LMTF Podcast Episode 22: Health Care

Future Health CareHow 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. Recorded 01 April 2018.

Brought to you by Fling: Urban Drone Delivery. Get it fast. Fling it!

Dave deBronkart, better known as e-Patient Dave, is a stage IV cancer survivor and well-known activist with regards to patient engagement. He’s author of three books, internationally known keynote speaker and reached 10 thousands of people with his viral TED talk. He’s also cofounder and past cochair of the Society for Participatory Medicine and HealthLeaders named him, together with his doctor in 2009, to the annual list of the “20 People Who Make Healthcare Better”. In 2018 the Digital Health Manifesto was published, which he coauthored with Dr. Bertalan Meskó.

Episode Machine Transcript (unedited and uncorrected)

Welcome to let’s make future a discussion about.

Technologies and their implications for society.

From all over the world brought to you by fleeing a.

Delivery get it past.

This episode’s future trend discussion topic. Care with Be patient the Broncos are right.

Hi everybody and welcome to let’s make the future let’s start off with a quick in for AROUND of the regular panelists and then I will introduce our guests for today was thank. Microstates them engineers doing a Ph D. at Michigan State University and make some devices that can be used when it’s your health care hire local curry I’m one of the producers of the podcast and I’m not a printer based in Bangkok right now I do a software for drones actually at my business in Canada where I’m originally from got a degree in Computer Science My name is my throw a low. Base in. Saudi working out anything they would have to imagine about as I’m fair a fail and I’m a freelance Siling which interpreter and I’m working in Michigan really excited today and I am. Currently coming from Munich where I’m working on the future of factories so today I’m really excited to welcome our guest Dave Brown Kurt better known as patient they use a stage 4 cancer survivor and well known activist with regards to patient engagement He’s author of 3 books internationally known keynote speaker and reached thousands of people with his spirals have He’s also co-founder and POS co-chair of the society of corporate Tory medicine and health leaders named him together with his doctor in 2002 the annual list of the 20 people make health care better a little more than a month ago the digital manifesto was published which he coauthored with Dr Virgil. Masco David thanks for joining us today it’s great to be here OK let’s start with today we’re in a narrow huge technology and societal changes also in terms of health care today there are a lot of different bits and pieces moving around some rather small some rather huge others rather slow and others rather they how would you describe today’s stable health care and what do you think are going to the most significant and papa’s moving bits and pieces that we start experiencing today sure that’s an appropriate thing to start with because there’s healthcare there’s the business of medicine there’s the culture the cultural beliefs about how care can be and is delivered and all of that is changing the reality is at one level the ability to do health care depends on a more and more accurate understanding of how the body works and that is increasing just in the extraordinary ways every generation brings incredible shifts in the last century and beyond that how much we understand and yet the delivery system by which knowledge and treatments reach the person who has a problem sometimes really gets in the way of achieving the best possible care and the culture of them even when the delivery system is optimized and knowledge is flowing Well there are cultural problems that keep both patients and clinicians not to mention help policy people from necessarily achieving the best so it really is like looking into a kaleidoscope and seeing all these different filters and pieces of glass tumbling and forming new patterns Fortunately if I have a cold or a sore shoulder or something I don’t have to solve all of that but the reality today is a very simple view would say that information flow with the Internet and Internet of Things and devices and social networks information flow. Has drastically change compared to 50 years ago or even 30 years ago I mean drastically change which enables all kinds of new behaviors and performances and at the same time we are democratizing the people with the problem who in the past had no ability to know or say anything useful are increasingly recognizing that they can know and say and contribute something useful and even beyond that they’re starting to see we are starting to see you yourself might have felt that I have a right to say what’s important to me and to be listened to oh how that for hopelessly that 1st answer that is good because you mention a lot of topics that I would love to dive into and thus maybe a good overview to start I have a suggestion Yeah how about I spend a few minutes reviewing the basics of my case because through the unknowable mysteries of the universe the way that I help myself survive a fatal cancer happens to contain a lot of these aspects Yeah that was the 1st thing I want to dive into I mean one of the technologies as you said that we already saw heavily kicking in today the Internet basically brought us a lot barriers to officially consume and produce knowledge online as you said or to