Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)

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30 minute talk at the Dartmouth Summer Institute on Informed Patient Choice. Very unusual talk - almost nothing about my cancer, lots about issues of who gets to say what's important.

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Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide What Matters)

  1. 1. “e-Patient Dave” deBronkart Twitter: @ePatientDave Let Patients Help Decide What Matters facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com
  2. 2. “It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
  3. 3. Patients are the ultimate stakeholder Yet they’re often excluded from discussing ANYthing
  4. 4. What Glover observed was not caused by modern insurance
  5. 5. What could be said that would make any difference? To whom would you say it?
  6. 6. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
  7. 7. “E” is not a new idea •  Doctor Spock’s Baby and Child Care (1946)
  8. 8. “E” is not a new idea •  Doctor Spock’s Baby and Child Care (1946) •  Our Bodies, Ourselves (1973) “We weren’t encouraged to ask questions, but to depend on the so-called experts,” Hawley told Women’s eNews. “Not having a say in our own health care frustrated and angered us.We didn’t have the information we needed, so we decided to find it on our own.”
  9. 9. Who gets to say what’s important??
  10. 10. Who gets to say which outcomes are important??
  11. 11. Who gets to say which outcomes should be goals?
  12. 12. Who gets to declare which endpoint we measure?
  13. 13. Who gets to say what’s in the patient’s best interest?
  14. 14. Paternalistic caring “No, honey – you don’t know what you need.” “I’ll take care of you.” Sensible – up to a point “I’ll decide for you.”
  15. 15. 19
  16. 16. “How can patients participate if they can’t see what I see?” – Dr.Danny Sands
  17. 17. The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 “Your  shoulder      will  be  fine  …      but  there’s        something        in  your  lung”  
  18. 18. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
  19. 19. ACOR members 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
  20. 20. Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm 24
  21. 21. Keeping patients in the dark, #1 IL-2?
  22. 22. Keeping patients in the dark, #2 Open surgery vs. laparoscopic
  23. 23. Case: Elyse Chapman
  24. 24. Case: Elyse Chapman
  25. 25. Keeping patients in the dark, #3 Option: Watchful Waiting
  26. 26. Can you keep someone in the dark if you don’t KNOW what you’re not telling them?
  27. 27. Keeping patients in the dark, #4 Vaginal hysterectomy
  28. 28. Keeping patients in the dark, #5 IL-2 (again)
  29. 29. What’s changed since Arrow’s day?
  30. 30. Problem: Patients may not find value in all the technical details
  31. 31. (In other words, to them, the discussion wasn’t patient centered)
  32. 32. “Ultimately, it turned out to be the trade-off between peeing better and sex.”
  33. 33. “And when it was stated in those terms, SDM flowed into the conversation.”
  34. 34. Let patients help say which outcomes are important
  35. 35. Clarity is power.
  36. 36. If the data’s unclear let’s MAKE it clear Like other industries do.
  37. 37. Thomas Goetz, Wired
  38. 38. Thomas Goetz, Wired “It’s time to redesign medical data”
  39. 39. People perform better when they’re informed better.
  40. 40. It’s perverse to keep people in the dark and call them ignorant Corollary:
  41. 41. “My patients aren’t like that.” “They aren’t asking for this.” Objection:
  42. 42. Urgency: The Demographic Crunch
  43. 43. Problem(?) Chronic Disease Epidemic CDC  (2004)  Ten  Great  Public  Health  Achievements  in  the  20th  Century  &  Leading  Causes  of  Death   Jones  (2012)  The  Burden  of  Disease  and  the  Changing  Task  of  Medicine.  NEJM   Used  with  permission  of  John  O.  Moore  MD,  PhD          newmed.media.mit.edu  
  44. 44. Problem(?) Chronic Disease Epidemic CDC  (2004)  Ten  Great  Public  Health  Achievements  in  the  20th  Century  &  Leading  Causes  of  Death   Jones  (2012)  The  Burden  of  Disease  and  the  Changing  Task  of  Medicine.  NEJM   Used  with  permission  of  John  O.  Moore  MD,  PhD          newmed.media.mit.edu   52
  45. 45. My classmate Jay
  46. 46. Half of everyone who’s ever been 65 is alive today Population today: ~7.0 billion End of World War II: ~2.3 billion
  47. 47. Let Hippies Help
  48. 48. Institute of Medicine – Sept 2012 Major New Report:“Best Care at Lower Cost”
  49. 49. Yes, the IOM itself 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.
  50. 50. June 11, 2014 Announced – •  Patient advisory panel •  Patient peer review of research papers •  Authors are to document how they involved patients in defining the question and outcome measures www.bmj.com/content/348/bmj.g3726
  51. 51. William Gibson “The future is here – it’s just not evenly distributed yet”
  52. 52. “e-Patient Dave” deBronkart Twitter: @ePatientDave Let Patients Help Decide What Matters facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com

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