Podcast appearances and mentions of dave debronkart

In this episode, Dave deBronkart and Christina Farr, champions of patient-centered digital health, join Lee to talk about how AI is reshaping healthcare in terms of patient empowerment and emerging digital health business models. DeBronkart, a cancer survivor and longtime advocate for patient empowerment, discusses how AI tools like ChatGPT can help patients better understand their conditions, navigate the healthcare system, and communicate more effectively with clinicians. Farr, a healthcare investor and former journalist, talks about the evolving digital health–startup ecosystem, highlighting where AI is having the most meaningful impact—particularly in women's health, pediatrics, and elder care. She also explores consumer trends, like the rise of cash-pay healthcare.

Data scientist Emily Hadley on navigating AI in healthcare, offering practical advice for maintaining patient agency amid algorithmic decision-making. Summary This interview with data scientist Emily Hadley examines the intersection of artificial intelligence and healthcare through a deeply personal lens. Hadley's journey began when her own health diagnosis coincided with her graduate studies in analytics, revealing how algorithm-driven systems often affect patient care—especially through insurance claim denials and clinical documentation. The conversation offers practical guidance for patients navigating AI-influenced healthcare, including reviewing AI-generated clinical notes for accuracy, challenging algorithmic insurance decisions, and insisting on human intervention when automated systems fail. Hadley advocates for preserving patient agency and rights within increasingly automated systems while highlighting how algorithm review boards are striving to provide governance in this largely unregulated space. The interview concludes with resources for staying informed about developments in healthcare AI, emphasizing that while AI tools are rapidly advancing, patient advocacy remains vital. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Table of Contents Toggle EpisodeProemA Data Scientist AwakesBuilding Guardrails with AI GovernanceHallucinations and Validation with AI in ResearchPrompt Engineering-Conversational AIVerification and VigilanceStaying InformedReflectionRelated episodes from Health Hats Please comment and ask questions: at the comment section at the bottom of the show notes on LinkedIn  via email YouTube channel  DM on Instagram, TikTok to @healthhats Production Team You know who you are. I'm grateful. Podcast episode on YouTube No video Inspired by and Grateful to Eric Pinaud, Laura Marcia, Amy Price, Dave deBronkart, Links and references Prompt Engineering Algorithm Review Boards at RTI Dave deBronkart's Patient's Use AI Episode Proem This year, I switched from Medicare Advantage to Traditional Medicare. I still needed to purchase a supplemental commercial plan to cover what Medicare Part B didn't. However, the supplemental commercial plan denied some services the previous Medicare Advantage plan covered. Why? What algorithms did each plan use to determine coverage? How can I manage this? Welcome to the third installment of Artificial Intelligence Can Work for You. We've explored how I use AI in my podcast productions and delved into some AI basics with Info-Tech leader Eric Pinaud. I asked Emily Hadley, a data scientist at RTI specializing in AI algorithms for insurance coverage decisions, to join us. Early in her graduate studies, Emily was diagnosed with Crohn's disease. This led to her interest in studying insurance algorithms. A Data Scientist Awakes Health Hats: How did you gain expertise in AI? Emily Hadley: Great question. I was diagnosed right as I started a graduate program in analytics. In my undergraduate studies, I studied statistics in public policy. I liked the idea of using data to shape how policymakers make decisions, especially in the US. I had done some work with AmeriCorps and then went to grad school to really hone those skills. Being diagnosed at the same time that I was in grad school meant that I was navigating to new, informative, and educational areas. And I think that that's when I really came to realize the power of data and the power of AI in shaping the way that organizations and people make decisions. We live in a really algorithm-fueled society. We constantly encounter technology and AI systems, even when we don't realize it. An example I give is that I've faced many problems getting insurance to cover the things it is supposed to. I didn't realize until a couple of years ago that this is ...

In this episode of the Plutopia News Network Podcast, we discuss how AI is revolutionizing healthcare by empowering patients to take control of their medical decisions. Our guests, Dave DeBronkart…

  Demystify AI's evolution, from Netflix recommendations to ChatGPT, exploring how neural networks learn & why even AI creators can't fully explain how it works. Summary Claude AI used in this summary

What kind of Artificial Intelligence does Health Hats, the Podcast, use in production? Understanding types of AI, transparency, and ethical considerations. Summary Perplexity used in this summary AI Tools in Use Various AI-powered software and apps are utilized in production, including Zoom, Descript, Grammarly, DaVinci Resolve, Canva, Perplexity, and OpenArt AI. Types of AI The episode breaks down different categories of AI, including Narrow AI, Artificial General Intelligence (AGI), and Artificial Superintelligence (ASI). AI functionalities are explained, from Reactive Machine AI to the theoretical Self-Aware AI. Ethical Considerations Transparency and disclosure of AI usage in content creation Maintaining authenticity and human creativity Ensuring content accuracy and preventing misinformation Addressing bias and fairness in AI algorithms Protecting user privacy and data Ensuring Transparency Disclosing AI usage in audio content and metadata Clear communication with the audience about AI utilization Appropriate use of AI as a tool to enhance, not replace, human creativity Verifying and fact-checking AI-generated content The episode emphasizes the importance of using AI responsibly to enhance the podcasting experience while maintaining integrity, authenticity, and trust with the audience. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Table of Contents Toggle EpisodeProemAI used in Health Hats ProductionAI in Podcast Production According to Health HatsAI in Content Creation and EditingAudio ProcessingVideo EditingAI for Content EnhancementTranscription and SubtitlingContent GenerationAI for Audience Engagement and AnalyticsPersonalizationAnalytics and InsightsTypes of AI Based on CapabilitiesNarrow AI (Weak AI)Artificial General Intelligence (AGI)Artificial Superintelligence (ASI)Types of AI Based on FunctionalityReactive Machine AILimited Memory AITheory of Mind AISelf-Aware AIAI Ethical ConsiderationsTransparency and DisclosureMaintaining AuthenticityContent Accuracy and MisinformationBias and FairnessPrivacy and Data ProtectionJob Displacement ConcernsClimate and Resource ImpactTransparencyDisclosure RequirementsClear CommunicationAppropriate AI UsageContent VerificationOngoing EvaluationTransparency: AI Notice in Health Hats, the Podcast Show NotesAI Notice for Health Hats, the PodcastReflectionRelated episodes from Health Hats Please comment and ask questions: at the comment section at the bottom of the show notes on LinkedIn  via email YouTube channel  DM on Instagram, Twitter, TikTok to @healthhats Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk  Leon van Leeuwen: article-grade transcript editing  Oscar van Leeuwen: video editing Julia Higgins: Digital marketing therapy Steve Heatherington: Help Desk and podcast production counseling Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips. Podcast episodes on YouTube from Podcast. Inspired by and Grateful to  Amy Price, Fred Trotter, Dave deBronkart, Eric Pinaud, Emily Hadley, Laura Marcial, James Cummings, Ken Goodman Links and references https://conversational-leadership.net/quotation/ai-is-neither-artificial-not-intelligent/ AI in Podcasting: Transforming Podcast with AI Technology Best AI tools for podcasts AI in Podcasting: A Guide for Brand Marketers https://www.carmatec.com/blog/ai-in-media-and-entertainment-complete-guide/ AI in Media and Entertainment Complete Guide Episode Proem No surprise, I use Artificial Intelligence in my podcast production. As an early adopter of technology,

