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April 26, 2010

PATIENTS SHARING DATA ONLINE
IS OPENING UP HEALTHCARE
 

Wired magazine executive editor Thomas Goetz discusses the impact of technology and the online sharing of information on health decisions with Pew Research Center's Suzannah Fox in a video from PRConversations.

"Healthcare has been locked up in this kind of regulatory amber that makes it seemingly impossible to expose to the light of progress and technological innovation," says Goetz, who penned "The Decision Tree: Taking Control of Your Health in the New Era of Personalized Medicine." "But what you're seeing is this undercurrent of technology companies -- CureTogether.com, PatientsLikeMe.com -- that aren't coming out of the healthcare establishment. They are coming out of innovators -- engineers, Silicon Valley.

The first step, says Goetz, is patients sharing stories and gaining a sense of emotional comfort in relating an experience with a chronic illness.

"The second step, which is now happening, is the possibility to aggregate that, learn from it and to create new research models," he said.

Goetz said companies like CureTogether and 23andMe.com, the genetics company which scans a person's genome, represent this trend.

Goetz also addresses safety concerns about sharing and acting on health data online in the clip.

Said Fox, who recently penned a report on chronic disease and the Internet: "There's the sense that if we can get everybody to share their symptoms and share what's going on in their lives, we can get to better decisions," she said.

 
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Responses:
 

laura carabello, CPR Communications (4/29):
Here's the problem: The government has everyone scared to death about violating HIPAA -- those on the inside of healthcare recognize the paranoia. But maybe it's time for all of us to stand up to these sometimes untenable regs -- and let's get on with sharing information, for the good of all.


Strauss Media Strategies
 
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