Georgina Jepsen1, Jacqueline Rek1
1Australian Institute Of Health And Welfare, , Australia
Biography:
The Australian Institute of Health and Welfare is an independent statutory Australian Government agency with more than 30 years of experience working with health and welfare data. The AIHW’s role is to provide meaningful information and statistics for the benefit of the Australian people.
The AIHW is data custodian of authoritative data on mothers and the characteristics and outcomes of their babies.
The AIHW is working to establish the National Newborn hearing Screening National Best Endeavours Dataset (NBEDS). This national data collection aims to build the evidence on pathways and outcomes for newborns with hearing loss.
Abstract
Permanent hearing loss is reported to affect approximately 1 to 2 babies per 1,000 births in Australia. There is national consensus that all eligible babies in Australia should be screened for hearing loss. Early screening, diagnosis and appropriate intervention has been shown to lead to significantly improved outcomes across multiple domains of functioning.
As a result, all states and territories in Australia have universal neonatal hearing screening programs to detect children with hearing loss at the earliest possible age. However, there is currently no standardised national data collection to support the measurement of screening delivery and outcomes from these programs.
The Australian Institute of Health and Welfare (AIHW) has been funded by the Department of Health and Aged Care to work collaboratively with state and territory departments responsible for newborn hearing screening to develop nationally consistent data items. This work will enable a national newborn hearing screening data collection.
The purpose of this presentation is to share the data development work that has been undertaken to progress the newborn hearing screening national best endeavours data set (NBEDS). Potential future development to better understand the patient journey, including data collection on risk factors, assessment and intervention are explored.