Table of contents

  • Contents
    • Introduction 
    • Background
    • Privacy issues 
      • Principles for use of identified records
      • Principles for use of records containing statistical linkage keys
      • Principles for the use of unique patient identifiers
      • Principles for the use of encrypted unique patient identifiers
    • Appendix A 
      • Guidelines for the use of unique patient identifiers for data linkage
      • Minimisation of potentially identifying information
      • Supervision of the use of data
      • Data editing
      • Subsequent use and destruction of data sets 10
    • Appendix B
      • Model for cross-jurisdictional data linkage for medical research
      • Proposed approach
      • Linkage key file
      • Linked de-identified data
      • Ethics approval