Indigenous data policy
The collection and use of data on Indigenous health is a highly important and complex issue. While the Australian Longitudinal Study on Women’s Health (ALSWH) includes Aboriginal and Torres Strait Islander women as participants, it was not designed as, and should not be used as, a source of data about Indigenous health.
This is because the Australian research community agrees that research focusing on Aboriginal and Torres Strait Islander Australians should be conducted in a collaborative manner and must involve a continual process of consultation with key stakeholders, beginning at the initial development stages and continuing throughout data collection, analysis and decision-making about the uses to which data should be put. The nature of the ALSWH, which is not specifically conducted within Indigenous communities, has made it impossible for this process to be adopted.
Also because of the nature of the sampling frame, research methods and respondent bias, the data provided by Aboriginal and Torres Strait Islander women in the ALSWH are likely to not be representative of the experiences and health status of Aboriginal and Torres Strait Islander women in Australia more generally.
For full details concerning the ethical conduct of research with Aboriginal and Torres Strait Islander peoples please refer to the NHMRC 2018 document, Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities. https://nhmrc.gov.au/about-us/publications/ethical-conduct-research-aboriginal-and-torres-strait-islander-peoples-and-communities