TORONTO - If the Wiki process works for compiling an encyclopedia, couldn't the same approach work for classifying all the diseases and injuries that afflict humankind?
The World Health Organization thinks it can. It is embarking on one of its periodic updates of a system of medical coding called the International Classification of Diseases - the ICD for short - and it wants the world's help doing it.
While work on previous versions has been the domain of handpicked experts, this time the Geneva-based global health agency is throwing open its portal to anyone who wants to weigh in on the revision.
"When I think of the ICD . . . it's been largely controlled by a very small group of people," says Dean Giustini, biomedical branch librarian for the University of British Columbia.
"The updates have not always been responsive to changes within the practice of medicine. So I think: What better way to make it responsive than to put some of the technology to good use and make people at the grassroots able to go in and make changes?"
Giustini is an associate editor of Canada's newly launched online open-access medical journal Open Medicine. He's also a proponent of the democratization of the Internet, the Web 2.0 movement that the Wikipedia embodies.
So he's supportive of the WHO decision to open up the ICD revision process to all comers willing to register, back their suggestions with evidence from the medical literature and participate in online debate over proposed changes.
"The adoption of Wiki technology by WHO is kind of interesting. It indicates they get it," Giustini says from Vancouver.
If you are not a health-care professional, hospital administrator, health insurance executive or medical researcher, you've probably never heard of the ICD, even though the classification system has been around in one form or another since the 19th century. The current version is the ICD-10; this process will produce ICD-11.
Every disease, ailment and health-related mishap has a code. And those codes are highly specific.
Frostbite has 27 possible codes, depending on what part of the body is affected and how badly. Being stung by a jellyfish shares a code - X26 - with having "venomous contact" with a sea anemone, sea cucumber and sea urchin. But it you have the misfortune to be bitten by a sea snake, that's an X20.
A natural birth is an 080, but if the baby's in the breech position, that's an 080.1. Throw in forceps and you've got yourself a range of options, depending on whether it's a low forceps (080.0), mid-cavity forceps with (080.2) or without (080.1) rotation or forceps plus a vacuum extractor (080.5).
While it all may seem like so much medical minutiae, the fact that these codes are universally used allows everyone, everywhere who is involved in the delivery, funding, planning or research of health care to count the same things more or less the same way.
And there's a lot of counting in health care.
"They're huge knowledge-generating behemoths, hospitals and health-care systems. So we need a really tight and concise way of tracking all of that data," Giustini says.
Hospitals count to know how to bill health-care payers - governments, private insurance companies or individuals - or to allocate staff resources. Governments count so they know whether it makes economic sense to offer free flu shots or to get a handle on how big a burden cancer care is. Researchers count to try to determine if a new procedure saves more lives than the existing one, or to measure whether people with a medical condition are getting the prescribed type of care.
"The International Classification of Diseases puts diseases in categories, in small drawers, to be able to group them and count them and then to use this information to, for example, make decisions in public health like vaccination programs," explains Dr. Robert Jakob, the WHO medical officer responsible for the ICD.
Changes in medical care and in the scientific understanding of different diseases demand that the ICD be tweaked from time to time. So does the emergence of new diseases; after the spring of 2003, a code for SARS - U04 - had to be added.
But occasionally there is a need for a major overhaul, like this one. It's typically a process that takes between four and eight years, with many consultations and multiple drafts. And it has always been an insider job.
"In the past, experts have been selected or nominated by different NGOs that represent the different (medical) speciality at world level," Jakob says.
"But of course . . . the problem is if you send mail and you have to meet (gather) people in one place, of course the number of people who can participate always is limited to some extent. And that's really the new thing now, that with this online approach, nearly everybody has a chance to provide input."
So sea anemone experts could argue that the world has under-appreciated the toll of sea anemone stings because they share a code with all those other stinging sea creatures. Or if science discovers that something we now think of as a disease - let's call it Hypotheticalitis - is actually a symptom of a disease caused by a genetic defect, coding changes would be needed to reflect that.
The new, more open approach to updating the disease classifications won't be entirely Wiki-esque. That process, with its anyone-can-edit approach, builds a degree of vulnerability into the end product, with some contributors deliberately planting false information for the fun of it.
With the ICD, people can propose changes and argue for them on a WHO-sponsored blog. But groups of subject matter experts will weigh and synthesize the suggestions, Jakob says.
And Giustini suspects the ICD rewrite won't be a major draw for Internet pranksters.
"I guess there will always be people who will focus on the vandalism aspect, but you know the percentage of people who would be interested in even wasting a minute doing that is so small," he says.
The WHO is running its platform in English, but a network of its collaborating centres, located around the world, will host the application in Arabic, Chinese, French, Russian and Spanish - official UN languages. Other partners may host the platform in Japanese and other tongues to facilitate greater participation.
The steering group is aiming to have an initial or alpha draft ready by the end of 2008. It will be put out for comment, a process that will lead to a beta draft that will be field-tested. Jakob says the final version should be ready by 2010 or 2011.
