@1:54

****************** SEVEN WHEELCHAIRS *****************

#3:38 + 23 = 4:01

@4:01 + 22 = 4:23

@4:23 + 22 = 4:45

@4:44

@5:25

@6:10

@6:34

DIARRHEA WHEN YOU CAN’T HURRY If you're gonna break a leg, do it while you're passed out I was back at work, went to bathroom, passed out. Woke up, femur in V shape. So – break it while passed out, don't wake up until you're in shock, which lasts until medics gave morphine. Ambulance, potholes on 93; lamaze Carpentry on my leg Wound got infected – wife w vet skills took digital camera ("looks infected to me") Ortho said yup – no need to come down to hospital – take those antibiotics you have script for

Englewood Hospital Englewood, NJ 1994

In the medical trenches, information is power. “e-Patient Dave” deBronkart @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientdave dave@epatientdave.com

Ability to create value in healthcare depends on access to information and access to wisdom.

The internet makes both possible in ways that were unimaginable 20 years ago.

“Information is currency. You are a bank. Open up.” Susannah Fox Pew Internet & American Life Project to the NIH, May 2010

That’s where medical librarians come in.

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

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 Foundation Principles

“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

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 Patients are the most underutilized resource. Let them/us help. Foundation Principles

Doc Tom said… Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are

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 Medicine www.ParticipatoryMedicine.org “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

Journal of jopm.org @JourPM 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 a lay editor/patient

Note: participatory medicine brings a shift in shared responsibility

I’m like JFK: “They sank my boat”

The Incidental Finding Routine shoulder x-ray Jan. 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 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks

Facing the Reaper

“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)

Finally, a Symptom (6 weeks post-x-ray) Some tips…

The Interleukin worked. Target Lesion 1 – Left Upper Lobe

What to do with my free replay?

Start a blog (go social)

Get educated / get engaged

“e-Patient?” I know one when I see one.

Question:

How can it be that the most useful and 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

It’s about organizing all that information.

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.

It’s about finding new information when the heat is on.

Airplane observations Sitting next to a physician en route to the National Patient Safety Foundation Conference, last week “I have to take my laptop into the OR with me” “We don’t have, physically in the building, what I can find online” “The knowledge space is growing so fast”

“All knowledge“ is in constant beta” Gilles Frydman, ACOR founder ICSI / IHI Colloquium, May 2010

Even for doctors, it’s about access to the latest information. Online.

Death by Googling: Not. (Dr. Gunther Eysenbach, Europe) . Compare with IOM’s “To Err is Human”: 44,000-98,000 deaths/year from preventable errors

“Arguably it’s more dangerous not to google “your condition.”

People need information like this. For safety’s sake.

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

How can we better help people find good information when they need it?

Doc Tom had an early vision of how our access to information would turn healthcare …on its head…

Industrial-Age Medicine The ability to create value belonged to those who controlled the “means of production” (information) Healthcare before the internet:

Information-Age Healthcare Internet access to information means all of us can contribute, create value, participate. Healthcare with the internet:

That’s participatory medicine.

Doc Tom foresaw it all within months of the Mozilla browser’s birth in April 1994

In the medical trenches information is power.

“e-Patient Dave” deBronkart @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientdave dave@epatientdave.com Free the power! MedLibs FTW.