Mississippi Health Care Symposium 2014 - e-Patient Dave


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Opening keynote. Focus on the patient as an active partner in improving safety by detecting errors.

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Mississippi Health Care Symposium 2014 - e-Patient Dave

  1. 1. JAMIA, 1997Let Patients Help Improve Safety and Quality “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com
  2. 2. Today’s Wall Street Journal
  3. 3. Yo,Wall Street: it ain’t just theVA!
  4. 4. Relation between cost & quality Elliott Fisher at Health Datapalooza 6/2/14 (Answer: NO relation between cost & quality. Enormous variation!) (What if everyone started doing what the lower left does?) Deathrate! Cost of the care !
  5. 5. “It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
  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 •  2011: international
  7. 7. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled Doc Tom said, e-Patients are
  8. 8. Pt of future
  9. 9. 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
  10. 10. The Engaged Patient 12 items in my pre-appointment agenda email
  11. 11. The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 Your%shoulder% %%will%be%fine%…% %%but%there's%% %%something%% %%in%your%lung %
  12. 12. Multiple tumors in both lungs Where’sThis From??
  13. 13. PrimaryTumor: Kidney
  14. 14. E-Patient Activity 1: Researching my condition
  15. 15. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company's web site Median Survival: 24 weeks
  16. 16. After the shock you’re left with the question: What are my options? What can I do?
  17. 17. Get engaged. Get it in gear. Do everything you can.
  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 –  And one of them was at my hospital
  20. 20. E-Patient Activity 3: Reading (and sharing) my hospital data online
  21. 21. Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
  22. 22. Question:
  23. 23. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
  24. 24. 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
  25. 25. 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.
  26. 26. 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)
  27. 27. It may be more dangerous not to google your condition.
  28. 28. 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.
  29. 29. Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
  30. 30. No clinician can possibly perform to the top of their training if the data they’re given is wrong.
  31. 31. “Now I know why docs don’t give you scan data. I see theVirgin 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
  32. 32. “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
  33. 33. 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.”
  34. 34. Data quality is essential. Let Patients Help.
  35. 35. “How can patients participate if they can’t see what I see?” – Dr.Danny Sands
  36. 36. Obstacle to adoption: “Patients will flood us with time-wasting questions.”
  37. 37. OpenNotes What happens when patients see their doctors’ notes?
  38. 38. Announced this past Monday
  39. 39. •  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!
  40. 40. 2012: recognition from the establishment © e-Patient Dave Re-use is permitted with this notice
  41. 41. Institute of Medicine – Sept 2012 Major New Report:“Best Care at Lower Cost”
  42. 42. 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 care team.
  43. 43. Gorgeous, wonderful new book by Parkinson patients
  44. 44. Final Lesson: When assets digitize, things move fast.
  45. 45. Someday 3D printing will move downmarket to consumer level
  46. 46. Oh wait…
  47. 47. October 2007 2.8 e-PatientYears in Pictures December 2006 May 2009
  48. 48. JAMIA, 1997Let Patients Help Improve Safety and Quality “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com