Wikipedia’s Arcane Rules Censor Health Information

I don’t know of a living soul who views Wikipedia as any type of authoritative resource. Why? Because no single person takes responsibility for any article’s content or quality. Some articles are heavily and well-edited, while others are much less so. At any given moment, you can’t say whether an article you’re reading is the highest-quality version on that topic or not. You can hope it is, but you have no easy way of knowing or telling.

What happens when you edit something going against one of 43 Wikipedia’s esoteric editing rules? (Wikipedia refers to these rules as “policies,” including the gem that every one of the policies can be ignored it if “hinders improving Wikipedia.” I can only assume that’s a relatively subjective standard.) It usually gets reverted fairly quickly. Oh, and you’d better read up on the over 65 style “guidelines” too, because if you violate one of those, you’ll find your edits lost more quickly than you can say “Engorged bureaucracy.”

Wikipedia has gone from “An encyclopedia ANYONE can edit!” to “An encyclopedia that you may be able to edit, if you follow all of our rules and don’t argue with us. Even if you’re an authoritative expert in the field.”

Recently, Gilles Frydman, head of the non-profit cancer support community ACOR asked the Wikipedia editing community that links to e-patient medical communities should be allowed as an exception to the guideline that links to forums should not be allowed. (By the way, this same rule discourages links to any site that requires even a free registration to view the content, ruling out links to most major newspaper articles that could give additional valuable information on the topic.)

To figure out the history of these odd prohibitions against certain types of links to information online, you’d have to dig into 20 archives on this particular policy alone. That’s a nice way to spend your afternoon. Be prepared to do a similar search on any policy you have questions about, because that’s what you’ll constantly be referred to, often without further explanation or comment.

In Gilles’ case, the other editors kept referring to the supposed fact that these are un-authoritative “support groups,” not authoritative information resources. Of course, as has become increasingly clear, even authoritative information sources are rarely as authoritative as we believe they are.

One favorite argument form is to keep reframing your opponent’s position with words and phrases that completely re-define their position in terms that you can more easily argue against. Gilles kept repeating the fact that these online medical communities are valuable information resources, not just support groups. Instead of acknowledging that reality, the other editors kept saying, “No, they do not offer any valuable information to our readership.”

At the end of the ensuing debate, Gilles suggested the following be noted in such online medical communities:

If you or a loved one suffer from a rare condition you should not consider any wikipedia article to be an inclusive source of information regarding that condition. Due to the strict editing guidelines of wikipedia, some of the most useful sources of hard to find information regarding your condition, including all patient communities, cannot be mentioned in any article. In conclusion, wikipedia articles should be neither the first nor the principal source of information to give to a newly diagnosed patient, since wikipedia doesn’t accept, in principle, mention of any patient-generated information because that information is not considered “authoritative”.

Now there’s a guideline I can understand and agree with!


Posted in: patient networks





9 Responses to “Wikipedia’s Arcane Rules Censor Health Information”

  1. As usual John beat me about the incredible story of the Vioxx ghostwritten “peer-reviewed” articles. This story should be a real wake-up call for anyone still believing that peer-review publication in an authoritative journal is an automatic proof of quality and even more importantly of honesty.

    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.

  2. todd says:

    I’m of two minds about this. On the one hand, I hear what you’re saying and it has tremendous merit. OTOH, without this guideline (and unless I’m misunderstanding you), it would be up to Wikipedia to determine the merits of the linked sites.

    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?

  3. John Grohol says:

    Links are already allowed in Wikipedia and have been from the start. The issue isn’t links, per se, but *what* precise links are allowed.

    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.

  4. Very good insights, John – informative for me, a casual Wikipedia user who appreciates the platform but isn’t clued in about the holes in its system. This one could end up being a gaping chink in WP’s armor. I hope they’ll wise up.

    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.

  5. John Grohol says:

    It gets worse, as this National Post article notes:

    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.

  6. Katie Kinder says:

    I recently accurately diagnosed myself with appendicitis based on the symptoms as listed in Wikipedia’s article on the condition. While the article certainly wasn’t my only source of information in assessing my situation, it was very much the active factor that pushed me to call my doctor. Once on the phone with a trusted professional, he agreed that my symptoms could add up to appendicitis. It was only after my doctor’s recommendation that I made the trip to the emergency room, and I’m glad that I did.

    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.

  7. First, I want to acknowledge my niece Katie’s story. I knew she’s thoughtful but I’d never seen her write, and this is a pleasant surprise – and a great example of how an empowered 23 year old can be an effective participating patient.

    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!

  8. Katie Kinder says:

    Glad to share! I’ll definitely spread the word about this issue, and this blog in particular. And for the record, I’m 20, not 23 :)

  9. Publish2 says:

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