Canvassing the views of mothers of the GUINZ cohort about sharing data with Stats NZ and linkage to the IDI: 12-year data collection wave Te Rōpū Pīata Leading Light analysis.

Abstract

Background The Data Linkage Working Group (DLWG) was set up in 2018 to assess the feasibility of sharing the Growing Up in New Zealand (GUiNZ) data with Stats NZ for linkage to the Integrated Data Infrastructure (IDI). The purpose of this data sharing would be to add richness to the GUiNZ study by linking the GUiNZ data with many administrative datasets in the IDI and to provide wider access to researchers to analyse GUiNZ data. This idea was tested with GUiNZ Te Rōpū Pīata Leading Light (LL) pilot group as part of the 12DCW (a decision was made not to approach the main cohort in 12DCW). Approval to proceed with the 12DCW, including testing the data linkage proposal with the LL, was received from Health and Disability Ethics Committee on 25th May 2021. Aim The aim of this study was to get feedback from the mothers of children in the GUiNZ Te Rōpū Pīata Leading Light (LL) pilot group about the data sharing proposal. Methods Prior to the 12 Year Kōrero/Interview home visits in June/July 2021, mothers of the LL cohort participants were posted a Participant Information Sheet about the proposal to share their and their child’s GUiNZ data with Stats NZ for linkage with the IDI. During the home visit, they were asked to complete a questionnaire containing ten questions about their understanding of this proposal, how it made them feel about the study and a hypothetical question about whether they would or would not consent to share data, and why or why not.