越来越多的患者组织支持对他们所患疾病的研究。他们到底扮演了什么样的角色 ?这一类的组织是全都以同一种方式参与研究 ,还是有不同的方式 ?如果有不同的方式 ,我们如何对这些方式进行评价 ?由于制度环境和历史的差异 ,各国对这些问题做出了不同的回答。疾病的性质与特点不同 ,参与方式也会不同。尽管如此 ,我们仍能看到一些典型的参与形式。本文试图提供一些基本信息 ,对这一领域做些思考。由于这方面的研究很少见 ,本文主要以法国为例 ,并试图从中总结出一些一般性结论。文章显示患者组织对研究的参与越来越多 ,并讨论了两种类型的组织 :补充性组织和伙伴型组织。文中强调了伙伴型组织的独创性 ,这类组织有可能在长期横亘于专家和我们之间的鸿沟之上架起桥梁 More and more patient organizations support research on the diseases they suffer. What kind of role do they play in the end? Does this type of organization all participate in research in the same way, or are there different ways? If there are different ways, how do we evaluate these methods? Because of differences in institutional environment and history Countries have made different answers to these questions. The nature and characteristics of the disease are different and the mode of participation will be different. Despite this, we can still see some typical forms of participation. This article attempts to provide some basic information and think about this area. Because research in this area is rare, this paper mainly uses France as an example, and tries to summarize some general conclusions. The article shows that patient organizations increasingly participate in research and discuss two types of organizations: complementary and partner organizations. The article emphasizes the originality of partner organizations that may bridge the gap between experts and us for a long period of time.