“e-Patient Dave” deBronkart

Twitter: @ePatientDavefacebook.com/ePatientDave

LinkedIn.com/in/ePatientDavedave@epatientdave.com

Let Patients HelpReshaping the Care Relationship

in the Age of “e”

Paternalism is PoisonProxies are

HazardousSometimes Advocates Lose

TouchBottom Line: Ask us.

OpenNotes

• RWJF funded study to collect evidence: What does happen when we get to see our records?– Does the world end for doctors?

• First finding: “When are you starting this thing?”

• Second: PROVIDERS DO NOT PREDICT WELL WHAT THEIR CONSUMERS WANT– “Good idea?” Half of HCPs, 95% of patients– “Patients will worry”: 2/3 of HCPs; few patients– “Patients will be confused”: 2/3 of HCPs; few pts

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)• 500,000 by July 25 (285,000 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

We (all) deservemodern,

user friendly software

Thomas Goetz, Wired“It’s time to redesign medical data”

Plus:Modern softwareallows mash-ups!

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

“e-Patient Dave” deBronkart

Twitter: @ePatientDavefacebook.com/ePatientDave

LinkedIn.com/in/ePatientDavedave@epatientdave.com

Let Patients HelpReshaping the Care Relationship

in the Age of “e”