I'm back from New York. We had a great trip, and now we get to return to our home, where apparently Everyone Who's Anyone is my neighbor! Roy will be moving next door shortly (I hope).
So I'm finally getting to today's New York Times magazine and I read an article by Thomas Goetz called "Practicing Patients." It's about an on-line medical community called PatientsLikeMe where people compare their treatments for a variety of neurologic and psychiatric disorders. People enter their treatments and chart their progress and therefore form a data bank of information. It was founded by the brother of a man who was ill for years with ALS.
Okay, so it's not 'controlled trials' and there's the risk that people will demand unproven treatments based on what they've read as anecdotes on-line (Goetz mentions ALS patients asking for Lithium based on information reported on the site), but what a great idea to get data on treatments, what works, what causes side effects, in a more real-life way. Research trials often eliminate Real people-- any one with a co-occuring illness, people with substance abuse problems, women who might get pregnant, children.
I surfed briefly. I didn't join. What a great idea.