This document profiles "e-Patient Dave" deBronkart and his journey from being diagnosed with cancer in 2007 to becoming a prominent advocate for participatory medicine and empowering patients. It describes his early career in marketing and technology, how he turned to blogging and researching his condition online after his cancer diagnosis, and how he has since become a full-time speaker and advisor on issues of patient engagement and empowerment, publishing over 1400 blog posts and articles on the topic. It stresses the importance of patients being able to access and share health information online to become better informed and engaged in their own care.

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

2. Fundamental principle –
for understanding healthcare:
“Patient” is not a
third person word
Your time will come.

3. Corollary:
It all looks different
when you’re the one
with the problem.

4. 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

6. 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, consu
• 600+ events, 19 countries,
1400 blog posts, 11 universities,
19 articles, 2 book chapters

7. Dave deBronkart:
https://www.radionz.co.nz/audio/player?audio_id=201790938
6034595119:

9. Dave deBronkart:
https://www.radionz.co.nz/audio/player?audio_id=201790938
6034595119:

10. Both the good guys and the bad
guys
achieved so much
with nothing digital.
They only had THINGS.

11. But:
If you live long enough,
things change.

12. “@Berci”
“I read science fiction
so I can better understand
the future”

13. Stewart Brand
Publisher of the Whole Earth Catalog

14. JAMIA, 1997

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

18. Pt of future

19. 19

20. 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

21. 2007: My “Incidental Finding”
Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder
will be fine …
but there's
something
in your lung”

22. Multiple tumors in both lungs

23. E-Patient Activity 1:
Researching my condition

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

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

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

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

28. 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

29. 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

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

32. Question:

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

34. Because of the web, patients can
connect to information and each other

35. Social Media: Information Capillaries

36. Who gets to say
what’s important??

37. If the microscope’s happy
but the patient’s not,
has care been achieved?
Has optimal care??
Was the money well spent
for customer value?

38. #3
What matters most to patients &
families?
Back to Basics Approach to Innovation

42. #4
Context is everything.
How will this impact me and my life?
ME
Family
Work/School
Finances
Well-Being

43. Dutch IVF program
had an insane idea
• Give patient couples
a wiki, and six
months to talk
amongst them-
selves. The promise:
• “We’ll give you
anything you decide
– your top ten

44. Top things IVF patients asked for
• I want insurers to reimburse six attempts.
• I want insurance companies to only count it
if a puncture or a replacement has taken place.
• I want empathy from my doctor,
not just technical or financial information.
• I want separate waiting rooms for pregnant
women
and patients with a fertility treatment

46. e-Patient response:
Googling is a sign of
being an engaged patient!

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

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

51. Israel’s biggest HMO:
“Search victim” in an ER
bit.ly / israeli google

52. Wife brings him to the ER

53. Triage doc: “How much did he ingest?”

54. ER doc: “Clear!!!”

55. They slam his laptop shut
and he’s cured.

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

57. Reported June 2015

58. Stewart Brand
Publisher of the Whole Earth Catalog

59. October 2007
2.8 e-Patient Years in Pictures
December 2006 May 2009

61. When is it
appropriate for
the cared-for
one to start
taking an
active part?

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

65. Protecting lives
is important work.

66. Thank you.

67. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Let Patients Help
improve health
and care