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e-Patient Dave Midwest MLA 10-20-12
 

e-Patient Dave Midwest MLA 10-20-12

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    e-Patient Dave Midwest MLA 10-20-12 e-Patient Dave Midwest MLA 10-20-12 Presentation Transcript

    • You Are Vital to the Future of Healthcare “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.comCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Foundation Principle 1 Patient is not a third person word. Your time will come.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Foundation Principle 2 A pivotal force: The urge to care for our children and eldersCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • 1 + 2 equals: Think about this in terms of your own kids and your own parents. (And maybe yourself.)Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Foundation Principle 3 Everyone performs better when they’re better informed.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Someday you’ll really care how well informed the care team is.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • How I came to be here •  High tech marketing •  Data geek; tech trends; automation •  2007: Cancer kicker •  2008: E-Patient blogger •  2009: Participatory Medicine, Public Speaker •  2010: full time •  2011: internationalCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • “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, 2004Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Because of the Web,Patients Can Connect to Informationand Each Other (and other Providers)
    • Doc Tom said, e-Patients.net founder “e-Patients are E quipped Tom Ferguson MD Engaged 1944-2006 Empowered Enabled”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • e-Patient White Paper e-patients.netCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Pt of futureCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Me? An indicator •  Who’s getting online: –  1989: Me (CompuServe sysop)of the future?? –  2009: 76% 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 onlineCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • JAMIA, 1997Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • The Engaged Patient 12 items in my pre-appointment “agenda” emailCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 “Your  shoulder      will  be  fine  …      but  theres        something        in  your  lung”  
    • Multiple tumors in both lungs Where’s This From??
    • Primary Tumor: Kidney
    • E-Patient Activity 1: Researching my conditionCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Classic Stage IV, Grade 4Renal CellCarcinoma Illustration onthe drug companys web site Median Survival: 24 weeks
    • Facing the ReaperCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • My motherCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • My daughterCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • After the shockyou’re left with the question: What are my options? What can I do?Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Get engaged. Get it in gear. Do everything you can.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • E-Patient Activity 2:“My doctor prescribed ACOR” (Community of my patient peers)
    • 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 hospitalCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • E-Patient Activity 3:Reading (and sharing)my hospital data online
    • E-Patient Activity 4: My own social support network(CaringBridge.org - family and friends - journal & guestbook)
    • E-Patient Activity 5: Tracking my Data During a serious disease, the chance to be engaged (or to help) is a huge mood booster, infinitely better than “Im helpless / theres nothing I can do”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
    • Question:Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Because of the Web,Patients Can Connect to Informationand Each Other (and other Providers)
    • Dr. Lindberg: 400 years “If I read two journal articles every night, at the end of a year Id be 400 years behind.” It’s not humanly possible to keep up.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Lesson learned: Any clinician whose sense of self-worth depends on knowing everything is in big trouble.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • It’s no failure on the clinician’s partif a patient’s seen something they haven’t.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • The lethal lag time: 2-5 years The time it takes after successful research is completed before publication is completed and the articles 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.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • 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)Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • “It may be more dangerous not to google “your condition.”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • “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.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • VA’s “Blue Button” 1 million 2012:(and DoD & Medicare) + Automatic!
    • OpenNotes What happens when patients see their doctors’ notes?Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Announced this past MondayCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • •  99% of patients wanted to continue" •  17-26% of docs preferred not to continue…" –  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"Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Obstacle to adoption: “But patients don’t understand this stuff.”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • If the data’s unclear let’s MAKE it clear Like other industries do.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Thomas Goetz, Wired “It’s time to redesign medical data”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Thomas Goetz, Wired “It’s time to redesign medical data”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Same data – better softwareCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Psoas muscle (My kidney tumor was encroaching on it) my rendering on VisibleBody.comCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Why not “Google Earth for my body”?Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Same data – better softwareCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • The information’s clearerCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • The family’s enabled and empowered.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Health on the Internet: Separating the Gold from the GarbageCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Nov. 2007: This googling patient was a nightmare (Title should have been “When the patient is a yahoo”!)Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • o Feb. 2010: Sites like ACOR & PatientsLikeMe: patients are creating value by connectingCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Jan. 2011: Googling patient helps doc find correct diagnosis more quicklyCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • e-Patient families need information coaches. That would be you.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • http:// b i t .ly / gold from garbageCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • “All knowledge is in constant beta” Gilles Frydman, ACOR founder ICSI / IHI Colloquium, May 2010Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Autopsy shows ... 10-15% of diagnoses were wrong (So how could the treatments be right??)Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Autopsy shows ... 10-15% of diagnoses were wrong (So how could the treatments be right??) He wrote his epilogue to patients: Questions for partnering with your providers on “What else could this be, doc?”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • “Retraction Watch” blogCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Informed Medical Decision MakingCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • “Ultimately, it turned out to be the trade- off between peeing better and sex.”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • “And when it was stated in those terms, SDM flowed into the conversation.”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Adoption of new practices years after discovery Flu vaccine, year 32: 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 Creative Commons Attribution / Share-Alike May be distributed with this license includedCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • What is the standard of care for condition x??Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Great way medlibs can enable families: populate StandardsOfCare.orgCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Web 2.0: “When the web began to harness the intelligence of its users” – Tim O’ReillyCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • “Data Liberación” Todd Park Innovator Entrepreneur HHS Chief Tech Officer US Chief Tech OfficerCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Patients Like MeCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Obstacle: “I hate to bother you...”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • BOTHER US!Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Let’s get bothered! bit.ly / bother amedlib To get bothered: bit.ly / bother-signupCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • You know it’s a movement when the artists and musicians show upCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • The Walking Gallery ReginaHolliday.blogspot.com Regina Holliday’s Medical Mural Advocacy ProjectCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • “When e-Patient Dave pushed the button to send his data to Google Health, what happened was front page news.” False medication warning The hospital transmitted every condition I ever had, with no dates; all conditions were shown as currentCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Blog to print New media gave me “freedom of the press” Traditional media gave me credibility and impact And a conference...Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Amazingly, concerned and activated families do look for health information!Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • It’s the e-PatientCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • MOVIE bit.ly / DataSongCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • Best Care at Lower Cost Institute of Medicine – Sept 2012Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • 2.8 e-Patient Years in Pictures… December 2006 October 2007 May 2009 September 2009Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • You Are Vital to the Future of Healthcare “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.comCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    • May You Get Bothered a Lot. bit.ly / botheramedlibCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using