1. JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
dave@epatientdave.com Skype: ePatientDave
Let Patients Help
Heal Healthcare

2. JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
dave@epatientdave.com Skype: ePatientDave
Let Patients Help
DefineWhat Care Is

3. “I want to note especially
the importance of the resource
that is most often under-
utilized in our information
systems – our patients”
Charles Safran MD, Beth Israel Deaconess
quoting his colleague,Warner Slack MD
Testimony to the HouseWays & Means
subcommittee on health, 2004

5. How I came to be here
• High tech marketing
• Data geek; tech trends; automation
• 2007: Cancer discovery & recovery

6. 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 Speaker
• 2010: full time
• 2011: international

7. I do slogans.

8. I do slogans.

9. I do slogans.

10. I do slogans.

11. I do slogans.

12. JAMIA, 1997

13. e-Patients.net founder
Tom Ferguson MD
1944-2006

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

15. JAMIA, 1997

16. on.TED.com/Dave

17. on.TED.com/Dave

18. JAMIA, 1997
USMLE:
1989

20. I owe my well-being to
these USMLE victims:
Dr. David McDermott,
Oncologist 1991-2

21. I owe my well-being to
these USMLE victims:
Dr. David McDermott,
Oncologist 1991-2
Dr. Andrew Wagner,
Urologist/surgeon
1998, 1999, 2001

22. I owe my well-being to
these USMLE victims:
Dr. David McDermott,
Oncologist 1991-2
Dr. Andrew Wagner,
Urologist/surgeon
1998, 1999, 2001
Dr. Megan Anderson,
Orthopedic surgeon
1996

23. There’s a
thread
you follow

26. Me? An indicator
of the future??
• Who’s getting online:
– 1989: Me (CompuServe sysop)
– 2009: 83% of US adults (Pew)

27. 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

28. 2007: My “Incidental Finding”
Routine shoulder x-ray, Jan. 2, 2007
Your%shoulder%
%%will%be%fine%…%
%%but%there's%%
%%something%%
%%in%your%lung %

29. Classic
Stage IV,
Grade 4
Renal Cell
Carcinoma
Illustration on
the drug company's
web site

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

31. E-Patient Activity 2:
My doctor prescribed ACOR
(Community of my patient peers)

32. Surgery & Interleukin worked.
Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm

35. Question:

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

37. Because of the Web,
Patients Can Connect to Information
and Each Other (and other Providers)

38. If I read two journal articles every night,
at the end of a year I’d be 400 years behind.
It’s not humanly possible to keep up.
Dr. Lindberg: 400 years

39. The lethal lag time:
2-5 years
During this time,
people who might have benefitted can die.
Patients have all the time in the world
to look for such things.
The time it takes after successful research is completed
before publication is completed and the article’s been read.

40. Compare with
To Err is Human (98,000 deaths/yr Nov 1999)
Death by Googling:
Not.
(Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search)

41. It may be
more dangerous
not to google
your condition.

42. These conclusions
are no more anti-doctor
or anti-medicine
than Copernicus and Galileo
were anti-astronomer.
Patients can simply contribute
more today than in the past.

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#

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. There’s a
thread
you follow

48. Protecting
the public

49. • Patients used the PHR a mean of 42.1 times
during the 1-year intervention period.

50. • Patients used the PHR a mean of 42.1 times
during the 1-year intervention period.
• In the PHR group, the total proportion of eligible
preventive services received …

51. • Patients used the PHR a mean of 42.1 times
during the 1-year intervention period.
• In the PHR group, the total proportion of eligible
preventive services received ...
– increased from 24% at baseline to 40%
at the 12-month follow-up, whereas

52. • Patients used the PHR a mean of 42.1 times
during the 1-year intervention period.
• In the PHR group, the total proportion of eligible
preventive services received ...
– increased from 24% at baseline to 40%
at the 12-month follow-up, whereas
– it declined in usual care group, from 25% to 18%.

53. Because of the Web,
Patients Can Connect to Information
and Each Other (and other Providers)

59. Liquidity
transforms
what’s possible
because it
alters the availability
of a vital resource.

60. Not Liquid
• Moving it takes effort
• Slow and predictable
• Unexplained arrivals
are suspicious

61. Not Liquid Liquid
• Moving it takes effort
• Slow and predictable
• Unexplained arrivals
are suspicious
• Frictionless – controlling
the flow takes effort
• Fast and unpredictable
• “Tracks” everywhere, free

63. In the patient-
centered world,
who gets to say
what value is?
(In all other quality fields, quality is defined by the
ultimate consumer.
This is typically not done in healthcare,
which I think is a mistake.)

