e-Patient Dave IKF March 23 2013
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e-Patient Dave IKF March 23 2013

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    e-Patient Dave IKF March 23 2013 e-Patient Dave IKF March 23 2013 Presentation Transcript

    • JAMIA, 1997 e-Patients Can Help Improve Healthcare “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave© e-Patient Dave© e-Patient Dave dave@epatientdave.com Skype: ePatientDaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • How I came to be here •  High tech marketing •  Data geek; tech trends; automation •  2007: Cancer discover & recovery •  2008: E-Patient blogger •  2009: Participatory Medicine, Public Speaker •  2010: full time© e-Patient Dave •  2011: internationalRe-use is permitted with this notice © e-Patient Dave Re-use is permitted with this notice
    • “I want to note especially the importance of the resource that is most often under- utilized in our information systems – our patients” Charles Safran MD, Beth Israel Deaconess quoting his colleague,Warner Slack MD Testimony to the House Ways & Means subcommittee on health, 2004© e-Patient DaveRe-use is permitted with this notice
    • Foundation Principles •  Patient is not a third person word –  Your time will come –  It’s a collective noun. •  Patients are the ultimate stakeholder –  Yet they’re often omitted from planning the future •  A pivotal force:The urge to care for our children and elders© e-Patient DaveRe-use is permitted with this notice
    • Doc Tom said, e-Patients.net founder “e-Patients are Equipped Tom Ferguson MD Engaged 1944-2006 Empowered© e-Patient DaveRe-use is permitted with this notice Enabled”
    • JAMIA, 1997© e-Patient DaveRe-use is permitted with this notice
    • Pt of future© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • Me? An indicator •  Who’s getting online: –  1989: Me (CompuServe sysop) of the future?? –  2009: 83% of US adults (Pew) •  Who’s romancing online: –  1999: I met my wife (Match.com) –  2009: One in eight weddings in the U.S. met online –  2011: One in five couples met online© e-Patient DaveRe-use is permitted with this notice
    • The Engaged Patient 12 items in my pre-appointment “agenda” email© e-Patient DaveRe-use is permitted with this notice
    • The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 “Your  shoulder      will  be  fine  …      but  there’s        something        in  your  lung”  © e-Patient DaveRe-use is permitted with this notice
    • Multiple tumors in both lungs Where’s This From??© e-Patient DaveRe-use is permitted with this notice
    • Primary Tumor: Kidney© e-Patient DaveRe-use is permitted with this notice
    • E-Patient Activity 1: Researching my condition© e-Patient DaveRe-use is permitted with this notice
    • Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival:© e-Patient Dave 24 weeksRe-use is permitted with this notice
    • Facing the Reaper© e-Patient DaveRe-use is permitted with this notice
    • My mother© e-Patient DaveRe-use is permitted with this notice
    • My daughter© e-Patient DaveRe-use is permitted with this notice
    • After the shock you’re left with the question: What are my options? What can I do?© e-Patient DaveRe-use is permitted with this notice
    • Get engaged. Get it in gear. Do everything you can.© e-Patient DaveRe-use is permitted with this notice
    • E-Patient Activity 2: “My doctor prescribed ACOR” (Community of my patient peers)© e-Patient DaveRe-use is permitted with this notice
    • ACOR members told me: •  This is an uncommon disease – get to a hospital that does a lot of cases •  There’s no cure, but HDIL-2 sometimes works. –  When it does, about half the time it’s permanent –  The side effects are severe. •  Don’t let them give you anything else first •  Here are four doctors in your area who do it –  And one of them was at my hospital© e-Patient DaveRe-use is permitted with this notice
    • E-Patient Activity 3: Reading (and sharing) my hospital data online© e-Patient DaveRe-use is permitted with this notice
    • E-Patient Activity 4: My own social support network (CaringBridge.org - family and friends - journal & guestbook)© e-Patient DaveRe-use is permitted with this notice
    • E-Patient Activity 5: Tracking my data© e-Patient DaveRe-use is permitted with this notice
    • Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm© e-Patient DaveRe-use is permitted with this notice
