AMIA 2013 convention - opening plenary (standing ovation!)


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Opening keynote at the American Medical Informatics Association conference, Nov. 2013. Includes introduction by Dr. Danny Sands. NOTE: this is another deck where Slideshare can't read the right fonts, so some layouts are broken. Feel free to yell at them.

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AMIA 2013 convention - opening plenary (standing ovation!)

  1. 1.  Daniel Z. Sands, MD, MPH Society for Participatory Medicine Beth Israel Deaconess Medical Center Harvard Medical School Boston, MA © Copyright 2013 D. Z. Sands, All Rights Reserved Introduction of e-Patient Dave
  2. 2.  President John F. Kennedy Berlin Wall, Jun 26, 1963 © Copyright 2013 D. Z. Sands, All Rights Reserved All free men … are citizens of Berlin, and therefore … I take pride in the words “Ich bin ein Berliner!”Ich bin ein Berliner!
  3. 3.  E-Patient Dave Circa 2010, as interpreted by Dr. Danny Sands, who shares this feeling © Copyright 2013 D. Z. Sands, All Rights Reserved All people … are or will be patients, and therefore … I take pride in the words “I am a patient!”I am a patient!
  4. 4.  Former technology manager, working in industries as diverse as typesetting and SaaS  Became blogger, speaker, health policy advisor, and e-patient advocate after beating stage IV renal cell carcinoma in 2007  Co-founded Society for Participatory Medicine in 2009 and has helped lead organization—we are currently co-chairs of the board  Frequently quoted in media  TEDx talk “Let Patients Help” is in top half of most viewed TED talks  Frequent keynote presenter, occasionally with his PCP  Author of two books, including one as collaboration with his PCP  In 2009 HealthLeaders Media named Dave and his PCP to their annual list of “20 People Who Make Healthcare Better” © Copyright 2012 D. Z. Sands, All Rights Reserved Dave deBronkart, a.k.a., e-Patient Dave
  5. 5. “e-Patient Dave” deBronkart Twitter: @ePatientDave Information at the point where it’s needed can save lives.
  6. 6. 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
  7. 7. The only purpose for recording information (on paper or electronic) is so someone can read it back and act on it.
  8. 8. To do this with computers, we encode it and decode it.
  9. 9. It matters whether the picture you get when you read it back matches the picture you intended when you stored it
  10. 10. Source: Wikipedia DIKW-diagram.png
  11. 11. founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
  12. 12. 1998
  13. 13. Pt of future
  14. 14. Me? An indicator of the future?? • Who’s getting online: – 1989: Me (CompuServe sysop) – 2009: 76% of US adults (Pew) • Who’s romancing online: – 1999: I met my wife ( – 2009: One in eight weddings in the U.S. met online – 2011: One in five couples met online
  15. 15. 2007: My “Incidental Finding” Routine shoulder x-ray, Jan. 2, 2007 “Your shoulder will be fine … but there's something in your lung”
  16. 16. Multiple tumors in both lungsWhere’s This From??
  17. 17. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company's web site Median Survival: 24 weeks
  18. 18. E-Patient Activity 2: “My doctor prescribed ACOR” (Community of my patient peers)
  19. 19. 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
  20. 20. E-Patient Activity 3: Reading (and sharing) my hospital data online
  21. 21. E-Patient Activity: Tracking my data During a serious disease, the chance to be engaged (or to help) is a huge mood booster, infinitely better than “I'm helpless / there's nothing I can do”
  22. 22. Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
  23. 23. 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
  24. 24. 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
  25. 25. My classmate Jay
  26. 26. Half of everyone who’s ever been 65 is alive today Population today: ~7.0 billion End of World War II: ~2.3 billion
  27. 27. Question:
  28. 28. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
  29. 29. Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
  30. 30. “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
  31. 31. 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.
  32. 32. 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)
  33. 33. “It may be more dangerous not to google your condition.”
  34. 34. “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.
  35. 35. Web 2.0: “When the web began to harness the intelligence of its users.” – Tim O’Reilly
  36. 36. Liquidity transforms what’s possible because it alters the availability of a vital resource.
  37. 37. Information liquidity. Data liquidity.
  38. 38. 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
  39. 39. “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 ...
  40. 40. “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
  41. 41. People perform better when they’re informed better.
  42. 42. What if the information they give you is wrong?
  43. 43. VA’s Veterans eHealth University, 2012 – audience response: Have you looked in your medical record? Do you know if it has mistakes?
  44. 44. “Now I know why docs don’t give you scan data. I see the Virgin Mary, Jimmy Hoffa, several forks, and Saddam’s yellowcake hiding in my guts.” “And this CT scan makes my butt look big.” @Xeni Live tweeting, 12-18-2011
  45. 45. “So I figure out how to open my bone scan data. I look.” “What the...” “What’s that ****-shaped ghost-shadow thing— it looks like I have a penis!” “I call a hacker pal. ‘That, Xeni, is a ****.’” “I look at metadata more carefully. THEY GAVE ME THE WRONG DATA. SOME OTHER DUDE’S SCANS.” @Xeni Next day: 12-19-2011
  46. 46. 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
  47. 47. Who has the most at stake with the accuracy, completeness and availability of the medical record?
  48. 48. Data quality is essential. Let Patients Help.
  49. 49. “The Wicked Bible” (1631)
  50. 50. New: Patient chart notes
  51. 51. “My patients aren’t like that.” “They aren’t asking for this.” Objection:
  52. 52. Until people get experience, they’re inexperienced!
  53. 53. It’s perverse to keep people in the dark and call them ignorant Corollary:
  54. 54. Capture iNFORMATION about the iNDIVIDUAL and apply iNFORMATICS to create iNTELLIGENCE that drives iNNOVATION to radically iMPROVE healthcare
  55. 55. Morris Collen turns 100
  56. 56. “e-Patient Dave” deBronkart Twitter: @ePatientDave Information at the point where it’s needed can save lives.