My Health Record – Should I opt out?

My Health Record is an online database, operated by the Australian Government, designed to keep all your medical records in one place. The following information – taken from a paper prepared by Hepatitis New South Wales – describes the benefits and risks of this new system. It will help you make an informed decision and give information on how to opt out if you decide you do not want a record in My Health Record.

Everyone will have one – unless you say no.

Every Australian will have a My Health Record account set up, unless they choose not to have one. If you choose not to have a record you can opt out between 16 July and 15 October 2018.

If you want a record in My Health Record, you don’t need to do anything. After October 2018, health services will upload the past two years of your Medicare and pharmacy records into the system.

Already, five million people have records in My Health Record. There is now a three-month period for people to opt out by closing their record or stop one being created.

A record in My Health Record will include:
– Medicare records for up to two years
– Prescriptions
– Test or scan results
– Medical conditions and treatment
– Immunisation records
– Specialist referral letters
– Hospital discharge summaries

You can set up control features

Once a record is created, you can access it online with a personal access code, where you can add, restrict access or ‘deactivate’ information and apply control features and monitor who has access to your record. However, in an emergency, or where your or another person’s safety is a concern, health workers can ask for any restricted access features to be lifted for five days.

You can also add personal health summaries, allergy information, care plan information, Indigenous status information and other personal information you choose to share.

What are the benefits?

Health staff can look at your records and information. When you go to a GP, clinic, hospital, pharmacist, dentist or use an ambulance, health care workers can see what’s been happening with your health. My Health Record may improve and support coordination of your care. It may reduce doubling up of tests, prevent drug-drug interactions from prescriptions, and save time in an emergency or where you are unable to communicate.
Health workers will add to your record after each visit, prescription, or test.

If you change doctors, with your consent, all your test results and medical information can be available to your new doctor without the hassle of transferring your files. It also prevents health information getting lost.

What are the risks?

According to the Government, the information in your My Health Record is securely held and cannot be accessed by anyone other than you (or people with your login details) and healthcare workers. Your information is not published online, it is not able to be searched for on the internet, and the Government has stated that your My Health Record data is unlikely to be stolen or hacked.

Unfortunately, people affected by viral hepatitis sometimes report that they experience changes in the attitudes of health care workers and/or the way they are treated, compared to other people, after the health care workers learnt of their hepatitis status. This stigma and discrimination can affect people’s health and safety.

Your health information may be shared with other people or agencies, including researchers, insurance companies, police, immigration or community services

To protect your privacy and safety, you may have been going to one service, such as your usual GP for some things, and going to another health service, such as a sexual health clinic for other matters. My Health Record will share your medical records among all the health services you visit, including GPs, dentists, pharmacists, clinics, and hospitals. If, for example, your record shows you have been tested or treated for hepatitis B or hepatitis C, this information may be seen in your record by all your health care workers.

You can control who sees your records

If you have a record, you can control who views information by going online and changing your privacy settings or ‘deactivating’ data. However, if you ‘deactivate’ data, the information is not deleted, and a copy will be kept in the system. You can choose what is added to your record by clearly telling a healthcare service provider that you do not want your health information uploaded each time you visit them.

You can change your mind

The Government says Australians can cancel their record at any time after the end of the opt out period – or create one, if they opted out initially. However, other government departments or other people may be able to legally access your records.

My Health Record and the Law

The laws about who can see a person’s health record are very broad. In the future, your health information may be shared with other people or agencies, including researchers, insurance companies, police, immigration or community services.

Currently health information kept in medical files can only be given to these third parties after they get court approval. Once the new system starts, health records may be viewed by third parties if authorities “reasonably believe” the information may prevent or solve a crime, prevent “improper conduct”, protect public spending, or be relevant to a case before a court or tribunal. The laws about this are in the My Health Record Act 2012 (Commonwealth)

Some people may find that their record places them at risk of stigmatisation and discrimination, or may create safety issues for them.

You may wish to consider carefully whether you want your health record held online or shared if you:
– have a criminal record or are affected by the criminal justice system
– use or have used drugs
– live with a lifelong transmissible condition such as HIV or hepatitis B,
– have or had hepatitis C
– are not on treatment after it was recommended
– are sexually active and test regularly for STIs
– are or have been a sex worker
– are transgender or intersex
– are bisexual, lesbian or gay
– have lived with mental health issues
– have been pregnant or terminated a pregnancy
– are a health care worker

Don’t want one. What should I do?

You can choose to opt out – but only have from 16 July to 15 October 2018 to do so. If you have any doubt, opt out. You can create a record later if you change your mind.

You can opt out online or by filling out a paper form. Register to opt out here: https://www.myhealthrecord.gov.au/for-you-your-family/howtos/opt-out

I want one. Do I have to do anything?

If you choose to have a record in My Health Record, you don’t need to do anything. Your records will automatically be uploaded. To view your information in My Health Record, you will need to create a myGov account at https://my.gov.au/ and register with My Health Record.

Further information

Read more at the My Health Record website at https://www.myhealthrecord.gov.au/

Our thanks to Hepatitis New South Wales for preparing the paper on which this post is based.

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