DECIDE BEFORE 15 NOVEMBER 2018

You have a right to know how your personal health information is being handled and by whom. We are worried that many people affected by hepatitis B and hepatitis C may not yet know about a new type of medical record called My Health Record that is being put in place by the Australian Government. This information is to help you decide if you want a My Health Record created and if not how to tell the Australia Government you want to opt out.

BASICS

What is My Health Record?
My Health Record is an online database which keeps a summary of your personal health information in one place. It is designed to improve coordination of care by making your personal health details available to a range of health care providers you may come into contact with.

The Australian Government has a website which tells you more about it.

What is the difference between an opt in and opt out system?
My Health Record was originally an ‘opt in’ system and you had to agree before getting a My Health Record. That has recently been changed to an ‘opt out’ system, meaning the Australian Government no longer needs your agreement to create a My Health Record for you.

However, you still have the right to opt out and tell the Government if you don’t want a My Health Record created.

When is the deadline to opt out?
You only have until 15 November 2018 to opt out – to tell the Government you don’t want a My Health Record created. If you do not opt out by 15 November 2018, a My Health Record will be created for you.

BENEFITS

My Health Record is an online system which aims to improve the coordination of your healthcare needs across all health care providers. It may limit duplication of tests, help prevent drug-drug interactions, and save time in an emergency or situations in which you are unable to communicate. My Health Record brings information together in one place which, for example can include:

  • An overview of your health which your doctor provides (Shared Health Summary)
  • Test results (e.g. blood tests or scan results)
  • Your prescription details detailing the medicines you are taking
  • Hospital discharge summaries
  • Referral letters (e.g. from your GP to Specialists)
  • Medicare data, Pharmaceutical Benefits Scheme data and Australian Immunisation Register data can also be added

The Australian Government website provides further details of the benefits of My Health Record.

CONCERNS

Why are some people concerned about the My Health Record system?
Many people are concerned about how the My Health Record system will work as an opt out system.

Common concerns raised to date are:

  • Whether all Australians will have enough information by 15 November 2018 to decide if they want a Record created
  • Whether people know they only have until 15 November 2018 to opt out if they don’t want a My Health Record created
  • That once a My Health Record has been created for you (perhaps without you even knowing) a wide range of health care professionals will automatically be given access to your personal health information
  • That in certain circumstances the police, Government and other agencies can also gain access to your Record without your permission – for their own reasons
  • That copies of your personal health information are kept for 30 years even when you say you want to cancel your My Health Record
  • That the information contained in the My Health Record system may not be secure from hackers

We know that many people with hepatitis have concerns about other people knowing they have hepatitis, including health care professionals. People may feel they are being judged or treated differently to people who don’t have hepatitis.

You may prefer to keep your personal health information related to hepatitis just between you and one doctor. You may want to think carefully about whether a My Health Record is a good idea for you.

Are there any issues for young people aged between 14-17 years?
If you are under 18 years of age the Government will automatically create a My Health Record for you unless you (or your parents on your behalf) opt out before 15 November 2018. Also, your parents may choose to register you for a My Health Record and they will be able to see the contents of it.

Regardless, if you are between 14-17 years of age, you can take control of your own My Health Record or decide not to have one. For more information click here.

Are there particular concerns for people affected by family or domestic violence?
Yes there are.

If you are in this situation it is vitally important that you visit the Government website to find out what extra precautions you can take to protect your family’s safety.

RECOMMENDATIONS AND RESPONSES

What recommendations have been made for changes to My Health Record and how is the Government responding to the recommendations?
Two Senate Committees recently looked at concerns about My Health Record and made recommendations to the Australia Government.

The Community Affairs Legislation Committee recommends the proposed amendments to legislation are passed to provide better safeguards against agencies not involved in your healthcare accessing your personal health information for their own purposes and also to ensure the destruction of records if people say they no longer want a My Health Record. The full report can be found here.

In response to a question from Hepatitis Australia, the Minister’s office has said they intend to pass the amended legislation in the Senate during the week beginning 12 November if they have a majority of votes. The legislation will need to return to the House of Representatives if amendments to the bills are made, this cannot occur until the week beginning 26 November (after the last day to opt out on 15 November).

Hepatitis Australia also asked about the response to the other 14 recommendations to improve the My Health Record system made by the Senate Community Affairs References Committee. The Minister’s office said they are currently considering the report and will respond in ‘due course’, but no timeline was provided.

One of the most significant recommendations by the Community Affairs References Committee is to “extend the opt-out period for the My Health Record system for a further twelve months”. Hepatitis Australia strongly supports this recommendation as it will provide further time for the Government to fully consider and address the recommendations put to them before the 15 November 2018 opt out deadline.

