, Volume 14, Issue 2, pp 205–227 | Cite as

Digital orphans: Data closure and openness in patient-powered networks

  • Niccolò TempiniEmail author
  • Lorenzo Del Savio
Original Article


In this paper, we discuss an issue linked to data-sharing regimes in patient-powered, social-media-based networks, namely that most of the data that patient users share are not used to research scientific issues or the patient voice. This is not a trivial issue, as participation in these networks is linked to openness in data sharing, which would benefit fellow patients and contributes to the public good more generally. Patient-powered research networks are often framed as disrupting research agendas and the industry. However, when data that patients share are not accessible for research, their epistemic potential is denied. The problem is linked to the business models of the organisations managing these networks: models centred on controlling patient data tend to close networks with regard to data use. The constraint on research is at odds with the ideals of a sharing, open and supportive epistemic community that networks’ own narratives evoke. This kind of failure can create peculiar scenarios, such as the emergence of the ‘digital orphans’ of Internet research. By pointing out the issue of data use, this paper informs the discussion about the capacity of patient-powered networks to support research participation and the patient voice.


Patient-powered Orphan diseases Social media Data openness Patient participation Participatory research 



We are indebted to the anonymous reviewers and the editor, who with their supportive and constructive comments helped us to better clarify and highlight the argument of the article. We would like to also thank friends and colleagues who have offered valuable comments and suggestions on earlier drafts of this paper. We would like to especially thank Barbara Prainsack, Sabina Leonelli, Alena Buyx, and David Teira. This research is funded by the European Research Council (ERC) under the European Union’s Seventh Framework Programme (FP7/2007–2013)/ERC Grant Agreement Number 335925, and the German Federal Ministry of Education and Research (Grant Number 01GP1311).

Compliance with Ethical Standards

Ethical Approval

This manuscript puts forward an argument, general in kind, about patient-powered research networks. It mostly draws from publicly available information and sources. The data collection did not directly involve (patient) human subject data. Part of the data collection was conducted as part of an organisational ethnography, reviewed for ethics by the Ph.D. ethics approval committee at the London School of Economics and Political Science.


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© Macmillan Publishers Ltd., part of Springer Nature 2018

Authors and Affiliations

  1. 1.Egenis, Department of Sociology, Philosophy and AnthropologyUniversity of ExeterExeterUK
  2. 2.Christian-Albrechts-Universität zu KielKielGermany

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