ANCHOR: Australian National Child Hearing Health Outcomes Registry
- Project status: Active
Research area: The Centre for Community Child Health > Prevention Innovation
Australian National Child Hearing Health Outcomes Registry
Building on newborn hearing screening success: towards national standards & data management.
Photograph taken by Kieren Topp.
Building on newborn hearing screening success: towards national standards & data management.
Photograph taken by Kieren Topp.
Building on newborn hearing screening success: towards national standards & data management.
Photograph taken by Kieren Topp.
Overview
Australian children who are born deaf or hard of hearing can have early access to established universal newborn hearing screening (UNHS), diagnosis, device provision, early intervention and medical services.
However, there is no mechanism to measure progress and track outcomes on an individual or population level, nor is there a system to document hearing, health or support needs for children. There is an urgent need to systematically capture data to
- Ensure the government’s current investments into UNHS and child hearing health interventions are improving outcomes.
- Address inequity in service access, particularly Aboriginal and Torres Strait Islander and vulnerable children, to ensure no deaf or hard of hearing (DHH) child ‘slips through the cracks’.
- Track outcomes of adhoc postnatal screening, responding to the World Health Organization’s recent recommendations.
Our vision is to connect and utilise hearing health information to drive research and service delivery to give all deaf and hard of hearing children the best opportunities to reach their full potentials.
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, as a prototype that can be rolled out nationally. Specifically, we intend to:
- Find out about Australia’s hearing services and datasets.
- Join datasets into a single system (starting in Victoria and Queensland).
- Develop a national Core Outcomes Set to measure what matters to Australian children, families and services.
- Evaluate the costs and benefits of developing and maintaining ANCHOR.
- Begin to address key research questions.
Key research questions
- Do children with UNHS-detected mild or unilateral hearing losses 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?
How Australian child hearing health stakeholders can be involved in ANCHOR
Help us explore 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 will develop a Core Outcomes Set relevant to Australia (Aim 3). This work will involve 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 will identify which outcomes matter to families, young people and services.
Mapping Australia’s services, supports and databases for deaf and hard of hearing children
We invite 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 includes 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 is to describe existing services, supports, databases and outcome measures for deaf and hard of hearing children across Australia.
If your organisation has not yet contributed, please register your interest.
Join the Advisory Group
Attend six-monthly meetings, spread the word, distribute surveys, approach community members and participate in a consensus meeting on the development of a national Core Outcomes Set. Meetings will be held via Zoom, with Auslan interpreters and live captions.
If you are interested in joining the Advisory Group, please register your interest.
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.
Read more about the AusChildDeafness-CAG.
Research team
Team leader - Prevention Innovation
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”.
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
Team Leader/Clinician-Scientist Fellow
Phone: show phone number
Email:
show email address