癌症患者博客:患者、临床医生和研究人员如何从丰富的疾病叙述中学习

Lisa Gualtieri, Fiona Y. Akhtar
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引用次数: 19

摘要

由癌症患者撰写的博客可以为其他患者提供关于在疾病和治疗过程中会发生什么的深刻见解,可以为肿瘤学家和其他临床医生提供关于患者预约之外的经验的信息,并且可以提高研究人员对治疗效果和替代方案的认识。虽然患者使用多种形式的社交媒体和在线社区,但博客的独特之处在于,它们提供了对疾病和治疗的许多方面的叙述,提供了对疾病经历的全面看法,通常是从诊断到幸存者的生活。然而,到目前为止,患者博客的影响一直不大,因为患者博客遍布互联网,而且由于没有患者博客的中央存储库,分析的机会有限。考虑到癌症对人们生活的改变和潜在的毁灭性影响,我们寻求开发一种工具,可以分析成千上万的患者撰写的博客,以改善癌症患者的护理。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Cancer patient blogs: How patients, clinicians, and researchers learn from rich narratives of illness
Blogs written by cancer patients can offer deep insights to other patients about what to expect in the course of illness and treatment, can provide information to oncologists and other clinicians about patient experiences outside of appointments, and can increase researcher awareness of treatment effects and alternatives. While many forms of social media and online communities are used by patients, blogs are unique in that they provide a narrative of many aspects of disease and treatment, offering a comprehensive view of the disease experience delivered in installments, often from diagnosis through life as a survivor. However, the impact of patient blogs has been modest thus far because patient blogs are spread across the internet and, with no central repository of patient blogs, opportunities for analysis are limited. Given the life-altering and potentially devastating impact of cancer on people's lives, we seek to develop a tool that will analyze tens of thousands of patient-authored blogs to improve cancer patient care.
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