The quality of online health material varies greatly. User-generated social networking sites, patient forums 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. We know that the services available for people differs between conditions and that people respond to and use online PEx in very different ways. We also know that there is often a mismatch between what people do, and what they say they do, making this a very challenging area for academic study. Given the diverse range of PEx online and the variety of experiential information sharing practices, in this work package we decided to focus specifically on the sharing of PEx in relation to Multiple Sclerosis (MS). Building on the conceptual literature review (briefing paper 2) and secondary analysis (briefing paper 3), the aim of this work package was to explore how PEx is constructed and exchanged in online MS-related support groups; and the ways people affected by MS (patients, family members and friends) respond to and interpret PEx-related information in these settings. We used a combination of different methods, including: online ethnographic observations; targeted content analyses of forums and YouTube videos; telephone and face-to-face interviews with users and people working in relation to the provision of experiential information on the internet, such as web developers and forum moderators. During the course of the research we developed a specific interest in how PEx is sought and shared in relation to controversial theories and treatments.
This work was conducted by John Powell and Fadhila Mazanderani then at the University of Warwick (now at the University of Oxford and University of Edinburgh respectively).
John Powell and Fadhila Mazanderani
Social media technologies provide patients with novel opportunities for advocating for particular treatments; generating alternative forms of ‘evidence’ built on a hybrid of personal experience and medical knowledge.