PatientsLikeMe the case for a data-centered patient community and how ALS patients use the community to inform treatment decisions and manage pulmonary health.
PatientsLikeMe the case for a data-centered patient community and how ALS patients use the community to inform treatment decisions and manage pulmonary health.
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DOI：
10.1177/1479972309348655
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发表时间：
2009-01-01
影响因子：
4.1
通讯作者：
Massagli, M
中科院分区：
文献类型：
--
作者：
Frost, J;Massagli, M
当患者上网不仅讨论健康和日常生活，而且分享详细的健康数据时，会发生什么？PatientsLikeMe是一个在线平台，在这个平台上，患有改变生活状况的患者可以分享有关症状、治疗和结果的结构化信息，查看这些数据的个人和汇总报告，并在论坛和私人消息上讨论健康和获得支持。在这个案例研究中，我们描述了这个平台的组件，以及肌萎缩侧索硬化症患者如何使用该网站来管理和改善肺健康。对包含预设术语的论坛内容的定性分析揭示了使用模式。与其他在线社区一样，PatientsLikeMe的成员根据自己的个人经历相互支持，并就医疗问题和如何改善日常生活相互建议。该患者平台的独特之处在于，成员通过参考为每个患者成员显示的具体数据来定制问题和咨询。PatientsLikeMe将数据添加到患者调查中，以了解如何改善日常生活和长期健康结果。
What happens when patients go online to not only discuss health and daily living but to share detailed health data? PatientsLikeMe is an online platform where patients with life-altering conditions share structured information about symptoms, treatments, and outcomes, view individual and aggregated reports of these data, and discuss health and garner support on forums and through private messages. In this case study, we describe the components of this platform and how people with Amyotrophic lateral sclerosis have used the site to manage and improve pulmonary health. A qualitative analysis of forum content containing preset terms reveals patterns in use. As in other online communities, members of PatientsLikeMe offer one another support based on their own personal experience and advise each other on both medical issues and how to improve day-to-day life. Unique to this patient platform, members tailor questions and consults by referencing concrete data displayed for each patient member. PatientsLikeMe adds data into patient investigations on how to improve daily life and long term health outcomes.