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Title: Addressing the challenges of cross-jurisdictional data linkage between a national clinical quality registry and government-held health data.
Austin Authors: Andrew, Nadine E;Sundararajan, Vijaya;Thrift, Amanda G;Kilkenny, Monique F;Katzenellenbogen, Judith;Flack, Felicity;Gattellari, Melina;Boyd, James H;Anderson, Phil;Grabsch, Brenda;Lannin, Natasha A;Johnston, Trisha;Chen, Ying;Cadilhac, Dominique A
Affiliation: Stroke & Ageing Research, School of Clinical Sciences at Monash Health, Monash University, Victoria
Department of Medicine, St. Vincent's Hospital, Melbourne University, Victoria
Western Australian Centre for Rural Health, The University of Western Australia
Telethon Kids Institute, The University of Western Australia
South Western Sydney Clinical School, University of New South Wales
Ingham Institute for Applied Medical Research, New South Wales
Population Health Research Network Centre for Data Linkage, Centre for Population Health Research, Curtin University, Western Australia
Data Linkage Unit, Australian Institute of Health and Welfare, Australian Capital Territory
Faculty of Health, University of Canberra, Australian Capital Territory
Florey Institute of Neuroscience and Mental Health, Heidelberg, Victoria, Australia
School of Allied Health, College of Science, Health and Engineering, La Trobe University, Victoria
Health Statistics Branch, Queensland Department of Health
Victorian Data Linkages, Department of Health and Human Services, Victoria
Issue Date: Oct-2016 2016-09-13
Publication information: Australian and New Zealand journal of public health 2016; 40(5): 436-442
Abstract: To describe the challenges of obtaining state and nationally held data for linkage to a non-government national clinical registry. We reviewed processes negotiated to achieve linkage between the Australian Stroke Clinical Registry (AuSCR), the National Death Index, and state held hospital data. Minutes from working group meetings, national workshop meetings, and documented communications with health department staff were reviewed and summarised. Time from first application to receipt of data was more than two years for most state data-sets. Several challenges were unique to linkages involving identifiable data from a non-government clinical registry. Concerns about consent, the re-identification of data, duality of data custodian roles and data ownership were raised. Requirements involved the development of data flow methods, separating roles and multiple governance and ethics approvals. Approval to link death data presented the fewest barriers. To our knowledge, this is the first time in Australia that person-level data from a clinical quality registry has been linked to hospital and mortality data across multiple Australian jurisdictions. Implications for Public Health: The administrative load of obtaining linked data makes projects such as this burdensome but not impossible. An improved national centralised strategy for data linkage in Australia is urgently needed.
DOI: 10.1111/1753-6405.12576
ORCID: 0000-0001-8162-682X
Journal: Australian and New Zealand journal of public health
PubMed URL: 27625174
Type: Journal Article
Subjects: clinical registry
data linkage
health data
Appears in Collections:Journal articles

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