- Dave deBronkart became an "e-patient" after being diagnosed with kidney cancer in 2007. He actively researched his condition online, connected with other patients, and tracked his own health data. - deBronkart argues that patients can serve as a valuable resource in healthcare if they are engaged, empowered with information, and able to help improve the system. When patients are informed partners it can lead to better outcomes. - However, some doctors are hesitant about patients having more access to health information and participating more actively. But studies show that when patients can see doctor's notes online it improves the patient-doctor relationship without increasing doctor workload.

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

3. 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
• 2011: international

7. “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

8. 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

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

11. JAMIA, 1997

12. Pt of future

14. 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

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

16. The Incidental Finding
Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder
will be fine …
but there’s
something
in your lung”

17. Multiple tumors in both lungs
Where’s This From??

18. PrimaryTumor: Kidney

19. E-Patient Activity 1:
Researching my condition

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

21. Facing the Reaper

22. My mother

23. My daughter

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

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

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

27. 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

28. E-Patient Activity 3:
Reading (and sharing)
my hospital data online

29. E-Patient Activity 4:
My own social support network
(CaringBridge.org - family and friends - journal & guestbook)

30. E-Patient Activity 5:
Tracking my data

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

32. Nice curve!

33. Question:

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

35. “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

36. 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.

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

38. 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)

39. “It may be
more dangerous
not to google
“your condition.”

40. “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.

41. Web 2.0: “When the web began to harness
the intelligence of its users.” – Tim O’Reilly

42. “My patients
aren’t like that.”
“They aren’t
asking for this.”
Objection:

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

45. Lesson learned:
People perform better
when they’re
informed better.

46. Obstacle to adoption:
“But patients
don’t understand
this stuff.”

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

48. If the data’s unclear
let’s MAKE it clear
Like other industries do.

49. Thomas Goetz, Wired

50. Thomas Goetz, Wired
“It’s time to redesign medical data”

51. Same data –
better software.
Information: clearer.
Consumer:
informed, enabled.

52. Psoas muscle
(My kidney tumor was encroaching on it) my rendering onVisibleBody.com

53. Why not “Google Earth for my body”?

54. OsiriX

55. Dr. EricTopol

56. iPhone EKG??
12/3/12:
“FDA clears iPhone heart
monitor, doctors can pre-order”

58. Who gets to say what value
is, in the first place??

59. You know
it’s a revolution
when…

61. 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...
onTwitter”

62. Regina Holliday’s
Medical Mural Advocacy Project
The Walking Gallery
ReginaHolliday.blogspot.com

63. Information makes a difference.

64. And finally:
recognition
from the
establishment

65. Institute of Medicine – Sept 2012
Major New Report:“Best Care at Lower Cost”

66. 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.

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

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

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

74. Case Study #3:
Hugo Campos wants his ICD data

76. Full,
unrestricted
& convenient
access.
Doctor Experience

77. Patient Experience

78. $99Activity
Fitbit

79. $129
Blood Pressure
Withings BP Monitor

80. Weight
Withings WiFi Scale
$159

81. $149
Sleep
Zeo Sleep Manager

82. No data
Implanted
Cardiac
Defibrillator
$30,000

84. Raw data

85. JAMIA, 1997

86. 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.”

87. 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.

88. “Data Liberación”
Todd Park
Innovator
Entrepreneur
HHS ChiefTech Officer
US ChiefTech Officer

89. How to start?
Here’s the
magic incantation

90. “I’m the kind of patient
who likes to understand
as much as I can
about my health.”

91. “Could I ask
some questions?”

92. Obstacle to adoption:
“Patients will
flood us with
time-wasting
questions.”

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

95. Announced this past Monday

98. • 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