    • Nice curve!© e-Patient DaveRe-use is permitted with this notice
    • Question:© e-Patient DaveRe-use is permitted with this notice
    • How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?© e-Patient DaveRe-use is permitted with this notice
    • Dr. Lindberg: 400 years “If I read two journal articles every night, at the end of a year I’d be 400 years behind.” It’s not humanly possible to keep up.© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • The lethal lag time: 2-5 years The time it takes after successful research is completed before publication is completed and the article’s been read. During this time, people who might have benefitted can die. Patients have all the time in the world to look for such things.© e-Patient DaveRe-use is permitted with this notice
    • Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)© e-Patient DaveRe-use is permitted with this notice
    • Death by Googling: Not. (Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search) Compare with - “To Err is Human” (98,000 deaths/yr Nov 1999)© e-Patient DaveRe-use is permitted with this notice
    • “It may be more dangerous not to google “your condition.”© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • What if his family had googled “splenectomy”?© e-Patient DaveRe-use is permitted with this notice
    • What if the care team had shared the care plan?© e-Patient DaveRe-use is permitted with this notice
    • Abington Memorial created one. (It’s just an EMR report)© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • Seven Preliminary Conclusions (in Chapter 2) 1.  e-Patients have become valuable healthcare resources and providers should recognize them as such 2.  The art of empowering patients is trickier than we had thought 3.  We have underestimated patients’ ability to provide useful online resources 4.  We have overestimated the hazards of imperfect online health information 5.  Whenever possible, healthcare should take place on the patient’s turf. 6.  Clinicians can no longer go it alone 7.  The most effective way to improve healthcare is to make it more collaborative© e-Patient DaveRe-use is permitted with this notice
    • “These conclusions are no more anti-doctor or anti-medicine than Copernicus and Galileo ..were anti-astronomer.” Patients can simply contribute more today than in the past.© e-Patient DaveRe-use is permitted with this notice
    • E-Patient White Paper© e-Patient DaveRe-use is permitted with this notice
    • And finally: recognition from the establishment© e-Patient DaveRe-use is permitted with this notice
    • Institute of Medicine – Sept 2012 Major New Report: “Best Care at Lower Cost”© e-Patient DaveRe-use is permitted with this notice
    • Yes, the IOM itself says e-patients are an essential part of tomorrow’s healthcare. Patient-Clinician Partnerships Engaged, empowered patients— A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning© e-Patient DaveRe-use is permitted with this notice care team.
    • JAMIA, 1997© e-Patient DaveRe-use is permitted with this notice
    • “How can patients participate if they can’t see what I see?” – Dr. Danny Sands© e-Patient DaveRe-use is permitted with this notice
    • Lesson learned: People perform better when they’re informed better.© e-Patient DaveRe-use is permitted with this notice
    • Corollary: It’s perverse to keep people in the dark and call them ignorant© e-Patient DaveRe-use is permitted with this notice
    • VA’s “Blue Button” 1 million 2012: (and DoD & Medicare) + Automatic!© e-Patient DaveRe-use is permitted with this notice
    • Informed Medical Decision Making© e-Patient DaveRe-use is permitted with this notice
    • The Dartmouth Atlas of Practice Variation Prostate treatment rates, by region Trans-urethral resection Radical prostatectomy© e-Patient DaveRe-use is permitted with this notice
    • Remedy: Shared Decision Making (SDM)© e-Patient DaveRe-use is permitted with this notice
    • Informed Consent© e-Patient DaveRe-use is permitted with this notice
    • Informed Choice© e-Patient DaveRe-use is permitted with this notice
    • Problem: Patients may not find value in all the technical details© e-Patient DaveRe-use is permitted with this notice
    • (In other words, to them, the discussion wasn’t patient centered)© e-Patient DaveRe-use is permitted with this notice
    • “Ultimately, it turned out to be the trade-off between peeing better and sex.”© e-Patient DaveRe-use is permitted with this notice
