e-Patient Dave talk at British Columbia Patient Safety Quality Council annual meeting, Feb. 2014, in Vancouver

1. JAMIA, 1997Help
Patients
Let
Heal Healthcare
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
dave@epatientdave.com
Skype: ePatientDave

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

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

7. Pt of future

9. Me? An indicator • Who’s getting online:
– 1989: Me (CompuServe sysop)
of the future??
– 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

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

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

12. Multiple tumors in both lungs
Where’s This From??

13. Primary Tumor: Kidney

14. E-Patient Activity 1:
Researching my condition

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

16. Facing the Reaper

17. My mother

18. My daughter

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

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

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

22. 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

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

25. Question:

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

27. Dr. Lindberg: 400 years
“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.

28. 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.
During this time,
people who might have benefitted can die.
Patients have all the time in the world
to look for such things.

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

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

31. “It may be
more dangerous
not to google
“your condition.”

32. “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.

33. Institute of Medicine – Sept 2012
Major New Report: “Best Care at Lower Cost”

34. Yes, the IOM itself
says e-patients are an
essential part of
tomorrow’s healthcare.
Patient-Clinician Partnerships
Engaged, empowered patients—
A learning health care system is
anchored on patient needs and
perspectives
and promotes the inclusion of patients,
families, and other caregivers as vital
members of the continuously learning
care team.

35. Can we measure…
“Engaged,
empowered
patients”?

36. What Does it Mean to Be Activated ?

37. !Ac$va$on!Level!is!Predic$ve!of!Behaviors!
Research(consistently(finds(that(those(who(are(more(
ac3vated(are:(
– Engaged(in(more(preven3ve(behaviors(
– Engaged(in(more((healthy(behaviors(
– Engaged(in(more(disease(specific(self<
management(behaviors(
– Engaged(in(more(health(informa3on(seeking(
behaviors(

38. (Ac3va3on(is(developmental(
Source: J.Hibbard, University of Oregon

39. Behaviors!in!Medical!Encounter!!
by!Ac$va$on!Level!!

40. How engaged are YOU?

41. Urgency:
The Demographic
Crunch

42. Used(with(permission(of(John(O.(Moore(MD,(PhD(((((newmed.media.mit.edu(
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&

43. Used(with(permission(of(John(O.(Moore(MD,(PhD(((((newmed.media.mit.edu(
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&

44. My classmate Jay

45. Half of everyone who’s
ever been 65 is alive today
Population today:
~7.0 billion
End of World War II: ~2.3 billion

46. “How can patients participate if they can’t
see what I see?” – Dr. Danny Sands

47. Can we measure…
Accurate,
careful management
of important
information?

48. @Xeni
Live tweeting, 12-18-2011
“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.”

49. @Xeni
Next day: 12-19-2011
“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.”

50. 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.”

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

53. Data quality is
essential.
Let Patients Help.

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

60. Put empowering
information
in consumers’
hands

61. Dr. Eric Topol

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

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

68. Next Lesson:
When assets digitize,
things move fast.

74. 2.8 e-Patient Years in Pictures…
December 2006
October 2007
May 2009

79. JAMIA, 1997Help
Patients
Let
Heal Healthcare
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
dave@epatientdave.com
Skype: ePatientDave