Our special guest of Pulse is known online as e-Patient Dave. Dave Debronkart is a leading light of determined patient advocacy for individual access to their own health information. Dave joins us in the PulsePod studio to explore a new movement he is championing - #PatientsUseAIOpenAI's Transformation and AI TransparencyOpenAI's shift from a non-profit to a for-profit corporation raises concerns about AI transparency, accountability, and the concentration of power in tech. How does this impact healthcare?ChatGPT Use in HealthcareA recent UK study reveals that 20% of surveyed GPs use generative AI tools in clinical practice, highlighting the need for education on both benefits and risks.Patient Data Sharing ControversyAustralia's largest medical imaging lab, i-Med, faces scrutiny for sharing patient scans with AI startup Harrison AI. Is this all a bit overblown?AI Consultation in AustraliaThe Department of Health and Aged Care is running a public consultation on Safe and Responsible AI, with healthcare as a priority area for reform. Listeners are encouraged to participate in the consultation and attend the upcoming webinar hosted by the Australian Alliance for Artificial Intelligence in Healthcare (AAAiH).Epic vs Particle: Interoperability & Patient Access to RecordsA lawsuit between EMR provider Epic and data integration company Particle Health highlights the ongoing debate about patient access to health information and interoperability. The outcome of this case could significantly impact the future of health data sharing and the balance between data protection and patient empowerment.Real World Testing of AI-enabled General PracticeHunter, New England and Central Coast Primary Health Network has launched a new project to test and trial AI tools in 10 of its practices and act as a showcase for these tools.Resources: Follow ePatientDave on LinkedIn | X | SubstackGovt AI consultation: Submissions link & Webinar linkVisit Pulse+IT.news to learn more, engage in this rapidly growing sector, and subscribe to breaking digital news, weekly newsletters and a rich treasure trove of archival material. People in the know, get their news from Pulse+IT – Your leading voice in digital health news.Follow us on LinkedIn Louise | George | Pulse+ITFollow us on X Louise | George | Pulse+ITSend us your questions pulsepod@pulseit.newsProduction by Octopod Productions | Ivan Juric

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Dave deBronkart and Doc Searls take aim at the American healthcare system. They discuss empowered patients, medical technology, electronic medical records, and much more. Dave, known on the internet as…

How can medical document errors become easy to fix, everywhere the error lives, & fit in the workflow? Virginia Lorenzi and HL7's Patient Empowerment Workgroup. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Introducing Virginia Lorenzi 03:31. 2 HL7's Patient Empowerment Workgroup 04:56. 2 An intelligent customer understands some of the technical 05:45. 2 Requests for corrections – a sign of engagement 07:12. 3 Fixing errors - from the fifties 08:01. 3 Patient satisfaction and errors 09:30. 4 Release more information, find more errors, feel worse 10:07. 4 Burden on clinicians, burden on patients 11:42. 4 What if you could push a button and start and track the correction process 12:12. 4 Connectathons – a meeting of the minds in a sandbox 13:17. 5 Making decisions about data standards 15:32. 5 Eureka, we have standards. Now, who's going to use them? How easy can we make it? 18:41. 6 An error is not an error, is not an error 21:11. 7 Ink on paper 24:07. 7 HIPAA-federal rules about requirements to correct errors 26:38. 8 Misdiagnosis – Out damn spot! 28:54. 9 Impact of errors 32:07. 10 Motivation to fix errors 33:50. 10 Reflection 38:44  12 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn  via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Cohelo as originally played by Mandrill, here played by Lechuga Fresca Latin Band, Danny van Leeuwen soloing on Baritone Sax Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute®  (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Liz Salmi, Tom Delbanco, Peter Elias, Grace Cordovana, Dave DeBronkart, Debi Willis, Laura Marcial, Bryn Rhodes Links How accurate is the medical record? A comparison of the physician's note with a concealed audio recording in unannounced standardized patient encounters in the Journal of Informatics in Health and Biomedicine the Patient Empowerment Workgroup HIPAA, you have a right to get your record fixed HIPAA rule says that if a record is amended or if a record amendment the 21st Century Cures Act. the Patient Requests for Corrections FHIR Implementation Guide United States Core Data Set for Interoperability. How to Correct Errors in Your Medical Records Correcting Errors In the Electronic Medical Record Impact of Electronic Health Record Systems on Information Integrity: Quality and Safety Implications IHE Connectathon: A Unique Testing Opportunity Late addition: Beat cancer? Your Medicare Advantage plan might still be billing for it. Related podcasts https://health-hats.com/pod158/ https://health-hats.com/opennotes-a-gold-mine-of-community-organizing/ https://health-hats.com/misdiagnosis-how-can-patients-help-doctors/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very...

