Emerging dynamics of evidence and trust in online user-to-user engagement: the case of 'unproven' stem cell therapies
Emerging dynamics of evidence and trust in online user-to-user engagement: the case of 'unproven' stem cell therapies
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在线用户间参与的证据和信任的新动态：“未经证实”的干细胞疗法的案例
DOI：
10.1080/09581596.2018.1446509
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发表时间：
2018
影响因子：
2.8
通讯作者：
Datta S
中科院分区：
文献类型：
--
作者：
Datta S
本文探讨了患者及其家人(以下称为“用户”)如何通过在线社区共享和评估特定疾病的证据。其目的是了解用户对医疗保健和知识生产的参与揭示了社会对监管机构、生物伦理学家和科学家等循证医学机构不断变化的信任观念，以及对循证医学的影响。为此，我使用了实验性干细胞疗法(ESCT)的案例。ESCT在学术文献中通常被贴上“未经证实”的标签，这一标签将缺乏确凿的临床证据描述为不安全、无效，因此在临床使用时也是不道德的。尽管有这样的框架，用户与其他用户互动，为自己分享和评估所有可用的证据，包括正在进行的临床试验和经验证据，以建立信任并进行电子SCT。越来越多的用户与证据的接触发生在在线社区中，从用户创建和用户运行的Facebook页面，到医疗保健提供者网站上的用户对用户讨论论坛，或者对话中几乎没有提供者参与的博客。在这篇文章中，我利用这些用户对话的一个样本，展示了什么被视为证据以及如何为其建立信任的复杂和不可预测的方式正在发生变化。在这样做的过程中，我反思了循证医学机构和社会之间不断变化的关系，以加强对处于公共卫生政策证据基础核心的证据的控制。
This article explores the ways in which patients and their families (hereafter referred as ‘users’) share and evaluate disease-specific evidence via online communities. The aim is to understand what this user engagement in healthcare and knowledge production reveals about society’s shifting perceptions of trust in the institutions of ‘evidence-based medicine’ (EBM) such as regulators, bioethicists and scientists and the implications for EBM. To do this, I use the case of experimental stem cell therapies (eSCTs). ESCTs are commonly labelled in academic literature as ‘unproven’, a label that frames their lack of conclusive clinical evidence as unsafe, inefficacious and thus unethical when clinically used. Despite this framing, users engage with other users to share and evaluate all available evidence for themselves, including on-going clinical trial and experiential evidence to build trust for and undertake eSCTs. Increasingly, this user engagement with evidence takes place in online communities that range from user-created and user-run Facebook pages to user-to-user discussion forums on healthcare provider sites or blogs with little if any provider-input in conversations. In this paper, I draw on a sample of these user conversations to show the complex and unpredictable ways in which what counts as evidence and how trust is built for it are shifting. In so doing, I reflect on the shifting relations between the institutions of EBM and society for greater control over evidence that lies at the heart of the evidentiary basis of public health policies.