The world of e-Patients: A content analysis of online social networks focusing on diseases

Objective: As the participatory Web developed to create virtual worlds and communities, health institutions and activists discovered Web 2.0 tools, in particular the creation of health-related online social networks. To analyze the existing online social networks dedicated to health issues, we performed an active search on the Internet for such Web sites and analyzed their features according to the content analysis method. Methods: The study was performed in September and October 2009. We analyzed a sample of health social networks for patients, selected using four common search engines. A codebook was elaborated to investigate four areas: general information; technical characteristics and utilities; characteristics of the Web site and contents, both general and related to the online community. Results: The search led to a sample of 41 social networks. Twenty-three Web sites (56.1%) were dedicated to several diseases, the others to one only. Although the majority of the sample (87.8%) provided a way to contact the Web site, only five (12.2%) showed the name of the author or operating organization. Eight Web sites (19.5%) indicated one or more sponsors, and nine (22.0%) named one or more partners. It was often hard to tell whether an institution mentioned was a sponsor or a partner. Five Web sites (12.2%) enabled users to buy health-related products online. Twelve Web sites (29.3%) offered users the chance to search for doctors, and 12 (29.3%) gave therapeutic information. Two Web sites (4.9%) published aggregate statistical data about the patients registered with the social network. Conclusions: The data reveal the high heterogeneity of health-related social networks and raise interesting considerations on such controversial topics as the quality of online health information, research perspectives, interactivity, and empowerment. In particular, our findings are relevant to criticism regarding the openness and transparency of these Web sites, the use of personal data, and privacy issues.