Astounding #RareDisease e-patient story: Jill Viles, via @SusannahFox tweets

Longtime readers of this blog know that for years Susannah Fox was its heart and soul. She was a devoted friend of “Doc Tom” Ferguson, creator of the e-patient concept in the 1990s, and for years at Pew Research she was the dependable guru of Pew’s health research. (For a summary of her work see the Pew Health Tips page.) So anytime she says “Everyone. Read this” I stop what I’m doing.

She said it an hour ago, so I did. Here’s the sequence of tweets she posted. The story is an astounding demolition of the idea that patients have nothing to offer. Here’s the real story, told by ProPublica and This American Life.

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Posted in: e-patient stories | pts as teachers | research issues

 

 

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