An international team of researchers from New Zealand, Australia and Canada has published governance guidelines for the use of Indigenous health data in the world's leading independent general medical journal The Lancet. The researchers hope the guidelines will encourage other researchers to work with Indigenous groups to build ethical and collaborative partnerships that will empower communities to advocate for better health and healthcare.
Professor Tahu Kukutai from the University of Waikato had significant input into the research and co-authored the article. She says Aotearoa has the potential to be a world leader in the trusted use of shared data to improve wellbeing but there are still large gaps when it comes to Māori data governance. “For Māori to truly benefit from the power of data, we need to have meaningful input in decision-making over what data are collected and how they are accessed and used.”
Jennifer Walker, scientist at the Institute for Clinical Evaluative Sciences (ICES) in Ontario and study lead says Indigenous communities need accurate data to measure determinants of health, access to health services, and the burden of important diseases and their complications. “But how and by whom this data is collected and counted needs to begin with the Indigenous communities,” she says.
The Lancet article, ‘Indigenous health data and the path to healing’, outlines data governance processes that should guide the use of routinely collected health data with Indigenous identifiers:
- Access to and use of data with Indigenous identifiers should be approved by data governance committees organised and populated by the relevant Indigenous organisations
- Researchers should be required to discuss their projects with Indigenous community representatives, who may collaborate in the planning conduct and reporting of the studies
- Researchers and staff should be oriented to Indigenous worldviews, research principles, and historical and social contexts
- Researchers should work with representative organisations to build capacity among Indigenous organisations and communities
- Study results should be co-interpreted with the communities and their representatives who have a lead role in deciding how the results will be communicated more widely.
Professor Kukutai says organisations that want to work with Indigenous data must build a relationship of trust with Indigenous groups. “That means listening and learning from Indigenous teachings and principles so that we can strive to apply them to our relationships and collaborative projects that will then mean that this data can be used to promote well-being, health and effective policy,” she says.