The new deadline for opting-out of My Health Record is fast approaching.

If you don’t already have a My Health Record, and do not want one created for you, you will need to opt-out by 31 January 2019. You can do this online. You will need to have you Medicare card and driver licence (or other form of identification) to complete the opt-out process.

If you would like a My Health Record, you do not need to take any action. One will automatically be created for you.

In this blog, we discuss the  pros and cons of My Health Record, which may affect your decision whether to opt-out before 31 January 2019, or let the Government go ahead and create a record for you.

What is a MHR?

My Health Record (MHR) is an online summary of your health information that the Australian Government will collect and maintain. You, your doctor and other healthcare providers can access your My Health Record. It will include medical details such as the treatments and medications you have received.

The decision to make MHR an ‘opt-out’ process (rather than an ‘opt-in’ process) has been controversial. Since the system was announced, the Government has suggested several changes to address the public’s concerns about who can see the data, and to allow people to permanently delete their record.

Really, what we are seeing is an expansion of the Government’s official health record program. The original ‘Personally Controlled Electronic Health Record’ (PCEHR) program was launched in 2012 as an opt-in system, with very low uptake by the public. The current push is to expand the system to make it opt-out  by default, everyone has a record made for them unless they specifically request not to have one.

These are the current MHR statistics:

• About 6 million people are already using the system.
• About 1.15 million people have decided to opt-out.
• About 17 million people are expected to be automatically enrolled once the deadline passes.

Benefits of having a MHR

For your healthcare provider to gain access to the MHR system, they must work for an organisation registered with the MHR System Operator, use clinical software and have proper security identification.

Giving doctors access to your medical records could be lifesaving in an emergency. It might also prevent unnecessary duplication of tests such as blood tests and MRIs. MHR may give doctors more complete information about your medical history and help them to better diagnose illness and recommend treatment.

You will have a certain level of control over your record. You will be able to see who has viewed your records by checking the record access history. Your employer and insurance provider won’t be able to ask to see your MHR and can’t ask you to share information with them either.

The Government and people they allow may use your information in a de-identified form (which means you will be anonymous) for research. You can tick a box to opt-out if you don’t want your data used this way. Organisations including pharmaceutical companies may apply to access the data.

People who are most likely to benefit are those who have complex health conditions; take multiple prescription medicines; get treatment from various doctors and other health professionals; or have difficulty remembering or communicating the details of their medical story.

Drawbacks of having a MHR

Since the opt-out system was announced, the Government has been under pressure to improve the security of the system and extend the opt-out deadline to allow promised amendments to the MHR legislation to be passed into law.

Federal Health Minister Greg Hunt agreed to extend the MHR opt-out deadline to January 2019 after the system crashed in the lead up to the previous November 2018 deadline.

This extension of time allowed the Government to pass important privacy measures aimed at strengthening the MHR legislation.

The changes include tougher penalties for those that misuse the system, strengthening provisions to safeguard against domestic violence, prohibiting employers from requesting and using health information from an individual’s MHR and that no health information or de-identified data be released to insurers (see: Media Release 15 November 2018).

The Senate also passed amendments that law enforcement agencies can only access a person’s MHR with a warrant or court order and anyone who chooses to cancel a record at any time will have that record permanently deleted.

These amendments address some concerns about MHR, however there are still potential drawbacks.

Registered health providers and their staff can see your record. You can limit the providers who can see your record by placing restrictions on it however, these controls can be overridden in an emergency.

Security experts acknowledge the potential benefits of having a centralised record system but warn that the safeguards could be breached which could expose sensitive information. Any online record is susceptible to hacking and data breach. The Australian Digital Health Agency annual report which detailed the breaches, noted that the digital record-keeping system sustained 42 data breaches in the past year. These were not ‘purposeful or malicious attacks’ but did lead to the unauthorised exposure of personal information.

These are all serious concerns and, so far, we still do not have a sufficiently clear picture of what MHR will look like and how much control we will have over our own sensitive information once it is created.

Conclusion

Whichever way you decide to go, we recommend you make an active decision. Carefully weigh up the benefits or otherwise of taking part in this centralised health record system.

Here are some resources for further reading:

• My Health Record official website
• Office of the Australian Information Health Commissioner fact sheet