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Doctors & Patients on the Same Page: #SIIM18 opening keynote

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Opening address to the 2018 annual meeting of the Society for Imaging Informatics in Medicine.

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Doctors & Patients on the Same Page: #SIIM18 opening keynote

  1. 1. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Doctors & Patients on the Same Page: Welcome to the Age of Participatory Medicine
  2. 2. The great question of information theory: “What does this mean?”
  3. 3. Foundation Principles
  4. 4. 1: Knowledge is Power.
  5. 5. Corollary: It’s perverse to keep people in the dark and conclude they have no potential.
  6. 6. 2: People can perform better when they’re informed better
  7. 7. 3: But information alone doesn’t change behavior.
  8. 8. 4:When assets digitize, things change fast.
  9. 9. Corollary:WATCH OUT. Don’t get caught as an expert in the expired reality.
  10. 10. “A new scientific truth does not triumph by convincing its opponents and making them see the light, Max Planck Nobel Prize, 1918
  11. 11. “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, Max Planck Nobel Prize, 1918
  12. 12. “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” Max Planck Nobel Prize, 1918
  13. 13. 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 speaking • 2010: Full time • 2011: international • 2012: med schools, advisory, consult • 560+ events, 18 countries, 1400 blog posts, 11 universities, 18 articles, 2 book chapters
  14. 14. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled DocTom said, e-Patients are
  15. 15. “The emerging world of the e-patient cannot be fully understood and appreciated in the context of pre-internet medical constructs.” 2001
  16. 16. May 18 @DrDannySands
  17. 17. Pt of future
  18. 18. 18
  19. 19. 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
  20. 20. 2007: My “Incidental Finding” Routine shoulder x-ray, Jan. 2, 2007 Your shoulder will be fine … but there's something in your lung
  21. 21. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
  22. 22. My doctor prescribed ACOR (Community of my patient peers)
  23. 23. My patient peers 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
  24. 24. My patient peers 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
  25. 25. Surgery & Interleukin worked
  26. 26. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
  27. 27. Because of the Web, patients can connect to information and each other
  28. 28. Social media:“Information capillaries”
  29. 29. Transformation of Knowledge Access Slide by @ePatientDave 2015 based on Engelen & Derksen 2010 at Closed system Open network Slide by @ePatientDave 2015 based on Engelen & Derksen 2010 at Transformation of Knowledge Access
  30. 30. What do we mean by “empowered”?
  31. 31. Empowerment “Increasing the capacity of individuals or groups to make choices [about what they want] and to transform those choices into desired actions & outcomes” World Bank, 2002
  32. 32. Empowerment “An empowering approach to participation treats poor people as co-producers with authority and control over decisions and resources devolved to the lowest appropriate level.”
  33. 33. Empowerment “An empowering approach to participation treats patients as co-producers with authority and control over decisions and resources devolved to the lowest appropriate level.”
  34. 34. Let’s look at what some actual e-patients said yesterday when I asked…
  35. 35. Sara Riggare, Stockholm
  36. 36. Objection: “Okay for you, but my patients aren’t asking for this.”
  37. 37. So it goes in every culture change.
  38. 38. Don’t get stuck being a proud expert on obsolete beliefs
  39. 39. 1967 1972 1999 Paradigm errors è wrong expectations 2017
  40. 40. Nov 2016
  41. 41. Let’s see what some highly activated e-patients are doing to be responsible for whatever they can do.
  42. 42. Hugo Campos wants his ICD data
  43. 43. Kardia (née “AliveCor”): Smartphone ECG
  44. 44. Hugo Campos @hugooc HugoOC@gmail.com My first year with the AliveCor February 8, 2013
  45. 45. @DanaMLewis
  46. 46. #DIYPS (“Do-it-yourself Pancreas System”
  47. 47. #DIYPS: Open Source pancreas! (“Do-it-yourself Pancreas System”
  48. 48. #OpenAPS users are tweeting
  49. 49. Cognitive dissonance sets in, and the mind seeks to resolve it: “It’s because they’re college graduates.”
  50. 50. Meet Kim Goodsell
  51. 51. SharonTerry on NPR
  52. 52. OpenNotes What happens when patients see their unedited doctors’ notes?
  53. 53. • 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
  54. 54. Information alone doesn’t change behavior
  55. 55. November 2014
  56. 56. Self-Monitoring CAN Improve Outcomes WithingsWi-Fi scale Pre-Diabetes Diagnosis Fitness wristband & heart band
  57. 57. Self-Monitoring CAN Improve Outcomes Withings Wi-Fi scale Pre-Diabetes Diagnosis Fitness wristband & heart band YMCA Diabetes Prevention Program (food training & physical activity) MyFitnessPal diet tracking app Strong support from spouse
  58. 58. p.s.: My providers can’t see this in their computers! OMG, I’m a runner now
  59. 59. Someday, 3D printing will move “down market” to consumers
  60. 60. “3D Print Yourself”
  61. 61. What could I do with THIS??
  62. 62. Um, I could look at it…
  63. 63. The obvious question: “That’s cute, but what could anyone really do with it?”
  64. 64. Steven Keating
  65. 65. What can you do to help? • Lead. Spread the word: the tipping point is here • Make sure everyone knows HIPAA’s access rights! • Lead: Spread the word to other professions that good things can happen when pts see the images • Speedy release of image data
  66. 66. William Gibson “The future is here –
  67. 67. William Gibson “The future is here – it’s just not evenly distributed yet”
  68. 68. October 2007 2.8 e-PatientYears in Pictures December 2006 May 2009
  69. 69. The great question of information theory: “What does this mean?”
  70. 70. Please, enable contribution: Let Patients Help.
  71. 71. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Doctors & Patients on the Same Page: Welcome to the Age of Participatory Medicine

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