My annual lecture to John Glaser's class for innovators in the Wharton MBA program at the U of Pennsylvania. Includes added slides for topics I mentioned beyond the slides shown.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
The e-Patient’s
Perspective

2. “I want to note especially
the importance of the resource
that is most often under-
utilized in our information systems –
our patients”
Charles Safran MD, Beth Israel Deaconess
quoting his colleague,Warner Slack MD
Testimony to the HouseWays & Means
subcommittee on health, 2004

3. 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

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

5. JAMIA, 1997

6. Pt of future

8. The Engaged Patient
12 items in my pre-appointment “agenda” email

9. The 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
Where’s This From??

11. PrimaryTumor: Kidney

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

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

14. 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

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

16. Because of the Web,
Patients Can Connect to Information
and Each Other (and other Providers)

17. “If I read two journal articles every night,
at the end of a year I’d be 400 years behind.”
Dr. Lindberg: 400 years

18. The lethal lag time:
2-5 years
The time it takes after successful research is completed
before publication is completed and the article’s been read.

19. Physician adoption of new
practices years after discovery
The “17 years” thing
From A. Balas, Institute of Medicine, inYearbook of Medical Informatics 2000
Flu vaccine, year 32:
55% doing it,
45% still not
Beta blockers, year 18:
62% doing it,
38% still not
Diabetic foot care, year 7:
20% doing it,
80% still not
Cholesterol, year 16:
65% doing it,
35% still not
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20. Scurvy
264
years!

21. Case Study:
Hugo Campos wants his ICD data

23. Full,
unrestricted
convenient
access.
Doctor Experience

24. Patient Experience

25. $99Activity
Fitbit

26. $129
Blood Pressure
Withings BP Monitor

27. Weight
Withings WiFi Scale
$159

28. $149
Sleep
Zeo Sleep Manager

29. No data
Implanted
Cardiac
Defibrillator
$30,000

31. Raw data

32. Put empowering
information
in consumers’
hands

33. Dr. EricTopol

34. iPhone EKG??
12/3/12:
“FDA clears iPhone heart
monitor, doctors can pre-order”

36. Data quality is
essential.
Let Patients Help.

37. Who has the most at stake
with the accuracy,
completeness and
availability
of the medical record?

38. “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

39. “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

40. 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.”

41. “Data Liberación”
Todd Park
Innovator
Entrepreneur
HHS ChiefTech Officer
US ChiefTech Officer

42. “My patients
aren’t like that.”
“They aren’t
asking for this.”
Objection:

44. Source:
“45 vintage sexist ads
that wouldn’t go down
well today”
(Viral on Facebook, Fall 2013)

48. Obstacle to adoption:
“But patients
don’t understand
this stuff.”

49. If the data’s unclear
let’s MAKE it clear
Like other industries do.

50. Thomas Goetz, Wired

51. Thomas Goetz, Wired
“It’s time to redesign medical data”

52. Same data –
better software.
Information: clearer.
Consumer:
informed, enabled.

53. Psoas muscle
(My kidney tumor was encroaching on it) my rendering onVisibleBody.com

54. Why not “Google Earth for my body”?

55. OsiriX

56. You know
it’s a revolution
when the artists
and musicians
show up

57. on.TED.com/Dave

58. Information makes a difference.
bit.ly/DataSong

59. Huge Lesson:
When assets
digitize,
things move fast.

64. Permettez-
moi de vous
présenter…
les Mini-Me’s.

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

69. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
The e-Patient’s
Perspective