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.
[][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][][]
[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.
Categories: Uncategorized
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 some degree of vetting, rather than the more likely case of someone adding the link and nobody noticing or having the time/energy to check it out.
If your web browser is hard coded to only view WikiPedia and content linked from there, you are likely at a disadvantage. If you are, however, able to use any number of search engines or navigate to the consumer health pages published by the Mayo Clinic, AAFP or the National Library of Medicine you have many other choices besides WikiPedia.
This is not a problem with WikiPedia, but with people being so narrow minded or so lazy that they are not willing to look at other sources. Of course, you could also try and do things “old school” and schedule an appointment with your physician to just talk about your condition and options. This needs to be outside the context of a regular visit, since they will need time to prepare.
Given that most physician’s don’t get paid for this sort of work, and it takes about the same time as seeing 3-4 regular patients (who otherwise wouldn’t get seen that day) understand that it is sometimes hard to schedule. Many specialty clinics will also have dedicated nurses to help with providing more information, but again, you have to ask and schedule it.
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
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 supposed to be in the business of screening links, as well, allowing some and barring others? Give it a rest, my friend. You’re not only being imtemperate, you’re pushing one of those ideas, like the Iraqi War, that would soon be all about the unintended consequences.
> If you need to save your life, fast, you
> should *not* be going to Wikipedia. A librarian,
> maybe.
Ummmmmmmm.
How `bout a doctor?
t
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 can be at stake, I agree that Wikipedia is correct in not wanting to be a possible source of misinformation.
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. And be ready to engage in a mult-day, multi-editor discussion for each and every link. One at a time.
Sorry, but most of us don’t have that kind of time or patience.
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 is what I suggested. I appreciate the argument because I think it was enlightening and I hope others read it.
But note that I added the link back to the page, and no one so far has removed it. I think that’s because we made our point, and assuming the link stays, I think you can safety say that neither the policy nor the editors are inflexible.
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”?
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.
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 time with messages that are just “Hope you’re doing okay” or “I heard this great joke” or “Anyone heard from John recently?” These are my friends, and I wouldn’t trade them for anything, but it’s not really very educational. If you wanted to learn something about this disease, you’re better off reading one of the websites that has actual information on it.
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 health groups! Call the police!
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.
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 it that are the topic of the long conversation I had with the editors.
What is probably the most important sentence in the Manual of Style follows: “Wikipedia is written for the general reader. It is an encyclopaedia, not a comprehensive medical or pharmaceutical resource, nor a first-aid (how-to) manual. Although healthcare professionals and patients may find much of interest, they are not the target audience.” This has been invariably translated by the medical editors as “Wikipedia is not for patients. NOT OUR PROBLEM”. Besides the fact that I find this policy completely absurd, what is much more disturbing is the fact that this strong opinion, held by all the editors has very profound consequences for the content of all medical articles in wikipedia but is not advertised on every page.
Therefore, I am going to request a change in the official Wikipedia editorial policy, asking that every medical article in Wikipedia should include at the top of the page a clear statement that Wikipedia articles are NOT written for patients. Anyone looking for information regarding a medical condition should be made aware of this system wide limitation.
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.
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.)
JD,
> vehemence is lost on me
Honest question: ever had a fatal disease where you needed to learn fast?
I commented above… out of my disease, I too ended up a member of the e-Patients group. I’ll tell you, we are deeply committed to patient empowerment, especially enabling and equipping patients to play an active role in their care, in the new world of participatory medicine.
There’s been a lot of research, thinking, and writing going on to develop that discipline for several years. (See the white paper on the e-patients site.) Yet when I talk to people in my life, I find that *nobody* has heard of the concept.
I can’t speak for Craig, but *my* vehemence above is due to the fact that time after time, when Gilles tried to add simple factual statements, they were immediately deleted. In one case he was asked, somewhat flippantly, for refereed journal evidence to support his statement; when he provided it, the position didn’t change. That constitutes actively blocking important information that’s not generally available elsewhere.
