It was the best of sources, and the worst of sources: the Internet and health information

Suppose you have a question about a new medication your doctor has prescribed to you. How do you find out more about it? You probably Google it, right? But what do you do with the list of results that come up, which is likely to include a Wikipedia page, a blog entry or two, some posts on e-patient forums, the manufacturer's website, and a few online pharmacies with FREE SHIPPING? Perhaps you skim these pages, judge their usefulness and reliability, and end up at a Wikipedia page or a knowledgeable blog entry written by the likes of Scibling Abel Pharmboy. No problem.

But now suppose it's your Internet-neophyte grandma or your 11-year-old kid doing the Googling. How are they supposed to know which pages to trust?

A common theme these days in journalism circles is how terribly inaccurate blogs, and the internet in general, are. I can't even count the number of times I've seen a professional journalist accompany the word "blog" with a facial expression reminiscent of someone forced to eat a banana slug. My knee-jerk reaction as a blogger is to protest, but I also understand where they're coming from. Technorati indexes about 133 million blogs, and although I don't have hard numbers on this, I'd guess a good percentage are spam blogs that automatically republish content from "real" blogs, or badly written blogs intended to lure readers into clicking on ads.

The problem is that to the novice reader, it can be very hard to tell the difference between a well-written blog and a badly written blog - especially if they are looking for information on a topic they don't understand, like science. From grandmas seeking info on prescription drugs to teenagers looking for background to write a report on viruses, there are a lot of people out there who may not be experienced enough to discriminate the good info from the bad. For example, I encountered this dreadful "news" article being re-Tweeted by a good faith source:

The mapping of the AIDS genome has revealed that the AIDS virus uses RNA instead of DNA. Researchers found that the shape of the RNA is like a bracelet that has charms of RNA strands. The researchers discovered this information when they took an image of the RNA building blocks and the RNA strands.(source)

What? Don't even get me started on how technically misleading this paragraph is (and how it's not remotely "news").

Wikipedia is probably a more reliable source for novices than trawling random blogs. But the problem with Wikipedia is that it's inaccessible - many, if not most, articles on science (particularly health) are missing key background information or not written in plain language. Wikipedia's article on HIV is pretty decent, but it directs readers seeking more information on the type of virus it is the the entry on lentiviruses, which opens thus:

Lentivirus (lenti-, Latin for "slow") is a genus of slow viruses of the Retroviridae family, characterized by a long incubation period. Lentiviruses can deliver a significant amount of genetic information into the DNA of the host cell, so they are one of the most efficient methods of a gene delivery vector. HIV, SIV, and FIV are all examples of lentiviruses.

Five serogroups of lentiviruses are recognized, reflecting the vertebrate hosts with which they are associated (primates, sheep and goats, horses, cats, and cattle). The primate lentiviruses are distinguished by the use of CD4 protein as receptor and the absence of dUTPase. Some groups have cross-reactive gag antigens (e.g., the ovine, caprine and feline lentiviruses). Antibodies to gag antigens in lions and other large felids indicate the existence of other viruses related to FIV and the ovine/caprine lentiviruses. Description is on taxonomic level of genus. (source)

Erp. That's both intimidating and incomprehensible to most people. The necessary information to understand it simply isn't there. I'm hardly the only person to see this problem - here's a more thorough treatment of this issue via Thomas at The Decision Tree (formerly Epidemix).

This accessibility issue is partly why the Wikimedia Foundation held an academy at NIH last summer, to encourage NIH scientists to edit Wikipedia:

"One of our goals is to increase the scientists' understanding of Wikipedia and the established practices and procedures that have evolved over the years," said Frank Shulenberg, who organized the academy as head of public outreach for the Wikimedia Foundation. "They need some instructions about what's going on and why Wikipedia culture is like it is."

I was lucky enough to attend the Academy, and the visiting Wikipedia editors were phenomenally generous with their time and energy. They were also idealistic about the possibility of improving public access to health information by leveraging the strong popularity of Wikipedia. So if you have time and expertise, consider popping over to Wikipedia and fixing up your favorite article. If you're intimidated, don't worry - the Wikipedia beginner FAQs are really helpful and will show you exactly what to do.

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If anyone wants one-on-one help with editing Wikipedia, feel free to contact me at http://enwp.org/User_talk:Nihiltres or by email at wiki dot nihiltres at gmail dot com.

If there's one caveat I would give to would-be editors, it would be to remember that people on Wikipedia can't verify your credentials, so don't rely on them: point to reliable primary or secondary sources instead of saying "look at these letters after my name". :)

By Nihiltres (not verified) on 26 Jan 2010 #permalink

Thanks, Nihiltres! I've been really impressed by the willingness to help of Wikipedia editors. Your point about credentials is well taken; the whole idea is that subject matter experts are good at finding, understanding, and explaining the relevance of the original research literature - not that they have inherent authority. But I think (hope?) Scienceblogs community members realize that experts disagree - a lot - and that appeals to "authority" rarely settle anything. :)