‘I just LOVE data’: perceptions and practices of data sharing and privacy among users of the Lioness

Abstract

High profile data breaches and the proliferation of self-tracking technologies generating bio-feedback data have raised concerns about data privacy and data sharing practices among users of these devices. However, our understanding of how self-trackers in sexual health populations, where the data may be sensitive, personal, and stigmatising, perceive data privacy and sharing is limited. This study combined industry consultation with a survey of users of the world’s first biofeedback smart vibrator, the Lioness, that enables users to monitor and analyse their sexual response intensity and orgasm duration over time. We found users of the Lioness are motivated to self-track by both individual and altruistic goals: to learn more about their bodies, and to contribute to research that leads to better sexual health outcomes. Perceptions of data privacy and data sharing were shaped by an eagerness to collaborate with sexual health researchers to challenge traditional male-centric perspectives in biomedical research on women’s sexual health, where gender plays a crucial role in defining healthcare systems and outcomes. This study extends our understanding of the non-digital aspects of self-tracking by emphasising the role of gender and inclusive healthcare advocacy in shaping perceptions of data privacy and sharing within sexual health populations.