Submission on proposed data collection approach and content for the census

We recommend that Stats NZ explicitly consider mechanisms to identify people living with a rare disorder through the census, using both administrative data and the new annual survey.

In coming years, national health datasets are expected to routinely collect rare disorder diagnosis information through the expanded embedding of SNOMED coding across Health New Zealand and primary care. However, health sector datasets cannot capture the broader social determinants of wellbeing for people living with rare disorders, including housing, education, employment, income, and caring responsibilities.

We encourage consideration of how information about people living with a rare disorder can be linked to existing health and social sector datasets, enabling population-level visibility of people living with rare disorders and their social, economic, and wellbeing outcomes over time.

Read the full submission here.