Title:	VIRTUAL PROFILE, REAL PATIENT: IN THE DYNAMIC WORLD OF ONLINE SOCIAL NETWORKS CRITICISMS STAND STILL
Author(s):	Grazia Orizio, Peter J Schulz, Loredana Covolo, Cinzia Gasparotti, Luigi Caimi, Umberto Gelatti
ISBN:	978-972-8939-16-8
Editors:	Mário Macedo
Year:	2010
Edition:	Single
Keywords:	Internet; community networks; social support.
Type:	Full Paper
First Page:	119
Last Page:	126
Language:	English
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Paper Abstract:	Health-related online social networks arose with the “participated web”, which created virtual worlds and virtual communities. In order to analyse the existing online social networks dedicated to health issues, we performed an active search on the internet for such websites and analysed their features according to the content analysis method. The study was performed in September and October 2009. We analysed a sample of health social networks for patients, selected using the Altavista©, Bing©, Google© and Yahoo© search engines. A codebook was elaborated to investigate four areas: general information; technical characteristics and utilities; characteristics of the website and contents, both general and related to the online community. The search led to a sample of 41 social networks. 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 get in contact with the website, only five (12.2%) showed the name of the author or operating organization. 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 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 some criticalities regarding the openness and transparency of these websites, the use of personal data and privacy issues.
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