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Wikipedia: Time to Pull the Plug

StoltzThere
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.

[][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][]

[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.

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RogeradamgilcristMikeTom LeithAlison Cummins Recent comment authors
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Roger
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Roger

I think Wikipedia’s policy on avoiding links to on-line forums is wise. While SOME of them may be very helpful, some are just set up to promote specific, often harmful (or at least no better than snake oil) products. Wikipedia clearly cannot take the time to track down those bogus entries which serve only to leach needed resources away from desperate people who may not be thinking clearly in the face of crisis. Given the (sometimes unfounded) faith people have in Wikipedia (it is a very helpful reference for some things) to have a link to a support group implies… Read more »

adamgilcrist
Guest

This article about the time to pull the plug. Its tell about the specialisation of wikipedia. But i want to say through this awareness of Drug addiction and treatment.
——————
adamgilcrist
Suffering from an addiction. This website has a lot of great resources and treatment centers.
http://www.treatmentcenters.org

Mike
Guest
Mike

Wow, Craig, way off base you are. Strong-arming Wikipedia to link to interest groups, purportedly nonprofit or otherwise, is a reach. Patientslikeme.org, to cite one of your examples, is a start-up with an intriguing and creative mix of nonprofit and commercial aspirations. Wikipedia is supposed to parse the motivation, credibility and sustainability of this group and potentially thousands like it? Are you crazy? Each article will soon have its own “long tail,” this time consisting of hundreds and hundreds of enterprises intent on hitching a ride on what we all trust is a reasonably objective informational site. Or is Wikipedia… Read more »

Tom Leith
Guest
Tom Leith

> If you need to save your life, fast, you
> should *not* be going to Wikipedia. A librarian,
> maybe.
Ummmmmmmm.
How `bout a doctor?
t

Alison Cummins
Guest

If you need to save your life, fast, you should *not* be going to Wikipedia. A librarian, maybe. “Support Group” can cover a multitude of things. PatientsLikeMe is one kind of support group, which is possibly in a very grey area. But there are all kinds of other support groups where people support useless or dangerous medical treatments as if they were legitimate. For instance, some autism support groups discuss ways to lie to insurers to get them to pay for medically unindicated treatments that are much more likely to harm than help their children. Given that people’s lives really… Read more »

John Grohol
Guest

Great, so everytime anybody wants to add a support group they believe provides helpful information to other patients, they have to engage in a debate about whether it does or not on the other couple of hundred disease pages in Wikipedia? Wikipedia is great — if you have endless amounts of time and patience to argue these finer points with a dozen other editors who also seem to have endless amounts of time and patience. But because the policy states that such links are to be discouraged, you’re going to be arguing against the status quo each and every time.… Read more »

Jon Lebkowsky
Guest

Gilles, I could be wrong without re-reading, but I’m pretty sure you were dealing with one editor, and some others were kibitzing. Anyone could remove the link and anyone can add a link. The editor did what he thought was right based on guidelines that suggest that you avoid linking discussion forums, and he clearly had some attitude about patient communities – but if you took time to read the actual guidelines you know there was no hard and fast rule prohibiting the link. You chose to argue the point rather than make your case and restore the link, which… Read more »

htb
Guest
htb

e-Patient Dave wrote: It’s fine with me if they declare “We’re a reference encyclopedia – if you’re looking for xyz, go look here.”
Dave, would you be okay if they just declare, “We’re a reference encyclopedia – if you’re looking for xyz, go look someplace else”?

Gregory D. Pawelski
Guest
Gregory D. Pawelski

I go along with bev MD as an outside observer in regards to Wikipedia being an authoritative source for medical information, particulary cancer medicine. I began my quest for answers to vital cancer questions twelve years ago with perusals of over 500 medical websites like MedLine, Pub Med, Oncolink, Johns Hopkins, NCI, NIH, etc. And I’ve kept a continued repore with some of the hundreds of medical professionals I’ve written to all over the United States and across the globe. Like bev said, there are too many other good sources.

htb
Guest
htb

You know, I was right with you… up until I realized that what you quote as “policy” is NOT the Wikipedia policy. It’s not even a guideline. It’s what some editor wrote to explain the guidelines to people who didn’t know anything about them. Then I started thinking: I’m a member of an online support group for a rare disease. A normal person wouldn’t get anything out of my group. In fact, they might not find any information about the disease at my group, especially if they only read a few days’ worth of messages. We go weeks at a… Read more »

e-Patient Dave
Guest

I’m open to a policy of telling people *where else to look*, including disclaimer. That’s fine. But actively suppressing that information doesn’t work for me. Like it or not, Wikipedia has become the place where many people go to find out about anything. It’s fine with me if they declare “We’re a reference encyclopedia – if you’re looking for xyz, go look here.” Hmmm, speaking of that, what do we (all) think about the WP page on support groups? Horrors, it has a link to a list of 12-step groups! And that has a link to a list of mental… Read more »

bev MD
Guest
bev MD

I’m kind of peripheral to this as I only use Wikipedia when referred by another site (mostly my hobby, botany). But just looking at this from the outside, it seems that Wikipedia’s policy is an attempt to bend over backwards to avoid distorting influence from special interest groups. Frankly, given the way those groups have taken over our political system, that attitude is to be supported, not decried.
As for using Wikipedia as an authoritative source for life-critical medical information – no, I wouldn’t. There are too many other good sources – the National Library of Medicine, for one.

Gilles Frydman
Guest

Unfortunately, Jon, the conversation took place with 4 editors. It became clear that they are all equally inflexible and/or unwilling to disagree with the others. I agree that the policy doesn’t ban links to discussion forums but ALL the editors have transformed the policy into their own official ban, which they justify with completely unwarranted and uneducated negative remarks about those we call e-Patients. My comments only concern articles that fall under the purview of WikiProject Medicine and should not be construed as a wholesale attack on Wikipedia. It is the WIkiProject Medicine Manual of Style and the discussion about… Read more »

Jon Lebkowsky
Guest

That’s a needless ad hominem attack.
If you take time to read the external linking policy, you’ll see that it’s flexible (it says to avoid links to discussion forums, but it’s not an outright ban). The editor was being more inflexible than the policy.

Ken Houghton
Guest

Give you a hint, Jon L: when your declared policy is used as an excuse not to provide information, then you don’t have a “disagreement.”
You have (choose one) (a) a sh*tt* *d*t*r who needs to be removed since s/he is incapable doing their job or (b) a policy that deserves every bit of approbation it’s getting.
Your call. Oh, sorry, you already picked (b). Your idiocy. (don’t like being tarred; get out of the bucket.)