PATIENT 2.0

Wired For Health

Patient 2.o Marie Ennis-O’Connor

@JBBC

Marie Ennis O’Connor @JBBC

“Cultural aggregations that emerge when enough people bump into each other often enough in cyberspace.” - Howard Rheingold

Convenience

Information

Validation

Sense of Belonging

Peer-to-Peer Support

Hope

Connection

“Optimism, for me, came entirely in the form of something doctors would prefer you avoid

when it comes to disease: the Internet.”

Simona Supekar

“The desire to be part of a group that shares, cooperates, or acts in concert is a

basic human instinct”

Clay Shirky

“Community creation and building are enhanced with social media, which allows virtual communities to become very real.”

@MeredithGould

Community

Sense of belonging

Identify with community Emotional connection

Shared experiences

Activism

“There are two parts to my own blogging: providing a shoulder and being a big mouth about things that must change. To me, these are both equally important.”

“An army of patients connected through and fostered by the internet can find things that doctors haven’t seen.” Dave deBronkart

“It was through reading someone else’s blog that I could finally see the pattern in symptoms in my own son’s life. Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path”. “Would I have seen them anyway? I don’t know. But I credit my connections on social media for helping me keep my eyes open .”to new ideas”.

“Rare disease patients are in desperate need for information about the diseases that invade their bodies, their lives and their family’s lives . I have seen the look in the eyes of many doctors that say, I just don’t know because you are so rare and there are no approved treatments.”

“In 2003, my cardiologist told me I would never meet another SCAD patient. It was just too rare. Today, I “know” more than 1,000 fellow survivors.”

@KatherineLeon

“I’m convinced that our next exponential leap in medical progress depends on us learning from networks of microexperts.” @RZeiger

The Future

• Over and over again, connecting people with one another is what last online. Some folks thought it was about technology, but it’s not. Seth Godin

Seth Godin

Susannah Fox Chief Technology Officer of the U.S. Department of Health and Human Services.

“The most exciting

innovation of the connected health

era is people talking with each

other.”