The ability of health researchers to unearth previously unsuspected health risks, trends and commonalities at a population level through matching information across different datasets is well attested. However, as more of this type of research is conducted, the spotlight is being shone on the barriers to accessing these data. Less well known are the complexities experienced by researchers working with datasets in an Aboriginal and Torres Strait Islander health context. We present the insights of a number of researchers, clinicians and public sector representatives who have extensive experience of data linkage in the Aboriginal and Torres Strait Islander health sector, on key issues and practical and ethical implications of utilising big datasets. Obstacles are further highlighted in the experiences of a national multicentre cancer cervical screening study. While researchers must at all times respect the individuals whose information is contained within these datasets, and abide by the legislative structures governing their use, measures to streamline data linkage processes are required. Realising the potential of existing health data that previously has not been available may underpin significant improvements in indigenous health and ultimately life expectancy.
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|Published - Jul 2016