Talk to Pfizer's European Patient Advocate Group, Stockholm, Nov. 17, 2017.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Let Patients Help
improve everything
about care review

2. How I came to be here
• High tech marketing: data geek; tech trends; automation
• 2007: Cancer discovery & recovery
• 2008: E-Patient blogger
• 2009: Participatory Medicine, public speaking
• 2010: Full time
• 2011: international
• 2012: med schools, advisory, consult
• 560+ events, 18 countries,
1400 blog posts, 11 universities,
18 articles, 2 book chapters

3. “Patients are
the most under-
used resource
in healthcare”
Informatics pioneer
Dr.Warner Slack,
since the 1970s
What’s he talking about?

4. Evolution of patient power
• Doctor Spock’s Baby and Child Care (1946)
• Our Bodies, Ourselves (1973)
“We weren’t encouraged to ask questions,
but to depend on the so-called experts,”
Hawley told Women’s eNews.
1973

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

7. JAMIA, 1997

8. Governance:
“The truth shall set ye free
but first it will piss you off”

9. 2007: My “Incidental Finding”
Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder
will be fine …
but there's
something
in your lung”

10. Multiple tumors in both lungs

11. E-Patient Activity 1:
Researching my condition

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

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

14. Get engaged.
Get to work.
Do everything you can.

15. “My doctor prescribed ACOR”
(Community of patient peers … see SmartPatients, Inspire.com)

16. My patient peers 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

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

18. Immunotherapy:
To this day
nobody knows why I responded
and others don’t.

20. Question:

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

22. Because of the Web, patients can
connect to information and each other

23. Social Media: Information Capillaries

24. “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.

26. Paternal caring
“No, honey –
you don’t know
what you need.”
“I’ll take care of you.”
Sensible – up to a point
“I’ll decide for you.”

27. Zoe
When does
autonomy
become
appropriate?

28. Who areTHEY
to be paternalistic??

30. 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

31. Marcia
Angell
Former NEJM
editor-in-chief

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

33. We are witnessing
the evolution of
scientific certainty
and thus authority

34. “It’s up to the doctors to decide
which treatments work best”?

35. The state of
patient engagement
today:
A puzzle with no
agreed paradigm.

36. Empowerment
“Increasing the capacity
of individuals or groups
to make choices [about what they want]
and to transform those choices
into desired actions & outcomes”
World Bank, 2002

37. What do we mean by
Engaged?
Participating?
Derived from Arnstein’s Ladder of Citizen Participation, 1969
Policy wonks may enjoy this discussion of Arnstein’s 8 rungs
but I consider the following visualization (by Catherine Gerard,
University of Syracuse) more understandable.

38. Citizen Participation level 1:
“Here’s what we’re doing”
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid
eshows/Public%20Policy%20Conflict.ppt

39. Citizen Participation level 2:
“What do you think about what we’re doing?”
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid
eshows/Public%20Policy%20Conflict.ppt

40. Citizen Participation level 3:
Involving the public in your work
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid
eshows/Public%20Policy%20Conflict.ppt

41. As gorgeously
designed
Example of what a difference
“consult” makes: here’s a
sidewalk created before
consulting the citizens.
See next slide.

42. As gorgeously
designed
What they would
have asked for
if they’d been
consulted
(Design thinkers call this
“desire lines”)

43. Citizen Participation level 4:
Deciding together what to do (and doing it)
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid
eshows/Public%20Policy%20Conflict.ppt

44. Citizen Participation level 5:
Citizens calling the shots – full power
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid
eshows/Public%20Policy%20Conflict.ppt

45. To move people up the ladder,
empower them:
increase their capacity
to take effective action.

46. It’s perverse
to keep someone in the dark
then say they’re ignorant :-)

47. Let’s meet some
highly activated
e-patients of today.

48. Sara Riggare,
Stockholm
@SaraRiggare

49. Hugo Campos wants his ICD data
@HugoOC

50. Hugo Campos
@hugooc
HugoOC@gmail.com
My first year with
the AliveCor
February 8, 2013

52. @DanaMLewis

53. #DIYPS: Open Source pancreas!
(“Do-it-yourself Pancreas System”

54. #OpenAPS users are tweeting

55. I’m Alive Thanks to Precision Medicine
… and Other Patients
© Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 55
Stage 3a
NSCLC
05/2011
Stage 3b/4
10/2011
Metastatic
09/2012
Clinician
No Evidence of Disease since 12/31/2012
chemo-
rad
Patient
chemo rad
clinical trial (crizotinib for ROS1 NSCLC)
EGFR, ALK
neg
Submit
slides for
gene panel
Request
pathology
results
Visit U of Colorado Hospital
request ROS1/RET tests
enroll in clinical trial
ROS1
pos
10-gene
panel neg
travel to site, take meds, labs/scans, track SEs
Interact online with lung cancer patients and follow research developments
@JanetFD (Janet Freeman-Daily)

56. Meet Kim Goodsell

57. SharonTerry on NPR
@SharonFTerry

58. What’s missing from
our paradigm of patient
that makes these ones unexpected???

59. Cognitive dissonance sets in:
“But my patients
aren’t like that.”

64. April 1967 (fifty years ago):
“K. Switzer” runs the Boston Marathon
“Get the hell out
of my race!”

65. Remove constraints and the future changes
1967 1972 19992017

66. 1967 1972 1999
Paradigm errors è wrong expectations
2017

67. At last, the patient’s view
is getting down to
the business of drugs development.

68. DOI: 10.1177/2168479017716715 August 2017

69. DOI: 10.1177/2168479017716715 August 2017

74. “Patients are
the most under-
used resource
in healthcare”
Informatics pioneer
Dr.Warner Slack,
since the 1970s

75. “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

76. William Gibson
“The future
is here –
it’s just
not evenly
distributed yet”

77. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Let Patients Help
improve everything
about care –
even the science.