Identifying the gaps in hearing health data

Australian children born deaf or hard of hearing benefit from early access to universal newborn hearing screening (UNHS), timely diagnosis, assistive devices, early intervention, and medical care.

Yet, despite these services, there is currently no system in place to monitor individual or population-level progress, nor is there a system to consistently document children’s hearing, health, or support needs.

This gap makes it difficult to understand long-term outcomes, identify areas for improvement, and ensure every child receives the support they need to thrive.

There is an urgent need to systematically capture data to:

• Evaluate whether government investments in UNHS and early hearing interventions are delivering improved outcomes.
• Reduce inequities in service access, particularly for Aboriginal and Torres Strait Islander children and other vulnerable groups, so that no deaf or hard of hearing (DHH) child is left behind.
• Monitor the outcomes of ad-hoc postnatal hearing screenings, in line with recent recommendations from the World Health Organization (WHO).

About our research

Our vision is to give all deaf and hard of hearing children the best opportunities to reach their full potential and live healthy, fulfilled lives.

Our mission is to collect and connect child hearing health information into a national data system and research platform to drive better care.

Our aim is to develop the prerequisites for a database for DHH children aged zero to 18 years, including Aboriginal and Torres Strait Islander and children from culturally and linguistically diverse (CALD) backgrounds in Victoria and Queensland.

We see this initiative as a prototype with the potential to scale nationally.

Our key objectives

• Map and understand Australia’s hearing services and existing datasets.
• Integrate datasets into a single system, starting with Victoria and Queensland.
• Establish a national Core Outcomes Set to track what truly matters to children, families, and service providers.
• Assess the costs and benefits of building and sustaining ANCHOR.
• Explore critical research questions to inform future policy and practice.

Key research questions

• Do children with UNHS-detected mild or unilateral hearing loss benefit from amplification or early intervention?
• Should we re-screen for hearing loss later in childhood?
• Can we achieve outcomes equity, especially in Aboriginal and Torres Strait Islander and CALD settings?
• What outcomes matter to Australian children, families, services, and funding agencies?
• Is a whole-population data system possible?
  
  

Contact us

ANCHOR Study
Murdoch Children's Research Institute
The Royal Children's Hospital
50 Flemington Road
Parkville VIC 3052
Australia

Associate Professor Valerie Sung
Co-Group Leader and Principal Research Fellow
Phone: show phone number
Email:  show email address

How Australian child hearing health stakeholders are involved in ANCHOR

Exploring what outcomes matter

We all want our children and young people to reach their full potential, but what does that mean for young people who are deaf or hard of hearing and their families?

Working with families and stakeholders, the ANCHOR team is developing a Core Outcomes Set relevant to Australia (Aim 3).

This work involves talking to DHH communities around the country, including parents and carers, young people, Auslan users and Aboriginal and Torres Strait Islander families.

Through a series of focus groups, interviews, surveys and workshops we have identified outcomes that families, young people and hearing health professionals consider to be most important.

Mapping Australia’s services, supports and databases for deaf and hard of hearing children

We invited a representative from every organisation offering services or support to deaf and hard of hearing children up to 18 years of age in Australia to complete a survey (Aim 1).

This included organisations offering hearing screening and diagnosis, hearing rehabilitation, early intervention, Aboriginal and Torres Strait Islander health, allied health, education, parent support, deaf advocacy, maternal and child health services, and research registries or longitudinal databanks.

The primary objective of this survey was to describe existing services, supports, databases and outcome measures for deaf and hard of hearing children across Australia.

This survey has now closed, with a report to be distributed in early 2026.

ANCHOR Advisory Group

Since its inception, ANCHOR has held regular six-monthly meetings with members of its Advisory Group.

These meetings have been instrumental in raising awareness, distributing surveys, engaging with community members, and contributing to the development of a national Core Outcomes Set.

All meetings are conducted via Zoom and include Auslan interpreters and live captions to ensure accessibility.

We are not currently recruiting new members for the Advisory Group.

Australian Childhood Deafness Research – Community Advisory Group (AusChildDeafness-CAG)

Together with families, we have established an Australian Research for Childhood Deafness – Community Advisory Group (AusChildDeafness-CAG), the first of its kind in Australia.

The aim of this group is to strengthen partnerships between families and researchers working in childhood deafness around Australia and ensure the voices of those with lived experience are being valued and heard.

The AusChildDeafness-CAG is not currently recruiting new members.

Find out more about the AusChildDeafness-CAG.

Research team

Co-group leader - Prevention Innovation
Associate Professor Valerie Sung

Funding

This work is funded by the National Health and Medical Research Council (NHMRC) – Targeted Call for Research into Hearing Health 2021: Evidence-based support services “Building on newborn hearing screening success: towards national standards & data management”.

The Deafness Forum provides support to the AusChildDeafness Community Advisory Group.

Publications

Sung, V., Smith, L., Elliott, K. et al. Study protocol - the Australian National Child hearing Health Outcomes Registry (ANCHOR): collecting and connecting national data into a child deafness Learning Health System. BMC Health Serv Res 26, 502 (2026). 

Lucy Macpherson, Kayla Elliott, Jermy Pang et al. What’s happening with my child’s data?: Perspectives from parents of children who are deaf or hard of hearing, 13 November 2025, PREPRINT (Version 1) available at Research Square

Jing Wang, Whitney Zi-Yang Qian, Libby Smith et al. Exploring the categorisation of Hearing Loss across Australia’s hearing health services, 16 April 2026, PREPRINT (Version 2) available at Research Square.

Wang J, Qian W, Smith L, Bond V, Elliott K, Deutscher E, Gillespie A, Poulakis Z, Beswick R, McHugh L, Leigh G, McMahon C, Iseli C, Kong K, The ANCHOR Collaborative, Sung V. Environmental scan of hearing health services and databases in Australia: barriers and enablers for a national learning health system. PREPRINT. 2026. 10.25374/MCRI.31419050

Media

ANCHOR wins 2025 People’s Choice Poster Prize (The Health Advocate, May 2025, pgs 10-12).