This document outlines the principles of participatory medicine as described by "e-Patient Dave" deBronkart. It discusses how access to information empowers patients and allows them to contribute to medical knowledge. When patients are informed and engaged in their care, they can perform better. The emergence of online communities and social media has created new opportunities for patients to connect with information and each other outside of traditional healthcare systems. True empowerment involves treating patients as partners in decisions about their own care.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Doctors & Patients
on the Same Page:
Welcome to the Age of
Participatory Medicine

2. The great question
of information theory:
“What does this mean?”

3. Foundation
Principles

4. 1: Knowledge
is Power.

5. Corollary:
It’s perverse
to keep people in the dark
and conclude they have
no potential.

6. 2: People can
perform better
when they’re
informed better

7. 3: But information alone
doesn’t change
behavior.

8. 4:When assets digitize,
things change fast.

9. Corollary:WATCH OUT.
Don’t get caught as an
expert in the expired reality.

10. “A new scientific truth
does not triumph
by convincing its opponents
and making them see the light,
Max Planck Nobel Prize, 1918

11. “A new scientific truth
does not triumph
by convincing its opponents
and making them see the light,
but rather because
its opponents eventually die,
Max Planck Nobel Prize, 1918

12. “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

13. 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

14. e-Patients.net founder
Tom Ferguson MD
1944-2006
Equipped
Engaged
Empowered
Enabled
DocTom said,
e-Patients are

15. “The emerging world of the
e-patient cannot be fully
understood and appreciated
in the context of
pre-internet medical
constructs.”
2001

16. May 18 @DrDannySands

17. Pt of future

18. 18

19. 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

20. 2007: My “Incidental Finding”
Routine shoulder x-ray, Jan. 2, 2007
Your shoulder
will be fine …
but there's
something
in your lung

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

22. My doctor prescribed ACOR
(Community of my patient peers)

23. 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

24. 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

25. Surgery & Interleukin worked

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

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

30. Social media:“Information capillaries”

31. 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

32. What do we mean by
“empowered”?

33. 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

34. Empowerment
“An empowering approach to
participation treats poor people
as co-producers
with authority and control
over decisions and resources
devolved to the lowest
appropriate level.”

35. Empowerment
“An empowering approach to
participation treats patients
as co-producers
with authority and control
over decisions and resources
devolved to the lowest
appropriate level.”

36. Let’s look at what some
actual e-patients
said yesterday when I asked…

38. Sara
Riggare,
Stockholm

49. Objection:
“Okay for you,
but my patients
aren’t asking for this.”

50. So it goes
in every culture change.

51. Don’t get stuck
being a proud expert on
obsolete beliefs

53. 1967 1972 1999
Paradigm errors è wrong expectations
2017

54. Nov
2016

56. Let’s see what some
highly activated e-patients
are doing to be responsible
for whatever they can do.

57. Hugo Campos wants his ICD data

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

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

61. @DanaMLewis

64. #DIYPS
(“Do-it-yourself Pancreas System”

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

66. #OpenAPS users are tweeting

67. Cognitive dissonance sets in,
and the mind seeks to resolve it:
“It’s because they’re
college graduates.”

68. Meet Kim Goodsell

69. SharonTerry on NPR

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

71. • 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

76. Information alone
doesn’t change behavior

77. November 2014

78. Self-Monitoring CAN Improve Outcomes
WithingsWi-Fi scale
Pre-Diabetes Diagnosis
Fitness wristband & heart band

79. Self-Monitoring CAN Improve Outcomes
Withings Wi-Fi scale
Pre-Diabetes Diagnosis
Fitness wristband & heart band
YMCA Diabetes Prevention Program
(food training & physical activity)
MyFitnessPal diet tracking app
Strong support from spouse

80. p.s.: My providers can’t see this in their computers!
OMG, I’m a runner now

86. Someday,
3D printing will move
“down market”
to consumers

87. “3D Print
Yourself”

89. What could
I do with
THIS??

90. Um,
I could
look at it…

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

93. Steven Keating

94. What can you do to help?
• Lead. Spread the word: the tipping point is here
• Make sure everyone knows HIPAA’s access rights!
• Lead: Spread the word to other professions that
good things can happen when pts see the images
• Speedy release of image data

95. William Gibson
“The future
is here –

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

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

100. The great question
of information theory:
“What does this mean?”

101. Please, enable
contribution:
Let Patients Help.

102. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Doctors & Patients
on the Same Page:
Welcome to the Age of
Participatory Medicine