Study protocol - the Australian National Child hearing Health Outcomes Registry (ANCHOR): collecting and connecting national data into a child deafness Learning Health System

Despite early identification of deafness through universal newborn hearing screening, deaf and hard of hearing children can still face inequitable challenges in their development and life opportunities. Large scale registries, collecting standardised information on all individuals in a population with the relevant condition, can reveal variations in practices, processes, and outcomes, and identify targets for improvement. For childhood deafness, where care delivery spans multiple service sectors, data linkage is the only feasible way to bring data together. Data linkage also minimises the burden and costs of data entry by service providers, increasing future sustainability of large-scale research datasets. The Australian National Child Hearing Health Outcomes Registry’s (ANCHOR) mission is to collect and connect child hearing health information into a Learning Health System to drive research and service delivery improvements. Its vision is to give all deaf and hard of hearing children the best opportunities to reach their full potential and live healthy, fulfilled lives. ANCHOR aims to (1) Map Australia’s child hearing services and datasets, and determine the costs of establishing and maintaining ANCHOR nationwide; (2) Create a single cross-state data system, starting with two states, as a blueprint for national extension; and (3) Develop a Core Outcome Set to measure what matters to children, young people, families, and services. ANCHOR brings together expertise in child hearing health, education, lived experience, and research, with community engagement as its guiding principle. ANCHOR will be a Learning Health System and national platform to facilitate population-based research for deaf and hard of hearing children. ANCHOR’s methodology, using community engagement at its heart, will also serve as a prototype for other health conditions using data linkages to sustainably capture large-scale data, to ensure data typically missing from vulnerable families can be included. Ultimately, ANCHOR will generate robust, actionable evidence to optimise service delivery models and equity of access for deaf and hard of hearing children and their families. This paper provides an overview of the established and evolving methodologies of the ANCHOR project to achieve its aims.