The SAIL Databank: building a national architecture for e-health research and evaluation
The SAIL Databank: building a national architecture for e-health research and evaluation
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DOI：
10.1186/1472-6963-9-157
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发表时间：
2009-09-04
影响因子：
2.8
通讯作者：
Leake, Ken
中科院分区：
文献类型：
--
作者：
Ford, David V.;Jones, Kerina H.;Leake, Ken
背景：在病人和服务使用者通过卫生服务和其他公共部门组织时，收集了大量的电子数据，这些数据为研究和政策评估提供了巨大的潜力。卫生信息研究股（HIRU）的目标是发挥以电子方式保存的、基于个人的、例行收集的数据的潜力，开展和支持与卫生有关的研究。然而，在将这些数据用于这些目的之前，必须解决相当大的挑战，以确保符合通常称为信息治理的立法和指导方针。方法：确定了一组目标，以应对挑战，并根据信息治理建立安全匿名信息链接（SAIL）系统。这是为了：1)确保数据传输的安全；2)采用可靠的记录匹配技术，实现跨数据集的准确记录联动；3)对数据进行匿名化和加密，防止个人再次被识别；4)采取措施解决为研究人员创建的数据视图的披露风险；5)确保数据访问受到控制和授权；6)建立审查数据利用建议和批准输出的方法；7)获得信息治理符合性的外部验证。结果：建立了SAIL数据库，并在IBM ‘P’系列超级计算机Blue-C上运行DB2平台（AIX上的数据仓库版）。独立内部审计的结果是有利的，并得出结论认为，现有的制度为遵守信息治理提供了充分的保证。这个不断扩大的数据库已经拥有来自与健康和福祉有关的各种来源的5亿多份匿名和加密的个人记录。这包括覆盖整个威尔士（大约300万人口）的国家数据集和地方提供者级别的数据集，并且还在进一步增长。越来越多的高质量研究表明了数据库的效用。结论：通过采用务实的方法，我们已经能够解决建立匿名个人记录国家数据库的关键挑战，以便数据可用于研究和评估，同时满足信息治理的要求。
Background: Vast quantities of electronic data are collected about patients and service users as they pass through health service and other public sector organisations, and these data present enormous potential for research and policy evaluation. The Health Information Research Unit (HIRU) aims to realise the potential of electronically-held, person-based, routinely-collected data to conduct and support health-related studies. However, there are considerable challenges that must be addressed before such data can be used for these purposes, to ensure compliance with the legislation and guidelines generally known as Information Governance.Methods: A set of objectives was identified to address the challenges and establish the Secure Anonymised Information Linkage (SAIL) system in accordance with Information Governance. These were to: 1) ensure data transportation is secure; 2) operate a reliable record matching technique to enable accurate record linkage across datasets; 3) anonymise and encrypt the data to prevent re-identification of individuals; 4) apply measures to address disclosure risk in data views created for researchers; 5) ensure data access is controlled and authorised; 6) establish methods for scrutinising proposals for data utilisation and approving output; and 7) gain external verification of compliance with Information Governance.Results: The SAIL databank has been established and it operates on a DB2 platform (Data Warehouse Edition on AIX) running on an IBM 'P' series Supercomputer: Blue-C. The findings of an independent internal audit were favourable and concluded that the systems in place provide adequate assurance of compliance with Information Governance. This expanding databank already holds over 500 million anonymised and encrypted individual-level records from a range of sources relevant to health and well-being. This includes national datasets covering the whole of Wales (approximately 3 million population) and local provider-level datasets, with further growth in progress. The utility of the databank is demonstrated by increasing engagement in high quality research studies.Conclusion: Through the pragmatic approach that has been adopted, we have been able to address the key challenges in establishing a national databank of anonymised person-based records, so that the data are available for research and evaluation whilst meeting the requirements of Information Governance.