Governments are increasingly inviting patient organizations (POs) to participate in healthcare policymaking. By inviting POs that claim to represent patients, representation comes into being. However, little is known about the circumstances under which governments accept POs as patient representatives. Based on the analysis of relevant legislation, this article investigates the criteria that self-help organizations (SHOs), a special type of PO, must fulfil in order to be accepted as patient representatives by governments in Austria and Germany. Thereby, it aims to contribute to the discussion on the role of governments in steering SHOs. There are different degrees of regulation (very little in Austria, more in Germany). Governments in both countries not only formulate explicit criteria for SHOs with respect to patient representation but also guide SHOs representing patients through implicit criteria for associations. We discuss the findings against concepts of responsiveness, authorization, and accountability. Our findings indicate that governmental steering is not negative per se as indicated by previous research but—depending on legislative criteria—can promote transparency and democratic quality in patient representation.

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Keywords Democratic representation, Independence, Patient organizations, Patient representation, Representative claims theory, Responsiveness, Self-help organizations
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Journal Journal of Bioethical Inquiry
Rojatz, D. (Daniela), Fischer, J. (Julia), & van de Bovenkamp, H.M. (2018). Legislating Patient Representation: A Comparison Between Austrian and German Regulations on Self-Help Organizations as Patient Representatives. Journal of Bioethical Inquiry, 1–8. doi:10.1007/s11673-018-9864-7