National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
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National Board of Medical Examiners 100th Annual Meeting (plenary), 2014

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    National Board of Medical Examiners 100th Annual Meeting (plenary), 2014 National Board of Medical Examiners 100th Annual Meeting (plenary), 2014 Presentation Transcript

    • JAMIA, 1997 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave Let Patients Help Heal Healthcare
    • JAMIA, 1997 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave Let Patients Help DefineWhat Care Is
    • “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 HouseWays & Means subcommittee on health, 2004
    • How I came to be here •  High tech marketing •  Data geek; tech trends; automation •  2007: Cancer discovery & recovery
    • How I came to be here •  High tech marketing •  Data geek; tech trends; automation •  2007: Cancer discovery & recovery •  2008: E-Patient blogger •  2009: Participatory Medicine, Public Speaker •  2010: full time •  2011: international
    • I do slogans.
    • I do slogans.
    • I do slogans.
    • I do slogans.
    • I do slogans.
    • JAMIA, 1997
    • e-Patients.net founder Tom Ferguson MD 1944-2006
    • e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
    • JAMIA, 1997
    • on.TED.com/Dave
    • on.TED.com/Dave
    • JAMIA, 1997 USMLE: 1989
    • I owe my well-being to these USMLE victims: Dr. David McDermott, Oncologist 1991-2
    • I owe my well-being to these USMLE victims: Dr. David McDermott, Oncologist 1991-2 Dr. Andrew Wagner, Urologist/surgeon 1998, 1999, 2001
    • I owe my well-being to these USMLE victims: Dr. David McDermott, Oncologist 1991-2 Dr. Andrew Wagner, Urologist/surgeon 1998, 1999, 2001 Dr. Megan Anderson, Orthopedic surgeon 1996
    • There’s a thread you follow
    • Me? An indicator of the future?? •  Who’s getting online: –  1989: Me (CompuServe sysop) –  2009: 83% of US adults (Pew)
    • Me? An indicator of the future?? •  Who’s getting online: –  1989: Me (CompuServe sysop) –  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
    • 2007: My “Incidental Finding” Routine shoulder x-ray, Jan. 2, 2007 Your%shoulder% %%will%be%fine%…% %%but%there's%% %%something%% %%in%your%lung %
    • Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company's web site
    • Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company's web site Median Survival: 24 weeks
    • E-Patient Activity 2: My doctor prescribed ACOR (Community of my patient peers)
    • Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
    • Question:
    • How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
    • Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
    • 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. Dr. Lindberg: 400 years
    • The lethal lag time: 2-5 years During this time, people who might have benefitted can die. Patients have all the time in the world to look for such things. The time it takes after successful research is completed before publication is completed and the article’s been read.
    • Compare with To Err is Human (98,000 deaths/yr Nov 1999) Death by Googling: Not. (Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search)
    • It may be more dangerous not to google your condition.
    • 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.
    • Problem(?) Chronic Disease Epidemic CDC#(2004)#Ten#Great#Public#Health#Achievements#in#the#20th#Century#&#Leading#Causes#of#Death# Jones#(2012)#The#Burden#of#Disease#and#the#Changing#Task#of#Medicine.#NEJM% Used#with#permission#of#John#O.#Moore#MD,#PhD#####newmed.media.mit.edu#
    • Problem(?) Chronic Disease Epidemic CDC#(2004)#Ten#Great#Public#Health#Achievements#in#the#20th#Century#&#Leading#Causes#of#Death# Jones#(2012)#The#Burden#of#Disease#and#the#Changing#Task#of#Medicine.#NEJM% Used#with#permission#of#John#O.#Moore#MD,#PhD#####newmed.media.mit.edu#
    • My classmate Jay
    • Half of everyone who’s ever been 65 is alive today Population today: ~7.0 billion End of World War II: ~2.3 billion
    • There’s a thread you follow
    • Protecting the public
    • •  Patients used the PHR a mean of 42.1 times during the 1-year intervention period. 
    • •  Patients used the PHR a mean of 42.1 times during the 1-year intervention period.  •  In the PHR group, the total proportion of eligible preventive services received …
    • •  Patients used the PHR a mean of 42.1 times during the 1-year intervention period.  •  In the PHR group, the total proportion of eligible preventive services received ... –  increased from 24% at baseline to 40%  at the 12-month follow-up, whereas 
    • •  Patients used the PHR a mean of 42.1 times during the 1-year intervention period.  •  In the PHR group, the total proportion of eligible preventive services received ... –  increased from 24% at baseline to 40%  at the 12-month follow-up, whereas  –  it declined in usual care group, from 25% to 18%. 
    • Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
    • Liquidity transforms what’s possible because it alters the availability of a vital resource.
    • Not Liquid •  Moving it takes effort •  Slow and predictable •  Unexplained arrivals are suspicious
    • Not Liquid Liquid •  Moving it takes effort •  Slow and predictable •  Unexplained arrivals are suspicious •  Frictionless – controlling the flow takes effort •  Fast and unpredictable •  “Tracks” everywhere, free
    • In the patient- centered world, who gets to say what value is? (In all other quality fields, quality is defined by the ultimate consumer. This is typically not done in healthcare, which I think is a mistake.)
