e-Patients: Sharing the knowledge, sharing the work

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e-Patient Dave's 40 minute keynote at KPN's "Meesters in de Zorg" (Masters in Health) event at the Rijksmuseum, October, 2012

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  • 1543
  • 1455 then 1517
  • In his 2009 TED talk on The Next Web, Tim Berners-Lee, inventor of the Web, said this is SUCH a big deal that he got people chanting “Raw Data Now.” And I’ve got one to match it:
  • e-Patients: Sharing the knowledge, sharing the work

    1. 1. The e-Patient Movement Engaged e-Patients are Changing What’s Possible in Healthcare “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave (introduce yourself please!) LinkedIn.com / in / ePatientDave dave@epatientdave.comCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    2. 2. “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
    3. 3. How I came to be here • A graphic arts technology marketing guy who got sick and experienced health care • 2007: Cancer • 2008: blogging • 2009: Participatory Medicine, Speaking • 2011: internationalCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    4. 4. Doc Tom said, e-Patients.net founder “e-Patients are E quipped MD Tom Ferguson Engaged 1944-2006 Empowered Enabled”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    5. 5. Patient Engagement has nothing to do with politics and who pays for what.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    6. 6. It has everything to do with the relationship: sharing the knowledge, the authority, the information, the work.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    7. 7. Pt of futureCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    8. 8. Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    9. 9. Me? An indicator • Who’s getting online: – 1989: Me (CompuServe sysop)of the future?? – 2009: 76% of US adults online • 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
    10. 10. Because of the Web,Patients Can Connect to Informationand Each Other (and other Providers)
    11. 11. The Engaged Patient 12 items in my pre-appointment “agenda” emailCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    12. 12. The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 “Your shoulder will be fine … but theres something in your lung”
    13. 13. Multiple tumors in both lungs
    14. 14. Classic Stage IV, Grade 4Renal CellCarcinoma Illustration onthe drug company’s web site Median Survival: 24 weeks
    15. 15. E-Patient Activity 2:“My doctor prescribed ACOR” (Community of my patient peers)
    16. 16. 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
    17. 17.  e-patients.net Dr. Lindberg: 400 years “If I read two journal articles every night, at the end of a year I’d be 400 years behind.” The lethal lag time: 2-5 yearsCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    18. 18. “These conclusions are no more anti-doctor or anti-medicine than Copernicus and Galileo ..were anti-astronomer.” Informed people can contribute more today than in the past.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    19. 19. Gutenberg’s bible 1465Informationbecameavailableto a new classof people.They didn’tneed expertsto read andinterpret it.
    20. 20. Martin Luther’s 95 Theses 495 years ago this week
    21. 21. 1980: We were #1 in world sales (Compugraphic)
    22. 22. Then: hello.
    23. 23. Goodbye.
    24. 24. Cluetrain Manifesto, 1999: “Markets are Conversations” (Graphics by Forrester)Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    25. 25. “The Wicked Bible” (1631) New technology brings new power and new risks. Expect it! Plan for it. Don’t be surprised.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    26. 26. Obstacle to adoption: “But patients don’t understand these things.”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    27. 27. 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
    28. 28. Thomas Goetz, WiredCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    29. 29. Thomas Goetz, Wired “It’s time to redesign medical data”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    30. 30. Same data – better softwareCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    31. 31. The information’s clearerCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    32. 32. The family’s enabled and empowered.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    33. 33. 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
    34. 34. Why not “Google Earth for my body”?Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    35. 35. Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    36. 36. Same data – better softwareCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    37. 37. Revealing the information hidden in the dataCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    38. 38. Information is empowering.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    39. 39. Hiding it is disempowering.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    40. 40. Empowerment: Knowing what you want. Asking for it.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    41. 41. Activity $99 FitbitCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    42. 42. Weight $159 Withings WiFi ScaleCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    43. 43. Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    44. 44. “How can patients participate if they can’t see what I see?” – Dr. Danny SandsCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    45. 45. Guess what: HE can’t see MY device data.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    46. 46. Obstacle to adoption: “But patients don’t want this.”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    47. 47. Until people realize they have the power to ask, they don’t askCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    48. 48. We are at the start of a new cultural awakening.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    49. 49. Enabled by puttinginformation in the handsof people who can use itCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    50. 50. 2012 Major new report: “Best Care at Lower Cost”Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    51. 51. Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    52. 52. Gutenberg’s bibleInformationbecameavailableto a newclass ofpeople.
    53. 53. Cluetrain Manifesto, 1999: “Markets are Conversations” (Graphics by Forrester)Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    54. 54. Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    55. 55. Let Patients Help.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    56. 56. Participatory Medicine Sharing the knowledge Sharing responsibility Sharing information Sharing the workCopyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using
    57. 57. Thank you.Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

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