Keynote to 125 nurse leaders. After my basic slides, special focus on the how-to's of patient engagement between patient and nurse, and social change required to modify clinician beliefs

1. JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
dave@epatientdave.com Skype: ePatientDave
Transforming Healthcare:
Listening to
the Patient’s Voice

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 Speaker
• 2010: full time
• 2011: international

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

5. Pt of future

7. 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

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. Primary Tumor: Kidney

11. E-Patient Activity 1:
Researching my condition

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

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

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

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

16. 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

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

20. Question:

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

22. 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

23. 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.

24. 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)

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

26. Closed&system Open&network
Transformation&of&Knowledge&Access
Social'media'act'as'
“Information'capillaries”
Slide&by&@ePatientDave&2015&based&on&
Engelen&&&Derksen&2010&at

27. 2012:
Big-time
acceptance
by the
establishment

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

29. Googling
is a sign of an
engaged patient!

30. Predictably,
the empire starts
to strike back.

31. Predictably,
the empire starts
to strike back.
It can look ludicrous.

34. Post&on&LinkedIn:
dave.pt/belgiangoogle2
The&ad&videos:
dave.pt/belgiangoogle3
dave.pt/belgiangoogle4

35. Reported June 2015

36. Reported June 2015

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

38. But remember –
information alone
doesn’t change
behavior

40. Withings
Withings WiGFi&scale
Fitness&wristband&&&heart&band

41. Withings
Withings WiGFi&scale
Fitness&wristband&&&heart&band
YMCA&Diabetes&Prevention&Class
(food&training&&&physical&activity)
MyFitnessPal diet&tracking&app
Strong&support&from&my&spouse
My doctors can’t see this in their computers!

42. 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.

45. Gorgeous
Design

46. The Users’
Dream
Gorgeous
Design

47. You don’t do
patient engagement
to people.

48. It’s a with thing.

49. E-Patient 101:
“I’m the kind of patient
who likes to understand
as much as I can
about my health.”

50. E-Patient 101:
“Can you help me
understand more?”
“Are there any sites
you recommend?”

51. Next Lesson:
Get Involved inYour Data.
Quality Matters.

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 paper.”

53. “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

54. “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
THEWRONG DATA. SOME OTHER DUDE’S SCANS.”
@Xeni
Next day: 12-19-2011

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

63. Paternalistic caring
“No, honey –
you don’t know
what you need.”
“I’ll take care of you.”
Sensible – up to a point
“I’ll decide for you.”

64. What do we mean by
Empowered?

65. 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

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

68. JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
dave@epatientdave.com Skype: ePatientDave
Transforming Healthcare:
Listening to
the Patient’s Voice

69. Extras that came up
during Q&A:

70. We all want
reliable information.
What do we assume
about where to get it
and what to avoid?

71. The literature?

72. Not according to
the editors.

73. After 30 years of practicing peer review
and 15 years of studying it experimentally,
I’m unconvinced of its value.
Evidence on the upside of peer review
is sparse, whereas evidence
on the downside is abundant.
Most of what appears in peer reviewed journals
is scientifically weak.
Richard Smith, 25 year editor
of the British Medical Journal, 2009