Since the early 2000s, Dr. Danny Sands and his patient, Dave deBronkart have been working collaboratively on Dave's care - breaking boundaries of the old standard of care and communication between doctor and patient.  Together they co-founded the Society for Participatory Medicine. Dr. Sands is an Assistant Professor of Medicine at The Harvard Medical School, and practices primary care at Beth Israel Deaconess Medical Center.  Decades ago, he started emailing with his patients, and has since innovated many tools to help his patients get the best care - firm in his belief that working together benefits both patient and provider.  Dave deBronkart, also known as “e-patient Dave,” is an advocate for participatory medicine, and cancer survivor. Years before his own kidney cancer diagnosis, he wanted to be an engaged and informed participant in his medical care. He sought out a similar-minded doctor and that's how he met like-minded ally, Dr. Danny Sands. Check out their interview to hear their story, learn about Dave's cancer journey, and how together he and Dr. Sands created the Society for Participatory Medicine.  Connect with Dr. Sands: https://www.linkedin.com/in/drdannysands/  Connect with Dave deBronkart: https://www.linkedin.com/in/epatientdave/  Learn more about the Society for Participatory Medicine: https://participatorymedicine.org/manifesto/  See Dr. Danny and Dave Sing - around the 55 minute mark https://www.epatientdave.com/2019/06/19/nehimss-2019-teaching-patient-clinician-partnership-with-role-play-and-a-song/  Topical time codes: 1:01 - About Dave and Dr. Sands  6:15 - Working with Dr. Sands collaboratively 11:32 - Connecting with patients 16:00 - Dave's kidney cancer diagnosis and online support 22:58 - Society for Participatory Medicine  27:07 - Culture change in healthcare  37:36 - Society for Participatory Medicine Manifesto

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.Please rate and review The Harry Glorikian Show on Apple Podcasts! Here's how to do that from an iPhone, iPad, or iPod touch:1. Open the Podcasts app on your iPhone, iPad, or Mac. 2. Navigate to The Harry Glorikian Show podcast. You can find it by searching for it or selecting it from your library. Just note that you'll have to go to the series page which shows all the episodes, not just the page for a single episode.3. Scroll down to find the subhead titled "Ratings & Reviews."4. Under one of the highlighted reviews, select "Write a Review."5. Next, select a star rating at the top — you have the option of choosing between one and five stars. 6. Using the text box at the top, write a title for your review. Then, in the lower text box, write your review. Your review can be up to 300 words long.7. Once you've finished, select "Send" or "Save" in the top-right corner. 8. If you've never left a podcast review before, enter a nickname. Your nickname will be displayed next to any reviews you leave from here on out. 9. After selecting a nickname, tap OK. Your review may not be immediately visible.That's it! Thanks so much.Full TranscriptHarry 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 You: How 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.

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 Time, U.S. News, USA Today, Wired, MIT 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.Please rate and review The Harry Glorikian Show on Apple Podcasts! Here's how to do that from an iPhone, iPad, or iPod touch:1. Open the Podcasts app on your iPhone, iPad, or Mac. 2. Navigate to The Harry Glorikian Show podcast. You can find it by searching for it or selecting it from your library. Just note that you'll have to go to the series page which shows all the episodes, not just the page for a single episode.3. Scroll down to find the subhead titled "Ratings & Reviews."4. Under one of the highlighted reviews, select "Write a Review."5. Next, select a star rating at the top — you have the option of choosing between one and five stars. 6. Using the text box at the top, write a title for your review. Then, in the lower text box, write your review. Your review can be up to 300 words long.7. Once you've finished, select "Send" or "Save" in the top-right corner. 8. If you've never left a podcast review before, enter a nickname. Your nickname will be displayed next to any reviews you leave from here on out. 9. After selecting a nickname, tap OK. Your review may not be immediately visible.That's it! Thanks so much.Full TranscriptHarry 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 You: How 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. RI 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 You: How 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. 

Are you a patient-caregiver activist winding down? Let's chat and hand off to younger people feeling their way & support them as they perceive their needs. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Winding down. 1 The Health Hats of Tomorrow 02:31. 1 Legacy 03:23. 1 Succession planning 04:42. 2 The movement cycle 06:46. 2 Collaborate? 07:54. 2 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Photo by Brett Jordan on Unsplash Web/social media coach, Kayla Nelson Mambo Inn composed by Mario Bauza and played by Lechuga Fresca Latin Band Inspired by and grateful to Bill Adams, Freddie White Johnson, Beverly Rogers, Jan Oldenburg, Neely Williams, Thomas Scheid, Pancho Chang, Matt Cheung, Janice McCallum, Casey Quinlan, Dave DeBronkart, Regina Greer-Smith, Sharon Levine, Philip Posner, Janice Tufte, Jane Sarasohn-Kahn, Susan Woods, Michael Millenson, Peter Elias, Cynthia Meyer Sponsored by Abridge Support Health Hats, the Podcast financially Links Related podcasts and blogs https://health-hats.com/retirement-micro-stepping-with-mini-goals/ https://health-hats.com/share-the-stories-help-the-helpers/ https://health-hats.com/caring-for-parents-its-their-life-open-the-door/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Winding down As a direct care nurse, I sought to put myself out of business one patient at a time. As a boss, I had succession planning as top of mind, ensuring the team continued to operate without me if I got fired, laid off, or run over by a bus. Now I'm winding down. I'm past my prime.  I'm seasoned. I'll be 70 this year. What legacy do I leave? Who's coming up in the patient-caregiver activist world. How can I support the next generations of activists? Legacy includes spirit, inspiration, a written and oral body of work, plus policy and practice change hardwired into teams, organizations, and communities. Succession planning includes mentoring, coaching, mastermind groups, and opening more paid seats at the table. Goodness, stated like that, it feels like more work rather than winding down. The Latin band Lechuga Fresca plays Mambo Inn, the music behind the podcast. In addition, thanks to Joey van Leeuwen who creates the amazing music for my podcast, heard here in the intro and outro and our sponsor's message,

We are thrilled to have e-Patient Dave deBronkart, Chief Patient Officer at PocketHealth & Patient Empowerment Keynote Speaker, as this week's guest. Dave is an Insightful, analytical communicator, mapping what customers need onto what technology can do. His advocacy for the new world of patient engagement and health data rights is making a difference for patients around the world. 

