Op-ed: Wikipedia isn’t really the patient’s friend

in Patient | 23 responses

The following op-ed was published on July 15th, 2009 in the USA Today.

“I researched my condition on Wikipedia.” That’s what more doctors, myself included, are hearing from patients every day.

Wikipedia is the Web’s most popular online encyclopedia. Its more than 13 million articles cover almost every topic imaginable. It is among the most visited sites primarily because its articles routinely show up near the top of search engine results, like those from Google.

The ability to research diseases and drugs on the Web has empowered patients in managing their health. More than 160 million adults in the U.S. have gone online to look for medical information. With two-thirds of them beginning their Internet health inquiry using a search engine, it is no wonder that Wikipedia has become a common medical resource for patients. More than half, according to the Pew Internet & American Life Project, reported that their most recent Web session influenced how they took care of themselves or for someone else, illustrating how critical online health information has become.

But Wikipedia’s medical entries — as has been reported with other entries on other issues — are not reliable for the simple fact that they are prone to manipulation, as is all Wikipedia content.

Anyone can write and edit its topics, which means millions of non-doctors can essentially dispense medical advice. In several instances, pharmaceutical companies intentionally tried to delete or modify Wikipedia entries that mentioned adverse effects associated with their drugs.For example, in 2007, a claim that the psychiatric medication Seroquel made teenagers “more likely to think about harming or killing themselves” was deleted from the Wikipedia entry by a computer registered to AstraZeneca, the drug’s manufacturer.

Even more troubling is that doctors, too, appear to be increasingly reliant on Wikipedia. According to a survey of 1,900 physicians by Manhattan Research, a health care market research firm, nearly half of doctors going online for professional purposes reported using Wikipedia as a source of medical information. That number has doubled in the past year alone.

The threat is obvious. Can you imagine your doctor stepping out from the exam room, tapping away at his or her computer seeking the advice of Wikipedia? Research has documented the danger. A study from The Annals of Pharmacotherapy compared drug information from Wikipedia with the Medscape Drug Reference, a resource whose information is reviewed by pharmacists. Researchers found that Wikipedia omitted important information, including drug side effects. Another entry overlooked a commonly prescribed pain medication’s association with miscarriages.

This isn’t to say patients shouldn’t research their medical conditions to become better informed. But it’s imperative that patients not rely on Wikipedia as the primary source of their health research. Websites sponsored by the government, academic medical centers, or professional medical societies all have more authoritative information that can be relied upon.

Jay Walsh, head of communications at the Wikimedia Foundation, says: “Wikipedia shouldn’t be taken as a 100% reliable source of medical information. … But Wikipedia always strives for a degree of improvement.”

And as for physicians, there’s no excuse turning to Wikipedia as a source when reputable medical resources are a few more keystrokes away. Although these other sites might require more time for a busy clinician, doctors need to eschew convenience to ensure their decisions are based on sound medical information.

Quality patient care demands no less.

