Data linkage building the national infrastructure in Australia

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Population Health Research Network
Data linkage building the national
infrastructure in Australia Dr Merran
Smith WA Department of Health Second National
Symposium on Data Linkage Research Adelaide 20 -
21 October 2008
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Overview

• Background
• PHRN elements
• Current priorities
• Protocols/processes
• Risks and Benefits

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Background

• Considerable health data linkage experience in
  Australia
• Increasing interest nationally and
  internationally in use of linked data
• NCRIS research infrastructure funding opportunity

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Timeline

• 2006 NCRIS Strategic Roadmap
• 2007 Investment Plan
• 2008 Funding Agreement
• 2009 on Building the infrastructure

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Vision
Improved population health through seamless
supply of linked de-identified data for approved
research
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PHRN Focus

• Current focus on state and territory datasets
• Other datasets could be considered in future

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PHRN Elements

• Budget of 51.4 million
• - 20.0 million from DIISR
• - 31.4 million from states/territories
• Management Council
• Program Office
• Six state-based nodes
• Network Linkage Centre

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Priorities

• Governance processes
• access policies
• privacy, ethics and consumer engagement
• Establishing nodes
• Cross-node linkage
• Data supply system
• Proof of Concept collaboration(s)

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Privacy Preserving Protocols

• Data custodians provide demographic data from
  each record to linkers
• Linkage based on demographic data
• Linkers supply project-specific keys to
  custodians
• Custodians supply de-identified linkable data to
  researchers

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Data Linkage Preserves Privacy
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Data Access Process

• Application specifying data
• (year dataset data items)
• HREC approval
• Analyst undertakings
• Data release
• Project completion processes

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Some Risks

• Consumers and community are not engaged
• Privacy protocols are not followed
• Researchers do not have the analytic skills

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Benefits

• Expanded linked data resources
• Large de-identified datasets
• Internationally recognised infrastructure
• Cost-effective research
• Improved evidence-based care

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Health Data Linkage Locations
Scottish Record Linkage System
British Columbia Linked Health Database
Scandinavia
Oxford Record Linkage Study
Manitoba Centre for Health Policy
Rochester (the Mayo Clinic)
Population Health Research Network
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Summary

• Exciting new initiative
• Strong support from states and territories
• Robust governance processes
• Significant improvement to health research
  infrastructure in Australia

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• Any Questions ?