Aboriginal and Torres Strait Islanders have had their knowledge on how to thrive ignored. Sarah Bourke is using data sovereignty to change that. Rachel Curtis reports.

Sarah Bourke is carving out the way for generations of Aboriginal and Torres Strait Islanders to thrive. The medical anthropologist is exploring the complex fabric of Indigenous ways of knowing and showing how this can improve health for all First Nations Australians.  

Bourke is an Aboriginal woman born and raised in Canberra and is a descendant of the Gidja people of Western Australia and the Gamilaroi people on the border of Queensland and New South Wales, with ancestors who emigrated from England, Ireland and China in the 1800s.  

Based at the ANU National Centre for Epidemiology and Population Health, she is working to identify the drivers of health and well-being for Aboriginal and Torres Strait Islander individuals, communities and cultures. 

“Indigenous lifeways or Indigenous ways of knowing capture the way we Aboriginal and Torres Strait Islanders exist and interact with the world,” she says. “Supporting Indigenous lifeways will help us to thrive. Measuring cultural determinants of health and well-being will help us do that.”  

Bourke’s research has landed the 2021 Stanner Award for the best academic manuscript written by an Aboriginal or Torres Strait Islander author. The award-winning thesis, conducted at the University of Oxford, examines how culture is key in the health and well-being of Aboriginal and Torres Strait Islander people and how it can be measured to better inform policy and address systemic inequity.

“Much of the data which has been collected about Indigenous people by governments and others, up to this point, has not served our interests,” Bourke says. “That’s why the research I am looking at has a really important political role to play in Australia and other government systems. We need to be asking the right questions.”  

Bourke’s thesis unpacked the largest health and well-being study of adult First Nations Australians, the Indigenous-led longitudinal Mayi Kuwayu Study. The study, which is led by ANU Associate Professor Ray Lovett, uses data from more than 10,000 Aboriginal and Torres Strait Islander adults.

“We don’t just exist as individuals, we exist as communities.” 

Bourke was interested in the study’s data sovereignty and how Indigenous researchers can conduct research to benefit their communities. “The Mayi Kuwayu Study is a powerful tool for measuring Indigenous lifeways. There was initially a push back from some predominately non-Indigenous groups that said ‘you can’t measure culture’ and there was this idea that culture is intangible,” she says.   

“If you pretend something is too hard to do, then it never gets done. This kind of data was in the too-hard basket, but this study shows you can measure it and you can see the impact on people’s health and well-being.”  

The Mayi Kuwayu Study, still in its infancy, has already shown how Aboriginal and Torres Strait Islander identity, cultural participation and knowledge are linked to better health outcomes. It has also found Aboriginal and Torres Strait Islander adults who have experienced discrimination have poorer health and well-being outcomes regardless of their age, where they live and their gender.  

Bourke argues that Aboriginal and Torres Strait Islander people must have a greater voice and more self-determination when it comes to their health. “The old way hasn’t worked for a very long time,” she says. “There is a lot of knowledge already in communities about what works for our health, but it isn’t heard enough through the current processes.  

“Indigenous data sovereignty is where Indigenous communities decide what data is and how it’s used and how it’s interpreted within our own frameworks. This is what will help us to address our key challenges and reveal our opportunities to grow.   

“One of the pillars that will build this momentum going forward for Indigenous people is to be in control of research and inform how we are represented. This study works toward Indigenous peoples having control over our own lives and how that’s supported by larger scale policies.”  

Bourke says comparing Indigenous outcomes against a limited and non-Indigenous understanding of health misses the richness of culture that has maintained the strength of Aboriginal and Torres Strait Islander communities for tens of thousands of years.   

“From my perspective as a medical anthropologist we need to look at people holistically,” she says. “This is an Indigenous way of knowing but other groups are waking up to this being a good way to think about ourselves and our health.   

“We don’t just exist as individuals, we exist as communities. This is an important lesson from Indigenous ways of thinking about health and well-being which non-Indigenous and other groups can learn from.” 

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