Data diaries: Self-reported chronicles on online health platforms and the challenges for technology assessment

Abstract

This research article explores the ethical, social, and economic implications of online health platforms that promote participatory models of data collection and use. These platforms, often hailed as enablers for democratization of healthcare, also raise significant concerns about privacy and the commodification and exploitation of data. Based on qualitative interviews and a literature review, this study examines how such platforms influence global healthcare dynamics. While these platforms foster user empowerment, they also create environments where new forms of surveillance may emerge. This article emphasizes the importance of addressing these concerns through rigorous technology assessment, particularly in regions governed by strict data protection regulations such as the General Data Protection Regulation (GDPR) in Europe. By examining the socio-ethical challenges posed by these platforms, the study identifies ways to ensure that the benefits of participatory platforms are distributed equitably and ethically.