“Today the Government worked with the Senate crossbench to extend the opt-out period for My Health Record,” said health minister Greg Hunt in a statement on Wednesday afternoon.
He confirmed that the opt-out period, due to end this Thursday, will now end on January 31. This gives Australians nearly seven more weeks to opt out of the controversial centralised digital health records system before a record is created for them automatically.
Until now the government had been blocking all calls for an extension.
On Monday, the Senate voted to call on the government to extend the opt-out period indefinitely, and to halt to roll-out of the system until “public confidence [had] been restored”. Hunt ignored it.
On Wednesday morning, Senate debate on the My Health Records Amendment (Strengthening Privacy) Bill 2018 began. A Labor amendment to extend the opt-out period for a further 12 months was defeated 32-30. However minutes later, an amendment moved by One Nation leader senator Pauline Hanson for the January 31 extension was passed on the voices.
“Labor’s plan to delay and derail the roll-out of the My Health Record was blocked today,” Hunt said, continuing his habit of framing criticism of the My Health Record system as party politics.
“We thank the crossbench for not delaying this important policy change as Labor tried so desperately to do,” he said.
Government amendments propose Data Governance Board
They include strengthening the safeguards in cases of domestic violence; banning employers from requesting and using private health information; and banning health information being released to insurers, even if de-identified.
The government has also proposed the establishment of a Data Governance Board to oversee the secondary use of My Health Record data — that is, uses beyond the health records needs of individuals.
The board would:
- Assess applications for the collection, use or disclosure of de-identified data and health information for research or public health purposes;
- Guide and direct the ADHA in preparing and providing de-identified data and health information; and
- Take steps “to ensure the ongoing protection of de-identified data and health information used by, or disclosed to, persons for research or public health purposes and that the data and information is being used and disclosed only for those purposes”.
The board would consist of a chair and deputy chair, plus between 7 and 10 other members. This would include representatives of the ADHA and the data custodian, which is the Australian Institute of Health and Welfare, as well as an Aboriginal or Torres Strait Islander person.
All board members would need to have skills or experience on, or knowledge of, at least one of population health and epidemiology; medical or health research; health services delivery; technology; data science; data governance; privacy; or consumer advocacy.
This proposal would seem to address some of the concerns raised by the Senate Community Affairs References Committee. The board would be able to oversee the so-called “secondary use framework” in a more interactive way than writing the rules themselves into legislation.
Some of the Senate committee’s 14 recommendations have still not beed addressed directly, however, in particular the call to apply access codes to each My Health Record as a default.
Coalition senators had included a dissenting statement in the Senate report, claiming among other things that this would “in practical terms effectively return the My Health Record to an opt-in participation model”.
The government has consistently and strongly rejected the call for an opt-in model.
As of late Wednesday afternoon, a Greens amendment to revert My Health Record to a voluntary opt-in system was still to be debated, as had this new tranche of government amendments