The full set of recommendations made to the Australian Government by the Community Affairs References Committee can be found here.

MORE ABOUT PRIVACY

Which health care providers can look at My Health Record?
The system is designed to provide health care professionals and services such as pathology labs and pharmacies with all the information they need to provide you with appropriate care.

Your My Health Record will be set up to give all health care providers and all health care organisations unrestricted access to your personal health information. This includes your GP, hospital staff, specialists, other healthcare professionals, pharmacies and pathology labs.

Can information be added to my record without my consent?
Yes – your My Health Record will be set up to allow information to be added without your consent. This may include clinical information, prescription details or pathology test results.

Can I control access to My Health Record?
Yes – you can choose to limit access to specific documents (using a document access code) or to the whole of your My Health Record (using a record access code). You can also monitor who looks at your My Health Record. In an emergency, or where your or another person’s safety is a concern, health workers can ask for any access restrictions to be lifted for five days. For further information about this go to the Government website.

Can the information in My Health Record be used by researchers?
Yes – by default it can be used for research, policy and planning purposes. Use of identified data will be subject to strict ethics approvals.

If you don’t want your health information shared for public health and research purposes, you will need to:

  • Log in to your My Health Record through www.my.gov.au
  • Click the ‘Profile and Settings’ tab.
  • Scroll down until you see the ‘Secondary uses of data section’.
  • Click the button that says ‘Do not participate’.

Can the Police or other Government agencies look at any information on My Health Record?
There were concerns that the current law allows for information on individual My Health Records to be given to law enforcement agencies and other Government bodies without consent. In response the Australian Government has agreed to put forward legislation to prevent any information being provided to law enforcement agencies and other Government bodies unless there is a court/coronial or similar order requiring it. This proposed change is not yet in place.

What happens to personal health information if a My Health Record is cancelled?
There were concerns that the current law allows cancelled My Health Records to be retained for 30 years. In response, the Australian Government has agreed to change the legislation to ensure that if an individual chooses to cancel their record, it will be permanently deleted. This proposed change is not yet in place.

SECURITY ISSUES

Will My Health Record be secure from hackers?
Your My Health Record is linked to your myGov account, which provides you with access to a range of Australian Government services, including Medicare, Centrelink and the Australian Taxation Office.

The Australian Government states that My Health Record is protected by high grade security protocols to detect and reduce external threats.

In July there were media reports of problems with apps authorised by the Australian Digital Health Agency to provide people with access to information on their My Health Record including test results, prescription and health summaries. Flaws in the system apparently allowed private health information to be funnelled to legal firms searching for personal injury cases. This led to an urgent review by the Health Minister.

Many experts have expressed concern that the existence of a massive online database of electronic health records will act as a ‘honeypot’ for hackers. My Health Records are part of a larger system and that opens health records to many more people increasing the ‘threat surface’ and making it more at risk from hackers. Concerns are not confined to keeping personal health information private, they also extend to the risk of identity theft. The My Health Record Privacy Policy states that in any online platform, including My Health Record system, there are inherent risks when transmitting and storing personal information.
Privacy advocates are also concerned the opt out system creates My Health Records which are “fully shared by default” believing it would be better to set the highest level of security as the default rather than the lowest. In addition, the need for Australians to urgently establish security settings in their My Health Records has not been a central feature of the government communications campaign.

YOU DECIDE

If you want a My Health Record
Go to the Government website and follow the instructions to register. Alternatively, if you do not opt out a My Health Record will automatically be created for you this year.

Security controls for your My Health Record
If you have or want a My Health Record, it is essential to review the information on setting security controls as they are all set to ‘open access’ by default. We strongly recommend you go to the Government website and follow the instructions to set controls for who has access to what information.

If you don’t want a My Health Record
Remember the deadline to opt out is 15 November 2018. You can ‘opt out’ by clicking here. You will need to provide identification (for example, driver’s licence and Medicare number). If you don’t have the right identification cards or if you need assistance the number to call is 1800 723 471 – this is a Government number.

If you can’t make up your mind
Some people may need more time to work out what is best for them. If this applies to you, we think the best thing to do is to opt out before 15 November as you won’t have another chance to do so before a record is created for you. If you opt out and decide later that you do want a My Health Record, you can register for one.

If you have a My Health Record and want to cancel it
Some people may have a My Health Record and later decide they don’t want it. Others may not find out they have a My Health Record until later. To cancel your record you should read the information on the Government website and follow the instructions or if you need assistance the number to call is 1800 723 471 – this is a Government number.