Bringing an Aboriginal lens and ownership to health data

My country, Yorta Yorta country, covers some 20,000 square kilometres across both sides of the Dungala (Murray River), roughly extending along the Victorian-New South Wales border from Cohuna to Howlong.

It includes Echuca, Shepparton, Benalla, Corowa and Wangaratta and extends northwards to just south of Deniliquin. As a Yorta Yorta winyarr (woman) it is all one place – one country.

But when I began researching the health of Yorta Yorta ganas (mothers) and their burrais (children) I found that our health data wasn’t stored in one place. Instead, it was spread across numerous organisations at local, state and federal levels. Siloed by different bureaucracies, it was difficult – to say the least ­– to easily identify and understand population health trends specific to Yorta Yorta people.

The task of linking together all this data on maternal health and birth outcomes became my PhD research – Gana Burrai, which means ‘mother baby’.

Using University of Melbourne GRHANITE computer software that enables the linkage of different health data and data sets, my research linked 25,594 birth records of 21,358 mothers across eight data sets. The work described the patterns and trends of maternal and infant outcomes on Yorta Yorta country from 2008 to 2017 inclusive, using Aboriginal geo-spatial boundaries to ensure the total Aboriginal population was included.

A major finding of this research has been the power of the linkage of mother-birth records across the sites. Data linkage has enabled a more accurate understanding of Aboriginal identification in administrative records and uncovered a significant undercount of Aboriginal births in this specific population between the years 2008-2017 inclusive.

The method used to correctly identify misclassified status was to apply the ‘Ever-Aboriginal’ algorithm after the data sets were linked. That means that if any individual ever identified as Aboriginal and/or Torres Strait Islander in any of the data sources then they were deemed to be Aboriginal.

Considering all data sources combined, the study reported that Aboriginal births on Yorta Yorta woka (country) for years 2008-2017 inclusive represent 8.71 per cent of all births.

Aboriginal community leaders and members have long been sceptical of government statistics – the 2016 ABS census estimated an Aboriginal population of 3.4 per cent for Greater Shepparton, 2.4 per cent for Campaspe and 1.7 per cent for Moira. But this study lends weight to community leaders’ own conservative estimates of the true local Aboriginal population being higher, somewhere between 4-6 per cent of the population.

Working in a tight-knit, connected community, the need to maintain privacy and confidentiality was paramount. Maintaining the balance between reporting on things that are happening and being a safe pair of hands to hold Aboriginal data was critical.

A key part of the work – the first of its kind in Australia – was how it blended an epidemiological methodology within an Aboriginal context, applying an Aboriginal lens to the concept, design, analysis and interpretation of the research.

Quantitative data collection and analysis led by Aboriginal researchers and informed through community relationships plays a powerful role in the creation of meaningful research beneficial to Aboriginal populations.

Through methodologies that reflect the social, cultural, geographic and political contexts in which they are collected, analysed, and interpreted; Aboriginal-led data management brings to the surface a narrative that is more powerful than just the neutral numbers alone.

Utilising the principles of Aboriginal data sovereignty and management was a key part of this research. The capacity for the community to have ownership, management and sovereignty over our data, and determine who has access to it and how it will be used continues to evolve.

The process of engagement and relationship building was fundamental to the Gana Burrai project.

Having control over the access and interpretation of analysis changes the power balance. As patterns emerge and trends become evident from data, the community can use it to generate and inform evidence-based policy, including funding models and health service program and practice.

This control gives the community the power and influence to change the narrative about Aboriginal people and their health.

In the next phase of the research, thanks to a MDHS Indigenous Postdoctoral Fellowship, I will focus on Aboriginal children with the aim of linking Commonwealth, state and locally collected health data to build a comprehensive and nuanced data set that describes children’s health and wellbeing outcomes.

The data will separate Aboriginal children’s data from the general population, and it’s expected that the findings will be able to inform demographic data gaps, support the development of evidence-based policy and identify key areas of focus.

This data collection approach will also provide evidence for culturally-informed practice. There will be a focus on determining the medical, social, environmental and economic factors that influence the development of Aboriginal children.

Establishing a foundation of knowledge of the incidence and types of out of home care experienced by Aboriginal children will also form a critical element of the research.

This information will be pulled together into a broader picture, to present a population view on what’s happening in Aboriginal child health in the Goulburn Murray region – Yorta Yorta country.

Ultimately this research will create new knowledge to understand health factors that influence Aboriginal lives.

Ms Karyn Ferguson’s PhD research was undertaken as a Dungala Kaiela Fellow at the Melbourne Poche Centre for Indigenous Health. Karyn is looking forward to graduating and settling into her postdoctoral position in the Centre for Health Analytics, The Melbourne Children’s Campus, Department of Paediatrics.

Karyn, along with other Indigenous PhD students and graduates, will celebrate their success at the Melbourne Poche Centre dinner and Narrm Oration on November 18th.

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