64. If the microscope’s happy
but the patient’s not,
has care been achieved?

65. If the microscope’s happy
but the patient’s not,
has care been achieved?
Has optimal care??

66. If the microscope’s happy
but the patient’s not,
has care been achieved?
Has optimal care??
Was the money well spent
for customer value?

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

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

69. 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.

70. 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.

71. 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

72. Note also:
in the patient’s view,
success is achievement
(not obedience)

73. Compliance
(Whose goal is it, anyway?)
Achievement!

76. Speaking of
the patient’s view…

77. ©

78. • 0: Haha! I'm not
wearing any pants!
©

79. • 0: Haha! I'm not
wearing any pants!
• 2: Awesome!
Someone just offered
me a free hot dog!
©

80. • 0: Haha! I'm not
wearing any pants!
• 2: Awesome!
Someone just offered
me a free hot dog!
• 4: Huh. I never knew
that about giraffes.
©

81. • 0: Haha! I'm not
wearing any pants!
• 2: Awesome!
Someone just offered
me a free hot dog!
• 4: Huh. I never knew
that about giraffes.
• 6: I'm sorry about your cat,
but can we talk about some-
thing else now? I'm bored.
©

82. • 0: Haha! I'm not
wearing any pants!
• 2: Awesome!
Someone just offered
me a free hot dog!
• 4: Huh. I never knew
that about giraffes.
• 6: I'm sorry about your cat,
but can we talk about some-
thing else now? I'm bored.
• 8: The ice cream I bought
barely has any cookie dough
chunks. I am disappointed.
©

83. • 0: Haha! I'm not
wearing any pants!
• 2: Awesome!
Someone just offered
me a free hot dog!
• 4: Huh. I never knew
that about giraffes.
• 6: I'm sorry about your cat,
but can we talk about some-
thing else now? I'm bored.
• 8: The ice cream I bought
barely has any cookie dough
chunks. I am disappointed.
• 10: You hurt my feelings
and now I'm crying!
©

84. ©

85. Protecting
the public

86. Can we measure…
Dissemination
of new knowledge?
Patients assume !
their clinicians know and use !
the best available methods. "

87. Physician adoption of new
practices years after discovery
The “17 years” thing
From A. Balas, Institute of Medicine, inYearbook of Medical Informatics 2000
Creative Commons Attribution / Share-Alike
May be distributed with this license included

88. Physician adoption of new
practices years after discovery
The “17 years” thing
From A. Balas, Institute of Medicine, inYearbook of Medical Informatics 2000
Flu vaccine, year 32:
55% doing it,
45% still not
Beta blockers, year 18:
62% doing it,
38% still not
Diabetic foot care, year 7:
20% doing it,
80% still not
Cholesterol, year 16:
65% doing it,
35% still not
Creative Commons Attribution / Share-Alike
May be distributed with this license included

89. From
The Fourth Paradigm
by Microsoft Research

90. Scurvy"
264!
years!"
From
The Fourth Paradigm
by Microsoft Research

91. Scurvy"
264!
years!"
From
The Fourth Paradigm
by Microsoft Research

93. Shortfalls:
RobynTamblyn’s data

94. Can we measure…
Accurate,
careful management
of health IT?

95. Pre-op:“At least you won’t be lopsided.”
“What do you mean?”
“You’re getting a bilateral mastectomy.”
“No I’m not!”
“That’s what came to us on this paper.”

97. Can we measure…
Good communication
skills with the
computer involved?

98. People perform better
when they’re
informed better.

99. It’s perverse
to keep people
in the dark
and call them ignorant
Corollary:

100. “How can patients participate if they can’t
see what I see?” – Dr.Danny Sands

101. Can we measure…
Ability to help
patients take
advantage of
available data?

103. • 99% of patients wanted to continue"

104. • 99% of patients wanted to continue"
• 17-26% of docs preferred not to…"
– But when given the chance to stop, none did"

105. • 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"

106. “My patients
aren’t like that.”
“They aren’t
asking for this.”
Can we be sure
we don’t underestimate?

110. Congrats:
Fewer neckties,
more X

112. Next step:
Add
anasouptics!

117. There’s a
thread
you follow

118. Protecting
the public

119. 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.”

120. Nothing you do
can stop time’s
unfolding.

121. You don’t ever
let go of the thread.

122. Please

123. JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
dave@epatientdave.com Skype: ePatientDave
Let Patients Help
Heal Healthcare

124. JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
dave@epatientdave.com Skype: ePatientDave
Let Patients Help
DefineWhat Care Is