Cleveland Plain Dealer on Medical Wikis

(Be sure to check out the List of Medical Wikis)

I got an email a couple of weeks ago from Cleveland Plain Dealer reporter Zachary Lewis. Zach was writing an article about medical Wikis (specifically about Ask Dr. Wiki) and wanted an interview.

The article came out today, and isn’t bad as a whole.

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The first line, though, is awful:

Think of it as a librarian with a stethoscope.

That loud thumping sound you hear? That’s me beating my head against a wall in frustration with the continued misperception of what medical librarians do.

I’m quoted thusly in the article:

“Medical information is used to make potentially life-changing decisions,” he wrote. “The consequences of inaccurate information could be extremely harmful.”

Here’s what I actually wrote:

“If a middle-schooler foolishly uses Wikipedia as his/her only source for a class report and gets the birth date of Josef Stalin wrong because someone added it incorrectly, little real harm is done- but medical information is used by medical professionals and healthcare consumers to make potentially life-changing decisions. The consequences of inaccurate information could be extremely harmful.”

So the quote should have been written this way:

“…[M]edical information is used…to make…life-changing decisions. The consequences of inaccurate information could be extremely harmful.”

I’m not surprised by it, but I really don’t appreciate Zach misquoting me in this manner. It strikes me as sloppy reporting at best, dishonest reporting at worst. Those of you with a degree or experience in journalism should please feel free to weigh in if I’m off-base on this.

Also a little bit odd: The article doesn’t give the URL for my blog, Ves Dimov’s blog, nor Graham Walker’s blog).

For your edification, here’s the rest of what I gave Zach Lewis on medical Wikis via our email interview. Bolded questions are from Lewis.
_________

How did you first hear about AskDrWiki? What was your first impression of it?

I believe I first read about AskDrWiki on a blog maintained by Dr. Ves Dimov, Clinical Cases and Images.

My first impression was that it was an excellent idea that wasn’t being executed with as much caution as I would have hoped.

Based on my web research, you seem to be one of the site’s staunchest critics. Can you summarize your main points against it? How might patients, particularly, stand be negatively affected by it?

The idea of a medical Wiki for clinical professional is an excellent one. The concerns I’ve expressed about AskDrWiki are in the problems associated with having a medical information resource that anyone can edit at any time and that doesn’t have clearly-established editorial standards to adhere to.

If a middle-schooler foolishly uses Wikipedia as his/her only source for a class report and gets the birth date of Josef Stalin wrong because someone added it incorrectly, little real harm is done- but medical information is used by medical professionals and healthcare consumers to make potentially life-changing decisions. The consequences of inaccurate information could be extremely harmful.

Perhaps as importantly, clinical professionals are becoming increasingly aware of the need for authority in information resources they utilize. Without some sort of editorial control to make sure the content added is expert, AskDrWiki would have no authority and be dismissed by a great number of clinical professionals. This could slow its growth, and I’d hate to see the fruition of such a good idea hindered in this manner.

On the other hand, what’s good about it, in your opinion? How might doctors and/or their patients benefit from this?

Wikis are designed to make it easy for a number of people to collaborate on documents, and the idea of leveraging the combined knowledge of clinical professionals to create a resource of use to thousands is a fantastic one. I think that librarians don’t object to people using Wikipedia as a first stop to get a general overview of a topic and some suggestions for further reading any more than they’d object to using Encyclopedia Britannica this way- as long as it isn’t the information-seeker’s LAST stop. Similarly, a resource like AskDrWiki could be enormously useful to clinicians who need a free, quick overview of a medical topic that has been written by a qualified medical professional.

However, AskDrWiki really is written for clinical professionals and sometimes uses complex clinical language. The recent Nature Medicine article wrongly suggested this was a fault, when in fact it is a feature. Not every Wiki is intended to be a populist exercise for the general public, and AskDrWiki may well be as difficult for patients to use as an article from the New England Journal of Medicine- and that’s okay. There need to be separate resources created for healthcare consumers that are written in such a way that they don’t require a clinical background to read and understand.

I really appreciate the desire of the editors of AskDrWiki to encourage the participation of all clinical professionals and not limiting participation solely to physicians.

Has your opinion of the site changed now that they’re instituting the credential review policy? And what do you think of that policy?

I was sincerely impressed with the physicians behind AskDrWiki for listening to the concerns of information professionals, considering their arguments, and adopting this policy. It demonstrates their desire to make AskDrWiki a reliable, useful, trustworthy information resource, and goes a long way towards resolving my concerns. This policy doesn’t go as far as I’d prefer, but the idea of collaboratively-created, online medical information resources is still a very new one, and I am increasingly confident that the physicians at the Cleveland Clinic who maintain AskDrWiki will continue to embrace good ideas from outside their endeavor and will take appropriate steps to ensure the information it contains is accurate.

Is there a way to have a truly free, open, and 100% safe medical wiki?

This really gets down to the question of what a Wiki is. I would argue that a Wiki is a kind of platform for building a Web site that can be collaboratively edited by users with very little technical knowledge of the Web. Many people believe that a site isn’t really a Wiki unless it can be edited by anyone who wants to edit it. A Wiki with a restricted user base is still a Wiki.

