Rabeharisoa Vololona
Centre de sociologie de l'innovation, Ecole nationale supérieure des mines de Paris, 60 boulevard Saint-Michel, Paris, Cedex 06 75272, France.
Soc Sci Med. 2003 Dec;57(11):2127-36. doi: 10.1016/s0277-9536(03)00084-4.
The past few decades have witnessed the increasingly active participation of patient organisations in research activities concerning them. They contribute substantially to the funding of scientific and clinical research. More importantly, certain patient organisations take strategic decisions concerning that research, and contribute to the production of knowledge on their diseases. In France, the AFM (Association Française contre les Myopathies-French Muscular Dystrophy Organisation), is a striking illustration. The paper argues that the model of the AFM's engagement in research-the "partnership model"-is original insofar as it renews the power relations between patients and professionals found in two classic models: the "auxiliary model" and the "emancipatory model". Based on a long-term study of the French Muscular Dystrophy Organisation, this "partnership model" is characterised and its implications discussed in three respects: the possible generalisation of the mode of relations it establishes between patients and professionals; its effects on the steering of research; and its consequences for the dynamics of patient organisations movements.
在过去几十年里，患者组织越来越积极地参与到与自身相关的研究活动中。它们为科学研究和临床研究的资金投入做出了巨大贡献。更重要的是，某些患者组织会对相关研究做出战略决策，并推动有关其疾病知识的产生。在法国，法国抗肌萎缩症协会（AFM）就是一个典型例子。本文认为，AFM参与研究的模式——“伙伴关系模式”具有独特之处，因为它重塑了患者与专业人员之间的权力关系，这种关系有别于两种经典模式：“辅助模式”和“解放模式”。基于对法国抗肌萎缩症组织的长期研究，本文对这种“伙伴关系模式”进行了特征描述，并从三个方面讨论了其影响：它所建立的患者与专业人员之间关系模式的可能推广；其对研究导向的影响；以及对患者组织运动动态的影响。
