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Cancer registry privacy fears

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The AMA has raised concerns sensitive patient information will be in the hands of a for-profit operator following the Federal Government’s decision to award a $220 million contract to Telstra to build and operate a national cancer screening register.

The AMA has told a Senate Committee inquiring into the decision that although it did not have any in-principle objection to outsourcing clinical registries, it was worried by Telstra Health’s lack of experience in the field, and the implications of giving a profit-making enterprise access to commercially valuable and highly sensitive personal information.

“Telstra Health does not have direct previous experience in operating registries of this kind,” the AMA said in a submission to the Senate Standing Committee on Community Affairs.

Under the Government’s plan, data from nine separate cancer screening registers will be consolidated into a single National Cancer Screening Register containing the bowel and cervical cancer screening records of all participating Australians. Information on the register will be used to support the expansion of bowel cancer screening to cover almost 10 million people, and cervical screening for 1.4 million women.

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The AMA said it would be “more comfortable” if the registry, which will contain sensitive information about a person’s cancer risk, medical procedures and health status, was in commercially disinterested hands.

“Given the potential commercial value of the data contained in the register, the AMA would be more comfortable with it being operated by Government, a tertiary institution, or not-for-profit entity that has little interest in how the data in the register might otherwise be used,” it said. “This would go a long way to allaying concerns about the secondary use of data for commercial reasons.”

The AMA’s concerns were echoed by health policy expert Professor Lesley Russell, of the Menzies Centre for Health Policy.

“Telstra Health will have the ability to access data from the Australian Immunisation Register, from the Australian Institute of Health and Welfare, and from Medicare claims, and the registers will be integrated with GPs, specialists and pathology laboratories,” Professor Russell said in a submission t the Senate Committee.

“Will the Australian population be comfortable with the fact that a for-profit business knows whether they have had a full or partial hysterectomy, if they are at risk of bowel cancer…and when they last had a colonoscopy?

“Will GPs, specialists and diagnostic labs be happy that Telstra Health can, at least potentially, scrutinise their diagnoses and treatment?”

Privacy Commission Timothy Pilgrim said the centralisation of such sensitive information in a database that can be accessed from many points posed “a number of security and privacy risks”, and suggested the operation of the register be subject to additional requirements under the Privacy Act.

But Telstra Health said it was “uniquely placed” to provide the register, with the size, scale and expertise to ensure its secure and successful operation.

It said Telstra already manages “extremely sensitive” data for hospitals, financial institutions and Government, and all information contained in the register would be hosted in Australia and controlled by the Government.

“Telstra will build and operate the Register in accordance with strict data security requirements determined by the Australian Government. These are the same requirements that would apply to any Australian Government or not-for-profit agency.”

Concerns have also been raised about how Telstra Health was awarded the job, and what might happen to the register and the data it contains when the five-year contract expires.

Telstra said it won the contract following an open tender, but the AMA is among those complaining the process has been opaque.

“There has been a lack of transparency around the process for awarding this contract,” it said. “The awarding of such a contract to an entity that has hitherto had no direct role in establishing or operating a register of this kind sets a challenging and potentially troublesome precedent.”

Professor Russell said the basis on which Telstra won the contract over other applicants had not been disclosed, and the Government had not explained why other entities such as the Department of Human Services, the AIHW and Cancer Australia had not been considered for the work.

“What happens when the Telstra Health contract expires in five years’ time – will it automatically be renewed, will it be up for competitive bids? How will this contestability affect the continuity, ongoing resources and work needed for the registers?” she asked.

Shadow Health Minister Catherine King said “clearly there are questions that need to be answered about handing these records to a for-profit company with no experience in this area”.

“This is sensitive, personal information about people’s health – we need to get it right,” she said.

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