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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...
Autores principales: | , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Swansea University
2022
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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. |
format | Online Article Text |
id | pubmed-9052959 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Swansea University |
record_format | MEDLINE/PubMed |
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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