("i can't tell you why" by the eagles) good afternoon. is this on? okay. welcome to all of you to the 30th annual laverne gallman lectureship which is being presented byour nih-funded p30 center for transdisciplinarycollaborative research in self-management science.
that center is directed by dr. miyong kim who is with us somewhere here today. there she is, she moved. thank you. they are the organization thatput all these ideas together and has organized it here today. i thank her staff as wellfor making that possible. as i mentioned, this is thelaverne gallman lectureship and i cannot personallybelieve that it's been 30 years
that this has been going on, but it's a very specialendowment and event for our school of nursing. typically when we have a lectureship, a single donor writes a check and establishes alectureship in their name. that is not what happenedfor this endowment. it's quite a different story and i am sorry i have to tell it again
because i think it'sworth all of you hearing if you don't know it, especially students. in 1984, one of our newdoctoral program graduates, mary lou bond and severalof her former classmates, pledged $500 each to start the fundraising to establish the laverne gallmanlectureship in nursing. it was in recognition of dr. gallman who was the graduateadvisor for many, many years
at this school. dr. bond sent letters outto all the masters students and alumni as well as thedoctoral students and alumni while jeanette parchorn who was the president of angs at the time, or association of nursinggraduate students, spearheaded the work for those students. i can remember being a poor ... i can still remember being poor,
second year doctoral student at the time and i was thinking, "$25,000?" that's what they hadto raise and i thought, "well that's impossible. "how will they everraise that from students "and new alumni?" the graduate students greatly valued and deeply appreciatedthe work dr. gallman did and they did support this effort.
students, graduates,faculty, staff, and friends did what was seemingly impossible in 1985. they gave $26,500 to createthat initial endowment. the regents matched it under the regents endowedteachers and scholars program and doubled that endowment to $53,000. that was a lot of money in 1985. i have to personally say thatwas the very first donation i made to this university.
i remember it as that andit's really exciting to see how it has grown over time. for those of us who werepart of that initial effort and also great beneficiariesof a great educator, to see her name live on, she did die a couple of years ago. now that endowment is over aquarter of a million dollars. dr. gallman continued tofund it herself many times and left a gift in her will as well.
for many years, as i mentioned, we were blessed to haveher here for this lecture. she always came and was always thrilled to see our new students andfaculty that were continuing. i used to consult with her and say, "dr. gallman, is this okay? "what do you think about this lecture?" she would always say to me, "you know, alexa,
"i'm in favor of whateverhelps the students. "you decide, bring a lecturethat will help the students." truly, that summarizes her great career at the university of texas at austin. now i'm thrilled to welcomeyou here, our students. it's great to see abunch of different faces, people from other disciplinesas well as some of our advisory council membershere with us today. i'd like to introduce dr.marge benham-hutchins,
an assistant professor of nursing, who will introduce ourmost distinguished speaker. (clapping) i'm vertically challenged. can you hear me okay? great. i'm pleased today to be introducing our guest. i wanted to start with a question.
how many people here haveseen the ted talk video? show of hands. a lot of you have alreadyseen that, let patients help. that video tells the story of in 2007, when our speaker was diagnosed with a rare and terminal cancer, he went to online sources, online patient support groups, and through that he wasable to discover a treatment
that eventually saved his life. that video has gone viral. if you haven't seen it,please go on and see it. over half a million views. it's been subtitled in 26 languages. dave has gone on to be one ofthe world's leading advocates, world's leading advocatefor patient engagement. among his many accomplishments is that he's the co-founderand current co-chair
of the society for participatory medicine. that's for patients and providers. check it out and come and join us. he's a health policy advisor. he's testified in washington on the patient accessto their medical record under the electronic health record meaningful use initiative. he's the first patientto have been inducted
in the healthcare hall of fame, internet hall of fame. this year he's a male visiting professor in internal medicine. he's a very, very busy person, but in his spare time he's a blogger and his blog is now archived by the national library of medicine and has been since 2012.
he's authored three books. the most recent, which you see up here, is let patients help,patient advocacy handbook. on a personal level, i'm so pleased to see everybody here because i want to share my excitement. i am very, very inspired by his story, by his passion, and his calling for thepatient engagement movement.
it's my pleasure to introduce my friend and fellow e-patient, dave debronkart. i'm a little on the hyper side so i prefer the lavalier mic. it's great to be here and ireally am honored and grateful for the recognition that this lecture gives to the patient engagement and patient-clinicianpartnership movement.
a quick note about my name. i'll explain what e-patient means. i worked in marketing before i got sick so when i started blogging, and it was actually jon lebkowsky, who's in the front row here, who taught me about twitter back in 2008. this guy has been doing social media before the internet came along.
i'm not kidding. back in the era when people were saying, "who cares if they had atuna sandwich for lunch?" because that's what they thoughttwitter would be good for, he was saying, "i'll tell you what it'sgoing to be good for," and he was right. anyway, i picked the name epatientdave and having worked in marketing,
i knew that a consistentbrand is important so my website now is epatientdave.com. on linkedin i'm e-patient dave. everywhere you go, you googlee-patient dave and i pop up which is good because myreal name is debronkart and nobody knows how to spell that. anyway, i have so many things. this is a homecoming. the e-patient movement
started 22, 23 years ago in austin. the founder of the movement, tom ferguson, who you'll hear about, was from austin. that's how he know jon, that's how jon and i met. we will get to that. the important thing here, the topic i was asked to speak about
is how patient-clinician partnership changes what's possible. there is much uglyargument going on right now because this is a social movement and like all social movements people resist and get angry. 2if you're on facebook, you may have seen this week there's a new coffee mugpicture that's circulating
saying, "please don'tconfuse your google search "with my medical degree," which has so many dimensionsof wrongness to it. the blog of our societyfor participatory medicine is e-patients.net and there's a blog post there that i wrote the other day about it and there's like 60 comments with some doctors saying,"keep your damn google
"out of my office," and some patients saying, "but google solved a complex diagnosis "that my doctors hadn't found," and back and forth and back and forth. it's a time of culture change. it's a social movement. how i got here. i worked in high tech marketing,
specifically typesettingmachines if you can believe that. you want to talk aboutan industry that changed? there's a parallel here,a relevant parallel because what killed thetypesetting machine industry was that one of the core assets, fonts, got loose from inside the industry. they used to be if you wanted to use fonts you had to either owna typesetting machine or talk to somebody who did.
now you all got fonts in your computers and most of you in your phones, and in exactly the sameway that people say, "patients are doing stupid things "with health on the internet," we said, "you can't handle the helvetica. "you don't know what you're doing. "you're doing stupid things. "don't mix serif andsans serif," and so on.
