Should I Be Getting Health Information From Wikipedia?

By Julie Beck
(Wikimedia Commons)

According to a recent report from the Pew Research Center, one in three Americans have, at some point, taken to the Internet to try to diagnose a medical condition (for themselves or others), and 72 percent of Internet users have looked more generally for health information online in the past year. Since Wikipedia is the sixth-largest website in the world, it comprises a good deal of the health information readily available online, but being editable by anyone means that the quality of information available isn’t always up to snuff. We are a culture of Googlers, though, and it’s unreasonable to expect someone to go to a doctor every time they have a medical question.

Through Wikiproject Medicine, some medical professionals (and other health-savvy Wikipedia editors) have taken it upon themselves to improve the quality of medical information available on the site. And, in the same spirit, the University of California, San Francisco will be offering a class this year that gives fourth-year medical students course credit in exchange for editing Wikipedia articles. I spoke with Dr. Amin Azzam, a health sciences associate clinical professor at UCSF, who will be teaching the course, about how it will be run, and the impact that Wikipedia has on public health.

What gave you the idea to offer this class?

As is often the case, good ideas come from our students. One of my students who I’d been working with for [more than] a year introduced the idea of editing Wikipedia when he was a medical student. I have to admit that at the beginning I was quite skeptical, especially because I think a lot of us in the medical profession have looked at Wikipedia rather skeptically as an inaccurate source of information. So when Mike Turken first talked with me about the idea I, like many, said “Hogwash. There’s no way Wikipedia is going to be a reliable source of information.” As we talked about it, I tried to keep an open mind to the notion that our students actually are fully capable of contributing to Wikipedia and correcting errors that exist there. So based on those discussions, he suggested, and I supported, having a week of Wikipedia-related events. We invited some speakers to come and talk about the concept of editing Wikipedia’s medical content. That’s really where I got greater exposure to what Wikipedia can be in the medical realm. So our students are leading the way in helping us understand how to evolve in this landscape. I’m thrilled to be in a position to be able to help push ideas that our students have and push innovation, so that our medical schools can be responsive to our societal charge, which is really to improve the health of all patients and train the next generation of physician leaders to do that as well.

How is the class going to be structured?

To answer that, I think it’s important to understand the general structure of fourth-year medical students’ academic year. The third and fourth years of medical school are referred to as the clerkship curriculum, and occur predominantly in the hospital and clinical settings. The final year of medical school is often very elective-based in that medical students can select what types of additional training experiences they want before they finish medical school. So a lot of the structure is month-long rotations, as they’re called; this elective is based on that structure. It will occur from mid-November to mid-December. We chose that month specifically because it’s the time of year when fourth-year medical students across the country are all interviewing for the next stage of their professional development, or their residencies, and so we wanted it to be a travel-friendly elective. Since so little of their time with me needs to be face-to-face, it seemed a logical opportunity for our students to be interviewing for residencies and concurrently doing this work—getting academic credit for editing Wikipedia—while they’re on a plane or in another city interviewing.

How are you going to measure credit? What are the main goals of the course?

This is all part of the larger education initiative at Wikipedia. I want to be clear that I’m not particularly innovative in asking my students to be editing Wikipedia. There have been something like 100 classrooms [attempting such] an assignment each semester throughout the U.S. and Canada. Ours just happens to be the first medical school course for this kind of credit.

But basically, the Wikipedia education initiative encourages faculty and educational assistants to think about [the fact that] our students are using Wikipedia anyway. Let’s not fight it. Let’s get out of this academic ivory tower. So realizing that, I thought, “Okay, let’s think about how Wikipedia deals with medical topics.” Wikipedia has this Wikiproject Medicine,  and the folks that have been involved with that long before I was around have looked the most highly-trafficked [medical] pages on Wikipedia. They defined highly-trafficked based on unique number of visitors, as well as unique number of hits. Looking at the top 80 to 100 topics, they said, “There are something close to 15,000 to 20,000 hits per day on some of these topics; why don’t we tackle the most-trafficked topics first, to try to improve the quality or rigor of the articles?”

In the Wikiproject Medicine volunteer community, there is a rating scale for all the articles—and I think this may be true across all of Wikipedia. Articles start with what is called a stub of an article. As more information is added to the Wikipedia page, it moves to what’s called the start of an article, and it moves from that to a C quality article, and then a B quality article, then they skip the letter “A” and move to what is called a “good” article. The highest scale is a featured article. When you look at [the quality of the articles], the fraction of high-quality information on Wikipedia in the medicine-related topics is significantly lower than other domains of Wikipedia. I think a large part of that is because we in the medicine community have not been embracing this model of democratized information. But when you realize that this is where all the world goes for information first, I think we’re missing an opportunity. Why don’t we contribute to improving the quality of information that the public has access to, and that the public goes to? So that’s why I became passionate about this model. I started realizing that this was a much bigger way to make a much bigger impact on public health.

So the editing that your students do is going to be part of Wikiproject Medicine?

That’s right. Wikiproject Medicine has defined the Top 100 articles. And I think it behooves us to start with those articles. A different model would be to say, ‘Hey, beloved students, pick whatever thing you’re passionate about and just make it better on Wikipedia.’ But I think we have an opportunity to start big and go with the more impactful stuff. That’s not to say that other medical topics aren’t important, there’s just fewer people going to Wikipedia for them. In other words, even the easy stuff on Wikipedia hasn’t been done yet in the medicine-related topics.

Anybody who is interested in improving the quality of medicine-related topics on Wikipedia is welcome to edit. You can edit Wikipedia anonymously, or you can login and edit it with whatever pseudonym or name you want to use. For the purposes of our course, I’m going to need to be able to track our students if they’re going to get academic credit for it. So I will need to have them create pseudonyms so that when they edit, I’ll be able to see that they edited and be able to track their progress over time. But, as is the case with all the rest of Wikipedia, anyone else in the globe will be editing simultaneously, too, so other people might edit their edits and improve the articles further based on our students’ input, as well.