found an answer online communities for instance and social networks that would be a great start if you could tell us a little bit of all of us what your personal story regarding this and what your opinion is on how this relates to health care today sure and I want to make clear from the beginning on all of that is that unlike some people who want change I of course want change that’s why I’m called an activist I am not attacking the system as there are some people who say the whole system is just plain not working well I’m alive today because the system achieved its potential in 2007 I had a shoulder X. ray and totally by the like it happened to show a tumor in my lung years that show. And the tumor turned out to be kidney cancer that had spread all through my body I didn’t feel sick yet but I was about 2 and the best available information at the time it was not very good information but the best available evidence said that my median survival was 24 weeks in that study that had been done half of the people in my condition were dead within 5 and a half months instead in my case I was diagnosed in January my kidney came out in March my treatment a treatment that usually doesn’t work started in April of that year and ended in July of 6 months after my diagnosis my treatment had ended and I’ve had nothing since now the question of how did this happen along the way an import and but this is no guarantee I would never say if you get on the Internet you’ll survive cancer I had a lot of luck but along the way my primary physician once we knew it was kidney cancer happened to know of a good patient community on the Internet because he happened to be a doctor Danny sense happens to be one of the original founders of the need patient movement empowered engaged equipped and able and each patient is the opposite of a patient who sits there and says I don’t know you’re the doctor you tell me what to do some people preach health care like a car and a car wash you drive and you get things prayed on you and then you drive out and so I joined this patient community and there was no guarantee that this would save my life but they said we know what it feels like and that was an amazing thing by itself because I’d never talked to anybody that had kidney cancer they said this is an uncommon disease you have to find a specialist hospital there’s no shortage or there’s one drug that sometimes cures it usually doesn’t work but when it does about half the time the response is complete and permanent here I am 11 years later but the side effect. Sometimes kill you and this is why you have to go to a specialist hospital and here are 4 doctors in the Boston area where you live to do it now that’s useful information and here’s our 1st hint of the arriving future here we are 11 years later none of that information is in the medical literature or even to this day so the 1st thing that starting to happen that is already happening is that useful information exists that goes beyond the literature and to make the rest of my story short the specific mechanism I think about this in terms of you know if patient think Ajman is supposed to be the biggest drug of the 21st century and some people have said then we need to understand what’s it’s mechanism of action same as any other drug well consider I qualified to use this drug most people don’t and as we were preparing for the treatment to my doctors I said the side effects sometimes kill people how do I prepare and they said that’s an interesting question nobody’s ever asked us that So notice I didn’t go around the doctors I asked the doctors 1st they said they didn’t have any information so I turned to the patients and I got 17 stories from people who had been through this treatment of what the side effects were like for them and the way it all ended up is a few years later the B.M.J. British Medical Journal asked me to publish my story that was a complete surprise I had no idea I was doing anything unusual but they did ask me to publish my story so I asked my oncologist what would you want other doctors to know about my case because I don’t just want to spout off my own thoughts I want to change the culture of medicine and he said I don’t know if you could have tolerated another medicine if you hadn’t been so informed so here. We have my oncologist one of the best in the world on this is he saying that he believed in permission I got from other patients on the Internet help save my life about open the vast world thinking well if that’s the case then how can we make the most of achieving the best possible Pritam and including the voices and experiences of people who have no medical craning and that’s the thing that’s what opens up this giant world because our entire paradigm of health care as Ben it’s hard to become a doctor or a Ph D. researcher so what could patients without that training have to contribute Thank you that’s a wonderful story and I have so happy that it worked out for you and that you’re able to be here and speak with us and I think that story has incredible resonance and has such a great ending but if I could play devil’s advocate for a minute maybe to help you reinforce your point even further if patients are perhaps in a vulnerable position they’re emotionally vulnerable emotionally even maybe compromised isn’t there a role for a trusted doctor to tell them what to do and is there an argument for keeping information away from them for their own good for example patients might request unnecessary