Oncogene-driven advocacy: Collective expertise and therapeutic actionability.

IF 1.9 4区 医学 Q3 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH
Health Pub Date : 2025-04-28 DOI:10.1177/13634593251336521
Pascale Bourret, Madeleine Akrich, Florence Paterson, Alberto Cambrosio
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引用次数: 0

Abstract

This paper is intended as a contribution to the social science literature on Patient Advocacy Groups (PAGs). It examines the recent emergence and development of cancer patient organizations that self-define as "oncogene-focused," that is, as centered on tumor-driving genetic mutations that offer novel therapeutic opportunities for tumors to be targeted by precision drugs. Drawing on qualitative methods including interviews with representatives of oncogene focused PAGs, analysis of the groups' publications (biomedical journals, eNewsletters), websites, and social media activity, the paper explores the characteristics of these PAGs' forms of activism. It shows that their common denominator is a focus on patient survival. This shared goal translates into a form of activism that centers on therapeutic actionability, that is, a set of initiatives aiming at the articulation of research, clinical trials, and care to improve the patients' quality of life and maximize survival thanks to awareness of and access to the latest therapies. Beyond individual differences between PAGs, we observe the increasingly seamless entanglement of their activities. Their mutually supportive interventions result in the establishment of an ecosystemic form of activism that also succeeds in mobilizing clinicians and researchers at the increasingly porous interface between research and care.

癌基因驱动倡导:集体专业知识和治疗可操作性。
本文旨在对患者倡导团体(PAGs)的社会科学文献做出贡献。它研究了最近出现和发展的癌症患者组织,这些组织自我定义为“以癌基因为中心”,即以肿瘤驱动的基因突变为中心,为精准药物靶向肿瘤提供了新的治疗机会。本文采用定性方法,包括对以癌基因为重点的pag代表的访谈、对这些组织的出版物(生物医学期刊、电子新闻通讯)、网站和社交媒体活动的分析,探讨了这些pag行动主义形式的特征。这表明他们的共同点是关注病人的生存。这一共同目标转化为一种以治疗可操作性为中心的行动主义形式,也就是说,一系列旨在结合研究、临床试验和护理的举措,通过对最新疗法的认识和获取,提高患者的生活质量,最大限度地提高生存率。除了pag之间的个体差异之外,我们还观察到它们的活动越来越无缝地纠缠在一起。他们相互支持的干预导致建立了一种生态系统形式的行动主义,也成功地动员了临床医生和研究人员在研究和护理之间日益多孔的界面。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Health
Health Multiple-
CiteScore
4.90
自引率
0.00%
发文量
0
期刊介绍: Health: is published four times per year and attempts in each number to offer a mix of articles that inform or that provoke debate. The readership of the journal is wide and drawn from different disciplines and from workers both inside and outside the health care professions. Widely abstracted, Health: ensures authors an extensive and informed readership for their work. It also seeks to offer authors as short a delay as possible between submission and publication. Most articles are reviewed within 4-6 weeks of submission and those accepted are published within a year of that decision.
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