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How “e-patients” can help healthcare achieve its potential

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Dinner meeting of the MIT Club of New Hampshire, March 2018.

Published in: Health & Medicine
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How “e-patients” can help healthcare achieve its potential

  1. 1. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Empowered, engaged, equipped, enabled: How “e-patients” can help healthcare achieve its potential
  2. 2. His “survivor mission” for us: Register to be an organ donor, no matter what.
  3. 3. 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
  4. 4. Medicine is in the best of times, the worst of times.
  5. 5. 1969
  6. 6. Classmate Jay Pollack ’72
  7. 7. The healthcare future, when Jay and I were born
  8. 8. Today: Medicine and population health are preventing lots of those deaths
  9. 9. 34 years from now: a truly unprecedented population profile
  10. 10. 2/3 of everyone who’s ever been 65 is alive today Population today: ~7.0 billion End of World War II: ~2.3 billion 11
  11. 11. And yet:
  12. 12. Lesson: Somehow, somewhere in there, the system’s structured to keep growing.
  13. 13. And yet:
  14. 14. “Amenable mortality”
  15. 15. a + b = ?
  16. 16. Lesson: The system is optimized around things other than getting the job done.
  17. 17. Our question tonight: How can YOU help healthcare achieve its potential when trouble hitsYOU?
  18. 18. Fundamental principle 1: “Patient” is not a third person word Your time will come.
  19. 19. You may be able to help. Fundamental principle 2: Medicine can’t achieve its potential if useful information is missing.
  20. 20. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled Doc Tom said, e-Patients are
  21. 21. March 18 @DrDannySands
  22. 22. 2007: My “Incidental Finding” Routine shoulder x-ray, Jan. 2, 2007 Your shoulder will be fine … but there's something in your lung
  23. 23. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
  24. 24. My doctor prescribed ACOR (Community of my patient peers)
  25. 25. 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
  26. 26. 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
  27. 27. Surgery & Interleukin worked
  28. 28. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
  29. 29. Donald Lindberg MD Director of the National Library of Medicine “If I read two journal articles every night, at the end of a year I’d be 400 years behind.” (2004) 2013 (NLM): •  2,200 articles are published every day •  Doctors must know 10,000 conditions •  Patients can focus only on their own.
  30. 30. Because of the Web, patients can connect to information and each other
  31. 31. Social media:“Information capillaries”
  32. 32. 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
  33. 33. I’m Alive Thanks to Precision Medicine … and Other Pa2ents © Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 40 Stage 3a NSCLC 05/2011 Stage 3b/ 4 10/2011 Metasta2c 09/2012 Clinician No Evidence of Disease since 12/31/2012 chemo- rad Pa2ent chemo rad clinical trial (crizo2nib for ROS1 NSCLC) EGFR, ALK neg Submit slides for gene panel Request pathology results Visit U of Colorado Hospital request ROS1/RET tests enroll in clinical trial ROS 1 pos 10-gene panel neg travel to site, take meds, labs/scans, track SEs Interact online with lung cancer pa=ents and follow research developments @JanetFD (Janet Freeman-Daily)
  34. 34. Cognitive dissonance sets in, and the mind seeks to resolve it “It’s because they’re MIT graduates.”
  35. 35. Kim Goodsell
  36. 36. Kim Goodsell
  37. 37. You know it’s a revolution when the artists and musicians show up.
  38. 38. #PinkSocks
  39. 39. Regina militant fist
  40. 40. The Walking Gallery ReginaHolliday.blogspot.com
  41. 41. Video: dave.pt/datasong
  42. 42. What you can do to help, #1: Check your family’s charts before there’s a crisis. All of them.
  43. 43. •  Up to 95% of medication lists were found to have mistakes •  ~90% of patients requested changes to their records. •  ~80% were accepted by the doctors •  Geisinger doctor: “If we don't have accurate data we can't take care of patients appropriately”
  44. 44. What you can do to help, #2: Ask your clinicians to do the “Human / Level” thing: share their screen
  45. 45. Best Prac*ce Mnemonics for EHR Use: “HUMAN” and “LEVEL” H Honor the “Golden Minute,” with first minutes tech-free U Use the (equilateral) triangle of trust M Maximize pa2ent interac2on A Acquaint yourself with pa2ent record, ideally before the visit N Nix the technology and keep eye contact (hands off keyboard) when pa2ent is discussing a sensi2ve topic L Let the pa2ent look on E Eye contact with pa2ent V Value the computer as a tool E Explain what you are doing as you do it L Log off and tell the pa2ent March 18 @DrDannySands @ePa2entDave Source: Permanente Federa2on 2004 c/o Larry Garber, MD, and Wei Wei Lee, MD
  46. 46. March 18 @DrDannySands
  47. 47. What you can do to help, #3: Ask for OpenNotes and OurNotes
  48. 48. OpenNotes.org What happens when patients see their doctors’ notes?
  49. 49. •  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
  50. 50. What you can do to help, #4: Know your hospitals’ safety scores
  51. 51. HospitalSafetyGrade.org
  52. 52. What you can do to help, #5: For elders: “Better Health While Aging” podcast
  53. 53. Dr. Leslie Kernisan Podcast & website “Practical information for senior health & family caregivers”
  54. 54. What you can do to help, #6: For all ages: Ask about “case managers.”
  55. 55. Nov 2016
  56. 56. Transformation of Knowledge Access Slide by @ePatientDave 2015 based on Engelen & Derksen 2010 at Closed system Open network Slide by @ePatientDave 2018 based on Engelen & Derksen 2010 at Current Reality Closed system Common perception
  57. 57. You may be able to help. Medicine can’t achieve its potential if useful information is missing.
  58. 58. “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Empowered, engaged, equipped, enabled: How “e-patients” can help healthcare achieve its potential

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