Comments

William Hsu
Telling people(including doctors) to stop using wikipedia for thier information is pointless. Reguardless of verdacity and manipulability of information, social trends are to the point that it isn’t going to happen.
If you look at the history of social trends, internet or otherwise- once something has enter social mainstream, it’s really hard to remove it from social mainstream. It’s would be like telling people to start reading newspapers or to stop using facebook.
Instead of sounding like that crotchety old man who condemns new social trends, I suggest going in a different direction. Doctors(as a whole) do too little to control the health information(dysinformation) on the internet- this is a diservice to the public. Instead of shying away from sites like wikipedia, it would be better if doctors were actively policing such sites. The public and doctors would benifit because more truthful information would be available to the public.
encouraging doctors not to use(and police) wikipedia would be a disaster. We would be sending the general public straight into the lion’s den- where any random drug company, lawyer, or random person with a vendetta against vaccines can interject thier two cents without anyone testing the verdacity of thier information they post.
Paul Hunstad
What frightens me more than Wikipedia are the ridiculous TV ads by Big Pharma ™ which convince everyone and their dog that they need “X” medication for supposed “Y” condition. Side effects and contraindications are read quickly or listed in fine print on the TV screen so that people, in effect, don’t hear or see it. The only “source” of information is the drug company which is out to make a buck.
Wikipedia, on the other hand, is non-profit and is a good source of information if it is well-referenced (references from peer-reviewed journals).
When I was developing fever and flu-like illness repeatedly after drinking Diet Coke*, I began to research saccharin on Wikipedia and discovered it is a sulfonamide derivative. Well, I can’t take sulfonamides or their derivatives due to severe non-allergic hypersensitivity reactions. Thanks to Wikipedia I no longer get those reactions as I have stopped drinking Diet Coke or consumed anything with an appreciable amount of saccharin in it.
* Diet Coke where I live contains saccharin and cyclamate
Kim
Doctors could probably curtail some Wikipedia usage by providing good thorough information materials themselves and by being available for follow-up questioning.
Barring that…I would love to see a reputable source of information online written to the reading comprehension and scientific literacy level of the typical Wikipedia article, with foot notes. Online info intended for patients usually seems to be written to a middle school level at best and rarely provides references for further reading.
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Ed Dunkle
How about the Mayo Clinic site? I use that and trust it a lot more than Wikipedia. Still, my accuracy in diagnosing myself is about 1% It’s kind of pathetic.
Classof65
I agree that the site should be monitored by qualified persons or a new or established site should be advertised by the AMA or another respected medical body so that people will know where to look for reliable and up-to-date medical information written in easy-to-understand language. However, I would like to know what bad effects users have suffered from treatments or medications…
We are constantly being told that we should actively participate in our medical care, but without dependable sources of medical information we cannot do so. Doctors no longer seem to have the time to talk to us about these issues and we cannot rely upon the information provided by the pharmaceutical companies or even the FDA.
Finn
I try very hard to point my friends away from Wikipedia and toward more reliable sites when they’re looking for health information. Accurate, patient-friendly information is available all over the Web at sites run by government agencies, nonprofit groups like the American Diabetes Association and the American Cancer Society, and by many major hospitals.
If I ever found out my doctor was looking up medical information on Wikipedia, I’d fire her instantly, report her to the state licensing board, & find myself a doctor less likely to kill me. Anyone can change a Wikipedia entry: a pharmaceutical company, an anti-Western medicine crank, a quack, a disgruntled patient, a 15-year-old with a sophomoric sense of humor. It’s bad enough when patients limit their “research” to Wiki entries; it’s actually dangerous if doctors do it.
Anonymous
There is Medpedia, which supposedly allows editing only by medical professionals, but I have seen entries where a viewpoint espoused by a minority of medical professionals is promoted and the viewpoint espoused by the majority of medical professionals is not mentioned.
But really, Wikipedia / Medpedia are microcosms of the internet in terms of the differences of opinion that one can find on something. Someone reading something on Wikipeda / Medpedia that may be misleading or be missing information or take one side of a disputed issue without mentioning the other side or even mentioning that it is disputed could easily have read something just as misleading, incomplete, or one-sided on some other web site.
arb
The point made above that “Doctors could probably curtail some Wikipedia usage by providing good thorough information materials themselves and by being available for follow-up questioning” is a good one.
