The public shaping of medical research: patient associations, health movements and biomedicine
The public shaping of medical research: patient associations, health movements and biomedicine
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医学研究的公众塑造：患者协会、健康运动和生物医学
DOI：
10.1080/14636778.2015.1130612
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发表时间：
2016
影响因子：
1.8
通讯作者：
Dimond R
中科院分区：
文献类型：
--
作者：
Dimond R
患者协会在塑造医学研究中的作用是一个及时的话题，尤其是因为近年来，由患者和家属领导的高调团体成功地开展了活动，将罕见疾病患者的需求放在政治和科学议程上。因此，在不断增长的社会学文献中，《公共塑造医学研究》是一个受欢迎的补充。13章中的每一章都有不同的侧重点：强调围绕不同种类的疾病、疾病类别和技术动员的特定类型的集体活动；不同的模式和概念；以及侧重于不同类型的问题，包括这类工作的成功、失败和未来的挑战。贡献者的名单同样多种多样，从医学社会学家、政治学家和科学技术研究学者，到生物学家和药剂师，从早期职业研究人员到高级教授(包括著名的社会学理论家，如沃罗纳·拉比哈里索、彼得·康拉德和大卫·赫斯)和患者代表。管理这一范围的声音和方法并不是一件容易的事情，编辑们已经成功地制作了一本连贯的卷。2012年在德国举行的“患者组织、健康运动和医学研究”国际会议上发起了这一系列活动，这无疑有助于编辑们在共同的主题下认识和汇聚这些工作。清晰的开篇和结束语有助于《公共塑造医学研究》的连贯性，引导读者通过患者、家庭、活动家和专业人士塑造医学研究的许多路线和背景。该书分为三个部分。第一部分借鉴了实证案例研究。博拉特关于乳腺癌运动的章节强调了活动家和研究人员之间的合作如何将研究范式从“生物医学模式”转变为更广泛的“公共健康模式”。但她强调，这并不一定是一个轻松的过程。它是由“受过良好教育和精通政治的”活动家(37人)领导的，他们掌握了流利的科学语言，以便从事合作研究并挑战传统知识。Reimann(专注于德国囊性纤维化协会)和Nourisser等人(关于EURODIS，一种欧洲罕见疾病集体)的章节都为理解(罕见)疾病关联的方法提供了有趣的案例研究。Akrich等人。回到一个更具学术性的关于“循证激进主义”的讨论，以强调患者经验的产生和流通作为证据，这一章反映了作者对围绕患者专业知识、主动性和组织的复杂性和紧张关系的深刻了解。本章的最后一章
The role of patient associations in the shaping of medical research is a timely topic, not least because in recent years, high profile groups, led by patients and families, have successfully campaigned to put the needs of those with rare disease on the political and scientific agenda. The Public Shaping of Medical Research is therefore a welcome addition to the growing sociological literature. Each of the 13 chapters takes a different focus: emphasizing particular kinds of collective activities mobilized around different kinds of diseases, disease categories and technologies; different models and concepts; and focusing on different kinds of issues, including the successes, failures and future challenges of such work. The list of contributors is equally varied, from medical sociologists, political scientists and science and technology studies scholars, to biologists and pharmacists, and from early career researchers to senior professors (including notable sociological theorists such as Vololona Rabeharisoa, Peter Conrad and David Hess) and patient representatives. Managing this range of voices and approaches is no mean feat, and the editors have succeeded in producing a cohesive volume. The collection was initiated at an international conference on “Patient organisations, health movements and medical research” which took place in Germany in 2012, and this will no doubt have helped the editors in recognizing and bringing together the work under shared themes. The articulate opening and concluding chapters contribute to the coherency of The Public Shaping of Medical Research, guiding the reader through the many routes and contexts within which patients, families, activists and professionals shape medical research.The book is divided into three parts. The first draws on empirical case studies. Boralt’s chapter about the breast cancer movement highlights how collaboration between activists and researchers has shifted the research paradigm from a “biomedical model” to a wider “public health model.” But she highlights this was not necessarily an easy process. It was led by “well-educated and politically savvy” activists (37) who became fluent in scientific language in order to engage in collaborative research and challenging conventional knowledge. The chapters by Reimann (focusing on the German Cystic Fibrosis Association) and Nourisser et al.(on EURODIS, a European rare disease collective) both provide interesting case studies for understanding the approach of (rare) disease associations. Akrich et al. return to a more academic discussion about “evidence-based activism” to highlight the production and circulation of patient experiences for use as evidence, a chapter that reflects the authors’ deep knowledge of the complexities and tensions surrounding patient expertise, activisms and organization. The final chapter in this