Twinfrastructure.

About a week ago, Jonathan Zittrain got sick. What followed was a nice little demonstration on the power of the Internet and crowdsourcing:

I was apparently a very interesting case — offering symptoms that were both general enough (just the fevers) and worrisome enough (a couple numbers very off on some blood tests) that no one could figure out what was going on (put in medicalese that I’m rapidly learning enough of to be dangerous, there was a large “differential diagnosis”) — and yet there was some sense of urgency, especially if what I had was an infection that could go systemic.
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A friend started a blog to keep friends and family updated, under a light password, and then a colleague had the inspired idea of asking a medical blog to put out a gentle call to its audience — primarily doctors — to help in the diagnosis given what a tough nut it was to crack.  I mean — I do believe that many eyes make all bugs shallow, and the truly fantastic team of doctors here was OK with a blog being kept.  (The case has involved, from what I can tell, multiple specialties from across the hospital and beyond, and every single doctor I’ve encountered, including the hospitalist who manages the case, has been fearsomely smart and intensely engaged.)
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Sunday morning [Lawrence] Lessig tweeted that JZ was ill and why was a mystery — all true.  The blog produced some amazingly helpful comments from people and doctors at large, including references to two discrete academic journal articles — one from a Korean medical journal from 1994!  Thanks to the Net I had a copy on my PC and then e-faxed to the nurse’s station on my floor in a matter of minutes.  In the meantime, over the course of today (Monday the 15th), additional results have come back to help narrow the diagnosis in a properly documentable and formal way — one that’s converging, it seems, to the obscure Korean article.  To be clear, the terrific doctors here have been methodically arriving at this diagnosis already.

On balance, this is awesome. It is, as Lessig put it, essentially equivalent to having House in every hospital in the world. However, the sprawling nature of the project naturally produced some security holes:

[T]he good folks at BoingBoing echoed Lessig’s call for assistance — drawn from an intermediate source that had already put 2 and 2 together and turned Lessig’s “JZ” into … me, no doubt without even thinking there was any difference.  So then it became: “Jonathan Zittrain is really sick and needs help finding out why!”
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Trying to put a cat back in the bag is not easy, and I’m no fan of the memory hole.

That’s why I’m posting this now — BoingBoing has kindly taken down the post (since the call for help was no longer timely, and because I hadn’t previously been identified)

I remember Zittrain’s The Future of the Internet (And How to Stop It)¹ and I follow Lessig, Zittrain, and BoingBoing, so I made that similar mental jump when I read Lessig’s tweet. It’s another reminder that very, very few things stay secret forever online, although this story looks to have a happy ending.

Also, when I read about this I wondered if there were any nascent online-diagnostician practices. In the abstract, it seems like a pretty good plan to me.

Tagged: nerdiness, technology, twits, web

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