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Failure to share data – both ways – makes medicine fall short. (NEHIMMSS)


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Edgy new angle on why it MATTERS whether a patient's health data gets to where it's needed: if it doesn't medicine will fall short of what it could have achieved. Who wants that?? Talk at New England HIMSS "education & social"

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Failure to share data – both ways – makes medicine fall short. (NEHIMMSS)

  1. 1. “e-Patient Dave” deBronkart Twitter: @ePatientDave Failure to share data – both ways – makes medicine fall short. 1
  2. 2. What happens when a marketer experiences healthcare as a dying person?
  3. 3. It all becomes very, very real especially the question “who gets to say what’s ‘valuable’ to me??”
  4. 4. ì Sir Francis Bacon English author, cour0er, & philosopher (1561 - 1626) © Copyright 2014 D. Z. Sands and D. deBronkart, All Rights Reserved Knowledge is power.
  5. 5. “People perform better when they’re informed better.”
  6. 6. “Data Liberación!” Todd Park Innovator Entrepreneur HHS Chief Technical Officer US Chief Technical Officer
  7. 7. founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
  8. 8. h#p://par) Participatory Medicine is a cooperative model of health care that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.) as integral to the full continuum of care. The “participatory” concept may also be applied to fitness, nutrition, mental health, end- of-life care, and all issues broadly related to an individual’s health. Society for Par0cipatory Medicine Community Advocacy Research Educa0on Community
  9. 9. The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 “Your shoulder will be fine … but there’s something in your lung”
  10. 10. Multiple tumors in both lungs Where’s This From??
  11. 11. PrimaryTumor: Kidney
  12. 12. E-Patient Activity 1: Researching my condition
  13. 13. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
  14. 14. Facing the Reaper My mother My daughter
  15. 15. After the shock you’re left with the question: What are my options? What can I do?
  16. 16. E-Patient Activity 2: “My doctor prescribed ACOR” (Now mostly moved to
  17. 17. 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 –  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. Question:
  20. 20. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
  21. 21. “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. Dr. Lindberg: 400 years
  22. 22. 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.
  23. 23. Physician adoption of new practices years after discovery It’s widely said that new practices aren’t adopted in medicine for 17 years. This paper suggests that’s just an average, and some standards aren’t fully adopted until much later. 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 Slide by Creative Commons Attribution / Share-Alike May be distributed with this license included
  24. 24. “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.
  25. 25. Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
  26. 26. Closed system Open network Transformation of Knowledge Access Slide by @ePatientDave 2015 Based on Engelen & Derksen, 2010
  27. 27. How about some fundamentals of information transfer??
  28. 28. “Liquidity” transforms what’s possible
  29. 29. Not liquid Liquid •  Moving it takes effort •  Slow and predictable •  Arrivals on unexplained “tracks” are suspicious •  Frictionless – controlling the flow takes effort •  Fast and unpredictable •  “Tracks” everywhere, free
  30. 30. ATale of Two Doctors (and their excellent books)
  31. 31. #1: Bob Wachter (aka “How we got into this mess and what to do next”) J
  32. 32. #2: Dr. EricTopol
  33. 33. “Situational Awareness” is vital – and there have been real changes in who CAN get at SA data
  34. 34. AliveCor: iPhone EKG 12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order” Feb 2014: OTC
  35. 35. Hugo Campos @hugooc My first year with the AliveCor February 8, 2013
  36. 36. #DIYPS & @DanaMLewis (“Do-it-yourself Pancreas System”
  37. 37. #DIYPS (“Do-it-yourself Pancreas System”
  38. 38. We demand a MEDICAL RECORDS SPIGOT!S t o p i n f o r m a t i o n b l o c k i n g N O W ! It’s all about ME, so it’s MINE! Take action:
  39. 39. Recommendations •  Full patient access - portals plus opennotes –  Engage patient stakeholders in thinking out workflows and testing usability, same as with clinicians •  Prioritise interop. •  Give us data spigots: leave the door open for organic innovation
  40. 40. I want a FHIR hose!
  41. 41. We perform better when we’re informed better.
  42. 42. But information alone doesn’t change behavior
  43. 43. Withings Withings Wi-Fi scale Fitness wristband & heart band
  44. 44. 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!
  45. 45. You know a movement is a social revolution when artists and musicians show up.
  46. 46. Regina Holliday’s “Walking Gallery of Healthcare”
  47. 47. October 2007December 2006 May 2009 2.8 e-PatientYears in Pictures
  48. 48. Zoe When does autonomy become appropriate?
  49. 49. “e-Patient Dave” deBronkart Twitter: @ePatientDave Failure to share data – both ways – makes medicine fall short. 69