The commodification of patient opinion: the digital patient experience economy in the age of big data

Abstract

As part of the digital health phenomenon, a plethora of interactive digital media platforms have been established in recent years to elicit lay people's experiences of illness and health care. The overt function of these platforms is to provide forums where patients and caregivers can share their experiences with others, benefit from the support and knowledge of other users and contribute to large aggregated data archives as part of developing better medical treatments and services and conducting medical research. However, what may not always be readily apparent to the users of these platforms are the growing commercial uses by many of the platforms' owners of the data they contribute. This article examines this phenomenon of what I term 'the digital patient experience economy'. Such aspects of this economy as prosumption (the combination of content consumption and production that is characteristic of the use of Web 2.0 technologies), the valorising of big data, the discourse and ethic of sharing and the commercialisation of affective labour are discussed. It is argued that via these online platforms patients' opinions and experiences may be expressed in more diverse and accessible forums than ever before, but simultaneously they have become exploited in novel ways.

Keywords: big data; digital media; patient-support websites; prosumption; sociology.