The vision of the Australian National Child Hearing Health Outcomes Registry (ANCHOR) is to give all deaf and hard of hearing children the best opportunities to reach their full potential and live healthy, fulfilled lives. ANCHOR’s mission is to collect and connect child hearing health information into a national data system to drive service improvements, creating an enduring Learning Health System and pipeline for research discoveries that single studies cannot address alone. ANCHOR’s Phase One (2023-2025) program aims to establish the prerequisites of a national database, through:
- Environmental scanning of Australia’s child hearing health services and datasets;
- Developing a prototype data system spanning two states;
- Establishing a national Core Outcomes Set to ensure ANCHOR measures what matters to children, families and services; and
- Estimating costs and benefits of ANCHOR.
ANCHOR’s Phase One program is realising its aims by extensive engagement with families and young people with lived experience, their communities, and >100 child deafness stakeholders from >49 organisations delivering >300 services across >15 disciplines, representing all states and territories of Australia, including Aboriginal and Torres Strait Islander and Deaf communities. We established the parent-led Australian Childhood Deafness Research Community Advisory Group (AusChildDeafness-CAG), to ensure families with lived experience are co-designing ANCHOR, and are at the heart of developing a data resource that reflects the needs of children and young people who are deaf and hard of hearing and their families. This is paving way to future successful implementation of ANCHOR (Phase Two) beyond 2026.
