Cancer Research UK Working to Improve Info on Wikipedia
Medscape, 1 September 2014
linkhttp://www.medscape.com/viewarticle/830696?src=rss[/link]
"Five billion people per year look up medical information on Wikipedia...so we owe it to people to at least engage with it and try to ensure that the information is correct," said Henry Scowcroft, news and multimedia manager at Cancer Research UK (CRUK). The charity, which funds more than 4000 cancer researchers, also provides detailed information on cancer to the general public, as do many of the large cancer organizations. But recently it has taken a step further. CRUK has appointed a Wikipedian-in-residence to monitor and correct information about cancer on the Web-based encyclopedia, which has become one of the most, if not the most, widely used sources for medical information. [...] The role of a Wikipedian-in-residence at CRUK is the first of its kind in a medical organization, although this type of position has already been used with great success at museums, libraries, and art galleries. [...] "It got me to thinking that maybe we could do something similar at Cancer Research UK," Scowcroft commented in an interview with Medscape Medical News. A grant application to the Wellcome Trust resulted in funding for 6 months, and the Wikipedian-in-residence at CRUK, John Byrne, started in May. Byrne had previously been a Wikipedian-in-residence at the Royal Society and had worked at Wikipedia UK, so "his expertise is very much with Wikipedia and the etiquette of making and changing entries," Scowcroft said, "which is what we needed, as we already have the cancer expertise." "The overarching aim of the project is to build links between CRUK and Wikipedia," said Scowcroft, with training for CRUK staff and funded scientists on how to modify entries and insert accurate information into the encyclopedia. The hope is that a culture of monitoring information on Wikipedia will be established among staff and scientists during the 6-month period that will leave a legacy once the grant comes to an end.
So will CRUK assume all responsibility for the accuracy of Wikipedia's anyone-can-edit cancer articles?
Ensuring Information Is Accurate
The "nuts and bolts of the project" involves review of information already available on Wikipedia: taking a topic, checking the entries and references, sending it out for review to experts in the field, incorporating their comments, and striving to make sure that the coverage of that topic is both accurate and up to date. The Wikipedian-in-residence will focus in particular on 4 topics, which were recently highlighted by CRUK as areas of unmet medical need. They are pancreatic, esophageal, and lung cancer, and also brain tumors. Inaccuracies in particular are a focus, but also many of these entries were originally written by medical students and they contain complexities that need some simplification and explanation for general public use, Scowcroft commented. Also, these pages were often created by a number of people inserting sentences at different times, so there is often an issue with flow and readability, which also needs to be addressed, he added. Part of the stipulation from Wellcome when issuing the grant for this position was a requirement to measure what has been achieved, so there are plans for a study in which volunteers will be asked to compare the older and the modified versions of the Wikipedia entries to see if the newer version is easier to understand.
Has the Wikipedian in Residence explained to Mr Scowcroft that all the entries are constantly liable to be edited by anonymous "anyones"? Or does Wikipedia intend to lock these articles against all but CRUK-approved editors?
A big move has been the releasing of content prepared by CRUK, both words and images, through a creative commons license, which then allows anyone to reproduce it with the only proviso that the image or wording is attributed to CRUK. Prior to this, the information provided by CRUK was copyrighted, so editors who wanted to use it on Wikipedia could not cut and paste, but would have to rephrase the wording. "But we spend a lot of time making sure that our wording is robust and accurate and that it is unambiguous," Scowcroft explained, and this need for rephrasing undid all of that hard work.The release of material under the creative common license removes this extra step, and it means that information that has been very carefully prepared can now be used without modification.
How does CRUK expect to guard their robust and accurate wording in an encyclopedia that anyone can edit?
As well as wording, the CRUK has also released more than 400 images, all with the charity logo. This took a lot of work and discussing with legal and marketing teams, but it is a "big win for us," said Scowcroft. "The primary reason for doing this is to make the information on the Internet better, but there is a knock-on effect that gets our brand out there, and we get kudos and recognition," he added. Finally, there is also a research project underway in collaboration with the FARR Institute of Digital Health at University College London, which aims to find where exactly Wikipedia falls in the huge ecosystem of medical and patient information that is now available. [...] "This should be interesting, as there has been little research to date on how people use Wikipedia, how long they spend there, whether or not they find it useful, etc," [Scowcroft] said, adding that there is a plan to eventually publish the data from this study.
Yes, it should be interesting, and it would have been useful to provide a link to information about this study and its methodology. CRUK makes it clear that it does not consider Wikipedia's medical articles reliable; if a huge ecosystem of medical and patient information is already available, why would CRUK not direct people to those sites which they consider accurate and useful-- rather than to the bottomless pit of ignorance and misinformation that is Wikipedia?
Applause From America
"We applaud this new effort by our friends at CRUK. Providing accurate cancer information is one of our highest priorities," Richard Wender, MD, chief cancer control officer at the American Cancer Society (ACS) commented to Medscape Medical News. "Millions of people reach us every year and have the expectation that the information they receive will be based on the best available science and will be accurate. So our highest priority is making sure that we meet or exceed that very high standard on our own Web site and materials to justify the high level of trust we have been given," the ACS official commented. "We know that lots of other cancer information is available from lots of Internet sources, including Wikipedia. We monitor this information so we can respond when needed, including making corrections in Wikipedia when we find them."
Is the American Cancer Society vouching for the accuracy of every one of Wikipedia's cancer articles? How could they possibly do so?
The American Society of Clinical Oncology (ASCO) told Medscape Medical News that it does not currently review the accuracy of cancer information posted on non-ASCO Websites, including Wikipedia. To address the public need for accurate, trusted information about cancer, ASCO maintains a comprehensive patient information Website, Cancer.Net, featuring current oncologist-reviewed and -approved information on more than 120 different cancer types and syndromes, they added.
So the American Society of Clinical Oncology, at least, is not so misinformed as to grant its imprimatur to WikiProject Medicine. It describes the content of its own Cancer.Net site as comprehensive and current oncologist-reviewed and -approved information. Why would people be encouraged to seek online information elsewhere, especially to such a notoriously unreliable, and constantly edited and re-edited, website as Wikipedia?