NSW Health has a reformed data ecosystem that respects and upholds Indigenous Data Governance and Sovereignty principles and implements these as standard practice.
The ability of Aboriginal communities and organisations to inform and influence policy, program decisions, and outcomes is heavily reliant on access to appropriate, high-quality, granular data (both quantitative and qualitative) and other information61. Good data and information management allows services to be monitored and evaluated effectively, supports accountability of governments to Aboriginal people and organisations, and contributes to a shared understanding between government and communities about priority issues and the solutions that work.
Priority reform four in the National Agreement and the NSW Closing the Gap Implementation Plan therefore calls for increased resourcing and capability development of Aboriginal organisations to engage with data, co-create culturally appropriate data management practices, and hold governments accountable to their commitments62, 63.
It is evident through reporting on the National Agreement that government data needs to be more meaningful and relevant to Aboriginal communities64. Any data about Aboriginal people that government gathers, analyses and reports must be contextualised and appropriately disaggregated. It should accurately reflect Aboriginal peoples’ priorities and life worlds65, 66. While data systems should retain sufficient security protections and confidentiality precautions, appropriately de-identified data should be made available and accessible to Aboriginal organisations and researchers.
Accordingly, NSW Health needs a data ecosystem that facilitates streamlined and appropriate data sharing with Aboriginal organisations, and enables Aboriginal self-determination anchored in dialogue and joint decision-making to create a more complete data picture of Aboriginal peoples’ health and wellbeing.
Indigenous Data Sovereignty works to counteract harmful structures and narratives by advancing the human rights of Indigenous peoples to exercise ownership over Indigenous data. This ownership can be expressed through the creation, collection, access, analysis, interpretation, management, dissemination, and reuse of Indigenous data67.
Indigenous Data Sovereignty is practiced through Indigenous Data Governance. This is the right of Aboriginal peoples to autonomously decide what, how and why Aboriginal data is collected, accessed and used, ensuring data on or about Aboriginal people reflects their priorities, values, cultures, worldviews and diversity68.
For Aboriginal people and organisations to fully exercise their right to self-determination through community-led and culturally safe healthcare, ownership of Aboriginal health data across the NSW health system needs to be advanced through Indigenous Data Governance and Sovereignty.
Indigenous Data Governance and Sovereignty principles are implemented as standard practice across the health system.
For Aboriginal people and organisations to be equal partners in health system reform, they need to be involved in decisions around the development of data assets, be able to access the same Aboriginal health data and information that NSW Health organisations use to make decisions and be involved in those decision-making processes. That data also needs to be useable and useful, including being up to date and disaggregated at local levels. Effective interrogation and improvement of health data quality requires Aboriginal people and organisations working in genuine partnership. This will reflect the data and information sharing elements set out in the National Agreement69.
Transparency of system-level health data will also help ensure NSW Health and other health system organisations are held accountable to Aboriginal people and communities.
Aboriginal people and organisations can easily access Aboriginal health data in useable forms that facilitates their analysis of health outcomes and informs health care decision-making at both individual and collective levels.