This is my X-ray. What you see there is an implantable cardiac defibrillator or I.C.D. I am at risk of sudden cardiac arrest and the device is there to protect me in case it happens.

Doctors, on the other hand, have 24-7, full, unrestricted access to this data. Some manufacturers even offer doctors the convenience of data access from their mobile devices.

Compare that to the patients’ experience. The patient experience is limited to getting hard copies of interrogation reports every 6-12 months when we come into the clinic for follow up. The irony is that PATIENTS are the ones living with heart disease. We are the ones who would benefit from timely and convenient access to information.

So, I collect a variety of HEALTH DATA about myself in order to paint a HIGH-RESOLUTION picture of my health. I use a $99 Fitbit to track my physical activity.

I have a blood pressure cuff that connects to my iPhone which I use to track my blood pressure.

I use a Wi-Fi scale to track my weight.

And more recently, I started using a Zeo to track the quality of my sleep. I get a ton of data from these and other devices that range from $100-$150.

But from my $30,000 defibrillator I get absolutely no data whatsoever.

So, I do what I can with the resources I have. So I created a Google spreadsheet that connects to a Web form that I use to track my arrhythmias from my mobile devices. This has given me some valuable insight into what triggers some of the arrhythmias and what I can do to prevent them from happening.

So, whose data is it anyway? Does it belong to medical device companies so they can use it for post-market surveillance of their products? Or does it belong to patients so we can use it to paint a more detailed picture of our health and live longer and healthier lives? I recently had the opportunity to ask this question to the FDA, to which they replied that the agency DOES NOT regulate the RAW DATA collected and stored by the manufacturers of medical devices. It’s becoming clear to me that change is not going to come from the top. And that we’ll need some really creative thinking and disruptive ideas to solve problems like mine.

“e-Patient Dave” deBronkart Twitter: @ePatientDave www.ePatientDave.com Bridging the Gap between I.T. and Participatory Health

Who owns the data? My view (on CafePress.com)

“Patient” is not a third person word. Your time will come.

How I came to be here today High tech marketing (graphic arts) Data geek; tech trends; automation 2007: Cancer kicker 2008: E-Patient blogger 2009: Society for Participatory Medicine Public speaking Washington 2010: Full time 2011: “Boot Camp”

“The resource that is most often under-utilized in our information systems –. our patients”

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

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

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

Facing the Grim Reaper

My mother

My daughter

Get engaged. Get it in gear. Do everything you can.

E-Patient Activity 1: Researching my condition

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

Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks

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!

OpenNotes

Full, unrestricted & convenient access. Doctor Experience

Patient Experience

$99 Activity Fitbit

$129 Blood Pressure Withings BP Monitor

Weight Withings WiFi Scale $159

$149 Sleep Zeo Sleep Manager

No data Implanted Cardiac Defibrillator

Raw data

Hugo Campos wants his ICD data

on.TED.com/Dave

E-Patient White Paper

2.8 e-Patient Years in Pictures…

“e-Patient Dave” deBronkart Twitter: @ePatientDave www.ePatientDave.com facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Please: Let Patients Help