what happened is you all got smarter and a really important thing happened. once you had the power, the whole industry driftedin the direction you wanted and away from the direction that the manufacturersof the machines wanted. that's what's beginningto happen in healthcare. anyway, in 2007 idiscovered i was almost dead and got better, true story.
i'll cover that briefly. in 2008 i learned aboutthe e-patient movement because it turns out, lucky me, in boston my primaryphysician, dr. danny sands, who's the co-author of that book, he knew tom ferguson also, which helped save my life. in 2009 that society was formed and people started askingme to give speeches.
i'm like, "what? i don't knowanything about medicine." what happened, to make a long story short, and this is the power of social media plus traditional media, i discovered ... anybody remember google health? it was like google was going to collect all your medical record information and take good care of it for you.
i blogged, "it will be a cold day in hell "when i trust google withmy health information." then early in 2009, i had a blog post withdevils on ice skates. cold day in hell. i had decided that i was more interested in encouraging innovation than i was worried, because what made typesetting
become desktop publishing and explode, was that the people who had the problem had access to the assetsand they could innovate. i decided that's what iwanted healthcare to do. one thing led to another. i discovered because of google that there was garbagein my medical record. i blogged about it and theboston globe newspaper called and said, "we think this is important."
people have said thisis like a disney movie. blogger in nashua, newhampshire is blogging away, the newspaper calls and theyput it on page one no less so now we have the newspaper flying out of the movie screen at you there was a week beforea conference in boston, somebody said, "is e-patient dave here?" i was up in the balcony. i stood up, somebody took outtheir iphone and true story,
tweeted, "pope davepreaches from the balcony." a month later i was at my firstpolicy meeting in washington highly improbable. anyway, i felt a calling. i've had lots of good jobs and i've been very happyto be alive for a long time but i've never felt like i had a calling or reason i'm here. anyway, 2011 it went international,
i did the ted talk. one of the senior physiciansat my hospital, warner slack, has been saying, "since the 1970s "that patients are the mostunderused resource in medicine." i don't take this lightly. i know there are some people talk about, "well let's just listen topatients and sing kumbaya "and healthcare will get better." i'm trained as an engineer.
i have an engineering mind. i want to know what happensthat makes this work. i have no medical training so let's just hold thatquestion in our mind. here's one key thing that is mentioned in thebook that i co-authored with my doctor. everyone performs betterwhen they're informed better. the increasing access to information
brought on by the internet it does not make me an oncologist. it does not make me a nurse. it does not make me anything, but it changes what'spossible for me to contribute. to deny this is to be outof touch with reality today and it holds back progress. the corollary is it's perverseto keep people in the dark and then say they're idiots.
say, "well no, don't givethem that information. "they won't understand it anyway. "why? because they've never seen any "so don't give it to them." this is at the core of fiveyears of speeches here. theme one of today's talkis reality has changed. continuing theme one. there's been a profound shift in where competence andinformation can be found.
that profoundly alterswhat patients can know, which changes what's possible in medicine, but social movement time. when what's possible changes,people tend to resist. i have two slides later on about some parallels with feminism. theme two, culture is changing. the university in the netherlands on the german border,the town of nijmegen,
funny dutch names, radboud university medical center, they are profoundly out infront of most peoples' thinking. there's a man there named lucien engelen who will no longer speakat a medical conference even for pay if they don't have patientsinvolved in producing the event so that it's designed fromthe patient's perspective. this august they launched a new curriculum
for their medical school developed over the last twoyears with patients involved in the redesign of every clinical course. can you imagine that? they asked me to speak there. it was a hot august day and they had too manypeople for any auditorium so it was out in the sun under a tent and the fans weren't working
and i said, "i got to dosomething about this." i started with bruno mars. ♫ this hit, that ice cold ♫ michelle pfeiffer, that white gold ♫ this one for them hood girls ♫ them good girls, straight masterpieces ♫ stylin, while in ♫ in a longer talk i canactually do some of that and i got myself a white fedora.
we will return to bruno later. why would i be up there? i turned 65 this year and i'm up there dancing like a fool in front of the 18 to 22 year olds because they had thepre-meds in there as well. think about 65, we'll return to that too. in 2009 the followers of tom ferguson, including jon lebkowsky,
formed the society forparticipatory medicine and they did this interesting thing. they said, "this medicalsociety cannot be run "by just a doctor ornurse the way most are. "it has to have a patient." they named my doctor and meas co-chairs of this society. this was not necessarily a brilliant thing to do logistically because to paraphrase a linefrom gone with the wind,
"i don't know nothing aboutworking no medical society." look how my doctor holdsthe computer screen, between us. emrs these days,electronic medical records, are widely known forhaving horrible usability. 800 clicks to order a cup ofcoffee, relatively speaking. people say, patients say, "the doctor, the nurseisn't looking at me. "they're dealing with thecomputer," and vice versa.
the doctor and nurse are saying, "i'm dealing with the computer." he puts it in the middle. you know what? sometimes he makes typos and he's not allowed tochange them afterwards once the note has been signed off. they have to add acorrection, what a mess. we work on it together.
there's a program called opennotes. when i say a program, i don'tmean a software program. a lot of hospitals including mine now are letting you see from home the doctor's actual visit notes, what they wrote in alltheir medical lingo. this one's designed, this program is a three year study funded by robert wood johnson.
it was created to answer the worry of, "well you know, if we letpatients see the medical record "aren't they going to swampus with stupid phone calls? "like, 'why did you call me an sob?' "no sir, that stands forshortness of breath." (laughing) it turns out the study demonstrated number one that didn't happen, number two, surprise, surprise,
patients did better at following the plan if they could look it up online. who knew? we have this mystique about medicine that makes us not doing medicine things that are common sense elsewhere. anyway, health leaders magazine which goes to hospital executives got wind of this
and they sent some reportersand talked to a bunch of us, and much to our amazementthey made it a cover story. they called it the patient of the future. now, important point here because i'm a cultural change agent but i don't just look atwhat i think is right. i listen to how is theestablishment hearing this? because that's one of our measures. if we had gotten a founding grant
and we had spent money on a pr firm and they had made this happen, it would have been, "dude, excellent. "you got us a cover story," but they didn't. this was the editors of health leaders saying to hospital executives, look in the circle here,"a new relationship." it's not about what doctorsand nurses do different
and what patients do different, it's about the changing relationship. now they sent a photographerto take pictures of some of us and i just figured it'd bethe usual black and white head face photo cut into a column of text. i would have worn a different shirt if i had known they'd do this. full page on the table of contents. you know i didn't have apublicist with me right?