If by “free” you mean “without cost to create,” no. There are always expenses to publishing in any medium.

If by “free” you mean “without cost to users,” sure.

If by “free” you mean “open to be edited by anyone who feels like it,” absolutely not.

I believe no medical information resource is ever 100% safe, but that those with clear, committed editorial policies are certainly likely to contain fewer mistakes. A medical Wiki that makes use of good editorial policies will certainly be more safe than one that does not.

How do you think patients might react if they thought doctors were consulting AskDrWiki for information?

I’m no expert in patient satisfaction, so I can only guess how I myself might feel about it as a patient.

If my doctor told me that he was treating me with advice he got from an anonymous online author and didn’t look it up in published medical literature before trying it on me, I’d get myself a new doctor. If my doctor told me that he first heard about a treatment from an anonymous online resource and didn’t suggest it to me until after looking it up in reputable, peer-reviewed medical information resources, I’d have no problem with that.

If AskDrWiki only allows trained medical professionals to write, it can be relied upon as much as any opinion from one other medical professional. But I wouldn’t want my doctor to make my treatment decisions based solely on the advice of one of her colleagues with no other investigation or research. Would you? As with Wikpedia, there won’t likely be anything wrong with a physician starting her/his research with AskDrWiki, as long as the research doesn’t stop there.

How does a wiki like this differ from traditional, accepted medical reference books, etc.?

Medical textbooks and journals require authors to have pertinent educational credentials and they have well-defined editorial policies to adhere to.

Thanks to their recent change in policy, AskDrWiki is now requiring the educational credentials. That’s excellent, but AskDrWiki doesn’t yet have a clear editorial policy and process by which information may be reviewed and kept up to a high standard that can help users feel confident in the quality of the information.

For instance, it isn’t clear to the reader what will happen when a gastroenterology article is submitted. The editors of AskDrWiki are electrophysiologists and cardiologists- Will they ask a colleague who is a gastroenterologist to review it for accuracy? AskDrWiki might be well-advised to write up a clear and detailed editorial policy, including notes on its intended purpose, sponsors, users, minimum requirements by which articles are approved, and disclaimers. This should be posted prominently on the site and adhered to without deviation. Articles could be marked to clearly state whether or not they have undergone editorial review.

What are your opinions of some of the other medical wikis, like Ganfyd and WikiMd

I think that PubDrug (http://www.pubdrug.org/) has enormous potential that seems to be developing in a very impressive manner. It has a clearly-defined editorial process, is building its editorial board, and is progressing both steadily and cautiously in this new medium as it works out how to be authoritative in a Wiki model.

Ganfyd has challenges before it that are similar to those faced by AskDrWiki, but where Ganfyd seems to have no names of responsible administrators posted, AskDrWiki names its editors and administrators clearly- and I think that’s a good start towards accountability that helps build confidence in their site.

WikiMD has significantly less oversight than Ganfyd or AskDrWiki because it allows anyone to register and edit, regardless of their qualifications to share medical advice. This is a problem shared by NursingWiki (http://en.nursingwiki.org/), WikiSurgery (http://www.wikisurgery.com/) and others.

It is important to remember that when the Web was new, it took some time for medical information professionals to work out how to create a good, useful, and responsible Web-based medical information resource. Wikis are a new sort of Web site, and it will take some time for the best of them to find their feet and figure out the best ways to work. Ask Dr. Wiki could, if it’s editors choose, be a leader in this way- showing other medical Wikis how it should be done.

7 thoughts on “Cleveland Plain Dealer on Medical Wikis

  1. Those of you with a degree or experience in journalism should please feel free to weigh in if I’m off-base on this.

    I have some of each.

    You’re not wrong: it’s a serious breach of journalistic ethics to doctor quotes. Unfortunately, it’s also pretty common.

    The AP stylebook is pretty clear:

    quotations in the news
    Never alter quotations even to correct minor grammatical errors or word usage. Casual minor tongue slips may be removed by using ellipses but even that should be done with extreme caution. If there is a question about a quote, either don’t use it or ask the speaker to clarify.

    If a person is unavailable for comment, detail attempts to reach that person. (Smith was out of the country on business; Jones did not return phone messages left at the office.)

    Do not routinely use abnormal spellings such as gonna in attempts to convey regional dialects or mispronunciations. Such spellings are appropriate when relevant or help to convey a desired touch in a feature.

    FULL vs. PARTIAL QUOTES: In general, avoid fragmentary quotes. If a speaker’s words are clear and concise, favor the full quote. If cumbersome language can be paraphrased fairly, use an indirect construction, reserving quotation marks for sensitive or controversial passages that must be identified specifically as coming from the speaker.

    CONTEXT: Remember that you can misquote someone by giving a startling remark without its modifying passage or qualifiers. The manner of delivery sometimes is part of the context. Reporting a smile or a deprecatory gesture may be as important as conveying the words themselves.

    In this case, since you submitted your answers in written form, his editing is especially inexcusable. I’d send a polite but firm note to his editors.

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  3. Thanks for posting the entire interview. It is very interesting and gives us a better understanding than your brief quote in the article.

  4. Hi Michelle. :)

    Yeah, I think the reporter really wanted to cast me in the role of someone who disliked AskDrWiki conceptually.

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