A phone call with follow up questions to my pcp (from a super-rushed annual exam which left me too flustered to recall the questions I had) was returned by a med tech -
http://sideeffectsmayinclude.wordpress.com Whitny
You bring up an interesting point, but I feel like you are implying that incorrect or incomplete information on Wikipedia is a major source of patient harm.
You state the research has documented the danger of MDs looking up information on Wikipedia, but you only provide an example of a drug entry that did not mention a side effect. And this post doesn’t mention how doctors actually use Wikipedia–do they rely exclusively on the website to diagnose and treat, or do they occasionally look up something to jog their memory? And do they accept all the info that’s presented Wikipedia as gospel, or do they selectively use information alongside all of the other information they’ve gained from their rigorous education and experience? Do they use Wiki to look up drugs, to look up diseases, or to look for a brief explanation to give to their patients? Are MDs really expecting a thorough and exhaustive treatment of a complex medical subject on Wikipedia, or do you think the information is used a bit more judiciously? If an MD has a doubt about a drug side effect or something of that nature, do you think perhaps they cross reference more “reliable” publications when seeking information? If we’re going to “study” if MDs use Wikipedia, shouldn’t we actually study how they use it?
That drug companies tinker with Wikipedia entries is pathetic and a little scary, but in all honestly it’s probably one of the LEAST harmful things they do. I bet you there’s probably far more patients harmed by the Pharma lobby, by perks that pharma companies offer MDs for promoting their drug, by inflated prices for life-saving meds, by advertising, and by a whole host of other information spin tactics. For instance, why did it take the FDA so freakin’ long to add a black box warning to Procrit? Is it because it was one of the most lucrative drugs ever marketed? hmm…
That’s my two cents.
k
Nobody should consider Wikipedia a reliable source, especially for medical issues. Unfortunately, everyone has heard of Wikipedia and fewer people have heard of the inherent unreliability of Wikipedia content, or of medical sites with high quality information like PubMed, Medscape, et al.
http://davidbeharmdejd.blogspot.com David Behar, M.D.
The doctor is nit picking tiny mistakes or gaps of information on Wikipedia. He is as free as anyone else to fix these.
Wikipedia and other sites like it are not written by self-serving doctors, as other health sites are. Here is why they are good, as they are.
1) One of the several ways to reduce health costs, and to enhance health is to have more people take care of their own problems. Many hundreds of medications should be available over the counter, their being safer than the current medicines both in use and in overdose. For example, as people treat their colds and cuts, they should treat their own blood pressure, most of which is hereditary or idiopathic. You do not need a doctor for a cold, you need one for pneumonia. You do not need a doctor for ordinary high blood pressure, but need one for treatment resistant hypertension. Wikipedia may link to current professional guidelines, and patients may take from them whatever is useful.
2) Because 80% of the population has internet access, and the rest have it at a library, the claim of lack of informed consent in a medical malpractice lawsuit should be dead. Everyone now has specialist level amounts of information about treatments, including the views of disgruntled patients, far more negative than that of the doctor.
3) One of the advantages of Wikipedia is that they carry no ads. Imagine an article bashing a blood pressure pill in a commercial web site, as an ad for it is sitting to its side. It would never ever happen. For an example, see KevinMD. Find me an article in KevinMD critical of an advertiser. Even one would suffice. So that remark about tracing a change to Astra Zeneca computers is hypocritical. And the change was correct. Their medication does not cause suicidal ideas in people. You cannot criticize a change unless it is false, and that one was true.
Chris
I agree with Whitny. I use Wikipedia to jog my memory or to find out what some small ancillary detail is. I have never used it to make or support any important decision, but if I were filling out a survey that asked “Have you EVER used Wikipedia to look up medical information?” then I would answer yes.
If you went to see your ophthalmologist and told him you had Lynch syndrome, and he went, “Gee, I can’t quite remember what that is,” and looked it up on Wikipedia and remembered it’s a colon cancer disorder, then who cares?
http://kidney-beans.blogspot.com/ dennis
It’s a bit surprising that doctors are using wikipedia a lot. I would’ve thought that they would be the ones who would be supplying information or even have more information than that on wikipedia.
Knowing this, the important thing is to be able to cross-check the information with different sites like webmd.com and mayoclinic.com.
On the flip side, the knowledge that wikipedia gives patients is a big boost, as the cost of healthcare is high. It helps that people able to empower themselves with the information.
http://www.familydoctormag.com Leigh Ann
Argh! Doctors are using Wikipedia? Say it ain’t so! I thought it was bad enough when journalists were caught lifting from it.
