When the opt-out period for My Health Record (MHR) opened on 20 July, suddenly it seemed the whole nation cared strongly one way or the other. So much so that the three-month window to opt out was extended to four months to allow extra time for debate.
That window is set to close next week, with calls for another extension falling on deaf eras, and the pressure on the opt-out helpline in recent days has reportedly been immense.
If you want to opt out, go to this government website link.
The aim of MHR makes sense – to allow you and your healthcare providers immediate digital access to your medical history. Emergency treatment can be administered with far more certainty if medical staff are aware of any issues.
The fears? That a wealth of personal information might be hacked, that privacy is not guaranteed and that agencies permitted to access data could pass on sensitive information.
So how far have we come over the past nearly four months?
The Senate Standing Committee on Community Affairs report into MHR was released in late October and recommended several changes relating to security and privacy concerns. Further amendments, including increased penalties for anyone misusing patient records, were announced by Health Minister Greg Hunt on Tuesday.
The changes, which are expected to go to the House of Representatives on 26 November, included:
- that access codes be applied to each My Health Record as a default and that individuals be required to choose to remove the code; and ability to override the code should be available only to registered healthcare providers in extraordinary and urgent situations
- an extension of the period for which a MHR can be suspended in the case of serious risk to the healthcare recipient, such as in a domestic violence incident
- that data likely to be identifiable not be made available for secondary use without an individual’s explicit consent
- current prohibition on secondary access to MHR for commercial purposes to be strengthened
- that no third-party be given access to an individual’s record without the patient’s explicit permission
- that access to MHR for data matching between government departments be explicitly limited to a person’s name, address, date of birth and contact information
- that no cached or back-up version of a record can be accessed after a patient has requested its destruction
- that the opt-out period be extended for 12 months.
The recommendations were supported by Labor and Greens committee members, but not by Coalition committee members.
The latest official data shows that 1.147 million people had opted out, up from 900,000 on 12 September. However the opt-out helpline was deluged with callers on Tuesday and blamed a technical glitch for a system crash.
The cost of an advertising campaign to promote MHR, according to the Australian Digital Health Agency (ADHA), had blown out from $5.45 million to $10.45 million after the opt-out period was extended.
The total communications budget for MHR was $27.8 million.
To refresh your memory, we present key points for staying with MHR and the concerns that may prompt you to opt out.
In YourLifeChoices’ 2018 Retirement Matters Survey, we asked members if they intended to stay in MHR or opt out. Of the 4820 respondents to this question, 64.5 per cent said they would stay in.
The key reasons given were:
- helps all medical professionals know my full medical history
- reasonably confident that my records will be secure and it will be useful for various medical professions to have access
- good to have my rare health issues easily accessible if I’m not being seen by my usual doctor.
Those who said they would opt out were overwhelmingly concerned about the privacy of their record. Typical responses were:
- don’t trust the scope of it or the security
- don’t believe it’s completely ethical at this point in time
- not secure and too many government agencies can access it.
The case for staying in MHR …
The Consumers Health Forum (CHF) says the advantages of a single electronic databank are significant, particularly for those with complex and chronic conditions and the elderly. CEO Leanne Wells says: “What is important to keep in mind is that MHR offers to healthcare the potential for the sort of digital benefits we take for granted in virtually every other area of modern life: instant and comprehensive communication of information.”
She says increased penalties, stronger safeguards against domestic violence, new protections against employers compelling employees to show their MHR and prohibition on use of MHR data by insurers were big improvements to the scheme.
Health policy Professor Jim Gillespie of Sydney University, says MHR is a “step towards empowering patients” and that in the five years of the precursor – the Personally Controlled Electronic Health Record system (PCEHR) – no security breaches were reported.
Palliative Care Australia (PCA) believes MHR will allow health professionals to provide faster and more efficient care for people and their families. PCA chief executive Liz Callaghan says: “People accessing palliative care services often have complex needs and … MHR makes it easier for those professionals to share information about medications, test results and care plans.”
Aged and Community Services Australia chief executive Pat Sparrow believes MHR is good news for older Australians, as well as aged-care facilities and their staff, carers and family members. “Older Australians need to be supported in healthy ageing and this streamlined approach to information sharing promises to improve the flow of information from hospital to home to residential aged care.”
Why you might opt out
Former AMA president and now member for Wentworth Dr Kerryn Phelps has condemned the way some third parties can access MHR. She says the secondary use or sale of patient data remained unresolved.
MHR is linked to a patient’s MyGov account, which stores personal information from interaction with Centrelink, Medicare and the Australian Taxation Office (ATO).
Patients can block certain parties from seeing their data with an access code, but you only have an access code if you explicitly ask for one and that code can be overridden in a medical emergency that requires life-saving treatment. Legal experts warn that individuals could be coerced to hand over their codes to potential employers and insurance companies.
Nigel Brew, director of foreign affairs, defence and security, said that under Section 70 of the My Health Records Act 2012, the ADHA can disclose health information when it “reasonably believes” it is necessary to investigate or prosecute a crime, to counter “seriously improper conduct” or to “protect the public revenue”.
Have you made your decision? Do you think anything has changed over the past four months?