treatments or they might in talking to one another come to some conclusions that go kilter to evidence like for example we see these anti-vaccination movements in the U.S. right now where patients are actively refusing to listen to the advice of their doctors I wonder if it’s possible for the pendulum to swing too far in the direction of patients and control of information and talking to one another we could have an entire hour long discussion that you’re absolutely right so you’re absolutely right regarding the issues of certainty but on the other hand I didn’t need to ask you to rewind a few of its. Topics in there my colleague in the patient movement wonderful woman named Susanna Potts who is on her own now she used to work at Pew Research she had a brilliant observation about the vaccine problem we all agree I think anybody with a mind that’s at all scientific agrees that certainty and reliable think are important and understanding how to I mean that’s the scientific revolution right but she pointed out the smoking gun in the vaccine problem was that the peer review process completely failed that journal failed to detect that the data was probably one that was forged and so the N.T. back seen people latched on to that and said Ah ha he we told you a top scientific journal has published that vaccines cause autism and just as with any other findings that needs to be reversed cause horrible problems the whole issue and think carefully about this because this is part of a much larger global political change Democracy means people get to have a voice even if they’re stupid all right and in the United States current political situation there are a lot of people on both sides of the aisle who think that the other people are all stupid and indeed that is the challenge one thing is certain and again we could go on for an hour just on this subject one thing is certain I had an epiphany about a tarnal tearing when my granddaughter was born one of the wonderful results of me surviving is I got to walk my daughter down the aisle at her wedding and I got to become a grandfather and and weeks after people talk about paternalism as if it’s a nasty arrogant thing and indeed maybe there are some nasty arrogant but turn alist the people but when I saw my. Daughter in the backseat of a car at age 10 weeks just at the age where the beautiful you will love me for ever smile is coming out that child’s face I realize she’s sitting in the back seat in a car seat facing backwards and she’s being taken where she needs to go now that’s essential because she has no capacity to do any of that but now consider the World Bank the definition of empowerment that they use is increasing people’s capacity to make choices and take effective action so as that child who now is very probably says that she is 4.8 years old now but her mother is a science teacher and has taught her decimals she has opinion she has the ability to choose clothes out of her dress or her mother doesn’t always agree that’s for sure but it would be a mistake keep her in the backseat because she might make mistakes Now having said that I always turn to my doctors in our society for participatory medicine the symbol is a handshake I don’t think I’m an oncologist to this day I know I had kidney cancer to this day I don’t know what pray at me but changing the role so that the person who has the problem begins to have a voice does not mean we reject expertise one last item on that indeed is that people wonder these days we talk about patient centered care patient centered care to me means you don’t just do the same thing to me as everyone else sometimes I know some people don’t want to think about their choices they just want somebody else to decide and that’s fine with me my goal in all of this is how do we help health care achieve its best potential now thanks for listening make sense Yep. Thanks for sharing that’s all very very intense and touching story really I mean this is I always thought I would be you know like the most annoying patient because there always are so many questions when a doctor and a mathematician I always try to really understand everything but a certain conditions I always do my research online and I always go over time with my doctor so I can ask other questions and have always wondered how I compare to other people if I’m the most annoying patient or not but yet maybe not all of thinking everything one step further than the patient engagement that you mentioned one topic which has kind of absolutely fascinating is that as more individuals today are becoming consumers of them in college medical gadgets become financially accessible very recently actually innocent people are sending salads a lot even poop her mail maybe also e-mail soon this not sure about that but. You can today you can you can request analyze and leverage data regarding D.N.A. blood values allergies got healthy Xander on the very short a goal we’re not so easily available at all at the same time this comes with a lot of responsibility particularly because consumers might not be educated enough to deal with this enable them to date how do you assess the rise of this democratization of medicine and over lead to what we discussed but not particularly with all the right technology in mind I think this is also what the often calls on there are biohacking movements Yes And again this is a superb question with many terms of a wider scope to see different answers in the patterns and you know when I