A qualitative study of children, adolescents and their families in New Zealand has shown that consent processes for ongoing use of child health data require attention. The study included 24 Māori and non Māori across five focus groups, recruited from a community-based health service, and used a mixed Māori and non-Māori research team. Focus groups for children, adolescents and parents/caregivers were held separately. Three themes were identified: (1) I am more than a number: seeing patients as people; (2) In safe hands: data as power; and (3) What are your intentions with my data? Consent as an active relationship. The authors noted that a strong ethical and child rights-based approach to child health data management is needed to avoid the risk of exacerbating health inequities and experiences of breach of trust.
