The involvement of patients' associations in research
The involvement of patients' associations in research
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DOI：
10.1111/1468-2451.00359
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发表时间：
2002-03-01
影响因子：
--
通讯作者：
Callon, M
中科院分区：
文献类型：
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作者：
Rabeharisoa, V;Callon, M
患者协会越来越多地支持对影响他们的疾病的研究，他们的作用究竟是什么？所有这些关联都以同样的方式存在，还是有不同的形式存在？如果有，如何进行审查？这些问题的答案因国家、制度背景和历史而异。它们还取决于疾病的性质和特征。然而，除了这些不同的配置之外，还可以识别出典型的参与形式。本文旨在提供一些基本信息，并就这一问题提出一些思考。由于现有的研究很少，本文主要讨论的是法国的情况，从中初步得出较为一般性的结论。这表明患者协会越来越多地参与研究。它挑选出两种类型的协会，根据他们分配给病人的角色：辅助协会和伙伴协会。重点放在合作伙伴协会的独创性上，这种协会往往会弥合专家和我们普通人之间惯常的裂痕。
Patients' associations increasingly support research into the diseases affecting them, What exactly is their role? Are all such associations involved in the same way, or are there various forms of involvement? And if there are, how can they be reviewed? The answers to these questions vary with the countries, their institutional settings, and their history. They also depend on the nature and features of the diseases. Beyond these varied configurations, however, typical forms of involvement may be discerned. This article seeks to supply basic information and put forward some thoughts on the subject. As there are so few studies available, it deals in the main with the situation in France, from which more general conclusions are tentatively drawn. It shows the growing involvement of patients' associations in research. It singles out two types of association, on the basis of the role they assign to patients: auxiliary associations and partner associations. Emphasis is laid on the originality of the partner associations, which tend to bridge the customary rift between specialists and the rest of us.