The quality of online health material varies greatly. User-generated social networking sites, patient fora and reputation systems are proliferating. Patient experiential information is now offered in many forms – ratings, comments, blogs, discussion forums, interactive message boards, scripted vignettes, stereotypes and short films. It is commonly used to improve knowledge about a condition or to inform decision-making.
This work package drew on WP1 and has improved our understanding of how people report using online patient experience. We know that there is often a mismatch between what people do and what they say they do: WP2 has therefore combined ethnographic observations of behaviour in online support groups, telephone interviews and three experiments to improve our understanding of how patient experience is actually used in practice. The results have beene used to refine the assessment tool (the e-health impact questionnaire) and contribute to new guidelines for the presentation of online experiential information.