Presentation to Texas Hospital Association Quality & Patient Safety keynote, December 2, 2015.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
How the Changing
World Is Enabling New
Patient Partnerships

2. “It can be argued
that the largest
yet most neglected
health care
resource,
worldwide,
is the patient…”

3. “People
perform better
when they’re
informed
better.”

4. 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

5. The issue that’s
central to our
thoughts today:

6. There’s been a
profound shift
in where competence
and information can
be found.

7. To be wrong about this
(or simply out of date)
is to be unable to
accurately plan
for the arriving future.

8. Fortunately,
it’s not hard
to understand
what’s newly possible.

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

11. Pt of future

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

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

15. Multiple Tumors in Both Lungs
Where’s This From??

16. Primary Tumor: Kidney

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

18. “My doctor prescribed ACOR”
(Community of my patient peers)

19. ACOR patients 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

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

22. How can it be
that the most useful
and relevant and
up-to-the-minute information
can exist outside of
traditional channels?
© e-Patient Dave
Re-use is permitted with this notice

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

24. Closed(system Open(network
Transformation(of(Knowledge(Access
Slide&by&@ePatientDave&2015&based&on&
Engelen&&&Derksen&2010&at

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

26. 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.

27. From the
patient’s perspective,
what’s important
looks different.

28. The #FirstMRI movement (2011)

29. Just ask us.
Please.

30. “How can patients participate if they don’t
have the information?” – Dr.Danny Sands

31. Who has the most at stake
with the accuracy,
completeness and
availability
of the medical record?

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

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

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

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

39. “Could I ask
some questions?”

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

41. Health literacy

42. Health clarity

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

45. Thomas Goetz, Wired

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

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

48. Clarity is power.

49. Have you noticed –
there are a lot more
old people?

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

52. It’s because
y’all saved us
from dying!!

53. My classmate Jay

55. The Futile Urge
for Certainty

56. “If I read two journal articles every night,
at the end of a year I’d be 400 years behind.”
Dr. Lindberg: 400 years

57. 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.

58. 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 CommonsAttribution / Share-Alike
May be distributed with this license included

59. Scurvy
264
years!

68. My head hurts.
Can we have some
fun now??

69. When assets digitize,
things change fast.

70. Today,
radiological
image data
is being used for
amazing things.

73. 3d print baby’s heart
http://3dprint.com/17443/3d-printed-heart-baby/

74. 3d print heart for
transplant
http://news.sky.com/story/1563135/surgeon-uses-3d-
printed-heart-to-improve-surgery

75. I’m thinking –
“Someday,
3D printing will
move down market
to consumers”

76. “3D Print
Yourself”

81. The obvious question:
“That’s cute,
but what could anyone
really do with it?”

82. You never know.
That’s the point.
Liberate the data!

83. Steven Keating

84. Googling is a sign
of patient
engagement!

85. Predictably,
the empire starts
to strike back.
It can look ludicrous.

88. Post(on(LinkedIn:
dave.pt/belgiangoogle2
The(ad(videos:
dave.pt/belgiangoogle3
dave.pt/belgiangoogle4

89. Meanwhile,
evidence grows
that the current
paradigm is collapsing

90. Reported June 2015

91. Reported June 2015

93. Closed(system Open(network
Transformation(of(Knowledge(Access
Slide&by&@ePatientDave&2015&based&on&
Engelen&&&Derksen&2010&at

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

98. It’s great
to be alive.

99. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Yes, the Changing World
Is Enabling New Patient
Partnerships