Rare Diseases
Rare Diseases
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DOI：
10.5694/j.1326-5377.1948.tb97107.x
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发表时间：
1946-08
影响因子：
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通讯作者：
Dr. Deepa Bhat;Jss Aher;Prof. Basavanagowdappa Hathur Jss Aher Mr. Madhusudan Bandyopadhyay-Prof.-Basavanagowdappa-Hathur-Jss-Aher-Mr.-2302793342;ST Nam;Ms. Jasmeet Kaur;Baweja Mr;Pankaj Buttan Dr. Amitava;Director General Bandopadhyay
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文献类型：
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作者：
Dr. Deepa Bhat;Jss Aher;Prof. Basavanagowdappa Hathur Jss Aher Mr. Madhusudan Bandyopadhyay-Prof.-Basavanagowdappa-Hathur-Jss-Aher-Mr.-2302793342;ST Nam;Ms. Jasmeet Kaur;Baweja Mr;Pankaj Buttan Dr. Amitava;Director General Bandopadhyay
数字医疗信息系统有望提高护理效率，降低患者的复杂性，增加信息获取和推进研究工作。一个突出的例子是多边平台（MSP），它本质上是一种信息业务，将关键的医疗保健利益相关者联系起来，提供个性化和聚合的信息服务。然而，基于平台的健康创新依赖于对敏感健康信息的广泛收集、存储和使用，从而引发了信息隐私问题。本研究使用隐私演算的角度来阐明患者的权衡考虑。我们使用的情况下，MSP，它连接患者，护理提供者和研究人员，为了模拟一个多层次的演算为绝症患者的健康信息。这些见解为逐步同意选项提供了信息，这些选项强调了信息价值和患者隐私之间的权衡。通过反思患者赋权的影响，这一概念性文件制定了一个研究议程，就如何研究和设计负责任的卫生信息系统。22 33 RD流血的ECONFERENCE使能技术促进可持续社会
Digital healthcare information systems promise to improve care efficiency, to reduce complexity for patients, and to increase access to information and advance research efforts. A prominent example are multi-sided-platforms (MSP), which are essentially an information business, linking key healthcare stakeholders for individualized as well as aggregated information services. However, platform-based health innovation relies on the extensive collection, storage, and use of sensitive health information, raising issues of information privacy. This study uses the privacy calculus perspective to shed light on patients’ trade-off considerations. We use the case of a MSP, which connects patients, care providers and researchers, in order to model a multi-level calculus for health information of terminally ill patients. These insights inform stepwise consent options, which highlight the trade-offs between information value and patient privacy. By reflecting on the implications for patient empowerment this conceptual paper develops a research agenda on how to study and design responsible health information systems. 22 33 RD BLED ECONFERENCE ENABLING TECHNOLOGY FOR A SUSTAINABLE SOCIETY