Summary

This report describes the processes undertaken from 2011-13 towards the development of an ongoing National Early Childhood Development Researchable Data Set (NECD RDS). This data set is intended to foster research across the sectors of early childhood development, education and care, health, and human services. The Australian Institute of Health and Welfare (AIHW) has documented the processes and protocols required to access and link multiple health and education data sets from jurisdictional and national data sources in order to develop an ongoing, linked national data set.

The main aim of the NECD RDS is to provide an evidence base on early childhood development in Australia by providing data on all children in Australia, including those who move between states and territories. The NECD RDS aims to contain data on large enough numbers of children to permit robust analyses of outcomes for particular population groups (such as Indigenous children or children from non-English speaking backgrounds), and to analyse the impacts of particular policies and programs within and between states and territories.

The development of this type of ongoing national linked data set in Australia is relatively new, and the processes for doing so are continuously evolving as new challenges are encountered. This report describes and discusses the complexities and barriers to obtaining data across health and education sectors, at both the national and jurisdictional levels. The AIHW gained further insight into the privacy and legislative constraints. These included the complexities of processes around ongoing receipt of data, how data could be made available to external researchers and how to navigate the multiplicity of approval processes for ethics committees and data custodians for both construction of the NECD RDS and for allowing subsequent access to government and non-government agencies and researchers.

The initial development of this data set revealed differences between jurisdictions, both in their data linkage capabilities and in the processes required to approve data release, including different ethics committee requirements. These issues can create barriers to obtaining cross-sectoral data-in this case, health and education data.

A researchable data set at national level provides a unique challenge for Australia, as well as many opportunities. A data set such as the NECD RDS has the potential to strengthen the evidence base for child development outcomes, allowing the development of sound policies and programs. It would also enhance the current efforts in extending data linkage networks at both jurisdiction and national levels, and ensure that Australia is at the forefront of research developments in this area.