By the end of 2018, the federal government will have set up an electronic health record for all your health data – including sensitive issues like mental health treatments and other conditions you may wish to remain private – unless you opt out by 15 October 2018.
Doctors will be able to access your record to assist in their treatment of you, which could be essential in emergency situations. But security experts warn privacy breaches are only a matter of time.
There's been a lot of public discussion since the three month opt-out period started last week. So we've looked into the pros and cons to help you decide if you want in or out.
What is My Health Record?
My Health Record is a digital collection of reports relating to your health, such as prescriptions, doctors records, imaging and other test results. What it means is that instead of having files with every doctor you've seen, test results at a pathology lab, prescription records at various pharmacies and so on, all this information will be in one central online
location accessible by authorised health professionals.
Relaunch of existing program
Technically what we're seeing now is the My Health Record Expansion Program. The original Personally Controlled Electronic Health Record (PCEHR) program was launched in 2012 as an opt-in system, with low uptake by the public.
The current push is to expand the system by making it opt-out so that by default, everyone has a record made for them unless they specifically request not to have one.
How My Health Record works
The data that will be added isn't new, but it's currently stored by Medicare, your doctor, hospital or other health professionals, sometimes in a paper-based system. What's new is that electronic records will be stored in one central place.
Information can be added to your health record by various health professionals and businesses, government agencies and yourself. It can be accessed by authorised health professionals, such as doctors, pharmacists, hospital staff and allied health professionals (for example nurses or physiotherapists).
The sorts of things that might go in there include doctor's reports, such as hospital discharge summaries, and results from tests and scans. It also includes all your Medicare claims and you can add your allergies and even an advanced care plan.
You can access and manage your record. You can set a PIN and restrict access to some or all documents stored on the record. You can even connect any health apps you're using to your record.
In an emergency, health care professionals will be able to override the safeguards to make sure they get all the information needed to provide you with appropriate care.
You may already have a record
Some people may already have a record, having set one up – perhaps without even realising – under the original system (the PCEHR). Almost 6 million people currently have a record. Check if you're one of them.
If you miss the deadline to opt-out or you already have a record, you can cancel it. However, any existing data won't be deleted, but stored for 130 years after your birth or 30 years after your death. While the data is stored, no one will be able to see or access it except through the digital health agency.
Your doctor and other healthcare providers may keep copies of any records they have uploaded to your record and store them in their own record-keeping systems.
Benefits and concerns
The main benefit of My Health Record is that all of your and your children's healthcare professionals will know the medication you're taking and the conditions you're treated for.
People who are most likely to benefit are those who:
- have complex health conditions
- take multiple prescription medicines
- get treatment from various doctors and other health professionals
- live in remote and rural areas
- are elderly
- don't speak English very well
- have difficulty remembering and/or communicating all the details of their medical story.
My Health Record should lead to better and well-coordinated treatment, while preventing unnecessary tests, harmful side effects caused by medication mix-ups, or even avoidable hospital admissions.
There are safeguards in place, so you can manage your My Health Record by installing a PIN and limiting the access to some or all documents to make sure that your emergency contact, carer and healthcare professional only have access to appropriate information.
But security experts warn that centrally stored information always brings the risk that in the event of a data breach there could be serious implications for you. And it would not be the first time healthcare data has been accessed by hackers.
And privacy concerns have been raised about the possibility that your health details could be released to the police and other agencies in certain circumstances.
If you can't decide whether you want to stay in or opt out, you can always opt out now, then rejoin at a later stage.
How to opt out or manage your record
You can use the step-by-step guides on the My Health Record website, and if you run into trouble call the helpline on 1800 723 471.
Further details are below for different situations.
You can't opt out, but you can cancel your record.
- Go to your My Health Record by logging on to your MyGov account.
- Select the 'Profile & Settings' tab.
- Select 'Profile' and navigate to the bottom of the page.
- Read the information and click on 'Cancel My Health Record'.
If you wish to have a record again at some point in the future, you can re-register at any time. Reports that were there before you cancelled will be accessible again, but you can ask for these records to be removed (they'll be archived rather than deleted, but they'll be inaccessible).
Opting out anytime from now until 15 October means a record will not be made for you. You can do the same for your children. You can register for a record at any time in the future.
Follow the detailed instructions on the My Health Record website. You'll need two ID documents:
- your Medicare or Department of Veterans' Affairs card
- your driver licence, or your passport, or your ImmiCard.
