Researchers recommend principles for governance of indigenous health data

A team of researchers from Aotearoa New Zealand, Australia and Canada have recommended principles to govern the use of data related to indigenous health.

The principles were utilised during a project linking health administrative data to First Nations individuals in Canada. Professor Tahu Kukutai from the University of Waikato co-authored the article.

The principles are:

• "Access to and use of data with Indigenous identifiers are approved by data governance committees organised and populated by the relevant Indigenous organisations
• Linked datasets with Indigenous identifiers are not routinely available to researchers and analysts, who must make specific application and seek approval from the relevant data governance committee before they can access them
• Researchers are required to discuss their projects with Indigenous community representatives, who may collaborate in the planning conduct and reporting of the studies
• Researchers and staff at ICES [Institute for Clinical Evaluative Sciences] participate in ongoing initiatives to orient them to Indigenous worldviews, research principles, and historical and social contexts
• Staff at ICES are working with representative organisations to build capacity among Indigenous organisations and communities to train Indigenous analysts and epidemiologists
• Study results are co-interpreted with the communities and their representatives, who have a lead role in deciding how the results will be communicated more widely"

The principles were published recently in the Lancet, Indigenous health data and the path to healing (Walker, Lovett, Kukutai, Jones, and Henry 2017). The authors discuss the need and right of Indigenous people to data sovereignty. They also highlights the lack of global guidance in this area:

"Article 24 of the United Nations Declaration on the Rights of Indigenous Peoples asserts the right to achieve the highest attainable health. However, it does not provide guidance on governance of the data that are needed to measure progress towards this goal. Greater efforts are needed to track the health of Indigenous peoples, and address concerns about the ways in which data are gathered and the political ends to which they might be used."

Professor Tahu Kukutai from the University of Waikato said there are large gaps in how we govern use the use of Māori data, saying "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."

Further information

Professor Tahu Kukutai leads Te Mana Raraunga, the Māori Data Sovereignty Network. She has co-edited the book, Indigenous Data Sovereignty: Toward an Agenda (2016) which provides background about data sovereignty, the relationship between colonisation and data misuse, case studies and more. Also see Professor Tahu Kukutai's other publications.

Related information

For information on New Zealand's "social investment" approach and related use of data, see our previous story Updates, events and resources on "social investment" approach (August 2017, with updates to October 2017).

Media

Data sovereignty: New global guidelines for indigenous health, Radio NZ, 12.11.2017

Researchers challenge Maori data use, Waatea News, 18.11.2016