Audio version Virtual Coffee with Dave de Bronkhart aka ePatientDave

ePatient Dave - Part I I'm honored to have Dave deBronkart on the podcast today. He is the original "e-Patient" and has a lot of stories and interesting projects to share with us today. As a matter of fact, so many interesting projects that we're going to break this into a two-part discussion, so join me for our conversation with e-Patient Dave on Get Social Health. Podcast Transcript Announcer:                      00:22                   Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health, brings you conversations with professionals actively working in the field and provides real-life examples of healthcare social media in action. Here is your host, Janet Kennedy. Janet:                                00:48                   Welcome to the Get Social Health podcast. What an honor for me to have Dave deBronkart on the show today. He and I met through the Mayo Clinic Social Media Network and have run into each other a few times at healthcare conferences. It is such an honor to have him here. He's known on the Internet as ePatient Dave. He's the author of the highly rated "Let patients help patients" engagement handbook and he's one of the world's leading advocates for patient engagement. After beating stage four kidney cancer in 2007 he became a blogger, health policy advisor and international keynote speaker. Dave, welcome to the podcast. Dave:                                 01:25                   It's an honor to be here. That's what healthcare needs, so I'm really glad I'm quite, you do a good professional job of it. Janet:                                01:33                   Thank you so much Dave, and I'm really thrilled to have you here. If anything, to give you an hour to sit down in a chair and just have a conversation because when I looked at your website and all your speaking engagements coming up, I was absolutely blown away with how active you are. You are talking to a lot of people these days. Dave:                                 01:52                   Well, do you know I can't sit home and be an evangelist. You've got to carry it out into the field. And as it happens, through one of the strange quirks of the universe, when I accidentally found myself, it was actually 10 years ago this month, that I found myself on the front page of the Boston Globe because of a blog post I'd written. People started asking me to give speeches on the topic and I had learned how to do that when I worked in marketing. The last thing I ever would have expected coming out of cancer is that it would turn me into an international keynote speaker. Janet:                                02:26                   I love that. I love that you felt that this is a mission worth all of your time, that you really wanted to commit to that. I know that we're going to gloss over your early story because I think a lot of people know who you are, but what you represent an almost more than any other patients we've spoken with is that you're a mature individual and you have a length of view that is longer than many of my guests. A lot of ePatients who are involved and engage these days tend to be in there like twenties and because they have always felt that social and digital was a way to tell their stories. You and I represent more of the boomer generation. Dave:                                 03:07                   Uh, we're not so forthcoming. Janet:                                03:09                   I'd love to get your perspective on this 2009 - 10 years ago when people first started you to speak as an engaged patient and an empowered patient. What's happened since 2009 to today? Dave:                                 03:23                   Well, you know, I've just been reflecting on this because 12 years I got the diagnosis to nearly died, but God cured within a year. That was 2007 in some speeches. Now I customize every speech for the audience, depending on what they're up to. Sometimes the best message is if you live long enough, things really change. And what's important about that is people tend to achieve a certain level of seniority or accomplishment in their profession, whatever it may be. And they feel like, dude, I got this, I'm good at this. And then 10 years go by and all of a sudden what was important before isn't important anymore. And you've got youngsters nipping at your heels and you got to think it all out again. So consider in the middle of my treatment, Apple introduced a product called the iPhone. You know, and you think that the world might have changed a bit since then. Dave:                                 04:20                   So, well, and that's a, you know, apps and everything. And this is why in my career in business, I was involved in quality improvement projects, countless meetings over the years with different companies about rethinking how we go about doing things, what are our customer's priorities and so on. So I naturally, when people started asking me to talk about how care, particularly patient engagement, I looked at it through that Lens. So what has changed in 10 years, 12 years and years since the front page article is, I've learned a lot more about what's changed in the industry as a whole. A lot of people have been trying to do patient engagement, patient empowerment, and a whole lot of people have been pushing back. But it turns out that a lot of big reason for that, you can't do patient empowerment and engagement with any sort of completeness unless the patient has access to the medical records. And there has been feeble lip service in the past because the technology didn't support it. But you know, the biggest change in what it looks like if you look out to the horizon is the technology is coming along and the culture is finally coming along 10 years later to make it possible for us to get all of our information. Janet:                                05:50                   And that is really the foundation of helping patients knowing and participate in their health journeys, right? They have to have access to what the doctors are saying about them and what the doctors are cataloging about them, correct? Dave:                                 06:04                   Well, in general, yes. Now, not everybody one flat. All right. Because the whole principle of patients that are care is that people are different and you can't treat everybody the same. It's, I've found it's useful to point out to people, especially if it's an audience that is in the younger parents category. Like my daughter is, I have a five-year-old granddaughter, excuse me, 5.8 years old. Dave:                                 06:32                   Her mother is a science teacher, she is 5.8 years old. Anyway, people who are recent parents, no, you can't treat all little kids the same. Some of them wanted to take things slow and easy, somewhat excitement and so on. Some patients during my illness, the nurse practitioner over men, that's just my case said that she used to work in pediatric oncology and sometimes the patient couldn't articulate what was important to them. First of all, not everybody cares about seeing what's in their health records. My parents are polar opposites on that. My father just said let them do their job. It's my mom is just on top of everything checking to make sure they've got her allergies and medications right and everything. My point is it is perverse. Take, keep people like patient in the dark about something and then go around saying they wouldn't understand. They don't know anything about this. Dave:                                 07:33                   You see my point? It's exactly, there's so many parallels between the ePatient movement than the women's movement. When I was a little kid, people were always making jokes on TV about women drivers. Well, women were not experienced drivers in the early 1950s generally, you know, the remedy was not to keep people in the dark. The remedy was to get them involved and make them experience. And that's my point with patient access to the medical record. It's really is unfair. It's an unfair burden to expect the providers to be on top of everything because there's so much stuff in a chart, it really is much better to let patients help. Janet:                                08:18                   So are you saying that, and I agree with you totally, I love your analogy too. Hey, nobody's going to get to be a better driver unless they get to drive. No one is going to appreciate their health records unless they see their health records. But are you saying that this is literally just having access to the EHR, whether you choose to engage with the electronic health record or not, is the point or is there a deeper level of information you think that patients need? Dave:                                 08:42                   That's an excellent question. I have a lot of conversations on this subject and that's a razor-sharp question. My goal is not to make people do anything a particular way. It's to help healthcare achieve its potential. I am deeply grateful to the highly skilled, trained, educated doctors, nurses, assistants, everyone who took good care of me when I was dying and in my business troubleshooting mindset. When I hear all the stories about medical errors or somebody didn't know about a side effect or just there are so many ways that the flood of information out there might not get to the point of need at the moment of need and what I want. First, we troubleshoot. We say, wow, there is too much information for anybody to know everything, so now what can we do? Some people say, well, it's the doctor's job to know everything. Dave:                                 09:50                   Well, well, I know you and I were immersed in this, but the general public has not had this OMG moment of realization yet. It's funny if the ePatient expects the doctor to know everything, it's