By John Stapleton
Whether you have a heart condition, diabetes, a rare blood disorder or are in fine health, this is all information which could be potentially turned to profit.
And now experts fear your private medical records could soon be available to the highest bidder.
A scandal has arisen in the wake of the so-called eHealth Bill, which passed into law this month amidst considerable controversy. The law now creates an opt-out not opt-in strategy for all medical records, meaning the health histories of almost all Australians will soon be online.
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Critics fear that the data could be easily hacked. Trials of the system, involving one million Australians, are set to begin in both NSW and Queensland early in the new year.
In the most recent developments, the Federal Health Department has just begun a tendering process by issuing what is called a Request for Expressions of Interest (REI) for so-called “secondary usage” of health data.
The move has outraged privacy advocates.
The Health Department’s REI requires respondents to “deliver a framework for the secondary use of My Health Record system data, previously known as Personally Controlled Electronic Health”.
A spokeswoman for the Federal Department of Health told The New Dailythat under the Act the department was obliged to prepare and provide de-identified data for research and public health purposes.
“Use of aggregated and de-identified data for secondary purposes can support the capacity, quality, safety and delivery of healthcare,” she said.
Despite direct questions from The New Daily, neither the Health Minister nor the Health Department would rule out the possibility of the data becoming available to insurance and pharmaceutical companies.
Visiting Professor of Law at UNSW Roger Clarke told The New Daily the actions of the government were downright “scary”.
“They are taking data which has to do with your health and using it for other purposes,” he said.
“Look at what they are saying they are going to do with your private confessions to a doctor.”
Professor Clarke said many people had a condition they would prefer others didn’t know about.
“Those records are going to turn up in more places; sure there’s not a name, but a lot of identifiers there. At the very least a postcode, age, gender.
“It is very easy with rich data like health data to reconstruct who it relates to. Anyone who does any decent homework will be able to identify the patient.”
Professor Clarke said insurance companies had a track record of trying to find exactly this sort of data, and were potential buyers. But there was also a capacity for blackmail, even with politicians competing to find ways to discredit each other.
“If you can get hold of data about psychiatric treatment, any rumour which can be spread with any sense of credibility can have a big impact on the way in which democracy works. Money can be made, business can be done.”
While the Health Department argues that the data has been “de-identified”, the Privacy Foundation says it is a relatively easy matter to cross-match the information with other data sets, thereby identifying individuals. Insurance companies could then, for example, determine your life insurance policy based on information told in confidence to a doctor.
Chair of the Australian Privacy Foundation’s Health Committee Dr Bernard Robertson-Dunn told The New Daily the government was looking for ways to mine everybody’s health data.
“Secondary use they call it,” he said. “Others call it dangerous and vague. The reasons why they are doing this are less than clear. Secondary usage can result in risks and we call on the Health Department to be transparent in their plans.”
Dr Robertson-Dunn called for a complete re-evaluation of the government’s eHealth strategy, saying the government had failed to learn from the failure of similar schemes overseas.
“There has always been a suspicion that the government wants to get its hands on Australian health data for purposes other than health care,” he said.
“Any agency or private sector company that has data on individuals will be able to take de-identified data and cross-match it with data from the My Health Record system.
“Experts in big data have suggested that successful matches can be achieved in about 80 per cent of cases. The more data they have the better the chances of matching.”