Tiffany, one of my friends on the Facebook site, “Chemo for Champions,” posted that comment several years ago. She had just passed the six-month anniversary of receiving a diagnosis of cholangiocarcinoma.
When she was first diagnosed, one of the first things that she did was look up her diagnosis on Wikipedia. One of the first things that she read was that “Few patients survive six months after diagnosis.”
Her primary care physician may very well have looked up cholangiocarcinoma on Wikipedia, too, since he/she had probably never seen a case before. Studies have shown that at least 47% to 70% of medical students and physicians are willing to admit that they have used Wikipedia as a source of medical information.
After I read the Wikipedia article on stomach cancer, I started searching for information on “assisted suicide.” Really, but I will tell you all about that some other time.
I recently looked up “Wikipedia” on Wikipedia. (According to Jon Stewart, “Looking up ‘Wikipedia’ on Wikipedia, you enter a wormhole;” but, fortunately, I did not find that to be the case.) Anyway, here are of some of the things that I learned: Wikipedia has nearly 35,000,000 articles in 288 languages. English Wikipedia has nearly 5,000,000 articles. Wikipedia has 18,000,000,000 page views a month and 500,000,000 unique visitors a month. As of February 2014, there were over 26,000 medical topics covered on English Wikipedia, with 178,000,000 page views a month. A Google search of nearly any health-related topic will return Wikipedia on its first page of results, often as the very top result.
As physicians, we are, as much as anything else, in the expert-knowledge business. How can we be expected to embrace an “encyclopedia that anybody can edit”?
A recent study, asked medical students and physicians to review 10 Wikipedia articles, and the reviewers found errors in nine of them; however, the methodology has been disputed, and pretty much all other studies have found a much higher level of accuracy.
So, what can we do? There are three possibilities. The first, we might just tell patients not to look up health topics on Wikipedia. That is not a good strategy. That approach would probably be about as successful as giving patients a mimeographed diet and telling them to lose weight.
The second strategy is to refer patients to more authoritative references, such as ASCO’s Cancer.Net. A favorite source lately is cancer.gov/types, where a visitor can look at both the “patient” and the “provider” sections, depending on how much detail a personal wants. Suggesting reliable references is almost always a good idea. Unfortunately, many patients will have visited Wikipedia even before you meet them. In addition, many of their friends and relatives, and even casual acquaintances, will also have visited Wikipedia and started interacting with our patient on the basis of what they read there.
And the third possibility? Edit Wikipedia yourself or get someone else to do it for you. It turns out not to be as hard as I had feared. There is a new “Visual Editor” system that works like a word processor, and which is much easier to use than its HTML-like predecessor. I have started editing recently, and I am 64 years old and have chemobrain. It should be even easier for you.
There are about 30,000 active editors, also known as “Wikipedians.” Wikipedia says in its instructions for editors—“Be bold.” There are a lot of safeguards built into the resource; so, you do not need to worry that you will “break something.” Every article has people who have expressed an interest in it and who get informed of any changes. I am now following changes in several articles, including those discussed here. There are special procedures for ensuring accuracy for medical articles.
In addition, Wikipedia has its articles graded for quality by interested people (grades are: featured, good article, B, B/C, C, and just started). Fewer than one article in 1,000 receive a grade of “featured.” “A featured article exemplifies our very best work and is distinguished by professional standards of writing, presentation, and sourcing.”
There are a lot of physician Wikipedians who provide de facto quality control. The University of California, San Francisco, has started a course in which medical students edit Wikipedia articles for credit, and the huge Cancer Research UK organization has hired a full-time Wikipedian to improve the accuracy of cancer related articles.
ASCO should do that, too!
The bad news is that when I reviewed the list of the 5,000 Wikipedia most commonly visited articles for 2014, I found 29 articles with “cancer” in their title. Of these, three were graded as “featured;” 11 were graded as “B”; 2 as B/C, 9, as C; and 4 as newly started. The stomach cancer article is a “B.”
The good news is that since I have started monitoring it, the “cholangiocarcinoma” article has been improved to the point that it is now a “featured” article.
The even better news is that my friend Tiffany Snead Schwantes (who gave me permission to use her name) is still alive and well four years after diagnosis and two years after getting a liver transplant. Her occupation is listed on Facebook as “CEO of Kicking Cancer’s Butt.”
So, take that Wikipedia!