Online information for cancer patients: source of learning, or burden? Recommendations from the Eurocancercoms Project.

Information is a source of learning. But unless it is organized, processed, and available to the right people in a format for decision making, it is a burden, not a benefit’. This quote, usually attributed to William Pollard, an English Clergyman of the 19th century, could indeed be adapted to the plethora of information that can be found nowadays on the internet. In particular, it could be adapted to the kind of health information patients are seeking on the internet following a cancer diagnosis, or when they turn to the web looking for a second virtual opinion or for additional information to help them in a time of difficult decision-making. But, as Pollard aptly put it, unless it has been properly processed and organised, the information can become a burden for those patients. What does it mean to be ‘properly processed and organised?’ And what are the strategies that can be put in place to be sure it is? In order to answer this question, a pan-European survey was conducted by the Welsh cancer charity Tenovus under the auspices of the FP-7 funded Eurocancercoms project during the period September 2010–March 2011. It was designed to broaden public policy understanding of patients’ specific needs when seeking online cancer information, and aimed to identify gaps in the current online cancer information provision across Europe. The results are now published on the European Journal of Cancer in a paper that I co-authored, together with five recommendations to make online information a benefit, and not a burden, for those cancer patients who are turning to the web to look for an aid in decision-making.

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