This document discusses the role of patients being informed and engaged in their own healthcare. It notes that patients have access to information that doctors may not due to publication lags, and that connecting with other patients online can provide valuable information. It highlights examples where patients were able to access treatments and connect with others by being "e-patients" utilizing online resources. The document advocates that patients should be able to access their full medical records and help ensure accuracy to allow doctors to provide the best possible care.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
People Perform Better
WhenThey’re
Informed Better
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2. “It can be argued
that the largest
yet most neglected
health care resource,
worldwide,
is the patient…”

3. e-Patients.net founder
Tom Ferguson MD
1944-2006
Equipped
Engaged
Empowered
Enabled
e-Patients are

5. 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

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

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

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

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

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

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

12. 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

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

15. Question:

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

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

18. “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

19. 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.

20. 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)

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

22. “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.

23. Zoe
When does
autonomy
become
appropriate?

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

25. What happens
when patients see
their doctors’
notes?

27. • 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

28. Urgency:
The Demographic
Crunch

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

30. My classmate Jay

31. What if
the data
in the system
is wrong?

32. Your mother’s physicians
cannot perform
to the of their ability

33. Your mother’s physicians
cannot perform
to the top of their ability
if the facts they’re given
are wrong

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

35. Please:

36. Let
Patients
Help.

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

38. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
People Perform Better
WhenThey’re
Informed Better
38