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Thomas Goetz’s story on PatientsLikeMe in today’s NY Times is required reading. One can imagine hordes of physicians gagging on their Sunday morning coffee:

When patients take the reins of their own treatment, what role do doctors play? What’s to keep patients from misinterpreting the streams of data and finding false hope — and what’s stopping them from embarking on unproven and even risky treatments or dosages? And what happens if the real-world information at PatientsLikeMe contradicts the clinically proved protocols of medical science?

I’ll tell you exactly what happens: Human sacrifice, dogs and cats living together… mass hysteria!

Another quote of note:

Fournier, a self-described information junkie, relates all these details with a blasé precision. Her willingness to put so much information about herself online may seem immodest, even imprudent. But not to her. “I don’t worry too much about that,” she says. “Pretty much everybody I know over 45 has some kind of medical condition. Some people have had cataracts surgery, or they have high blood pressure, or high cholesterol or diabetes. Everyone has something. And if everyone has something, that really levels the playing field.” [emphasis added]

Ah, HIPAA, we hardly knew ye…

And so what about when these folks’ data are sold to big pharma? That’s the $64 billion question, not only for the drugmakers but presumably for potential patient pipelines like the personal genomics companies. But Goetz implies that drug companies are reluctant to eat from the Tree of Knowledge:

“…so far, it seems, the drug industry has balked at the prospect of knowing so precisely what happens to their products after they reach the market.”

Really? I thought this was all about amassing data, no? Could that reticence have something to do with why the pharmaceutical industry is mired in a decade-long slump?