Understanding the promises and premises of online health platforms

Abstract

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 (the use and reuse of data) and commodification (a platform’s deployment of governance and business models). 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 (medical) 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.