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澳大利亚跨司法管辖区健康相关研究的数据链接基础设施。

Data linkage infrastructure for cross-jurisdictional health-related research in Australia.

机构信息

Curtin University, Perth, Western Australia.

出版信息

BMC Health Serv Res. 2012 Dec 29;12:480. doi: 10.1186/1472-6963-12-480.

Abstract

BACKGROUND

The Centre for Data Linkage (CDL) has been established to enable national and cross-jurisdictional health-related research in Australia. It has been funded through the Population Health Research Network (PHRN), a national initiative established under the National Collaborative Research Infrastructure Strategy (NCRIS). This paper describes the development of the processes and methodology required to create cross-jurisdictional research infrastructure and enable aggregation of State and Territory linkages into a single linkage "map".

METHODS

The CDL has implemented a linkage model which incorporates best practice in data linkage and adheres to data integration principles set down by the Australian Government. Working closely with data custodians and State-based data linkage facilities, the CDL has designed and implemented a linkage system to enable research at national or cross-jurisdictional level. A secure operational environment has also been established with strong governance arrangements to maximise privacy and the confidentiality of data.

RESULTS

The development and implementation of a cross-jurisdictional linkage model overcomes a number of challenges associated with the federated nature of health data collections in Australia. The infrastructure expands Australia's data linkage capability and provides opportunities for population-level research. The CDL linkage model, infrastructure architecture and governance arrangements are presented. The quality and capability of the new infrastructure is demonstrated through the conduct of data linkage for the first PHRN Proof of Concept Collaboration project, where more than 25 million records were successfully linked to a very high quality.

CONCLUSIONS

This infrastructure provides researchers and policy-makers with the ability to undertake linkage-based research that extends across jurisdictional boundaries. It represents an advance in Australia's national data linkage capabilities and sets the scene for stronger government-research collaboration.

摘要

背景

为了在澳大利亚开展国家和跨司法管辖区的健康相关研究,建立了数据链接中心(CDL)。该中心由人口健康研究网络(PHRN)资助,这是根据国家合作研究基础设施战略(NCRIS)建立的国家倡议。本文介绍了创建跨司法管辖区研究基础设施并将州和地区链接聚合到单个链接“地图”中所需的流程和方法的开发。

方法

CDL 实施了一种链接模型,该模型结合了数据链接的最佳实践,并遵守澳大利亚政府规定的数据集成原则。CDL 与数据保管人和州级数据链接设施密切合作,设计并实施了一个链接系统,以支持国家或跨司法管辖区的研究。还建立了一个安全的运营环境,并制定了强有力的治理安排,以最大限度地保护数据的隐私和机密性。

结果

跨司法管辖区链接模型的开发和实施克服了澳大利亚健康数据收集联邦性质相关的许多挑战。该基础设施扩展了澳大利亚的数据链接能力,并为人口水平的研究提供了机会。介绍了 CDL 链接模型、基础设施架构和治理安排。通过进行第一个 PHRN 概念验证协作项目的数据链接,证明了新基础设施的质量和能力,成功链接了超过 2500 万条记录,达到了非常高的质量。

结论

该基础设施为研究人员和政策制定者提供了跨越司法管辖区边界进行基于链接的研究的能力。它代表了澳大利亚国家数据链接能力的进步,并为政府与研究机构的更紧密合作奠定了基础。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/cf7f/3579698/8ab981126c55/1472-6963-12-480-1.jpg

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