How to build an "active" patient? The work of AIDS associations in France
How to build an "active" patient? The work of AIDS associations in France
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DOI：
10.1016/j.socscimed.2005.06.025
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发表时间：
2006-02-01
影响因子：
5.4
通讯作者：
Barbot, J
中科院分区：
文献类型：
--
作者：
Barbot, J
什么是“活动性”患者？是大多数医学和与疾病相关的社会科学研究中出现的问题。本文考察了法国艾滋病协会为界定保健和研究中的“活跃”患者所开展的规范性工作。虽然抗击艾滋病的斗争经常被认为是同质化的，但我们看看不同协会(助手、行动起来-巴黎、行动陷阱和积极行动)之间的意见差异。我们发现了四种不同的情况：患者作为其疾病的管理者，患者的赋权，科学智慧的患者和实验者。对这些病例的系统比较表明，就相同的病理学而言，这些对“活跃”患者的看法基于不同的观察方式：不同类型的疾病知识(科学知识、临床知识、疾病经验)之间的关系的性质，以及医疗保健系统中不同行为者(政府、制药公司、医疗专业人员、患者)之间的角色和权力分配。这篇文章强调了使我们能够更好地了解这些差异的历史动态，特别是两代协会之间的主要区别，这些协会对其公共身份采取了不同的立场。(C)2005年由爱思唯尔有限公司出版。
"What is an "active" patient?" is a question that arises in most medicine and illness-related social science research. This article examines the normative work carried out by AIDS associations in France to define an "active" patient in healthcare and research. While the fight against AIDS is often presented as being homogenous, we look at the diversity of opinion between different associations (Aides, Act Up-Paris, Actions Traitements and Positifs). We find four different cases: the patient as manager of his illness, the empowerment of patients, the science-wise patient and the experimenter. Systematic comparison of these cases shows that these perceptions of the "active" patient, in terms of the same pathology, are based upon different ways of seeing: the nature of the relationships between the different types of knowledge of the illness (scientific knowledge, clinical knowledge, experience of the illness) and the distribution of roles and powers among the various actors in the healthcare system (the government, pharmaceutical companies, the medical profession, the patients). This article highlights the historical dynamics which allow us to have a better understanding of these differences, especially the major distinction between two generations of associations, which adopted different positions with regard to their public identity. (c) 2005 Published by Elsevier Ltd.