Are privacy laws killing Australians?

Are Australia's privacy laws slowly killing Australians by preventing medical professionals gaining access to patient information?

People fear the consequences of information falling into the wrong hands and therefore, quite rightly, feel the need to defend privacy. But could that "fear", as one doctor calls it, be stopping information reaching hands that could heal us?

This week the Victorian government announced it will pay Deloitte AU$1.3 million to develop an Australia-wide e-health strategy, to introduce online referrals, e-prescribing, and electronic health records.

It sounds like a good idea but it will be interesting to see what impact it will have on the adoption of electronic health records in Australia. Medical professionals appear to want to be able to use electronic records but current privacy laws are preventing it.

"If you go from one hospital to another, the only way your data is going to get from one to the other is if the doctor writes a letter. And there is no electronic sharing whatsoever," said Dr Marienne Hibbert, director of the cancer research project, Biogrid — also part-funded by the Victorian government.

Due to what she believes are fears about privacy, Australian clinicians — at least those participating in the Biogrid project who treat cancer patients — are hamstrung in their efforts to use widely-dispersed information in order to improve the lives of patients, and it's all due to privacy.

"There's a real danger of privacy being too protected — it's people's perception of the risk... It's way out of... Well, it's fear," she said. "If people weren't worried, for a start, I think there'd be much more sharing of patient data for clinical use."

Biogrid currently pulls together de-identified cancer patient data, sourced from over 30 hospitals in Australia, New Zealand, the US, UK, Brazil and Malaysia.

But while researchers are able to learn from anonymised data collected in the Biogrid project, the clinicians who treat patients are unable to make use of it — primarily because the information needs to be attached to a patient's name to be useful. What could be achieved if this were permitted has implications that are far reaching and quite immediate for cancer treatment, according to Hibbert.

"[Biogrid] is research and we can actually integrate data much more effectively than is available for clinical care.

"My clinicians that are involved in this are really frustrated about not having any way of viewing identified clinical information across sites," she said.

If there was a way of providing a "secure and protected" view of cross-site identified information — say across a single tumour stream — clinicians, who are often dispersed amongst several hospitals, could improve their management of cancer treatment.

"Cancer patients are coming and going all the time, they often have had surgery at one site, oncology at another and then radiotherapy elsewhere. If you can provide the clinical view to the clinicians, that would be really helpful. Doctors get so frustrated because they don't have that combined view," said Hibbert.

It's a bit hard to say that if doctors could access identified information from other sites it would reduce the number of cancer related deaths in Australia but it would seem the logical — especially if we are to believe the government's message that the fight against cancer will be won by early detection and surveillance.

But cancer research and saving lives is not the only thing that's being held back. Today, Australians would be hard pressed to use services such as Google Health and Microsoft's Health Vault since the only copy they likely have of their medical history is stuck in their head.

Where is your medical history stored?