Date post: | 16-Jul-2015 |
Category: |
Health & Medicine |
Upload: | e-patient-dave-debronkart |
View: | 88 times |
Download: | 0 times |
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
Let Patients Help Heal Healthcare
1
Peter Elias • “ The drive home felt like being above tree line
in the Presidentials on a day when Mother Nature wants you to go back home.”
“It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
3
e-Patients.net founder Tom Ferguson MD 1944-2006
Equipped Engaged
Empowered Enabled”
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 weddings
in the U.S. met online – 2011: One in five couples
met online
© e-Patient Dave Re-use is permitted with this notice
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
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
How can it be
that the most useful and relevant and
up-to-the-minute information
can exist outside of traditional channels?
© e-Patient Dave Re-use is permitted with this notice
“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 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.
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)
- HHS Inspector General (15,000/mo Nov 2010)
“It may be more dangerous
not to google “your condition.”
© e-Patient Dave Re-use is permitted with this notice
“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.
© e-Patient Dave Re-use is permitted with this notice
Not liquid Liquid • Moving it takes effort
• Slow and predictable
• Arrivals on unexplained “tracks” are suspicious
• Frictionless – controlling the flow takes effort
• Fast and unpredictable
• “Tracks” everywhere, free
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”
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.”
“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
“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
Half of everyone who’s ever been 65 is alive today
Population today: ~7.0 billion End of World War II: ~2.3 billion
And finally: recognition
from the establishment
© e-Patient Dave Re-use is permitted with this notice
49
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
Let Patients Help Heal Healthcare
56