Summary
All Australian states and territories have universal neonatal hearing screening programs. However, there is no standardised national data collection to support the measuring of screening delivery and outcomes from these programs.
The aim of this report is to describe current neonatal hearing screening data collections and/or practices across states and territories, and the environment for establishing a national data collection.
A national data collection is an agreed set of specifications to collect data for a particular purpose. An Australian national data collection for neonatal hearing screening would improve the availability and quality of data, allowing for consistent measurement, reporting, and benchmarking for programs and outcomes nationally and internationally.
To build a successful national data collection, consistency and standardisation in data collection methods and agreed definitions are required. While there are challenges arising from differences in program practices and data collection across the states and territories, there is an opportunity to develop a national neonatal hearing screening data collection that would, initially, collate data on demographics and hearing screening for all liveborn babies, and could be built upon further to include data items on diagnostic audiological assessment, identifiers (to aid data linkage), early intervention, and risk factors. Stakeholders, including representatives from all states and territories, should be engaged to develop and work towards consistent national data standards.
The AIHW is well positioned to govern a national data collection on neonatal hearing screening and welcomes the opportunity to play a key role in developing, collating, validating, analysing, and reporting neonatal hearing screening data as part of a national data collection.
About this report
Executive summary
1. Introduction
- A national framework
- National performance indicators
- The lack of national data
- Purpose and scope of this report
2. Scoping the feasibility of a national neonatal hearing screening data collection
- What is a national data collection?
- Project methodology
3. Findings
- State and territory neonatal hearing screening programs
- Analysis of currently available neonatal hearing screening data from states and territories
- Methodology
- Coverage
- Identifiers and demographics
- Screening
- Audiological assessment
- Early intervention
4. Considerations and recommendations for a national data collection
- Scope of a national data collection
- Data development
- Data governance
- States and territories
- Advisory committee
- The National Health Data and Information Standards Committee
- Ethics
- Data supply models for national data collection
- Submission of an annual data file
- Secure electronic data collection tool
- Reporting
- Data Linkage
- Additional considerations
5. Recommendations and next steps
- Recommendations
- Next steps
End matter: Acronyms; References
Appendix A: Findings on state and territory neonatal hearing screening programs
- New South Wales
- Victoria
- Queensland
- Western Australia
- South Australia
- Tasmania
- Australian Capital Territory
- Northern Territory
Appendix B: Data items requested for analysis