12 Nov 2017

Data sovereignty: New global guidelines for indigenous health

8:25 pm on 12 November 2017

A Waikato University professor has helped to develop a global guideline for researchers who use indigenous health data.

Dr Tahu Kukutai, Associate Professor and Lead Researcher at NIDEA.

Dr Tahu Kukutai Photo: Supplied

The guidelines, published in one of the world's oldest general medical journals, the Lancet, encourages researchers to engage with indigenous groups in the collection and protection of indigenous health data.

Waikato University demography lecturer Tahu Kukutai is part of a group of researchers looking to ensure indigenous groups have access to and control over their own data.

Dr Kukutai said census data had historically been used to alienate Māori from the land and assert colonial power.

"That's not unique to Māori by any means," she said.

"There's a similar story of statistics and census-taking in service to the state - to the detriment of indigenous people - in the other colonial states like Canada, United States and Australia just to name a few."

The guidelines were created by researchers from England, Canada and Australia and were published this week and offer a framework for researchers using indigenous data to engage with indigenous groups, concepts and values.

A major goal, Dr Kukutai said was to improve the access indigenous groups have to their own data, with the move towards indigenous data sovereignty well in motion.

"There's been an appreciation and change of attitude to where there is a demand for data and the way data can really [advance] Māori aspirations."

National Hauroa Coalition (NHC) clinical director Rawiri Jansen is part of Te Mana Raraunga - a Māori data sovereignty network that was formed in 2015.

Te Mana Raraunga has a charter which states data is a living tāonga and is of strategic value to Māori. Dr Jansen said this tāonga needed to be protected.

Dr Rawiri Jansen, the chair of Te Ohu Rata o Aotearoa (Māori Medical Practitioners Association).

Dr Rawiri Jansen Photo: nzdoctor.co.nz

"Guidelines are helpful for getting researchers to think about their obligations and how they engage with indigenous populations."

NHC has 130,000 patients in 30 clinics across five District Health Board regions and 25 percent of patients are Māori.

The goal in establishing indigenous data sovereignty was to allow indigenous groups to use data to tell a story of their issues which they face - instead of having organisations dictate indigenous data to them - Dr Jansen said.

"Access and control in governance over that data, our data, will inform better health services and better health outcomes and it's generally recognised this is the right direction of travel."

Kirikowhai Mikaere, who works on Māori data translation with iwi and organisations, said accessing the limited iwi data the government had was a costly exercise.

She said Māori data sovereignty was about improving access to iwi data.

"Gone are the days where we just consume the data that people give us and we think that's how things are - actually, no, we want to be a part of the design of the data and the data infrastructure for this country."

Ms Mikaere said increased data sovereignty would also help iwi with decision making and help them allocate their limited resources appropriately.

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