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Privacy fact sheet 21: Young people and the My Health Record system

The My Health Record system allows young people (under the age of 18) to have a My Health Record. This fact sheet explains how authorised representatives — such as parents and guardians — can register (where the young person has not already had a record created for them) and manage a My Health Record on a young person’s behalf. It also explains how young people can take control of and manage their record.

The My Health Record system opt-out period commenced on 16 July 2018, and you now have until 31 January 2019 to advise the Australian Digital Health Agency if you do not want a My Health Record to be automatically created for you. Although the My Health Record system has previously been a self-register model, every individual with a Medicare or Department of Veterans’ Affairs card who does not already have a record will now be automatically registered to have a My Health Record, unless they choose not to have one.

For further information about the My Health Record and what to do if you don’t want a record created, visit the My Health Record website or call the My Health Record helpline on 1800 723 471. You can also read the OAIC’s opt-out FAQs.

What is a My Health Record?

A My Health Record is an online summary of your health information, such as medicines you are taking, any allergies you may have and treatments you have received. It was previously known as a Personally Controlled Electronic Health Record (PCEHR) or eHealth record.

Your My Health Record allows your doctors, hospitals and other healthcare providers (such as physiotherapists) to view your health information, in accordance with your access controls. You are also able to access it online yourself.

As noted above, the My Health Record system opt-out period commenced on 16 July 2018. This means, unless you choose not to by 31 January 2019, a My Health Record will be automatically created for you.

To find out more about the My Health Record and how to opt-out, visit the My Health Record website or call the My Health Record helpline on 1800 723 471.

Information for parents and guardians

How do I opt-out a child from having a My Health record created?

If a child under the age of 18 is listed on your Medicare card and you have parental responsibility for the child, you will be able to opt the child out between 16 July 2018 and 31 January 2019 via the online portal or Help line (1800 723 471). If the child is not on your Medicare card, you will be required to provide other evidence of your parental responsibility, such as a birth certificate, court order or parenting orders in order to opt-out. Where no one has parental responsibility for a child, a person with legal authority can opt-out a dependant under 18. Where there is no one with parental or legal authority for a child, an otherwise ‘appropriate’ person can opt-out a dependant under 18. You will need to support your claim to be an ‘appropriate person’, for example, with a statutory declaration. To find out how to opt-out a child who is not on your Medicare card, visit the My Health Record website or call the My Health Record helpline on 1800 723 471.

How do I become an authorised representative if a child was not opted-out?

If a child is not opted-out and therefore has a My Health Record created for them, you can apply to become an authorised representative for that child. As an authorised representative, you will be able to manage the child’s My Heath Record on their behalf. This includes determining which healthcare providers may access it and whether any other persons (including the child) may access it. It is important to understand that if the child is listed on your Medicare card and you have parental responsibility for the child, you will not automatically become the child’s authorised representative. To find out how to become an authorised representative for a child, visit the My Health Record website or call the My Health Record Help line on 1800 723 471.

How do I register a child for a My Health Record?

For children born after 31 January 2019, you will need to make an active decision about whether you would like to register your child for a My Health Record. You can do this through completing the relevant part of the Newborn Child Declaration form, provided in the Parent Pack from your hospital or midwife after your baby is born.

If you do not register your child through the Newborn Child Declaration form, you can later register your child through your MyGov account, by calling the Help line on 1800 723 471 or by asking your healthcare provider to assist with registration. Similarly, if your child was opted-out during the opt-out period, you can later register your child using the same mechanisms. You must have parental responsibility for a person under 18 to register for a My Health Record on their behalf.

A person with parental responsibility is generally the child’s mother, father or guardian. The My Health Record System Operator (the Australian Digital Health Agency) may also consider you to have parental responsibility in some other circumstances.

To register a child you will be required to provide evidence of your parental responsibility and prove your identity.

Once the Australian Digital Health Agency registers the child, you will become their authorised representative and will be responsible for managing the child’s record.

More than one authorised representative can manage a child’s My Health Record (for example, both parents of the child may be authorised representatives). For more information on registering a child, please visit the My Health Record Register a child for a My Health Record page. For more information on what constitutes parental responsibility, please visit the My Health Record Act on someone’s behalf as an authorised representative page.