a recipe for mischief. The same is true if the doctor expects to be treated like they know everything, you know? And that's so this is why this is a culture change, you know, in the women's movement. Well, what it taught to change mindsets and we thought we had it solved, but oh boy seems that it's an ongoing project. What it took to change mindsets was not just changing men's minds, but women's minds. Also long ago, early in my career, I had a woman who worked for me, literally said she couldn't do something. She said I'm just a girl. Like you see, you are a level three employee, which is a high level in a technical profession. Yeah. So it is a culture change. Janet:                                10:53                   All right, so what are the things you talk about as, as a goal or a priority on a professional side is that you really want social change and I think that's really the point that you were just making. But how do you envision social change helping healthcare and making healthcare easier for patients? Dave:                                 11:14                   Well, you know, just this morning, a patient blogger named Aaron Gilmer, Gilmer health law is her Twitter handle, posted something magnificent. One of the best achievements, I think in patient engagement with empowerment that I've ever seen. She has, an extreme mix of psychological and trauma and medical conditions and so on. She created two documents that are now in her chart that express what heart concerns are about being taken care of, how past traumas affect various things, what they should know, what she does in order to deal with it. And here's how I express my worry if I've been triggered. And so on. The first hospitals she gave it to, they looked at it and canceled her surgery. They basically said, get outta here. And she didn't bring it up again. She has a great blog post about it. We can link to it in the show notes. Dave:                                 12:18                   She didn't bring it up again. And then several years later, just recently she got additional care that happened to be in part of the same system. They ran across this and they said, thank you so much. And they have been using what she had expressed. They've been using those methods of talking with her and are you okay with this? And so on. See that's social change. In the old view, the doctor knows everything and those what you're supposed to get economically. This can be a major issue because in US healthcare, so much of what care providers are allowed to do is tied to reimbursement issues and there can be financial pressures. It really takes commitment as a caring profession to overcome that and in the new view, it really is important what matters to the individual patient and people are committed to care as a separate issue from the science that's being administered to the sick person. Janet:                                13:27                   Alright Dave, I'm having an epiphany here and I don't know why this never occurred to me. Although I will say I have the benefit of being a generally healthy person. I've never really had any serious health issues and a visit to the doctor will solve my problem. So I'm very, very fortunate in that regard. However, it never occurred to me that as a patient do I even have the right to add things to my own file and why we should allow patients to submit a patient statement. That kind of sets it up, especially if you're going from physician to physician, you'd have a complicated thing. Wouldn't you rather be able to say, here's my - just what Aaron Gilmer did - here's my story, here's my whatever. So that as you get from a specialist, to specialist, to specialist, they actually read just a paragraph about who you are as a person, not who you are as a series of medical diagnoses. Dave:                                 14:16                   Absolutely. And I imagine that in your work, I mean will you manage client relationships and your business? You need to understand what's important for them, right? You walk in, if you get on a first phone call with everyone and you just feel out the same thing you said to the last 12 people and here you go. Like it or not, I'm going to give you my off the shelf solution. Well, you don't like that. What's wrong with you? Right? You would think that the doctor knows what to do in every visit. But in today's world, you've got to ask yourself what, so what's the difference between what you do in service to your clients and what a physicians, MD, nurse practitioner - by the way, it was a nurse practitioner who first told Erin that he found that in her chart and he was so grateful for it. Dave:                                 15:10                   That's a whole separate discussion of how nurse practitioners generally have more of a cultural license, so to speak. Figuratively speaking, to just plain be caring professionals. What are the cultural reasons why we - in healthcare - we wouldn't start with finding out what's important. I mean, my doctor, the famous doctor Danny Sands, he was the one who in 2007 when it turns out I was dying. He, was the one who you have a good patient community and he didn't say stay off the Internet. He showed me where to go on the Internet. Janet:                                15:52                   Oh wow. He's unusual. Dave:                                 15:52                   Well that's, that's modern. That's modern today. He wears, I just saw on my last clinical visit with him, he has a button on his wife coat that says what matters to you with a question mark, what matters to you? Because you know, you prescribed somebody, okay, you got to eat better. Dave:                                 16:17                   You gotta do this, you've got to do that. That's all external shut up and do what I tell you. Unless it is grounded in me one thing, some form of a better life, to know that somebody really would love to live to see their grandchildren get married versus my bucket list has one big item. It's a month in Hawaii. You know? Then any recommendation for exercise or behavior change or anything. And that's, that's the point these days. We have so many options, treatment options and so on. All proper respect and appreciation to physicians who in today's economic environment, we'll take that extra time because they don't get paid any more for being that kind of a good physician. Janet:                                17:10                   Hmm. Okay. Dave, I want to ask your perspective on something. The world I'm in where, again, as a fortunately healthy person and in my podcast, the work I do tends to be with startups, with new companies, with digital health folks, with young people who are inventing apps and it's a very exciting world. However, I know you've spoken to physicians and healthcare practitioners in the hospital environment and one of the things that I feel is happening and I'm looking to you for clarification or validation is what's up with the medical schools? Are they focusing on integrating some of these new ideas and changes or are still training physicians the same way they always did? Therefore, we're just going to have one more generation of folks who want to say do as I say, Dave:                                 17:57                   Well, surprise, surprise. There's a spectrum. Whoever would have thought that there would be, we know social change takes generations, right? The conventional wisdom that I've heard physicians express to each other is, you don't want to be the first to do something new and you don't want to be the last, just stay in the middle of the pack. Now, surprise, surprise. That turns out to also be exactly how the curve in high tech innovation; there's to this curve where you have the early adopters, the innovators, then you have the early majority and so on, and then the laggards are the last ones to get into it. Some medical schools are primarily interested in preserving their reputation and their position. They want to do a good job of doing what's well accepted. I don't necessarily fault that. I do think it's a good way to guarantee that you will never be in leadership. Dave:                                 19:01                   You know, you may be leadership and reputation, but you'll never be leadership and turning out of the next generation of innovative, smartest, best future doctors. Others though new medical schools that come along and the best example that I know of is the Dell medical school at the University of Texas. That has just opened recently. An example of how they're willing to conspicuously differ because there is this thing that some of us learned in high school, high school biology, the Krebs cycle, how energy gets generated. And I don't remember a thing about it. And the important thing is it's always been something that doctors have to master in order to become an MB and then they never ever use it. So why is it taught and why is it so important? Some people think it's just to be obnoxious and make it difficult to get over that hump. Dave:                                 20:01                   Anyway, Dell medical school's conspicuously said, we're not teaching the Krebs Cycle. We've got better things to do with our time. And similarly there is a great social penalty within the medical community or going after something that is not well established with a larger body of published literature about it. So to get deeply into patient engagement today is risky in that context. People will say, where's the evidence for that? And that's good because once upon a time, you know, just within the last 50 years, it was discovered that doctors were doing a lot of things despite the that it doesn't work. Dave:                                 20:50                   And that's a whole separate subject. My point is it takes genuine vision and leadership to see that something is the new path forward, even