Googling for Neurological Disorders: From Seeking Health-Related Information to Patient Empowerment, Advocacy, and Open, Public Self-Disclosure in the Neurology 2.0 Era.
Googling for Neurological Disorders: From Seeking Health-Related Information to Patient Empowerment, Advocacy, and Open, Public Self-Disclosure in the Neurology 2.0 Era.
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DOI：
10.2196/13999
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发表时间：
2021-03-26
影响因子：
7.4
通讯作者：
Bragazzi NL
中科院分区：
文献类型：
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作者：
Martini M;Bragazzi NL
自推出以来，互联网在重塑医患沟通和互动方面发挥了重要作用，促进了从家长式模式向以患者为中心的模式的转变。由于其动态性，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而受到青睐），而且还可以传播宣传和意识，促进筹款，并促进公开、公开地自我披露自己的疾病，从而消除任何禁忌并减少与之相关的耻辱。医学2.0时代的特点是开放、协作、参与、社交。现在的情况与洛伦佐·奥多内（Lorenzo Odone）诊断出肾上腺脑白质营养不良后的情况完全不同，当时洛伦佐·奥多内（Lorenzo Odone）的父母决定去医学院学习，以收集有关一种毁灭性的未知疾病的信息，并不得不与该机构的医疗当局抗衡，以说服他们所发现的治疗方法所谓的有效性和安全性。孤儿和罕见的神经系统疾病目前已在网络资源上获得认可。然而，虽然目的不是嘲笑奥多内的家族遗产和他们报告的“复杂的教训”，但卫生当局应该认真解决一些问题，例如互联网上可用材料的信誉、可靠性和准确性，以及防止传播可能给寻求医疗的个人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。
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.