think about this. what the editors ofhealth leaders were saying is that the patient of thefuture is a middle aged slump with a paunch lookingstuff up on the internet. in a tacky shirt, no less. when i'm at home it's likehaving an online meeting where -- nevermind, we won't get into that. anyway, every december they do 20 people who make healthcare better.
number one on the list that year was the phenomenal atul gawande, the surgeon who writesthese amazing lectures, columns in the new yorker andbooks on surgical checklists. number two was dean kamen. he's best known forinventing the segway scooter, but he was first honoredin medicine in 1976. did you know he invented thefirst wearable insulin pump? it was a backpack at the time.
this time, he was therebecause his company was making amazing roboticlimbs for amputees, wounded warriors, accidentvictims, and so on. imagine my shock when number three was me in that stupid shirt. what am i doing on thesame page with these guys? importantly, number four was danny sands, my primary physician andone of the 12 co-founders of that society.
what they were sayingwas that in their view, this revised patient-provider relationship belonged on the same page withatul gawande and dean kamen. again, this was still 2009. my life was spinning out of control. one of the mysterious thingsthat happened in that summer, i was fresh out of cancer andwe had a financial disaster in the housing marketcollapse in 2006 and 2007. the last thing i wanted to do was go off
and just pursue something justbecause my heart was in it. one of our colleagues,funders of the society was susannah fox who untilrecently worked at pew research, extraordinary woman. she now works at hhs. anyway, i had a call with herone august day where i said, "you know, i really want to pursue this, "but i can't afford to bewithout benefits and so on. "it would be great if icould get a half time job
"with full benefits." the next day the companyceo called me in and said, "you've been spending toomuch time in washington. "we're cutting your job in half "but don't worry, you'llstill have full benefits." woo, i can take a hint so i did it. i'm thinking, "am i anindicator of the future?" i've known plenty of people who have said, "man, i know i can just makea killing with this company,"
and they went out of business. i looked for evidence. i said, "who's getting online?" i've been online since 1989 on compuserve, 4way back when, when modems and pay by the hour and all that. susannah fox's research at pew said that 20 years later 83%of us adults were online. the people who say, "stopgoogling," well good luck.
for heaven's sake, couldyou please modernize? 6if we're not good at it, help us get better. that's what professionalsare supposed to do. that's just one data point. by that one marker, what this piece on the monopoly board did was an indicator of the future, but i looked for more.
i'd seen plenty ofpeople go out of business with just one data pointas their business case. i thought, "who's romancing online?" ladies and gentlemen, i foundmy wife on the internet. in 1999 i had ended adistance relationship with a woman in florida. i live in new england. when that ended, a mutual friend told me about match.com
which i'd never heard of, and within a few weeks ihad discovered virginia a mere 13 miles away from me. i was like, "dude, i'mgoing on a date in a car." a year later, i'm a data geek and i learned how to give speeches when i worked in marketing, i had to go give a speechin paris about data. we got hitched and made ahoneymoon in paris out of it.
10 years later, one ineight weddings in the us was people who met online. two years after that, it's onein five couples met online. what's possible for people tofind what they're looking for has changed because of the internet. people will commonly say,"be careful, patients. "there's garbage on the internet." i assure you if you've everbeen on eharmony or something, you'll know.
before i found ginny i went through some sub-optimal search results, but also i didn't marry thefirst one that popped up. all of us, when we're new at something, don't know what we're doing. the remedy is not to smackpeople down and say, "stop that." it's to develop their abilities. everybody when they were new, and you may most recentlyremember this as your grandmother,
had this moment whenthey were new to email, had this moment when they said, "holy cow, i'm relatedto a nigerian prince. "i'm going to be rich." this is important here because when i testified inwashington for patient access to the medical record, let me look at what's inthere for heaven's sake, a very well-meaning response was,
"but that stuff is complicated. "have you ever seen thelanguage they use in there? "people will get frightened," and so on. when my mother was 22 she had three kids and a traveling salesman husband who was never home and shedidn't know how to drive. cars in those days had areally stiff clutch on them and the culture was full ofjokes about women drivers always depicted as crumplingthe car's fender and so on.
it's a mistake to judge peoples' potential by what they do whenthey're new at something. the punchline is, andshort statistics today show that women have one-third fewer accidents than the men who used to make fun of them. think forward, don't getstuck in your habits. tom ferguson, summer of 1969. i was 19 years old. humanity landed on themoon for the first time.
some of you may recognize thisslide is from my ted talk. that was the first photoever taken of the earth from another surface. thee weeks later woodstock happened. what a wild time. in case you don't know, woodstock was the firstbig mega music festival. nobody had ever seen anything like it. that fall, the whole earthcatalog was published.
it was a hippy self-sufficiency journal. how to grow your own food, build your own house, not depend on the man, you know? live an independent life. that's me that summer. full bore hippy. don't ask what that foodis coming out of my mouth because i will not tell you.
i will note, by the way, that when i spoke in alaska in september at the allergists conference, alaska has full legalization of marijuana for recreational use. one of the presentations that day was on how one thingallergists need to be aware of is that while typicalrecreational dope back then had a thc content of 2% to 3% by weight,
the highest it's beinggrown commercially now that they've seen is 33%. if you can imagine stuff being11 to 15 times more potent, holy cow. anyway, a few years after this, tom ferguson came outof yale medical school and he never practiced medicine but he understood the vastmajority of what we all do is take care of ourselves.
i got a boo-boo on myfinger, i take care of it. i have various sprains and so on, but when trouble hits, the thing that primarilylimits our ability to accomplish something useful is access to information. when the internet came along, he saw that that changed what's possible. i'm talking in the 1980s,
before the internet was a public thing, he published a magazine and then a book called medical self care. you can tell a lot aboutfuturists like this by how their predictions pan out. there are a lot of peoplewho make predictions but consider something. 25 years later, tom was the medical editor of the whole earth catalog'smillennium edition.
jon lebkowsky, what did yousay you were in charge of? consciousness. the consciousness section. there we go. i like a book that has a wholechapter on consciousness. wow. anyway, look at these veryearly powerpoint slides that ferguson published. there was a version of this in this book.
this he said is industrial-age medicine where all the money stuffhappens at the top of the pyramid and self-care, that big red area there, is off the map. nobody knows what happens there, right? he said that with the internet it was going to get turned on its head to information-age healthcare and he predicted then thatthe individual self-care
at the top would have a next layer of friends and family self help networks which we are just reallyseeing blooming now. then professionals asfacilitators, partners, and then as authorities. he published these slidesin february of 1995, less than a year after thefirst mozilla browser came out. that's a visionary, if you can see what the longterm concepts of that are.
