Public input sought on use of health record data

De-identified My Health Record data could potentially be used by researchers

A public consultation has begun on potential uses of de-identified data drawn from Australia’s national e-health record system.

The government in its May budget set aside $374.2 million for the expansion of the My Health Record system as it shifts to an ‘opt-out’ model. Under the new model, a health record will be created for every Australian citizen unless they request otherwise. (Once a record is created it can’t be deleted, just rendered inaccessible.)

Some 5 million Australians already have records.

Specialist consultancy HealthConsult has been retained by the Department of Health to develop a framework “for the secondary use of data held in the My Health Record system for research, policy, system use, quality improvement and evaluation activities”.

Secondary use is any use of the system for purposes other than providing healthcare to an individual; for example, research, policy analysis and work on improving health services.

Under My Health Records Act 2012 one of the duties the operator of the eHealth record system — the Australian Digital Health Agency — is “to prepare and provide de‑identified data for research or public health purposes”.

“Although, it is at a relatively early stage in its evolution, it is recognised that the My Health Record system could become one of Australia’s most comprehensive health data resources,” states a public consultation paper developed by HealthConsult.

A framework for secondary use of My Health Record data “will establish the guidance for the future potential use of data held in the My Health Record system for purposes that may include policy analysis, health services program development, research, quality and safety measurement, public health, performance management and to develop and improve healthcare services and treatments.”

An individual’s record can currently hold 20 categories of data, including discharge summaries, referrals, prescription records, letters from specialists, pathology reports, and diagnostic imaging reports.

The Department of Health last year came under scrutiny after it released improperly de-identified health data. In response to the snafu, the government has sought to make re-identification of ostensibly anonymised government data sets a criminal offence.

The government also faced questions about its management of Medicare data after a service offering the Medicare number of any individual was unearthed.

HealthConsult is accepting submissions until 17 November. The consultation paper is available online.

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