Some of the most boring sounding parts of epidemiology are also the most important. Take the International Classification of Diseases (ICD), now in its tenth revision (ICD-10). This is a standard way to code disease diagnoses that has its origins as far back as the 1850s. It was taken over as an official function of the World Health Organization (WHO) on its founding in 1948. By then it was already in its sixth revision. Versions of ICD9 and ICD10 are used for epidemiology, national health planning and health care management, where your insurance reimbursements are governed by ICD codes. It's used on death certificates and cancer registries and hospital discharges and insurance reimbursements. Any revision of the ICD is a major event and requires years of planning and special provisions to provide "cross-walks" from older versions to newer ones so comparisons across time can be made.
I'm posting on this now because of a rather stunning development in the ICD process. Voice of America is reporting that WHO will be opening up modifications of ICD-10 to . . . you. Yes, ICD-10 Plus is going to evolve wiki-style:
Medical professionals from around the world are working together under the World Health Organization to update the International Classification of Diseases. On an Internet platform launched on Monday, anyone can propose, with evidence, new disease classifications in the first global effort since 1989. As Yuriko Nagano reports, the list aims to become the medical version of Wikipedia, the online encyclopedia.The World Health Organization hopes to make the global standard for medical and health statistics available not just to medical professionals but to the general public for the first time. The International Classification of Diseases, or ICD as it's called, is a list that includes every medical condition from head injuries and cancer to disabilities. (Yuriko Nagano, VOA News)
Use of the ICD is governed by international treaty, which requires it for causes of death. The US uses ICD-10 for causes of death but has retained ICD-9 CM for morbidity (episodes of sickness). The CM suffix stands for Clinical Modification and it is this coding that is used for hospital discharge data in the US. The move from the ninth to the tenth revisions was especially difficult because the structure of the coding was changed, causing some discontinuities in the cross-walk between 9 and 10.
It is hard to overestimate the importance of the ICD or almost everything we do in epidemiology and health services. Hundreds of new diseases are described every year, many of them rare but in the aggregate major causes of death. Some diseases "disappear," mainly because we have learned they are something else or variants of something else. New ones are discovered. Like AIDS. But if you ignore new diseases in the coding, they might as well not exist for many important purposes.
The new process will be extremely interesting to watch. If you want to consider some of the possibilities, consider this:
WHO says this will allow contributors to have a say, for example, in how homosexuality is defined. It has been defined as a "disease" since 1989 due to external pressure but now ordinary consumers can debate and exchange their viewpoint with doctors and clinicians and possibly open up new classifications.
Yes, extremely interesting.
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ICD-Wiki? I see de ten+ New Wiki?
Hm...
This is a related question about ICD-9 (and 10) codes. With regards to nosocomial infections, there is massive underreporting (around 90%). Even for things that are hard to obfuscate, fudge, or honestly misidentify (e.g., sepsis), the ICD codes are still woefully incomplete. Any thoughts why that might be?
Mike: Incomplete, how? Underreported or lack specificity? (e.g., how contracted? where? organism?) Are you looking at hospital discharge data? mortality? one state vs. all states? first diagnostic field? all fields? underlying cause? multiple causes? Are they maybe listed under another code? Or do you think there is an inherent problem in the code?
I'm not a nosologist, but I have to use these codes, too, so I know about them from that point of view. If the information is not in the medical record or is writing it without enough specificity then there will be problems. A coder can only code what is in the record.
All lefty/righty stuff aside. Revere IYO does this bode well. E.g. they could classify AIDS as a disease that only affects gays and bi-sexuals and lock them up as public health hazards. That would be a right side turn of course, but on the left hand side it could say that hunger is a disease and it only affects people in "X" country. Middle ground of this is that someone had to have been smoking something when they thought this one up. Every camshaft in the crankcase is going to come up with something. Wont it bog things down?
Don't underestimate the Right. They won't be so subtle as to classify AIDS as a disease of gays if they can get away with classifying homosexuality itself as a disease.
EX-D. Wont get an argument out of me on that one....It would be the fringe and the far right but this is my point entirely. Centrist right wouldnt think of it.
Randy: You are correct that there is a great deal of social content in disease naming and classification. Doctors and scientists do it just as much as anyone else. The reason there are ten major revisions (with lots of modifications in between) is that disease classifications are always shifting and changing as the world changes and our knowledge of disease changes. It remains to be seen how opening up the process will work, but I think it's a good idea. The amount of raw brain power "out there" is so immense and the abilities of a small group on a revision committee so limited in comparison it has the potential to be a big improvement. Unless you've seen these codes, you can't appreciate how difficult it is to do this and how complex the coding is. I don't see a great deal of public participation but what there is may well improve some difficult areas.
Or maybe not.
Underreported or lack specificity? (e.g., how contracted? where? organism?) Are you looking at hospital discharge data? mortality? one state vs. all states? first diagnostic field? all fields? underlying cause? multiple causes? Are they maybe listed under another code? Or do you think there is an inherent problem in the code?
I think some of the issues are the complexity of the codes used. Also, when there are multiple potential causes, the 'inconvenient' ones are not added to the record. Another reason is, as you pointed out, massive underreporting (it never enters the records).
Wait, the World Health Organization still classifies homosexuality as a disease?
As a comedian once asked, does that mean you can call into work gay?
"I can't come in today. ... Yeah, still gay."
