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

Petelka, Justin; Kleunen, Lucy Van; Albright, Liam; Murnane, Elizabeth L.; Voida, Stephen; Snyder, Jaime

doi:10.1145/3313831.3376573

Cited by 19 publications

(7 citation statements)

References 66 publications

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“…A related, broad feld of research are users' privacy perceptions and sharing behavior of health data [9,25,36,43,48,49]. A study investigating individuals' views of sharing sensor data [43] revealed that users were more comfortable sharing activity data such as sleep, mood, and physical activity as opposed to communication logs, location, and social activity.…”

Section: Sharing Of Health Informationmentioning

confidence: 99%

“…Relevant factors for non-disclosure of HIV health information in the context of sex-social apps were stigmatization and the fear for discrimination and disadvantages [49]. People using at-home DNA testing feared surveillance by the government, saw the misuse of a third party as potential risk of sharing health DNA data and expressed the desire for transparency and some level of control over their health DNA data.…”

Section: Sharing Of Health Informationmentioning

confidence: 99%

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Apps Against the Spread: Privacy Implications and User Acceptance of COVID-19-Related Smartphone Apps on Three Continents

Utz

Becker

Schnitzler

et al. 2021

Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems

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The COVID-19 pandemic has fueled the development of smartphone applications to assist disease management. Many "corona apps" require widespread adoption to be efective, which has sparked public debates about the privacy, security, and societal implications of government-backed health applications. We conducted a representative online study in Germany (n = 1003), the US (n = 1003), and China (n = 1019) to investigate user acceptance of corona apps, using a vignette design based on the contextual integrity framework. We explored apps for contact tracing, symptom checks, quarantine enforcement, health certifcates, and mere information. Our results provide insights into data processing practices that foster adoption and reveal signifcant diferences between countries, with user acceptance being highest in China and lowest in the US. Chinese participants prefer the collection of personalized data, while German and US participants favor anonymity. Across countries, contact tracing is viewed more positively than quarantine enforcement, and technical malfunctions negatively impact user acceptance. CCS CONCEPTS• Security and privacy → Social aspects of security and privacy; Domain-specifc security and privacy architectures; • Humancentered computing → Empirical studies in HCI .

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Section: Sharing Of Health Informationmentioning

confidence: 99%

Section: Sharing Of Health Informationmentioning

confidence: 99%

Apps Against the Spread: Privacy Implications and User Acceptance of COVID-19-Related Smartphone Apps on Three Continents

Utz

Becker

Schnitzler

et al. 2021

Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems

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“…This need is relevant for areas beyond tracking physical activity. Petelka et al [54] showed a similar gap in tracking for managing mental illness. Further, we observed that Arabic Egyptian users exhibited a higher acceptance of additional effort for customising their tracker experience for social reasons or as a conversation starter.…”

Section: How Non-weird Users Track Their Fitness and How We Can Use That For A Better Understanding Of Personal Informaticsmentioning

confidence: 93%

‘I Don’t Need a Goal’: Attitudes and Practices in Fitness Tracking beyond WEIRD User Groups

Niess

Woźniak

Abdelrahman

et al. 2021

Proceedings of the 23rd International Conference on Mobile Human-Computer Interaction

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Fitness trackers have the potential for fostering sustained change and increasing well-being. However, the research community is yet to understand what design features and values need to be embodied in a fitness tracker for long-term engagement. While past work mainly focused on WEIRD (Western, Educated, Industrialised, Rich, Democratic) fitness trackers usersin North America and Western Europe, this paper investigates another perspective on fitness tracking. We conducted interviews with N = 37 fitness tracker users in the US, Europe and Egypt to identify the similarities and differences in attitudes and practices in fitness tracking. We found that fitness tracking involved a deeper social context in Egyptian communities and our findings suggest that Arabic users focused on physiological measurement, while non-Arab Western users appear to bewere more interested in goal achievement. We contribute design dimensions that can help build more inclusive tracker experiences. Our work highlights how future fitness trackers should support a customisable spectrum of design values to offer engaging experiences to a diverse and global audience.

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“…The fear of a data breach is related to the potential damage to one's reputation and how others may react [111,121]. By selecting which aspects of their lives to disclose, people can also control the image others have of themselves [77,113].…”

Section: Privacymentioning

confidence: 99%

“…Such observation has implications for the use of behavioural monitoring for research repositories because if they intend to accommodate this pluralism of experiences, they need to allow participants to choose which data types are to be stored. Currently, consent forms follow an 'all or nothing' approach: participants who join a study are expected to share all the data required [116]; however, it can be difficult for some to disclose some parts of their life [113]. Participants in our interviews would like to stop tracking in some situations and select the level of detail visible to others, suggestions which were mentioned by older people (above 70) as well [106].…”

Section: Allow Personalised and Flexible Privacy Choicesmentioning

confidence: 99%

Futures for Health Research Data Platforms From the Participants’ Perspectives

Vilaza

Maharjan

Coyle

et al. 2020

Proceedings of the 11th Nordic Conference on Human-Computer Interaction: Shaping Experiences, Shaping Society

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In clinical cohort studies, researchers analyse the life history of population groups to understand the evolution of diseases. Health research data platforms came to facilitate such studies as they allow multiple projects to share access to cohorts' non-identifiable health information. Some latest initiatives are also starting to include mobile-generated data in their research programmes. Although seemly beneficial, it is not yet clear how potential participants feel about contributing to the new platforms: there is a need to investigate potential factors related to the acceptance in this specific context. In this paper, previous works from related contexts were brought together and, along with a qualitative study, composed a participant-centred perspective of enablers and barriers for contribution. We found that there is an apparent misalignment between current implementations and participants' preferences, leading us to propose design guidelines for future developments which can make participation more ethical and engaging.

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

Cited by 19 publications

References 66 publications

Apps Against the Spread: Privacy Implications and User Acceptance of COVID-19-Related Smartphone Apps on Three Continents

Apps Against the Spread: Privacy Implications and User Acceptance of COVID-19-Related Smartphone Apps on Three Continents

‘I Don’t Need a Goal’: Attitudes and Practices in Fitness Tracking beyond WEIRD User Groups

Futures for Health Research Data Platforms From the Participants’ Perspectives

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