The Wikipedia Approach to Disease Classification

The International Classification of Diseases is one of those things that everybody needs, but nobody knows exists. In a nutshell, it is the official list of diseases, as determined by a collective body of experts, under the authority of the World Health Organization. It dates back to the 1850s, when it was known as the International List of Causes of Death, while today it is a highly codified (and oftentimes politicized) list of all sorts of ailments, from broken bones to a dozen or more forms of colitis (here's a PDF link to the latest updates, from 2005). Now on the 10th edition - ICD-10 - each new edition is bigger and better and (again) bigger than the last.

Each disease has its own specific code, and that code is gold – it's used by physicians to specify a diagnosis, by insurance companies to log payment, and by lobbyists to maneuver for new disease classifications (I wrote about one such effort in Wired last fall regarding metabolic syndrome - code 277.7 - and the stakes involved in recognizing that dignosis as an official disease). If a new condition is given a ICD code, it is well on its way towards official recognition as a disease, with all the trappings of insurance payments, industry conferences, and pharmaceuticals that that entails these days.

So I found it especially intriguing to read that the WHO is considering opening its selection process for ICD-11 into a public wiki. That means everyday folks can suggest new diseases and new classifications (this happened a couple weeks ago, but for some reason only the Canadian press covered it, at least as far as I could tell). Unlike Wikipedia, they will have top editors vett the new suggestions, so I think it may be partly motivated by PR considerations, or as an experiment that - I hope - is easily undone if things go awry (ie, if spoofers decide to elevate hangnails into a form of cancer, or some sort of mischief).

But it's an interesting reflection on the notion of disease, really. The implicit message here is that there are all sorts of conditions that deserve official recognition that the medical establishment is somehow missing or is ignorant of, and that by canvassing the people they'll turn up some ailments that deserve full ICD inclusion. Is that possibly true - are there really diseases (or pre-diseases) that the medical world isn't already tracking? And is this just a recipe for more "disease mongering", ie medicalizing the everyday annoyances of life? We'll see. But it should make for a more exciting than usual classification meeting this fall.

Thomas GoetzComment