    • “And when it was stated in those terms, SDM flowed into the conversation.”© e-Patient DaveRe-use is permitted with this notice
    • BREAK© e-Patient DaveRe-use is permitted with this notice
    • 2.8 e-Patient Years in Pictures… December 2006 October 2007 May 2009© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • © e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • You know it’s a revolution when…© e-Patient DaveRe-use is permitted with this notice
    • How a kidney cancer wife found the info she needed •  No insurance; no treatment. Then: •  Three bad hospitals; no help. Then: •  A friend said “I know a guy... on Twitter”© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • The Walking Gallery ReginaHolliday.blogspot.com Regina Holliday’s Medical Mural Advocacy Project© e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • Information makes a difference.© e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • © e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • “Data Liberación” Todd Park Innovator Entrepreneur HHS Chief Tech Officer US Chief Tech Officer© e-Patient DaveRe-use is permitted with this notice
    • Case Study #3: Hugo Campos wants his ICD data© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • Doctor Experience Full, unrestricted & convenient access.© e-Patient DaveRe-use is permitted with this notice
    • Patient Experience© e-Patient DaveRe-use is permitted with this notice
    • Activity $99 Fitbit© e-Patient DaveRe-use is permitted with this notice
    • Blood Pressure $129 Withings BP Monitor© e-Patient DaveRe-use is permitted with this notice
    • Weight $159 Withings WiFi Scale© e-Patient DaveRe-use is permitted with this notice
    • Sleep $149 Zeo Sleep Manager© e-Patient DaveRe-use is permitted with this notice
    • Implanted Cardiac Defibrillator $30,000 No data© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • Raw data© e-Patient DaveRe-use is permitted with this notice
    • A patient to her doctor: (Rhode Island Quality Institute) “You make me sign a consent form to SHARE my data. You ought to ask my consent to HOARD it.”© e-Patient DaveRe-use is permitted with this notice
    • Objection: “My patients aren’t like that.” “They aren’t asking for this.”© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • Web 2.0: “When the web began to harness the intelligence of its users.” – Tim O’Reilly© e-Patient DaveRe-use is permitted with this notice
    • Disempowered: Shrugs; “There’s nothin’ I can do…”© e-Patient DaveRe-use is permitted with this notice
    • Empowered: Self-aware – you know what you want Willing & able to© e-Patient Dave act on itRe-use is permitted with this notice
    • Engaged: Thinking; learning; acting; interacting© e-Patient DaveRe-use is permitted with this notice
    • Disengaged: Passive; receiving. A car in a car wash.© e-Patient DaveRe-use is permitted with this notice
    • How to start? Here’s the magic incantation© e-Patient DaveRe-use is permitted with this notice
    • “I’m the kind of patient who likes to understand as much as I can about my health.”© e-Patient DaveRe-use is permitted with this notice
    • “Could I ask some questions?”© e-Patient DaveRe-use is permitted with this notice
    • Obstacle to adoption: “Patients will flood us with time-wasting questions.”© e-Patient DaveRe-use is permitted with this notice
    • OpenNotes What happens when patients see their doctors’ notes?© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • Announced this past Monday© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • •  99% of patients wanted to continue •  17-26% of docs preferred not to… – But when given the chance to stop, none did •  85-89% of patients said availability of  open notes would influence their choice of providers and health plans © e-Patient DaveRe-use is permitted with this notice
    • Obstacle to adoption: “But patients don’t understand this stuff.”© e-Patient DaveRe-use is permitted with this notice
    • If the data’s unclear let’s MAKE it clear Like other industries do.© e-Patient DaveRe-use is permitted with this notice
    • Thomas Goetz, Wired© e-Patient DaveRe-use is permitted with this notice
    • Thomas Goetz, Wired “It’s time to redesign medical data”© e-Patient DaveRe-use is permitted with this notice
    • Same data – better software. Information: clearer. Consumer: informed, enabled.© e-Patient DaveRe-use is permitted with this notice
