Rojatz Daniela, Fischer Julia, Van de Bovenkamp Hester
Gesundheit Österreich GmbH, Austrian Public Health Institute, Stubenring 6, 1010, Vienna, Austria.
Institute of Political Science, University of Innsbruck, Austria, Universitätsstraße 15, 2. Stock West, 6020, Innsbruck, Austria.
J Bioeth Inq. 2018 Sep;15(3):351-358. doi: 10.1007/s11673-018-9864-7. Epub 2018 Jul 2.
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.
各国政府越来越多地邀请患者组织（POs）参与医疗政策制定。通过邀请那些声称代表患者的患者组织，代表关系得以形成。然而，对于政府在何种情况下将患者组织接纳为患者代表，我们却知之甚少。基于对相关立法的分析，本文探究了自助组织（SHOs）这一特殊类型的患者组织为被奥地利和德国政府接纳为患者代表而必须满足的标准。由此，本文旨在为有关政府在引导自助组织方面的作用的讨论做出贡献。两国存在不同程度的监管（奥地利极少，德国较多）。两国政府不仅针对患者组织在患者代表方面制定了明确标准，还通过针对协会的隐性标准来引导代表患者的自助组织。我们依据回应性、授权和问责制等概念对研究结果进行了讨论。我们的研究结果表明，政府引导本身并不像先前研究所表明的那样是负面的，而是——取决于立法标准——可以促进患者代表方面的透明度和民主质量。
