A Profile of the SAIL Databank on the UK Secure Research Platform.
A Profile of the SAIL Databank on the UK Secure Research Platform.
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DOI：
10.23889/ijpds.v4i2.1134
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发表时间：
2019-11-20
影响因子：
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通讯作者：
Lyons, R A
中科院分区：
文献类型：
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作者：
Jones, K H;Ford, D V;Lyons, R A
背景：安全匿名信息链接（SAIL）数据库是主要关于威尔士人口的已识别数据集的国家数据安全港，以匿名形式向世界各地的研究人员提供。它的建立是为了能够提供在卫生和其他公共服务提供过程中收集到的有关个人的大量数据，以回答如果不付出巨大努力就无法解决的重要问题。 SAIL 数据库是其他依靠数据进行研究的资助中心的基石。 方法：SAIL 是一个数据存储库，周围有一套物理、技术和程序控制措施，体现了适当的隐私设计治理模型，以公众参与为基础，以保护数据并促进数据利用。 SAIL 在英国安全研究平台 (SeRP) 上运行，这是一个可定制的技术和分析平台。研究人员通过这个安全的研究环境访问匿名数据，在审查披露风险后可以发布结果。 SAIL 数据被用于多个研究领域，以评估健康和社会暴露以及政策干预的影响。讨论：经验教训及其应用包括：管理不断变化的立法和监管要求；采用多层、分层的安全机制；努力提高分析能力效率；制定多方面的公众参与计划。进一步的工作包括：合并新的数据类型；启用数据访问的替代方式；结论：SAIL 代表了一项持续的工作计划，旨在开发和维护广泛的整体人口数据资源以供研究。其隐私设计模型和 UK SeRP 技术获得了国际赞誉，我们不断努力证明可信度，以支持数据提供商的保证和公众在数据使用方面的可接受性。在这个快速发展的领域，我们努力进一步改进，并继续与我们的同龄人相互学习。
BACKGROUND: The Secure Anonymised Information Linkage (SAIL) Databank is a national data safe haven of de identified datasets principally about the population of Wales, made available in anonymised form to researchers across the world. It was established to enable the vast arrays of data collected about individuals in the course of health and other public service delivery to be made available to answer important questions that could not otherwise be addressed without prohibitive effort. The SAIL Databank is the bedrock of other funded centres relying on the data for research.APPROACH: SAIL is a data repository surrounded by a suite of physical, technical and procedural control measures embodying a proportionate privacy-by-design governance model, informed by public engagement, to safeguard the data and facilitate data utility. SAIL operates on the UK Secure Research Platform (SeRP), which is a customisable technology and analysis platform. Researchers access anonymised data via this secure research environment, from which results can be released following scrutiny for disclosure risk. SAIL data are being used in multiple research areas to evaluate the impact of health and social exposures and policy interventions.DISCUSSION: Lessons learned and their applications include: managing evolving legislative and regulatory requirements; employing multiple, tiered security mechanisms; working hard to increase analytical capacity efficiency; and developing a multi-faceted programme of public engagement. Further work includes: incorporating new data types; enabling alternative means of data access; and developing further efficiencies across our operations.CONCLUSION: SAIL represents an ongoing programme of work to develop and maintain an extensive, whole population data resource for research. Its privacy-by-design model and UK SeRP technology have received international acclaim, and we continually endeavour to demonstrate trustworthiness to support data provider assurance and public acceptability in data use. We strive for further improvement and continue a mutual learning process with our contemporaries in this rapidly developing field.