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Federative patient organizations in a decentralized health-care system: A challenge for representation?

Over the last two decades, the inclusion of patient voices and public values in the field of health care through deliberation has become increasingly emphasized, by patients as well as policy-makers. This is achieved not only through individual patient participation but also through patient interest organizations. Geographical representation within national interest organizations is especially important in a decentralized, multilevel policy field such as Swedish health care, allowing representation from all regions to be present in national advocacy. Using Pitkin’s conceptualization of political representation, this study aims to characterize the shaping of representation among Swedish federative patient organizations, in a time of professionalization and centralization of civil society. The results show that patient organization representation has functioning mechanisms for all studied aspects of representation; however, the nature of the substantive representation seems to contain a challenge from a democratic perspective. This leads us to a discussion about management, rooted in democratic ideals but simultaneously strongly characterized by more managerial ideals, and the contradiction of democracy and actionable management.