Opening keynote. Focus on the patient as an active partner in improving safety by detecting errors.

1. JAMIA, 1997Let Patients Help
Improve Safety
and Quality
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com

3. Today’s Wall Street Journal

4. Yo,Wall Street:
it ain’t just theVA!

5. Relation between cost & quality
Elliott Fisher at Health Datapalooza 6/2/14
(Answer:
NO relation
between cost
& quality.
Enormous
variation!)
(What if everyone
started doing
what the lower left
does?)
Deathrate!
Cost of the care !

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

11. 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

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

14. Pt of future

16. 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

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

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

19. Multiple tumors in both lungs
Where’sThis From??

20. PrimaryTumor: Kidney

21. E-Patient Activity 1:
Researching my condition

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

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

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

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

26. 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

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

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

30. Question:

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

32. 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

33. 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.

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

39. No clinician
can possibly perform
to the top of their
training if the data
they’re given is wrong.

40. “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

41. “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

42. 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.”

44. Data quality is
essential.
Let Patients Help.

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

46. Obstacle to adoption:
“Patients will
flood us with
time-wasting
questions.”

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

49. Announced this past Monday

52. • 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!

53. 2012:
recognition
from the
establishment
© e-Patient Dave
Re-use is permitted with this notice

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

55. 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.

56. Gorgeous, wonderful new
book by Parkinson patients

57. Final Lesson:
When assets digitize,
things move fast.

62. Someday 3D printing
will move downmarket
to consumer level

63. Oh wait…

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

69. JAMIA, 1997Let Patients Help
Improve Safety
and Quality
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com