There
are many good reasons to deplore Wikipedia, not the least of which is
its authors’ cultish smuggery
about the righteousness of their cause
and the rightness of their content.
Of course there is also its internecine complexity of processes. The documentation tracing the petty bitchery about an entry is often longer than the entry that is produced. The international collectivist negotiation over matters of “fact” is beginning to remind me of the United Nations, but without the fancy New York headquarters.
A recent post by e-health blogger John Grohol left me steaming anew about the nature of the entire enterprise.
The piece details a series of exchanges between a Wikipedia editor and Gilles Frydman, head of the non-profit cancer support community ACOR. The issue was the collective’s refusal to permit links to health-related support groups.
The post includes only one side of the story, and that filtered through the articulate vitriol of Grohol. So I can’t vouch for the details of the exchange. But it is accurate that Wikipedia does not permit links to support groups. [See relevant policy excerpt at end of entry.] On reflection, this astonishes me:
1. Wikipedia is designed to harness the collective intelligence of many individuals, an example of the the classic web 2.0 “wisdom of the crowds.”
2. Online support forums are designed to harness the collective intelligence of many individuals, the classic web 2.0 “wisdom of the crowds.”
Wikipedia leverages the wisdom of the crowds one way. Online support forums do so another way. But Wikipedia won’t assign value to the other–in fact as a matter of policy it pointedly excludes it. Which is to say: The power of the many is a powerful force to disseminate knowledge–except when it’s not.
The hypocrisy is remarkable. To cite just one sad example: The Wikipedia entry on amyotrophic lateral sclerosis (Lou Gehrig/Stephen Hawking disease) is workmanlike. It includes references to mainstream groups like the ALS Foundation. It even includes, god help us, a link to that font of scientific dispassion, the Ride for Life.
But it is utterly silent on the powerful ALS community of PatientsLikeMe, an unusually ambitious patient (and provider) experience- and data-sharing site. To say it serves folks who need to know about ALS far better than Wikipedia–and that it offers a greater amount of authoritative current knowledge–is to understate.
Yet Wikipedia excludes it because it is an online support group, not because it is unworthy. Wikipedia has decided–for expedience? for ideological reasons? for self-interest?–to exclude information not on the merits of an individual source but due to its information class.
It’s a sort of info-bigotry, an attempt to exclude a minority deemed less worthy based entirely on class, not merits. And Wikipedia is itself part of a larger class, web 2.0, which itself suffers similar discrimination!
If we are to exclude one style of responsibly gathering collective wisdom, should we exclude them all? Or–here’s an idea–maybe we should judge individual sources on their merits.
The trouble is, so many people around the world link to Wikipedia, it rides at the top of nearly every topic search results page. This only increases its use and ubiquity, if not hegemony. Its decisions to include and exclude data are magnified across the information universe.
I’m wondering if it’s time for concerned web citizens to stop linking to Wikipedia. If this were to catch on, it would have the effect of diminishing its ubiquity, allowing it to recede to its proper role: a useful but limited, and often deeply flawed, source of information. Just like an online support group only bigger and with a chip on its shoulder.
I know, of course, that this is trying to sweep back the sea with a broom. To draw on that U.N. metaphor, maybe it’s time for a different kind of collective action: Wikipedia out of the web. The web out of Wikipedia. -- Craig Stoltz
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[Wikipedia linking policy on support groups. Note the sniff of condescension implicit in the second paragraph. And note how sections in its medical articles on Awareness and Fundraising Events clearly violates this policy!:]
Wikipedia’s external links policy and the specific guidelines for medicine-related articles do not permit the inclusion of external links to non-encyclopedic material, particularly including: patient support groups, personal experience/survivor stories, internet chat boards, e-mail discussion groups, recruiters for clinical trials, healthcare providers, fundraisers, or similar pages.
Wikipedia is an encyclopedia, not an advertising opportunity or a support group for patients or their families. Please do not re-insert links that do not conform to the standard rules.
User-generated content 


Thanks for this informative post - have you come across You Tube - The Truth According to Wikipedia,
(general, but contains strongly contrasting views)
48 minute documentary?
Posted by: virtual nexus | April 27, 2008 at 04:27 PM
Great points here, Matthew!
In the past, I have encountered some of the same issues described by John Grohol in his blog post trying to offer relevant and useful links to online diabetes support forums such as tudiabetes.com. Though initially I spent myself trying to argue my way back, I later got to the conclusion that it is their right to run their platform as they see fit.
As much as I regret the fact that the world's biggest encyclopedia is truly loosing on the potential to offer factual valuable information: I think it's very hard to argue these days over the value that support forums bring to the lives of patients ailing from any cronic condition.
So, until Wikipedia chooses to update their philosophy about these things (and in case they don't), I have decided to work with folks who actually have a process in place to make sure that all links (as long as they are pertinent and valuable) can make it to an article (or a guide, as some call it).
The best example that comes to mind is Organized Wisdom. I contributed to their Insulin Pump guide and found their process fascinating as it is not unlike working with an editor as you put together an article for a publication.
So, while I hope that Wikipedia changes its ways in regards to allowing links to online support forums, until they do, fortunately we have options.
Posted by: Manny Hernandez | April 30, 2008 at 08:06 AM