e-Patients: Sharing the knowledge, sharing the work

The e-Patient Movement
Engaged e-Patients are
Changing What’s Possible in
Healthcare

“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave (introduce yourself please!)
LinkedIn.com / in / ePatientDave
dave@epatientdave.com
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

“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
quoting his colleague, Warner Slack
MD
Testimony to the House Ways & Means
subcommittee on health, 2004

How I came to be here
• A graphic arts technology marketing guy
who got sick and experienced health care
• 2007: Cancer
• 2008: blogging
• 2009: Participatory
Medicine, Speaking
• 2011: international


Doc Tom said, e-Patients.net founder
“e-Patients are E quipped MD
Tom Ferguson
Engaged
1944-2006

Empowered
Enabled”

Patient Engagement
has nothing to do
with politics and
who pays for what.


It has everything to do
with the relationship:
sharing the knowledge,
the authority,
the information,
the work.


Pt of future


Me? An indicator • Who’s getting online:
– 1989: Me (CompuServe sysop)
of the future?? – 2009: 76% of US adults online

• 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


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

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


The Incidental Finding
Routine shoulder x-ray, Jan. 2, 2007

“Your shoulder
will be fine …
but there's
something
in your lung”

Classic
Stage IV,
Grade 4
Renal Cell
Carcinoma
Illustration on
the drug company’s
web site

Median Survival:
24 weeks

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

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


 e-patients.net

Dr. Lindberg: 400 years
“If I read two journal articles every night,
at the end of a year I’d be 400 years behind.”

The lethal lag time:
2-5 years


“These conclusions
are no more anti-doctor
or anti-medicine
than Copernicus and Galileo
..were anti-astronomer.”

Informed people can contribute
more today than in the past.


Gutenberg’s bible
1465
Information
became
available
to a new class
of people.
They didn’t
need experts
to read and
interpret it.

Martin Luther’s 95 Theses
495 years ago this week

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

Cluetrain Manifesto, 1999:
“Markets are Conversations”
(Graphics by Forrester)


“The Wicked Bible”
(1631)
New
technology
brings new
power and
new risks.
Expect it!
Plan for it.
Don’t be
surprised.

Obstacle to adoption:
“But patients
don’t understand
these things.”


If the data’s unclear
let’s MAKE it clear
Like other industries do.


Thomas Goetz, Wired


Thomas Goetz, Wired
“It’s time to redesign medical data”


Same data –
better software


The information’s
clearer


The family’s
enabled and
empowered.


Psoas muscle
(My kidney tumor was encroaching on it) my rendering on
VisibleBody.com


Why not “Google Earth for my
body”?


Revealing the
information
hidden in the data


Information
is
empowering.


Hiding it
is
disempowering.


Empowerment:
Knowing what you want.
Asking for it.


Activity $99
Fitbit


Weight $159

Withings WiFi Scale


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


Guess what:
HE can’t see MY device data.


Obstacle to adoption:
“But patients
don’t want this.”


Until people realize
they have the power
to ask,
they don’t ask


We are at the start
of a new
cultural awakening.


Enabled by putting
information in the hands
of people who can use it


2012
Major new report: “Best Care at Lower
Cost”


Gutenberg’s bible
Information
became
available
to a new
class of
people.

Let Patients Help.


Participatory Medicine
Sharing the knowledge
Sharing responsibility
Sharing information
Sharing the work

Thank you.


e-Patients: Sharing the knowledge, sharing the work

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