Keynote at NCQA's Medical Home Summit, July 2014. - I'll try to fix the font & layout problem - Microsoft doesn't allow "embed custom fonts" in Mac Powerpoint - sometimes it works, sometimes it doesn't! Grr...

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Engaging Patients
in Their Health and
Their Care
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2. Disclosures
• Advisory consulting on Patient
Perspective: TrialReach, TRON

4. 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

5. “It can be argued
that the largest
yet most neglected
health care resource,
worldwide,
is the patient…”
5

6. e-Patients.net founder
Tom Ferguson MD
1944-2006
Equipped
Engaged
Empowered
Enabled
e-Patients are

8. Pt of future

10. Me? An indicator
of the future??
• Who’s getting online:
– 1989: Me (CompuServe sysop)
– 2009: 76% 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

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

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

13. Multiple tumors in both lungsWhere’s This
From??

14. Primary Tumor: Kidney

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. Facing the Reaper

18. My mother

19. My daughter

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

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

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

23. 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

24. E-Patient Activity 3:
Reading (and sharing)
my hospital data online

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

27. Question:

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

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

30. “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

31. 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.

32. 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)

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

36. “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.

37. Web 2.0: “When the web began to harness
the intelligence of its users.” – Tim O’Reilly

38. “My patients
aren’t asking
for this.”
Objection:

41. “My patients
aren’t at all
engaged.”
Problem:

42. Are you??

43. Peter Elias, MD (Maine)
“When my wife wants me
to help pick carpet for
remodeling the grown
son’s bedroom and hall, I
truly do not WANT to do
anything and do not
WANT to be involved, so
I am always in the market
for new and more
convincing ways to say

44. Peter Elias, MD (Maine)
“I love what my auto
mechanic does. ‘Hey
doc. Your snow tires
aren’t looking so good.
Do you have a
preference for brand or
price, or do you want me
to just give you a couple
good options and my
recommendation?’”

45. Peter Elias, MD (Maine)
“I have no problem with
patients who want to
come in and have me
explain just enough so
they can credibly tell their
spouse what the doctor
said. My job is tohelp them reach their health goals,

46. Peter Elias, MD (Maine)
“I have no problem with
patients who want to
come in and have me
explain just enough so
they can credibly tell their
spouse what the doctor
said. My job is tohelp them reach their health goals, and
the ability to be minimally involved can
be one of their health goals.

47. Prochaska’s
Transtheoretical Model

48. Hibbard’s PAM
(Patient Activation Measure)

49. Models of Engagement,
Activation and Change
• TTM (Prochaska)
• Patient Activation Measure (Hibbard)
• Motivational Interviewing
(Miller & Rollnick)
• CDSMP (Lorig)

50. How engaged are YOU?

51. Patients have
the most at stake
with the accuracy,
completeness and
availability
of the medical record

52. Wall Street Journal, June
10

53. It’s perverse
to keep people in the dark
then call them ignorant.

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

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

57. • 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
57

58. Dr. Eric Topol

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

61. Urgency:
The Demographic
Crunch

62. 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
Used with permission of John O. Moore MD, PhD newmed.media.mit.edu

63. 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
Used with permission of John O. Moore MD, PhD newmed.media.mit.edu

64. My classmate Jay

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

66. At last:
recognition
from the
establishment

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

68. 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.

69. June 11, 2014
Announced –
• Patient advisory panel
• Patient peer review
of research papers
• Authors are to document
how they involved patients in
defining the question and outcome
measures
www.bmj.com/content/348/bmj.g3726

70. William Gibson
“The future
is here –
it’s just
not evenly
distributed yet”

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

73. This month –
first birthday

74. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Engaging Patients
in Their Health and
Their Care
74