Citizens’ Cooperation in the Reuse of Their Personal Data: The Case of Data Cooperatives in Healthcare

Joan Rodon Mòdol ()
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Joan Rodon Mòdol: ESADE Business School

Chapter Chapter 8 in Collaboration in the Digital Age, 2019, pp 159-185 from Springer

Abstract: Abstract The advent of big data analytics is creating new opportunities for the reuse of personal health data which are economically and socially desirable. Yet the way the reuse of personal data is organized impacts not only the types of benefits but also the way those benefits are distributed among subjects, holders and consumers of data and society in general. This paper analyses and compares three dominant approaches to organizing personal data reuse reported in the literature: healthcare system-centric, for-profit data-driven, and individual-centric. This analysis reveals a challenge of existing approaches: they do not guarantee that data subjects have a say over how their personal data is reused while at the same time ensuring that data consumers see value in reusing that data. This chapter suggest that an emergent organizational form that addresses this challenge is that of data cooperatives (DCs). DCs represent a new logic of cooperation of data subjects who voluntary pool their personal data and participate in the governance of its reuse. To illustrate the working of DCs, this chapter conducts a case study of a DC in healthcare.

Keywords: Cooperative Data (DCs); Health Care; Subject Data; Consumer Data; Personal Health Data (PHD) (search for similar items in EconPapers)
Date: 2019
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Persistent link: https://EconPapers.repec.org/RePEc:spr:prochp:978-3-319-94487-6_8

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DOI: 10.1007/978-3-319-94487-6_8

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