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ResourcesHuman Research EthicsFlying Blind – the Australian Health Data Series: The Ethics Quagmire: Case Studies (Uma Srinivasan | August 2017)

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Flying Blind – the Australian Health Data Series: The Ethics Quagmire: Case Studies (Uma Srinivasan | August 2017)

 


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Flying Blind is a series of three reports dedicated to uncovering the acute levels of data fragmentation existing at all levels of Australia’s health landscape.

In Flying Blind 2, we have been highlighting the tortuous route of the researcher’s journey, as they negotiate the ethics processes and the myriad data sources required for their research. In the next few blogs, Australian health and medical researchers who have been through the journey, present real-life case studies and  back-of-the-envelope calculations of what it takes to identify existing data sets and negotiating the ethics processes, to link the data sets to support their research.

What is sad for Australian health research is that these numbers do not reflect reseachers’ time spent in actually performing research!

We hope the case studies will shine a light on the complexities and the lack of efficiency and transparency around tapping into de-identified pre-existing administrative data sets from multiple states and federal health data sources.

Read the rest of this discussion piece

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