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Cross-jurisdiction data linkage Challenges and opportunities Dr Merran Smith CEO, Population Health Research Network SANT DataLink Research Conversations, Adelaide, 4 December 2014
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Overview Overview of PHRN Experience with cross- jurisdiction data linkage Opportunities and advice
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CRADLE Birth Records States/Territories GP Records C’wlth Hospital Records States/Territories PBS Records C’wlth Veterans’ Affairs/ Aged care C’wlth Death Records States/Territories Cancer Registries States/Territories GRAVE Health data collection
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Data linkage models States/territories use an enduring links model Linkage variables used to create dynamic enduring linkage maps for each jurisdiction Project-specific research dataset created for each approved project The Commonwealth uses an Integrating Authorities create and destroy links model
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D ata linkage timelines 1995 Systematic population-based health data linkage began in WA 2006 WA helped NSW/ACT set up linkage 2009 PHRN funded to expand data linkage 2014DLUs operating for each jurisdiction and forcross-jurisdiction linkage
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PHRN funding from successive Commonwealth programs plus cash and in-kind from partners PHRN investment $ (GST Exclusive) Total ($M) Australian Government Cash$33.1 Co-investment Cash$12.0 In-kind$31.6 Total Investment (NCRIS, SSI, CRIS)* $76.7
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Facilities to link and provide access to linked data within and between jurisdictions Data linkage infrastructure
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Linked data assets Australia’s linked data assets are internationally recognised Details of available linked data can be found on the PHRN website
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Cross-jurisdiction (XJ) data linkage
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XJ data linkage Linkage between two or more states/ territories OR between C’wlth and one or more states/territories Cross-jurisdiction data linkage is important but difficult Several PHRN Proof of Concept (POC) collaborations have examined XJ data linkage
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Proof of Concept (POC) POCDescriptionStart date Status #1Hospital-related mortality NSW, Qld, SA, WA Linker: CDL 2010Complete. Publications in progress #2Burden of injury NSW, SA Linker: CDL 2012Linkage complete. Linked dataset assembled #4Childhood immunisation Cwlth, NSW, SA Linker: AIHW Access: SURE 2012Linkage complete. Linked dataset to be assembled January 2015 PHRN is using the POCs to identify and understand delays in provision of cross-jurisdiction linked data
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Three steps Three key steps in getting linked data: 1) Project approval 2) Data linkage and supply of project linkage keys 3) Extraction/release of linkable data
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Step 1: Approvals Ethics approval: jurisdiction and research institution; several approvals if data from several jurisdictions Custodian approval: several approvals if data from several custodians Data linkage unit: several approvals if project involves several DLUs
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Time for approval Time for project approval depends on: Number of jurisdictions Number of agencies Number of collections Number/type of variables PHRN POCs are complex. Project approvals took up to two years
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Approvals for POC#1 ElementNumber Jurisdictions4 Ethics committees5 Data custodians8 Data collections9 Linkage units4 PHRN POC#1 involved data from four states. It required numerous approvals.
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Opportunities and advice
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Opportunities Approvals Standardise application forms (Online Application System) Mutual recognition by ethics committees Indicative timeline targets for custodian approval
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Tips for XJ data linkage Keep requests simple eg limit number of jurisdictions, custodians and collections For C’wlth data: consider seeking consent; request MBS or PBS, not both Ask for help early and often Keep in touch with client services teams Expect (and plan for) delays
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Conclusion There can be lengthy delays in approval for XJ data linkage Timelines depend on a range of factors including project complexity Improvements are likely to be incremental
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Acknowledgements Australian Government National Collaborative Research Infrastructure Strategy 2013 and to SANT DataLink who funded attendance at this seminar PHRN Proof of Concept researchers, data custodians and linkers whose experiences are informing improvement in data linkage infrastructure in Australia
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For further information: www.phrn.org.au
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