“e-Patient Dave” deBronkart @ePatientDave #AHRQ facebook.com/ePatientDave LinkedIn.com/in/ePatientdave dave@epatientdave.com “Over My Dead Body” Why Reliable Systems Matter to Patients (and how patients can help)

Find things that interfere with better care (“muda” (waste) in Lean) and remove them. Let our first commitment be to do healthcare better.

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

Save lives first – then compete Foundation Principles: Ethical

“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

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 2010: full time

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

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 12/30/06 – 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

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

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. 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”

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

Booyea!

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. (Changed my blog name)

The “producer-consumer” paradigm is erroneous in today’s world. A radical proposal: Networked patients are producing value, not just consuming.

Cluetrain Manifesto, 1999: “Markets are Conversations” 30 years ago the “marketing funnel” was this: (Graphics by Forrester)

To overlook this (by not training and harnessing this highly motivated resource) would be to squander a substantial resource .at a time of great need.

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.” We simply know more today than we used to.

Now for the “Over my dead body” part (Remember, this will be your family one day)

Get over our denial: Healthcare is risky. Let’s deal powerfully with our failure rates. Beth Israel Deaconess CEO Paul Levy speaking to the Hospitalists Association, Spring 2010: Health professionals are dedicated, smart, highly trained, motivated people But working together in hospitals, they’re the 4th biggest public health hazard. (Brent James, Intermountain Health)

Chance of being killed in hospital per patient day is greater than the chance of being killed per soldier day in Iraq. More are killed in hospitals every year than in the whole Vietnam war 58,000 killed in Vietnam Peak year was 16,892 Providers, patients, vendors, caregivers must all work vigilantly to acknowledge this and intervene

Do you have a higher priority than working on how many you kill by mistake? What e-Patients Want Improve. Be open. Publish your failure rates. Encourage your neighbors to. My hospital posts their failure rates. Example: Central Line Infections - 25% result in death (I cared – I had four central line insertions) Hospital’s blog:

It’s self-evident: If a system is hard for staff to use in real world medical settings, information is more likely to be entered wrong or calculated wrong or read from the screen wrong.

Someday that will harm someone you love. Which one will it be?

Our medical IT systems MUST be usable for the people who care for our loved ones.

System usability does matter. Let’s stop kidding ourselves. Data errors and confusing systems can lead to accidental deaths.

Next opportunity: Let Patients Help

Participatory medicine brings a shift in shared responsibility Blog post, Dec. 2008

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.

Free fuel! HHS new “Community Health Data Initiative” opens vast databases to developers - June 2010 (For you or your competitors)

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

Medicine: Miracles. Health IT: Not so much.

Whose data is it, anyway? Patients = second set of eyes for data quality “Patient as platform & point of integration” What e-Patients Want Gimme My Damn Data

January 2008: Suspicious

February 2009

“When e-Patient Dave pushed the button to send his data to Google Health, what happened was front page news.”

Lesson: Unmanaged data quality produces trainwrecks Data quality risks: Physician errors Clerical errors “Tasty delicious baloney” (upcoding)

How good is your PHR? Mine: 2 specialist visits in September ENT - Septum issue Dermatologist Forehead lesion won’t go away Crusty thing on scalp Toe 4 conditions, 2 treatments received . Here’s all my PHR shows me: DISEMPOWERING

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

Why not “Google Earth for my body”?

“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

Evidence is finally arising that patient access works Help us help ourselves “My dog has a better PHR than I do” Josh Seidman

Cell phones leapfrog drinking water Note: If you include handhelds, the digital divide disappears. http://thapz.blogspot.com/2008/04/cell-phones-leapfrog-drinking-water.html

2.8 e-Patient Years in Pictures…

“e-Patient Dave” deBronkart @ePatientDave #AHRQ facebook.com/ePatientDave LinkedIn.com/in/ePatientdave dave@epatientdave.com “Over My Dead Body” Why Reliable Systems Matter to Patients (and how patients can help)