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Title: Cognitive Surplus: Creativity and Generosity in a Connected Age
Author(s): Clay Shirky
Number of Referenced Stories: 2

Publication Year: 2010
ISBN: 9781594202537
Dewey Decimal Class: 300
Dewey Decimal Division: 303
Author Website:

    PATIENTSLIKEME: An Organization, A Brand and A Behavioral Definition

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B's Buzz

A featured story, PatientsLikeMe describes an experimental web service begun in 2004 that is both a behavioral definition and a service burning its brand into the minds of suffering patients.  They enable patients with a similar life altering disease like MS (Multiple Sclerosis) or an even rarer one like PSP (Progressive Supranuclear Palsy) to get unfiltered answers and insights.  This includes details relating to outcomes and medication effectiveness neither doctors or pharmacists have the time or inclination to provide firsthand.

PatientsLikeMe has outflanked a once rigid set of definitions and laws around American patient privacy.  Indeed, the definition PatientsLikeMe compresses many complex issues into a single made up word to describe a solution to unmet patient needs.  As Clay Shirky explains:

Currently, most health-care data are inaccessible due to privacy regulations [in the form of a series of U.S. laws and legal definitions] or proprietary tactics.  As a result, research is slowed, and the development of breakthrough treatments takes decades.  Patients also can’t get the information they need to make important treatment decisions.  But it doesn’t have to be that way.  When you and thousands like you share data, you open up the health-care system.  You learn what’s working for others.  You improve your dialogue with your doctors.  Best of all, you help bring better treatments to market in record time.

This story has similarities to what Linus Tovalds did through the cooperative creation of open source, which continues to spawn other behavioral definitions that are disruptive yet positive.  PatientsLikeMe is but one story among many in Cognitive Surplus B. highly recommends along with the complementary books Free by Chris Anderson and Wisdom of Crowds by James Surowiecki.  All three books are available in the store. 

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