use that metaphor about kaleidoscope I don’t do it has really really the reality we have multiple dimensions in this chaotic and chaos as in chaos there yeah I don’t mean out of control there are so many interacting factors here in my book patient help I hope a number of simple. Months like for instance we perform better when we’re informed better and the text of that says that nobody can perform to the top of their potential doctor or patient if they’re lacking some relevant information and that’s a very simple statement hard to argue but it explains For instance why if there’s a mistake in the medical records a good doctor can prescribe the wrong drug so that teaches us that it’s really important to know whether what’s in your medical record is correct or not Similarly it is a mistake with patients to think that when they have no information they can’t do anything useful and then conclude so why bother giving them any information now that sounds a little silly but it’s true the teeth information officer my hospital believes that there’s no point in giving patients the information in their medical records because they wouldn’t know what to do with well and I’d say well like prying me aside former Vice President Joe Biden said to Judy Faulkner the head of epic last year she said well you wouldn’t understand that what are you going to do with it you know the big medical records system and he said it’s none of your business what I’m going to do with it it’s my data sorry would you repeat the point of your question because I went on a tangent The problem is very interesting so I think technology’s actually allow us to get data about our D.N.A. I mean the question of the ownership maybe we’ll talk about this later but for now it’s just the view of the interest in the democratization of the centralization of medicine and health care yes we have access now to many little pieces of information I mean if you sense alive out to 23 and Me the consumer D.N.A. company they’re not sequencing your entire genome but they’re giving you a few things we have our hands on pieces of information and nobody is completely certain. What it means on the other hand there are isolated spots in breast cancer there are certain genes that are very significant and are easy to reliably test or I would say we’re in the beginning of a new era where we have access to individual facts or more than individual acts that were not possible 50 years ago and we’re not entirely sure yet what it’s going to mean we do know some things and I’ll bet I mean we certainly 102030 years from now when my granddaughter is an adult she will have access to just an absurd amount of information that we don’t today and at the same time if I can talk briefly about fitness devices there is an important like I use the where are Garmin wristband Now I use that at that and what we’re finding of course the Silicon Valley people and many doctors like to say well I read an article most fit bits and up being sold used on e-bay therefore things have no use now that’s a gigantic mental error to say therefore these things have no use I have never been an athletic or physically fit person in my life and 3 years ago I got diagnosed as pre-diabetic and buying a device did not change my behavior but I also got into a behavior change program and I lost 40 pounds and I became not pre-diabetic anymore and it was assisted by not caused by but enabled by the fit that I have and after and being able to easily check how many steps I’ve had and I also for about 6 months I tracked my diet not in great detail but it was enough to change my life so the future there are a lot of people who want to think I don’t need to change my thinking because sometimes. The new stuff doesn’t work but you’ll never see the future if you think that way what we really ought to be doing when we see something new happening is thinking how did that happen Thomas Edison when he was inventing things with a K. generally right in his notebook just the big word phenomena with an exclamation mark like something that happened what was that yeah I think all these wearable technologies I mean this is the Such a new wave length to acquire mountains on data that’s super interesting to me and I have to agree I’m also wearing some some gear fits smartwatch I’m stuck changed a lot of my perspective particularly on sleep for me and I’ve also you’re right I know that you said it I’ve twice tracks just for a week I tricked my food intake in terms of my cube micronutrients and everything and it was so eye opening you realize that you were so wrong on so many assumptions that you were doing right because you felt like you were eating healthy but you’re actually getting sometimes too much to a fairly recent and it’s very eye opening very of justice to everybody to do it I want to give you 2 very short versions listeners can google these of things these are so extreme that you have to really stop and think with your scientific mind what happened here so the 1st one is a movement in the Type one diabetes world called Open A.P.’s open automated pancreas system you can search that hashtag look at that website this is people with Type one diabetes who have had into their digital devices their glucose meters and their insulin pumps and they wrote their own software that they have donated to open source to do all the calculations and automatically Delf themselves with insulin and if you look at the screen captures that they tweet from their devices on that