Reading the Govt response (dataavailability.pmc.gov.au) to the Productivity Commission's report on Data Availability and Use is fairly depressing, if you still care about privacy that is.
There's a hint as to where the response is heading on page 2, which contains just 2 quotes, one of which is "Some 91 per cent of Australians would be willing to share their de-identified medical data if it went towards research purposes." (Research Australia 2016) a bold claim...
from a survey that actually asked this question: "For which of the following would you be willing to share your personal health information if you could not be individually identified? Mark all that apply."
The five options were:
1. To advance medical research
2. So health care providers can improve patient care
3. So public health officials can better track disease and disability and the causes
4. None
5. Not Sure
1. To advance medical research
2. So health care providers can improve patient care
3. So public health officials can better track disease and disability and the causes
4. None
5. Not Sure
Important point to note, the question asks about a context in which there is an absolute guarantee that the individual is not identifiable. Yet the quote mentions de-identification, which provides no such guarantee, at best it reduces the risk, at worst it is useless.
And how big was the survey? 1040 people, completing an online survey, in which they were paid in points (1pt~1 dollar). If you want to know what someone thinks about privacy, the fact they are completing an online survey in exchange for points is a pretty good clue it isn't a lot
