Privacy and the use of health data for research

We reviewed resources for researchers interested in privacy issues surrounding secondary use of health data for research. These included applicable privacy regulations and available information on privacy perception in Australia. The review is timely because the current Australian Population Health Research Network infrastructure investments are likely to attract new researchers to the field.

We used Australian federal, state and territory regulations and programs, polls and surveys, public speeches and academic literature, and some international resources.

We identify four themes (de-identification, consent, bias and participation) emerging as areas of concern from the review, and discuss issues relevant to these themes. We provide arguments that excessive privacy regulation has a negative effect on public health research.

There is little evidence of privacy complaints or breaches in health research, but significant concerns about consent and de-identification appear to persist in the community. New researchers need to take account of privacy regulation and may wish to take account of privacy perception when designing study and consent processes.