“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Let Patients Help Participatory Medicine: Reshaping the Care Relationship

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

Foundation Principles Patient is not a third person word Your time will come It’s a collective noun. Patients are the ultimate stakeholder Yet they’re often omitted from planning the future The urge to care for our children and elders is strong.

“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 quoting his colleague, Warner Slack MD Testimony to the House Ways & Means subcommittee on health, 2004

The Engaged e-Patient 12 items in my pre-appointment “agenda” 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??

Primary Tumor: Kidney

E-Patient Activity 1: Researching my condition

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.

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

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

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”

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

Nice curve!

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

Get educated / get engaged

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

“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?

Because of the Web, Patients Can Connect to Information and Each Other (and to Doctors)

“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”

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) - NEJM No. Carolina (No improvement Nov 2010)

“It may be 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 than in the past.

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.”

Participatory medicine brings shared responsibility Blog post, Dec. 2008 Stanley Feld, MD

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

Why not “Google Earth for my body”?

Markle Foundation meeting New York, May 2010 VA, Medicare, Pew Research, Clay Shirky, innovators “Give people their data” “Do people really want it?” “Don’t worry about that” “What will they doooo with it?” “Don’t worry about that” “Why can’t you just use insurance data?” “Read e-Patient Dave” “What format?” “Don’t worry about that.” “But how can we make it work?”

Voilà: Introduced August 2010 VA “My Health eVet” site Medicare Do people want it? First ten weeks: 85,000 downloads by veterans 12,000 downloads by Medicare users ~100,000 downloads

Voilà: 85,000 downloads as of Nov 8 366,000 as of January 8 473,000 by April 16 (213,000 unique) Another 90,000 registrants in DOD & Medicare And the word hasn’t gotten out yet. And the tools to value-ize the data are just starting

Introducing: the Spanish edition of the e-Patient White Paper From “How they can help us heal healthcare” to “Como nos pueden ayudar a sanar la sanidad”

2.8 e-Patient Years in Pictures…

“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 quoting his colleague, Warner Slack MD Testimony to the House Ways & Means subcommittee on health, 2004

“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com Let Patients Help Participatory Medicine: Reshaping the Care Relationship