This document discusses how engaged e-patients can help improve healthcare. It describes the journey of "e-Patient Dave" from being diagnosed with stage IV kidney cancer in 2007 to becoming a full-time advocate for engaged patients and participatory medicine. It outlines how e-patients conduct their own research, connect with online communities, track their own health data, and share information - all of which allows them to become better informed and make more collaborative decisions with providers. The document argues that e-patients are a valuable healthcare resource and that the future of healthcare will be more patient-centered when it engages and empowers patients.

1. JAMIA, 1997
e-Patients Can Help
Improve Healthcare
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
© e-Patient Dave
© e-Patient Dave
dave@epatientdave.com Skype: ePatientDave
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2. How I came to be here
• High tech marketing
• Data geek; tech trends; automation
• 2007: Cancer discover & recovery
• 2008: E-Patient blogger
• 2009: Participatory
Medicine, Public Speaker
• 2010: full time
© e-Patient Dave
• 2011: international
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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 House Ways & Means
subcommittee on health, 2004
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4. Foundation Principles
• Patient is not a third person word
– Your time will come
– It’s a collective noun.
• Patients are the ultimate stakeholder
– Yet they’re often omitted from planning the future
• A pivotal force:The urge to care
for our children and elders
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5. Doc Tom said, e-Patients.net founder
“e-Patients are Equipped
Tom Ferguson MD
Engaged
1944-2006
Empowered
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Enabled”

6. JAMIA, 1997
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7. Pt of future
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8. © e-Patient Dave
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9. Me? An indicator • Who’s getting online:
– 1989: Me (CompuServe sysop)
of the future?? – 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
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10. The Engaged Patient
12 items in my pre-appointment “agenda” email
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11. The Incidental Finding
Routine shoulder x-ray, Jan. 2, 2007
“Your
shoulder
will
be
fine
…
but
there’s
something
in
your
lung”
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12. Multiple tumors in both lungs
Where’s This From??
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13. Primary Tumor: Kidney
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14. E-Patient Activity 1:
Researching my condition
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15. Classic
Stage IV,
Grade 4
Renal Cell
Carcinoma
Illustration on
the drug company’s
web site
Median Survival:
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24 weeks
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16. Facing the Reaper
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17. My mother
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18. My daughter
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19. After the shock
you’re left with the question:
What are my options?
What can I do?
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20. Get engaged.
Get it in gear.
Do everything you can.
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21. E-Patient Activity 2:
“My doctor prescribed ACOR”
(Community of my patient peers)
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22. 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
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23. E-Patient Activity 3:
Reading (and sharing)
my hospital data online
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24. E-Patient Activity 4:
My own social support network
(CaringBridge.org - family and friends - journal & guestbook)
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25. E-Patient Activity 5:
Tracking my data
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26. Surgery & Interleukin worked.
Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
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27. Nice curve!
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28. Question:
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29. How can it be
that the most useful
and relevant and
up-to-the-minute information
can exist outside of
traditional channels?
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30. Dr. Lindberg: 400 years
“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.
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31. © e-Patient Dave
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32. The lethal lag time:
2-5 years
The time it takes after successful research is completed
before publication is completed and the article’s been read.
During this time,
people who might have benefitted can die.
Patients have all the time in the world
to look for such things.
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33. Because of the Web,
Patients Can Connect to Information
and Each Other (and other Providers)
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34. Death by Googling:
Not.
(Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search)
Compare with
- “To Err is Human” (98,000 deaths/yr Nov 1999)
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35. “It may be
more dangerous
not to google
“your condition.”
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36. © e-Patient Dave
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37. What if his family
had googled “splenectomy”?
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38. What if the care team
had shared the care plan?
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39. Abington Memorial created one.
(It’s just an EMR report)
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40. © e-Patient Dave
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41. Seven Preliminary
Conclusions (in Chapter 2)
1. e-Patients have become valuable healthcare resources and providers should
recognize them as such
2. The art of empowering patients is trickier than we had thought
3. We have underestimated patients’ ability to provide useful online resources
4. We have overestimated the hazards of imperfect online health information
5. Whenever possible, healthcare should take place on the patient’s turf.
6. Clinicians can no longer go it alone
7. The most effective way to improve healthcare is to make it more collaborative
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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.
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43. E-Patient
White
Paper
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44. And finally:
recognition
from the
establishment
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45. Institute of Medicine – Sept 2012
Major New Report: “Best Care at Lower Cost”
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46. 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
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care team.

47. JAMIA, 1997
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48. “How can patients participate if they can’t
see what I see?” – Dr. Danny Sands
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49. Lesson learned:
People perform better
when they’re
informed better.
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50. Corollary:
It’s perverse
to keep people
in the dark
and call them ignorant
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51. VA’s “Blue Button” 1 million
2012:
(and DoD & Medicare) + Automatic!
