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released: 15 Jul 2004 author: Community Services Ministers' Advisory Council

This report is the outcome of a major project conducted by the National Community Services Information Management Group with the financial support of the Community Services Ministers' Advisory Council. The potential benefits of statistical linkage for policy, research and planning purposes are of increasing interest across jurisdictions and in the health and community services sectors. The report raises key issues for wider consideration and discussion concerning the appropriate conduct of statistical linkage projects using community services data and the appropriate mechanisms for the protection of individual privacy.

ISBN 978 1 74024 211 0; Cat. no. AIHW 10021; 102pp.; INTERNET ONLY

Full publication

Publication table of contents

  • Preliminary material (102K PDF)
    • List of tables
    • List of figures
    • Preface and Acknowledgments
    • Executive summary
    • Background
    • Main findings and recommendations
    • Framework for data linkage
    • Statistical linkage methods
    • Privacy and legal considerations
    • Engagement with the community
    • Coordination with the health sector
  • Sections
    1. Introduction (304K PDF)
      1. Project administration
      2. Project rationale
      3. Objective of the report
    2. Data linkage methods
      1. Purposes of data linkage
        1. Linkage for client management purposes
        2. Linkage for statistical, research and policy purposes
        3. Comparison of linkage for client management and statistical research
      2. Applications of 'statistically' linked data
      3. Benefits of statistical linkage
        1. Folate and neural tube defects
        2. IVF and birth defects
        3. Sudden infant death syndrome
        4. Cerebral palsy
    3. Methods of statistical linkage
      1. Deterministic methodology
      2. Probabilistic methodology
      3. Statistical linkage keys
        1. Source of the SLK
        2. Effect of the source of the SLK
        3. Statistical linkage keys as identifiers
    4. Statistical linkage in the health sector
      1. HealthConnect
      2. Unique patient identifiers draft business rules
      3. Western Australia diabetes linkage project
    5. Statistical linkage in the community services sector
      1. Community services sector environment
      2. Existing use of SLKs in the community services sector
        1. Home and Community Care (HACC) linkage key
        2. Supported Accommodation Assistance Program (SAAP) linkage key
        3. Commonwealth and State Disability Agreement (CSDA) linkage key
        4. Reconnect program linkage key
      3. Measures of the effectiveness of existing linkage keys
        1. Scope of the comparative study
        2. Summary of results
        3. Conclusions
    6. Privacy and legal considerations
      1. HACC linkage key experience
      2. Role of the Office of the Federal Privacy Commissioner
      3. Legal pro forma response from SLKWG members
      4. Legislative issues
        1. Legislative privacy protection
        2. Commonwealth Privacy Act 1988
        3. Use of personal information to participate in a statistical linkage project
        4. Does the Privacy Act 1988 relate to statistical linkage projects?
        5. Agency-specific protocols
        6. Privacy Amendment (Private Sector) Act 2000
        7. Health privacy guidelines
        8. Data-matching guidelines
      5. Privacy issues
        1. Personal privacy issues
        2. Control of information and data
        3. Security issues
        4. Consumer consultation
    7. Draft protocol for statistical linkage key research
      1. Scope of the protocol
      2. Example of an existing statistical linkage process
      3. Proposed statistical linkage research protocol
        1. Pre-linkage phase
        2. Statistical linkage of data
        3. Post-linkage phase (research applications)
      4. Assumptions and issues relating to the proposed protocol
        1. Focus of the proposed protocol
        2. Type of statistical linkage projects
        3. Proposed encryption algorithm
        4. Return of linked data to source agencies
        5. Type of 'data custodian'
        6. Staff training and development needs
        7. What is the 'best' SLK to use?
    8. Recommendations
      1. Framework for data linkage
      2. Statistical linkage methods
      3. Privacy and legal considerations
      4. Engagement with the community
      5. Coordination with the health sector
  • End matter
    • References (161K PDF)
    • Appendixes
      • APPENDIX A: Statistical linkage key Working Group membership
      • APPENDIX B: Measure of the effectiveness of statistical linkage keys
      • APPENDIX C: WA Diabetes Project Protocol
      • APPENDIX D: Related legislation on health and privacy
      • APPENDIX E: Draft Linkage Documentation
    • Abbreviations

Recommended citation

Community Services Ministers' Advisory Council 2004. Statistical data linkage in community services data collections. Cat. no. AIHW 10021. Canberra: AIHW. Viewed 12 June 2013 <http://www.aihw.gov.au/publication-detail/?id=6442467611>.