“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com The Copernican Shift The World Looks Different with the Patient at the Center

Pumpkin House, Kenova WV Steven Wayne Rotsch, Facebook, 10/30/2011

E Today’s lecture is brought to you by the letter...

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

How I came to be here High tech marketing Data geek; tech trends; automation 2007: Cancer kicker 2008: E-Patient blogger 2009: Participatory Medicine, Public Speaker 2010: full time

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

“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 Cause? Mostly due to unregulated fee-for-service payments and an over reliance on rescue/specialty care. This is stark evidence that the U.S. health care industry has been failing us for years. “Commonly cited causes for the nation's poor performance are not to blame - it is the failure of the delivery system!!” - “Unaccountable Care Organizations” * Peter A. Muennig and Sherry A. Glied Health Affairs Oct. 7, 2010 Dubuque, Iowa USA 2011 Source: Paul Grundy MD, head of worldwide healthcare, IBM

SPM’s blog

SPM’s journal, JoPM.org

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 2011: One in five couples met online

JAMIA, 1997 1997

The Engaged 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 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)

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 was the onc I was already being steered to

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

“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.

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.”

“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.

Charlene Li (“Groundswell”) “Social networks will be like air” Web 2.0: “When the web began to harness the intelligence of its users” – Tim O’Reilly

House to his residents, 2012 ? “OK, you’re out of ideas. So, what? You think what you learned three years ago is all the knowledge there is??” “You think nothing new has come up since then??” “You’re busy; have you asked the family if they can dig up anything useful?”

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

Cluetrain Manifesto, 1999: “Markets are Conversations”

17 first hand stories

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”

Robin Martinez Listowner, Kidney-Onc list [ACOR.org] Kidney-Onc isn’t “work.” It’s more like running in a marathon that never ends. It’s for a good cause. Sometimes the runner runs faster and sometimes slower; but the running is not going to stop unless the runner gives up hope. Hope and camaraderie are what we live on. Fortunately, we create our own.

This is Ben Sent home to die at 7 mos (2 months ago) Desperate, the family got online and found e-patient families. Ben got surgery, is well now.

“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

Patient Centered Outcomes Patient Reported Outcomes How about... Patient Defined Outcomes??

2.8 e-Patient Years in Pictures…

Complexity can clear up when you get the model right. Source: Wikipedia, Copernican Revolution

Additional Sessions 2:00-3:00: Working with engaged patients when they come to you armed with knowledge With Robin Martinez 3:15-4:15: What is patient engagement? What specifically is it (two models) and how can we develop it?

“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com The Copernican Shift The World Looks Different with the Patient at the Center