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Mississippi Hospital Association 6-5-2014

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The event had a strong football theme so I drew some parallels with football legends who have overcome adversity ... including some from Ole Miss :-), as well as Doug Flutie's legendary Hail Mary pass in 1984

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Mississippi Hospital Association 6-5-2014

  1. 1. JAMIA, 1997Let Patients Help in the new world of healthcare “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com
  2. 2. “It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
  3. 3. Triumph over circumstance
  4. 4. “holy war”
  5. 5. 1980: We were #1 in world sales (Compugraphic)
  6. 6. 1983 Liberty Bowl – Nasty Circumstances • Average punt: 28 yards! • 5 touchdowns … • … only ONE extra point • Final: Notre Dame 19, BC 18 • The MVP was the losing quarterback
  7. 7. Doug Flutie – 16 for 37 (43%) – 3 TDs – 2 INT NCAA passer rating: 124.43
  8. 8. Evaluations can be rough Some NFL passers who’ve had a ZERO rating: • Earl Morrall, 9/19/65 • Bob Griese, 9/28/68 • Johnny Unitas, 10/20/68 • Len Dawson, 11/22/70 • Warren Moon (2x) • Norm Snead (2x) • Joe Namath (2x) • Terry Bradshaw (3x)
  9. 9. Then, triumphs: • Franchise records for – Most passing yards – Most touchdowns – Most completions • 2 Super Bowl wins – Beat my Patriots both times – And MVP both times • Only QB ever to get 4900 yards & Super Bowl same year Eli Manning Two other Ole Miss “winners” of NFL zero ratings who went on to triumph
  10. 10. Two other Ole Miss “winners” of NFL zero ratings who went on to triumph Then, triumphs: • Franchise records for – Most passing yards – Most touchdowns – Most completions • 2 Super Bowl wins – Beat Patriots both times – And MVP both times • Only QB ever to get 4900 yards & Super Bowl same year Eli Manning His dad Archie
  11. 11. 3:41 video of Doug Flutie’s Hail Mary pass, Thanskgiving Friday, 1984 http://dave.pt/Flutie
  12. 12. We were #1
  13. 13. But then: hello.
  14. 14. Triumph over circumstance
  15. 15. Foundation Principles • Patient is not a third person word – Your time will come • 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 is strong.
  16. 16. 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
  17. 17. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
  18. 18. Pt of future
  19. 19. 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 (Match.com) – 2009: One in eight weddings in the U.S. met online – 2011: One in five couples met online
  20. 20. The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 “Your shoulder will be fine … but there's something in your lung”
  21. 21. Multiple tumors in both lungsWhere’s This From??
  22. 22. Primary Tumor: Kidney
  23. 23. E-Patient Activity 1: Researching my condition
  24. 24. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company's web site Median Survival: 24 weeks
  25. 25. After the shock you’re left with the question:What are my options? What can I do?
  26. 26. Get engaged. Get it in gear. Do everything you can.
  27. 27. E-Patient Activity 2: “My doctor prescribed ACOR” (Community of my patient peers)
  28. 28. 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
  29. 29. E-Patient Activity 3: Reading (and sharing) my hospital data online
  30. 30. Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
  31. 31. Question:
  32. 32. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
  33. 33. “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
  34. 34. 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.
  35. 35. 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)
  36. 36. “It may be more dangerous not to google your condition.”
  37. 37. “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.
  38. 38. Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
  39. 39. “But it’s HARD to change our attitudes and habits”
  40. 40. It can be done.
  41. 41. “How can patients participate if they can’t see what I see?” – Dr. Danny Sands
  42. 42. Obstacle to adoption: “Patients will flood us with time-wasting questions.”
  43. 43. OpenNotes What happens when patients see their doctors’ notes?
  44. 44. • 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
  45. 45. No clinician can possibly perform to the top of their training if the data they’re given is wrong.
  46. 46. “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
  47. 47. “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
  48. 48. 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
  49. 49. Data quality is essential. Let Patients Help.
  50. 50. Urgency: The Demographic Crunch
  51. 51. 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
  52. 52. 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
  53. 53. My classmate Jay
  54. 54. Half of everyone who’s ever been 65 is alive today Population today: ~7.0 billion End of World War II: ~2.3 billion
  55. 55. Dr. Eric Topol
  56. 56. AliveCor: iPhone EKG 12/3/12: “FDA clears iPhone heart monitor, doctors can pre- order” Feb 2014: OTC
  57. 57. Final Lesson: When assets digitize, things move fast.
  58. 58. Someday 3D printing will move downmarket to consumer level
  59. 59. Oh wait…
  60. 60. 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
  61. 61. 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
  62. 62. Patch Adams
  63. 63. October 2007 2.8 e-Patient Years in Pictures December 2006 May 2009
  64. 64. Triumph over circumstance
  65. 65. JAMIA, 1997Let Patients Help in the new world of healthcare “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com

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