hash tag you’ll see that they have blood sugar that is better control than a person with a working pancreas. And they have done this and tiredly without any doctors involved that you really have to ask your science mind seriously is that really happening what does it mean if somebody with a deadly condition can solve their own problem better than the industry in this whole hash tag when they started that was we are not waiting if they were tired of the industry saying it’ll be just another 5 years so there’s one example the other one people will commonly listen to my story and say well but they’d your white upper middle class college educated MIT graduate male in the United States of America blah blah blah because they are experiencing cognitive dissonance their mind is saying wait a minute scientists create value in medicine people without college educations can’t do that now Google and then Kim K. I am good settled G.-O. O.-D. S E L She has 2 rare conditions and against her doctor’s orders she kept googling and googling and after years of this she successfully found a common genetic cause for this and her doctors then created a poster for a scientific session with her as one of the authors and here’s the paradigm practicing in the head the conference then would not allow her to register for the conference where her poster was being shown because she didn’t have enough medical credentials ha ha isn’t that funny therefore if it really goes to show you how medicine is got this mystique about it and wow like maybe you know if we keep Pedia can be accurate then why can’t crowd source medical insights be accurate as well I think Michael or anyone has a question for you and if so I just wanted all the dive into the quality of living will and talk about the technology that I’m making a difference in OK right. Now and by then my guess is that the future you may show a little clip the I did mention the heat because I think where it goes I just all of those who talk about more of ought not noble or robust that soldiery genetics seen a child they had the think my classmates and a teacher maybe Absalom if I think that those so those are at an entirely different level ad and the only thing that’s vaguely like that that I have ever touched on is the work that’s being done with 3 D. printed medical things whether it’s I’m sure you’ve seen the 3 D. printed artificial hand or an N.P.C. and so on my daughter is a high school science teacher and she has been able to use crisper tests 9 at a summer science program she got into it MIT that’s not robotics per se but it certainly is you know the idea of some saying from outside crawling around in the tissues or even within the cells so it’s funny because right I see everything now no like that as a new way for the doctors and Ph D. researchers to do what they’ve always done without the patients being involved but it’s hard to imagine that 50 years from now we would not have had a case where somebody at home created their own nanobot of one sort or another I mean it all is very much science fiction that’s the sort of thing where I think my colleague there see as more awareness of what’s going on today because that technology is in the patients and these days and that’s where I think talking about patient hands one overarching topic I guess is data today vs from robots current gadgets rather goes from whatever so there’s so much potential in this data with patients but also basically for society as a whole and know exactly for example I have this project from Google X. in mind I’m not sure what it’s called exactly but they basically matter analyze the data coming from wherever. Holmes but also from clinics and everything and try to make this huge like work in progress alive study that has so many participants but there’s basically a ridiculous amount of potential in there with that in mind and everything that we discussed earlier the comes this huge question for me who will actually own the data who should only date up worst scenarios here this is on the verge of becoming a war in the United States because it was one thing when all of a patient’s records existed on paper in the doctor’s office legally starting in you know that the big law that has to do with data access in the US as Health Insurance Portability and Accountability Act and it’s regulations include that they have to let me see a copy of everything a lot of people are funny this is a lot to do with the finances of health care in the US a lot of people don’t realize that all started back in 1906 with this law that said you can take your health insurance to another company and that means you have to be able to take your medical records because otherwise how could your insurance cover you well the problem today is as the information gets computerized it becomes technologically easier to move a terabyte of data gigabytes of data than if it were all on paper or films but that then reveals that there are often major social and cultural objections to that because many doctors it turns out don’t want you to take your business elsewhere so now and in the US Also there are significant legal issues I don’t know how universal they are having to do with the legal concept of ownership if i literally own my data then you can’t do anything with it without my permission and that gets into all kinds of complicated problems that. I don’t understand I have an attorney colleague in our society corporate as a tort medicine they’ve been Harlow is very.

