TY - JOUR
T1 - Development and implementation of a national online application system for cross-jurisdictional linked data
AU - Wray, Natalie
AU - Miller, Kate
AU - Irvine, Katie
AU - Moore, Elizabeth
AU - Crisp, Alice
AU - Bapaume, Kathleen
AU - Taylor, Catherine
AU - Smetak, Rob
AU - Wiggins, Nadine
AU - Dombrovskaya, Mikhalina
AU - Flack, Felicity
PY - 2022
Y1 - 2022
N2 - 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.
AB - 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.
KW - application
KW - approval
KW - cross-jurisdictional
KW - linked data
UR - http://www.scopus.com/inward/record.url?scp=85129369619&partnerID=8YFLogxK
U2 - 10.23889/ijpds.v6i1.1732
DO - 10.23889/ijpds.v6i1.1732
M3 - Article
C2 - 35520098
AN - SCOPUS:85129369619
SN - 2399-4908
VL - 7
SP - 1732
JO - International Journal of Population Data Science
JF - International Journal of Population Data Science
IS - 1
ER -