Open Sourcing A Disease Diagnosis
from the with-enough-eyes,-all-biological-bugs-are-shallow dept
If you follow Larry Lessig on Twitter, you noticed that all day Monday he was putting messages on Twitter about how “JZ” was sick and was trying to “open source” his diagnosis. This pointed to a blog that only referred to “JZ” as “Z” and had some basic info on the symptoms of “the patient.” There were a series of blog posts, detailing some of the details of the sickness, tests that had been done, and some of the general questions that the doctors were trying to zone in on. It even included a list of possible diagnoses, crossing out the ones that had been ruled out. Relatively quickly, two separate readers came up with an obscure medical journal article from South Korea from 1994 “about heptatic mega-hemagionas and FUOs,” which apparently quite accurately described the situation.
It didn’t take long for people to realize that the JZ was Harvard professor Jonathan Zittrain, and once revealed, he put up a blog post of his own clarifying the situation, noting that they no longer needed help with the diagnosis, and everything sounds fine (what they diagnosed sounds treatable). He especially wanted to downplay the situation, and not create too much concern for his well-being or the need for any immediate help. The original blog where the details were being shared was taken down, and it now just points to Zittrain’s own explanation.
It’s great to hear that this worked out, and so rather than worrying about Jonathan, I thought it was interesting to think about this aspect of “open sourcing” a diagnosis. Obviously, when it comes to medical info, there are always serious privacy concerns, but this definitely does seem like a case where when there’s confusion, more eyes and more brains can help. I’m reminded of the silly complaint often lodged against Wikipedia, that people wouldn’t want brain surgery done by “a crowd,” but by an expert. But, as has been noted over and over again, that presumes the crowd includes no experts, and that the real experts won’t quickly establish themselves as such. On top of that, it ignores that once you have many different people — some experts, some not — you may get obscure or different perspectives that help lead to the important nugget of info you were seeking out, such as a medical journal article from Korea in 1994.
All this has me wondering if there’s an opportunity out there for the medical profession to make more use of something like this, with patient consent, obviously. I know doctors converse informally all the time, but opening up some aspects of the diagnosis could be interesting. Of course, I also don’t know how often situations like this occur, where the diagnosis is obscure enought that additional help might be useful, but it seems like an area that has possibilities.