*sigh* What makes anybody think the "external pressures" will be any less now than they were in 1989? Sure, gay rights have come a long way, but so have the forces of homophobia. If they caved to bigotry then, why won't they now? If they couldn't find the evidence against that classification then, why do we think they'll see it this time?
And in what contexts have they been using the code for the "disease" of homosexuality? Are they still using it for AIDS (which for awhile now has been infecting straight people at a greater rate than gays even in the U.S., let alone Africa)? Is it tagged onto hate crimes along with the codes for assault and murder, or onto suicides when committed in an atmosphere of social ostracism and family rejection? Honestly, when would such a code even plausibly be necessary?
I'm not a medical profession, but I am a casino dealer. What does that have to do with this topic? In my mind, every system is a sort of a game. When you start changing the system, it changes the game to someone's benefit.
I'm sure there are some conditions that insurance companies would like to see un-identified so that they can get away with refusing those claims. There are lots of industries that would be delighted to see repetitive-stress conditions redefined to their advantage. We have veterans who have sustained closed-head injuries of many sorts. How we define and delineate between those injuries impacts the amount of money that we will all have to pay for their care.
Drug companies have cures waiting for diseases. We could see restless leg syndrome and toenail fungus joined by a whole bunch more urgent and embarassing conditions that we are "informed" about through the miracle of phamaceutical advertising.
I'm sure there are more "players" in this game that I haven't thought of yet.
Well said Susan, very well said.
My first candidate would be the most obvious one; unfortunately, it is also the one least likely to ever become an internationally recognized, classificatory subject: Religion. Religion is the single most destructive "organism" on this planet. Nothing else can possibly match it for sheer capacity to inflict unending suffering, and unmitigated savagery on every single person who has ever been exposed to it. Nothing else even comes close. Once religion "has" you, it can do whatever it wishes with you. Accept it, and prostrate yourself, and it will dissolve or destroy the very things that make you "uniquely" human; reject it, and you chance becoming a very real target of its blind, unthinking fury. It is stunningly pathogenic, noxious, and insidious beyond belief; and it is virtually impervious to all attempts to address its monstrously malignant, utterly unintelligible hold on its host(s). This is an undeniably powerful plague that is many thousands of years old.
Among its very impressive, easily observed achievements are starvation on an almost unimaginable scale (much, much more to come, where that is concerned), endless wars, and the progressive -- and ultimate -- destruction of the entire planet; all brought about by a disease that unleashes a profound, apocalyptic self-hatred in those who are afflicted with it. And a hatred of everything that cannot be directly associated with "their" religion. Behind its pious, self-righteous facade, resides an implacable, and completely unfathomable appetite for destruction. This is an essentially ineradicable disease of the human spirit. It is a cancer, a parasite, a poison, an autoimmune reaction, and an instrument that can inspire a mystifyingly prodigal departure from what I would consider to be the essential element, the vital spark that can be an inherent aspect of our collective humanity, and a force for our collective salvation: Reason. Reason is the real victim of Religion, always, and everywhere; Reason is cast out, when Religion is allowed to come in. These two, Religion and Reason, are engaged in a titanic struggle for planetary supremacy; the former represents the most likely candidate to usher in a violent end to our sojourn, here; the latter is our only "way out." Nonexistent "knowledge" triumphs over all our legitimate efforts to examine, and fully apprehend (to the extent that our various abilities allow that outcome) our "place," here. Religion is necessarily blind and arbitrary; it pretends, in all cases, to possess knowledge that cannot exist. Self-delusion, and lying, reside at the very center of its heart, and soul. It could not be otherwise. Reason recognizes this, and instinctively recoils from it. That could not be otherwise.
Religion is the chief disease, and primary threat, here. But its true nature remains, to all of our "senses," save Reason, essentially invisible, as it portrays itself as a "path" that illuminates the genesis, and explains the ultimate "purpose," of Life itself. Where loathsome conceits are concerned, this one is almost unparalleled. It is unmatched in its ability to wield fear and hatred as enormously effective weapons; whether Reason will be adequate in our defense against the inherently predacious, destructive nature of Religion remains to be seen; the struggle is ongoing, and in this country, at least, Religion appears to have the upper hand. Maybe that will change. But now that Religion is allied with our spectacular weaponry, however, it constitutes a very real threat to our continued existence. If we disappear, by our own hand -- along with Religion -- it will be because we refused to allow Reason to guide us. Reason is not our enemy. Religion, on the other hand, clearly is. Reason regards Religion, appropriately, with suspicion, and well founded apprehension. Religion regards Reason with sheer terror, and appropriately, irrational hatred. The two are essentially irreconcilable. One is the disease, and the other is the only possible cure.
Dylan: In the mental illness category, right?
Revere: Yes.
I've looked on the WHO website and tracked down the report that resulted form the ICD Revision Steering Group that was held in Japan on April 16th to the 18th.
It's here: http://www.who.int/classifications/network/icdrsgmeetingapril2007/en/in…
The full set of documents are in a zip file on this page.
It looks to me that this is simply a mechanism for gathering together suggestions for new codes, etc.
The wiki won't be the new classification, it's just a means to an end.
I can't see how a wiki could be a classification anyway. A classification has to be static to be of any use. A wiki is an open document that is always changing.
Kieran: The wiki is just a mechanism for getting input. But this is a qualitative step because prior to this it was a revision committee with little opportunity for outside input. We'll have to see how this works, if it works at all.