The Australian National Childhood Hearing Health Outcomes Registry (ANCHOR)’s vision is to give deaf and hard of hearing children the best opportunities to reach their full potentials through connecting and using hearing health data to drive research and service improvement. ANCHOR is creating this through four major strategies, one of these being the development of a national child deafness Core Outcome Set (COS). A COS is an agreed minimum set of outcomes relevant to children and young people who are deaf or hard of hearing that should be measured and reported for research and clinical purposes. A COS improves the quality of information collected, informs progress and helps people make informed choices.
The ANCHOR project team invites young people and families of children who are deaf or hard of hearing to join us for an interactive workshop to discuss what outcomes matter most to them and help refine the outcomes that should be included and measured in a COS. We will present findings from our work so far and ask participants to rank outcomes according to what matters to them. Key learnings from this Parent and Family Workshop will be summarised and presented at the larger ANCHOR Outcomes Matter Workshop in the afternoon plenary session to ensure families’ voices are included in the final national COS.