if the literature doesn't exist for it. And some schools are beginning to do that, but not enough. I have begun lecturing to some medical schools. Just as one final hint of that. I opened an email late 2014 and it was an invitation from the Mayo Clinic, from their chief residents to be there visiting professor in internal medicine in 2015 despite the absence of any curriculum or anything of the sort. So I went to, we talked a lot about the future of the role of the patient. Janet:                                21:41                   Well, I love working with the team at Mayo Clinic. Now I haven't been on the clinical side, obviously I've been on the social media side, but the embracing new ideas and at least let's look at everything and what is it's potential impact is just a phenomenal philosophy that you don't turn your back on it till it's, you know, so proved, it's carved in stone. Dave, you've teamed up with probably one of the most well known medical futurists and medical device testers in the world. Dr Bertalan Mesko. What did you do with him and what is the digital health manifesto? Dave:                                 22:16                   Well, it's an ongoing thing. You know, and it's funny because this just freaks me out. One of the things that changed, I said if you live long enough, things change. Well, one thing that's happened is I am 12 years older than I was 12 years ago. And that means for instance that my daughter who was just getting out of college when I was sick is now a mid-career science teacher. And I can't believe this, but Bersi is younger than my daughter. And so there we are having these conversations and he's showing me all his digital gadgets and we actually both spoke at a conference. A company had a, an important user group meeting in Chicago a few months ago. We both spoke one after the other and he and I both are thinking in terms of what could we be achieving and what's holding it back. And we see, especially on LinkedIn, LinkedIn is a wonderful place for making connections and so on. But you'll also see in the same way that Twitter became a sort of a festering swamp of rumors and illusions. On LinkedIn, you can see investor type people, Silicon Valley type people getting frothed up about a wrong concept and just the fact that other people are getting excited about it makes it seem like this must be the right thing. So we decided together to publish this manifesto saying, Whoa, step back you guys. Just because something is an amazing new technology. I like to think of it in terms of the Pharma concept, pharmacological concept of what's the mechanism of action by which this new gadget is going to improve anything. You know, so many silicon valley inventions, as well, meaning as they were, turn out to not make any difference or they make a difference, but they don't get commercial uptake and they die. Dave:                                 24:26                   So we wanted to point out, here are the principles that you need to think about if you want to understand what's happening with digital health, because believe us, something real is happening. I used gadgets, for instance, to overcome prediabetes a few years ago, and everybody, I'm over 60 I'm well over 60 and a bunch of people said, look, people over 60 aren't going to ever change their behavior. It's a lost cause. Those people are ignorant. All right? So we said principals, it's a cultural transformation, not a technological revolution. All right? It's about behavior change. It's not about - see when I, when I got this prediabetes diagnosis, I went out and bought a Garmin wristband and I collected lots of data about my activity and my weight went up. Well. So here's the thing. Information enables behavior change, but it doesn't cause it. What produced weight loss for me and a victory was that I got into the YMCA's diabetes prevention program, which is a behavior change program. Okay? So it's not about having the technology. What's important about that from a business sense for a couple of years, cynics - so you have the enthusiasts on LinkedIn who are blabbing about how exciting this innovation is and then you always have the wave of cynics who come along and say, yeah, you know, where you go ahead and search, buy a Fitbit. You know what you find? You find ads for used ones that have been discarded on eBay. Those are stupid people who say that because somebody buys the Fitbit and they expect it to reverse their prediabetes stupid. And when I say stupid, I mean uninformed, right? It's okay for me. If somebody is uninformed and they admit it, which I do a lot. But if they are uninformed and they go around with their chest puffed out acting like they're smart, that's ignorant. Janet:                                26:36                   Well I know there's been conversations about around ADHD; that ADHD with med and no behavior modification, you're better off not taking the meds at all. So you have to understand how the medication or how the issue is impacting your body and be able to take action as well as work with the med. Dave:                                 26:57                   Well. And so now, to switch back to Erin Gilmer's perspective, because all this stuff is interrelated as everything cultural is. One of the first things I did online before the Internet was back on Compuserve. I started out being a discussion leader in desktop publishing and then I became one of the forum managers on the ADD forum back when it was called ADD. And one of the things you found there was that when the people who have the problem, and I still pitch this in speeches today for certain audiences, when the people who have the problem get the ability to express themselves and choose among options, one of the things you find is they may pursue different objectives than the therapists or being told to follow what's in the published literature, so as just one of many examples. We had one guy - and this was 1994 was when ADD was brand new - we had one guy who was a travel agent back in the days of travel agents. Did I mention that things change? And he was getting occupational therapy so he could tolerate sitting at his desk and the other patients in the community said, dude, get a job you enjoy, and he ended up becoming a UPS driver, which was a great job for our hyperactive person. Drive, drive, drive and run to the door, drive, drive, drive, run to the door at Christmas time you get bonuses for productivity. That's rethinking the issue. Anyway, my point is this really is like a seismic shift because if you shift to where you're giving the person who has the problem, permission and information and tools, what they come up with may be different than what was on offer at the hospital. That can be bad news for the hospital, but since the hospital only exists to improve health in the community, it's good for society. Janet:                                29:13                   No, that's an excellent point, Dave, and I definitely think it's one that hospitals need to hear just because you have a perspective that this, you're going to do this program, you're going to initiate this special effort or this patient initiative. It doesn't mean that the results are expected and you have to be willing to be flexible and learn from what you're doing as well as the patient learning from it. Dave:                                 29:39                   Well, and what I really hope, I don't want to sound like I'm rejecting doctors. That's the last thing. When I was sick, I did not reject doctors and go read up on herbal remedies. That might work. I went to the doctor, I still go to the doctor, but my doctor welcomes all of my doctors. Welcome me wanting to learn more and ask questions. That's the point. And now you want to know what's really ironic. So I have all these different apps. I have a wifi bathroom scale, I have my diet tracker or I'm counting fat grams, steps, and all of that stuff. My doctor can't see that data because there's big fancy hospital computer doesn't have an interface. So now we're in a world where all of a sudden I have access to a ton of data that he doesn't have. That is an inversion. Janet:                                30:40                   And so we have to figure out how to get those two things married up. Dave:                                 30:43                   Perhaps. It may be that he can do his job as well as he needs to without seeing all my data. But we were just approaching, there's a new it technology called FHIR - F H I R - which is just really maturing now after six or seven years of software development that will, for the first time, let people develop products that blend the hospital information, hospitals, plural. And my information from my devices. So there is a world coming where we can truly be partners in the same way that my tax accountant and I can both look at my Quickbooks data. Why as medicine not figured out that that's the best way. Now my tax accountant can coach me to stop doing this. See this over here? That number's too big. Why can't my doctor do that? My whole thing is helping healthcare achieve the available potential. Janet:                                31:47                   Oh, that's excellent. Announcer:                      31:49                   You've been listening to the Get Social Health podcast. The show notes are located @getsocialhealth.com to join our healthcare social media journey, follow @getsocialhealth on Twitter and start a conversation. Janet:                                32:04                   I hope you enjoyed today's podcast with Dave deBronkart. We're going to be talking about some of the projects he's working on and some exciting new things happening in his life in the next episode. So make sure you tune in for part two of our conversation with e-Patient Dave. Find Dave online: LinkedIn profile: http://LinkedIn.com/in/ePatientDave Twitter: @ePatientDave

