Environmental scan of hearing health services and databases in Australia: barriers and enablers for a national child deafness Learning Health System
چکیده
OBJECTIVE: To conduct a national environmental scan of child hearing health-related services and databases as part of the Australian National Child Hearing Health Outcomes Registry program, and to identify system-level barriers and enablers to developing a coordinated Learning Health System for deaf and hard-of-hearing children. METHODS: A cross-sectional national survey of organisations providing hearing health-related services or managing data for Australian deaf and hard-of-hearing children. The survey examined the scope and practices related to data collection, standardisation, interoperability, stewardship, and governance. RESULTS: Ninety-nine respondents from 92 organisations delivering 290 services participated. The scan identified a disjointed data landscape. Standardised data were limited, with inconsistent capture of key variables across organisations and 49.4% rating their data quality as acceptable or good. Interoperability was constrained by heterogenous data practices, including use of multiple databases (34.3%), limited external reporting (24.2%) and lack of accessible data dictionaries (71.9%). Stewardship and data governance arrangements were variable, with fewer than half of organisations reporting formal consent (47.6%), privacy statements (51.2%) or ethics oversight (38.1%). Despite these challenges, 56.5 and 54.8% of organisations expressed interest in data linkage and research participation, indicating readiness for coordinated system development. CONCLUSION: Despite Australia's substantial investment in newborn hearing screening and hearing health-related services, fragmented data systems limit Australia's ability to monitor outcomes, equity and system performance in child hearing health. However, strong stakeholder interest in data linkage provides important momentum. These findings inform policy and service planning, and support staged development of a national child deafness Learning Health System through the Australian National Child Hearing Health Outcomes Registry.