Australia needs to link more healthcare data: MPs

Linking de-identified datasets from the likes of Medicare, hospitals and the Pharmaceutical Benefits Scheme would add billions into Australia's economy and give doctors and policy makers a better understanding of how people use the healthcare system, Australian parliamentarians claim.

A committee of cross-party MPs tasked with reviewing the value of health datasets found Australia had "untapped potential" to use data generated by the healthcare system for financial and societal gain.

The Commonwealth spent more than $63 billion - or 25 percent of all government tax revenue - on the healthcare system in 2013-14, and health expenditure has grown at a rate of 5 percent above inflation for the last ten years.

In this climate, more effective and cost-efficient policies should be "vigorously pursued", the report argued, citing a Lateral Economics report that suggested health-specific data could inject as much as $5.9 billion each year into the economy.

Linking de-identified data on births, deaths, immunisation, aged care, and Medicare claims, among others, could deepen clinicians' understanding of how patients use the healthcare system while informing government policy makers how to improve the delivery of health services, the report stated.

Privacy problems

While many respondents to the committee's inquiry pushed for the ability to link de-identified data from the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme specifically, current privacy regulation restricts such information from being combined.

In 2008 the Privacy Commissioner issued guidelines that only allow the linkage of MBS and PBS data when it is necessary to comply with the law; when eligibility for one of the programs is dependent on services provided by the other; or when Medicare believes linking the data would save someone from harm or death.

The data can also be linked if the individual in question gives their consent.

In its response to the inquiry, the Department of Health argued that community attitudes to data and privacy had shifted to a point where data is regarded as an asset that can be utilised, rather than one that needs solely to be protected.

Privacy Commissioner Timothy Pilgrim agreed the current legislation warrants review, given it had been created in a "different time" with "different community expectations".

"I think it is entirely appropriate to have that piece of legislation reviewed, to look for other mechanisms which may be able to make more efficient use of that information in terms of…freeing up data for good social policy purposes," Pilgrim told the committee.

"But at the same time I would then say that if we are going to do that, what can we build in to ensure there is the right level of protection about that information in a newer environment of how it is going to be used?"

Lack of transparency

The committee said it was "deeply concerned" that some government departments weren't entirely sure what datasets they held.

"It ought to be clear to both researchers and departments what data each department collects and what part of the department is responsible for data custodianship," the MPs wrote.

Departments should publicly list their datasets on their websites and on data.gov.au, the committee recommended, and publish a statement outlining their dataset approvals process.

De-identified datasets should by default be released "on an enduring basis", and departments should publicly report on data linkage performance benchmarks, it said.

More broadly the committee recommended the government review current privacy arrangements related to health data with the goal of linking more MBS and PBS de-identified datasets, while protecting privacy.

It also said the government should look at allowing state health bodies to link to Commonwealth data collections.

Australia could take cues from other countries with more mature data linking initiatives, the MPs said.

"The committee's intention is to strengthen health policy evaluation and development as well as medical research undertaken in the public interest whist ensuring effective protections for sensitive personal information," it wrote.