How will our experience of health care change in the near future? Will we take advantage of new technologies and data to empower us as patients? Or will AI centralize analysis and make health care efficient but even more inscrutable? Author, speaker, and activist Dave deBronkart, better known as e-Patient Dave, shares his experience with the panel on how to improve patient engagement.

An “author pays” publishing model is the only fair way to make biomedical research findings accessible to all, say David Sanders, professor of gastroenterology at Sheffield University, but James Ashton and worries that it can lead to bias in the evidence base towards commercially driven results - as those are the researchers who can pay for open access fees. Dave deBronkart just wants patients to have access to key research. Read the full head to head: https://www.bmj.com/content/365/bmj.l1544

In this episode of StartUp Health NOW, Dave deBronkart, Founder, e-Patient Dave, chats with Unity Stoakes, president of StartUp Health, at Health 2.0 Conference in Santa Clara, CA. WATCH MORE NOW EPISODES: https://www.startuphealth.com/marketing/videos/now

As an author and a Ted Talk Speaker, e-Patient Dave deBronkart is an advocate for patient experience, satisfaction, engagement, and safety. In May 2018, Mr. deBronkart was the keynote speaker at the SIIM 2018 Annual Meeting's opening general session. The day before this keynote speech, Dr. Paul Nagy, SIIM Chair, sat down with e-Patient Dave to discuss participatory medicine and how empowered and engaged e-patients are sharing information with their clinicians. "...being an e-patient - empowered, engaged, equipped, enabled." - e-Patient Dave deBronkart

Kidney cancer survivor, health policy advisor and patient engagement advocate Dave deBronkart discusses responsive design as metaphor for co-designed patient care, digital health, patient empowerment & reducing medical error, while keeping healthcare healthy by embracing patients as partners.

Host: Alicia A. Sutton Guest: Dave deBronkart From the annual meeting of the Alliance for Continuing Education in the Healthcare Professions in Orlando, Florida, keynote speaker Dave deBronkart joins host Alicia Sutton to discuss the evolving roles in the patient and doctor relationship. Better known as ‘e-Patient Dave’, deBronkart emphasizes key points in the shift from the patient as a passive recipient of care to one where the patient is an active contributor to his or her own care. deBronkart discusses healthy patient:doctor communication and ways clinicians can employ effective techniques. As a co-founder of the Society for Participatory Medicine and stage 4 kidney cancer survivor, deBronkart speaks globally on how patients should be partners in their care, rather than passive recipients, and how collaboration makes healthcare better for everyone.

This episode is made possible by our sponsors, Loyal, Influence Health, Binary Fountain & dotHealth. You don't determine your digital strategy - your customers do. For hospitals and health systems, what this means is that they have to become aware of the needs, wants and preferences of their patients and potential patients. In this episode, hosts Reed Smith and Chris Boyer discuss how technology has allowed the healthcare industry to evolve to allow organizations to understand and empower patients as part of their digital strategy development. They also discuss the role of the “e-Patient” - and interview Dave deBronkart (aka “e-Patient Dave”) on how his personal journey with fighting cancer led to an international awareness of the “empowered patient” and the role the ePatient plays in transforming our industry. Mentions from the Show: Michael Venske's website Understanding New Power How Patient Engagement Strategies are Changing Patient Expectations Leaning In to Patient Experience The New World of Patient Experience e-Patient Dave website e-Patient Dave on LinkedIn e-Patient Dave on Twitter Find Us Online: Touchpoint podcast Twitter Reed Smith Twitter Chris Boyer Twitter Chris Boyer website Social Health Institute

