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J Am Med Inform Assoc 20:16-24 doi:10.1136/amiajnl-2012-000949
  • Focus on patient privacy

“Not all my friends need toknow”: a qualitative study of teenage patients, privacy, and social media

Open Access
  1. Khaled El Emam2,3
  1. 1Department of Informatics, University of Oslo, Oslo, Norway
  2. 2Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
  3. 3Department of Pediatrics, University of Ottawa, Ottawa, Ontario, Canada
  1. Correspondence to Dr Maja van der Velden, Department of Informatics, University of Oslo, PO Box 1080 Blindern, Oslo 0316, Norway; majava{at}ifi.uio.no

  1. Contributors MvdV designed the study, performed data analysis, and contributed to writing the paper. KEE contributed to writing the paper.

  • Received 13 March 2012
  • Accepted 28 May 2012
  • Published Online First 6 July 2012

Abstract

Background The literature describes teenagers as active users of social media, who seem to care about privacy, but who also reveal a considerable amount of personal information. There have been no studies of how they manage personal health information on social media.

Objective To understand how chronically ill teenage patients manage their privacy on social media sites.

Design A qualitative study based on a content analysis of semistructured interviews with 20 hospital patients (12–18 years).

Results Most teenage patients do not disclose their personal health information on social media, even though the study found a pervasive use of Facebook. Facebook is a place to be a “regular”, rather than a sick teenager. It is a place where teenage patients stay up-to-date about their social life—it is not seen as a place to discuss their diagnosis and treatment. The majority of teenage patients don't use social media to come into contact with others with similar conditions and they don't use the internet to find health information about their diagnosis.

Conclusions Social media play an important role in the social life of teenage patients. They enable young patients to be “regular” teenagers. Teenage patients' online privacy behavior is an expression of their need for self-definition and self-protection.

Footnotes

  • Funding This study is part of the research project Autonomy and Automation in an Information Society for All, which is funded by the Verdikt Programme of the Norwegian Research Council (project number 193172).

  • Competing interests None.

  • Ethics approval Ethics approval was provided by CHEO research ethical board.

  • Provenance and peer review Not commissioned; externally peer reviewed.

This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/3.0/ and http://creativecommons.org/licenses/by-nc/3.0/legalcode

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