Exploring Users’ Perspectives of Mobile Health Privacy and Autonomy

The increased use of mobile health (mHealth) applications and the corresponding exchange of sensitive data has underscored privacy concerns. Privacy notices are often unengaging or incomprehensible, leading to questions of informed consent and trust. While studies have focused on providing solutions aimed to simplify privacy language and reduce cognitive burden, often overlooked are the behavioral aspects of individual attitudes, norms, and perceived control that lead to dynamic intentions for engagement. In this paper, we use existing behavior models as a lens to understand users’ privacy experiences, behaviors, and perspectives toward mHealth data privacy policies. In 15 semi-structured interviews with adult users of mHealth applications, participants encountered persistent challenges when engaging and articulating the value of privacy. Participants do not understand how privacy notices are designed, which leads to superficial awareness and control that does not actually support their perceptions of autonomy and trust in mHealth. As a result, users felt sub-optimal autonomy when engaging in privacy interactions. We discuss design considerations for autonomy-supporting privacy notices that may help users feel a greater sense of agency when interacting with mHealth applications.