Data are critical to the delivery of evidence-based, best practice cancer care across the continuum. While there are multiple health and cancer data sets across all care settings within the Australian health system, barriers continue to persist in Aboriginal and Torres Strait Islander identification, data sovereignty and nationally consistent collection of Aboriginal and Torres Strait Islander specific health information. Collection of Aboriginal and Torres Strait Islander health and cancer data should be trauma-aware, healing-informed and sensitive to the historical intergenerational impact and trauma associated with the historic collection of Aboriginal and Torres Strait Islander people’s information.

Aboriginal and Torres Strait Islander data refers to information, in any format, that is about Aboriginal and Torres Strait Islander people, knowledge, systems, customs, resources or territories or that impacts Aboriginal and Torres Strait Islander peoples’ lives on a collective or individual level. Aboriginal and Torres Strait Islander people should be provided with every opportunity to control information and data that relates to their health, knowledge, personhood, and culture through mechanisms related to Aboriginal and Torres Strait Islander data sovereignty and governance. This includes the right of Aboriginal and Torres Strait Islander people to govern the collection, ownership and application of all cancer and health data about Aboriginal and Torres Strait Islander people.

Establishing Aboriginal and Torres Strait Islander-led initiatives will ensure appropriate protection and use of Aboriginal and Torres Strait Islander people’s cancer and health data that respects the collective and individual interests of Aboriginal and Torres Strait Islander people and empowers self-determination and self-governance. By empowering Aboriginal and Torres Strait Islander people, communities and Aboriginal Community Controlled Health Services and organisations as the data custodians, cancer data and research can be better used to improve consumer outcomes.

Aboriginal and Torres Strait Islander-led initiatives that strengthen data sovereignty and governance of cancer data may include:

• establishing governance structures and partnerships with the Aboriginal and Torres Strait Islander community controlled sector to determine how Aboriginal and Torres Strait Islander cancer data are collected, managed, shared, stored and used in a trauma-aware, healing-informed approach
• co-designing data ecosystems with Aboriginal and Torres Strait Islander people, communities, peak organisations, community groups, government, experts and consumers
• establishing Aboriginal and Torres Strait Islander-led guidelines on data collection, use, dissemination and analysis of Aboriginal and Torres Strait Islander cancer data
• embedding principles and standards of Indigenous Data Sovereignty into cancer data initiatives
• developing accountability mechanisms and ongoing monitoring of maturity of Indigenous Data Sovereignty and governance in Australia.

This action is particularly crucial as the volume of health and cancer data continues to increase, particularly with the emergence of new digital technologies, predictive analytics operations, and better use of existing data. Implementation of this action could ensure that the broader policy environment can support Indigenous Data Sovereignty and governance.

This action should build on and align to the National Agreement on Closing the Gap[8] in working towards achieving the Closing the Gap targets.