Speech to the New Hampshire Hospital Association's annual meeting at the Mount Washington Resort, Sept 2016.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Patients as Partners: the Power
of Patient Engagement

2. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Are you ready to partner
with empowered, engaged
“e-patients”?

3. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Achieving population health
is sure to bring you more of us.

4. How I came to be here
• High tech marketing
• Data geek; tech trends; automation
• 2007: Cancer discovery & recovery
• 2008: E-Patient blogger
• 2009: Public Speaker
• 2010: full time
• 2011: international

6. “Patient” is not
a third person word.
Fundamental Principle #1:
Your time will come.

7. The right of a desperate person
to try to save themselves
(or their family)
Fundamental Principle #2:

8. Everyone can perform better
when they’re informed better.
Fundamental Principle #3:

9. It’s an error
to keep people uninformed
Corollary:
then think “they know nothing”

10. Compliance
(Whose goal is it, anyway?)

11. e-Patients.net founder
Tom Ferguson MD
1944-2006
Equipped
Engaged
Empowered
Enabled”
Doc Tom said,
“e-Patients are

13. Pt of future

15. Me? An indicator of the future??
• Who’s getting online:
– 1989: Me (CompuServe sysop)
– 2009: 83% of US adults (Pew)
• Who’s romancing
online:
– 1999: I met my wife (Match.com)
– 2009: One in eight weddings
in the U.S. met online
– 2011: One in five couples
met online

16. The Engaged e-Patient
12 items in my pre-appointment “agenda” email

17. 2007: My “Incidental Finding”
Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder
will be fine …
but there's
something
in your lung”

18. Multiple tumors in both lungs

19. PrimaryTumor: Kidney

20. E-Patient Activity 1:
Researching my condition

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

22. Facing the Reaper

23. My mother

24. My daughter

25. My doctor prescribed ACOR
(Community of my patient peers)

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. After the shock
you’re left with the question:
What are my options?
What can I do?

28. Get engaged.
Get it in gear.
Do everything you can.

29. Surgery & Interleukin worked

31. How can it be
that the most useful
and relevant and
up-to-the-minute information
can exist outside of
traditional channels?

32. 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:
• 2,200 articles are published every day
• Doctors must know 10,000 conditions
• Patients can focus only on their own.

33. Because of the Web, Patients Can
Connect to Information and Each Other

34. Who steered me
to this community?
My trusted
authority.

35. “We are the most credible
source”
Nancy Schlichting

36. People can perform better
when they’re
informed better.

37. So, what IS this
empowerment thing,
really??

38. Disempowered:
(aka powerless)
“There’s nothin’ I can do
about this …”

39. Empowerment
“Increasing the capacity
of individuals or groups

40. Empowerment
“Increasing the capacity
of individuals or groups
to make choices [about what they want]

41. Empowerment
“Increasing the capacity
of individuals or groups
to make choices [about what they want]
and to transform those choices
into desired actions & outcomes”
World Bank, 2002

42. What do we mean by
Engaged?
Participating?

43. Sherry Arnstein, 1969
Arnstein’s Ladder of Citizen Participation

44. Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Sli
deshows/Public%20Policy%20Conflict.ppt

45. Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Sli
deshows/Public%20Policy%20Conflict.ppt

46. Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Sli
deshows/Public%20Policy%20Conflict.ppt

47. As gorgeously
designed

48. As gorgeously
designed
What they would
have asked for

49. Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Sli
deshows/Public%20Policy%20Conflict.ppt

50. Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Sli
deshows/Public%20Policy%20Conflict.ppt

51. Dutch IVF program
had an insane idea
• Give patient couples
a wiki, and six months to
talk amongst themselves.
The promise:
• “We’ll give you anything
you decide – your top ten
choices. Unedited.”

52. Dutch IVF program
had an insane idea
• Give patient couples
a wiki, and six months to
talk amongst themselves.
The promise:
• “We’ll give you anything
you decide – your top ten
choices. Unedited.”

53. Top things IVF patients asked for
• I want insurers to reimburse six attempts.
• I want insurance companies to only count it as an attempt if the
embryo gets started.

54. Top things IVF patients asked for
• I want insurers to reimburse six attempts.
• I want insurance companies to only count it as an attempt if the
embryo gets started.
• I want empathy from my doctor,
not just technical or financial information.

55. Top things IVF patients asked for
• I want insurers to reimburse six attempts.
• I want insurance companies to only count it as an attempt if the
embryo gets started.
• I want empathy from my doctor,
not just technical or financial information.
• I want separate waiting rooms
for families who’ve conceived

56. 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.”

57. When does
autonomy
become
appropriate?

58. Let’s meet two
real e-patients:
Hugo Campos and
Dana Lewis

59. Hugo Campos wants his ICD data

60. Patient Experience: periodic printouts

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

62. Hugo Campos
@hugooc
HugoOC@gmail.com
My first year with
the AliveCor
February 8, 2013

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

65. “Quantified Self” #OpenAPS
Public Health conference
San Diego, May 18 (n=1)*59(n=1)*59
August 13: *103

66. #OpenAPS users are tweeting

67. When assets digitize,
what’s possible
changes fast.
Fundamental Principle:

68. Knowledge
is
power

69. Knowledge
is
power

70. Knowledge
enables
power

71. If you live long enough
the future changes.

72. My college classmate Jay

73. The future
when Jay and I were born

74. Today:
Medicine and population health
are preventing most deaths

75. 34 years from now:
a truly unprecedented
population profile

76. Half of everyone who’s
ever been 65 is alive today
Population today: ~7.0 billion
End ofWorldWar II: ~2.3 billion
76

77. What an opportunity!

78. Are you ready?

80. Geriatrics:
“The art and science
of modifying medicine
so that it works better
for older people
and for their families”

83. A very personal
health behaviors story

84. Warning: this is a
NO GUILT
ZONE!!

85. I’ve tried it. Guilt is
USELESS!

87. November 2014

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

89. 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

90. p.s.: My providers can’t see this in their computers!
OMG, I’m a runner now

92. At dx: Nov 2014, 231#:
Sept 2015, 203#:
August 5, 2016:
• Labcorp: 5.7 (still pre)
• Quest: 5.5 (not pre??)
The questionable fruits of compliance
5.9 (??!?)
5.8

93. THIS is what happens
in chaotic complexity

94. OpenNotes
What happens
when patients see
their doctors’
notes?

95. O

97. • 99% of patients wanted to continue
• 17-26% of doctors 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

98. October 2007December
2006
May 2009
2.8 e-PatientYears in Pictures

100. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Are you ready to partner
with empowered, engaged
“e-patients”?

101. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Population health
is sure to bring you more of us.