Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto
Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto
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DOI：
10.2196/17045
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发表时间：
2019-11-22
影响因子：
7.4
通讯作者：
Eysenbach, Gunther
中科院分区：
文献类型：
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作者：
deBronkart, Dave;Eysenbach, Gunther
十年前的 2009 年，“电子患者戴夫”德布隆卡特 (Dave deBronkart) 在《医学互联网研究杂志》 (JMIR) 主编冈瑟·艾森巴赫 (Gunther Eysenbach) 组织的多伦多医学 2.0 会议上发表了颇具影响力的主题演讲，他将会议主题围绕参与、开放、协作、自动调节和社交网络等主题，以改善 21 世纪的医疗保健，而患者参与是其中的主要组成部分。许多人认为这是参与式医学运动中的一个决定性事件，也许是一场社会运动的开始，类似于女权运动，戴夫的主题演讲标题“给我我该死的数据”成为患者要求更多地访问其电子健康记录的口号和标签。在 JMIR 成立 20 周年之际（也是主题演讲 10 年后），我们通过发布这些初步对话的记录作为患者访问数据的权利和拯救生命的权利的宣言，庆祝主题演讲对参与式医学运动和#gimmemydamndata（也#GMDD）的影响。
Ten years ago, in 2009, "e-Patient Dave" deBronkart delivered an influential keynote speech at the Medicine 2.0 conference in Toronto, organized by the Journal of Medical Internet Research's (JMIR's) editor-in-chief Gunther Eysenbach, who themed the conference around the topics of participation, openness, collaboration, apomediation, and social networking to improve health care for the 21st century-with patient participation being a major component. Many see this as a defining event within the participatory medicine movement, perhaps the beginning of a social movement, similar to the women's rights movement, with the title of Dave's keynote "Gimme my damn data" becoming a rallying cry and hashtag for patients demanding more access to their electronic health records. On the occasion of the 20th anniversary of JMIR (and 10 years after the keynote), we are celebrating the impact of the keynote for the participatory medicine movement and #gimmemydamndata (also #GMDD) by publishing the transcript of these initial conversations as a manifesto of patients' rights to access their data and their right to save their lives.