Presentation to Maine Quality Counts, March 19, 2015 - physician audience, event title "Patient Provider Partnerships." Maine is WAY ahead of most places at actively developing how to do medicine as a partnership - and much work remains.

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

2. Peter Elias
• “ The drive home felt like being above tree line
in the Presidentials on a day when Mother
Nature wants you to go back home.”

3. “It can be argued
that the largest
yet most neglected
health care resource,
worldwide,
is the patient…”
3

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

7. Howard Luks, MD @HJLuks

8. Pt of future

9. 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
© e-Patient Dave
Re-use is permitted with this notice

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

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

12. Multiple tumors in both lungs
Where’s This From??
12

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

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

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

16. E-Patient Activity 2:
“My doctor prescribed ACOR”
(Now SmartPatients.com)

17. 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

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

20. Question:
© e-Patient Dave
Re-use is permitted with this notice

21. How can it be
that the most useful
and relevant and
up-to-the-minute information
can exist outside of
traditional channels?
© e-Patient Dave
Re-use is permitted with this notice

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

25. 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)
- H
In
G
mo

26. “It may be
more dangerous
not to google
“your condition.”
© e-Patient Dave
Re-use is permitted with this notice

27. “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.
© e-Patient Dave
Re-use is permitted with this notice

28. Web 2.0: “When the web began to harness
the intelligence of its users.” – Tim O’Reilly
28

29. “Liquidity”
transforms
what’s possible

30. 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

32. How a kidney cancer wife
found the info she needed
• No insurance;
no treatment.Then:
• Three bad hospitals;
no help.Then:
• A friend said
“I know a guy...
on Twitter”

33. Regina Holliday’s
Medical Mural Advocacy Project
The Walking Gallery
ReginaHolliday.blogspot.com

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

35. 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.”

36. “Now I know why docs
don’t give you scan data.
I see theVirgin 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

37. “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
THE WRONG DATA. SOME OTHER DUDE’S SCANS.”
@Xeni
Next day: 12-19-2011

41. Who has the most at stake
with the accuracy,
completeness and
availability of the
medical record?

42. Urgency:
The Demographic
Crunch

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

44. My classmate Jay

45. The demographic
imperative

46. The demographic
imperative

47. The demographic
imperative

48. My wifi bathroom scale

49. And finally:
recognition
from the
establishment
© e-Patient Dave
Re-use is permitted with this notice
49

50. Institute of Medicine – Sept 2012
Major New Report:“Best Care at Lower Cost”
50

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

53. First
Christmas

54. Last Friday –
first birthday

55. It’s great
to be alive.

56. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Let Patients Help
Heal Healthcare
56