“I always vet things”: Navigating privacy and the presentation of self on health discussion boards amongst individuals with long term conditions

Background: The ethics of research into online communities is a long-debated issue, with many researchers arguing that open-access discussion groups are publically accessible data and do not require informed consent from participants for their use for research purposes. However, it has been suggested that there is a discrepancy between the perceived and actual privacy of user-generated online content by community members.
Objective: There has been very little research regarding how privacy is experienced and enacted online. The objective of this study is to address this gap by qualitatively exploring the expectations of privacy on Internet forums among individuals with long-term conditions.
Methods: Semistructured interviews were conducted with 20 participants with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 21 participants with type 1 and 2 diabetes mellitus, and were analyzed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups.
Results: The findings indicate that privacy online is a nebulous concept. Rather than individuals drawing a clear-cut distinction between what they would and would not be comfortable sharing online, it was evident that these situations were contextually dependent and related to a number of unique and individual factors.
Conclusions: Interviewees were seen to carefully manage how they presented themselves on forums, filtering and selecting the information that they shared about themselves in order to develop and maintain a particular online persona, while maintaining and preserving an acceptable level of privacy.