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Snake Oil: The Accuracy of Medical Information on the Internet

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If you are reading this you probably know that the Internet -- particularly the World-Wide Web -- is a widely-used source of medical information for the lay public (patients and their families) as well as a great resource for medical professionals. However, there's a problem: there is no guarantee that the information you find on the Internet is accurate, much less useful.

There are many reasons for this.

The Dangers of Medical Misinformation

Can bad Web pages hurt someone?

Unfortunately, since the Internet is in essence an anarchy, there is no guarantee -- and no way to guarantee -- that the information you find on the Web is accurate. For some things, this isn't a problem: knitting instructions are most likely to be used by people who can easily detect errors, and the exact wording of the Monty Python Spam sketch is only of interest to us truly obsessed purists. (For you purists out there: the Green Midget Cafe did not serve lobster thermidor aux crevettes in a Provencale manner, with or without Spam. If you have doubts, look at the original Spam sketch on DVD.)

Medical information is another matter entirely -- bad information can hurt someone. An example (from Crocco, Villasis-Keever, and Jadad, Pediatrics (the journal of the American Academy of Pediatrics), vol.109 (issue 3), pages 522-523, March, 2002):

A 1-year-old boy developed nausea and vomiting, followed by diarrhea. He was seen at a local emergency room, diagnosed with an ear infection, and given antibiotics.

Two days later he still had diarrhea, and his parents took him back to the ER. They were told that he had gastroenteritis with dehydration, and were instructed to (This is not the advice I usually give in this situation: my advice, especially regarding fluids, is rather different -- and much more in keeping with generally accepted treatment for gastroenteritis and dehydration.)

When the parents brought their child home, they looked on the Web for information about diarrhea in children. They found a Web site with information "from a purported tertiary care pediatric medical center in the US" (I'm quoting the article here -- and, no, I do not know which medical center it was.) The instructions from the "purported tertiary care ... center" were to

Over the next 7 days, the parents followed this advice. The little boy continued to have diarrhea and became increasingly weak.

On day 10 they took him to his regular doctor, who immediately put him in the hospital. He was reportedly "pale, irritable, and appearing wasted" but, fortunately, his electrolyte (sodium and potassium) levels were still in the normal ranges.

He was started on Pedialyte and restarted on solid foods, and was better enough to go home in two days.

His parents, of course, were rather upset -- especially as they adamantly maintained that they followed the ER and Web instructions carefully ... and "could not understand why their child had not improved... as they had followed the recommendations carefully." They were able to show their son's doctors a printout of the Web page they had relied on, and the doctors found that, indeed, "(they) had not misinterpreted the information on the site, which did not conform to standards of care outlined in any available clinical practice guideline (for the treatment of gastroenteritis)."

The parents gave permission for their child's case to be reported. The paper's authors claim -- and I agree -- that this case may be the first published case in which a patient was harmed because of bad advice posted on the Internet.

How much bad information is out there -- and how can you tell it's bad?

So, how does a Web surfer figure out what medical advice is good and what advice is bad? Not easily, unfortunately. And there are a number of studies showing that there is a lot of bad information out there. One example was published by Pandolfini, Impicciatore, and Bonati (Pediatrics, vol. 105 (issue 1), pages e1-e8, January, 2000). The authors were trying to see if "technical" criteria which any reader could check, such as:

had any relationship to whether the information on the page was complete and/or accurate.

It didn't. Even worse, not only was there no correlation between technical completeness and completeness of information, or between technical completeness and accuracy of information, but there was also no correlation between completeness of information and accuracy of information. The subject they chose was cough in children. They looked at how complete each page they reviewed was as far as information on causes of cough, and at how accurate each page was on how to treat cough (the gold standards for accuracy were the recommendations of the AAP and the World Health Organization).

Of the 19 pages they looked at,

Only one of the 19 pages scored at the top in all three categories. It happened to be my page on coughs, colds, and runny noses. The only points the authors docked me for were

I might add that at the time the article was published in Pediatrics I received several calls from the lay press asking me to comment on the findings. I confess I was flattered by the attention. It is sad, though, that I would attract national attention merely because I was the only Webmaster reviewed in the paper who actually did everything right.

Unscientific and unsupported information

Another big -- and growing -- problem is the proliferation of Web sites devoted to alternative therapies -- which isn't all bad: some alternative therapies have been unjustly ignored by our profession. What is bad is the proliferation of Web sites that advocate things that are known to be useless or even harmful. Two examples:
Web sites that oppose routine vaccination of children against common diseases
Antivaccination Web sites have been examined in the medical literature: one report, by Wolfe, Sharp, and Lipsky, (published in the Journal of the American Medical Association, vol. 287 (issue 24), pages 3245-3248, June, 2002), describes 22 Web sites examined by the authors. They found that:

Web sites that promote unhealthy and illness-related behaviour
I am experienced at treating medically-unstable patients with eating disorders (anorexia and bulimia), and treat such patients on a referral basis.

