Talking about your health to strangers: understanding the use of online social networks by patients

Abstract

Abstract The internet has become a participatory place where everyone can contribute and interact with others. In health in particular, social media have changed traditional patient–physician relationships. Patients are organising themselves in groups, sharing observations and helping each other, although there is still little evidence of the effectiveness of these online communities on people's health. To understand why and how people use health-related sites, we studied these sites and identified three dimensions characterising most of them: informational/supportive; general/focused; and new relationships/existing ones. We conducted an online survey about the use of health-related social networking (SN) sites and learnt that, consistent with previous research, most patients were seeking information about their medical condition online, while, at the same time, still interacting with health professionals to talk about sensitive information and complex issues. We also found that, while people's natural social network played an important role for emotional support, sometimes, people chose to not involve their family, but instead interact with peers online because of their perceived support and ability to understand someone's experience, and also to maintain a comfortable emotional distance. Finally, our results show that people using general SN sites do not necessarily use health-related sites and vice versa. Keywords: Social supportOnline social networkHealth and wellbeing Acknowledgements We want to thank Melody Wang for helping us conduct this study, and all the people who participated in it. Notes 1. It is worth noting that some of the health communities that are referred to in this section have been around for a long time and pre-date the Web 2.0 changes. This is, for example, the case of MedHelp which was created in 1994. Although the site has evolved over time, the initial idea that consisted in answering Patients' questions about their conditions was already there. 2. Launched in June 2008, this site closed down due to lack of funding in May 2009. 3. Dogster (http://www.dogster.com) is a community designed for dog lovers. A sister site for Cats lovers exists as well (http://www.Catster.com). 4. BodySpace has been designed to provide body builders with motivational support for their training regimes. See Ploderer et al. (Citation2008) for an analysis of this community. 5. Divorce360 provides help and advice for those considering divorce, divorcing or who are divorced.