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.

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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  • 1. “e-Patient Dave” deBronkart Twitter: @ePatientDave Let Patients Help Decide What Matters facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com
  • 2. “It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
  • 3. Patients are the ultimate stakeholder Yet they’re often excluded from discussing ANYthing
  • 4. What Glover observed was not caused by modern insurance
  • 5. What could be said that would make any difference? To whom would you say it?
  • 6. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
  • 7. “E” is not a new idea •  Doctor Spock’s Baby and Child Care (1946)
  • 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. Who gets to say what’s important??
  • 10. Who gets to say which outcomes are important??
  • 11. Who gets to say which outcomes should be goals?
  • 12. Who gets to declare which endpoint we measure?
  • 13. Who gets to say what’s in the patient’s best interest?
  • 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. 19
  • 16. “How can patients participate if they can’t see what I see?” – Dr.Danny Sands
  • 17. The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 “Your  shoulder      will  be  fine  …      but  there’s        something        in  your  lung”  
  • 18. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
  • 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. Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm 24
  • 21. Keeping patients in the dark, #1 IL-2?
  • 22. Keeping patients in the dark, #2 Open surgery vs. laparoscopic
  • 23. Case: Elyse Chapman
  • 24. Case: Elyse Chapman
  • 25. Keeping patients in the dark, #3 Option: Watchful Waiting
  • 26. Can you keep someone in the dark if you don’t KNOW what you’re not telling them?
  • 27. Keeping patients in the dark, #4 Vaginal hysterectomy
  • 28. Keeping patients in the dark, #5 IL-2 (again)
  • 29. What’s changed since Arrow’s day?
  • 30. Problem: Patients may not find value in all the technical details
  • 31. (In other words, to them, the discussion wasn’t patient centered)
  • 32. “Ultimately, it turned out to be the trade-off between peeing better and sex.”
  • 33. “And when it was stated in those terms, SDM flowed into the conversation.”
  • 34. Let patients help say which outcomes are important
  • 35. Clarity is power.
  • 36. If the data’s unclear let’s MAKE it clear Like other industries do.
  • 37. Thomas Goetz, Wired
  • 38. Thomas Goetz, Wired “It’s time to redesign medical data”
  • 39. People perform better when they’re informed better.
  • 40. It’s perverse to keep people in the dark and call them ignorant Corollary:
  • 41. “My patients aren’t like that.” “They aren’t asking for this.” Objection:
  • 42. Urgency: The Demographic Crunch
  • 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. 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. My classmate Jay
  • 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. Let Hippies Help
  • 48. Institute of Medicine – Sept 2012 Major New Report:“Best Care at Lower Cost”
  • 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. 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. William Gibson “The future is here – it’s just not evenly distributed yet”
  • 52. “e-Patient Dave” deBronkart Twitter: @ePatientDave Let Patients Help Decide What Matters facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com