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

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 Speaking 2010: Full time

Patient is not a third-person word. This is personal. Your time will come. The right of a desperate person to try to save themselves Foundation Principles: Personal

The internet gives patients unprecedented access to information and knowledge. This changes everything – for people who harness it. IT innovators are fueled by information. Some are better at taking up the fuel than others. Disruptive innovation is beginning Foundation Principles: Business/Technical

“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

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-Edited by physicians and a lay editor/patients

Pt of future

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 Our honeymoon in Paris, June 2000

I’m like JFK: “They sank my boat”

JAMIA, 1997 1997 December 2006 – visited my primary, Dr. Danny Sands (pioneer of doctor-patient email)

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 Grim Reaper

My mother

My daughter

After the shock you’re left with the question: What are my options? What can I do?

Get engaged. Get it in gear. Do everything you can. Go “e.”

“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 During a serious disease, the chance to be engaged (or to help) is a huge mood booster, infinitely better than “I’m helpless / there’s nothing I can do”

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

Getting by – one day at a time

Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe

Nice curve!

What to do with my free replay?

September: “Go out and play”

November: Pay it forward – Start a blog

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

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.

Airplane observations Sitting next to a physician en route to the National Patient Safety Foundation Conference, May 2010 “I have to take my laptop into the OR” “We don’t have, physically in the building, what I can find online that I might need” “The knowledge space is growing so fast”

Death by Googling: Not. (Dr. Gunther Eysenbach, Europe) . Compare with “To Err is Human” (Famous report in 2000 by the Institute of Medicine estimating that there are 44,000 to 98,000 accidental killings in US hospitals every year)

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

“These conclusions are no more anti-doctor or anti-medicine than Copernicus and Galileo ..were anti-astronomer.” Patients can simply contribute more today.

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

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

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

That’s participatory medicine.

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

It’s fueled by information.

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

Why not “Google Earth for my body”?

A shift in responsibility, too

“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

2.8 e-Patient Years in Pictures…

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