The challenge of democratic patient representation

Increasingly, patient organizations (POs) play a role in health policy making. Their involvement is expected to contribute to the democratization of decision making. It is therefore important to study this contribution. Scholars hardly draw on representation theory for this. Yet exploring POs as a case of representation is crucial to better understand how POs add to democratizing health policy. Our study departs from the assumption that POs contribute to the democratization of health policy in case they perform democratic representation. We studied the representation work of 33 POs covering rare diseases in Austria, Germany and the Netherlands by conducting a thematic analysis of document and interview data collected in 2016. The results show that POs work on turning their representative efforts into democratic representation by applying different mechanisms of authorization and accountability. Yet because of difficulties that come along with these mechanisms, POs differ regarding their contribution to democratizing health policy. Our findings further suggest that not all means of authorization and accountability work out in representation practice as hoped for in representation theory. We therefore recommend policy makers to pay attention to what means of authorization and accountability POs use for their representation work.

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