What a lot of us are think it is regardless of who owns it I want. Unlimited access to every bit of it literally everything and if I find the mistake Senate I want the holder of that information to be required to fix the mistake now they guy sing our medical system in Pennsylvania was on the front page of The Wall Street Journal health section a few years ago they did a complete audit of several 1000 records and that 85 percent of them included a mistake some of them were minor but some of them were not minor and bath can obviously as I said earlier if the information in the record is wrong then the best doctor in the world can prescribe wrong medicine and harm so I want to just step back briefly to this illustrate how the cultural problems or cultural context in the kaleidoscope can change what the technological question What was because many doctors have believed that the record that they accumulate in the process of taking care of you is their property and we we want to know activated a sense especially if I’m taking care of my daughter or my granddaughter or my mother I want to know what’s in the chart so I can help prevent errors I really like how you talk about not just the ideological sort of paternalistic reasons why institutions and doctors try to hold patient information away from patients but also the commercial reasons why they may have a strong incentive to try to make the information not easily available like it in your article over my dead body why reliable systems matter to patients you’re talking about how commercial systems don’t have much incentive to make the data available because just like with doctors they want to make it hard. For patients to change and introduce high switching costs for patients so all that makes a lot of sense but I think there’s another question now from Michael so go ahead so I was going to see he actually to be given the pay to evolution of health ecology I call to see should we be looking at changing the way we educate see here and then shall we because modifying the data not the analysis all those different people call them and we’re saying hi again or she just popped up a little going to be running the business OK So I mean what inside do you have about how we recorded it hit the pause will change the future well that’s another 600000000000 dollars question that number of course is just as fictional part of my work so a little bit of my background on how I moved from cancer into this work may be useful in 2007 I thought I was dying and that I recovered and then 2008 I started learning about health care and then a 1009 I discovered that there was a bunch of garbage in my medical record and I wrote a blog post about it and it up on the front page of the newspaper just before a conference in Boston where I was scheduled to give a little talk and I ended up as a surprise celebrity and started getting invited to give speeches and testify in Washington all of this was just head spinning to me you know I never asked to give a speech anywhere and a bento over 500 events in 18 countries now and I’ve had a lot of conversations with people that have let me see something about how they think about health care Well I’ve ended up reading several dozen books about the history of science in the history of medicine to try to understand why people smart people think the way they do and I need to ask you to repeat your specific question because this is leading up to that what was your question my question was really about how do you think that they will be correlated. Efficiency changing if you do yes thank you so one thing I learned is that for a long long time medicine was based just on you know the best advice came from the most respected doctor and and amazingly there really wasn’t much science to it and that continued all the way into the 1900 the worst example of that was the practice of radical mastectomy for breast cancer patients where women for decades were brutalized truly but toward just because this Dr Hall said said it was the right way to do it and everybody knew he was right and then when they finally did a controlled study they found out that radical mastectomy had 0 benefit at all now when that happened I believe it was in the 1980 S. We already HAVE to her a sense of doctors who have been through medical school who are out there practicing and not been taught anything about what we now call evidence based medicine Now meanwhile we have this world where in the last 15 years the editors of 4 major journals New England Journal the B.M.J. Lancet and JAMA have all said publicly that a lot of what shows up in their journals is bad science so now you know we think about well patients get bad information from the Internet well how it’s more frightening to me that doctors get that information from journals sometimes. So now to get back to how do we train a new generation of doctors in information theory information flow the importance of this because we just had a Facebook thread if you remind mail sent you a link to it just this weekend of people with dozens of stories of how information got lost in the system and was not present and either a problem happened or the patient and family were being careful so they prevented a problem and just today there was a new saying then that showed the difference between 50 years ago the vast majority of doctors practice in an office with one or 2 doctors and that population has been declining as the number that work in a hospital with a 100 or more doctors has been increasing the doctors who are very successful as a single practitioner and these are the ones I grew up with the took care of me all my life need to learn different skills and students need to be taught different skills in order to function as a team member where it’s essential but the important information gets carried forward as right now failure to carry a piece of information or words can be as disastrous as a wrong diagnosis we need to teach doctors think of something go ahead I’m so sorry I interrupted you want to finished your sentence with well I don’t know no I’ll talk forever so go ahead.

