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“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
E-Patients:Empowered, Engaged,
Equipped, Enabled.
There’s been a profound shift
in where competence and information
can be found.
It profoundlyalters what
patients can knowand contribute.
How I came to be here
• High tech marketing• Data geek; tech trends; automation• 2007: Cancer discover & recovery
• 2008: E-Patient blogger
• 2009: ParticipatoryMedicine, Public Speaker
• 2010: full time
• 2011: international
e-Patients.net founderTom Ferguson MD1944-2006
EquippedEngagedEmpoweredEnabled”
Doc Tom said,“e-Patients are
Me? An indicator of the future??
• Who’s getting online:– 1989: Me (CompuServe sysop)– 2009: 83% of US adults (Pew)
• Who’s romancing online:– 1999: I met my wife (Match.com)
– 2009: One in eight weddingsin the U.S. met online
– 2011: One in five couplesmet online
The Incidental FindingRoutine shoulder x-ray, Jan. 2, 2007
“Your shoulderwill 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
After the shockyou’re left with the
question:What are my options?
What can I do?
Get engaged.
Get it in gear.
Do everything you can.
E-Patient Activity 2:“My doctor prescribed ACOR”
(Community of my patient peers)
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
Surgery & Interleukin worked.Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
Question:
How can it be
that the most usefuland relevant and
up-to-the-minute information
can exist outside of traditional channels?
“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
The lethal lag time: 2-5 years
During this time, people who might have benefitted can die.
Patients have all the time in the worldto look for such things.
The time it takes after successful research is completedbefore publication is completed and the article’s been read.
Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
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)
Closed system Open network
Transformation of Knowledge Access
Slide by @ePatientDave 2015 based on Engelen & Derksen 2010 at
Next lesson:When assets digitize,
things change fast.
Dr. Eric Topol
AliveCor: iPhone EKG12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order”Feb 2014: OTC
Cory DoctorowCo-editor of Boing Boing
Doctorow’s First Law:“Any time someone puts a lock on something that belongs to you, and won’t give you a key, they’re not doing it for your benefit.”
Case Study:Hugo Campos wants his ICD data
Full,unrestricted& convenient access.
Doctor Experience
Patient Experience
New I.P. decision on patient data access
W e d e m a n d a
MEDICALRECORDSPIGOT!It’s all about ME, so it’s MINE!Take action: bit.ly/healthspigot
“Data Liberación!”
Todd ParkInnovatorEntrepreneurHHS Chief Technical OfficerUS Chief Technical Officer
Get Involved in Your Medical Data.
Quality Matters.
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 paper.”
Dec. 1, 2011:Live blogs (instagr.am) àher first mammogram.
Diagnosis: uh-oh.
Gets her (scan) data and(Dec. 18) live-tweets trying to view it.
@XeniOne of Cory’s co-editors
“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.”
@XeniLive tweeting, 12-18-2011
“So I figure out how to open my bone scan data. I look.”
“WTF.” “What’s that dick-shaped ghost-shadow thing—it looks like I have a penis!”
“I call a hacker pal. ‘That, Xeni, is a dick.’” “Look at metadata more carefully. THEY GAVE ME THE WRONG DATA. SOME OTHER DUDE’S SCANS.”
@XeniNext day: 12-19-2011
“So, the other thing that arises from realizing you’ve been given someone else’s medical imaging data is: does someone else have mine?”
“…horrified... Not even because it’d upset me that much if it were made public? But makes me lose faith in Q of service.”
@XeniNext day: 12-19-2011
You know a movementis a social revolution
when artists and musicians show up.
You know a movementis a social revolution
when artists and musicians show up.
MOVIE
Video
How a kidney cancer wife found the info she needed
• No insurance; no treatment. Then:
• Three bad hospitals;no help. Then:
• A friend said“I know a guy...on Twitter”
Regina Holliday’sMedical Mural Advocacy Project
The Walking GalleryReginaHolliday.blogspot.com
Someday, 3D printing will move
“down market”to consumers
Steven Keating
Googling is a signof patient
engagement!
Predictably,the empire starts
to strike back.
It can look ludicrous.
Post on LinkedIn:dave.pt/belgiangoogle2The ad videos:dave.pt/belgiangoogle3dave.pt/belgiangoogle4
Meanwhile,evidence growsthat the current
paradigm is collapsing
Reported June 2015
Reported June 2015
#WeAreNotWaiting
#NightScout
#DIYPS(“Do-it-yourself Pancreas System”
#DIYPS(“Do-it-yourself Pancreas System”
#DIYPS(“Do-it-yourself Pancreas System”
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
E-Patients:Empowered, Engaged,
Equipped, Enabled.
