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Further implications

The long-term fate of the My Health Record system remains unclear. Though amended enabling legislation has passed the Senate, the system's introduction has been sufficiently vexed to suggest there will be little public tolerance of any misuse of the data.
British experience with a similar system, care.data, suggests that public confidence is vital if the system is to survive. The independent reviewer of Britain's care.data program, Dame Fiona Caldicott, observed, 'Building public trust for the use of health and care data means giving people confidence that their private information is kept secure and used in their interests.' The care.data system's well-publicised blunders forfeited that public trust. After the Caldicott report was published, care.data was abandoned.
No government is likely to take the political risk of continuing a system such as My Health Record once the electorate has lost faith in either its efficacy or the security of their data.
My Health Record has got off to a shaky start. The federal Health Minister, Greg Hunt, has repeatedly defended it against accusations that there needs to be legislative change to make the system more secure, only to then have to backtrack and, as in the case of police access to the data, amend the laws governing My Health Record.
It would appear that the initial legislation creating the My Health Record was not well enough considered. Critics of the current system, including many medical practitioners who support it in principle, cannot endorse it in practice because of what they perceive as its present weaknesses. This is the position of Kerryn Phelps, former president of the Australian Medical Association and currently Independent member for the federal seat of Wentworth.
There has a raft of demands for legislative reform. The recent Senate Inquiry into My Health Record resulted in dissenting findings from both the Labor and Greens committee members. Labor called for further amendments explicitly to rule out access to My Health Record data for private health insurers, even if data is de-identified, plus a covenant to prevent privatisation of My Health Record records-keeping or outsourcing their maintenance. The party also signalled its intention to seek further privacy enhancements.
The uncertainty surrounding the new scheme has lead to repeated extensions of the closing date for the opt-out period for My Health Record. The federal government has now extended the opt out period to January 31, 2019. On October 24, 2018, it was revealed that more than 1.1 million people had now opted out, up from 900,000 on September 12. Labor has sought a twelve month extension of the opt out period.
In a statement made on November 14, 2018, Labor's health spokeswoman, Catherine King, claimed the Coalition had 'seriously undermined public trust' in the My Health Record system with a 'botched rollout'.
King argued that a 12-month extension of the opt-out period would allow a further public information campaign so Australians can 'make a fully informed choice' about whether to opt out.
King further called on the government to ask the privacy commissioner to review the My Health Record system and promised Labor, if elected, would do so. That review would consider the balance of utility for clinicians, patients and carers with the privacy of individuals with health records, and protections for vulnerable people including minors and families fleeing domestic violence.
Despite the ongoing contention, on 26 November 2018, the Australian Parliament passed the My Health Records Amendment (Strengthening Privacy) Bill 2018.
These measures allow Australians to opt in or opt out of having a My Health Record at any time during their life. Records will be created for every Australian who wants one after January 31, 2019. After this date, a person can delete their record permanently at any time. Under the amended legislation, Australian Digital Health Agency will not approve the release of an individual's personal or health information to a third party except where it is related to the provision of healthcare or is otherwise authorised or required by law. This amendment is intended to prevent insurers or employers accessing the data. Harsher fines and penalties will apply for inappropriate or unauthorised use of information in a My Health Record. Civil fines will increase to a maximum of $315,000, with criminal penalties including up to five years' jail time.
The government has pledged 'We will continue to work and consult with relevant stakeholders to continually reduce misuse of the My Health Record system.' It remains to be seen how much tolerance there will be within the community if, once the system is in place, there are significant or repeated instances of misuse.