Cancer Research UK Working to Improve Info on Wikipedia

Zosia Chustecka

September 01, 2014

"The medical information on Wikipedia gets accessed 5 billion times a month...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.

A recent report from the IMS Institute for Healthcare Informatics concluded that "Wikipedia is the leading single source of healthcare information for patients and healthcare professionals," and added that "nearly 50% of US physicians who go online for professional purposes use Wikipedia for information, especially on specific conditions."

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. In those cases, a volunteer Wikipedia editor would spend time at the institution getting to know its content and using the expertise in-house to write Wikipedia entries about artifacts or paintings, so that people who had visited the place could learn more about the object. But this has also opened up the content and the expertise of these institutions to everyone else in the world, including people who would never visit the place in person.

"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 with 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.

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.

A big move has been the releasing of content prepared by CRUK 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.

So far, CRUK has released more than 400 of its medical images onto Wikipedia. As well as this, the organization is also exploring whether it could make its Web copy available under the creative commons license.

At the moment, the information provided by CRUK is copyrighted, so editors cannot use it on Wikipedia. "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 would bypass this extra step, and it means that information that has been very carefully prepared can be used without modification.

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. "Here, we are focusing on people who are concerned about someone else's cancer, because we have found that its often the carers and relatives of patients who do the searching, rather than the patients themselves," Scowcroft commented. "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," he said, adding that there is a plan to eventually publish the data from this study.

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."

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.

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