This document profiles "e-Patient Dave" deBronkart, an advocate for empowered patients. It summarizes his journey from being diagnosed with kidney cancer in 2007 to becoming a full-time patient advocate by 2010. It describes how he was able to find useful information and connect with other patients online that helped inform his treatment decisions. The document advocates for patients having access to their own medical data and discusses how empowered, engaged patients are transforming the traditional patient-provider relationship.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
E-Patients:
Empowered, Engaged,
Equipped, Enabled.

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

3. It profoundly
alters what
patients can know
and contribute.

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

7. 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

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

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

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

11. Get engaged.
Get it in gear.
Do everything you can.

12. E-Patient Activity 2:
“My doctor prescribed ACOR”
(Community of my patient peers)

13. ACOR members 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

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

16. Question:

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

18. “If I read two journal articles every night,
at the end of a year I’d be 400 years behind.”
It’s not humanly possible to keep up.
Dr. Lindberg: 400 years

19. The lethal lag time:
2-5 years
During this time,
people who might have benefitted can die.
Patients have all the time in the world
to look for such things.
The time it takes after successful research is completed
before publication is completed and the article’s been read.

20. Because of theWeb,
Patients Can Connect to Information
and Each Other (and other Providers)

21. Compare with
- “To Err is Human” (98,000 deaths/yr Nov 1999)
Death by Googling:
Not.
(Dr. Gunther Eysenbach,Europe: 0 deaths found in a three year search)

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

23. Next lesson:
When assets digitize,
things change fast.

24. Dr. EricTopol

25. AliveCor: iPhone EKG
12/3/12:
“FDA clears iPhone heart
monitor,doctors can pre-order”
Feb 2014: OTC

26. Cory Doctorow
Co-editor of Boing Boing
Doctorow’s First Law:
“Any time someone
puts a lock on something
that belongs to you,
and won’t give you a key,
they’re not doing it
for your benefit.”

27. Case Study:
Hugo Campos wants his ICD data

29. Full,
unrestricted
& convenient
access.
Doctor Experience

30. Patient Experience

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

33. New I.P. decision on
patient data access

35. We demand a
MEDICAL
RECORD
SPIGOT!
It’s all about ME, so it’s MINE!
Take action: bit.ly/healthspigot

36. “Data Liberación!”
Todd Park
Innovator
Entrepreneur
HHS Chief TechnicalOfficer
US Chief TechnicalOfficer

37. Get Involved in
Your Medical Data.
Quality Matters.

38. Pre-op:“At least you won’t be lopsided.”
“What do you mean?”
“You’re getting a bilateral mastectomy.”
“No I’m not!”
“That’s what came to us on this paper.”

39. Dec. 1, 2011:
Live blogs (instagr.am) à
her first mammogram.
Diagnosis: uh-oh.
Gets her (scan) data and
(Dec. 18) live-tweets trying to view it.
@Xeni
One of Cory’s co-editors

40. “Now I know why docs
don’t give you scan data.
I see theVirgin Mary,
Jimmy Hoffa, several forks,
and Saddam’s yellowcake
hiding in my guts.”
“And this CT scan makes my butt look big.”
@Xeni
Live tweeting,12-18-2011

41. “So I figure out how to open
my bone scan data. I look.”
“WTF.”
“What’s that dick-shaped
ghost-shadow thing—
it looks like I have a penis!”
“I call a hacker pal.‘That, Xeni, is a dick.’”
“Look at metadata more carefully. THEY GAVE ME
THE WRONG DATA. SOME OTHER DUDE’S SCANS.”
@Xeni
Next day: 12-19-2011

42. “So, the other thing that
arises from realizing you’ve
been given someone else’s
medical imaging data is: does
someone else have mine?”
“…horrified... Not even
because it’d upset me that much if it were made
public? But makes me lose faith in Q of service.”
@Xeni
Next day: 12-19-2011

43. You know a movement
is a social revolution
when artists and
musicians show up.

44. You know a movement
is a social revolution
when artists and
musicians show up.

45. MOVIE
Video

48. How a kidney cancer wife found
the info she needed
• No insurance;
no treatment.Then:
• Three bad hospitals;
no help.Then:
• A friend said
“I know a guy...
on Twitter”

49. Regina Holliday’s
Medical Mural Advocacy Project
TheWalking Gallery
ReginaHolliday.blogspot.com

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

53. Steven Keating

54. Googling is a sign
of patient
engagement!

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

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

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

60. Reported June 2015

61. Reported June 2015

62. #WeAreNotWaiting
#NightScout

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

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

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

66. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
E-Patients:
Empowered, Engaged,
Equipped, Enabled.