School of Social and Political Sciences, University of Innsbruck, Universitätsstraße 15, Innsbruck, 6020, Austria; Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, 3000, DR, the Netherlands.
Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, 3000, DR, the Netherlands.
Health Policy. 2019 Jan;123(1):109-114. doi: 10.1016/j.healthpol.2018.11.011. Epub 2018 Nov 27.
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.
越来越多的患者组织（POs）在卫生政策制定中发挥作用。预计他们的参与将有助于决策的民主化。因此，研究这种贡献非常重要。学者们几乎没有从代表性理论出发来研究这一点。然而，将 POs 作为代表性的一个案例进行探讨，对于更好地理解 POs 如何为卫生政策的民主化做出贡献至关重要。我们的研究假设 POs 通过进行民主代表性的工作为卫生政策的民主化做出贡献。我们通过对 2016 年收集的文件和访谈数据进行主题分析，研究了覆盖奥地利、德国和荷兰的 33 个罕见病患者组织的代表性工作。研究结果表明，POs 通过应用不同的授权和问责机制，努力将其代表性工作转化为民主代表性。然而，由于这些机制带来的困难，POs 在为卫生政策的民主化做出贡献方面存在差异。我们的研究结果进一步表明，在代表性实践中，并非所有的授权和问责手段都能像代表性理论所希望的那样发挥作用。因此，我们建议政策制定者关注 POs 用于代表性工作的授权和问责手段。
