Playing a PARTICIPATORY ROLE: Being empowered does not make me an oncologist. Otoh, since I got involved EPSWG….white paper – please read – see what ppl have been doing for 10 years.   Kansas ACOR pt – "my onc says he took a course in RCC 5 yrs ago so I'm all set" – no….   I could engage w the leading RCC specialist in the NE about the validity and relevance of the data he'd just presented. It's the latest peer-reviewed data …but not relevant  

Give us speedometers. Help us heed your advice. FDA Device Interoperability Workshop January 25, 2010 “e-Patient Dave” deBronkart @ePatientDave

Patient is not a third-person word. Your time will come – you will care about this.

I’m like JFK: “They sank my boat”

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

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

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

The treatment worked. Target Lesion 1 – Left Upper Lobe

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.”

Changing Nature of the Relationship Author of this slide: Danny Sands MD, MPH Knowledge Asymmetry Knowledge Symmetry Paternalism Participation Patient-Physician Consumer-Provider

“How can patients participate if they can’t see their information?”

2009: Society for Participatory Medicine “a cooperative model of health care that encourages and expects active involvement by all connected parties.” Led by a partnership of physicians and patients

We publish weight guidelines and encourage using a scale

What if we published carefully researched speed guidelines but no speedometers? Quanitified Patient d.ppt Quanitified Patient d.ppt

How can we accelerate? Lessons from High Tech Object-oriented programming Waterfall vs Agile Innovation flourishes in a robust ecosystem

Lessons from High Tech #1: Object-Oriented Programming Encapsulation Unit testing Test the interface, not the internals Lets people freely develop new methods without altering the rest of the workflow Dijkstra: Father of structured programming (“A Case Against the GOTO Statement”) Turing Award winner in 1972

What changed? Moore’s Law. The penalty for changing your mind dropped dramatically. Flexibility became affordable.

Lessons from High Tech #2: Agile replaces Waterfall Waterfall Decide what you want, and plan it. Efficient. Allows optimizing. “Make up your mind!!” Agile development You can’t figure it out in advance anymore. Deal with it. Besides, things change so fast, the target moves. So: get started and adapt as you go along. KEEP YOUR OPTIONS OPEN. LinearBlue.com

Lessons from High Tech #3: Rich ecosystems  innovation Groups.Drupal.org

Lessons from High Tech #4: Combinatorial Explosion Scenario: 2,000 models of Dell PC 1,000 models of HP printer To test each in isolation: 3,000 tests to do To test all combinations: 2 million tests

Do the math. Compare… Testing 2,000,000 combinations, vs 3,000 individual items, is… 667 times more work Budgetary impact Time (months/years) Drastic impact on innovators’ payback; impedes innovation and consumer benefit

We can’t get there in time doing it that way.

I want modern mash-ups.

Old School (literally)

Modern: psoas muscle (My kidney tumor was encroaching on it) my rendering on VisibleBody.com

Why not “Google Earth for my body”?

Quanitified Patient d.ppt Quanitified Patient d.ppt Don’t Leave Me This Way

Give us speedometers. And tachs. And pressure gauges. Empower and Enable. Help us heed your guidelines.

I can do a lot better if I know how I’m doing. Help us heed your guidelines. @ePatientDave (Twitter) facebook.com / ePatientDave LinkedIn.com / ePatientDave dave@ePatientDave.com (603) 459-5119 www.ePatientDave.com

Give us speedometers. Help us participate responsibly in our care. @ePatientDave (Twitter) facebook.com / ePatientDave LinkedIn.com / ePatientDave dave@ePatientDave.com (603) 459-5119 www.ePatientDave.com