Background: Indigenous peoples, researchers and governments are increasingly interested in accessing Indigenous population registries. The data from these registries are being linked with other government-held administrative and routinely collected data to conduct research on health services use and ongoing monitoring of population health. While this use of administrative data is important for Indigenous peoples, there are some key considerations for the management and use of Indigenous-identified health data.
Aim: We will describe two illustrative cases, one in Canada and one in Australia, of Indigenous data governance approaches to the secondary use of Indigenous population registries linked to administrative and routine data collections.
Results: In Canada, First Nations organisations have established a set of principles to assert their right to retain collective ownership, control, access and possession (OCAP®) of First Nations data. In Ontario, the Chiefs of Ontario and the Institute for Clinical Evaluative Sciences (ICES) entered into a Data Governance Agreement in 2012 that respects OCAP® and dictates that decisions about the use of First Nations-identified data at ICES are governed by First Nations. The Data Governance Agreement has facilitated the linkage of the federal Indian Registry System data file to a rich array of population-level health administrative data sources held at ICES. This data linkage project has resulted in the creation of the largest First Nations health research study cohort in Canada (n = 200,000) and is being used by the Chiefs of Ontario for disease surveillance and evaluation of health services.
In Australia, the development of similar governance process such as OCAP® are absent and instead consists of a number of advisory and consultative structures. The largest population register of Indigenous people is currently held by Medicare Australia and has been collected for around a decade, but access for data linkage has no Indigenous information governance arrangements.
Conclusions: Internationally, Indigenous peoples are developing and applying models of Indigenous governance to administrative data and data linkage processes. Indigenous data governance can be achieved through ensuring that institutions that conduct data linkage and research using administrative and routine data collections have appropriate data governance mechanisms in place.