different buckets, drinking glasses, whatever. That’s more analogous to Google Health and Health Vault. Google Health and Health Vault might have grown into something useful if they could get all the important information out there, which it turns out was not feasible back then anyway. But that’s what’s going to happen.

Harry Glorikian: What is the evolution you’d like to see in the relationship between the patient and the U.S. health care systems? You know, you once said the key to be would get the money managers out of the room. You know, if you had to sort of think about what you’d want it to evolve to, what would it be?

Dave deBronkart: Well, so. There are at least two different issues involved in this. First of all, in terms of the practice of medicine, the paradigm of patient that I mentioned, collaboration, you know, collaboration, including training doctors and nurses on the feasibility and methods of collaboration. How do you do this differently? That won’t happen fast because the you know, the I mean, the curriculum in medical schools doesn’t change fast. But we do have mid career education and we have people learning practical things. So there’s a whole separate issue of the financial structure of the U.S. health system, which is the only one I know in the world that is composed of thousands of individual financially separate organizations, each of which has managers who are required by law to protect their own finances. And the missing ingredient is that as all these organizations manage their own finances, nobody anywhere is accountable for whether care is achieved. Nobody can be fired or fined or put out of business for failing to get the patient taken care of as somebody should have. And so those are those are two separate problems. My ideal world is, remember a third of the US health care spending is excess and somebody a couple of years ago…Guess what? A third of the US health care spending is the insurance companies. Now, maybe the insurance companies are all of the waste. I don’t know. I’m not that well-informed. But my point is there is plenty of money there already being spent that would support doctors and nurses spending more time with you and me beyond the 12 or 15 minutes that they get paid for.

Harry Glorikian: So it’s interesting, right? I mean, the thing that I’ve sort of my bully pulpit for, for a long time has been, once you digitize everything, it doesn’t mean you have to do everything the same way. Which opens up, care may not have to be given in the same place. The business model may now be completely open to shift, as we’ve seen with the digitization of just about every other business. And so I you know, I worry that the EMRs are holding back innovation and we’re seeing a lot of innovation happen outside of the existing rubric, right, the existing ivory towers, when you’re seeing drug development using A.I. and machine learning, where we’re seeing imaging or pathology scans. I mean, all of those are happening by companies that are accessing this digitized data and then providing it in a different format. But it’s not necessarily happening inside those big buildings that are almost held captive by the EMR. Because if you can’t access the data, it’s really hard to take it to that next level of analytics that you’d like to take it to.

Dave deBronkart: Yes, absolutely.

Harry Glorikian: I mean, just throwing that out there, I know we’ve been talking about the system in particular, but I feel that there’s the edges of the system aren’t as rigid as they used to be. And I think we have a whole ecosystem that’s being created outside of it.

Harry Glorikian: Absolutely. And the when information can flow you get an increasing number of parties who can potentially do something useful with it, create value with it. And I’m not just talking about financial value, but achieve a cure or something like that. You know, interestingly, when the industry noticed what the open apps people were doing, all of a sudden you could no longer buy a CGM that had the ability to export the data.

Harry Glorikian: Right.

Dave deBronkart: Hmm. So somebody is not so happy about that. When an increasing number of people can get out data and combine it with their other ideas and skills and try things, then the net number of new innovations will come along. Dana Lewis has a really important slide that she uses in some presentations, and it ties in exactly with Erich von Hippel’s user driven innovation, which of course, shows up in health care as patient driven innovation. The traditional industrial model that von Hippel talks about is if you’re going to make a car, if you’re going to be a company going into the car business, you start by designing the chassis and doing the wheels and designing the engine and so on and so on. And you do all that investment and you eventually get to where you’ve got a car. All right. Meanwhile, Dana shows a kid on a skateboard who can get somewhere on the skateboard and then somebody comes up with the idea of putting a handle on it. And now you’ve scooter. Right. And so on. The user driven innovations at every moment are producing value for the person who has the need.

Harry Glorikian: Right. And that’s why I believe that, you know, now that we’ve gotten to sort of that next level of of datafication of health care, that these centers have gotten cheaper, easier, more accessible. You know, like I said, I’ve got a CGM on my arm. Data becomes much more accessible. FHIR has made it easier to gain access to my health record. And I can share it with an app that might make that data more interpretable to me. This is what I believe is really sort of moving the needle in health care, are people like Matthew Might doing his own work where it’s it’s changing that. And that’s truly what I try to cover in the book, is how these data [that] are now being made accessible to patients gives them the opportunity to manage their own health in a better way or more accurately and get ahead of the warning light going on before the car breaks down. But one of the things I will say is, you know, I love my doctor, but, you know, having my doctor as a partner in this is makes it even even better than rather than just me trying to do anything on my own.

Dave deBronkart: Of course, of course. Dr. Sands is fond of saying “I have the medical training or diagnosis and treatment and everything, but Dave’s the one who’s the expert on what’s happening in his life.” Right. And and I’m the expert on my own priorities.

Harry Glorikian: Right. Which I can’t expect. I mean, my doctor has enough people to worry about, let alone like, me being his sole, the only thing he needs to think about. So, Dave, this was great. It was great having you on the show. I hope this is one of many conversations that we can have going forward, because I’m sure there’s going to be different topics that we could cover. So I appreciate you taking the time and being on the show.

Dave deBronkart: Well, and same to you. The this has been a very stimulating I mean, and the you’ve got the vision of the arriving future that is informed by where we’re coming from, but not constrained by the old way of thinking. And that really matters. The reality, the emerging reality, whether anybody knows it or not, is that people with a big problem are able to act now in ways that they weren’t before. I mean, another amazing example is a guy in England named Tal Golesworthy has Marfan syndrome. And one problem that people with Marfan syndrome face is aortic dissection. The walls of the aorta split open and it can be pretty quickly fatal. And he describes himself in his TED talk as a boiler engineer. And he says when we have a weak pipe, we wrap it. So he came up with the idea of exporting his CAT scan data or the MRI data of his beating heart and custom printing a fabric mesh to wrap around his aorta. And it’s become and medically accepted treatment now.

Harry Glorikian: That’s awesome, right.

Dave deBronkart: This is the data in the hands of somebody with no medical training, just. But see, that’s the point. That’s the point. He enabled by the data, is able to create real value, and it’s now an accepted treatment that’s called PEARS and it’s been done hundreds of times. And, you know, here’s a beautiful, it’s sort of like the Dana Lewis skateboard scooter progression, years later, a subsequent scan discovered something unexpected. The mesh fabric has migrated into the wall of his aorta. So he hadn’t he now has a know what doctor, what hospital, what medical device company would have ever dreamed of trying to create that? That’s the beauty of liberation when data gets into the hands of the innovators.

Harry Glorikian: Well, that’s something that everybody can take away from today is at least thinking about their data, how it can help them manage their health better or their life better. Obviously, I always say, in cahoots with your doctor, because they have very specific knowledge, but having the data and managing yourself is better than not having the data and not understanding how to manage yourself. So on that note, Dave, thank you so much for the time today. It was great.

Dave deBronkart: Thank you very much. See you next time.

Harry Glorikian:That’s it for this week’s episode.

You can find past episodes of The Harry Glorikian Show and MoneyBall Medicine at my website, glorikian.com, under the tab Podcasts.

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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[…] Today’s episode is part 2 of our talk. (You can also review part 1 if you want. It’s deeper foundation for part 2; most of part 1 will be familiar to my readers.) […]

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