Indigenous data governance for the 21st century

Justice and equity for Indigenous people will depend increasingly on achieving Indigenous data sovereignty and Indigenous data governance.

In Australia, this has developed slowly and in diverse ways, with community organisations, data scientists and researchers addressing the issues in local settings.

In 2016, Professor Tahu Kukutai and Emeritus Professor John Taylor from ANU’s Centre for Aboriginal Economic Policy Research asked, “what does data sovereignty mean for indigenous peoples, and how is it being used in their pursuit of self-determination?”.

These were just two of the questions addressed by 183 Indigenous data users, data scientists, researchers and government and community representatives at the Indigenous Data Governance and Sovereignty Roundtable by the Indigenous Data Network (IDN) in Narrm at the University of Melbourne.

The IDN was founded in 2018 with the aim of driving better data outcomes for Aboriginal and Torres Strait Islander peoples by supporting Indigenous data empowerment with a national approach.

The Roundtable, convened by Professor Marcia Langton, Dr Kristen Smith, Dr Vanessa Russ and Levi-Craig Murray, and co-funded with the Australian Research Data Commons, was an important step in the IDN’s project – Improving Indigenous Research Capabilities: An Aboriginal and Torres Strait Islander Research Data Commons.

Its objective is to build national Indigenous research capabilities, framed by a set of agreed Indigenous governance principles that can leverage existing data assets and link them to new and existing data.

Shaping the future

There are many design questions that require the input of both Indigenous leaders in this field and the data scientists and other researchers: Who owns the data? How is that data accessible for use? How should Indigenous data be collected, conserved, accessible and reused?

Of great concern to Indigenous people is the data relating to Indigenous people which has been collected over many decades and held by data custodians, including government departments, universities, museums and libraries.

This data has critical relevance to how we shape our future.

The dilemma for Indigenous people is that data about them cannot be accessed by them in most cases.

Data custodians either don’t share it or don’t observe the Indigenous data governance principles. Even when data is shared with Indigenous parties, like community-controlled entities, a range of problems arise.

The IDN’s research team and partners are investigating these issues and these insights are integral to realising a core goal of establishing an Aboriginal and Torres Strait Islander Research Data Commons.

Across Australia, Indigenous research data formats vary – data is scattered, there’s inadequate or no cataloguing, there are many unidentified or siloed custodians, and little knowledge of what data exists.

And that needs to change.

Empowering indigenous data

One outstanding example of Indigenous data sovereignty and governance in practice is the ATSICHS Data Ecosystem – a sophisticated data management and analytics environment developed by the Aboriginal and Torres Strait Islander Community Health Service (ATSICHS).

The Data Ecosystem lays the technical foundation for the ATSICHS Brisbane Data Science Roadmap co-designed with QUT’s Centre for Data Science and eResearch team.

A core principle is that the needs and safety – as well as ability for clients to govern their data ecosystems – must be at the centre of the service. The roadmap has empowered the community, enabling benchmarking reporting, use of census data and operational reporting.

It’s designed to address community needs and represent best practice enhancement of data literacy, gathering community feedback through questionnaires, interviews, and focus groups.

It has also begun to explore sophisticated approaches to online platforms that involve dynamic e-consent processes which allow Indigenous people at any point to consent, re-consent and withdraw consent.

ATSICHS have completed their IT Roadmap and are progressing their Data Roadmap, integrating advanced data science and embedding data driven decision making.

Data literacy in the Indigenous community and the importance of institutions appropriately managing research data is a priority – shifting from an extractive relationship to a partnership with local Aboriginal peoples.

These tools and technologies need to include both the FAIR and CARE principles applied to Indigenous governance of our data commons for data linkage, cleansing of data for use and storage requirements.

Indigenous data practitioners and their partners from data science are acutely aware of the power of Indigenous data sovereignty and governance as well as the need to carefully design systems for collection and storage – using that to empower Indigenous people, not marginalise them.

The General Data Protection Regulation in Europe has become the de facto global standard for data regulation – this has significant implications for the Privacy Act 1988 in Australia. The current Act’s jurisdictional limitations on data doesn’t meet European Union standards.

This state of affairs presents an opportunity for Indigenous people to insert their voices into imminent law reform.

Correcting the historical record

Censorship and authentication have implications for the rigour of research and the benefit to Indigenous data users – misinformation on historical archives can lead people astray in identifying connections to country.

Director of the Anthropology Museum at the University of Queensland, Michael Aird, is correcting the historical record and reconnecting individuals with their family lines and ancestors by providing the stories that emerge from this painstaking research.

Michael showed how archives of historical material are especially important for Indigenous people who are seeking to secure their native title rights or to reunite their families after generations of the forced removal of Aboriginal children.

So, the ability of researchers to investigate these matters is a priority.

However, a perverse type of censorship has become the practice in these collecting institutions.

Despite the impossibility of identifying the community of origin for photographs of unnamed people, many institutions won’t permit researchers to see these materials without “permission from communities”.

Without change in these policies, the archives will remain closed to Indigenous families seeking to know their past.

Data management

So, what is the data we are talking about and what is it intended to be used for?

Many local Indigenous groups want their data stored on their own country. This involves several considerations.

The first is choice – can and should users be able to take your data away, or do you want to keep the content locally, on country.

Secondly, is there the right infrastructure to maintain these collections on country? If so, do you have to be on country to access the data? What systems should we design to access sensitive data?

These challenges also involve the need to consider the means of dealing with capacity building in the management of collections. Understanding and accommodating the different choices will be the key to the successful function of the network as a whole.

What data do communities need?

Across Australia, Indigenous communities are requesting access to data. The most urgent need is for disaggregated data by Indigenous status, including health, correction data, education and development.

Indigenous community leaders need data for decision-making purposes to enable their organisations to pursue the highest priorities based on evidence.

A critical point that needs to be understood by government officials and data custodians is that, as Binarri-binyja yarawoo Technical Advisor Christine Deng has put it, “data access and shared decision-making are two sides of the same coin”.

A key step forward would be initiating joint decision-making between government officials and community leaders by involving these voices in decisions over Commonwealth funding with the core goal of establishing an Aboriginal and Torres Strait Islander Research Data Commons.

The research highlighted here was presented at a two-day roundtable hosted at the University, which enabled vibrant, insightful and important discussions on the practical and technical application of Indigenous Data Governance and Sovereignty principles. The work will be translated and applied to Indigenous research data tools and infrastructure.

Those presenting included:

Raymond Brunker, Jarryd Aleckson and Dr Jonathan Leitch from the Aboriginal and Torres Strait Islander Community Health Service.

Professor Peter Anderson, Professor Matt Bellgard, Professor Kerrie Mengerson, Professor David Lovell and Ms Becki Cook at QUT.

Stephanie Von Gavel from CSIRO and Professor Rachel Ankeny from the University of Adelaide.

Special advisor to the IDN, Dr Kris Wilson from the University of Technology Sydney.

Mr Michael Aird from the University of Queensland.

Members of the Maiam Nayri Wingara Collective.

Associate Professor Steve McEachern of the Australian Data Archive at the Australian National University.

Christine Deng from the Binarri Binyja Yarrawoo Empowered Communities, backbone for Empowered Communities East Kimberley.

Gary Powell from Empowered Communities National Team and Empowered Communities Secretariat Ngaanyatjarra Pitjantjatjara Yankunytjatjara (NPY) Lands.

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