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Patient Experience, Empowerment, Engagement: A Business Leader’s View

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Opening keynote at DIA Europe, Vienna, Feb 5, 2019. Our paradigm of patient is significantly out of date, and it's holding back progress - a new class of "Superpatients" are *extending* science when the doctors are out of answers. Amazing!

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Patient Experience, Empowerment, Engagement: A Business Leader’s View

  1. 1. Dave deBronkart Twitter: @ePatientDave dave@epatientdave.com Patient Experience, Empowerment, Engagement: A Business Leader’s View
  2. 2. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
  3. 3. If you live long enough, things change. So don’t be surprised if new things are possible! Fundamental principle for thinkers at this conference
  4. 4. Stages a scientific field goes through • Normal science • Puzzle solving • Paradigm • Anomaly • Crisis • Revolution
  5. 5. I assert: our paradigm of patient is broken, and it’s holding back progress
  6. 6. Our challenge in these three days: Can we figure out where the mistake is and see a new way forward?
  7. 7. What if a new generation of “super-patients” is already succeeding in diagnosis and sometimes even inventing new treatments??
  8. 8. 2007: My “Incidental Finding” Routine shoulder x-ray, Jan. 2, 2007 “Your shoulder will be fine … but there's something in your lung”
  9. 9. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
  10. 10. “My doctor prescribed ACOR” (Community of my patient peers)
  11. 11. My patient peers told me: • Welcome to the club nobody wants to join. We know what it’s like. • 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
  12. 12. My patient peers told me: • Welcome to the club nobody wants to join. We know what it’s like. • 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
  13. 13. Surgery & Interleukin worked – in six months
  14. 14. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
  15. 15. Answer: Knowledge is power, and access has changed forever
  16. 16. Because of the Web, patients can connect to information and each other
  17. 17. Social media: “information capillaries”
  18. 18. Some innovator patients are already doing this. They are really “engaged”
  19. 19. Meet the Superpatients Patients who extend science when all other options are gone
  20. 20. Superpatient: @DanaMLewis with @ScottLeibrand and the whole #OpenAPS #DIYPS #NightScout crowd
  21. 21. Superpatient: @DanaMLewis with @ScottLeibrand and the whole #OpenAPS #DIYPS #NightScout crowd
  22. 22. #DIYPS #WeAreNotWaiting (“Do-it-yourself Pancreas System”)
  23. 23. Better control than a working pancreas
  24. 24. Superpatients: Kristina Sheridan and daughter Kate
  25. 25. Kate Sheridan – nasty Lyme case •30 doctors •15 diagnoses •From star student to unable to read a single page
  26. 26. Kate’s view – at Oxford now “There are many patients out there who have far crazier stories … but who do not have the tools to share them. I am asking you to help us change that.”
  27. 27. Superpatient: @Doug_Lind_Say
  28. 28. Meet Kim Goodsell
  29. 29. These true stories demand a new paradigm of patient, or we will be planning from an obsolete model of reality
  30. 30. But how is this possible?? They don’t have the education!
  31. 31. But they have motivation, and focus, and now they have access to knowledge (which is empowering)
  32. 32. It is a profound shift in who has information that matters.
  33. 33. A Copernican shift.
  34. 34. 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.”
  35. 35. 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.”
  36. 36. THAT is a paradigm change for patient experience, empowerment, and engagement.
  37. 37. “A new scientific truth does not triumph by convincing its opponents and making them see the light, Max Planck Nobel Prize, 1918 “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, “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.”
  38. 38. You come to conferences so you will be a leader, not a dinosaur waiting to die.
  39. 39. Dave deBronkart Twitter: @ePatientDave dave@epatientdave.com Patient Experience, Empowerment, Engagement: A Business Leader’s View

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