Referring back to the policy argument John cited, what folly this becomes: “Wikipedia articles are not written for patients.” Where on earth could someone draw that line?

Second, re “if you’re a zealot in power in Wikipedia”: that’s a good way of expressing it. I love the idea of Wikipedia, but without a way of overthrowing zealots, it’s doomed.

And in case there’s any doubt, I don’t give a hoot about rightness or wrongness of method – you might say I’m not a method zealot. I just want access to important information! It’s one thing for other WP editors to disagree with a position, and be empowered to say so; but as John’s National Post link says, it’s entirely another to find yourself completely unable to say something because others instantly and repeatedly delete it. That’s the opposite of empowerment, it’s mass bullying and suppression.

But, back to Katie: you go, girl! Great work! Keep spreading the word about participatory medicine. Too many people still feel it’s not their place, and not enough care providers see the light yet. Thanks!

It’s possible that the article on this condition was only edited by people who were considerably reliable sources themselves, or maybe it simply hadn’t been altered at all from it’s original posting on the site. Regardless, the availability of information is what prompted me to act (and call my doctor in the first place), and made it possible for me to actively participate in my own healthcare.

I agree entirely with Frydman’s idea for requiring that a disclaimer be noted on any page with detailed information about any potentially serious medical condition. I do not agree with any motion to bar any site from posting potentially useful information. We should all be able to actively participate in our own healthcare, and sometimes all that means is having the information readily available for the patient’s use. At the same time, it is vital that the reader is constantly considering the source of information.

http://www.nationalpost.com/todays_paper/story.html?id=440268&p=1

Basically, if you’re a zealot in power in Wikipedia, apparently your POV will rule over all others. While I don’t agree with the author’s position on climate change, I am flabbergasted by what passes as appropriate behavior on Wikipedia. It seems to be a growing encyclopedia of mis-knowledge!

So much for an unbiased encyclopedia. Which is exactly the problem with trying to manage a virtually infinite-sized database of infinite edits by infinitely anonymous editors and contributors.

Gilles hit the nail on the head when he talked about the view of people whose health is at stake.

I made substantial use of online information during my cancer last year, and I’m disturbed by this manual page, especially where it says “an online forum or a LISTSERV group is not useful or informative to the average reader.” That’s either a boatload of uninformed crap, or a death sentence for Wikipedia ever being useful to someone trying to find out what information is reliable, or both.

*All* the misleading information I got about my cancer last year came from big-name peer-reviewed medical sites, including names that are well respected. All the *useful* information I got came from ACOR – a community of people with a direct immediate stake in accurate information, which quickly whacks any idiot commenter (just as Gilles says).

But the corker in that Wikipedia manual page is the next sentence: “Wikipedia articles are not written for patients.” If that’s firm policy, it’s the end of my interest in WP for e-patient purposes.

Somebody needs to consider the average reader who seriously needs reliable information. If all WP wants to be is content for uninvolved encyclopedia readers with nothing at stake, so be it, but I say shame on them for missing an opportunity to make a difference in people’s lives.

To the extent that Wikipedia editors behave as rude head-bangers (“Go read policy x, and no I’m not telling you what it is”) or equally rude belly-bumpers (ibid), they’re getting in the way of my getting the information I need, which makes them irrelevant and useless.

Much better to adopt the suggested disclaimer.

Now for an ironic final stroke: this weekend I’m out of town visiting relatives, and this evening I discovered that one of them recently did something important for herself medically, using information she got on Wikipedia. I hope she’ll be posting here.

For instance, Wikipedia has no problem linking to the biased, outdated cesspool that is the Open Directory Project (DMOZ), because, supposedly, it is authoritative. But having had worked on that project myself for 5+ years, I can tell you it is seriously flawed and has significant editor quality issues and biases.

Here, though, Gilles was simply pointing out that not all online forums and communities should be painted with the same brush. But other Wikipedia editors refused to acknowledge that not all forums or online communities are created equally.

First the editors asked for peer-reviewed references to the usefulness of medical online communities. They were given them. Then they decided that that still wasn’t sufficient enough to prove the “worth” of these links to the general public and decided to keep the status quo anyway.

An attempt was made at reasoned discussion, but it seems it takes more than reasoned discussion to bring about any type of policy change in Wikipedia. Ah well, their loss. And in the end, it’ll be the loss of anyone who turns to Wikipedia thinking they cover a medical topic with links to other valuable online resources, just because those resources happen to be patient communities.

Without that policy, how long would it be before there were endless links to Kevin Trudeau, or that colon blow zombie guy, or some other crackpot.

No, I really don’t see any way around it without some sort of vetting process for the links, and who would be trusted to do (and pay for) that?

Members of the ACOR communities have long ago understood this simple fact: “Doubt Everything, when it is in regards to your health.”

The incredibly old-fashioned, old-model, or as our friend Tom Ferguson, M.D. would say “Industrial Age model of medicine mentality demonstrated by ALL the medical editors at wikipedia is just as scary.

What a world we are living in! You can no longer trust the “authoritative” sources of medical information and you cannot rely on the openness of the information generated by a supposedly social encyclopedia, presented as the ultimate symbol of the wisdom of crowds (I really believe that Jimmy Wales ought to give his opinion about what is going at wikipedia medical articles). No wonder e-patients have learned to trust their peers, because so far their exchanges have retained the right balance between a high level of freedom and a good amount of constant monitoring and peer-challenge when some information sounds off-track.