The genie out of the bottle? Data valuation and circulation challenges for participatory research

Abstract

In this talk, I will build from my ongoing work on the social media-based health research network PatientsLikeMe, and ongoing work developed in collaboration with David Teira (UNED), to reflect on some challenges I observed in my study of the platform. I am going to reflect on this case through the combined use of the concepts of valuation and circulation. This, to be able to show the way in which, in the network, the data circulate through a multiplicity of valuation acts by different actors; and how heterogeneous valuations put data in circulation in ways that are difficult to predict and can create conflict, not only about what the evidence is, but also who should mobilize it. Enabling yet controlling valuation and circulation is a key problem of governance for distributed, participatory data infrastructures. Working with these concepts in combination can help us understand both the peculiar social convergences that these networks achieve, and the risks they run to create conflict. 

Part of the InSIS Seminar Series Hilary Term 2018

Presented by Niccolò Tempini

Niccolò Tempini is a Research Fellow in Egenis, University of Exeter. He has been researching the organization of medical research through patient-centred social media networks and other digital infrastructures. In his work he has been concerned with understanding the specific forms of knowledge coproduction and collaboration that such projects make possible in terms of convergences and divergences of different forms of value creation.

n.tempini@exeter.ac.uk

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