    • Psoas muscle (My kidney tumor was encroaching on it) my rendering on VisibleBody.com© e-Patient DaveRe-use is permitted with this notice
    • Why not “Google Earth for my body”?© e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • Really?© e-Patient DaveRe-use is permitted with this notice
    • OsiriX© e-Patient DaveRe-use is permitted with this notice
    • VeHU: Have you looked in your medical record? Do you know if it has mistakes?© e-Patient DaveRe-use is permitted with this notice
    • Dr. Eric Topol© e-Patient DaveRe-use is permitted with this notice
    • iPhone EKG?? 12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order”© e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • Who owns the data? My view (on CafePress.com)© e-Patient DaveRe-use is permitted with this notice
    • A patient to Laura Adams: (Rhode Island Quality Institute) “You make me sign a consent form to SHARE my data. You oughta ask my consent to HOARD it.”© e-Patient DaveRe-use is permitted with this notice
    • Health on the Internet: Separating the Gold from the Garbage© e-Patient DaveRe-use is permitted with this notice
    • Nov. 2007: This googling patient was a nightmare (Title should have been “When the patient is a yahoo”!)© e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • o Feb. 2010: Sites like ACOR & PatientsLikeMe: patients are creating value by connecting© e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • Jan. 2011: Googling patient helps doc find correct diagnosis more quickly© e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • http:// bit .ly / gold from garbage© e-Patient DaveRe-use is permitted with this notice
    • House addressing his residents: “OK, so you’re out of ideas! So??” “You think the stuff you learned four years ago is all there is??” “You think nothing new has come up since then??” “I know you’re busy. Have you asked the family if they can dig anything up?”© e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • “Shift Index” “We are shifting from a world where the key source of strategic advantage was in protecting and extracting value from a given set of knowledge stocks ...© e-Patient DaveRe-use is permitted with this notice
    • “Shift Index” “...into a world in which the focus of value creation is effective participation in knowledge flows.” –Thomas Friedman Pulitzer prize winner (3x) New York Times January 19, 2010© e-Patient DaveRe-use is permitted with this notice
    • “The Power of Pull” “Looking for things without a defined path and without knowing what they are”© e-Patient DaveRe-use is permitted with this notice
    • Britannica vs. Wikipedia© e-Patient DaveRe-use is permitted with this notice
    • Physician adoption of newpractices years after discovery Flu vaccine, year 32:The “17 years” thing 55% doing it, 45% still notFrom A. Balas, Institute of Medicine, in Yearbook of Medical Informatics 2000 Beta blockers, year 18: 62% doing it, 38% still not Cholesterol, year 16: 65% doing it, 35% still not Diabetic foot care, year 7: 20% doing it, 80% still not© e-Patient Dave Creative Commons Attribution / Share-AlikeRe-use is permitted with this notice May be distributed with this license included
    • © e-Patient DaveRe-use is permitted with this notice
    • Overheard: “You’re crazy if you don’t. check Wikipedia, and you’re a fool .if you stop there.”© e-Patient DaveRe-use is permitted with this notice
    • Watson remembers everything it’s read© e-Patient DaveRe-use is permitted with this notice
    • What if medical problem solving were suddenly an open book test where all the relevant facts were gathered and handed to you (including this week’s news) so you could spend your energy thinking?© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • “May Require Refrigeration” cushings365.posterous.com, 9 / 17 / 10 •  “Panic!  For the first time, I got a note on my florinef that it might (MIGHT?) need to be refrigerated.  •  I didnt know that.  Should I have been doing that all along?  •  No one told me.” •  “I called the pharmacy.  •  They read what is on the printout which comes with the drug.  I had already read that. It wasnt helpful.”© e-Patient DaveRe-use is permitted with this notice
    • “May Require Refrigeration” cushings365.posterous.com, 9 / 17 / 10 •  “So, I asked the ones who know. My "Cushie" friends who take it. Those who have had BLA’s. •  “The verdict: –  No, thats a generic warning with fludrocortisone (generic). –  Only at extreme temps should it be refrigerated in the U.S. –  Some of the brands in the UK and other countries need refrigerated.”© e-Patient DaveRe-use is permitted with this notice
