The World of e-Patients: A Content Analysis of Online Social Networks Focusing on Diseases

Published in Telemedicine and e-Health (Volume 16; Issue 10; pages 1060-1066), this article analyses the existing online social networks dedicated to health issues. Performed in September and October 2009, this study involved analysing a sample of health social networks for patients, selected using 4 common search engines. A codebook was elaborated to investigate the following areas: general information; technical characteristics and utilities; and characteristics of the website and its contents, both general and related to the online community.

The search led to a sample of 41 social networks. Selected results include:

• Twenty-three websites (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 website, only 5 (12.2%) showed the name of the author or operating organisation.
• Eight websites (19.5%) indicated one or more sponsors, and 9 (22.0%) named one or more partners. "It was often hard to tell whether an institution mentioned was a sponsor or a partner."
• Five websites (12.2%) enabled users to buy health-related products online.
• Twelve websites (29.3%) offered users the chance to search for doctors, and 12 (29.3%) gave therapeutic information.
• Two websites (4.9%) published aggregate statistical data about the patients registered with the social network.

The authors conclude that "[t]he 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."

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