i say let's listen to whatthis guy was talking about. this is a number of his friends. just over his left elbowthere, left from our view, is danny sands, my primary physician. two slots to the right is jon lebkowsky. way over on the far left is a frenchman who lived in manhattannamed gilles frydman who now is in siliconvalley with his startup. he had started a list search,
a plain old emailing list when his wife hadmetastatic breast cancer, and he turned it into this network of cancer patient communities called acor. there's alan and cheryl greene who formed the first physician website recognized by the ama, drgreene.com, still in business today and on an on.
he coined this term "e-patient." originally the e stood for electronic like ecommerce and e-everything else, but he added these terms later: equipped, engaged, empowered, enabled. if you are an empowered patient, if you think for yourselfand speak up and so on, i bless you, you are an e-patient. there's no certificationtest, just be that way.
that's all it takes. it's common for physiciansand nurses who were trained that no such thing could possibly exist to think, "this just doesn't exist." our work as evangelistsis to spread the word in a way that builds partnerships. here's how this played out for me. i had never heard the term e-patient. i had moved away from the boston area
to the midwest for a few years. in 2006, i moved back and iwrote to dr. sands and said, "will you take me back?" he said yes and wescheduled an annual physical for the new year's week. i sent him an agenda email. some people say, "you sentyour doctor an agenda?" he's glad i did because he had things hewanted to go over also.
in what other area of life, visiting a lawyer or anaccountant or whatever, if you have an appointment with somebody you don't see very oftenwho's a valuable professional, do you spring the agendaon them when you show up? that just doesn't make sense. here's one of the itemsi was dealing with. as the appointment approached, i had a weird thinghappening in my right eye.
it was a sparkly, blurry thing. at first i thought i hadjust some goop in my eye and i tried to wipe itout and it wouldn't go. then it got bigger. i remember standing in mykitchen thinking, "what is this?" over the course of the nexthalf hour as it got bigger i could see it was kindof crescent shaped. if there are any mds in the audience or people who do diagnosis,
i'm sure your mind isthinking, "could it be this? "could it be that, what about that?" anyway, within a half hourit had outgrown the eye and it was gone. being a child of the 60s, my first thought was, "flashback." then when the exact same thing happened two weeks later, exact same thing, i thought, "what was that?"
the third time it happenedi started taking notes. the usual way to handlethis with your provider is you get into the office and start telling the story like that and the clock is ticking on the insurance governedminutes and all of that. i went online and i googled. i didn't know what i was googling for. i hunted for more than two hours thinking,
"no, it's not like this,it's not like this, "it's not like this." finally there was something odd. "it is like this," and ipasted it into my email. i pasted the picture in and i pasted in the url, same as you do when you want to say to somebody, "i found this, what do you think?" see, that's the partnership.
the colleague relationship. i gave some descriptions ofhow mine was slightly different and i pasted in mylittle diary of episodes just in case it might be useful and if he didn't care he wouldn'thave to spend time on it. people say, "patients shouldnot diagnose themselves "on the internet." i couldn't agree more. who am i to make a diagnosis?
have you ever seen, i know many of you have, the kinds of questionsyou have to answer right to get a medical license? holy cow. this was a website aboutophthalmic migraine. i pasted that in with a question mark. i wasn't trying to be the doctor, i was trying to do everything in my power
to communicate with my chosen expert. this is the partnership. by the time we got to the visit, we were way ahead of just saying, "this thing happened in my eye." another thing that was in the agenda was i had a stiff shoulder. it wasn't a sharp pain. it wasn't a big dealbut one of these things
where i was just getting crusty and instead of reaching upfor something on a shelf i'd rather do this. i said, "i'm probablygoing to need a referral "to a shoulder doctor." we actually did that beforethe appointment came. this is the point in the story where i have a completemulti-sensory recall of what happened.
one of my aphorisms in my book is, "patient is not a third person word," because when somethinglike this hits your family and it changes what life islike at your breakfast table, from that point on youdon't see the issues in the abstract anymore. i had the physical on december 30th. on january 2nd afterthe new year's weekend i went and had the shoulder x-rayed
with one of the bostonred sox team physicians. the next morning, i remember vividly, 9 am, i remember what the cubiclepartition carpet looked like, i remember what the sonydesk phone looked like. i don't know what the mechanism is by which the mind so perfectly recalls the moment when your life changes, but at the ted conference where i spoke
about 20% of the speakers were patients, much to my surprise mostof them in their speech named the date when they got this news. anyway, it was dr. sands calling and he said, "dave, yourshoulder's going to be fine "but there's something in your lung. "we need to find out what it is." that's a surprising thing to hear. i went in for a cat scan
and this is one of the fivetumors we found in both lungs. this one's the size of a golf ball. it raised this question. he said, "usually something like this "will break off from an abdominal organ "and circulate in the blood "and they get stuck in thelungs and starts growing." it raised the question,"where's this from?" which conveniently enoughabbreviates to wtf,
which is very much how i felt about then. my wife came with me. i had an abdominal ultrasound. she's a veterinarian. she knows i'm not a dog butshe's seen lots of ultrasounds. this is from a later mri. one of two primary tumorson the right kidney and the adrenal gland, it turnedout, was cancerous as well. they wouldn't give mea prognosis or anything
or even decide on treatment until they had a biopsy, whichis the correct thing to do, but we went home and welooked up kidney cancer. what did we see? at webmd, "almost allpatients are incurable." same as with match.com, i don't like the firstresult i keep looking. what do i get? "outlook is bleak.
