N Z Med J. 2026 Jun 12;139(1636):102-109. doi: 10.26635/6965.7318.
ABSTRACT
Primary healthcare data can be used to conduct cost-effective research that improves understanding of population health and disease, leading to more effective prevention, earlier diagnosis, better-informed health models and improved health equity. However, Aotearoa New Zealand lacks a national primary healthcare data collection and has no national infrastructure to integrate and interrogate routinely collected primary healthcare data. This paper describes new technical approaches used internationally to improve researcher access to healthcare data and considers how this may be applied in the New Zealand context using Māori data governance and ethical data stewardship principles. Data access may be improved through platform-level, algorithm-level and data-level approaches. Māori data governance and ethical data stewardship principles can be applied to these new technical approaches. A governance model requires strict management, administration and oversight. An open-access model could provide easier access for researchers to develop and test models on synthetic data within a trusted research environment. Improving primary healthcare data access for research in New Zealand requires partnership that upholds Māori data governance principles and ethical research standards. Debate of the advantages and disadvantages of these technical approaches and stewardship models including patients and the public is welcomed.
PMID:42275661 | DOI:10.26635/6965.7318
