Being (In)Visible: Privacy, Transparency, and Disclosure in the Self-Management of Bipolar Disorder.

ABSTRACT

Research in personal informatics (PI) calls for systems to support social forms of tracking, raising questions about how privacy can and should support intentionally sharing sensitive health information. We focus on the case of personal data related to the self-tracking of bipolar disorder (BD) in order to explore the ways in which disclosure activities intersect with other privacy experiences. While research in HCI often discusses privacy as a disclosure activity, this does not reflect the ways in which privacy can be passively experienced. In this paper we broaden conceptions of privacy by defining transparency experiences and contributing factors in contrast to disclosure activities and preferences. Next, we ground this theoretical move in empirical analysis of personal narratives shared by people managing BD. We discuss the resulting emergent model of transparency in terms of implications for the design of socially-enabled PI systems. CAUTION This paper contains references to experiences of mental illness, including self-harm, depression, suicidal ideation, etc.