Including Medicare information in your child’s My Health Record

When you register a child, or become an authorised representative for a child that had a My Health Record created for them, you can consent to the inclusion of Medicare information in their My Health Record if you wish. This includes Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) data.

If you consent to the inclusion of this MBS and/or PBS data, when the child turns 14, you will not able to choose the Medicare Information Settings for that child, and Medicare information will no longer be accessible in their My Health Record. This is because a child can take control of their My Health Record when they turn 14. New Medicare information will cease to be included in a young person’s My Health Record once they turn 14. This is in line with existing Medicare policy to keep this information private from parents or others without the express consent of the young person. However, information that was previously included will remain in the young person’s My Health Record.

MBS and/or PBS data will only be made available again if the child takes control of their record and consents to the inclusion of this information.

For more information on the Medicare data that can be included in the My Health Record please see the OAIC’s Privacy fact sheet 22: Medicare and your My Health Record.

Information for young people

Your parent(s) or guardian can register you for a My Health Record on your behalf up until you turn 18. When they register you, they will be your authorised representative, which means they will be responsible for managing your record. They will determine which healthcare providers can access it and whether you can access it.

The Privacy Act 1988 does not set an age at which you are considered to be capable of making decisions about how your personal information is handled. However, the law recognises that competence varies in young people. In some cases, including in relation to the My Health Record system, a young person may be considered capable of making decisions for themselves from the age of 14. Generally, a young person is deemed legally competent at the age of 18.

Your choice to opt-out

Your parent(s) or guardian can opt-out of having a My Health Record created for you during the period 16 July 2018 to 31 January 2019. However, if you are 14 or older during this period you may decide to opt-out for yourself via the online portal or Help line (1800 723 471). You will need provide certain identity information to complete the opt-out process, such as your Medicare number.

If you are under 14 and would like to opt-out, you will need to call the Help line (1800 723 471) and supply evidence to the Australian Digital Health Agency that you are capable of making decisions about your healthcare. To find out how to opt-out, visit the My Health Record website or call the My Health Record Help line on 1800 723 471.

When you turn 14

When you turn 14 you are presumed to have capacity to make decisions about your My Health Record. From this age you can register for a record or take control of your existing record, which may have been created for you if you or your parent(s) or guardians did not opt-out. If you choose to manage your own record, you can decide whether to allow your parent and/or legal guardian access as a nominated representative.

If you choose not to manage your existing record, your authorised representative will continue to manage it until you turn 18.

Before you turn 14

If you are under 14 and would like to take control of your existing My Health Record or register for a record, you will need to prove to the Australian Digital Health Agency that you can make decisions about your healthcare and manage your record. This will be determined on a case by case basis. Evidence for this could include documentation from your healthcare provider supporting your request.

How to take control of your My Health Record

Once you turn 14, you can take control of your existing My Health Record. You can do this through the MyGov website (follow a similar process for first time registration). You can also take control of your record by calling the Help line (1800 723 471). If you are aged 14 to 17, you need to provide certain identifying information to take control of your record, but you do not need to prove your capacity.

If you are under 14 and wish to take control of your existing My Health Record, you will need to supply evidence to the Australian Digital Health Agency that you are capable of managing your My Health Record by calling the Help line (1800 723 471).

Automatic cancellation of authorised and nominated representatives

When a young person turns 18 or takes control of their My Health Record, the Australian Digital Health Agency will cancel the access of all their authorised and nominated representatives. If the person wishes to retain any representatives, they will need to set this up in their record.

If a young person lacks capacity to make their own decisions, an authorised representative can continue to manage the record after they turn 18. If an individual wants to apply to be an adult’s authorised representative, they will need to provide evidence to the Australian Digital Health Agency that the adult lacks capacity to make their own decisions, and that they are authorised by law or are an appropriate person to act on their behalf.

More information

For more information on protecting your privacy on the My Health Record system, please see the OAIC’s Privacy fact sheet 15: Tips for protecting the personal information in your My Health Record.

For more information on the OAIC’s role in the My Health Record system, please see the OAIC’s Privacy fact sheet 18: The OAIC and the My Health Record system.