The document discusses the transformation of healthcare knowledge access and sharing due to the internet and rise of connected patients. It notes how patients can now connect to information and each other online, changing the traditional closed system of healthcare knowledge. Examples are provided of early visions of online health from the 1990s becoming reality, as well as specific patient innovators creating open source medical devices and data sharing projects today. The challenges institutions face in adapting to these changes are also addressed.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
If you live long enough,
the future changes

2. If you live long enough,
reality changes
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com

3. What if you woke up
every day
and the laws of nature
had changed?

4. What would you do?
How would you plan
for the future?

5. Source:
@Asymco

6. 1969!

8. Whole Earth Catalog
“Millennium Edition”
1994
“Health Online”
– in 1996!

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

12. Because of the Web, Patients Can
Connect to Information and Each Other

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

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

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

20. Reported June
2015

21. Reported June
2015

22. Adoption of new practices
years after discovery
The “17 years” thing
From A. Balas, Institute of Medicine, in Yearbook 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

24. After 30 years of practicing peer review
and 15 years of studying it experimentally,
I’m unconvinced of its value.
Evidence on the upside of peer review is sparse,
whereas evidence on the downside is abundant.
Most of what appears in peer reviewed journals
is scientifically weak.
Richard Smith, 25 year editor
of the British Medical Journal, 2009
Richard Smith
25 year editor of the BMJ

25. Marcia
Angell
Former NEJM
editor-in-chief

26. Richard Horton
Current editor-in-chief,
The Lancet
April 2015

27. The evolution of
scientific certainty
and thus authority

28. Let’s meet two
real e-patients:
Hugo Campos and
Dana Lewis

29. Hugo Campos wants his ICD data

30. Patient Experience: periodic printouts

31. Kardia (née “AliveCor”):
Smartphone ECG

33. #OpenAPS & @DanaMLewis
(Open Source Artificial Pancreas System)

34. “Quantified Self” #OpenAPS
Public Health conference
San Diego, May 18 (n=1)*59(n=1)*59
August 13: *103

35. #OpenAPS users are tweeting

36. When assets digitize,
what’s possible
changes fast.
Fundamental Principle:

38. My college classmate Jay

39. The future
when Jay and I were born

40. Today:
Medicine and population health
are preventing most deaths

41. 34 years from now:
a truly unprecedented
population profile

42. Half of everyone who’s
ever been 65 is alive today
Population today: ~7.0 billion
End ofWorldWar II: ~2.3 billion
42

45. “But culture change
is HAAARRRRD.”

51. 1871: Oliver Wendell Holmes
“Your patient has no more
right to all the truth you
know than he has to all the
medicine in your saddle-bags.
He should get only just so
much as is good for him.”
Bellevue graduation speech

52. “A new scientific truth
does not triumph
by convincing its opponents
and making them see the light,
but rather because
its opponents eventually die,
and a new generation grows up
that is familiar with it.”
Max Planck Nobel Prize, 1918

53. When new things
become possible,
best practices change.

54. Innovators,
don’t &@#$ it up