deBronkart Dave, Eysenbach Gunther
Society for Participatory Medicine, Nashua, NH, United States.
JMIR Publications, Toronto, ON, Canada.
J Med Internet Res. 2019 Nov 22;21(11):e17045. doi: 10.2196/17045.
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.
十年前,即2009年,“电子患者戴夫”·德布朗卡特在由《医学互联网研究杂志》(JMIR)主编冈瑟·艾森巴赫组织的多伦多医学2.0会议上发表了一场颇具影响力的主题演讲。该会议围绕参与、开放、协作、去中介化和社交网络等主题展开,旨在改善21世纪的医疗保健——患者参与是其中的一个主要组成部分。许多人将此视为参与式医疗运动中的一个决定性事件,或许是一场社会运动的开端,类似于女权运动,戴夫主题演讲的标题“把我的该死数据给我”成为了患者要求更多地获取其电子健康记录的战斗口号和标签。在JMIR成立20周年之际(以及主题演讲发表10年后),我们通过发布这些最初对话的文字记录,将其作为患者获取数据权利和拯救生命权利的宣言,来庆祝该主题演讲对参与式医疗运动以及#gimmemydamndata(也即#GMDD)的影响。