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Lay Crowd-Sourced Expertise (LCE) and Its Influence on the New Role of Patients: Ethical and Societal Issues

机译:划分人群资源专业知识(LCE)及其对患者新作用的影响:道德和社会问题

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The emergence of social media on the Internet allows patients to discuss about their chronic diseases within online communities sharing common interests. This allows patients to gather other patients' experience, and gain new knowledge that is usually not shared by healthcare professionals. In this context, further studies are required on the actual impact of the use of social networks on the quality of life of patients participating in these online communities, focusing on the evolving role and impact of Lay Crowdsourced expertise (LCE) in improving disease management and control. We present a study on a large number of posts from social networks of different online communities. This study allowed us to choose four pathologies, with distinctive characteristics relevant for our future analysis, and to define the themes that will be covered in future work by online questionnaires. The analysis of responses from patients, who volunteer to participate, will help us in exploring how interactions between patients, on these online communities, may help them to gain useful information for managing their conditions and improving their quality of life. Furthermore, we will identify new ethical issues that arise in the sharing of health data.
机译:社交媒体在互联网上的出现,让患者了解在线社区分享共同利益内的慢性疾病讨论。这允许患者收集其他病人的经验,并获得这通常不是由医疗专业人员共享新的知识。在此背景下,需要进一步的研究上的参与这些在线社区患者的生活质量的社交网络的使用的实际影响,重点莱众包专业知识(LCE)不断发展的作用和影响,提高疾病管理和控制。我们提出对大量来自不同网络社区的社交网络帖子的研究。这项研究使我们能够选择四种疾病,有关我们的未来分析鲜明特点,并确定将在今后的工作中通过网上问卷调查所涵盖的主题。的患者,谁自愿参加反应的分析,将有助于我们在探索如何患者之间的互动,对这些网上社区,可以帮助他们获得管理他们的条件,并提高他们的生活质量的有用信息。此外,我们将确定健康数据共享中出现的新的伦理问题。

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