"prognosis is grim." to the third page ofgoogle search results. i'm going into this, honestly it was prettyemotional and upsetting, i'm going into this ... for those of you whohaven't realized it yet, i want you to understandwhy some people will say, "please, what can i do to help?" this is a diagram ofstage iv kidney cancer
from the website of thedrug that i eventually got, high dose interleukin 2. totally by coincidence,there's that thing in my lung. i'm a poster child. the first pain i had was in my left femur. i had a bit metastasis in my left femur. in may of that year, i think, it landed on it and it broke. some people think empowered patients
are anti-doctor. are you kidding? i can stand on that leg now. i'm fixed, hallelujah. 8there's one in the skull, well that's in the brain. mine was in the cranium. i have a moth-eaten area at the back now. because i'm an overachiever,
i had these additional tumors everywhere, including if you look at the head again, three weeks before the treatment started i had a tumor erupt out of my tongue. i had a kidney cancertumor growing in my mouth. by the time i found the website, the doctors correctlywould not give me a number. they said, "there isn't enough good data "about patients like you."
the nurse practitioner who managed my case said she had just comefrom pediatric oncology and she had learned thatshe had to understand different patients'desires for information. some people are just,"i don't want to know. "just take care of me, fix me." that's fine with me. i never say everybody should be like me, but when somebody wants to get involved,
heavens, let's not smack them down. anyway, i found a website. she knew the first words out of my mouth, that i had an appetite for information. 24 weeks was my median survival. now, i knew enough aboutstatistics from college to know that didn't mean i wasgoing to be dead in 24 weeks, it's not they gave me 24 weeks to live, but that was an indicationof how sick i was.
an amazing thing happened. danny sands, remember danny sands? he knew gilles friedman who founded acor and he told me, "you're anonline kind of guy, dave. "you might want to join this community." this is important becausea lot of people think i went rogue and wentout and found something my hospital didn't know about. my doctor recommended thisas a known, good website.
to the extent that medical professionals can recommend good resources, the patients i know welcome that. consider in the firsttwo hours after i posted my first note in this community, the advice i got. the first thing they said was, "welcome to the club thatnobody wants to be in." serious.
"some of us make it, some of us don't." for me, the question thatwas burning in my mind that i could not get an answer for from the kidney cancer association, national institute of health, anywhere, was, "how likely is itthat i'm dying right now?" by scientific standards, there may not be anyvalidated answer to that, but to the patients,
they understand why i wanted to know that. here's one way to look at it. they said, "this diseasedoes not look good "but some people make it "and all you can do is be looking ahead." they said, "if your issue isyou don't want to die of cancer "consider that if you dieof something else first, "you didn't die of cancer." i swear to you, if you feel trapped,
the idea that there is a possibility, because then the gamebecomes just live long enough to get hit by a truck or have a heart attack or something else. the next thing beyond that is live long enough for anothertreatment to come along. nobody could get that publishedin a peer review journal. this is part of the mystery. how come that's actuallyuseful to patients?
i know a guy who wasdiagnosed the same month as me and over the years has gonethrough six different treatments and a year and a half ago finally was no evidence of disease. this is not just malarkey. anyway, here's what they said. it's an uncommon disease. find a hospital that does a lot of cases. there's not cure but thishigh dose interleukin 2
sometimes works. they said it usually doesn't, but when it does about halfthe time it's permanent. voila. the side effects are severe. they sometimes kill patients. that's why you got to getto a specialist hospital that does a lot of cases. don't let them give youanything else first,
and by the way here arefour doctors in your area who do it and their phone numbers. woo-hoo. to this day, none of this isin the medical literature. i didn't go rogue. i took this to my oncologistand said, "what do you think?" he said, "they're right." one of the core things thattom ferguson wrote about in his manifesto that he was working on
when he died in 2006, he got some funding fromrobert wood johnson to do this, was something called the lethal lag time. the time between when newknowledge comes into existence and it reaches clinicians. the patient communitydescribed it this way. they said, "cancer is measured "in five-year survival numbers. "that's fine, but the newestavailable information right now
"is from work that was done in 2000." you do an intervention in 2000, you wait five years, youmeasure the survival, it takes a couple years to get published. meanwhile, a center ofexcellence like my hospital is not standing still. they're creating the futurethat will be documented 10 years from now. for instance, and this is important stuff
because this goes to the coreof the scientific method. it challenges the assumptionsby which we practice medicine. the literature, the onlypaper at the time on this, said that 14% of patients respondto high dose interleukin 2 and 4% die of the side effects. an oncologist who doesn'tsee a lot of cases will look in the officialcancer database and say, "well, i'm not going to try that. "that's ridiculous.
"86% of people have no effect. "all it does is cost moneyand kill 4% of people." the patient communityknew that it was up to 20% and the center of excellencedid not lose many patients even though in that studyback in 1994 they had. i asked my oncologist and he said, "actually we're up to 25% respond now "because we're better atchoosing who to select for it "and we've lost two patientsout of our last 1,200."
really? isn't that interesting? anyway, long story short, surgery and interleukin worked. i had surgery for thebroken leg of course, but beyond that ... see, interleukin is one of the early immunological cancer treatments. they didn't have to countall the lesions in my body and go in and surgically remove them.
it's a systemic treatment. they removed the kidney and the interleukin wentboom to the rest of the body and everything else went away. my treatment started april 7th and ended july 23rd. i've had nothing sincethen and i'm all better. in fact, a year later mydoctor sent an email ... i had been losing weight rapidly
by the time the treatment started. they actually sent me a diet, how to increase your caloric intake. have pizza for snacks. put whip cream on desserts. he sent me an email a year later and said, "you have not expired butyour order to eat more has," because all my weight came back. that's what you can have
when you have that kind of a relationship. being a change agent, i'm wondering what'sthe establishment think? three years ago, the bmj,the british medical journal, one of the most respectedjournals in the world, asked me to submit an essay. you can imagine my surprise on that. i didn't just want togive them my perspective. they said, "we think whathappened to you is important
"and needs to be published." i knew this was goingto be read by clinicians around the world so i asked my oncologist, "what would you say to other oncologists "about what happened to me?" i didn't go interpreting things. anyway he said, "you were really sick. "i don't know if you couldhave tolerated enough medicine "if you hadn't been so well informed."
you know what that was about? that was about side effects. most of his patients don't survive. either the treatment doesn't work or the side effects cause themto discontinue the treatment. i thought, "okay, sideeffects might kill me. "where's my training? "how do i prepare for the side effects?" they didn't have anything.
now they do, they have a pamphlet on dealing with side effects. i turned to the literature. nothing. of course there's nopeer reviewed articles on the side effects ofhigh dose interleukin 2. it's obscure. i turned to the patient community and i got 17 firsthand stories,
so every side effect that hit me, there is no guaranteed out for it. i almost died. at one point i gotcapillary leak syndrome. the immune system drug caused the walls of my capillaries to open up, all the fluid went out, my blood pressure dropped to 50 over 30, my legs were like water balloons
and they discontinued the treatment. in my case, i'd had enoughand for me it worked. this is what he says. he since said that hewishes he could bottle whatever it was i did and administer it to other patients. who am i? don't argue with him. here's the question forthe scientific mind.
how can it be that themost relevant information can possibly exist outside of where we were rigorously trained to look? how can that be? well, it turns out there's a real answer that can satisfy theengineering or scientific mind. this is a nice cutesydiagram about social media. ooh, we're all connected. six degrees with kevinbacon and all that stuff.