Treating two or more eating disorder patients at once has always been difficult, because when we have two anorexics together they tend either to compete to see how much more weight they can lose, or to start swapping tips on how to avoid eating and how to continue losing weight. The Internet has made things much worse: there are numerous Web sites run by anorexics or bulimics that post advice on how to continue being anorexic or bulimic. In my opinion, that is not much different than posting instructions on how to commit suicide. I have never had one of my eating-disorder patients die, but I've certainly had some come close and I really don't need to see one succeed -- and neither do my patients, their families, or their friends.

How can we find good medical information on the Web?

It's not easy. An awful lot of Web-based medical information isn't worth the time it takes to download. The problem is sorting out the wheat from the chaff.

And you can't depend on external forces to get rid of bad medical information. Not only is regulating the Web legally difficult in most democratic countries (it's certainly unconstitutional in the United States), but it's also technically impossible. (Remember: the Internet was designed to transmit information reliably even under nuclear attack.) Suing people who harm others by posting bad information may get rid of some of the garbage, but it may also drive the good medical Webmasters off the Web (there's a reason for that disclaimer at the end of every one of my Web pages...) -- and, given the international nature of the Internet, where would one file such a suit?

There are some things you can do to lessen the chances of running into bad information.

Ask your doctor to suggest sites s/he thinks are well-written and accurate.
Most of us are happy to recommend good sites -- whether or not we wrote them ourselves (*smile*).
(Seriously, one reason why my Office on the Web exists is so that my patients and parents would have a source of information on common problems that I felt comfortable steering them to. When I first set up this site there weren't that many resources on the Web; now there are many more, but I still start parents out here because I know -- and they know, too -- that what I say here is exactly what I would tell them in person.)

Browse the medical professional organizations' Web sites.
Most of the professional-organization sites have sections written specifically for patients and families. The American Academy of Pediatrics Web site is one good example. (And, yes, I am a Fellow of the AAP -- but I was recommending their site long before I became a Fellow.) The information on the professional-organization sites has been reviewed by members of the organization for accuracy, and the sites are updated regularly. They also check the accuracy of many or most of the sites to which they link.

Browse public-health Web sites...
including
Unless you actually are into conspiracy theories, public health authorities will prove to have up-to-date information on many health-related issues. CDC in particular is one of the best and most current sources of information on infectious diseases -- both domestic and for foreign travel. (My Web pages on infections and immunizations are based largely on information from the CDC and the AAP.)

Check each Web site you read for the author's name and qualifications and the date when the page was last revised.
Although this may not assure accuracy, it helps to know who wrote the page, how old or new it is, and what qualifications the author has to say what's said there.
The Health on the Net Foundation, based in Switzerland, is dedicated to improving both the usability and the accuracy of medical information on the Internet. They have developed a code of conduct, the HONCode, to which many medical Webmasters subscribe. The foundation reviews Web sites to insure that the code of conduct is observed, and Webmasters are not allowed to use the foundation's logo unless they meet the code's requirements, which include
  • identifying the author of each page and stating his/her qualifications.
  • showing the date of last revision
  • stating that the page is not a substitute for professional care
  • revealing the source of financing for the site, including any potential conflicts of interest (like drug-company-financed sites)
  • an explicitly-stated policy on privacy for site visitors, and
  • providing an electronic means (which may be E-mail or a feedback form) for a visitor to contact the Webmaster.
(The HONCode link here is to my site's listing at the foundation; I have subscribed to the code for many years.)

Be careful out there!
The Internet is a great place to find medical information -- but you need to be careful about where you find that information. When you have doubts, your doctor is the best person to ask for advice -- after all, your doctor knows you a lot better than a Webmaster does.

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PLEASE NOTE: As with all of this Web site, I try to give general answers to common questions my patients and their parents ask me in my (real) office. If you have specific questions about your child you must ask your child's regular doctor. No doctor can give completely accurate advice about a particular child without knowing and examining that child. I will be happy to try and answer general questions about children's health, but unless your child is a regular patient of mine I cannot give you specific advice.

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Copyright © 2005, 2006, 2007 Vinay N. Reddy, M.D. All rights reserved.
Written 04/29/05; last revised 09/17/07 counter