This introduction to the special issue on data and agency argues that datafication should not only be understood as the process of collecting and analysing data about Internet users, but also as feeding such data back to users, enabling them to orient themselves in the world. It is important that debates about data power recognise that data is also generated, collected and analysed by alternative actors, enhancing rather than undermining the agency of the public. Developing this argument, we first make (...) clear why and how the question of agency should be central to our engagement with data. Subsequently, we discuss how this question has been operationalized in the five contributions to this special issue, which empirically open up the study of alternative forms of datafication. Building on these contributions, we conclude that as data acquire new power, it is vital to explore the space for citizen agency in relation to data structures and to examine the practices of data work, as well as the people involved in these practices. (shrink)

This article investigates the claims and complexities involved in the platform-based economics of health and fitness apps. We examine a double-edged logic inscribed in these platforms, promising to offer personal solutions to medical problems while also contributing to the public good. On the one hand, online platforms serve as personalized data-driven services to their customers. On the other hand, they allegedly serve public interests, such as medical research or health education. In doing so, many apps employ a diffuse discourse, hinging (...) on terms like “sharing,” “open,” and “reuse” when they talk about data extraction and distribution. The analytical approach we adopt in this article is situated at the nexus of science and technology studies, political economy, and the sociology of health and illness. The analysis concentrates on two aspects: datafication and commodification. We apply these analytical categories to three specific platforms: 23andMe, PatientsLikeMe, and Parkinson mPower. The last section will connect these individual examples to the wider implications of health apps’ data flows, governance policies, and business models. Regulatory bodies commonly focus on the safety and security of apps, but pay scarce attention to health apps’ techno-economic governance. Who owns user-generated health data and who gets to benefit? We argue that it is important to reflect on the societal implications of health data markets. Governments have the duty to provide conceptual clarity in the grand narrative of transforming health care and health research. (shrink)