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If you’ve been affected by cancer, the chances are you’ve googled your disease or symptoms at some point. And it’s pretty likely you’ve skimmed at least one page of the online encyclopaedia Wikipedia along the way.

Wikipedia is vast – 31,977,295 pages and counting. And it’s free. It’s no wonder that it’s often one of the first stops for people looking for medical information or that it’s the fifth most visited website in the world.

We’re extremely proud of our own online information for cancer patients. Over the course of almost 20 years we have built up an accredited, evidence-based resource for people affected by cancer.

But we’ve been thinking hard about how we help the people looking for cancer information who happen not to reach one of our many easy-to-understand pages about cancer. Do we simply ignore them or do we find ways to apply our unparalleled expertise to other areas of the web?

To us, it’s a no brainer – if people are also going to Wikipedia to find cancer information, we need to help to make this information as accurate and clear as possible.

That’s why we’re teaming up with the charity Wikimedia UK to search for a ‘Wikipedian in Residence’. We want this person to help us foster collaboration between our staff, Wikipedia, the research community and the general public – with the ultimate aim of improving the usability of Wikipedia’s cancer-related content.

A growing partnership

This is the latest step in our growing partnership with Wikipedia.

Recognising the influence of Wikipedia in online information about science and medicine, we held our first WikiAcademy in 2011, during which seasoned Wikipedia editors trained our staff in the (not so) dark arts of editing the encyclopaedia.

The day was a great success – it generated some media interest and kick-started a flurry of contributions to Wikipedia by our staff. As a result, we were pleased to be awarded Educational Institution of the Year in the 2012 Wikimedian awards.

‘Internet’ patients

But we want to do even more.

Like a handful of other online services such as Google and Facebook, Wikipedia has established itself in many of our daily lives. It’s not unusual for patients to visit their doctor armed with information they’ve gleaned from Wikipedia, and no doubt some doctors also skim the pages occasionally to bone up on a topic they’re rusty on.

As one commentator put it recently, we’re in the age of the “internet patient” and “whether we’d like to admit it or not, Wikipedia has become a central pillar of medical – and honestly most – education.”

That’s why we’re keen to inspire our own researchers and the wider scientific and medical community to take part in making Wikipedia a better resource – not just for patients, but for anyone who wants to learn more about research and medicine.

To do this, we need help. So we applied for funding from the Wellcome Trust’s public engagement team to help us recruit a Wikipedia specialist who can take our involvement up a notch.

What is a Wikipedian in Residence?

The Wellcome Trust saw the huge potential of the project and so have awarded us a grant to employ a Wikipedian in Residence for 6 months.

As far as we know, this is the first such placement in a medical research organisation. But the idea of such a post comes from the gallery, museum and library sectors (so called GLAMs), who have employed Wikipedian’s in Residence to build links with Wikipedia and help improve relevant online content.

Our own Wikipedian in Residence will be tasked with engaging the research community and cancer experts in general to help create accurate and accessible information on Wikipedia. They will:

  • Hold Wikipedia training sessions at our offices and institutes around the UK
  • Undertake research on how and why people use cancer information on Wikipedia
  • Help experts create or expand existing cancer-related content
  • Work to make our online cancer information more accessible to Wikipedia editors

Watch this space

First and foremost we’re a research organisation. But we need to make sure that the outputs of cancer research – new knowledge about how to prevent, diagnose and treat the disease – are communicated as widely as possible. This is a crucial step in the process of translating knowledge into tangible patient benefit.

We’re not kidding ourselves that we’ll change things overnight, but this project could lay the groundwork for a shift in how the UK’s scientists and science communicators use and contribute to Wikipedia.

We look forward to building closer ties with the Wikipedia community and hope this project will serve as an example for the wider medical community.

Watch this space for updates.

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jeffrey deaton January 29, 2014

I would like to know what the life span is on cirrhosis of the liver from alcohol