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"The Changing World Is Enabling New Patient Partnerships"


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Presentation to Texas Hospital Association Quality & Patient Safety keynote, December 2, 2015.

Published in: Health & Medicine
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"The Changing World Is Enabling New Patient Partnerships"

  1. 1. “e-Patient Dave” deBronkart Twitter: @ePatientDave How the Changing World Is Enabling New Patient Partnerships
  2. 2. “It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
  3. 3. “People perform better when they’re informed better.”
  4. 4. How I came to be here • High tech marketing • Data geek; tech trends; automation • 2007: Cancer discover & recovery • 2008: E-Patient blogger • 2009: Participatory Medicine, Public Speaker • 2010: full time • 2011: international
  5. 5. The issue that’s central to our thoughts today:
  6. 6. There’s been a profound shift in where competence and information can be found.
  7. 7. To be wrong about this (or simply out of date) is to be unable to accurately plan for the arriving future.
  8. 8. Fortunately, it’s not hard to understand what’s newly possible.
  9. 9. founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
  10. 10. Pt of future
  11. 11. The Engaged Patient 12 items in my pre-appointment “agenda” email
  12. 12. The Incidental Finding Routine shoulder x-ray, Jan. 2,2007 “Your&shoulder will&be&fine&… but&there’s& something& in&your&lung”
  13. 13. Multiple Tumors in Both Lungs Where’s This From??
  14. 14. Primary Tumor: Kidney
  15. 15. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
  16. 16. “My doctor prescribed ACOR” (Community of my patient peers)
  17. 17. ACOR patients 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
  18. 18. Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
  19. 19. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels? © e-Patient Dave Re-use is permitted with this notice
  20. 20. Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
  21. 21. Closed(system Open(network Transformation(of(Knowledge(Access Slide&by&@ePatientDave&2015&based&on& Engelen&&&Derksen&2010&at
  22. 22. Institute of Medicine – Sept 2012 Major New Report:“Best Care at Lower Cost”
  23. 23. 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.
  24. 24. From the patient’s perspective, what’s important looks different.
  25. 25. The #FirstMRI movement (2011)
  26. 26. Just ask us. Please.
  27. 27. “How can patients participate if they don’t have the information?” – Dr.Danny Sands
  28. 28. Who has the most at stake with the accuracy, completeness and availability of the medical record?
  29. 29. People perform better when they’re informed better.
  30. 30. It’s perverse to keep people in the dark and call them ignorant Corollary:
  31. 31. How to start? Here’s the magic incantation
  32. 32. “I’m the kind of patient who likes to understand as much as I can about my health.”
  33. 33. “Could I ask some questions?”
  34. 34. Obstacle to adoption: “But patients don’t understand this stuff.”
  35. 35. Health literacy
  36. 36. Health clarity
  37. 37. If the data’s unclear let’s MAKE it clear Like other industries do.
  38. 38. Thomas Goetz, Wired
  39. 39. Thomas Goetz, Wired “It’s time to redesign medical data”
  40. 40. Same data – better software. Information: clearer. Consumer: informed, enabled.
  41. 41. Clarity is power.
  42. 42. Have you noticed – there are a lot more old people?
  43. 43. Half of everyone who’s ever been 65 is alive today Population today: ~7.0 billion End ofWorldWar II: ~2.3 billion
  44. 44. It’s because y’all saved us from dying!!
  45. 45. My classmate Jay
  46. 46. The Futile Urge for Certainty
  47. 47. “If I read two journal articles every night, at the end of a year I’d be 400 years behind.” Dr. Lindberg: 400 years
  48. 48. The lethal lag time: 2-5 years The time it takes after successful research is completed before publication is completed and the article’s been read.
  49. 49. Adoption of new practices years after discovery The “17 years” thing From A.Balas, Institute of Medicine, inYearbook of Medical Informatics 2000 Flu(vaccine,(year(32:( 55%(doing(it,( 45%(still(not Beta(blockers,(year(18:( 62%(doing(it,( 38%(still(not Diabetic(foot(care,(year(7:( 20%(doing(it,( 80%(still(not Cholesterol,(year(16:( 65%(doing(it,( 35%(still(not Creative CommonsAttribution / Share-Alike May be distributed with this license included
  50. 50. Scurvy 264 years!
  51. 51. My head hurts. Can we have some fun now??
  52. 52. When assets digitize, things change fast.
  53. 53. Today, radiological image data is being used for amazing things.
  54. 54. 3d print baby’s heart
  55. 55. 3d print heart for transplant printed-heart-to-improve-surgery
  56. 56. I’m thinking – “Someday, 3D printing will move down market to consumers”
  57. 57. “3D Print Yourself”
  58. 58. The obvious question: “That’s cute, but what could anyone really do with it?”
  59. 59. You never know. That’s the point. Liberate the data!
  60. 60. Steven Keating
  61. 61. Googling is a sign of patient engagement!
  62. 62. Predictably, the empire starts to strike back. It can look ludicrous.
  63. 63. Post(on(LinkedIn: The(ad(videos:
  64. 64. Meanwhile, evidence grows that the current paradigm is collapsing
  65. 65. Reported June 2015
  66. 66. Reported June 2015
  67. 67. Closed(system Open(network Transformation(of(Knowledge(Access Slide&by&@ePatientDave&2015&based&on& Engelen&&&Derksen&2010&at
  68. 68. October 2007 2.8 e-PatientYears in Pictures December 2006 May 2009
  69. 69. It’s great to be alive.
  70. 70. “e-Patient Dave” deBronkart Twitter: @ePatientDave Yes, the Changing World Is Enabling New Patient Partnerships