This document discusses the importance of patient engagement and empowerment in healthcare. It argues that patients are the largest, yet most neglected, healthcare resource worldwide. While patients are the ultimate stakeholders, they are often excluded from discussions about their own care. The document advocates for letting patients help decide what healthcare outcomes and goals are most important. It presents examples of how greater patient access to medical information and engagement in their own care led to better outcomes.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
Let Patients Help
Decide What
Matters
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com

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

3. Patients are the
ultimate stakeholder
Yet they’re often
excluded from discussing
ANYthing

5. What
Glover
observed
was not
caused by
modern
insurance

6. What could be said
that would make any
difference?
To whom would you
say it?

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

8. “E” is not a new idea
• Doctor Spock’s Baby and Child Care (1946)

11. “E” is not a new idea
• Doctor Spock’s Baby and Child Care (1946)
• Our Bodies, Ourselves (1973)
“We weren’t encouraged to ask questions,
but to depend on the so-called experts,”
Hawley told Women’s eNews.
“Not having a say in our own health care
frustrated and angered us.We didn’t have
the information we needed, so we decided
to find it on our own.”

13. Who gets to say
what’s important??

14. Who gets to say
which outcomes
are important??

15. Who gets to say
which outcomes
should be goals?

16. Who gets to
declare which
endpoint
we measure?

17. Who gets to say
what’s in the
patient’s best
interest?

18. 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.”

19. 19

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

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

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

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
– And one of them was at my hospital

24. Surgery & Interleukin worked.
Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm 24

25. Keeping patients in the dark, #1
IL-2?

26. Keeping patients in the dark, #2
Open surgery
vs. laparoscopic

27. Case: Elyse Chapman

28. Case: Elyse Chapman

29. Keeping patients in the dark, #3
Option:
Watchful
Waiting

30. Can you keep someone
in the dark
if you don’t KNOW
what you’re
not telling them?

31. Keeping patients in the dark, #4
Vaginal
hysterectomy

32. Keeping patients in the dark, #5
IL-2
(again)

34. What’s changed since
Arrow’s day?

36. Problem:
Patients may not
find value in all the
technical details

37. (In other words,
to them, the
discussion wasn’t
patient centered)

38. “Ultimately,
it turned out
to be the
trade-off
between
peeing better
and sex.”

39. “And when it
was stated
in those terms,
SDM flowed
into the
conversation.”

40. Let patients help
say which
outcomes
are important

41. Clarity is power.

42. If the data’s unclear
let’s MAKE it clear
Like other industries do.

43. Thomas Goetz, Wired

44. Thomas Goetz, Wired
“It’s time to redesign medical data”

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

47. It’s perverse
to keep people
in the dark
and call them ignorant
Corollary:

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

50. Urgency:
The Demographic
Crunch

51. 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

52. 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
52

53. My classmate Jay

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

55. Let Hippies Help

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

57. 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.

58. 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

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

60. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
Let Patients Help
Decide What
Matters
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com