What’s happening with my child’s data?: Perspectives from parents of children who are deaf or hard of hearing

Data collection is a critical mechanism by which researchers and health professionals gain insight into the needs and experiences of children who are deaf or hard of hearing (DHH). As data linkage initiatives, such as the Australian National Child Hearing Health Outcomes Registry (Sung et al., 2025), begin integrating information across services, understanding caregiver perspectives is essential to ensure trust, relevance and meaningful participation. This study explored how parents perceive the collection/use of their child’s data. Using a national recruitment strategy, parents of children who are DHH were invited to participate in focus groups or interviews to discuss outcomes that matter to them, and their views on data collection, with 22 parents contributing their perspectives. Interview transcripts were analysed using Inductive Content Analysis, identifying seven overarching content categories: 1. Feelings about collection of information about their child and family by hearing health services; 2. Reasons for providing data; 3. Knowledge of data collection processes; 4. Relevance of the data being collected; 5. Concerns about privacy and security; 6. The role of data in guiding funding and programs; and 7. Opportunities for improvements and future directions. Parents expressed diverse perspectives on data collection practices. Many recognised the potential benefits of data for improving services and outcomes, but also highlighted gaps in communication, transparency, and opportunities for family input. Parents strongly valued being consulted about what information is most meaningful to collect and emphasised that better engagement with families could enhance data relevance and maximise the benefits for children and their communities.