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

机译：患者意见的商品化：大数据时代的数字患者体验经济

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摘要

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.
机译：作为数字健康现象的一部分，近年来已经建立了许多交互式数字媒体平台，以唤起人们对疾病和医疗保健的体验。这些平台的主要功能是提供论坛，患者和护理人员可以在此与他人分享经验，受益于其他用户的支持和知识，并为大型汇总数据档案做出贡献，作为开发更好的医疗方法和服务以及进行医学研究的一部分。但是，对于这些平台的用户而言，并非总是很容易看出来，因为许多平台的所有者对其提供的数据的商业用途正在日益增长。本文研究了这种现象，我称之为“数字患者体验经济”。讨论了这种经济的方面，例如消费（Web 2.0技术使用所特有的内容消费和生产的结合），大数据的定价，共享的论述和道德以及情感劳动的商业化。有人认为，通过这些在线平台，患者的观点和经验可能会比以往任何时候都可以在更加多样化和可访问的论坛中表达，但同时他们也已经以新颖的方式得到利用。

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