Addressing the challenges of cross-jurisdictional data linkage between a national clinical quality registry and government-held health data

Nadine Andrew, Vijaya Sundararajan, Amanda Thrift, Monique Kilkenny, Judith Katzenellenbogen, Felicity Flack, Melina Gattellari, James Boyd, Philip R. Anderson, Brenda Grabsch, Natasha Lannin, Trisha Johnston, Ying Cheng, Dominique Cadilhac

Research output: Contribution to journalArticle

14 Citations (Scopus)

Abstract

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. Conclusion: 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.
Original languageEnglish
Pages (from-to)436-442
Number of pages7
JournalAustralian and New Zealand Journal of Public Health
Volume40
Issue number5
DOIs
Publication statusPublished - 2016

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Information Storage and Retrieval
Registries
Health
Health Communication
State Hospitals
Group Processes
Ownership
Hospital Mortality
Ethics
Public Health
Stroke
Education

Cite this

Andrew, Nadine ; Sundararajan, Vijaya ; Thrift, Amanda ; Kilkenny, Monique ; Katzenellenbogen, Judith ; Flack, Felicity ; Gattellari, Melina ; Boyd, James ; Anderson, Philip R. ; Grabsch, Brenda ; Lannin, Natasha ; Johnston, Trisha ; Cheng, Ying ; Cadilhac, Dominique. / Addressing the challenges of cross-jurisdictional data linkage between a national clinical quality registry and government-held health data. In: Australian and New Zealand Journal of Public Health. 2016 ; Vol. 40, No. 5. pp. 436-442.
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Andrew, N, Sundararajan, V, Thrift, A, Kilkenny, M, Katzenellenbogen, J, Flack, F, Gattellari, M, Boyd, J, Anderson, PR, Grabsch, B, Lannin, N, Johnston, T, Cheng, Y & Cadilhac, D 2016, 'Addressing the challenges of cross-jurisdictional data linkage between a national clinical quality registry and government-held health data', Australian and New Zealand Journal of Public Health, vol. 40, no. 5, pp. 436-442. https://doi.org/10.1111/1753-6405.12576

Addressing the challenges of cross-jurisdictional data linkage between a national clinical quality registry and government-held health data. / Andrew, Nadine; Sundararajan, Vijaya; Thrift, Amanda; Kilkenny, Monique; Katzenellenbogen, Judith; Flack, Felicity; Gattellari, Melina; Boyd, James; Anderson, Philip R.; Grabsch, Brenda; Lannin, Natasha; Johnston, Trisha; Cheng, Ying; Cadilhac, Dominique.

In: Australian and New Zealand Journal of Public Health, Vol. 40, No. 5, 2016, p. 436-442.

Research output: Contribution to journalArticle

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T1 - Addressing the challenges of cross-jurisdictional data linkage between a national clinical quality registry and government-held health data

AU - Andrew, Nadine

AU - Sundararajan, Vijaya

AU - Thrift, Amanda

AU - Kilkenny, Monique

AU - Katzenellenbogen, Judith

AU - Flack, Felicity

AU - Gattellari, Melina

AU - Boyd, James

AU - Anderson, Philip R.

AU - Grabsch, Brenda

AU - Lannin, Natasha

AU - Johnston, Trisha

AU - Cheng, Ying

AU - Cadilhac, Dominique

PY - 2016

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N2 - 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. Conclusion: 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.

AB - 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. Conclusion: 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.

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