The evil side of sharing personal health information online

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O'Connor, Yvonne
Rowan, Wendy
Lynch, Laura
Heavin, Ciara
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Association for Information Systems (AIS)
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When joining a social network users are typically asked to register and supply their personal/private information. As part of the registration process, users must confirm that they have read the terms and conditions of site use, as well as the privacy policy for that particular social network. Do people actually read these documents, and do they really understand what they are consenting to? When it comes to sharing personal health conditions with others online, it is worth considering who will have access to this valuable, sensitive data and how it will be used in the future. This research aims to improve the form and accessibility of contractual information presented to users of Health Social Networks (HSNs), by looking at alternative ways to engage and communicate these details on registration. Taking a mixed methods approach, this research observes registration behaviours and questions users on their engagement with eConsent through HSNs. Our aim is to elucidate the challenges, risks and potential dangers associated with sharing personal health information (PHI) using HSNs. This research proposes a list of guidelines to better support userâ s decision making needs when choosing to register and providing personal health information to HSNs.
Health social networks (HSNs) , Consent , Privacy , eConsent , Personal health infrmation , Data privacy , Data protection , Online privacy , Digital informed consent , Health information
O' Connor, Y., Rowan, W., Lynch, L., and Heavin, C. (2017) ‘The evil side of sharing personal health information online’, AMCIS 2017: 23rd Americas Conference on Information Systems, Boston, United States, 10 -12 August. Available online:
© 2017 by Association for Information Systems (AIS).