it turns out there'sa valid metaphor here. information in medicineis like a nutrient and ... you've got to be kidding. i just found out i have five minutes left. the information is like a nutrient that enables a healthierresponse where it's present and these dotted lines areexactly like capillaries. they are the pathways throughwhich information can travel to the point where it's needed.
this is the medicalschool in the netherlands that i mentioned where i did my ted talk, has been working on thisconceptual diagram for five years. it used to be truly, no kidding, that all knowledge andassets and everything was concentrated above thehorizon in the institution and necessarily transmittedto a lower level. the current generation,my case and others, occasionally e-patients bringinformation to the table
which improves what's possible and the future worldthat we're moving into, that is happening now, health 3.0, 4.0, and beyond, we're all swimming in acommon pond of information. i'm still not an oncologist. i'm not even a physicaltherapist for heaven's sake, but what i'm capableof bringing to the case is different than it was 50 years ago.
this is tom ferguson'samazing breakthrough. now we understand that the mechanism here is all of these different players. all have their ownnetworks of capillaries. if you're into it, informationtheory, information science, you'll recognize thatthis is the transformation from a closed system to an open network. it makes new things possible. to deny this is to be operating,
it's almost as if somebodyin another industry was operating in a pre-internet world. same sort of situation. now there's an objection. there's garbage on the internet. well, indeed. we've discussed that. one of jon lebkowsky's friends, this great guy, howard rheingold,
5spoke at the medicine x conference at stanford this fall and he warned about this. there's crap on the internet. we all want reliable information, right? what do we assume about where to get it and what to avoid is the real question. the scientific literature? well, not according to the editors.
get ready for a teeny shock here. richard smith, 25 year editorof the british medical journal said," most of what appears in journals "is scientifically weak." he has a reputation for havingsomething of a bad attitude after 25 years of doing this. now we hop across the pondto the new england journal where marcia angell said,"it's simply no longer possible "to believe much of the clinical research
"that appears in journals." what? that was a few years ago and she retired. of course things must havegotten better since then, right? here's richard horton ofthe lancet this year saying, "much of the literature, perhaps half, "may simply be untrue." this is an enormous disservice to clinicians as well as patients.
it took a full generation to switch to evidence-based medicine and now we're telling them half of it just might be garbage. remember when watsonkicked butt on jeopardy? it can read a gazillion pages a second, read the whole internet every day, something like that. i actually asked one ofwatson's programmers this
at medicine x, i said, "how would you program watson differently "if you had to tell it thathalf of everything it reads "is wrong?" in fact, the current watson for health, they are no longerdepending on the literature. they turned it into a different kind of cognitive thinking machine. amazing.
i could go on about that. i said, "maybe we need the crap detector "for the medical literature." wouldn't that be interesting? by the way, howard was there. i was there, i got himto autograph my copy of the whole earth catalog. that made me happy. you know a movement is a social revolution
when the artists and musicians show up. this is important because ithink we are going to start hearing folk songs andmaybe even protest songs in this movement. a funny early version of itthat ended up in my ted talk is there's a health it guyoutside boston named keith boone who wrote the e-patient rap. i want to be an e-patient just like dave. meanwhile there's thisfour minute rock video,
this it guy ross martin has a garage band and he wrote this song. it's a parody of blue suede shoes. (clapping) one for thedoctor, two for the nurse, they say they're trying to treat me so they make me feel worse. give me my dam data, bum, bum. patient access to the medical record. then he did e-patient dave's phr.
it's a parody of alice's restaurant. anyway, this is regina holliday. if you have a chance toget her to come speak, i seriously recommend it. she painted this jacket. this is the phone call where she met me while her husband was dying of my disease. this was a 60-foot mural onthe side of a gas station that she was painting after his death.
she is an activist and she is determined to fix healthcare. this subset of that mural ... she and her husband hadbeen to three bad hospitals in washington dc, horror stories along the way, and then a mutual friend bumped into her and discovered that her husband was dying, and she said, "kidney cancer.
"oh no, you've got totalk to e-patient dave." she said basically, "iknow a guy on twitter." on that phone call, shewas cooking macaroni. they were a poor family in washington dc. them and two young sons living in a one bedroom apartment. she was cooking macaroni and cheese. her son was clinging to her leg and she was talking to me.
the next day she was talkingto my oncologist in boston. when he saw the scans he said, "sometimes it's too late." she has turned her lossinto this activism. she paints murals and she now has 350 of these jackets that she has created. she calls it the walkinggallery of healthcare. her deal is this: shedoesn't sell these jackets.
you tell her your medicalstory, good or bad, and send her a jacket and she will paint it for free as long as you will promise to wear it at medical conferences because they start conversations. i walk through anairport or any place else and people say, "oh, what's that?" how's that for an activist?
a citizen activist saying,"this shall change." there she is with the other regina, surgeon general regina benjamin. she got some attention there, huh? on forbes last year, will regina holliday becomehealth care's rosa parks? i'm seriously talking about a movement that started here inaustin with tom ferguson. i want to quickly touch on this,
the essence of paternalistic caring. this is important because there are times when somebody needs to be taken care of. that essence is, "no, no, no, sorry. "you don't know what you need. "i'll take care of you,i'll decide that for you." this is my granddaughter, thank you. i had this epiphany whenshe was born two years ago. everybody talks aboutpaternalism as a bad thing,
but i realized -- here she is in her car seat in the car. when she goes for a ride in the car, she's put in a rear-facingcar seat in the back seat and she's taken where she needs to go. she has no capacity tounderstand what the issues are. this is appropriate in that situation. she's now two and a half and she has discovered themagic two year old word, "no."
she has opinions. last time we went out to dinner, as we were heading towardthe garage she stopped us and said, "no papa, vroom, vroom," which is her word for car. "mom vroom, vroom." we're going to go in mom's car. within a few years she'll besaying where she wants to go. sooner or later she will become a driver.
some of the people her age will get killed as young drivers. it is our charter, our responsibility here is to understand as peoples' capacity to understand things changes, how do we alter how we interact with them? great definition of empowerment here. as people in nursing, you've got a lot of one to one contact.
this is just great. wait until you hear where this came from. i got this from a patient, of course, speaking at a medical conference. empowerment is increasing the capacity of individuals or groups to make choices about they want, their capacity, and to transform those choicesinto actions and outcomes. somebody who can't do thatis powerless in the world.
