Understanding whether a consumer identifies as Aboriginal and Torres Strait Islander ensures that the cancer care and services received are both clinically appropriate and trauma-aware, healing-informed. Improved data accuracy also supports improved understanding of Aboriginal and Torres Strait Islander health outcomes, service and program planning and funding.

Australia’s cancer care system currently lacks a national approach to identifying and reporting Indigenous status in cancer care. For example, while some jurisdictions have included Indigenous status in pathology requests, there are differences in the guidance and legislation regarding health data privacy and health information. Nationally consistent data on Indigenous status, and ease of access to that data at all stages of care, will enable the identification of emerging trends, gaps and issues affecting Aboriginal and Torres Strait Islander people and the development of trauma-aware, healing-informed solutions in response.

Implementation of this action should consider:

• developing nationally consistent standards for consent to identify and report on Indigenous status, co-designed with Aboriginal and Torres Strait Islander people
• developing nationally consistent pathology forms that identify and report on Indigenous status (including digital pathology), co-designed with Aboriginal and Torres Strait Islander people
• enabling nationally consistent legislation regarding health data privacy and health information, co- designed with Aboriginal and Torres Strait Islander people
• supporting and training the cancer care workforce on identifying and reporting Indigenous status, and seeking consent, in a trauma-aware, healing-informed manner
• raising awareness for consumers, including their carers and families, of the benefits of providing information on Indigenous status.

This action should be implemented in alignment with Action 4.2.4 Establish Aboriginal and Torres Strait Islander-led initiatives which strengthen Indigenous Data Sovereignty and governance of cancer data.

Implementation should also consider the compounding impacts of intersectionality for Aboriginal and Torres Strait Islander people who identify with multiple priority population groups.

It is also important to consider the historical intergenerational trauma resulting from government policies, interventions and regulations impacting Aboriginal and Torres Strait Islander people and their private health data.