e-Patient Dave's 40 minute keynote at KPN's "Meesters in de Zorg" (Masters in Health) event at the Rijksmuseum, October, 2012

1. The e-Patient Movement
Engaged e-Patients are
Changing What’s Possible in
Healthcare
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave (introduce yourself please!)
LinkedIn.com / in / ePatientDave
dave@epatientdave.com
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

2. “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
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

3. How I came to be here
• A graphic arts technology marketing guy
who got sick and experienced health care
• 2007: Cancer
• 2008: blogging
• 2009: Participatory
Medicine, Speaking
• 2011: international
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

4. Doc Tom said, e-Patients.net founder
“e-Patients are E quipped MD
Tom Ferguson
Engaged
1944-2006
Empowered
Enabled”
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

5. Patient Engagement
has nothing to do
with politics and
who pays for what.
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

6. It has everything to do
with the relationship:
sharing the knowledge,
the authority,
the information,
the work.
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

7. Pt of future
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

8. Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

9. Me? An indicator • Who’s getting online:
– 1989: Me (CompuServe sysop)
of the future?? – 2009: 76% of US adults online
• 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
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

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

11. The Engaged Patient
12 items in my pre-appointment “agenda” email
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

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

13. Multiple tumors in both lungs

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

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

16. How can it be
that the most useful
and relevant and
up-to-the-minute information
can exist outside of
traditional channels?
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

17.  e-patients.net
Dr. Lindberg: 400 years
“If I read two journal articles every night,
at the end of a year I’d be 400 years behind.”
The lethal lag time:
2-5 years
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

18. “These conclusions
are no more anti-doctor
or anti-medicine
than Copernicus and Galileo
..were anti-astronomer.”
Informed people can contribute
more today than in the past.
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

19. Gutenberg’s bible
1465
Information
became
available
to a new class
of people.
They didn’t
need experts
to read and
interpret it.

20. Martin Luther’s 95 Theses
495 years ago this week

21. 1980: We were #1 in world sales
(Compugraphic)

22. Then: hello.

23. Goodbye.

24. Cluetrain Manifesto, 1999:
“Markets are Conversations”
(Graphics by Forrester)
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

25. “The Wicked Bible”
(1631)
New
technology
brings new
power and
new risks.
Expect it!
Plan for it.
Don’t be
surprised.
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

26. Obstacle to adoption:
“But patients
don’t understand
these things.”
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

27. If the data’s unclear
let’s MAKE it clear
Like other industries do.
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

28. Thomas Goetz, Wired
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

29. Thomas Goetz, Wired
“It’s time to redesign medical data”
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

30. Same data –
better software
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

31. The information’s
clearer
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

32. The family’s
enabled and
empowered.
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

33. Psoas muscle
(My kidney tumor was encroaching on it) my rendering on
VisibleBody.com
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

34. Why not “Google Earth for my
body”?
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

35. Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

36. Same data –
better software
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

37. Revealing the
information
hidden in the data
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

38. Information
is
empowering.
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

39. Hiding it
is
disempowering.
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

40. Empowerment:
Knowing what you want.
Asking for it.
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

41. Activity $99
Fitbit
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

42. Weight $159
Withings WiFi Scale
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

43. Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

44. “How can patients participate if they can’t
see what I see?” – Dr. Danny Sands
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

45. Guess what:
HE can’t see MY device data.
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

46. Obstacle to adoption:
“But patients
don’t want this.”
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

47. Until people realize
they have the power
to ask,
they don’t ask
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

48. We are at the start
of a new
cultural awakening.
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

49. Enabled by putting
information in the hands
of people who can use it
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

50. 2012
Major new report: “Best Care at Lower
Cost”
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

51. Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

52. Gutenberg’s bible
Information
became
available
to a new
class of
people.

53. Cluetrain Manifesto, 1999:
“Markets are Conversations”
(Graphics by Forrester)
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

54. Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

55. Let Patients Help.
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

56. Participatory Medicine
Sharing the knowledge
Sharing responsibility
Sharing information
Sharing the work
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

57. Thank you.
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using