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在神经学2.0时代,通过谷歌搜索神经系统疾病:从寻求健康相关信息到患者赋权、宣传及公开的自我披露。

Googling for Neurological Disorders: From Seeking Health-Related Information to Patient Empowerment, Advocacy, and Open, Public Self-Disclosure in the Neurology 2.0 Era.

作者信息

Martini Mariano, Bragazzi Nicola Luigi

机构信息

Department of Health Sciences, School of Public Health, University of Genoa, Genoa, Italy.

Laboratory for Industrial and Applied Mathematics, Department of Mathematics and Statistics, York University, Toronto, ON, Canada.

出版信息

J Med Internet Res. 2021 Mar 26;23(3):e13999. doi: 10.2196/13999.

Abstract

Since its introduction, the internet has played a major role in reshaping patient-physician communication and interactions, having fostered a shift from a paternalistic to a patient-centered model. Because of its dynamic nature, the internet has been used as a platform to not only disseminate knowledge-favored by improved access to an increasing wealth of available resources-but also to spread advocacy and awareness, contribute to fund-raising, and facilitate open, public self-disclosure of one's own disease, thus eliminating any taboo and reducing the stigma associated with it. The era of Medicine 2.0 is characterized by openness, collaboration, participation, and social networking. The current situation is completely different from the time when Lorenzo Odone's parents, after his diagnosis of adrenoleukodystrophy, decided to attend medical school in order to collect information about a devastating, unknown disease and had to contend with medical authorities at that establishment to convince them of the alleged effectiveness and safety of their discovered therapeutics. Orphan and rare neurological diseases have currently received recognition on web-based resources. However, while the intention is not to ridicule Odone's family legacy and the "complicated lessons" they have reported, some issues should be carefully addressed by health authorities, such as the reputability, reliability, and accuracy of material available on the internet and prevention of the dissemination of material that could instill illusions and unjustified hopes in individuals seeking medical treatment. Neurologists should be aware of such digital resources, participate in web-based activities, and recommend select high-quality websites to their patients.

摘要

自互联网问世以来,它在重塑医患沟通与互动方面发挥了重要作用,推动了从家长式模式向以患者为中心模式的转变。由于其动态特性,互联网不仅被用作传播知识的平台——通过改善对日益丰富的可用资源的获取——还被用于传播宣传和提高认识、助力筹款以及促进个人疾病的公开自我披露,从而消除任何禁忌并减少与之相关的污名。医学2.0时代的特点是开放、协作、参与和社交网络。当前的情况与洛伦佐·奥多内被诊断出肾上腺脑白质营养不良后,他的父母决定去医学院学习以收集有关这种毁灭性未知疾病的信息,并不得不与该机构的医学权威抗争以说服他们相信自己发现的疗法的所谓有效性和安全性的时代截然不同。孤儿病和罕见神经系统疾病目前已在网络资源上得到认可。然而,虽然无意嘲笑奥多内家族的遗产以及他们所报告的“复杂教训”,但卫生当局应仔细处理一些问题,例如互联网上可用材料的声誉、可靠性和准确性,以及防止传播可能在寻求治疗的个人中灌输幻想和不合理希望的材料。神经科医生应该了解此类数字资源,参与基于网络的活动,并向患者推荐精选的高质量网站。

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