Epstein Steven
Northwestern University, Department of Sociology, 1810 Chicago Ave., Evanston, IL 60208, USA.
Soc Sci Med. 2016 Sep;165:246-254. doi: 10.1016/j.socscimed.2016.01.048. Epub 2016 Jan 28.
A critical review of recent literature on U.S. social movements concerned with matters of health and illness prompts reconsideration of the prevailing conception of such movements as necessarily isolated and particularistic. With a focus on disease-constituency-based mobilization-presently the most potent model of efficacious activism to be found in the domain of health and illness in the United States-I argue that such activism may tend in two directions: a specific response to an imminent disease threat, and a bridging of collective action frames and identities that can lead to connections across differences and broader mobilization. Case studies have demonstrated how patient activism has affected the management of illness, attitudes and practices of health professionals, research practices, processes of innovation, state policies, and corporate behavior. Through close analysis of patient group mobilization and its distinctive orientation toward knowledge and expertise, I argue that patient groups in practice may connect with or influence one another or a range of other forms of mobilization in relation to health, and I examine the "linkage mechanisms"-spillover, coalition, and frame amplification-by which this can occur. Rather than imagine a stark opposition between particularistic, single-issue health politics, on the one hand, and universalistic efforts to transform the meaning and practice of health and health care in the United States, on the other, I propose closer attention to the potentially Janus-faced character of many health movement organizations and the ways in which they may look either inward or outward.
对近期有关美国健康与疾病问题社会运动的文献进行批判性审视，促使人们重新思考将此类运动普遍视为必然孤立且特定化的观念。以基于疾病群体的动员为重点——目前在美国健康与疾病领域可找到的最有效的行动主义模式——我认为这种行动主义可能会朝着两个方向发展：对迫在眉睫的疾病威胁做出具体回应，以及弥合集体行动框架和身份认同，从而促成跨越差异的联系和更广泛的动员。案例研究表明患者行动主义如何影响疾病管理、医疗专业人员的态度和实践、研究实践、创新过程、国家政策以及企业行为。通过对患者群体动员及其对知识和专业技能的独特取向进行深入分析，我认为患者群体在实践中可能会相互联系或相互影响，或者与一系列其他与健康相关的动员形式产生联系，并且我研究了促成这种情况发生的“联动机制”——溢出、联盟和框架放大。与其设想一方面是特定化的、单一问题的健康政治，另一方面是在美国改变健康及医疗保健意义与实践的普遍努力之间存在鲜明对立，我建议更密切关注许多健康运动组织可能具有的两面性特征，以及它们可能向内或向外看的方式。
