Companion video: http://www.epatientdave.com/2017/02/06/the-lost-keynote-video-aanp-2014/ The 2014 annual meeting of the American Association of Nurse Practitioners, in Nashville. One of my favorite talks of all time - nurse practitioners are by nature highly committed to putting power and competence in the hands of patients. Connects to the social roots of the movement, particularly the women's movement, and emphasizes the patient's view: is it really a PROBLEM that we're surviving long enough to get chronic conditions?? Standing ovation.

1. JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
dave@epatientdave.com Skype: ePatientDave
Let Patients Help
Heal Healthcare

2. Learning Objectives
• State three examples of what the “e” in
e-patient stands for.
• Name two fundamental assets the internet
lets patients access, which alter what they can
contribute in healthcare
• State who, according to Slack & Safran, is the
most under-utilized resource in healthcare

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
• 2011: international

5. “I want to note especially
the importance of the resource
that is most often under-
utilized in our information
systems – our patients”
Charles Safran MD, Beth Israel Deaconess
quoting his colleague,Warner Slack MD
Testimony to the HouseWays & Means
subcommittee on health, 2004

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

7. “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.”

9. Pt of future

10. 10

11. 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

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

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

14. PrimaryTumor: Kidney

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

16. Facing the Reaper

17. My mother

18. My daughter

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

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

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

22. 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

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

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

25. 25

26. 26

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. “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

30. 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.

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

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)

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

34. “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.

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

36. Urgency:
The Demographic
Crunch

37. 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

38. 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

39. My classmate Jay

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

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

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

43. Khan Academy
High quality medical information – free!

48. And finally:
recognition
from the
establishment

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

50. 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.

51. June 11, 2014

52. June 11, 2014
• Patient advisory panel
• Patient peer review
of research papers
• Authors are to document
how they involved patients in defining
the question and outcome measures

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

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

56. Thank you
for your training
and the work
you do.

57. JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
dave@epatientdave.com Skype: ePatientDave
Let Patients Help
Heal Healthcare