I was like you’re talking about you know what we need to teach doctors and I’m glad Michael asked that question because I was wondering the same thing and I was wondering a long the lines of you talking about flow of information and not missing anything falling evidence based practice but I’m wondering what kind of social training doctors might be given to kind of store them in this area where patients are more involved in almost more trusted have a role in their own care in our society we are. Starting an initiative to work that kind of skill into the medical education curriculum in my book let patients help it’s not an answer to the curriculum thing but I ask my doctor see this is participation Dr Danny sends ask him to add some tips sheets so that tips part of my book the 1st page is 10 things eep agents say to be involved in their care and then we have 10 things from Dr sense 10 things doctors say that encourage engagement and he also added 10 things doctors say that discourage engagement you know I’d be happy to send you a link to that as well yeah I’m not a very I didn’t I was I had heard Yeah it is I have just one about because I’ve heard of doctors I have some friends that just like recently became doctors and they said you know I just hate it when a patient comes in and they think they know because they’re right I look at Pedia in so that was something that I had was a negative like just as you said in the beginning the doctors the experts don’t cut in at all I think that’s probably a conception that’s probably so hard to break and yet this is why what I’ve been spicing friends patient colleagues help us always include you know if we want doctors to have empathy for our situation we need to have empathy for the doctor’s situation you know one of the the e patient white paper was a manifesto that the founder of our book was working on when he died unexpectedly in 2006 and it’s colleagues finish that including Dr Sams one of the anecdotes in there was he talked to Donald Bloomberg the director of the National Library of Medicine who said that there’s too much information for every doctor to know everything and this was calculated back in 2004 there were 800 articles being published every day so he said if I read 2 of them after a year I’d be 400 years behind and 8 years later in 2012 the insert of Medicine said there were 2200 articles being published every day the lesson here is it’s now. Insult who a physician if a less prank person as seen an article that they have and what you commonly find here individual people with no experience and no savvy are likely to come up with useless observations the same as if they’re shopping for a car and they never read articles about what to look for and the same as in democracy when people become informed and start talking with each other and become more sophisticated in their thinking it becomes possible for citizens to contribute real value. I’m sure that those doctors have been taught in the old culture that either says or implies people with training know what they’re talking about. Right and people without training don’t well and one other amazing fact is that the ensuite of Medicine published a paper in 2001 document think they had gone back and looked at actual billing records because they wanted to assess when new advice is published how long does it take for doctors to start using it you know because the bill for doing the new thing and what they found was that on average it takes 17 years for half of doctors to start doing new things while if you want to say you want to say patients don’t know what they’re doing then if our goal is to do the best possible he also got to look at well how does that compare with doctors in reality of course I’m not saying all doctors are slackers or fools or incompetent Now the reality is we have a huge number of people getting old today because people like me are being saved I didn’t die so I’m getting old so the trick then for young doctors to be taught is realize that we no longer have the old reliable pathway the medical institutions will get the best knowledge to the point of me and we need to rethink how we go about that pain instead to have a good bedside manner to have an empathy in the suggestion that they read about I’m glad you said that it is about having a good relationship it’s true it’s also very interesting was that earlier I’m always one of these question Oscars and doctors respond very differently in terms of openness and you know those reporters to cover questions and I think you know there’s a lot of empathy but also a willingness to accept that they might not know everything sometimes something beyond literature although there’s risk might be an interesting try I want to give you one quick tip of. That point is who brought up the white part of the old assumption that we all live it is that dialogue like that should happen between patient and doctor during a doctor goes up what a lot of medical practices are offering now is somebody you can talk to between visits whether it’s a nurse or some insurance companies have a cell the way to get at this ask your doctor or your doctor’s office is there someone I can talk to between visits to get answers upon questions that I have thanks very much that’s a good point I have with these one director has offered me his mobile phone number so they get them if not worse to wow wow great live maybe if the the last thing I want to talk about so until now we talked a lot about the pillars of the future of health care which kind of independent of technology we remain somehow for one doctors as patients and the health of the ADA Lastly I would like to add another topic that for me for who has perspective that we have had so far in our discussion and that’s basically taking a step back and I would really love to know with everything that we learned today how should governments and companies position themselves who successfully view with the upcoming major changes in health care well