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Enable e-Patients

with Information.
“e-Patient Dave” deBronkart
Co-Chair, Society for Participatory Medicine
dave@ePatientDave.com

Friends of the National Library of Medicine April 7, 2010


“I want to note especially
the importance of the resource
that is most often under-
utilized in our information
systems – our patients”
Charles Safran MD, Beth Israel Deaconess
and Harvard Medical School
Testimony to the House Ways & Means
subcommittee on health, 2004
How I came to be here today
• High tech marketing
• Online community leader since 1989
• Data geek; tech trends; automation
• 2007: Cancer kicker
• 2008: E-Patient blogger
• 2009: Participatory
Medicine,
Public Speaker
Foundation Principles
• Patient is not a third-person word.
• Your time will come.

• The right of a desperate person


to try to save themselves
• The right to know what your options are
• The right to pick up your data
and pursue an option elsewhere
“The point isn’t that
patients know more
than doctors.
The point is that
patients can help
if they know what
they’re doing.”

And boy are we


motivated.
My story, Part 1:
Cancer
The Incidental Finding
Routine shoulder x-ray, Jan. 2, 2007

“Your shoulder
will be fine …
but there’s
something
in your lung”
“Textbook”
Stage IV,
Grade 4
Renal Cell
Carcinoma

My lesions matched this


illustration of Stage 4 RCC
on Proleukin.com,
with many more.
Facing the Reaper
My mother
My daughter
After the shock
you’re left with the question:
What are my options?
What can I do?
Get engaged.
Get it in gear.
Do everything you can.
Go “e.”
E-Patient Activity 1:
Reading (and sharing)
my hospital data online
E-Patient Activity 2:
“My doctor prescribed ACOR”
(Community of my patient peers)
Patient communities are responsive.
People discuss what to do, what to know.
At virtually no cost. (Cheap. Not free.)

ACOR is great. I posted two messages


tonight and got responses in 4 and 11
minutes. One responder also sent a
private note mentioning Robin and Cathy.
The other responder was Cathy. :)

Through that list I've also found


several other useful sites.
What I didn’t find in the literature
• Seeking treatment
• Get to a specialist center
• Get IL-2 if you can (part of broader “What are my options?”)
• Don’t get something else first – might not qualify for IL-2

• Being in treatment
• What to expect in hospital and at home
• What the side effects are really like – first-hand.

> Patients talk about what patients want to know


E-Patient Activity 3:
My own social support network
(CaringBridge.org - family and friends - journal & guestbook)
The treatment worked.
Target Lesion 1 – Left Upper Lobe

Baseline: 39x43 mm 50 weeks: 20x12 mm


What next? Pay it forward.
Start a blog, to teach.
Part 2:
Discovering “e-patient”
(January 2008)
John Sharp,
Cleveland Clinic:
“If you have not read
the e-Patient White
Paper, you do not
understand the future
of medicine.”
Dr. Lindberg: 400 years.
“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.


The lethal lag time: 2-5 yrs
The time it takes after successful research is completed
before publication is completed and the article’s been read.

During this time,


people who might have benefitted can die.

Patients have all the time in the world


to look for such things.
Launched last fall: jopm.org @JourPM

Journal of
Participatory
Medicine
• Taking it
“from anecdote
to evidence”
• Peer reviewed for
and by providers,
patients, and all
• Open access (free)
• Co-Editors are a physician and lay editor/patient
Industrial-Age Medicine
Healthcare
before the
internet:

The ability to create value belonged to those


who controlled the “means of production” (information)
Information-Age Medicine
Healthcare
with the
internet:

Internet access to information


means all of us can contribute, create value, participate.
That’s participatory
medicine.
Doc Tom foresaw it all
within months of the Mozilla browser’s birth
in April 1994
Participatory medicine
also brings
a shift
in shared
responsibility
Psoas muscle
(My kidney tumor was encroaching on it) my rendering on VisibleBody.com
Why not “Google Earth for my body”?
Part 3: Speak, teach
Invited by Dr. Gunther Eysenbach to deliver
the opening keynote at the Medicine 2.0 Congress
Toronto, September 2009
Part 4: Get to work. Create change.
2.8 Years in Pictures…
October 2007
May 2009
December 2006

September
2009
Engaged patients can help.
We’re motivated.
Let us.
Help us.
Enable e-Patients
with Information.
“e-Patient Dave” deBronkart
Co-Chair, Society for Participatory Medicine
dave@ePatientDave.com

Friends of the National Library of Medicine April 7, 2010

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