Paper by Lupton, Deborah, from the Sydney Unversity’s Department of Sociology and Social Policy . Abstract: “As part of the digital health phenomenon, a plethora of interactive digital platforms have been established in recent years to elicit lay people’s experiences of illness and healthcare. The function of these platforms, as expressed on the main pages of their websites, is to provide the tools and forums whereby patients and caregivers, and in some cases medical practitioners, can share their experiences with others, benefit from the support and knowledge of other contributors 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 archives of the data they contribute. This article examines this phenomenon of what I term ‘the digital patient experience economy’. In so doing I discuss such aspects as prosumption, the phenomena of big data and metric assemblages, the discourse and ethic of sharing and the commercialisation of affective labour via such platforms. I argue 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.”
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