governments are involved in politics and that’s a world that has strange problems but if we assume for simplicity that we don’t need to worry about political arguments we’re courses a tough situation especially in the U.S. these days but also elsewhere if we assume that what we’re trying to do is keep people healthy and get people healthy as efficiently as possible a large part of what needs to be done is to help health care achieve its potential and that means for our purposes in this conversation being conscious in our mind of what are our assumptions about how you should go up. Well I think we’ve demonstrated in this conversation that it’s no longer valid to think that health care is achieved by a patient going and sitting down with the doctor one on one and having these conversations which are hard to schedule and all about really good things can happen and all aspects of medical science and health and pear If medicine is viewed as a partnership one thing you’ll find by the way is that if a patient starts out as a passive person like a car in a car wash they won’t think of having thoughts of their own but as they start to realize that’s possible partly because their doctor invites them you know have you ever had a doctor as he was known that he Web sites that are news hole that’s what my doctor does. Anyway I start to think how can we optimize how can we reengineer how information gets to the doctor to the patient and develop the citizens capacity to take care of themselves and find information in a way that’s better and better and now you can from a government perspective you can certainly put in regulations that encourage data sharing encourage the data moving among all the people who might have me or might have use for it in terms of what you will I really encourage people to create a new model of simpler care not everything has to be a full bore doctor’s appointment in the traditional form help is a wonderful thing not everything requires that you be face to face and certainly if I break my arm I’m not going to handle that with Skype right but on the other hand a few years ago I was giving a speech in Switzerland and I noticed something strange with my leg I wondered did I have a blood clot from the plane’s flight so I. E-mailed my doctor and he said well I don’t know what does it look like and I did use Skype I pointed my webcam at my leg and he said who was like you should go to the clinic and the bomb which I did so open the mind don’t assume that the way we have practiced medicine in the past is the way that it should be practiced learn everything you can about new ways of doing things another great example of this is the i Phone attachment that will let a parent look into a baby’s ear an older scope on the i Phone And keep in mind. We’re discovering new ways of bringing information and people together into a new kind of partnership do what we can to encourage that and innovate as we go thanks very much thanks that was really enlightening nothing warms my heart like hearing somebody you know a well educated well informed heart say that I contributed something and like me at what I live to do again I’m I’m alive because in my case health care achieved its potential even when the odds were for a Stickley bad so I am thrilled that I’m getting increasing interest from other countries I love to speak in other countries I love to consult with people so thank you for the opportunity of speaking to your audience today thanks to you it really appreciated his conversations on really interesting and for my part it’s been an honor as well Dave it’s been an honor to hear from you I’ve listened to your TED talk and I really find your perspective to be not only enlightening but also really aligns nicely with a lot of other positive notions of freedom and liberty so I think yeah it’s really great to hear from you personally when this question our listeners how can they find out more about that work that you do and if we want one resource about you which we have be well aside from the TED talk my website is patient Dave dot com and there’s videos of past speeches and links to my book let patients help as a short simple thing it’s been translated into 9 languages to my amazement I volunteer and then our society for participatory medicine is just participatory medicine dot org has lots of resources there we are a young society we’ve never had any substantial funding we’re a bunch of committed people who are working on changing the culture of care we had our 1st ever comprende last part however and our next one will be this coming October in Boston who thanks very much and congrats to all the achievements of your activism I really. Highly recommend to everybody to watch more of your speeches I think you’re a great speaker and I enjoy every single one of them so thanks for today’s discussion I just want to thank they all more time to share his experience. I learned a lot and looking forward to learning from the resources just patient and take part in our healing process with Gracie at admission admission needed.

But deeply seated I think.

As I said I really enjoyed it thanks very much Dave for coming on the show and thanks to everybody for participating OK thank you I thank you bye bye bye bye. And let’s make the future preaching the voices.

Balanced way.

Michael. Michael let me. Say.

Music and editing Christian tell to.

Use it.

Let’s make the future


health care (18) medical record (6) health care today (2) kidney cancer (4) participatory medicine (3) centered care (2) things doctors (2) cultural problems (2) annoying patient (2) eye opening (2) hash tag (2) radical mastectomy (2) 1st thing (2) patient engagement (2) specialist hospital (2) people healthy (2) car wash (2) evidence based (2) patient community (2) delivery system (2) vaccine problem (2) nasty arrogant (2) breast cancer (2) care achieve (3) science teacher (2) patient movement (2) D.N.A. (3) B.M.J. (2) MIT (2)


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s