All that personal medical info you hand over? No one's using it

Medical health
Are you worried about where your personal information given to your doctor will end up?

How often have you handed over quite detailed personal information when you’ve gone into hospital? Have you wondered what happened to all that information?

The unfortunate answer is probably nothing.

A report by the Grattan Institute has revealed that information gathered by hospitals is often poorly collated, and often your doctor or the other experts treating you don’t even get to see it. 

What would that data be useful for, if used properly? Better safety in hospitals, for starters.

Grattan Institute health program director and report co-author Stephen Duckett says safety scandals in Australian hospitals are “depressingly frequent”.

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“Australia needs to reform the way we collect and use information about patient safety, to reduce the risk of more scandals and tragedies in our hospitals,” he says. “The health system is awash with data, but the information is poorly collated, not shared with patients, and often not given to the doctors and hospital managers responsible for keeping patients safe.

“Hospitals boards are often blissfully ignorant of the level of safe care being provided in their own hospitals.”

The expert, who led an investigation for the Victorian government after seven babies died at Bacchus Marsh Hospital in 2013 and 2014, warns that there’s no public reporting of safety data about private hospitals in Australia either, and private hospitals are left outside state government monitoring of hospital safety.

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In his report, he says that to ensure hospital safety data is more useful, it must be more trustworthy, relevant, and accessible.

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“The many different data sets should be linked, and the information should be presented more clearly so doctors can act on it and patients can understand it,” Duckett says.

Duckett also feels more data should be collected, and shared, not just for the medical providers’ benefits, but for yours.

“Australia has dozens of collections of detailed data about particular diseases or treatments – for example the Australian Genetic Heart Disease Registry, the Australian Bleeding Disorders Registry, and the National Joint Replacement Registry – but they operate independently,” he explains.

“This means important information about an individual patient with multiple conditions – for example someone with a knee problem and heart disease – is kept in separate data sources.”

Would you be happy to provide more personal health information if you knew the data was going to be shared in a useful way? Have you handed over information before, only to find the people treating you hadn’t seen it?