Given the fact that patients have been shamelessly and copiously sharing information on the web since, well, it first sprung up, it is nice to see that the medical establishment has gotten on board with the idea of collaboration. Medpedia is firmly an expert project (though it looks like anyone can provide suggestions) and I am not bothered by this limitation. What I do hope to see is a recognition of the controversies that abound in the realm of medicine (Lyme disease, fibromylagia, and a real hot rod issue = autism). There is much about diagnosis and therapy in medicine that exists in the “I am not sure (how to diagnose/treat” category and I wonder if this will be reflected in this new project. I certainly hope so.
February 17, 2009
Medpedia
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Wow, those issues you mention in the context of the “crowd” would be extremely contentious. I’m very sympathetic to a claim that “Western” medical science has had some serious failings — particularly on issues of chronic pain with which I have some experience. Even so, there is all kinds of quackery out there on those topics. I haven’t had a chance to read the recent inoculation/mercury/autism case, but it does sound like an important “win” for science/rationalism, much like Dover.
Comment by Joseph Reagle — February 18, 2009 @ 8:18 am
Hi Joe,
So in terms of the autism debate, it is clear that there is no one to one relationship between mercury and autism. That does not mean there are not environmental factors at play. What concerns me about the recent court ruling is that it might close the door for further investigation, especially in the realm of environmental areas, that could also be behind the rise of not only autism but all sorts of brain disorders.
IMHO, there is no win to declare. We now know that there is no simple connection between mercury and autism but we don’t know anything else, except that there is a lot more to know and in fact we may have to first admit that we don’t have the ability to model the processes (babies born with 200 chemicals?! we have no way of measuring the effects of this) that may be at play and I would much rather admit this than to say, “science/rationality” has figured it out.
There are bona fide scientists, btw, who also believe that there toxins might(and might is the key word here) have played and currently play a role in the tremendous rise of brain disorders. (See, http://news.bbc.co.uk/2/hi/health/6126082.stm where they refer to a study published in the Lancet, a pretty prestigious and rational publication).
Second: About the crowd: what crowd? In the case of Medpedia, the decisions are made by scientists and doctors. But controversy is not just among those crazy quacks/creationists and those rational scientists, but there is plenty of controversies among the so-called rational them, even if they tends to be a certain degree of consensus as well. All I am asking is whether this type of publication will reflect differences of opinion that exist among scientists/doctors, especially for the conditions that we know very little about??
Comment by Biella — February 18, 2009 @ 9:35 am
Re: autism, I agree their could be other factors. I saw an autism advocate speaking who was happy with the decision because she said the community would hopefully begin looking at other factors beyond vaccines. Also, because of the vaccine scare parents had begun stopping vaccinations, endangering their children and others.
Also, non-credentialed community activists can become quite expert and have very important things to say. In “Rethinking Expertise” Evans and Collins (2007) are quite impressed/appreciative of what AIDS activists managed to do during the 80s. (Feb 6′s FreshAir replayed an interview with Martin Delaney that was interesting on this topic as well.)
On Medpedia, I agree wholly. Hopefully if there are differences of informed opinion, they will be reflected — just as at Wikipedia: “Document the controversy; don’t partake of it.”
Comment by Joseph Reagle — February 18, 2009 @ 4:10 pm