The document discusses how patients can help in the new world of healthcare. It describes how the patient is the largest yet most neglected healthcare resource worldwide. It outlines how the author's experience with cancer led him to become an advocate for engaged, empowered patients. It argues that with online access to information and connections to other patients, people can participate more actively in their own care and help improve the overall healthcare system.

1. JAMIA, 1997Let Patients Help
in the new world
of healthcare
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com

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

4. Triumph
over circumstance

5. “holy war”

6. 1980: We were #1 in world sales
(Compugraphic)

7. 1983 Liberty Bowl –
Nasty Circumstances
• Average punt: 28 yards!
• 5 touchdowns …
• … only ONE extra point
• Final: Notre Dame 19, BC 18
• The MVP was the losing
quarterback

8. Doug Flutie
– 16 for 37 (43%)
– 3 TDs
– 2 INT
NCAA
passer rating:
124.43

9. Evaluations can be
rough
Some NFL passers who’ve had a ZERO
rating:
• Earl Morrall,
9/19/65
• Bob Griese,
9/28/68
• Johnny Unitas,
10/20/68
• Len Dawson,
11/22/70
• Warren Moon
(2x)
• Norm Snead
(2x)
• Joe Namath
(2x)
• Terry Bradshaw
(3x)

10. Then, triumphs:
• Franchise records for
– Most passing yards
– Most touchdowns
– Most completions
• 2 Super Bowl wins
– Beat my Patriots both times
– And MVP both times
• Only QB ever
to get 4900 yards &
Super Bowl same year
Eli Manning
Two other Ole Miss “winners”
of NFL zero ratings
who went on to triumph

11. Two other Ole Miss “winners”
of NFL zero ratings
who went on to triumph
Then, triumphs:
• Franchise records for
– Most passing yards
– Most touchdowns
– Most completions
• 2 Super Bowl wins
– Beat Patriots both times
– And MVP both times
• Only QB ever
to get 4900 yards &
Super Bowl same year
Eli Manning His dad Archie

12. 3:41 video of Doug Flutie’s
Hail Mary pass,
Thanskgiving Friday, 1984
http://dave.pt/Flutie

13. We were #1

14. But then: hello.

15. Triumph
over circumstance

16. Foundation Principles
• Patient is not a third person word
– Your time will come
• Patients are the ultimate stakeholder
– Yet they’re often omitted from planning the future
• A pivotal force: The urge to care
for our children and elders is strong.

17. 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

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

20. Pt of future

22. 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

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

24. Multiple tumors in both lungsWhere’s This
From??

25. Primary Tumor: Kidney

26. E-Patient Activity 1:
Researching my
condition

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

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

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

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

31. 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

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

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

35. Question:

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

37. “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

38. 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.

39. 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)

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

41. “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.

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

43. “But it’s HARD
to change our
attitudes and habits”

44. It can be done.

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

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

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

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

54. “Now I know why docs
don’t give you scan data.
I see the Virgin 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

55. “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

56. 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

58. Data quality is
essential.
Let Patients Help.

59. Urgency:
The Demographic
Crunch

60. 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

61. 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

62. My classmate Jay

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

64. Dr. Eric Topol

65. AliveCor: iPhone EKG
12/3/12:
“FDA clears iPhone heart
monitor, doctors can pre-
order”
Feb 2014: OTC

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

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

74. Oh wait…

77. Dutch IVF program
had an insane idea
• Give patient couples
a wiki, and six
months to talk
amongst them-
selves. The promise:
• “We’ll give you
anything you decide
– your top ten

78. Top things IVF patients asked for
• I want insurers to reimburse six attempts.
• I want insurance companies to only count
it as an attempt if the embryo gets started.
• I want empathy from my doctor,
not just technical or financial information.
• I want separate waiting rooms
for families who’ve conceived

79. Patch Adams

80. October 2007
2.8 e-Patient Years in Pictures
December 2006 May 2009

83. Triumph
over circumstance

85. JAMIA, 1997Let Patients Help
in the new world
of healthcare
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com