Bringing an Indigenous perspective and ownership to health data

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

It includes Echuca, Shepparton, Benalla, Corowa and Wangaratta and extends north to south of Deniliquin. As Yorta Yorta winyarr (woman), everything is one place – one country.

Yorta Yorta country along the Murray River is one location, but health data has been spread across multiple jurisdictions. Photo: Getty Images

But when I started researching the health of Yorta Yorta ganas (mothers) and their burrais (children), I discovered that our health data was not stored in one place. Instead, it was spread across numerous organizations at the local, state, and federal levels. Siled between different bureaucracies, it was difficult – to say the least – to easily identify and understand Yorta Yorta-specific population health trends.

The task of linking all this data on maternal health and birth outcomes became my doctoral research – Gana Burrai, which means “mother baby”.

Using the University of Melbourne’s GRHANITE computer software for linking different health data and datasets, my research linked 25,594 birth records of 21,358 mothers in eight datasets. The work described patterns and trends in maternal and child outcomes in Yorta Yorta country from 2008 to 2017 inclusive, using Indigenous geospatial boundaries to ensure that the total Indigenous population was included.

One of the key findings of this research was the power of linking mother-birth records between sites. Data linkage allowed for a more accurate understanding of Indigenous identification in administrative records and revealed a significant undercount of Indigenous births in this specific population between the years 2008 to 2017 inclusive.

The method used to correctly identify misclassified status was to apply the “Ever-Aboriginal” algorithm after the datasets were linked. This means that if a person was identified as Aboriginal and/or Torres Strait Islander in any of the data sources, they were considered Aboriginal.

Considering all data sources combined, the study indicated that indigenous births in Yorta Yorta woka (country) for the years 2008 to 2017 inclusive represent 8.71% of all births.

Linking data from different datasets produces a more complete picture of health in Indigenous communities. Photo: Getty Images

Indigenous community leaders and members have long been skeptical of government statistics – the 2016 ABS Census estimated an Indigenous population of 3.4% for Greater Shepparton, 2.4% for Campaspe and 1.7% for Moira. But this study lends weight to community leaders’ own conservative estimates that the true local Indigenous population is higher, somewhere between 4 and 6 percent of the population.

Working in a tight-knit and connected community, the need to maintain privacy and confidentiality was paramount. It was essential to maintain the balance between reporting on events that occur and being a pair of safe hands to hold the Indigenous data.

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

Quantitative data collection and analysis led by Indigenous researchers and informed by community relations plays an important role in creating meaningful research that benefits Indigenous peoples.

Through methodologies that reflect the social, cultural, geographic and political contexts in which they are collected, analyzed and interpreted; Indigenous-led data management unleashes a narrative that is more powerful than neutral numbers alone.

The use of Indigenous data sovereignty and stewardship principles was a key component of this research. The ability of the community to have ownership, management and sovereignty over our data, and to determine who has access to it and how it will be used continues to evolve.

Indigenous data sovereignty and stewardship is crucial. Photo: Getty Images

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

Having control over access to and interpretation of analytics shifts the balance of power. As patterns emerge and trends become evident from the data, the community can use them to generate and inform evidence-based policies, including funding models and service programs and practices. health.

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

In the next phase of research, through an MDHS Indigenous Postdoctoral Fellowship, I will focus on Indigenous children with the aim of linking health data collected at Commonwealth, State and local levels to create a comprehensive and nuanced data set describing outcomes for children’s health and well-being. .

The data will separate data on Indigenous children from the general population, and it is expected that the results can illuminate gaps in demographic data, support evidence-based policymaking, and identify key areas of concern. interest.

Indigenous access and interpretation of data can shift the balance of power to local communities. Photo: Michael Coghlan/Flickr

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

Building a knowledge base on the incidence and types of out-of-home care experienced by Aboriginal children will also be a critical part of the research.

This information will be brought together in a larger picture, to present a people’s view of what is happening to Indigenous child health in the Goulburn Murray area – Yorta Yorta country.

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

Dr. Karyn Ferguson’s doctoral research was undertaken as a Dungala Kaiela Fellow at Melbourne Pocket Center for Indigenous Health. Karyn is looking forward to graduating and settling into her postdoctoral position at the Center 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 Pocket Center Dinner and Narrm Oration on November 18.

Banner: Getty Images

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