How to use your new government owned online My Health Record

Australians who did not opt out will now have an online My Health Record created for them. This is how you need to use it and protect the information in it.

MORE than 22 million Australians yesterday got a government owned online My Health Record they were told could save their life but experts warn it’s vulnerable to hacking and could put your privacy at risk.

Here we try to walk you through some of the things you need to know about this record and how it affects you.

The first thing you need to know is that if you go looking for your My Health Record today you most likely won’t find it.

It could be a month before your My Health Record is created as the government waits to process opt out requests and generate the health care identifier information to set up the records.

The most important thing you need to know about your My Health Record is you have personal control over what appears in it and who can see it and once it is created you must act quickly to assert that control by setting up a PIN number.

This is crucial because the default setting of the record is open access, that means any registered health practitioner who treats you use can see it, this includes not just your doctor but your optometrist, your dentist, your podiatrist and physiotherapist among others.

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Professor Kerryn Phelps explains privacy risks of My Health Record. Picture Tim Hunter.

Former Australian Medical Association president now independent MP Professor Kerryn Phelps warns while there may be nothing sensitive in your record today in the future you may get diagnosed with a sexually transmitted illness or impotence and that would appear on your record.

To access your My Health Record you will need to set up a MyGov account. At present only 11 million Australians have such an account.

When you open your My Health Record through your My Gov account for the first time you will find it is just an empty shell.

The first screen will talk you through how to set PIN codes to restrict access to information on the record or to restrict which people can see it.

There are videos on the My Health Record website that show you how to do this.

You can also tick a box to prevent the government, in the future, sharing de-identified information from your record with researchers and third parties.

Experts warn it is very hard to de-identify health information.

Once you activate it the system will automatically download two years’ worth of Medicare and pharmaceutical data on to your My Health Record unless you tell it not to.

This information could reveal to anyone viewing it whether you have medical conditions like a mental illness, impotence, sexually transmitted disease or whether you had an abortion.

The record could contain sensitive health information you want kept private. Picture istock

If you want to, you can delete from the document reference to mental health drugs or an abortion procedure or other sensitive information but if doctors then rely on the incomplete record your health could be at risk.

You should check this information to make sure it is correct.

There have been numerous cases where the health records of other people have been mixed in with another persons, people have found their Pharmaceutical Benefits Scheme data says they are taking medications they don’t use for diseases they don’t have.

If this happens to you need to correct the mistake so doctors don’t rely on incorrect information when treating you.

You will need to contact Medicare and ask them to fix any errors.

Next, you can enter information into the record about your next of kin and contact details for an emergency.

You can upload an advance care directive that states how you would like to be treated in case of emergency.

The system also links to the organ donation registry and immunisation registry if you wish.

To be truly useful your My Health Record will need a shared health summary uploaded by your GP that summarises your key health conditions and allergies.

At present just 2.3 million My Health Records, fewer than one in 10, include such a summary, you will need to ask your doctor to upload one.

Eventually the My Health Record will include results from any blood or other pathology tests you have, your X-rays and other scans, hospital discharge summaries and hopefully specialist letters.

Check your My Health Record to make sure it does not contain errors. Picture Getty Images.

It will be the end of the year at least before private pathology providers and diagnostic imaging clinics upload their results to the record.

The potential of this record is great for people with complex and chronic illnesses because it could keep all their key health data, medical test results, X-rays and scans in one central place.

But the record is still in its infancy and under development.

Most doctors aren’t using the record and ambulance paramedics and medical specialists and some hospitals can’t even access it through their computer systems.

The ADHA hopes that now most Australians have a My Health Record more health professionals will start using it and that over time most health services will securely connect to the record.

Mark Kinsela, the general manager of the Australian Digital Health Agency which runs the record says patents should not expect it to be perfect, “we are on a journey here”, he says.

Around one in ten Australians decided to opt out of the My Health Record in recent months because of privacy concerns.

The government says the My Health Record system is protected by military grade security and when asked this week if he could “guarantee that people won’t have their My Health Records wrongfully exposed” Health Minister Greg Hunt said “yes”.

Already there have been over 88 data breaches involving the record.

And cybersecurity experts warn the biggest risk is that hackers could try to access the My Health Record system from a GP clinic, a hospital or even an optometrist.

Last year the health records of millions of Singapore citizens were hacked including the record of that country’s Prime Minister.

There is also a risk authorised users of the system like nurses or other health workers could access your record without your permission.

Doctors at a Manchester hospital were last year being investigated for allegedly accessing the record of former Manchester United manager Alex Ferguson for personal curiosity when they were not involved in his treatment.

There is an audit trail and you can check who accesses your record.

Australian Privacy Foundation health spokesman Bernard Roberston-Dunn says it is not to late for people to cancel their record.

Even if they missed the opt out deadline they can cancel the record at any time.

Originally published as How to use your new government owned online My Health Record