Keynote to "Partnerships in eHealth" conference in Guelph, Ontario, April 13

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Enabling Ontario’s
ResidentsThrough
Personal Health Records
1

2. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
(and wearables
and apps!)
2

3. Patient is not
a third person word.
Your time will come.

4. People perform
better when they’re
informed better.

5. 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
• 2011: international

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

8. Pt of future

9. Me? An indicator
of the future??
• Who’s getting online:
– 1989: Me (CompuServe sysop)
– 2009: 76% of US adults online
• 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 Incidental Finding
Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder
will be fine …
but there’s
something
in your lung”

11. Multiple tumors in both lungs

12. E-Patient Activity 1:
Researching my condition

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

14. Facing the Reaper
My mother
My daughter

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

16. E-Patient Activity 2:
“My doctor prescribed ACOR”
(Now mostly moved to SmartPatients.com)

17. 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
– And one of them was at my hospital

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

21. Question:

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

23. “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

24. 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.

25. “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.

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

27. What do we mean by
Empowered?

28. Empowerment
“Increasing the capacity
of individuals or groups
to make choices [about what they want]
and to transform those choices
into desired actions & outcomes”
World Bank, 2002

29. What do we mean by
Engaged?

30. The state of
patient engagement
today:
A puzzle with no
agreed paradigm.

31. Angela
Coulter

33. Patient Activation Measure (PAM):
What Does it Mean to Be Activated ?

34. 34
Behaviors by Level of Ac2va2on Among Diabetes Pa2ents
RWJ PeaceHealth Study 2006
© Insignia Health 2009

35. Behaviors in Medical Encounter
by Ac6va6on Level

36. But: the PAM
is one of many
engagement
frameworks

37. “Situational Awareness”
is vital –
and there have been
real changes in who CAN
get at SA data

40. Kardia (née “AliveCor”):
Smartphone ECG

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

44. #DIYPS & @DanaMLewis
(“Do-it-yourself Pancreas System”

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

48. We perform better
when we’re
informed better.

49. But information alone
doesn’t change
behavior

50. (as I found out)

52. Withings
Withings Wi-Fi scale
Fitness wristband & heart band

53. Withings
Withings Wi-Fi scale
Fitness wristband & heart band
YMCA Diabetes Prevention Class
(food training & physical activity)
MyFitnessPal diet tracking app
Strong spousal support

54. p.s.: My doctors
can’t see this
in their computers!
OMG, I’m a runner now

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

57. Zoe
When does
autonomy
become
appropriate?

58. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Enabling Ontario’s
ResidentsThrough
Personal Health Data
58