Cross-jurisdiction data linkage Challenges and opportunities Dr Merran Smith CEO, Population Health Research Network SANT DataLink Research Conversations,

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Presentation transcript:

Cross-jurisdiction data linkage Challenges and opportunities Dr Merran Smith CEO, Population Health Research Network SANT DataLink Research Conversations, Adelaide, 4 December 2014

Overview  Overview of PHRN  Experience with cross- jurisdiction data linkage  Opportunities and advice

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

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

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

 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

 Facilities to link and provide access to linked data within and between jurisdictions Data linkage infrastructure

Linked data assets  Australia’s linked data assets are internationally recognised  Details of available linked data can be found on the PHRN website

Cross-jurisdiction (XJ) data linkage

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

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

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

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

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

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.

Opportunities and advice

Opportunities Approvals  Standardise application forms (Online Application System)  Mutual recognition by ethics committees  Indicative timeline targets for custodian approval

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

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

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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