Online information as a decision making aid for cancer patients: recommendations from the Eurocancercoms project

A pan-European survey was conducted under the auspices of the FP7 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 online cancer information provision across Europe. In this paper we describe the methodology and main findings of the Tenovus survey, and draw some recommendations on the use of online information as a decision making aid for cancer patients and their families, namely: (1) transparency and accountability of the sources of information presented online; (2) accreditation of information by different recognised forms of authority and expertise, i.e. both by health-care professional and by patients/public members belonging to patient advocacy groups; (3) scaling up of information: we envisage a 3-tiered system that would enable patients to access different levels of complexity and volume of information from summary to detailed; (4) embedding of custom search tools and interactive search technologies to allow users to define requirements tailored on their needs and be context-driven; (5) communication across discipline boundaries, as patients' and doctors' online communities have very little or no contact among one another. These recommendations were applied for building the online platform EcancerHub, also under the auspices of the Eurocancercoms project, which by bringing together the different cancer communities seeks to break down traditional information boundaries, and through the interactions produce a surplus knowledge that could aid patients in difficult decision making times.