There should be a disclaimer or something: “CAUTION: Medical information may have been written two minutes ago by a 14-year-old who just happened to be bored. Trust at your own–and your patient’s–risk.”
Leigh Ann Otte
Managing Editor
My Family Doctor magazine
http://officialtrash.com officialtrash
@Leigh Ann: Ok… I suppose you’d rather have them buy a perscriptio…. err… subscription of your magazine instead, huh?
There should be a disclaimer on your rag as well: “CAUTION: Articles and ads may cause you to think you have a disease you don’t. Instead of reading medical magazines how about go outside for a walk? Oh, and drink plenty of water.”
http://www.familydoctormag.com Leigh Ann
@official trash While it is true that we try to convince people they’re sick in every way possible, just for the pure pleasure, we unfortunately do not have ads and therefore cannot reap the benefits of further making money off of people’s misery. Thank you for the idea though.
Leigh Ann Otte
Managing Editor
My Family Doctor magazine
http://toddbradley.com Todd Bradley
I suffered for 14 years with an inner ear disorder called superior semi-circular canal dehiscence syndrome. During that time, I saw 3 family doctors, 2 ear surgeons, 2 audiologists, 1 chiropractor, 1 acupuncturist, and 1 cranial sacral massage therapist. All these were trained medical professionals (obviously, some “traditional” and some “alternative”).
All 10 people mis-diagnosed the problem, and many of them treated me for the wrong thing, including a totally unnecessary surgical procedure. Despite their training and access to all these traditional resources, this one article on Wikipedia told me more information about this disorder than all 10 of those people combined.
http://neuropathologyblog.blogspot.com Brian E. Moore, MD
An answer to the growing concern that medical professionals and patients have become too dependent on Wikipedia.com for quick answers about medical topics, Medpedia.com was launched this past February. Now if you need to look up a particular disease or syndrome, Medpedia is available as an authoritative online reference written by approved professionals. Only physicians and Ph.D.s in a biomedical/health field can edit the Medpedia database. Over time, Medpedia will be a repository of up-to-date medical information contributed and maintained by health experts around the world and freely available to everyone. Medpedia trumps Wikipedia with regard to authoritative reliability, as content in Wikipedia is authored anyone in cyberspace who wants to contribute. And Medpedia comes onto the scene with considerable authoritative weight behind it: Harvard, Stanford, UC Berkeley, and U Michigan are chief backers of the project.
Medpedia offers more than just a reliable online medical encyclopedia, the site also includes a Professional Network and Directory (for health professionals and organizations) and Communities of Interest, in which medical professionals and non-professionals can share information about conditions, treatments, lifestyle choices, etc.
Nancy Brown, CEO of The American Heart Association said: “This platform provides new opportunities for our physician audience to network and share knowledge with other medical professionals around the world who are not a part of the American Heart Association. And, Medpedia’s medical encyclopedia provides the public with convenient access to credible health information, with varying perspectives and resources included.”
I am one of the volunteer editors on Medpedia and have already contributed some photomicrographs and articles to the Medpedia medical encyclopedia. I encourage my colleagues to get involved with a project that may turn out to be the biggest and best source of medical information on the web.
http://toddbradley.com Todd Bradley
I wish you all the best success, Dr. Moore. But there may not be a “critical mass” of people who (a) are doctors and (b) want to spend their time editing an online database for betterment of humanity to catch up with and surpass Wikipedia. For something like Wikipedia or Medpedia to work, you’ve got to get from cathedral mindset to bazaar mindset.
Case in point: I searched Medpedia for information on “superior semicircular canal dehiscence syndrome” and for “Minor’s syndrome” and for “perilymphatic fistula” and for “autophony”. I found nothing. And though I know more basic information about these topics than at least 50% of doctors in the US, I can’t add a single bit of content to Medpedia.
“Authoritative weight” is irrelevant if there’s no content. A better approach? Find domain experts to act as editors or approvers who oversee user-contributed content, much like Wikipedia is now doing with biographical entries.
http://neuropathologyblog.blogspot.com Brian E. Moore, MD
I hate to admit it, but you made some good points, Todd. Thanks!
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JH
This is not unique to patient care – this is a systemic problem with deep roots in our education system. Students should be taught to LEARN, and learn responsibly. My daughter graduated high school with no requirements for a research paper. I may be aging myself, but I was doing research papers in middle school. I learned to *research the resource* as well as the data provided. That said, I do believe that patients who take enough time to read about health care are generally more educated – even if they are misguided, than those who invest no time or energy into their personal care.