My Health Record: what to do if you missed the opt out deadline

By now most people will have heard about the government’s ‘My Health Record’ system. It’s the online summary of a person’s health information that can be accessed anywhere, anytime by them and their healthcare providers.

The scheme has been operating for the past six years on an ‘opt-in’ basis. That is, you only have a record if you signed up for one.

However, starting this year, the scheme will create default accounts for every Australian unless they opt-out.

If you missed the opt out deadline of 31 January 2019 and a record is created, you can permanently delete your record at any time.

Why it matters

The My Health Record scheme has obvious potential to improve health care outcomes. But it’s also important that you know what you are consenting to, who is accessing your records and for what purposes they can be used. By using an opt-out approach, if you do nothing the government can assume your consent.

But what are you consenting to? Which conversations with your doctor will be recorded and who can see those? For what purposes can the information in your records be used? And how safe is your online health data from hackers?

Unfortunately, the answers to some of these questions are still not clear and although the government has announced that they will strengthen the relevant legislation to protect people’s privacy, many people are deciding to opt out of the scheme.

Do you want a My Health Record account?

Whether you decide to opt-out or not will depend on your individual circumstances, but it is important to think about what is right for you and whether you want a My Health Record to be created for you.

The record can be a useful document archive that can be shared between health professionals to improve communication and health outcomes. For example, if your general practitioner has access to an up-to-date, centralised source of your health information, they will know what medication your specialist prescribed yesterday, or exactly when important test results are available, and they can adjust their management of your health conditions accordingly.

The record may also be beneficial in the case of an emergency. For example, if you were unconscious and required emergency medical treatment, healthcare providers would only need your Medicare number, surname, date of birth and gender to search for your record and could then identify your medical conditions, allergies or medications you were taking.

You may also find the My Health Record useful for your own purposes. For example, a centralised archive of your health and treatment information may reduce the administrative burden for people with chronic illnesses.

Nevertheless, these benefits need to be weighed against the concerns discussed above and you will need to decide whether a My Health Record account is right for you.

Who can access it?

When a My Health Record account is created, the default access setting is ‘open’ which means any health professional can access it for the purpose of providing ‘healthcare’. Under these settings, the healthcare provider would not need to ask for consent before access a patient’s record.

It is important to understand that the definition of ‘healthcare’ is quite broad and could cover a number of circumstances where a medical assessment is being undertaken outside of the traditional doctor-patient relationship. That said, the Federal Government has recently indicated that they will strength protections against misuse of the My Health Record, including clarifying that it cannot be accessed for employment or insurance purposes.

It’s also important to point out that you can change the default settings and restrict who accesses it and what appears.

What you can do

  1. Consider opting out

    If, on balance, you decide that you would prefer not to have a My Health Record account, you need to opt out by visiting www.myhealthrecord.gov.au

    The opt out period ended on 31 January 2019, but you can still opt out after this time and the account that has been created for you will be deleted.

    If you decide in the future that you want a My Health Record account you will still be able to register for one.

  2. Talk to your doctor about what does and does not get uploaded to the system

    You can request that your doctors include or not include certain documents in your My Health Record.

  3. Look at what records are included in your My Health Record account and consider whether you want to remove any of them

    You can ‘hide’ documents in your record so they are not visible to your treating doctors. You can also specify whether you want information from Medicare, Department of Veterans’ Affairs or the Pharmaceutical Benefits Scheme to appear in your My Health Record.

  4. Look at your security settings and consider setting up security codes and access notifications

    You can change the settings of your My Health Record account so that you can track what’s being uploaded to your record and who has accessed it. For example, you can:
  • Set a Record Access Code to give only to those that you want to give permission to access your records, or provide a Limited Document Access Code if you want to restrict access to certain documents;
  • Log into your account to see who has uploaded documents and modified or removed documents;
  • Set up an email or SMS alert for when someone accesses your record for the first time.

    Notably, privacy restrictions and access codes you have set can be overridden if access is required for an emergency or if there is a serious threat to public health or safety. However, healthcare providers won’t be able to see documents you have removed, or personal notes you have entered.

Ultimately, although the My Health Record scheme has obvious potential to improve health care outcomes, we all have a right to know how our personal information is shared and for what purposes it can be used. You also have the right to limit access to your personal information or to opt-out of the scheme altogether if you feel that is best for you.

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Amy Johnstone

Maurice Blackburn Melbourne
Amy Johnstone is an Associate in Maurice Blackburn’s medical negligence department in Melbourne. Amy graduated with a Bachelor Degree in Social Work in 2004, and went on to attain her Masters of Social Science (Policy and Human Services) in 2007, before completing her Juris ...

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