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52. Informed
Medical
Decision
Making
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53. The Dartmouth Atlas of
Practice Variation
Prostate treatment rates, by region
Trans-urethral resection Radical prostatectomy
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54. Remedy:
Shared Decision
Making (SDM)
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55. Informed
Consent
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56. Informed
Choice
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57. Problem:
Patients may not
find value in all the
technical details
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58. (In other words,
to them, the
discussion wasn’t
patient centered)
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59. “Ultimately,
it turned out
to be the
trade-off
between
peeing better
and sex.”
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60. “And when it
was stated
in those terms,
SDM flowed
into the
conversation.”
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61. BREAK
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62. 2.8 e-Patient Years in Pictures…
December 2006 October 2007 May 2009
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63. © e-Patient Dave
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64. © e-Patient Dave
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65. You know
it’s a revolution
when…
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66. How a kidney cancer wife
found the info she needed
• No insurance;
no treatment. Then:
• Three bad hospitals;
no help. Then:
• A friend said
“I know a guy...
on Twitter”
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67. © e-Patient Dave
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68. © e-Patient Dave
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69. The Walking Gallery
ReginaHolliday.blogspot.com
Regina Holliday’s
Medical Mural Advocacy Project
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70. Information makes a difference.
© e-Patient Dave
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71. © e-Patient Dave
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72. © e-Patient Dave
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73. “Data Liberación”
Todd Park
Innovator
Entrepreneur
HHS Chief Tech Officer
US Chief Tech Officer
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74. Case Study #3:
Hugo Campos wants his ICD data
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75. © e-Patient Dave
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76. Doctor Experience
Full,
unrestricted
& convenient
access.
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77. Patient Experience
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78. Activity $99
Fitbit
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79. Blood Pressure $129
Withings BP Monitor
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80. Weight $159
Withings WiFi Scale
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81. Sleep $149
Zeo Sleep Manager
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82. Implanted
Cardiac
Defibrillator
$30,000
No data
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83. © e-Patient Dave
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84. Raw data
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85. A patient to her doctor:
(Rhode Island Quality Institute)
“You make me sign a consent form
to SHARE my data.
You ought to ask my consent
to HOARD it.”
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86. Objection:
“My patients
aren’t like that.”
“They aren’t
asking for this.”
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87. © e-Patient Dave
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88. Web 2.0: “When the web began to harness
the intelligence of its users.” – Tim O’Reilly
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89. Disempowered:
Shrugs;
“There’s nothin’
I can do…”
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90. Empowered:
Self-aware –
you know what you want
Willing & able to
© e-Patient Dave
act on it
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91. Engaged:
Thinking; learning;
acting; interacting
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92. Disengaged:
Passive; receiving.
A car in a
car wash.
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93. How to start?
Here’s the
magic incantation
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94. “I’m the kind of patient
who likes to understand
as much as I can
about my health.”
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95. “Could I ask
some questions?”
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96. Obstacle to adoption:
“Patients will
flood us with
time-wasting
questions.”
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97. OpenNotes
What happens
when patients see
their doctors’
notes?
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98. © e-Patient Dave
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99. Announced this past Monday
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100. © e-Patient Dave
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101. © e-Patient Dave
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102. • 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
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103. Obstacle to adoption:
“But patients
don’t understand
this stuff.”
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104. If the data’s unclear
let’s MAKE it clear
Like other industries do.
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105. Thomas Goetz, Wired
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106. Thomas Goetz, Wired
“It’s time to redesign medical data”
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107. Same data –
better software.
Information: clearer.
Consumer:
informed, enabled.
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108. Psoas muscle
(My kidney tumor was encroaching on it) my rendering on VisibleBody.com
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109. Why not “Google Earth for my body”?
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110. Really?
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111. OsiriX
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112. VeHU:
Have you looked in your medical record?
Do you know if it has mistakes?
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113. Dr. Eric Topol
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114. iPhone EKG??
12/3/12:
“FDA clears iPhone heart
monitor, doctors can pre-order”
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115. Who owns the data?
My view (on CafePress.com)
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116. A patient to Laura Adams:
(Rhode Island Quality Institute)
“You make me sign a consent form
to SHARE my data.
You oughta ask my consent
to HOARD it.”
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117. Health on the Internet:
Separating the Gold
from the Garbage
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118. Nov. 2007:
This googling patient
was a nightmare
(Title should have been
“When the patient is a
yahoo”!)
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119. o
Feb. 2010:
Sites like ACOR
PatientsLikeMe:
patients are creating
value by connecting
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120. Jan. 2011:
Googling patient
helps doc find
correct diagnosis
more quickly
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121. http:// bit .ly / gold from garbage
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122. House addressing his residents:
“OK, so you’re out of ideas!
So??”
“You think the stuff you
learned four years ago
is all there is??”
“You think nothing new
has come up since then??”
“I know you’re busy.
Have you asked the family
if they can dig anything up?”
