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全国安全避风港网络:苏格兰视角。

A National Network of Safe Havens: Scottish Perspective.

机构信息

Health Informatics Centre, Ninewells Hospital & Medical School, University of Dundee, Dundee, United Kingdom.

Centre for Health Data Science, University of Aberdeen, Aberdeen, United Kingdom.

出版信息

J Med Internet Res. 2022 Mar 9;24(3):e31684. doi: 10.2196/31684.

Abstract

For over a decade, Scotland has implemented and operationalized a system of Safe Havens, which provides secure analytics platforms for researchers to access linked, deidentified electronic health records (EHRs) while managing the risk of unauthorized reidentification. In this paper, a perspective is provided on the state-of-the-art Scottish Safe Haven network, including its evolution, to define the key activities required to scale the Scottish Safe Haven network's capability to facilitate research and health care improvement initiatives. A set of processes related to EHR data and their delivery in Scotland have been discussed. An interview with each Safe Haven was conducted to understand their services in detail, as well as their commonalities. The results show how Safe Havens in Scotland have protected privacy while facilitating the reuse of the EHR data. This study provides a common definition of a Safe Haven and promotes a consistent understanding among the Scottish Safe Haven network and the clinical and academic research community. We conclude by identifying areas where efficiencies across the network can be made to meet the needs of population-level studies at scale.

摘要

十多年来,苏格兰已经实施并运行了一个安全港系统,该系统为研究人员提供了安全的分析平台,以访问链接的、去识别的电子健康记录(EHR),同时管理未经授权重新识别的风险。本文提供了苏格兰安全港网络的最新现状,包括其演变,以确定扩大苏格兰安全港网络能力以促进研究和改善医疗保健举措所需的关键活动。讨论了与苏格兰的 EHR 数据及其交付相关的一组流程。对每个安全港进行了采访,以详细了解其服务以及它们的共同之处。结果表明,苏格兰的安全港如何在保护隐私的同时促进 EHR 数据的重复使用。本研究为安全港提供了一个通用定义,并促进了苏格兰安全港网络以及临床和学术研究界之间的共识。最后,我们确定了可以在整个网络中提高效率的领域,以满足大规模人群研究的需求。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8215/8943560/a3392373b4de/jmir_v24i3e31684_fig1.jpg

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