Online information needs of cancer patients and their organizations

Increasingly patients, relatives and carers are accessing health information via the internet. However, the health profession and people affected by cancer are becoming concerned with the quality of that information. A European survey was conducted under the auspices of the FP7 European Commission funded Eurocancercoms project during the period September 2010–March 2011. Its aim was to assess current online information needs of people with cancer particularly those who seek information using online social media technologies and the internet more broadly. A literature review was undertaken to gain a greater understanding of health seeking behaviour regarding cancer patients’ information needs and patient preferences for accessing different formats and media. This was used to inform the design and validation of online pan-European, multi-lingual questionnaires distributed via patient organizations and via specific Eurocancercoms partner organizations. This paper presents the results of this survey and suggests recommendations to be incorporated into the design of the online platform, ecancerHub, one of the intended outcomes of the Eurocancercoms project following this research. People want a wide variety of easy to find, easy to understand accurate information about cancer and how it is likely to impact on their everyday lives and on those close to them. They differ in the amount and detail of the information they would like and on their ability to identify quality information and understand it sufficiently to base their health-care decisions on. The majority of respondents raised the issue of quality of information and many requested recommendations of websites by the people who usually influence them most, the health professionals involved in their care.