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"Think, think, think": e-Patient Dave address to ECPC annual meeting

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Expanded version of a short panel presentation on the subject of mHealth. My point was that mHealth has meaning only in the larger context of an important reality: the best quality care depends on having the best information, so THAT is what we need to be thinking about.

Published in: Health & Medicine
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"Think, think, think": e-Patient Dave address to ECPC annual meeting

  1. 1. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Amazing changes in who has information are giving patients power 1
  2. 2. How I came to be here •  Business: 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
  3. 3. Institute of Medicine – Sept 2012 Major New Report:“Best Care at Lower Cost”
  4. 4. The IOM 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.
  5. 5. When the center of a system changes, everything in the system may need to be rebalanced and rethought
  6. 6. The main question in every medical case: “What is the best thing to do?”
  7. 7. The answer depends on information and judgment.
  8. 8. Information technology is changing and patients have a voice in how to decide.
  9. 9. ì
  10. 10. mHealth puts knowledge in our pockets. It changes what patients are able to do. Caution: it’s starting to change what patients WANT to do.
  11. 11. It builds capacity.
  12. 12. Change #1: How does information move to the point of need?
  13. 13. Transformation of Knowledge Access “Information artery” Subject to clogs and delays The point of need
  14. 14. “E-Patient White Paper”
  15. 15. “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. Even when lives are at stake. Dr. Lindberg: 400 years 2013: 1100 years
  16. 16. Social Media is like “information capillaries”
  17. 17. Closed system Open network Transformation of Knowledge Access
  18. 18. Change #2: Where does useful information come from?
  19. 19. Kardia (née “AliveCor”): Smartphone ECG
  20. 20. Hugo Campos @hugooc HugoOC@gmail.com My first year with the AliveCor February 8, 2013
  21. 21. #DIYPS & @DanaMLewis (“Do-it-yourself Pancreas System”
  22. 22. #DIYPS (“Do-it-yourself Pancreas System”
  23. 23. “Quantified Self” #OpenAPS Public Health San Diego, May 18 (n=1)*59(n=1)*59 June 3, White House: *75
  24. 24. Withings Withings Wi-Fi scale Fitness wristband & heart band YMCA Diabetes Prevention Class (food training & physical activity) MyFitnessPal diet tracking app Strong spousal support My doctors can’t see this in their computers!
  25. 25. p.s.: My doctors can’t see this in their computers! OMG, I’m a runner now
  26. 26. Change #3: How do we decide whether it is reliable?
  27. 27. Transformation of Knowledge Access “Information artery” Subject to clogs and delays The point of need and pollution
  28. 28. After 30 years of practicing peer review and 15 years of studying it experimentally, I’m unconvinced of its value. Evidence on the upside of peer review is sparse, whereas evidence on the downside is abundant. Most of what appears in peer reviewed journals is scientifically weak. Richard Smith, 25 year editor of the British Medical Journal, 2009
  29. 29. Change #4: Who decides which factors are important? Who can say “We forgot to think about this”
  30. 30. June 11, 2014 •  Patient advisory panel •  Patient peer review of research papers •  Authors are to document how they involved patients in defining the question and outcome measures
  31. 31. “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.
  32. 32. impact on patients è è à à à à à current patient involvement è trial management, e.g. consent, patient information leaflets, trial adherence patient recruitment e.g. providing information on clinical trials, advertising trials clinical trial design Dr. Bettina Ryll – researcher and family caregiver When should we bring patients into the clinical trials process? 6/5/16 clinical question/ problem Make sure patients are doing things right à à à ß ß ß Make sure researchers are doing the right thing © Bettina Ryll MD/PhD
  33. 33. September 29, 2014
  34. 34. September 29, 2014
  35. 35. •  <meta name="article.headline” content=” “In a dramatic shift, patients are helping researchers design clinical trials of new drugs” /> Culture clash:What they wrote
  36. 36. Culture clash: In print
  37. 37. Change #5: Our understanding of what a disease is!
  38. 38. Ignaz Semelweiss (1818-1865) “Despite various publications of results where hand-washing reduced mortality to below 1%, Semmelweis’s observations conflicted with the established scientific and medical opinions of the time and his ideas were rejected by the medical community…
  39. 39. Microbes Koch’s postulates 125 years ago
  40. 40. Cancer Broken DNA 25 years ago
  41. 41. Personalized medicine Eric Dishman of Intel •  Kidney cancer age 19 –  Prognosis: 9 months (wrong) •  2010: genome sequenced –  Took seven months •  “Your cancer is in your kidney but it acts like pancreatic. New chemo.” •  Three months later: clear! Personalized medicine Eric Dishman of Intel National Institutes of Health
  42. 42. Notice: It’s clear that patients are not setting the priorities here
  43. 43. Change #6: After you learn a medical fact, how long does it continue to be true?
  44. 44. 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.
  45. 45. Reported June 2015
  46. 46. Reported June 2015
  47. 47. “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, Nobel Prize winner Max Planck and a new generation grows up that is familiar with it.”
  48. 48. Change #7: Who is capable of making these decisions about priorities?
  49. 49. Paternal care “No, honey – you don’t know what you need.” “I’ll take care of you.” It’s important – up to a point “I’ll decide for you.”
  50. 50. Zoe When does autonomy become appropriate?
  51. 51. Empowerment An empowering approach treats patients as co-producers with authority and control at the lowest possible level.
  52. 52. And that’s just a start. 1.  How information moves to the point of need 2.  Where useful information arises 3.  How do we decide whether it’s reliable? 4.  How do we decide what to measured? 5.  Our understanding of what a disease is! 6.  How long does an answer stay stable? 7.  Who is capable of deciding all this? 8.  … to be continued
  53. 53. The main question in every medical case: “What is the best thing to do?”
  54. 54. The answer depends on information and judgment.
  55. 55. mHealth puts knowledge in our pockets. It changes what patients are able to do. It’s starting to change what patients WANT to do.
  56. 56. The IOM 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.
  57. 57. @MightyCasey, e-patient
  58. 58. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Amazing changes in who has information are giving patients power 79

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