Being (In)Visible: Privacy, Transparency, and Disclosure in the Self-Management of Bipolar Disorder
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.
Justin Petelka
Lucy Van Kleunen
Liam Albright
Elizabeth Murnane
Stephen Voida
Jaime Snyder
Projects in Human-Computer Interaction
- Leveraging Collaborative Filtering for Personalized Behavior Modeling: A Case Study on Depression Detection among College Students
- On the Steppe: Plain Talk Imagining Technology Used Wisely
- Using Everyday Routines for Understanding Health Behaviors
- When Screen Time Isn’t Screen Time: Tensions and Needs Between Tweens and Their Parents During Nature-based Exploration
- Falx: Synthesis-Powered Visualization Authoring
- What Makes People Join Conspiracy Communities? Role of Social Factors in Conspiracy Engagement
- Visually Encoding Personal Data for Vulnerable Populations
- Who Are You Asking?: Qualitative Methods for Involving AAC Users as Primary Research Participants
- Where Are My Parents?: Information Needs of Hospitalized Children
- Parenting with Alexa: Exploring the Introduction of Smart Speakers on Family Dynamics
- “Eavesdropping”: An Information Source for Inpatients
- Detecting Depression and Predicting its Onset Using Longitudinal Symptoms Captured by Passive Sensing: A Machine Learning Approach With Robust Feature Selection
- Mobile Assessment of Acute Effects of Marijuana on Cognitive Functioning in Young Adults: Observational Study
- Telling Stories: On Culturally Responsive Artificial Intelligence
- What Makes People Join Conspiracy Communities?: Role of Social Factors in Conspiracy Engagement
- Early adopters of a low vision head-mounted assistive technology
- Being (In)Visible: Privacy, Transparency, and Disclosure in the Self-Management of Bipolar Disorder
- Visualizing Personal Rhythms: A Critical Visual Analysis of Mental Health in Flux