Aboriginal and Torres Strait Island people’s data: looking at the facts through a different lens

Indigenous data sovereignty and governance raises its own special issues:

Nature Medicine correspondence on the Australian TBI National Data

project from NTRI authors and others. Image: Danielle Mate

A traumatic brain injury project led by Monash University, guided by Aboriginal and Torres Strait Islander researchers and traumatic brain injury (TBI) patients, is creating a first for data collection, analysis and reporting.

by Anne Crawford

The Monash-led Australian Traumatic Brain Injury National Data (ATBIND) Project has for a year worked towards generating an overall epidemiological profile for moderate to severe traumatic brain injury (TBI) and developing national clinical quality indicators. Incorporating Indigenous knowledges and Aboriginal and Torres Strait Islander engagement is a central and revolutionary part of this registry-based project. 

The project, for example, will use Indigenous research methods of ‘yarning’, a conversational research method for rich data collection, and Yuri Ingarninthii, a process of deep listening for recording and understanding.

A recent letter to the editor in ‘Nature Medicine’ outlines the project’s aims and objectives in this area. 

It flagged ATBIND’s intention to set a precedent for other registry projects – both national and international – to “aspire to work safely and respectfully with Indigenous data and establish data partnerships through Indigenous Data Sovereignty and Governance with First Nations peoples and communities”. 

Indigenous Data Sovereignty and Governance is an international movement that embodies the reclamation of Indigenous knowledges and research methodologies, the letter says.

The project is funded for two years by the Medical Research Future Fund (MRFF) to review data on moderate to severe TBI in patients who are predominantly hospitalised, looking at determinants connected to their outcomes, and then important quality indicators or measures of quality that could be applied nationally. Data will be collated at the end of this year. 

It is being steered by co-investigators who form an Aboriginal Torres Strait Islander Data Governance Group headed by Dr Courtney Ryder, senior Aboriginal researcher on the team and Discipline Lead for Injury Studies at Flinders University.   

Dr Gerard O'Reilly, Adjunct Clinical Associate Professor at The Alfred’s Emergency and Trauma Centre, is the Primary Chief Investigator of the project. Other Monash and Alfred Hospital researchers across various departments include CIs and AIs Professor Mark Fitzgerald, Professor Biswadev Mitra, Dr Yen Kim, Associate Professor Jin Wee Tee and Dr Terence Tan.

“It has become clearer to me over the course of the project that this was unique, potentially novel and quite a big change, and we wanted to get it out there, saying ‘this is what we’re doing and we’d love others to see it’,” Dr O’Reilly said. “We’re probably holding ourselves to account by getting it out there!” he said of the letter.

“This being a national approach that is for the first time in more than a decade getting baseline national data, we really need to pay respect to Aboriginal and Torres Strait Islander communities and what it means for their health and wellbeing in terms of the TBI experience,” he said.

Aboriginal and Torres Strait Islander communities are inequitably impacted by injury, experiencing double the risk of traumatic brain injury (TBI) and double the incidence of TBI-related emergency department presentations and hospitalisations relative to that of other Australians, the letter says.

The way this data on health inequities is presented however often focuses on a “deficit discourse”, which implies that the responsibility lies with Aboriginal and Torres Strait Islander communities for their worse outcomes. “A positive data narrative or reports of quality clinical indicators that reflect the strength, self-determination and sovereignty of Aboriginal and Torres Strait Islander peoples are absent from the injury literature,” it says.

Dr O’Reilly said, “As Chief Investigator or the person co-ordinating the project I had to ask what it meant to collect data about Aboriginal and Torres Strait Islander people, to analyse that data and to report on that data and then to ask the question of what ‘quality’ means to those Aboriginal and Torres Strait Islander peoples when it comes to the emergency care following moderate to severe TBI.”

“Registries and data bases traditionally focus on data approaches defined by dominant traditions and cultures,” Dr Ryder said. “These approaches do not align with the lived experience of knowledge of Aboriginal and Torres Strait Islander communities – it’s imperative that we change this,” she said.

“I think the letter in particular points out that data really need to be owned by the people that the data set is talking about, it needs to relate to them and it needs to represent them appropriately,” Dr O’Reilly said. “Otherwise, one could fall in the trap of a simplistic and hierarchical approach, reporting data saying, ‘it’s all bad in this group’ which can cause further marginalisation. 

“This just feeds into a discourse or narrative that says, ‘it’s always bad’, and there’s helplessness around that, rather than thinking deeper about why there are differences between groups,” he said. “A lot of the way we record stuff now has some blame inherent in it.”

Dr O’Reilly is consulting with the project’s Aboriginal Torres Strait Islander Data Governance Group, and Aboriginal and Torres Strait Islander patients with TBI who bring their shared lived experience and narrative, about how data are collected, analysed, recorded, put out to the community and advocated. Indigenous ethics groups and Elders will have substantial input into the project.

He said he is currently doing a lot of listening and learning about collecting data appropriately, different knowledge systems, language used in compiling data and whether that acknowledges the culture of, and the historical impact on the people it seeks to represent. 

Ryder C, Wilson R, D'Angelo S, O'Reilly GM, Mitra B, Hunter K, Kim Y, Rushworth N, Tee J, Hendrie D, Fitzgerald MC, Curtis K. Indigenous Data Sovereignty and Governance: The Australian Traumatic Brain Injury National Data Project. Nat Med. 2022 May;28(5):888-889. doi: 10.1038/s41591-022-01774-7. PMID: 35440783.

To read more about the ATBIND project see https://pubmed.ncbi.nlm.nih.gov/34528396/