Health, Ethics and Society Department, Care and Public Health Institute, Maastricht University, Maastricht, The Netherlands.
Department of Neurology and Neurosurgery, Samara State Medical University, Samara, Russia.
Health Expect. 2024 Aug;27(4):e14150. doi: 10.1111/hex.14150.
Public participation can be both supported and limited by decision-makers. Therefore, citizens either participate in top-down approved formats or have to turn towards subversion. These different participation practices, called invited and uninvited, are often treated by researchers as mutually exclusive. In this article, we present the case of patient organisations' involvement in various state-controlled deliberation bodies in Russia, which does not fit into a smooth binary distinction of the patient participation practice. Instead, identified patient participation practices combine interaction approved by gatekeepers with interaction, which are subversive and grassroots-initiated. Conceptually, it means that invited and uninvited participation can be better understood as intertwined ecologies.
The article is based on a qualitative ethnographic study, which includes participatory observations of the meetings of state-controlled public participation bodies, such as public councils, 51 semi-structured interviews with members of these bodies and an analysis of the relevant policy and methodological documents. Informed consent to record and transcribe all interviews was obtained. Thematic analysis has been used to produce the results.
Russian patient organisations often work informally and independently of state-approved practices expected from them. Some subversive practices happen outside official meetings, others become widely used best practices and others remain everyday mundane interactions, which contribute to the maintenance of the independence of patient organisations against otherwise dominating and nondemocratic state actors.
The ecologising approach to patient participation, which interprets invited and uninvited practices as interconnected, has better explanatory power for cases in which citizens maintain independence despite all limitations associated with authoritarian settings. Conceptualising invited and uninvited practices as situations, or separate time- and space-bound events, is a helpful theoretical framework for understanding diverse and seemingly contradictory public participation practices.
Research participants communicated amendments to the initial research framework to incorporate their needs. Repeated interviews allowed triangulation of preliminary findings with research participants. The article is co-authored with the patient organisation representative, who has contributed directly to data analysis and presentation.
公众参与既可以得到决策者的支持，也可以受到他们的限制。因此，公民要么参与自上而下批准的形式，要么不得不转向颠覆。这些不同的参与实践，即所谓的受邀和未受邀，通常被研究人员视为相互排斥的。在本文中，我们介绍了俄罗斯患者组织参与各种国家控制的审议机构的情况，这与患者参与实践的平稳二元区分不相符。相反，确定的患者参与实践将经把关人批准的互动与具有颠覆性和基层发起性质的互动结合在一起。从概念上讲，这意味着受邀和未受邀的参与可以更好地理解为相互交织的生态系统。
本文基于一项定性民族志研究，包括对国家控制的公众参与机构（如公共委员会）会议的参与式观察、对这些机构成员的 51 次半结构化访谈，以及对相关政策和方法文件的分析。获得了记录和转录所有访谈的知情同意。使用主题分析生成结果。
俄罗斯患者组织经常以非正式的方式运作，独立于国家对他们期望的批准实践。一些颠覆性的做法发生在官方会议之外，其他做法则成为广泛使用的最佳实践，还有一些做法则是日常平凡的互动，这有助于维护患者组织的独立性，对抗否则主导和非民主的国家行为者。
将患者参与的生态化方法解释为相互关联的受邀和未受邀实践，对于那些尽管存在与威权环境相关的所有限制，但仍保持独立性的公民案例，具有更好的解释力。将受邀和未受邀的实践概念化为情境，或单独的时间和空间限定的事件，是理解不同且看似矛盾的公众参与实践的有用理论框架。
研究参与者沟通了对初始研究框架的修订，以纳入他们的需求。重复访谈允许对初步发现与研究参与者进行三角验证。本文由患者组织代表共同撰写，他直接为数据分析和演示做出了贡献。
