Faculty of Social and Political Sciences, University of Peloponnese, Corinth, Greece.
University Mental Health Research Institute, Athens, Greece.
Health Expect. 2018 Apr;21(2):474-484. doi: 10.1111/hex.12638. Epub 2017 Nov 1.
Patient organization participation in health policy decision making is an understudied area of inquiry. A handful of qualitative studies have suggested that the growing number of patient organizations in Europe and their increasing involvement in policy issues do not result in high political effectiveness. However, existing research is largely country-specific.
To examine the degree and impact of cancer patient organization (CPO) participation in health policy decision making in EU-28 and to identify their correlates.
A total of 1266 members of CPOs participated in this study, recruited from a diversity of sources. CPO participation in health policy was assessed with the Health Democracy Index, a previously developed instrument measuring the degree and impact of patient organization participation in various realms of health policy. Additional questions collected information about participants' and the CPO's characteristics. Data were gleaned in the form of an online self-reported instrument.
The highest degree of CPO participation was observed with respect to hospital boards, reforms in health policy and ethics committees for clinical trials. On the contrary, the lowest was discerned with regard to panels in other important health-related organizations and in the Ministry of Health. The reverse pattern of results was observed concerning the Impact subscale. As regards the correlates of CPO participation, legislation bore the strongest association with the Degree subscale, while organizational factors emerged as the most important variables with regard to the Impact subscale.
Research findings indicate that a high degree of CPO participation does not necessarily ensure a high impact. Efforts to promote high and effective CPO participation should be geared towards the establishment of a health-care law based on patient rights as well as to the formation of coalitions among CPOs and the provision of training to its members.
患者组织参与卫生政策决策制定是一个研究不足的领域。少数定性研究表明，欧洲不断增加的患者组织及其对政策问题的日益参与，并没有带来较高的政治效果。然而，现有的研究在很大程度上是针对特定国家的。
考察欧盟 28 个成员国中癌症患者组织（CPO）参与卫生政策决策的程度和影响，并确定其相关因素。
本研究共招募了来自不同来源的 1266 名 CPO 成员。采用先前开发的健康民主指数（Health Democracy Index）评估 CPO 参与卫生政策的程度和影响，该指数衡量患者组织在卫生政策各个领域的参与程度和影响。此外，还收集了参与者和 CPO 特征的附加问题。数据以在线自我报告工具的形式收集。
CPO 参与程度最高的是医院董事会、卫生政策改革和临床试验伦理委员会。相反，在其他重要的与健康相关的组织和卫生部的小组中，参与程度最低。在影响子量表上则呈现相反的结果模式。就 CPO 参与的相关因素而言，立法与程度子量表的关联最强，而组织因素则是影响子量表中最重要的变量。
研究结果表明，CPO 参与程度高并不一定能确保产生高影响。为促进 CPO 高度有效参与，应致力于制定以患者权利为基础的医疗保健法，并促成 CPO 之间的联盟以及为其成员提供培训。