We are all patients, but only one has come to be recognized as the face and voice for a growing community of activists encouraging the rise of participatory medicine. My guest today is a cancer survivor and patient advocate, Dave deBronkart, better known as e-Patient Dave. The evolving field of health & medicine has many challenges, but having patients pro-actively participate in their medical decision-making shouldn’t be one of them. As an industry that has historically relied on the one-sided expertise of physicians, technology and the internet have fundamentally changed the game. Patients have much greater access to information than ever before. So why then is it still so difficult to get patients to take charge of their health?  As it turns out, e-Patient Dave believes there is a science to patient engagement and behavior change that is not too different from how we describe the mechanism of action of a drug. On this episode, Dave shares what this means, what he has learned in his own personal journey on battling the ugly “C” word, what he believes is the fundamental difference between a patient and consumer, and what we need to do going forward so that patients play a more central and active role in their care. I found this conversation to be both inspirational and informative as I hope you will too. e-Patient Dave is an inspiring human being who believes the voice of the patient needs to be heard around the world. All this and more on today’s episode. Now, That’s Unusual. About “e-Patient” Dave deBronkart Dave deBronkart, better known as e-Patient Dave, was diagnosed with Stage IV kidney cancer in January of 2007. The best information gave him just 24 weeks to live, and with tumors in both lungs, several bones and muscle tissue, the prognosis was grim. Lucky enough to be connected with an academic medical center, Boston’s Beth Israel Deaconess, he received superior care that leveraged the best available research. Once it was clear that he had beaten the disease, deBronkart became an activist, seeking to open the healthcare information system directly to patients on an unprecedented level, thus creating a new dynamic in how information is delivered, accessed and used by the patient. Dave 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. He is today the best-known spokesman for the patient engagement movement, attending over 500 conferences and policy meetings in fifteen countries, including testifying in Washington for patient access to the medical record under Meaningful Use. A co-founder and chair emeritus of the Society for Participatory Medicine, e-Patient Dave has appeared in Time, U.S. News, USA Today, Wired, MIT Technology Review, and the HealthLeaders cover story “Patient of the Future.” His writings have been published in the British Medical Journal, the Society for General Internal Medicine Forum, iHealthBeat, and the conference journal of the American Society for Clinical Oncology. In 2009 HealthLeaders named him and his doctor to their annual list of “20 People Who Make Healthcare Better,” and he’s appeared on the cover of Healthcare IT News and the Australian GP magazine Good Practice. Key Interview Takeaways The ‘e’ in e-patient stands for more than just ‘electronic.’ An e-patient is equipped, engaged, empowered and enabled to ask, “How can I help?” When considering scientific literature, ask yourself, “Was this study done well?” e-Patient Dave has a great respect for the literature, but he understands that it can be unreliable. Doctors are not trained how to examine and validate clinical studies, thus patients aren’t always receiving care based on the latest information. Though we crave certainty, we live in uncertainty. Our body has just twelve ways to express a problem,

Rohan Kulkarni and Clayton Nicholas of Conduent Health discuss patient empowerment with Regina Holliday, Dave deBronkart and Joe Ternullo.

This is the second year in a row, Health Innovation Media put a studio on the ground at HIMSS courtesy of the co-founders at Conversa Health, i.e., Phil Marshall, MD, MBA and West Shell III. We again built an impressive list of guests this year engaging with industry thought leaders, innovators, system executives and the former Acting Administrator for CMS Andy Slavitt. For the compete list checkout:  'LIVE From #HIMSS17: On This Week in Health Innovation'  and for last year's line-up including links to both audio and select video interviews, see: 'LIVE from #HIMSS16: Broadcast Schedule'. In this exchange Health Innovation Media co-host Jessica DaMassa de-briefs with Dave deBronkart aka @ePatientDave. Produced by Gregg A. Masters, MPH for Health Innovation Media. Enjoy!

Dave deBronkart joins us to talk about how being an empowered patient helped him get the life-saving treatment he needed after being diagnosed with kidney cancer. Dave speaks about the importance of finding the latest technology in treatment, how to find a doctor that is willing to be a partner with the patient, and much more. Listen in!   Inspiration, Health, Healthcare, Empowerment, Dave deBronkart, Kidney Cancer   "e-Patient Dave" deBronkart  International keynote speaker, author and health policy adviser Let Patients Help! A patient engagement handbook www.smartpatients.com www.inspire.com Patient empowerment     Music: "Catch and Release" by Pete Huttlinger

The second gathering of Cinderblocks was convened in historic Grantsville, MD on June 4-6th 2015. Organized by the passionate and determined Regina Holliday (@reginaholliday), the event was dubbed by some as the 'Burning Man' for healthcare disruptors. Cinderblocks2 prooved to be an optimum setting for an eclectic gathering of patients, patient adovcates, family caregivers, heath wonks, clinicians (including practicing physicians and advanced practice nursing, as well as nutritionists, and fitness gurus) and a very talent pool of artists, musicians and others committed to advancing a sustainable health[care] economy. Those of us in attendance witnessed some definite magic and here is just one example! Meet @ePatientDave aka 'Dave deBronkart'.      Filmed, produced and edited for Health Innovation Media by Gregg Masters @2healthguru. Enjoy!

Participants in our discussion on person centred care in January agreed that a change in culture and better use of technology could benefit both patients and doctors. At the roundtable: Fiona Godlee (chair), editor in chief, The BMJ Tessa Richards, senior editor, patient partnership, The BMJ Rosamund Snow, patient editor, The BMJ Navjoyt Ladher, clinical editor, The BMJ Angela Coulter, director of global initiatives, Informed Medical Decisions Foundation (www.informedmedicaldecisions.org) Paul Wicks, vice president of innovation, PatientsLikeMe (www.patientslikeme.com) Michael Seres, founder, 11 Health (www.11health.com) Alf Collins, clinical associate in person centred care, Health Foundation (www.health.org.uk) Jeremy Taylor, chief executive, National Voices (www.nationalvoices.org.uk) Dave deBronkart, cochair, Society for Participatory Medicine (www.participatorymedicine.org) Amir Hannan, general practitioner and member of clinical commissioning group board Alexander Silverstein, past president, International Diabetes Federation's young leaders in diabetes project Paul Hodgkin, founder, Patient Opinion (www.patientopinion.org.uk) Ben Mearns, consultant in acute care and elderly medicine, Surrey and Sussex Healthcare NHS Trust Sara Riggare, PhD student in health informatics, Karolinska Institute Rupert Whitaker, founder, Tuke Institute (www.tukeinstitute.org) Stephen Leyshon (observer), DNV Healthcare

Howard (Jack) West, MD, Medical Director of the Thoracic Oncology Program at the Swedish Cancer Institute and Founder of the cancer education nonprofit Global Resource for Advancing Cancer Education, discusses several models of successful online collaboration between patients and health care providers. His podcast is based on his article coauthored with Dave deBronkart and George Demetri, MD, "A New Model: Physician-Patient Collaboration in Online Communities and the Clinical Practice of Oncology."