this is the definition the world bank uses when they go into a developing nation and people there don't knowhow to govern themselves, don't know how to conductbusiness and so on. they get to work on increasingthe capacity of people to make choices and take effective action. this is the work of empowering patients who are not yet activated, don't realize how theycan help run their lives.
the institute of medicine, in case you think this isall anti-establishment, published this report in 2012 where they said we need alearning healthcare system and number two of the four pillars was patient-clinician partnerships with engaged, empowered patients. how about that? the institute of medicinesays partnerships
guess what? i bet hardly anybody here in this room knew that that has beendeclared three years ago because information doesn'tautomatically go out and reach everybody's brain. it takes time. it's the work of activism. now another objection, and here's where it gets alittle bit fun and annoying
at the same time, i commonly hear, "well okay, that's okay for you. "you're an mit graduate,"and blah, blah, blah. "my patients aren't like that. "they're not asking for this." a hundred years ago on election day, this flyer was circulated. national associationopposed to woman's suffrage.
we should not give women the vote. why? number one on the list, because 90% of women aren't asking for it. really? exactly like, "well, my patientsaren't asking for this." has anybody ever sat downand explained to them why they might want to or what they would do with it and so on?
i love when cognitive distance sets in. something is happeningpeople can't believe, the mind goes crazy. look at what they came up with next. 80% of women eligible to vote are married so they can only duplicate orcancel their husband's vote so why bother? (laughing)what? what are you thinking about?
down at the bottom, "it'sunwise to risk the good "we already have for theevil which may occur." did anybody here see the45 vintage sexist ads they run around on facebooka couple years ago? the 45 vintage sexist ads that would not go down so well today. some of them are too risque to show, but i'll show you just a couple. these are from withinmy lifetime, mind you.
we're not talking about archaic stuff. at least not archaic to me. anyway, how about this. "show her it's a man's world." the guy gets dressed for work and gets back in bed so his wife can kneel in her robe and lift up the breakfast to him. van heusen man's world.
here's another one. this is from 1963. i recognize the typesetting. "it's nice to have agirl around the house. gasps. notice the company. this is from leggs, the pantyhose company. they had men's pantsthey were trying out now. i know you can't read thefine print but i'll read it.
"though she was a tiger lady, "our hero didn't have tofire a shot to floor her. "after one look at his pants, "she was ready to havehim walk all over her." really?(laughing) then look at the lookon her face, no less. this is how you sell pants to men. finally, the one that echoesmy testimony in washington, although i didn't know it at the time.
"sooner or later, yourwife will drive home "one of the best reasons to own a vw." it's the crumpled fender and the body copy says, "women are soft and gentle,but they hit things." when she brings home a crumpled fender on a vw it's cheap. it only costs $25. $24.95 plus labor.
when people say, "culture change is hard. "i don't want to have to change culture." i assure you, it ispossible to change culture when enough people say, "enough of this. "this is not going to happen anymore." to come close to wrapping up. important to know, googling isa sign of patient engagement. the only reason anybody evergoes googling about a symptom is because they want to knowmore than they already do.
if they are not good at it, we should encourage it. a sign that our movementis getting attention is that the empire isstarting to strike back. what i'm about to tell you is true. the belgian government isspending taxpayer money on a google ad campaign saying, "don't google it." not only are they spending money on that,
but they had two excellentprofessionally produced videos with this little vignette here. husband has an owie on his finger. wife bandages it up, but then she goes on the internet and she starts getting scared. you notice he has lumps comingout of his forehead now? she said, "oh, i foundsomebody who's online "who said when this happenedthey had this and that happen."
(cell phone ringing) i will wait for the phone to stop. within one minute of the commercial he's got lumps coming out of his face and he's bleeding to death. the ad at the end says, "don't google it. "consult a professional." this is tied in with that coffee mug post, "don't confuse your google search."
it takes something, though, to articulate what'sexactly wrong with that. what i said was, "googling itand consulting a professional "are not mutually exclusive." i would say, "learn what you can." meanwhile evidence grows that the current paradigm is collapsing, but of course learn what you can but still consult somebodywho knows what they're doing.
sad story this year. this 19 year old died in the uk. she had liver cancer and it was cured and she started feeling sick again but they said thiscancer doesn't come back. she and her mom saw stuff online that said it does come back and the doctor said, "stop googling," and she died.
this summer they apologizedfor their role in her death. there is a real penalty to being significantly out of date with your understandingof how things work. the first generation of e-patients, tom ferguson in the bmj in 2004 said, "the emerging world of the e-patient "cannot be fully understoodand appreciated." regarding old people ...
we're going to wrap up then. lygeia ricciardi who used to be what she called the consumerista at the health and humanservices department just tweeted this earlier this month. "it's a misperception that older people "don't want to use technology. "you just got to make it fit their needs." speaking of that, haveyou noticed there are
a lot more old people? do you know why that is? getting off airplanes, all of a sudden now sometimes there's five or six wheelchairs there. it's because y'all saved us from dying. i tried to die in my 50s but you saved me. here's my college classmate, jay. he said on facebook a couple years ago
he's having a pacemaker put in. the reason he's having a pacemaker put in is because twice in the previous 10 years medicine saved him from dying. he's the first man in hisfamily to live to age 65. woo-hoo! the result, pew research publishedthese incredible diagrams earlier this year. they took the censusdata and turned them into
what i call these beehive diagrams. five year bands. the dark bands are baby boomers. 1950 is when i was born. this is what the populationpyramid looked like. here it is today. you will notice people tend not to be dropping out and dying. instead they're getting old.
we got a lot more peopleproportionally over age 65. one generation from now when i turn 100, which i am planning to do, this is what it will look like. the right side of each one is women. the left side is men. notice in 2050 that top bar, the right side is women 85 and older. it's 3% of the us population.
can you imagine one person in 30 being an 85 year old woman or older? boy, oh boy, oh boy. one thing i bet you'll see is that wheelchairs will no longer look like they were stolen from a hospital. they'll start to looklike high tech strollers 1with drink carriers and all kinds of appendages.
why not? it's ridiculous. my wife had both herknees replaced this summer and the wheelchairs, why don't they have atray with an ipad holder and things like that? anyway, even bruno mars will get old if he lives long enough. watch this.
