- Dave deBronkart is an "e-patient" advocate who became involved in participatory healthcare after being diagnosed with stage IV kidney cancer in 2007. - Through online research and peer support groups, he learned about treatment options that saved his life, experiencing firsthand how engaged patients can access valuable information. - He now works full-time advocating for patient empowerment and engagement, speaking internationally at over 500 events about how empowered, informed patients lead to better outcomes and more cost-effective care.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Patient experience:
the great big clue
to what works in
members’ lives

2. 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 speaking
• 2010: Full time
• 2011: international
• 2012: med schools, advisory, consult
• 560+ events, 17 countries,
1400 blog posts, 11 universities,
18 articles, 2 book chapters

3. Fundamental principle for
understanding healthcare:
“Patient” is not a
third person word
Your time will come.

4. Corollary:
It all looks different
when you’re the one
with the problem.

5. Fundamental principle for
understanding behavior:
People perform better
when they’re informed better.

6. Corollary:
It’s a mental error
to lock people out
then conclude they’re clueless.

7. Please:
Let Patients Help.
Find ways to do it.

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

9. JAMIA, 1997

10. Pt of future

11. 11

12. 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

13. 2007: My “Incidental Finding”
Routine shoulder x-ray, Jan. 2, 2007
Your shoulder
will be fine …
but there's
something
in your lung

14. Multiple tumors in both lungs

15. E-Patient Activity 1:
Researching my condition

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

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

18. Get engaged.
Get to work.
Do everything you can.

19. “My doctor prescribed ACOR”
(Community of my patient peers)

20. 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

21. 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

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

24. Question:

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

26. Because of the web, patients can
connect to information and each other

27. Social Media: Information Capillaries

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

29. 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

30. What do we mean by
Engaged?
Participating?
Derived from Arnstein’s Ladder of Citizen Participation, 1969
Policy wonks may enjoy this discussion of Arnstein’s 8 rungs
but I consider the following visualization more understandable.

31. e-Patient Dave epatientdave.com
Citizen Participation level 1:
“Here’s what we’re doing”
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid
eshows/Public%20Policy%20Conflict.ppt

32. e-Patient Dave epatientdave.com
Citizen Participation level 2:
“What do you think about what we’re doing?”
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid
eshows/Public%20Policy%20Conflict.ppt

33. e-Patient Dave epatientdave.com
Citizen Participation level 3:
Involving the public in your work
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid
eshows/Public%20Policy%20Conflict.ppt

34. As gorgeously
designed

35. As gorgeously
designed
What they would
have asked for
if they’d been
consulted
(Design thinkers call this
“desire lines”)

36. Citizen Participation level 4:
Deciding together what to do (and doing it)
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid
eshows/Public%20Policy%20Conflict.ppt

37. Citizen Participation level 5:
Citizens calling the shots – full power
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid
eshows/Public%20Policy%20Conflict.ppt

38. To move people up that ladder,
empower them:
“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

39. OpenNotes
What happens
when patients see
their doctors’
notes?

40. • 99% of patients wanted to continue
• 17-26% of docs preferred not to…
– But when given the chance to stop, none did
• 85-89% of patients said availability of
open notes would influence their
choice of providers and health plans

41. “Financial
Toxicity”

42. “We perform
better when
we’re
informed
better”

43. Corollary:
“It’s perverse
to keep us in
the dark and
then call us
naïve”

45. What happens
when a consumer
tries to be responsible
about costs?

46. N.H. insurance shopping, 2011
Premium Deductible
Co-pay
after
deductible
Max OOP
(deductible
+ co-pay)
Stop-loss max
(in-network +
out)
Option A $894
Option B $705
Option C $581
Option D $495
Option H $624

47. The choices they offered
Premium Deductible
Co-pay
after
deductible
Max OOP
(deductible
+ co-pay)
Stop-loss max
(in-network +
out)
Option A $894 $1,000 20% $3,500 $12,500
Option B $705 $2,500 20% $5,000 $12,500
Option C $581 $5,000 20% $7,500 $12,500
Option D $495 $10,000 0% $10,000 n/a
Option H $624 $5,950 0% $5,950 $12,500

48. I know – run some scenarios!

49. =IF(maxoop<J17+J18,maxoop,J17+J18)

50. I know – graph it!

51. My favorite
complaint:

52. “Patients are the only
ones who don’t have
any skin in the game”
- Practice manager, quoted in
Health Leaders, Fall 2011

53. 2011: EOB for a scan

54. Speaking of
skin in the game…

56. Doing what empowered buyers do
dave.pt/skincancerRFP

58. November 2014

59. I know: Gadgets!!
Withings Wi-Fi scale
Fitness wristband & heart band

60. I know: Gadgets!!
Withings Wi-Fi scale
Fitness wristband & heart band
YMCA Diabetes Prevention Class
(food training & physical activity)
MyFitnessPal diet tracking app
Strong support from my spouse

61. Became
a runner

62. Became a caregiver
Became
a runner

63. Became a caregiver
Diet:
Fat OK,
carbs not
Became
a runner

65. Diet:
Fat OK,
carbs not
Became
a runner
Became a caregiver

66. 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
Patient experience:
the great big clue
to what works in
members’ lives