区块链:解决电子病历数据的隐私和研究可用性权衡:健康数据管理中的一项新的颠覆性技术

G. Magyar
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引用次数: 65

摘要

区块链驱动的健康信息生态系统可以解决人们经常讨论的终身记录患者健康数据的问题,这可能严重阻碍患者的隐私以及研究和政策制定机构日益增长的数据饥饿。一方面,数据的普遍可用性在紧急情况下是至关重要的,并在很大程度上支持不同的研究、人口健康管理和发展活动,另一方面,使用相同的数据可能导致恶意行为者造成严重的社会和道德问题。目前,世界各地对隐私数据的监管各不相同,但基本原则始终是对患者隐私的防御和保护,以防止一般可用性。保护原则导致卫生系统开发商采取防御性、隐藏数据的态度,以避免违反整体法律规定。它促使政策制定者和不同的——主要是药物开发者——找到处理数据的方法,从而引发道德和政治辩论。在我们的论文中,我们介绍了区块链技术如何帮助解决安全数据存储问题,同时确保数据可用性。我们使用美国HIPAA法规的基本原则,该法规定义了健康数据的公共可用性标准,但是不同的地方法规可能会有很大差异。区块链的去中心化、无中介、加密安全属性提供了一种安全存储患者数据的新方法,同时以一种受监管的方式公开可用,其中设计良好的分布式点对点网络激励了全功能EHR系统的顺利运行。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Blockchain: Solving the privacy and research availability tradeoff for EHR data: A new disruptive technology in health data management
A blockchain powered Health information ecosystem can solve a frequently discussed problem of the lifelong recorded patient health data, which seriously could hurdle the privacy of the patients and the growing data hunger of the research and policy maker institutions. On one side the general availability of the data is vital in emergency situations and supports heavily the different research, population health management and development activities, on the other side using the same data can lead to serious social and ethical problems caused by malicious actors. Currently, the regulation of the privacy data varies all over the world, however underlying principles are always defensive and protective towards patient privacy against general availability. The protective principles cause a defensive, data hiding attitude of the health system developers to avoid breaching the overall law regulations. It makes the policy makers and different — primarily drug — developers to find ways to treat data such a way that lead to ethical and political debates. In our paper we introduce how the blockchain technology can help solving the problem of secure data storing and ensuring data availability at the same time. We use the basic principles of the American HIPAA regulation, which defines the public availability criteria of health data, however the different local regulations may differ significantly. Blockchain's decentralized, intermediary-free, cryptographically secured attributes offer a new way of storing patient data securely and at the same time publicly available in a regulated way, where a well-designed distributed peer-to-peer network incentivize the smooth operation of a full-featured EHR system.
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