Addressing the challenges of cross-jurisdictional data linkage between a national clinical quality registry and government-held health data.
OBJECTIVE
To describe the challenges of obtaining state and nationally held data for linkage to a non-government national clinical registry.


METHODS
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.


RESULTS
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.


CONCLUSIONS
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.
Stroke & Ageing Research, School of Clinical Sciences at Monash Health, Monash University, Victoria. nadine.andrew@monash.edu.
Nadine E
NE
Andrew
Department of Medicine, St. Vincent's Hospital, Melbourne University, Victoria.
Vijaya
V
Sundararajan
Stroke & Ageing Research, School of Clinical Sciences at Monash Health, Monash University, Victoria.
Amanda G
AG
Thrift
Stroke & Ageing Research, School of Clinical Sciences at Monash Health, Monash University, Victoria.|Florey Institute of Neuroscience and Mental Health, Heidelberg, Victoria.
Monique F
MF
Kilkenny
Western Australian Centre for Rural Health, The University of Western Australia.|Telethon Kids Institute, The University of Western Australia.
Judith
J
Katzenellenbogen
Telethon Kids Institute, The University of Western Australia.
Felicity
F
Flack
South Western Sydney Clinical School, University of New South Wales.|Ingham Institute for Applied Medical Research, New South Wales.
Melina
M
Gattellari
Population Health Research Network Centre for Data Linkage, Centre for Population Health Research, Curtin University, Western Australia.
James H
JH
Boyd
Data Linkage Unit, Australian Institute of Health and Welfare, Australian Capital Territory.|Faculty of Health, University of Canberra, Australian Capital Territory.
Phil
P
Anderson
Florey Institute of Neuroscience and Mental Health, Heidelberg, Victoria.
Brenda
B
Grabsch
School of Allied Health, College of Science, Health and Engineering, La Trobe University, Victoria.
Natasha A
NA
Lannin
Health Statistics Branch, Queensland Department of Health.
Trisha
T
Johnston
Victorian Data Linkages, Department of Health and Human Services, Victoria.
Ying
Y
Chen
Stroke & Ageing Research, School of Clinical Sciences at Monash Health, Monash University, Victoria.|Florey Institute of Neuroscience and Mental Health, Heidelberg, Victoria.
Dominique A
DA
Cadilhac
D001315:Australia; D016208:Databases, Factual / Q000706:statistics & numerical data*; D006076:Government; D006801:Humans; D016247:Information Storage and Retrieval / Q000706:statistics & numerical data; D008498:Medical Record Linkage / Q000379:methods*; D009313:National Health Programs; D012042:Registries / Q000706:statistics & numerical data*; D020521:Stroke / Q000453:epidemiology*
clinical registry; data linkage; health data