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

要旨

Research in personal informatics (PI) calls for systems to sup- port 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 of- ten 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 emer- gent 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.

キーワード
privacy
personal informatics
serious mental illness
bipolar disorder
著者
Justin Petelka
University of Washington, Seattle, WA, USA
Lucy Van Kleunen
University of Colorado Boulder, Boulder, CO, USA
Liam Albright
University of Washington, Seattle, WA, USA
Elizabeth Murnane
Stanford University, Stanford, CA, USA
Stephen Voida
University of Colorado Boulder, Boulder, CO, USA
Jaime Snyder
University of Washington, Seattle, WA, USA
DOI

10.1145/3313831.3376573

論文URL

https://doi.org/10.1145/3313831.3376573

会議: CHI 2020

The ACM CHI Conference on Human Factors in Computing Systems (https://chi2020.acm.org/)

セッション: Understanding & supporting mental health

Paper session
314 LANA'I
5 件の発表
2020-04-28 01:00:00
2020-04-28 02:15:00
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