    • If the microscope’s happy but the patient’s not, has care been achieved?
    • If the microscope’s happy but the patient’s not, has care been achieved? Has optimal care??
    • 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?
    • 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.”
    • 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.”
    • Top things IVF patients asked for •  I want insurers to reimburse six attempts.  •  I want insurance companies to only count it as an attempt if the embryo gets started. 
    • Top things IVF patients asked for •  I want insurers to reimburse six attempts.  •  I want insurance companies to only count it as an attempt if the embryo gets started.  •  I want empathy from my doctor, not just technical or financial information. 
    • Top things IVF patients asked for •  I want insurers to reimburse six attempts.  •  I want insurance companies to only count it as an attempt if the embryo gets started.  •  I want empathy from my doctor, not just technical or financial information.  •  I want separate waiting rooms for families who’ve conceived
    • Note also: in the patient’s view, success is achievement (not obedience)
    • Compliance (Whose goal is it, anyway?) Achievement!
    • Speaking of the patient’s view…
    • ©
    • •  0: Haha! I'm not wearing any pants! ©
    • •  0: Haha! I'm not wearing any pants! •  2: Awesome! Someone just offered me a free hot dog! ©
    • •  0: Haha! I'm not wearing any pants! •  2: Awesome! Someone just offered me a free hot dog! •  4: Huh. I never knew that about giraffes. ©
    • •  0: Haha! I'm not wearing any pants! •  2: Awesome! Someone just offered me a free hot dog! •  4: Huh. I never knew that about giraffes. •  6: I'm sorry about your cat, but can we talk about some- thing else now? I'm bored. ©
    • •  0: Haha! I'm not wearing any pants! •  2: Awesome! Someone just offered me a free hot dog! •  4: Huh. I never knew that about giraffes. •  6: I'm sorry about your cat, but can we talk about some- thing else now? I'm bored. •  8: The ice cream I bought barely has any cookie dough chunks. I am disappointed. ©
    • •  0: Haha! I'm not wearing any pants! •  2: Awesome! Someone just offered me a free hot dog! •  4: Huh. I never knew that about giraffes. •  6: I'm sorry about your cat, but can we talk about some- thing else now? I'm bored. •  8: The ice cream I bought barely has any cookie dough chunks. I am disappointed. •  10: You hurt my feelings and now I'm crying! ©
    • ©
    • Protecting the public
    • Can we measure… Dissemination of new knowledge? Patients assume ! their clinicians know and use ! the best available methods. "
    • Physician adoption of new practices years after discovery The “17 years” thing From A. Balas, Institute of Medicine, inYearbook of Medical Informatics 2000 Creative Commons Attribution / Share-Alike May be distributed with this license included
    • Physician adoption of new practices years after discovery The “17 years” thing From A. Balas, Institute of Medicine, inYearbook of Medical Informatics 2000 Flu vaccine, year 32: 55% doing it, 45% still not Beta blockers, year 18: 62% doing it, 38% still not Diabetic foot care, year 7: 20% doing it, 80% still not Cholesterol, year 16: 65% doing it, 35% still not Creative Commons Attribution / Share-Alike May be distributed with this license included
    • From The Fourth Paradigm by Microsoft Research
    • Scurvy" 264! years!" From The Fourth Paradigm by Microsoft Research
    • Scurvy" 264! years!" From The Fourth Paradigm by Microsoft Research
    • Shortfalls: RobynTamblyn’s data
    • Can we measure… Accurate, careful management of health IT?
    • Pre-op:“At least you won’t be lopsided.” “What do you mean?” “You’re getting a bilateral mastectomy.” “No I’m not!” “That’s what came to us on this paper.”
    • Can we measure… Good communication skills with the computer involved?
    • People perform better when they’re informed better.
    • It’s perverse to keep people in the dark and call them ignorant Corollary:
    • “How can patients participate if they can’t see what I see?” – Dr.Danny Sands
    • Can we measure… Ability to help patients take advantage of available data?
    • •  99% of patients wanted to continue"
    • •  99% of patients wanted to continue" •  17-26% of docs preferred not to…" – But when given the chance to stop, none did"
    • •  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"
    • “My patients aren’t like that.” “They aren’t asking for this.” Can we be sure we don’t underestimate?
    • Congrats: Fewer neckties, more X
    • Next step: Add anasouptics!
    • There’s a thread you follow
    • Protecting the public
    • Paternalistic caring “No, honey – you don’t know what you need.” “I’ll take care of you.” Sensible – up to a point “I’ll decide for you.”
    • Nothing you do can stop time’s unfolding.
    • You don’t ever let go of the thread.
    • Please
    • JAMIA, 1997 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave Let Patients Help Heal Healthcare
    • JAMIA, 1997 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave Let Patients Help DefineWhat Care Is