Or not improve them.

That’s right; that’s true. Certainly there are controversial areas in Wikipedia in which there are disagreements among individuals. I really believe that our med students are knowledgeable consumers of the lay press and of the medical literature. They’re fourth-year medical students—they’re less than six or seven months away from becoming physicians.

Do you have any numbers at all about how many people are turning to Wikipedia for health information?

This information is all going to be coming from folks from Wikipedia. Some of it comes from Dr. James Heilman, an ER doctor and Wikipedia editor who came and talked to us at UCSF last January. The vast majority of the public doesn’t go to the Internet for medical-related topics; it’s a tiny fraction of what people spend their time on the Internet doing. But when you look at the places people go for health information, it turns out that [people go to] Wikipedia for medical information more than any other website. More than the National Institutes of Health, more than WebMD, more than Mayo Clinic. It’s more than many of those combined. That’s really staggering if you think about it, and I think it speaks to the popularity of Wikipedia in contrast to other sites.

For example, schizophrenia is one of the most highly-trafficked medical-related topics [on Wikipedia]. In the month of March 2013, there were 348,026 views of the schizophrenia page on Wikipedia. That adds up to something like 4 million pageviews a year on that page. That ranks 387th in traffic on Wikipedia for the month of March 2013.

Are there any examples that come to mind of egregious falsehoods that you’ve seen on medical Wikipedia pages?

There are examples of controversy that occur on Wikipedia where you have editing wars, and people go back and forth about things. As part of the press that’s come out around this [class], I received an email last night from a physician in Switzerland. He says, “I’m often very much annoyed at the medical information related to breast cancer screening on Wikipedia. The controversy spreads and the anti-screening people control that part of Wikipedia. A more balanced view would serve millions of women.” So this is an example of a faculty member in Switzerland who also serves as a consultant for quality assurance for Swiss cancer screening and mammography screening. Although I don’t know him personally and I’m just reading his email signature, he appears to be someone who has some legitimate expertise in this domain, and he emailed me to say “What a great idea; I’d love to participate in some way. I’m happy to be an expert for your medical students as they review those pages.” I don’t know breast cancer screening well, so I can’t speak as an expert in that domain about what is true on Wikipedia, but I think that’s an example where there may not be controversy within the medical community, but there is controversy within the public at large—people’s opinions about what we should or shouldn’t be doing.

I read also that Wikiproject Medicine sends their articles to Translators Without Borders, and then they translate it into other languages. Is there a dearth of medical information online in languages other than English, or languages that are a little less common?

Yes, I can’t speak exactly to that dearth of the medical content, but if you look at the information on the Internet by language, the most predominant is obviously English. So 57 percent of the Internet is in English, then the next largest, for example, is a blanket category of “other” languages. But then if you compare that to the global population, the vast majority of the globe speaks “other” languages—57.8 percent of the population. Then I think what’s striking is when you look at Wikipedia articles by language—so, now we’re going to compare global population and Internet language to Wikipedia’s language. So, 17.7 percent of Wikipedia is English. And 46 percent is in other languages. So I’d offer that Wikipedia is more international than any other part of the Internet. That makes sense when you think about the model—it’s very much democratized; anyone can contribute, anyone can add. So we’re not limiting ourselves to some subset of the population, and that’s why Wikipedia is so popular.

If you think about ways in which we can try to provide high quality medical information to the world’s population, I don’t know if Wikipedia is the only viable way, but it’s certainly one of the most viable ways we have in the modern network. Translators Without Borders is going to take this information from the English language Wikipedia and convert it to many of the world’s other most popular languages. And they’re going to [translate it back] to English to make sure they got the translation correct.

Also, because a lot of the developing world has bypassed computers, they’ve gone straight to smartphones or cellphones for information, that’s a wonderful mechanism to get information to people. Many of the cell phone companies in the developing world will, of course, charge people for data plans. But because Wikipedia is a not-for-profit organization, they’ve been able to partner with many cell phone companies to make the Wikipedia pages available for free without data plan charges. So as those individuals in developing countries choose to look for information on their cell phones, they’re going to find it in the language of their preference for free, and with reliable information.

It’s great that the Swiss doctor emailed you and said he wants to do this as well. Your students are getting course credit for it, but normally doctors may not have as much of an incentive to edit Wikipedia pages. What would you say the importance is for doctors getting in on the editing process?

Again, credit to another physician, a doctor in Texas who runs a blog called 33charts. He was the keynote speaker at a regional medical education conference that I went to. His name is Bryan Vartabedian, and he’s a pediatric gastroenterologist at Texas Children’s Hospital at Baylor College of Medicine. In his keynote address to our conference, he said that he felt it was a moral obligation for physicians to be out there in the blogosphere or on the Internet, and he gave what I think is a very compelling example. A few years ago there was some controversy around autism and vaccinations, and some fear that there was an association between specific vaccines and their rate of autism. Now, there were a lot of people posting stuff on the Internet that turned out later to be proven wrong. And he pointed out that there’s something like 45,000 U.S. pediatricians in the American Academy of Pediatrics, and he said, if each one of those 45,000 physicians simply posted once on the Internet somewhere, then we would have ruled the airwaves about that controversy and prevented hundreds of thousands, if not many more people from getting incorrect, unreliable, and inaccurate information on the Internet about autism and vaccinations. Framed that way, I do feel we have a moral obligation, as members of the profession to be reaching out to the people we intend to serve, where they are—and they are on the Internet. We don’t need to be waiting for them to come to our offices, we should be reaching out to them.

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