I completely agree with you about prominent support groups. Here’s the thing: pick a serious disease and try to find any *active* support group (famous or not) that doesn’t have good information.
I’ve heard that Wikipedia periodically goes through throes like this, working something out. Fine, so be it – let someone go in and wack that wacko “prickly editor.” Until that happens and a new policy evolves, my advice to other patients will continue to be that Wikipedia is useless, due to a policy of not steering people to peer support groups, which is where they need to be.
Note: I didn’t say they don’t need other resources – I said they do need a good peer group.
The vehemence of this post is lost on me. There is good reason to exclude certain types of content and links…particularly advertising. Wikipedia could easily be overrun by touts if it doesn’t have some policies in place and if it doesn’t turn a skeptical eye to links that are effectively promotions.
That said, I don’t get the decision to rule out prominent support groups like PatientsLikeMe. It is a significant social phenomenon, and as such deserves an entry. If Wikipedia has entries for corporations (which it does, even startups like 23andMe) or religious groups (which it does), then certainly it should have entries for prominent disease support groups. In fact, it does have an entry for Alcoholics Anonymous. I also checked the entry for alcoholism, and it lists several other support groups there.
My guess is that this case is either the result of a prickly editor, or s/he doesn’t understand the significance of PatientsLikeMe. It is not a general failing of Wikipedia.
As for the lengthy discussions about what to include/exclude, what would be preferable? No discussion? Hidden discussion? Isn’t this blog entry itself an example of exactly the kind of heated argument about what to include that is being derided here? It just being held on The Health Care Blog rather than within Wikipedia. People care, they get passionate, they argue…sometimes interminably.
Like John and Gilles, I’m part of the e-Patients group. When Gilles mentioned the conversation with the Wikipedia editors, I read most of it and made minor contributions to the discussion. I’ve been an advocate of Wikipedia for years, and I’ve contributed some content.
I think the post above is somewhat misleading, and I disagree with the “cultish smuggery” comment. I also find much value in the sometimes long, sometimes contentious discussions that are attached to Wikipedia articles. I believe that knowledge is a process, and that process is transparent in the Wikipedia discussions. I much prefer that context to supposedly authoritative sources that expose none of the doubt and uncertainty around supposedly “authoritative” knowledge.
The e-Patients group has had much positive discussion about the democratization of knowledge. Wikipedia represents just that – warts and all.
Gilles wasn’t confronted by a team of editors opposing his views. The issue was with one editor and with a policy that does, in fact, have some flexibility (as many Wikipedia policies must). Though, with Gilles, I took issue with the editor in question, I don’t think one can make general, negative assumptions about Wikipedia based on this disagreement. In fact, not at all: that we were having the discussion at all is, in my opinion, a strength of the system, not a weakness.
If Wikipedia wants to avoid the area, there’s no reason the ACOR communities can do their own ACORWiki
Starting their own Wiki which would enable them to pool rapidly their combined knowledge and gain a substantial web presence. Wikis are by nature open, easy, collaborative web structures, and the mechanisms are widely available.
Wikipedia may have it faults, but there’s no reason it has to be the only game in town.
http://www.wikispaces.com/
If Wikipedia wants to avoid the area, there’s no reason the ACOR communities can do their own ACORWiki
Starting their own Wiki which would enable them to pool rapidly their combined knowledge and gain a substantial web presence. Wikis are by nature open, easy, collaborative web structures, and the mechanisms are widely available.
Wikipedia may have it faults, but there’s no reason it has to be the only game in town.
http://www.wikispaces.com/
So, Stephanie: I see both sides of this. Interesting point.
Speaking as another person who uses Wikipedia all the time, as the quickest source to a passable answer, I agree, it’s a great way to write something quick.
But I have another side: last year I got diagnosed with a nasty cancer, with median survival time 5.5 months. All out of the blue, boom, you’re dying. Tell the kids, tell your mom, tell your friends, bam. Listen to “Oh my god” a hundred times over; listen to the tears.
