Jeana Frost*, VU University Amsterdam, Amsterdam, Netherlands Ivar Vermeulen, VU University Amsterdam, Amsterdam, Netherlands Nienke Beekers, Kanker.nl, Amsterdam, Netherlands Track: Research Presentation Topic: Building virtual communities and social networking applications for patients and consumers Presentation Type: Oral presentation Submission Type: Single Presentation Building: Mermaid Room: Room 1 - Newgate Date: 2013-09-23 10:30 AM – 11:15 AM Last modified: 2013-09-25

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Background: Active sharing in online cancer communities benefits patients. However, many patients refrain from active information sharing because of privacy concerns. Research on privacy emphasizes data security and confidentiality and focuses on electronic medical records. Consequently, privacy concerns around information sharing in online communities remain poorly understood.
Objective: We argue that patients think about the costs and benefits of online information sharing, weighing the privacy costs of losing anonymity against the benefits of participation when deciding whether to share certain types of information. Specifically, (1) patients prefer sharing clinical information relevant to their health over daily life and identifying information that potentially compromises anonymity, and (2) younger, healthier, and female patients are less willing to share information due to the perceived higher privacy costs.
Methods: 115 patients reported sharing intentions for 15 different types of information, expected community utility, and privacy concerns.
Results: Factor analysis on the 15 information types revealed three factors coinciding with three proposed categories: clinical, daily life, and identifying information. As expected, a within-subject ANOVA showed a strong preference for sharing clinical information over daily life information and identifying information (F(1, 114)=135.59, P=.001, η2=.93). Also, adverse online privacy experiences, age, and health status negatively affected information sharing intentions. Female patients shared information less easily.
Conclusions: Respondents have differential preferences for information sharing depending on dispositional and situational cues. Patients will share details of medical experience more than daily life or identifying information. The results suggest the need to focus on anonymity rather than privacy in online communities.