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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.”

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Patient 2.0: Wired For Health

  • 1. PATIENT 2.0 Wired For Health Patient 2.o Marie Ennis-O’Connor @JBBC Marie Ennis O’Connor @JBBC
  • 2.
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  • 6. “Cultural aggregations that emerge when enough people bump into each other often enough in cyberspace.” - Howard Rheingold
  • 7.
  • 9.
  • 10. “Optimism, for me, came entirely in the form of something doctors would prefer you avoid when it comes to disease: the Internet.” Simona Supekar
  • 11.
  • 12. “The desire to be part of a group that shares, cooperates, or acts in concert is a basic human instinct” Clay Shirky
  • 13. “Community creation and building are enhanced with social media, which allows virtual communities to become very real.” @MeredithGould
  • 14. Community Sense of belonging Identify with community Emotional connection Shared experiences
  • 16. “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.”
  • 17.
  • 18.
  • 19. “An army of patients connected through and fostered by the internet can find things that doctors haven’t seen.” Dave deBronkart
  • 20. “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”.
  • 21. “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.”
  • 22. “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
  • 23.
  • 24. “I’m convinced that our next exponential leap in medical progress depends on us learning from networks of microexperts.” @RZeiger
  • 26. • 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
  • 27. 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.”