And get to work as fast as you can, to do everything you can to improve your odds.
And you know what? Wikipedia was USELESS. You know why? Because all the info I needed, LIFE-SAVING info, was to be found only in online support groups. And Wikipedia won’t talk about them.
Now, how about that? How about if instead of just needing to write a good paper, your LIFE depended on whether it was right?
In reality, Wikipedia’s not bad (I use it all the time, as I say), but it’s half-assed: they have no commitment at all to providing the most useful information. In fact they’ll block it.
They completely have their head up their butt about this. (Mind you, I still use it every day – I’m just talking about the case when you need the really accurate no-kidding best information, not just something good enough to pass in to a teacher.)
You can tell someone has their head up their butt when they can’t see what’s right under their nose.
Conversely, within three days of discovering my cancer community on http://acor.org, I’d found dozens of people in my exact same situation who’d been studying the disease for months or years, and they’d steered me to the best doctors in my part of the country. But the Wikipedia dorks won’t even let people say such support exists! What is up with that?
Who knows, maybe it is pure self-interest – maybe they’d rather block me from saving my life than give any traffic to another web community. How bad does THAT suck, if it’s true?
* * * * * * * *
My conclusion: Wikipedia is,
by its own declaration,
out of touch with reality
for anything medical.
It is a *useless* place
to research the latest
about any condition.
Only peer patient communities
can serve that need.
* * * * * * * *
It’s one thing to say Wikipedia *is* not a support group; it’s another to deny their existence, or, worse, impede others from getting help.
“Not an advertising opportunity,” my butt. That’s like saying 911 signs are ads promoting the police department.
Craig,
the entire exchange between a group of WP medical editors and myself is available online at http://en.wikipedia.org/wiki/Wikipedia_talk:Manual_of_Style_(medicine-related_articles)#External_Links_to_Medical_Online_Communities.
You will see that I did spend a tremendous amount of time to explain how medical peer communities are very serious sources of information and are often irreplaceable.
The ACOR communities are very well established, often with more than 10 years experience and with large memberships (the largest ACOR community has over 2,600 active participants). We have also ran, with a large team of nationally recognized experts from the UNC School of Public Health, the largest and most complete study ever conducted on medical online communities. So I acted as an ambassador for all of us who know what the wisdom of e-Patients can achieve. But nothing helped in the exchange with the WP Medical editors.
The experience was very frustrating. All of us involved in creating and managing information systems for participatory medicine have clearly a lot of work to do to convince many doubters that the paradigm shift we are experiencing is a very good thing. I found very surprising that editors of the medical portion of WP, one of the largest social networking sites, have so little understanding of how the internet has radically transformed the medical constructs for those suffering from rare disorders. If they are unaware of that radical shift they cannot understand the power of any Health 2.0 application.
In a WP article last year, it reported that the government started opening up the process of reviewing patents to the modern font of wisdom: the Internet. The Patent and Trademark Office started a pilot project that would post patent applications on the Web and invite comments. A first for the federal government, the system resembled the one used by Wikipedia.
For the first time in history, it allowed the patent office examiners to open up their cubicles and get access to a whole world of technical experts. For generations, the agency responsible for awarding patents had kept its distance from the very technological advances it has made possible. No more!
Anyone who believed they knew of information relating to a proposed patent would be able to post this online and solicit comments from others. But the sudden availability of reams of information, which could be from suspect sources, meant the program had to include a “reputation system” for ranking the material and evaluating the expertise of those submitting it.
The incentive to manipulate the system is immense. There will be a degree of “gaming” the system. I’m sure Wikipedia and the Patent Office has been doing their best to assure that any outcomes can be trusted.
Some people may disparage Wikipedia, but for high profile, contentious issues, it’s has been one of the best of all sources available for a balanced and comprehensive consideration.
Wikopedia has it’s limitations but as a college student I can tell you it’s the best things since sliced bread. I think all college students would agree that we would not survive without it.