♫ 'cause uptown funk goin' give it to you ♫ saturday night and we in the spot ♫ don't believe me, just watch ♫ that's it. boy, has the world changed. new things are possible, truly. reality has changed and culture is changing. i say game on.
let patients help heal healthcare. tom ferguson titled his manifesto that his friends finished after his death e-patients, how they canhelp us heal healthcare. it's available not just in english but now in spanish as well. what did i hear somebody say around here? what starts in austin changes the world. i'd say that's true.
we are a catalyst for change. we're driven to solve society's issues. thank you for the work you do. we got started late and i talked longerthan i was supposed to, but i'm happy to keep on can you answer a few questions? absolutely. at this time, ifanyone has any questions
please raise your handand we'll try and ... dave, i first met you in 2008 at your first harvard quality colloquium. oh my god. you showed gettingto walk your daughter down the aisle and it was areally exciting thing for us. atul gawande also was justgetting started then too. you were both there. i wanted to really thankyou for coming to texas
and being here with us today. thank all of you somuch in broad day here. one of the questions i'mgoing to ask you is that since that time, since 2008, we see a lot more ofthe patient and family advisory councils. i know the agency forhealthcare research and quality has a booklet out now about how to really formthose toolkit stuff.
are you involved in that in any way or do you promote theconcept of patient and family advisory councils in doctors'offices and hospitals and other places? it's a great question. i'm not personally involved but i've talked to alot of people who are. it's really hard to get started sometimes because nobody knows howto do this new dance.
in college we shifted fromboy leads, girl follows to stepping on each other's feet and then eventually becoming graceful. sometimes it takes off great but very often it startsout with a hospital saying, "well, all right we'll bring them in, "we'll give them milk and cookies "and show them what we're working on." this is very analogousto the famous thing about
you lay out a sidewalk but then the citizens come along and they just cut across the lawn because what they wanted isnot what you had designed. it takes an awakening. you've got to coach people and say, "no. "if you could have anythingreally what would it be?" that can take some timebut it's really noble work. another slide in thatinstitute of medicine report
that i didn't show, they said the learninghealthcare system is anchored on patient needs and perspectives. that's challenging. it's not, "here's what we're working on. "what do you think?" if you start with whatpatients find valuable. here's an example. i spoke this week at theradiology conference in chicago
and preparing for that i thought that in our society for participatory medicine a few years ago there was a famous blogger who had her first mri. how many people here haveever had an mri themselves? do you remember whatthat first one was like? they never give you any warning that this is going to be like monkeys banging on garbage canswhile you're claustrophobic.
she said, this put her into ptsd, we started a hashtag thatnever really went anywhere, why don't they have astupid youtube that says, "this is what it's going to belike to be in that machine"? before the technician puts you in there, why don't they say, "haveyou done the training?" if you start from thepatient's perspective, and that costs nothingcompared to the cost those machines, right?
that's the thing. teach everybody to think from, and by the way never,ever, ever let anybody say, "well, we're all goingto be patients some day." no, no, no, no. some patients get almostviolent when they hear that. until you are the one whois either scared to death for themselves or a family member or you're the one who is suffering
from being woken up sixtimes through the night for various blood tests and so on, until you know what that's like, you have no right to say, "we'llall be patients some day." patient and family advisorycouncils are a good thing but can take some doingto get people to say what they really want. people tend to assumethat if it were possible to do what they want,
somebody would have done it. somebody else? there's another one in the back. information is really useful. as a medical professional i believe that. this information cancertainly be challenging when people come in with, say the vaccine issue, when parents come in,
they go to dr. google, dr. google says, "vaccines cancause autism in your child," and to overcome that isa difficult conversation when you have a bunch of bloggers bloggingthat kind of information.what is your advice fora healthcare professional to try to tell the patient whattrue medical information is and what medical information is not? that's a great question because the core fundamentalprinciple question there is what information is reliable?
the same as howard'sneed for a crap detector on the medical literature. did you know that something like half of all clinical trials, maybe it's a third of all clinical trials that are registered with the fda, the results never get reported? ben goldacher, a doctor in the uk, says this is a cancer at the core
of evidence-based medicine. what happens is a lot of studies where the results are not favorable, they just suppress the evidence. pure scientific corruptionand it's a real problem. first of all, there's a discussion on that coffee mug blog post on e-patients.net today, a debate between doctorswho are pro-googling
and anti-googling. there's a lot of goodthinking to tune into there. susannah fox, that sameresearcher when that happened said a few years ago, "hang on. "the smoking gun on thevaccine autism problem "was in the top tier medical journal. "they didn't notice thatthe data had been forged." then the anti-vaccine people said, "i'm pointing to a top tierpeer reviewed medical journal."
as i say, the core issue ishow can we know what's certain? everybody needs to learn, everybody, that we as patients step into the ring to participate in this discussion. we're responsible for wising up. if providers want to welcome them, they've got to be responsible for doing the coaching as well. it's not trivial, it's a valid point.
on the other hand, what really bugs me, really bugs me is when some physicians, a minority, but some, get arrogant and say, "i'm theone with the medical degree. "stop googling." we need to be in it together,including the uncertainty. not comfortable, is it? that's a time of change. we have one more over here.
dave, thanks for what you are doing. as a patient, there's acouple of parallel systems. there's the traditional system, what's taught in the medical schools, and then as a patient, obviously you consultthe patient community and you'll find chinese medicine and you'll find functional medicine and you'll find alternatives,
you'll find complementary medicines, you'll find botanicals, you'll find all these different things. there's a dilemma on how tointegrate all this stuff, what's legit, what isn't. it's really super complicated. is there any rules of thumbthat you have about integration of the parallel systems for the patient? i don't know about integration.
again, i think the coreissue is how do you decide what's reliable? there's a big debate forthe last couple of years in the md world onmaintenance of certification. specialists having to get re-certified. i don't know all the issues there but i will point to ... first of all, after one ofmy speeches a few years ago a doctor came up to me and said
regarding evidence-based medine he said contemptfully, "idon't want to have to practice "medicine out of some damn cookbook. "i want the autonomy topractice as i see fit." he didn't care about theevidence, literally, explicitly. some people have told me theywere trained decades ago, that they were basicallyready to be a doctor and go out and have a good life. in one of the maintenanceof certification debates
on the blog of a well knowdoctor named bob wachter, one doctor said, "i waslicensed to practice medicine "38 years ago. "how dare you suggest idon't know what i'm doing?" lots of stories of patients saying that their doctor recommended specifically obsolete information. there is no easy answer. i will tell you that inmy patient community,
one of our challenges is i wish there were a community this good for every condition, including the toenail problems. every six months or so some idiot shows up there because the door is always open and says, "hey, have youheard about laetrile? "it'll cure cancer in an instant." the community stomps onthem and kicks them out
because the wisdom nowlives in the community. there are cultures around the world where the neighborhood cultureis what really runs things. no easy answer. did you have a follow-up question? no, i was just saying thanks. good. are we finished?
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