Kerr Anne, Chekar Choon Key, Swallow Julia, Ross Emily, Cunningham-Burley Sarah
University of Glasgow, Glasgow, UK.
Faculty of Health and Medicine, Lancaster University, Lancaster UK.
New Genet Soc. 2021 Jan 17;40(1):112-131. doi: 10.1080/14636778.2020.1868986. eCollection 2021.
As precision oncology has evolved, patients and their families have become more involved in efforts to access these treatments via fundraising and campaigning that take place outside of the larger cancer charities. In this paper, we explore the solidarities, networks, and emotional work of the UK-based access advocates, drawing on the stories of nine advocates, which included interviews and content analyses of their social media posts and coverage of their case in news, commentary, and fundraising websites. We consider the emotional and knowledge work of building networks that spanned consumerist and activist agendas, forged individual and collective goals, and orientations toward the public, private, and third sectors as part of securing support and access. Through these various practices, the actors we have studied cultivated personal advantage and solidarities with other patients and advocates, and in so doing engaged in self and collective advocacy alongside and beyond mainstream cancer charities.
随着精准肿瘤学的发展，患者及其家属越来越多地通过在大型癌症慈善机构之外开展的筹款和宣传活动来参与获取这些治疗的努力。在本文中，我们借鉴九位倡导者的故事，探讨了英国获取治疗倡导者的团结、网络和情感工作，其中包括对他们社交媒体帖子的访谈和内容分析，以及新闻、评论和筹款网站对他们案例的报道。我们将建立跨越消费主义和激进主义议程、形成个人和集体目标以及对公共、私营和第三部门的取向的网络的情感和知识工作视为获得支持和获取治疗的一部分。通过这些不同的做法，我们研究的行为者培养了个人优势以及与其他患者和倡导者的团结，从而在主流癌症慈善机构之外并与之并行地进行自我和集体倡导。
