Aboriginal Medical Services Alliance Northern Territory (AMSANT’)s concerns regarding the National PHC Data Asset (NPHCDA) are focused on the need for strong protection of the rights and interests of Indigenous people in relation to their health data. The consultants should be aware that there are many examples of Aboriginal health data being misused or misinterpreted to the detriment of our communities. Strong safeguards are required to prevent unintended consequences of misconceived, culturally unsafe research, inaccurate interpretation and reporting, or the possible misuse of Aboriginal health data derived from PHC records. Our strong view is that there needs to be a separate Indigenous controlled data governance structure. AMSANT has argued previously for similar Indigenous data governance for the secondary use of My Health Record data, and note that AIHW also holds governance over this data. Given these developments, we strongly urge that AIHW must consult with Aboriginal experts in this area as well as with the ACCHS sector on how to include Indigenous data governance in their governance structures.
- Trust is essential and most crucially that patients can trust that their information is used only for the purposes it is provided and that its confidentiality is maintained. The NPHCDA has the potential to undermine the trust of patients and communities if patient level data were to accessed or used without appropriate consent, for example, through linking with other data sets or being shared with researchers.
- AMSANT recommends that an Indigenous data governance structure should be established, perhaps within the AIHW, which also holds responsibility for governance of other data including in relation to the secondary use of My Heath Record data. Importantly, such a structure requires the power to make decisions, not be merely advisory and should be led by the Maiam nayri Wingara Indigenous Data Sovereignty Network, National Aboriginal Community Controlled Health Organisation (NACCHO) and other Aboriginal and Torres Strait Islander peak bodies. Governance structures should include majority Aboriginal membership including representatives from ACCHSs as well as academics with a strong understanding of Indigenous data governance.
- In general AMSANT does not support individual unit record data collection and are concerned that mainstream data governance frameworks do not comply with Indigenous data sovereignty requirements. Individual unit record data collection should not be required where aggregated, non-identified data is sufficient.
- Exercising Indigenous Data Governance enables Indigenous peoples, our representative and governing bodies to accurately reflect our stories. It provides the necessary tools to identify what works, what does not and why. Effective Indigenous Data Governance empowers our peoples to make the best decisions to support our communities and First Nations in the ways that meet our development needs and aspirations.