Monday, May 31, 2010

When Patients Meet Online, Are There Side Effects? -

COULD we cure diseases faster, or at least better control them, through crowd-sourcing?

That is the premise behind social networking sites like, which offer online communities for patients and collect members' health data for research purposes.

PatientsLikeMe provides forums where more than 65,000 members with epilepsymultiple sclerosis and more than a dozen other disorders are encouraged to share details about their conditions and the success or pitfalls of specific drug treatments.

"When patients share real-world data, collaboration on a global scale becomes possible," the site says. "New treatments become possible."

Moreover, in a world where serious side effects often emerge only years after a new medication enters the market, such real-time information from real-world patients may also provide an early warning signal for drug safety problems.

PatientsLikeMe has an innovative for-profit business model, too. It sells health data, gathered from member profiles but with certain identifying information removed, to drug makers and others for scientific and marketing research.

Jamie Heywood, the company's chairman, says both patients and drug makers delve into that data to meet their own needs.

Members can seek out patients of the same age, sex, and disease progression, whose profiles are displayed on the site, to see which drugs or doses worked for them. Drug makers can pinpoint subgroups — say, severely depressed middle-aged men — who reported the greatest improvement on a particular medication.

"What we have done is made a system that allows you to think about personalized medicine," says Mr. Heywood. He co-founded the site in 2004 with his brother Ben and a friend after another brother, Stephen Heywood, developed amyotrophic lateral sclerosis, or A.L.S., commonly known as Lou Gehrig's disease. (Stephen died in 2006.)

But pharmaceutical crowd-sourcing also raises important questions about the trade-off between the benefits of information sharing and the risk of patient exploitation.

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