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released: 20 Nov 2014 author: AIHW

This information paper outlines the processes undertaken towards establishing the National Early Childhood Development Researchable Data Set. This data set aims to link health and education data, using both jurisdictional and national data sources, which would provide a valuable resource to researchers and policy-makers. The paper documents the privacy, legislative and data custodianship and supply hurdles encountered during the initial stages of establishing this data set. The paper concludes with a pragmatic approach for the next steps and way forward.

ISBN 978-1-74249-628-3; Cat. no. PHE 179; 71pp.; $13

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Publication table of contents

  • Preliminary material
    • Title and verso pages
    • Contents
    • Acknowledgments
    • Abbreviations
    • Summary
  • Body section
  • 1 Introduction
    • 1.1 Background
    • 1.2 Policy context
    • 1.3 National agenda for data linkage
    • 1.4 Related data linkage projects
      • Building national linkage capability to the AEDC project
      • Proof of Concept project 3
      • Transforming Education and Training Information in Australia
      • National Education Data Linkage Roadmap
    • 1.5 Structure of this report
  • 2 The National Early Childhood Development Researchable Data Set
    • 2.1 Aim, value and benefits
      • Aim of the NECD RDS
      • Benefits to governments, policy makers and program developers
      • Benefits to the public
      • Questions that the NECD RDS may help answer
    • 2.2 Scope and design
      • Research foundations of the NECD RDS
      • Data to be included
      • Documenting available data
    • 2.3 Data linkage
      • Practice and protocols
      • Protecting privacy
  • 3 Governance framework for the researchable data set
    • 3.1 Privacy considerations
      • AIHW legislative framework-privacy and confidentiality
    • 3.2 Ethical considerations
      • Human Research Ethics Committees
      • AIHW Ethics Committee
    • 3.3 Stakeholder engagement
    • 3.4 NECD RDS Advisory Committee
  • 4 Challenges and progress in establishing the researchable data set
    • 4.1 Challenges encountered
      • Stakeholder engagement
      • Jurisdictional linkage capabilities
      • Ongoing nature of the NECD RDS
      • Changes to process for generating linkage keys
      • Privacy constraints for preschool data
      • Incomplete data
      • Barriers to obtaining data
      • Other data linkage projects
    • 4.2 Obtaining permission to use data for the NECD RDS
      • Commonwealth data sets
      • Jurisdictional data sets
      • Summary of progress
      • Receiving data for inclusion in the NECD RDS
      • Supply and updating of data
  • 5 Moving forward
    • 5.1 Where are we now?
    • 5.2 Next steps
    • 5.3 After the NECD RDS is established
      • Stakeholder consultations and meetings
      • Access to the NECD RDS
      • Updating the NECD RDS
      • Data analysis
      • METeOR
  • End matter
    • Appendixes
      • Appendix A: Childhood development research
        • A.1 The review process
        • A.2 Results of mapping
      • Appendix B: Data sources to support the NECD RDS
        • B.1 Data included in the NECD RDS
        • B.2 Data to support the NECD RDS
      • Appendix C: Data items for inclusion
      • Appendix D: Processes to construct the NECD RDS
        • D.1 Linking data to construct the NECD RDS
        • D.2 Merging content data for the NECD RDS
      • Appendix E: Guide for researchers
        • E.1 Access to data for researchers
        • E.2 Access options
        • E.3 AIHW contact details
    • Glossary
    • References
    • List of tables
    • List of figures
    • List of boxes

Recommended citation

AIHW 2014. Developing the National Early Childhood Development Researchable Data Set. Cat. no. PHE 179. Canberra: AIHW.

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