Presentation to Merrimack Valley Section of American Society for Quality: "Improving Healthcare Quality through Patient Participation."

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
e-Patients: Engaged,
Empowered,
Equipped, Enabled
“Patient” is not a third person word

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. Two emerging changes
1.Technological evolution of what’s possible
enabled by IT
2. Sociological change: the “emancipation”
of autonomous patients

4. TheWalking Gallery
ReginaHolliday.blogspot.com

5. #PinkSocks

6. “Patients are the
most under-used
resource in
healthcare”
Informatics pioneer
Dr.Warner Slack,
since the 1970s
6

7. Norman Cousins
“Anatomy of an Illness”
1960s

8. This evening, bear in mind
1.Think about everything you hear
withYOU as the customer/patient.
What will you do?
2. How can we bring ASQ thinking
to the healthcare industry?
(especially overcoming foot-dragging)

9. “Patient” is not a third-person word.
Your time will come.
Always, always think how
you will feel
when it’s your child
or your parent
whose life is at stake
9

10. And, we are – you are –
the ultimate stakeholder
Who else has
more “at stake”
in how well
healthcare works?
Yet we’re often excluded
from talks with
“all stakeholders”
10

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

12. Pt of future

13. 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

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

15. 2007: My “Incidental Finding”
Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder
will be fine …
but there's
something
in your lung”

16. Multiple tumors in both lungs

17. PrimaryTumor: Kidney

18. E-Patient Activity 1:
Researching my condition

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

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

23. 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

24. Surgery & Interleukin worked

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

27. Donald Lindberg MD
Director of the National Library of Medicine
“If I read two journal articles every night,
at the end of a year I’d be 400 years behind.” (2004)
2012:
• 2,200 articles / day
• 10,000 conditions
• Patients can focus on
just their disease.

28. 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.

29. 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)

30. Because of the Web, Patients Can
Connect to Information and Each Other

31. Closed system Open network
Transformation of Knowledge Access
Slide by @ePatientDave 2015
Based on Engelen & Derksen, 2010

32. TheThree L’s to know
if you’re an
Information Bloodhound

33. Problem 1:
Information
LATENCY

34. Scurvy
264
years!

35. Adoption of new practices
years after discovery
The “17 years” thing
From A. Balas, Institute of Medicine, in Yearbook of Medical Informatics 2000
Flu vaccine, year 32:
55% doing it,
45% still not
Beta blockers, year 18:
62% doing it,
38% still not
Diabetic foot care, year 7:
20% doing it,
80% still not
Cholesterol, year 16: 65%
doing it,
35% still not
Creative CommonsAttribution / Share-Alike
May be distributed with this license included

36. Problem 2:
Information
LABILITY

38. Problem 3:
Information
LIQUIDITY

39. “Liquidity”
transforms
what’s possible

40. Not liquid Liquid
• Moving it takes effort
• Slow and predictable
• Arrivals on unexplained
“tracks” are suspicious
• Frictionless – controlling
the flow takes effort
• Fast and unpredictable
• “Tracks” everywhere, free

41. Googling
is a sign of an
engaged patient!

42. “My patients
aren’t like that.
Nobody’s asking
for this.”

44. OpenNotes
What happens
when patients see
their providers’
actual notes??

46. It’s perverse
to keep someone in the dark
then say they’re ignorant.

48. “A new scientific truth
does not triumph
by convincing its opponents
and making them see the light,
Max Planck Nobel Prize, 1918

49. “A new scientific truth
does not triumph
by convincing its opponents
and making them see the light,
but rather because
its opponents eventually die,
Max Planck Nobel Prize, 1918

50. “A new scientific truth
does not triumph
by convincing its opponents
and making them see the light,
but rather because
its opponents eventually die,
and a new generation grows up
that is familiar with it.”
Max Planck Nobel Prize, 1918

51. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
e-Patients: Engaged,
Empowered,
Equipped, Enabled
“Patient” is not a third person word