e-Patient Dave 20 minute talk at PwC 180 Health Forum, 2016.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Four Laws of
Transformation
andThree Diseases
(and some traps)

5. Equipped
Engaged
Empowered
Enabled”
DocTom said,
“e-Patients are

6. Four laws
and three diseases
(and some traps)

7. First law of transformation:
Patients are the ultimate stakeholder.
TRAP:They’re often left out of discussions.

9. Second law of transformation:
Patient is not a third person word.
Your time will come.

10. TRAP to avoid:
“We’ll all be patients someday”
Sorry! Wishful thinking.

11. Classic
Stage IV,
Grade 4
Renal Cell
Carcinoma
Illustration on
the drug company’s
web site
Median Survival:
24 weeks

13. How can this be??

14. Because of the Web, patients can
connect to information and each other

15. Third law of transformation:
We perform better
when we’re informed better.

16. Corollary:
It’s perverse to keep us in the dark
then call us ignorant.

17. Reality:
HUGE cultural resistance to autonomy.
We must fight back.

18. Halamka not one has requested

19. Patientsite 2

20. We say:“Gimme My DaM Data”
dave.pt/datasong

21. We demand a
MEDICAL
RECORD
SPIGOT!
It’s all about ME, so it’s MINE!
Take action: bit.ly/healthspigot

22. TRAP:
Objection:“Fine for you Dave,
but my patients aren’t like you”

24. Financially too:
It’s perverse to keep us uninformed
then conclude we’re ignorant.

25. Disease 2

26. “We don’t know.Ask your plan.”

27. “We don’t know.Ask your plan.”
“We don’t know.Ask the doctor.”

30. Social
media
gave me
an option
nobody
had
mentioned

32. clearhealthcosts

33. clearhealthcosts
Fact:
Women manage most healthcare.
Ask them what they need.

34. Law 2 redux:
“Your time will come”:
A very personal
health behaviors story
(disease #3)

35. 2009

36. November 2014

37. I know: Gadgets!!
Withings Wi-Fi scale
Fitness wristband & heart band

38. I know: Gadgets!!
Withings Wi-Fi scale
Fitness wristband & heart band
LESSON:
Information alone doesn’t
change behavior

39. I know: Gadgets!!
Withings Wi-Fi scale
Fitness wristband & heart band
YMCA Diabetes Prevention Program
(food training & physical activity)
MyFitnessPal diet tracking app
Strong support from my spouse

40. OMG, I’m a runner now
(at 65!)

41. p.s.: My providers can’t see this in their computers!
OMG, I’m a runner now
(at 65!)

42. TRAP:
The greatest cultural block
to e-patients being welcomed:

43. TRAP:
The greatest cultural block
to e-patients being welcomed:
A false sense of certainty.
(“Trust authority, not others”)

45. 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
Richard Smith
25 year editor of the BMJ

46. Marcia
Angell
Former NEJM
editor-in-chief

47. Richard Horton
Current editor-in-chief,
The Lancet
April 2015

48. If you’re the one
who’s in trouble,
it matters
whether it’s reliable!

50. @AaronColeman
on medium.com

51. @AaronColeman
on medium.com

52. The crisis in certainty:
Who peer reviews this stuff??

53. And now,
the Holy Grail
for finding value:

54. To see the future,
don’t ask incumbents.

55. (The fourth law of transformation)
To see the future,
don’t ask incumbents.
Ask the people with the problem.

56. The old (1871): Oliver Wendell Holmes
“Your patient has no more
right to all the truth you
know than he has to all the
medicine in your saddle-bags.
He should get only just so
much as is good for him.”

57. Current information-powered
e-patient reality:
Hugo Campos and
Dana Lewis

58. Hugo Campos wants his ICD data

59. Kardia (née “AliveCor”):
Smartphone ECG

61. #OpenAPS & @DanaMLewis
(Open Source Artificial Pancreas System)

62. “Quantified Self” #OpenAPS
Public Health conference
San Diego, May 18 (n=1)*59(n=1)*59
November 2: *142

63. Many are better controlled
than we with a working pancreas are

64. “But culture change
is HAAARRRRD.”

68. “A new scientific truth
does not triumph
by convincing its opponents
and making them see the light,
Max Planck Nobel Prize, 1918

69. “A new scientific truth
does not triumph
by convincing its opponents
and making them see the light,
but rather because
its opponents eventually die,
Max Planck Nobel Prize, 1918

70. “A new scientific truth
does not triumph
by convincing its opponents
and making them see the light,
but rather because
its opponents eventually die,
and a new generation grows up
that is familiar with it.”
Max Planck Nobel Prize, 1918

72. Personally,
I love medicine.

74. We demand a
MEDICAL
RECORD
SPIGOT!
It’s all about ME, so it’s MINE!
Take action: bit.ly/healthspigot