E-Patients: Empowered, Engaged, Equipped, Enabled

E-Patients: Empowered, Engaged, Equipped, Enabled
“e-Patient Dave” deBronkart@ePatientDave
facebook.com/ePatientDaveLinkedIn.com/in/ePatientDavedave@epatientdave.com

“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 SchoolTestimony to the House Ways & Means subcommittee on health, 2004

How I came to be here today
High tech marketing
Data geek; tech trends; automation
2007: Cancer kicker
2008: E-Patient blogger
2009: Participatory Medicine, Public Speaker
2010: full time

JAMIA, 1997
1997

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

Empowered:Speaks up. Expresses wants.Responsible for care choices.

Engaged:Actively involved.Not a passive “care receptacle.”

Note: Just being online no longer qualifies one as an e-patient.

The Engaged Patient, 2006
Some of the 12 items in my pre-appointment “agenda” email

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

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

Primary Tumor: Kidney

E-Patient Activity 1
E-Patient Activity 1:Researching my condition

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

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

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

E-Patient Activity 4:My own social support network(CaringBridge.org - family and friends - journal & guestbook)

E-Patient Activity 5:Tracking my Data

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

E-Patient Activity 6:Start a blog (pay it forward)

John Sharp, Cleveland Clinic:
“If you have not read the e-Patient White Paper, you do not understand the future of medicine.”
John Sharp

Society for Participatory Medicinewww.ParticipatoryMedicine.org
“Participatory Medicine is a movement in which networked patients shift from being mere passengerstoresponsible driversof their health, and in which providers encourage and value themasfull partners.”

Launched last fall: jopm.org @JourPMJournal 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

NLM ePatient Conference
SPM invited to speak
Two e-Patients presented

Medicine 2.0 Congress
Invited by Dr. GuntherEysenbach to deliver the opening keynote at the Medicine 2.0 Congress Toronto, September 2009

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

Why not “Google Earth for my body”?

E-Patients: Empowered, Engaged, Equipped, Enabled

by The Ohio State University Wexner Medical Center on Oct 15, 2010

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