Opening keynote at the American Medical Informatics Association conference, Nov. 2013. Includes introduction by Dr. Danny Sands. NOTE: this is another deck where Slideshare can't read the right fonts, so some layouts are broken. Feel free to yell at them.
7. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Information at the
point where it’s
needed can save
lives.
8.
9. 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
Speaker
• 2010: full time
10. The only purpose
for recording information
(on paper or electronic)
is so someone can
read it back and act on it.
11. To do this with computers,
we encode it
and decode it.
12. It matters
whether the picture you get
when you read it back
matches the picture you
intended when you stored
it
18. Me? An indicator
of the future??
• Who’s getting online:
– 1989: Me (CompuServe sysop)
– 2009: 76% 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
19. 2007: My “Incidental Finding”
Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder
will be fine …
but there's
something
in your lung”
23. 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
26. E-Patient Activity:
Tracking my data
During a serious disease,
the chance to be engaged (or to help) is a huge mood booster,
infinitely better than “I'm helpless / there's nothing I can do”
27. Surgery & Interleukin worked.
Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
28. Problem(?)
Chronic Disease Epidemic
CDC (2004) Ten Great Public Health Achievements in the 20th Century & Leading Causes of Death
Jones (2012) The Burden of Disease and the Changing Task of Medicine. NEJM
Used with permission of John O. Moore MD, PhD newmed.media.mit.edu
29. Problem(?)
Chronic Disease Epidemic
CDC (2004) Ten Great Public Health Achievements in the 20th Century & Leading Causes of Death
Jones (2012) The Burden of Disease and the Changing Task of Medicine. NEJM
Used with permission of John O. Moore MD, PhD newmed.media.mit.edu
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 (and other Providers)
35. “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
36. 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.
37. 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)
39. “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.
40. Web 2.0: “When the web began to harness
the intelligence of its users.” – Tim O’Reilly
43. Not Liquid Liquid
• Moving it takes effort
• Slow and predictable
• Unexplained arrivals
are suspicious
• Frictionless – controlling
the flow takes effort
• Fast and unpredictable
• “Tracks” everywhere, free
44.
45. “Shift Index”
“We are shifting from a
world where the key
source of strategic
advantage was in
protecting and
extracting value
from a given set of
knowledge stocks ...
46. “Shift Index”
“...into a world in which
the focus of value
creation
is effective
participation in
knowledge flows.”
–Thomas Friedman
Pulitzer prize winner (3x)
New York Times
January 19, 2010
49. VA’s Veterans eHealth University, 2012 – audience
response:
Have you looked in your medical record?
Do you know if it has mistakes?
50. “Now I know why docs
don’t give you scan data.
I see the Virgin 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
51. “So I figure out how to
open my bone scan data. I
look.”
“What the...”
“What’s that ****-shaped
ghost-shadow thing—
it looks like I have a
penis!”
“I call a hacker pal. ‘That, Xeni, is a ****.’”
“I look at metadata more carefully. THEY GAVE
ME THE WRONG DATA. SOME OTHER DUDE’S
SCANS.”
@Xeni
Next day: 12-19-2011
52. 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
53. Who has the most at stake
with the accuracy,
completeness and
availability
of the medical record?
69. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Information at the
point where it’s
needed can save
lives.