文章基本信息

标题：Notches on the dial: a call to action to develop plain language communication with the public about users and uses of health data
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作者：P Alison Paprica ; Kimberlyn McGrail ; Michael J Schull 等
期刊名称：International Journal of Population Data Science
电子版ISSN：2399-4908
出版年度：2019
卷号：4
期号：1
页码：1-5
DOI：10.23889/ijpds.v4i1.1106
出版社：Swansea University
摘要：Population data science [1] researchers are not alone in recognizing the value of health and health-related data. In the era of big data, and with advent of machine learning and other artificial intelligence methods, organizations around the world are actively working to turn data into knowledge, and, in some cases, profit. The media and members of the public have taken notice, with high profile news stories about data breaches and privacy concerns [2-4] alongside some stories that call for increased use of data [5,6]. In response, public and private sector data-holding organizations and jurisdictions are turning their attention to policies, processes and regulations intended to ensure that personal data are used in ways that that the public supports. In some cases, these efforts include involving â€œpublicsâ€ in decisions about data, such as using patient and lay person advice and other inputs to help shape policies [7-10].
关键词：public engagement; transparency; consent; trust