After 15 October you'll have to cancel the record that's been made for you.
Go to your My Health Record by logging on to your MyGov account.
- Go to your Profile & Settings tab
- Choose an emergency contact.
- Set up notifications, for example, to receive an email or SMS when someone accesses your record for the first time.
- Choose what type of your Medicare info you want to be included. You could, for example, choose that your Medicare claims won't be shared but that all your past and future medications get recorded.
- Decide if you'll allow your data to be used for research purposes.
Click on your Privacy and Access tab:
- Scroll down to 'Access by Healthcare Providers'.
- Click on 'Healthcare Providers involved in your care can access your record'.
- Scroll down to 'Healthcare Provider Access List' and choose the type of access you want to give to each provider in that list.
- Scroll down to 'All Other Healthcare Providers', click on 'Manage access' and insert a four to eight digit code. Unless you provide a healthcare provider with your code, they cannot view your My Health record. However, in an emergency when there's a serious threat to your health and safety, healthcare providers can override your PIN and access your record.
For more 'How to' guides and factsheets, go to the My Health Record website.
What the experts say
Medical experts such as the Australian Medical Association, the National Rural Health Alliance and the Consumers Health Forum have welcomed the new system and asked consumers to use the opt-out period to inform themselves about the benefits or otherwise of taking part.
Security experts, while acknowledging the potential benefits of having a centralised record system, warn that the safeguards could be breached which could expose sensitive information.
Australian Medical Association
"The current system of medical records means that we may have incomplete information on a patient – especially if the patient has recently seen another specialist or has been discharged from a hospital. The My Health Record will result in doctors having access to better information, in a more timely fashion, via secure means. Less time chasing up paperwork means more time can be spent treating our patients," says Australian Medical Association president Dr Michael Gannon.
Consumers Health Forum
"My Health Record is a key step in the shift from health consumers as passive patients, to consumers as active partners in their own care," says Consumers Health Forum CEO Leanne Wells.
"For too long, healthcare has lagged behind in exploiting the clear benefits of information technology to provide prompt, secure, and precise patient information. For these benefits to be realised and a consumer-centred and digitally enabled healthcare system to become a reality, consumers will need to be involved in using and improving innovations such as My Health Record," Wells says.
National Rural Health Alliance
"Australians living in rural and remote areas are more likely to end up in an emergency department from a heart attack, car accident or diabetic coma," says National Rural Health Alliance CEO Mark Diamond.
"If they're unconscious, and the medical team doesn't have access to their health history, the team may not be able to provide life saving care," Diamond says.
"A My Health Record means that all your important health information is at the fingertips of your doctor, nurse or surgeon," he says. "Simply put, My Health Record can save lives."
Professor Vijay Varadharajan – Global Innovation Chair in Cyber Security, University of Newcastle
"Having access to patient records can be highly useful, especially when it comes to requiring them in the case of emergency or even with old age patients. However data security and patient privacy are critical when it comes to healthcare information.
"From a technical point of view, there are access controls in place. However, the data itself, at this stage, is in plain format, it is not encrypted. Hence there is a potential for leakage if a breach occurs. With the growth in malware and security attacks, we cannot rule this possibility out."
Professor Katina Michael – School of Computing and Information Technology, University of Wollongong
"The type of confidential information stored on an electronic health record is unlike having merely your identity credentials stolen – it is like having your whole personhood exposed in terms of your condition, medication, past acts and more. There are massive implications for those working in pressured workplaces who may have their health record used against them – e.g. pilots, doctors, surgeons, healthcare workers.
"We need to make people aware of the pros and cons of opting-out, but we also need better, more honest reporting by government about some of the potential risks, in essence, to better inform the public. What we have now is a major honeypot of health data, waiting to be hacked for the taking and be available on the dark web."
Dr Cassandra Cross – Faculty of Law, The Queensland University of Technology
"The current My Health Record places a strong onus on individual consumers themselves to regulate the privacy and security settings of their record. In requiring an 'opt-in' model on the privacy settings of the record, this means that many people are unlikely to modify these settings. This may be through a lack of knowledge that the settings exist, uncertainty on how to do this, or an inability to successfully navigate the system.
"There are also genuine concerns over the likelihood of data being compromised in some way. While it is argued that there are strong security measures in place, it is naïve to assert that these are 100% foolproof (as demonstrated through data breach incidents with many previous organisations). Health data is an increasingly common and attractive source of data for criminals, and their ability to use personal information to gain reward is a reality."