    • Dr. Eric Topol© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • •  The practice of medicine is coming apart at the seams – “dis-integrating” – so the pieces can recombine in new ways© e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • •  Connectedness and disappearing boundaries mean we can know things we could not know in the past.© e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • •  In the past we had to guess at Rx based on demographics (similar populations). We’re starting to not need that.© e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • The Beery Twins© e-Patient DaveRe-use is permitted with this notice
    • The Beery Twins© e-Patient DaveRe-use is permitted with this notice
    • The Beery Twins today© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • If the microscope’s happy but the patient’s not, has care been achieved? Has optimal care?? Was the money well spent for customer value?© e-Patient DaveRe-use is permitted with this notice
    • “Shift Index” “...into a world in which the focus of value creation is effective participation in knowledge flows.” –Thomas Friedman Pulitzer prize winner (3x) New York Times January 19, 2010© e-Patient DaveRe-use is permitted with this notice
    • Dutch IVF program had an insane idea •  Give patient couples a wiki, and six months to talk amongst them- selves. The promise: •  “We’ll give you anything you decide – your top ten choices. Unedited.”© e-Patient DaveRe-use is permitted with this notice
    • Top things IVF patients asked for •  I want insurers to reimburse six attempts.  •  I want insurance companies to only count it if a puncture or a replacement has taken place.  •  I want empathy from my doctor, not just technical or financial information.  •  I want separate waiting rooms for pregnant women and patients with a fertility treatment •  I want more time to make an appointment, even in the evening. © e-Patient DaveRe-use is permitted with this notice
    • Achieve ment! Compliance (Whose goal is it, anyway?)© e-Patient DaveRe-use is permitted with this notice
    • Peter Margolis, Cincinnati Children’s .5 x .5 = .25© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • © e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • Are we barking up the wrong tree? Used with permission© e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • Used with permission© e-Patient Dave© e-Patient DaveRe-use is permitted with this noticeRe-use is permitted with this notice
    • Behavioral Economics •  Loss aversion is stronger than the desire to gain •  Cognitive framing; anchoring; ... •  But it’s tricky •  Even for really self-aware people, it’s not as easy as just giving them facts. •  That’s important for medicine.© e-Patient DaveRe-use is permitted with this notice
    • Physician as trusted authority “The oft-expressed fear that patients are using the internet to self-diagnose and self- medicate without reference to medical professionals does not emerge in national phone surveys or in this special rare- disease community© e-Patient Dave survey.”Re-use is permitted with this notice
    • “There’s crap on the internet. We need to get out there and balance it” Wendy Sue Swanson, MD Mother & pediatrician @SeattleMamaDoc Facebook too© e-Patient DaveRe-use is permitted with this notice
    • An OB/Gyn on social media?? @MacObGyn •  “The more info we push out, the better decisions they make” •  “We’ve taken a demographic group and through connected technology they’re engaged in their health” •  “Our patients tell their friends – ‘and he’s on Facebook’”© e-Patient DaveRe-use is permitted with this notice
    • PatientsLikeMe lithium study© e-Patient DaveRe-use is permitted with this notice
    • © e-Patient DaveRe-use is permitted with this notice
    • Me: “Did being an engaged patient save me?” Dr. McDermott: “I have no doubt the interleukin killed the tumors.” “But I don’t know if you could have tolerated enough to do the job if you hadn’t gotten so involved”© e-Patient DaveRe-use is permitted with this notice
    • JAMIA, 1997 e-Patients Can Help Improve Healthcare “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave© e-Patient Dave© e-Patient Dave dave@epatientdave.com Skype: ePatientDaveRe-use is permitted with this noticeRe-use is permitted with this notice