Selling Sickness 2013

“meet “prosumption”

When you post something on FB, you are both a producer and a consumer. This is the heart of the notion of “prosumption,” a term introduced to me (LT) by Deborah Lupton, the Australian sociologist, in a recent paper on “The Commodification of Patient Opinion” although the term may go back to Alvin Toffler, the legendary futurist of the 1980s. User-generated content is central to much social media in the Web 2.0 era as people seek and share information and support.

The upsides (beyond speed and simplicity) are bigger networks and a greater likelihood of connecting with people and ideas that could be personally useful. This is very powerful and it is rare to find the internet savvy person in 2013 who hasn’t chatted, posted, blogged, or searched on the web out of personal need.

The downsides are that the information may be unreliable, and that data gathered by user activities can be commoditized. Lupton writes especially about how the information aggregated from large popular patient support sites like “PatientsLikeMe” or “HealthUnlocked” or “Treato”  is sold to pharmacutical and insurance companies. They, in turn, through banner ads or program offers, market back to those very contributers.

The experience of patients/citizen/consumers, is “expropriated in the interests of profit,” to use Lupton’s phrase, without of course, their knowledge or consent. Feeling part of a community and appreciating the opportunity to express themselves, patients freely share personal information only to have it used for profit-oriented corporate purposes. Surveillance of this new derivative industry is greatly needed.

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