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123. “Shift Index”
“We are shifting from a
world where the key
source of strategic
advantage was in
protecting and
extracting value
from a given set of
knowledge stocks ...
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124. “Shift Index”
“...into a world in which the
focus of value creation
is effective participation
in knowledge flows.”
–Thomas Friedman
Pulitzer prize winner (3x)
New York Times
January 19, 2010
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125. “The Power
of Pull”
“Looking for things
without a defined path
and without knowing
what they are”
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126. Britannica vs. Wikipedia
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127. Physician adoption of new
practices years after discovery
Flu vaccine, year 32:
The “17 years” thing 55% doing it,
45% still not
From A. Balas, Institute of Medicine, in Yearbook of Medical Informatics 2000
Beta blockers, year 18:
62% doing it,
38% still not
Cholesterol, year 16:
65% doing it,
35% still not
Diabetic foot care, year 7:
20% doing it,
80% still not
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128. © e-Patient Dave
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129. Overheard:
“You’re crazy if you don’t.
check Wikipedia,
and you’re a fool
.if you stop there.”
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130. Watson remembers
everything it’s read
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131. What if medical problem solving
were suddenly an open book test
where all the relevant facts
were gathered and handed to you
(including this week’s news)
so you could spend your energy
thinking?
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132. © e-Patient Dave
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133. “May Require
Refrigeration”
cushings365.posterous.com, 9 / 17 / 10
• “Panic! For the first time, I got a note
on my florinef that it might (MIGHT?)
need to be refrigerated.
• I didn't know that. Should I have been
doing that all along?
• No one told me.”
• “I called the pharmacy.
• They read what is on the printout which
comes with the drug. I had already read
that. It wasn't helpful.”
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134. “May Require
Refrigeration”
cushings365.posterous.com, 9 / 17 / 10
• “So, I asked the ones who know.
My Cushie friends who take it.
Those who have had BLA’s.
• “The verdict:
– No, that's a generic warning with
fludrocortisone (generic).
– Only at extreme temps should it be
refrigerated in the U.S.
– Some of the brands in the UK and other
countries need refrigerated.”
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135. Dr. Eric Topol
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136. © e-Patient Dave
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137. • The practice of medicine
is coming apart at the seams –
“dis-integrating” –
so the pieces can recombine
in new ways
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138. • Connectedness and
disappearing boundaries
mean we can know things we
could not know in the past.
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139. • In the past we had to guess at
Rx based on demographics
(similar populations). We’re
starting to not need that.
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140. The Beery Twins
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141. The Beery Twins
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142. The Beery Twins today
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143. © e-Patient Dave
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144. 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?
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145. “Shift Index”
“...into a world in which the
focus of value creation
is effective participation
in knowledge flows.”
–Thomas Friedman
Pulitzer prize winner (3x)
New York Times
January 19, 2010
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146. 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.”
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147. Top things IVF patients asked for
• I want insurers to reimburse six attempts.
• I want insurance companies to only count it
if a puncture or a replacement has taken place.
• I want empathy from my doctor,
not just technical or financial information.
• I want separate waiting rooms for pregnant women
and patients with a fertility treatment
• I want more time to make an appointment,
even in the evening.
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148. Achieve ment!
Compliance
(Whose goal is it, anyway?)
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149. Peter Margolis, Cincinnati Children’s
.5 x .5 = .25
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150. © e-Patient Dave
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151. © e-Patient Dave
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152. Are we barking up the wrong tree?
Used with permission
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153. Used with permission
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154. Behavioral
Economics
• Loss aversion is stronger
than the desire to gain
• Cognitive framing; anchoring; ...
• But it’s tricky
• Even for really self-aware
people, it’s not as easy as
just giving them facts.
• That’s important for medicine.
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155. Physician as trusted authority
“The oft-expressed
fear that patients are
using the internet to
self-diagnose and self-
medicate without
reference to medical
professionals does not
emerge in national
phone surveys or in
this special rare-
disease community
© e-Patient Dave
survey.”
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156. “There’s crap on the internet.
We need to get out there and
balance it”
Wendy Sue Swanson, MD
Mother pediatrician
@SeattleMamaDoc
Facebook too
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157. An OB/Gyn on social media??
@MacObGyn
• “The more info we push out, the better decisions they make”
• “We’ve taken a demographic group and through connected
technology they’re engaged in their health”
• “Our patients tell their friends – ‘and he’s on Facebook’”
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158. PatientsLikeMe lithium study
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159. © e-Patient Dave
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160. Me:
“Did being an engaged patient save me?”
Dr. McDermott:
“I have no doubt the interleukin
killed the tumors.”
“But I don’t know if you could have
tolerated enough to do the job
if you hadn’t gotten so involved”
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161. JAMIA, 1997
e-Patients Can Help
Improve Healthcare
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
© e-Patient Dave
© e-Patient Dave
dave@epatientdave.com Skype: ePatientDave
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