E-health privacy attracts concern, not complaints

A CSIRO privacy researcher has blamed "leading questions" for the persistence of public e-health concerns despite there being few actual complaints about researchers' use of the data.

Researcher Christine O'Keefe studied Australian regulations and perceptions about using health data in medical research.

The study came as the Government developed a $62 million Population Health Research Network, expected to link scientists with e-health data sources around the country.

By 2012, the network would bring together various statewide "data linkage units", which each stored de-identified data from hospitals, government and academia.

Patients' consent was not required for their data - stripped of personal information like names and addresses - to be included in the network.

O'Keefe studied federal, state and territory regulations, as well as surveys by the Department of Health and Ageing, Australian Medical Association, Office of the Privacy Commissioner and Australian Consumer Association.

Although "de-identification doesn't mean that data wouldn't reveal confidential information", she said there were sufficiently strong restrictions around how and by whom the data would be used.

"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," O'Keefe reported.

"New researchers need to take account of privacy regulation and may wish to take account of privacy perception when designing study and consent processes."

O'Keefe said "leading questions" in consumer surveys may be to blame for a "gap between perception and what is actually happening".

Consumers may not be familiar with the term "de-identified data", she noted, citing surveys that found more than half of respondents wanting consent to be sought for the use of such data.

She said Australia had some of the world's best processes for "secondary use" of e-health data - that is, using the data for research.

People were generally "very happy to have their data used for research", she told iTnews, although they were more reluctant to provide such data to pharmaceutical companies and other commercial ventures.