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Development and implementation of a national online application system for cross-jurisdictional linked data

The Population Health Research Network (PHRN) is an Australian national data linkage infrastructure that links a wide range of health and human services data in privacy-preserving ways. The data linkage infrastructure enables researchers to apply for access to routinely collected, linked, administra...

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Autores principales: Wray, Natalie, Miller, Kate, Irvine, Katie, Moore, Elizabeth, Crisp, Alice, Bapaume, Kathleen, Taylor, Catherine, Smetak, Rob, Wiggins, Nadine, Dombrovskaya, Mikhalina, Flack, Felicity
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Swansea University 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9052959/
https://www.ncbi.nlm.nih.gov/pubmed/35520098
http://dx.doi.org/10.23889/ijpds.v7i1.1732
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author Wray, Natalie
Miller, Kate
Irvine, Katie
Moore, Elizabeth
Crisp, Alice
Bapaume, Kathleen
Taylor, Catherine
Smetak, Rob
Wiggins, Nadine
Dombrovskaya, Mikhalina
Flack, Felicity
author_facet Wray, Natalie
Miller, Kate
Irvine, Katie
Moore, Elizabeth
Crisp, Alice
Bapaume, Kathleen
Taylor, Catherine
Smetak, Rob
Wiggins, Nadine
Dombrovskaya, Mikhalina
Flack, Felicity
author_sort Wray, Natalie
collection PubMed
description The Population Health Research Network (PHRN) is an Australian national data linkage infrastructure that links a wide range of health and human services data in privacy-preserving ways. The data linkage infrastructure enables researchers to apply for access to routinely collected, linked, administrative data from the six states and two territories which make up the Commonwealth of Australia, as well as data collected by the Australian Government. The PHRN is a distributed network where data is collected and managed at the respective jurisdictional and/or cross-jurisdictional levels. As a result, access to linked data from multiple jurisdictions requires complex approval processes. This paper describes Australia’s approach to enabling access to linked data from multiple jurisdictions. It covers the identification of, and agreement to, a minimum set of data items to be included in a unified national application form, the development and implementation of a national online application system and the harmonisation of business processes for cross-jurisdictional research projects. Utilisation of the online application system and the ongoing challenges of data linkage across jurisdictions are discussed. Changes to the data custodian and ethics committee approval criteria were out of scope for this project.
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spelling pubmed-90529592022-05-04 Development and implementation of a national online application system for cross-jurisdictional linked data Wray, Natalie Miller, Kate Irvine, Katie Moore, Elizabeth Crisp, Alice Bapaume, Kathleen Taylor, Catherine Smetak, Rob Wiggins, Nadine Dombrovskaya, Mikhalina Flack, Felicity Int J Popul Data Sci Population Data Science The Population Health Research Network (PHRN) is an Australian national data linkage infrastructure that links a wide range of health and human services data in privacy-preserving ways. The data linkage infrastructure enables researchers to apply for access to routinely collected, linked, administrative data from the six states and two territories which make up the Commonwealth of Australia, as well as data collected by the Australian Government. The PHRN is a distributed network where data is collected and managed at the respective jurisdictional and/or cross-jurisdictional levels. As a result, access to linked data from multiple jurisdictions requires complex approval processes. This paper describes Australia’s approach to enabling access to linked data from multiple jurisdictions. It covers the identification of, and agreement to, a minimum set of data items to be included in a unified national application form, the development and implementation of a national online application system and the harmonisation of business processes for cross-jurisdictional research projects. Utilisation of the online application system and the ongoing challenges of data linkage across jurisdictions are discussed. Changes to the data custodian and ethics committee approval criteria were out of scope for this project. Swansea University 2022-04-27 /pmc/articles/PMC9052959/ /pubmed/35520098 http://dx.doi.org/10.23889/ijpds.v7i1.1732 Text en https://creativecommons.org/licenses/by-nc-nd/4.0/This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
spellingShingle Population Data Science
Wray, Natalie
Miller, Kate
Irvine, Katie
Moore, Elizabeth
Crisp, Alice
Bapaume, Kathleen
Taylor, Catherine
Smetak, Rob
Wiggins, Nadine
Dombrovskaya, Mikhalina
Flack, Felicity
Development and implementation of a national online application system for cross-jurisdictional linked data
title Development and implementation of a national online application system for cross-jurisdictional linked data
title_full Development and implementation of a national online application system for cross-jurisdictional linked data
title_fullStr Development and implementation of a national online application system for cross-jurisdictional linked data
title_full_unstemmed Development and implementation of a national online application system for cross-jurisdictional linked data
title_short Development and implementation of a national online application system for cross-jurisdictional linked data
title_sort development and implementation of a national online application system for cross-jurisdictional linked data
topic Population Data Science
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9052959/
https://www.ncbi.nlm.nih.gov/pubmed/35520098
http://dx.doi.org/10.23889/ijpds.v7i1.1732
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