This supplementary privacy impact assessment (PIA) addresses privacy considerations specific to Autism NZ Early Years Support Pathway data integration into the Integrated Data Infrastructure (IDI). It should be read alongside the overarching Privacy impact assessment for the Integrated Data Service (PIA for IDS), which provides a comprehensive assessment of privacy and related risks. This document focuses only on aspects unique to this data ingestion that are not covered in the PIA for IDS.
Download the document below, or read the summary online.
Summary
Stats NZ collects the Early Years Support Pathway data from Autism NZ by agreement under section 22(c)(i) of the Data and Statistics Act 2022 for the purpose of research under Part 5 of the Data and Statistics Act 2022.
After collection, Stats NZ integrates the Early Years Support Pathway data into the IDI. Once integrated, Stats NZ governs access to the data for research purposes according to Part 5 of the Data and Statistics Act 2022.
After collection, as the data has been collected from an individual or organisation under section 22(c)(i) of the Data and Statistics Act 2022 for research purposes, Stats NZ cannot use the data for the production of official statistics unless the Minister of Statistics approves or Autism NZ agrees to the use of the data for that purpose, in writing, according to section 47(2) of the Data and Statistics Act 2022.
The Early Years Support Pathway data contains information about clients enrolled in the Early Years Support Pathway funded by the Social Investment Agency: autistic tamariki or tamariki showing signs of autism, between the ages of 18 months to 6 years.
The data had been collected from, or contained information about, approximately 200 tamariki or individuals when we established the data collection. Subsequent collections of this data have been collected from, or contain information about, on top of the original 200 individuals, approximately 50 new individuals a year.
To uphold privacy protections for tamariki (children), the supplier requires all parents/guardians/ whānau to complete a consent form at the point of collection. This ensures:
- personal and health information is collected only for service delivery and statistical purposes, and is stored securely
- while Autism NZ staff primarily access personal and health information for service delivery, some limited data is also shared with Stats NZ for integration into the Integrated Data Infrastructure (IDI). This sharing is done under strict privacy and security protocols. Before any analysis, the data is de-identified (personal details are removed after matching) so tamariki (children) cannot be identified in research or evaluation outputs. Autism NZ uses the information directly for services, and Stats NZ uses only de-identified data for research purposes
- individuals retain rights to access and correct their information and may withdraw consent at any time.
Prior to the agreed upon supply and integration date, Stats NZ collects an initial version of the data for testing that the data will conform to the data and data quality requirements. Once that initial data had been successful tested, if not integrated, Stats NZ will destroy the initial data.
Stats NZ collects this data four times a year.
Full information, including security considerations, can be found in the Privacy impact assessment for the Integrated Data Service.
In future, if Stats NZ wishes to access and use the data:
- for the production of official statistics, Stats NZ must update this supplementary PIA to reflect that change of purpose
- outside of the Integrated Data Service, Stats NZ must complete a separate PIA.
ISBN 978-1-991307-98-9
