PDF(Pubmed)
Abstract：
BACKGROUND: 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.
METHODS: 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.
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.
CONCLUSIONS: 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.
UNASSIGNED: 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.
METHODS: 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.
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.
CONCLUSIONS: 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.
UNASSIGNED: 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.
摘要：
背景：公众参与可以得到决策者的支持和限制。因此,公民要么以自上而下批准的格式参与，要么不得不转向颠覆。这些不同的参与实践，被邀请和不请自来，通常被研究人员视为相互排斥的。在这篇文章中,我们介绍了患者组织参与俄罗斯各种国家控制的审议机构的案例，这不适合患者参与实践的平滑二元区分。相反，确定的患者参与实践将看门人批准的互动与互动相结合，具有颠覆性和草根性。概念上,这意味着邀请参与和非邀请参与可以更好地理解为交织在一起的生态。
方法：本文基于定性的人种学研究，其中包括对国家控制的公众参与机构会议的参与性观察，例如公共委员会，与这些机构的成员进行了51次半结构化访谈，并对相关政策和方法文件进行了分析。获得了记录和转录所有访谈的知情同意。已使用主题分析来产生结果。
结果：俄罗斯患者组织通常非正式地工作，独立于国家批准的实践。一些颠覆性做法发生在官方会议之外，其他人成为广泛使用的最佳实践，其他人仍然是日常平凡的互动，这有助于维持患者组织的独立性，以对抗否则占主导地位和非民主的国家行为者。
结论：患者参与的生态化方法，将邀请和非邀请的做法解释为相互关联的，对于尽管存在与专制环境相关的所有限制，但公民仍保持独立的情况具有更好的解释力。将邀请和不请自来的做法概念化为情境，或单独的时间和空间事件，是一个有用的理论框架，可以理解多样化和看似矛盾的公众参与实践。
■研究参与者传达了对初始研究框架的修订，以纳入他们的需求。反复的访谈可以对研究参与者的初步发现进行三角测量。这篇文章是与患者组织代表合著的，直接为数据分析和演示做出了贡献。
方法：本文基于定性的人种学研究，其中包括对国家控制的公众参与机构会议的参与性观察，例如公共委员会，与这些机构的成员进行了51次半结构化访谈，并对相关政策和方法文件进行了分析。获得了记录和转录所有访谈的知情同意。已使用主题分析来产生结果。
结果：俄罗斯患者组织通常非正式地工作，独立于国家批准的实践。一些颠覆性做法发生在官方会议之外，其他人成为广泛使用的最佳实践，其他人仍然是日常平凡的互动，这有助于维持患者组织的独立性，以对抗否则占主导地位和非民主的国家行为者。
结论：患者参与的生态化方法，将邀请和非邀请的做法解释为相互关联的，对于尽管存在与专制环境相关的所有限制，但公民仍保持独立的情况具有更好的解释力。将邀请和不请自来的做法概念化为情境，或单独的时间和空间事件，是一个有用的理论框架，可以理解多样化和看似矛盾的公众参与实践。
■研究参与者传达了对初始研究框架的修订，以纳入他们的需求。反复的访谈可以对研究参与者的初步发现进行三角测量。这篇文章是与患者组织代表合著的，直接为数据分析和演示做出了贡献。
