Over the past few years, hundreds of thousands of health and fitness apps have flooded the internet. What are the promises these apps make and what premises are they based on? Many apps promise to offer personal solutions to medical problems while also contributing to the public good. Online platforms serve as personalized data-driven services to their customers. At the same time, they allegedly serve public interests, such as medical research or health education. In doing so, health and fitness apps often employ a diffuse discourse, hinging on terms like ‘‘sharing,’’ ‘‘open,’’ and ‘‘reuse’’ when they talk about data extraction and distribution.
Through three examples (23andme, PatiensLikeMe and Parkinson mPower), our recent article in Big Data & Society "Understanding the promises and premises of online health platforms" traces how the mechanisms of datafication and commodification introduce a new dynamic in health care and health research. In this domain, datafication means that every aspect of one’s physical or mental well-being is translated into data— vital signs, objective measurements, subjective experiences, medicine intake, personal information, test results, etc. Data can be private and personal (e.g., recorded symptoms, experiences) or they can be public and collective (e.g., clinical research data, health demographics, statistics); data can be user-generated and reported automatically through devices, such as electronic heartbeat apps, or users themselves can contribute data consciously, for instance through deploying pedometers. What kinds of (user) data do platforms collect, how do they collect them, and how do they process and reuse those data?
These kind of questions are important when we try to analyse how datafied information is transformed into (monetary) value. Some platforms sell health information products to customers, sometimes in combination with advertisements; other apps are free to users in exchange for their personal data, which may be shared with paying co-patients and most important industrial partners. Virtually all platforms collaborate with such partners: high-tech firms and pharmaceutical or medical equipment companies. Some also partner with universities, government services, or a combination thereof, mixing for profit and nonprofit. A minority of health platforms is operated via government or nonprofit organizations, intent on pursuing public values and yielding public goods. The question is which business model is used for what purposes, who owns and operates the platform, and who gets to benefit from its products?
We conclude the article by connecting these individual examples to the wider implications of health apps’ data flows, governance policies, and business models. Regulatory bodies tend to focus on the (medical) safety and security of apps, but pay scarce attention to health apps’ techno-economic governance. It is important to look beyond the utilitarian regulatory scope that most governments are currently envisioning and understand the technical and social dynamics underpinning the ecosystem. Who owns user-generated health data and who gets to benefit? Whereas legislators are commonly called upon to define ontological and normative standards, their power seems weakened in the face of an emerging global ecosystem of online platforms, whose techno-economic dynamics appear to operate autonomously. Hence, it takes the concerted efforts of not only governments, but also citizens, responsible scientists, and entrepreneurs to secure the checks and balances in the organization of health care in a future platform society.
This article is part of a larger research project called The Platform Society. In this project, we critically examine how online platforms—ranging from MOOCs to health apps, and from social media to sharing economy platforms—penetrate all kinds of sectors of public life such as education, health care, journalism, and civic engagement. The project’s starting point is the question: what role do platforms play in the development and realization of key public values? Our research shows that the mutual articulation of technologies, economies, and practices produces three powerful mechanisms –datafication, commodification, and selection- that reshape how societal organizations operate and how public value is produced.
About the authors:
medewerker.uva.nl/j.f.t.m.vandijck/
Thomas Poell
