Are you in or out? Deadline draws closer for your My Health Record creation

The Australian Government’s new $2 billion AU health record information system, My Health Record is set to improve how medical practitioners to access, share and create information about your medical history. The initiative aims to improve the flow of accurate and timely information to GPs and other specialists in order to improve health outcomes for all Australians.

Here’s Dr Caroline Yates providing is a great summary of why medical practitioners will be able to improve their quality of care if their patients are using My Health Record.

My Health Record is a fantastic initiative and could change the meaning of continuity of Care in Australia, at least in theory.
But I, like many people, have some significant concerns over privacy, security and data access. And, as a data scientist, I’m concerned about data use, accuracy, integrity and completeness.

If you haven’t decided whether to opt out, you only have a few days from today. So let’s unpack the ins and outs of My Health Record before you make your mind up.

What are the benefits of having a My Health Record?

The official My Health Record website states that the benefits of creating a record are as follows.

Better Connected Care

Do you see one doctor all the time?

I don’t.

When I’m sick, with say a chest infection I can’t shake, I don’t care who I see at my local practice as long as it is ASAP. I know that doctors who work within that practice can access my previous doctor’s notes as long as my regular doctor entered them on the practice system.

My Health Record is said to be helpful to patients as it reduces their life admin including transferring medical records when they move. I’ve moved six times in 6 years and had to transfer practices a few times. It’s a simple process. I call my old GP and ask for my medical records to be released to my new GP, that’s it! My medical record follows me. But some people don’t do this, and that’s where the My Health Record would benefit them, as doctors at all practices will be able to see their medical history.

Where it may be of benefit is if I’m travelling interstate and I can’t see my regular GP. I mean, who transfers their records for a random one-off visit?

But the scenario where this would have the most impact is in the event of a life-threatening emergency. If you are unconscious, you can’t tell the doctors trying to help you what you think is wrong. Another instance My Health Record would have a critical impact in this scenario is to prevent catastrophic drug reactions.

I went into anaphylactic shock and then my blood pressure bottomed out because they didn’t know I was on beta blockers. If they had known they would have given me other drugs as well to stop that.

– Patient who had an adverse reaction when given treatment

This is where My Health Record is helpful for adults in general. But there are specific groups of people where My Health Record will be even more beneficial.

Parents

minutes is difficult for parents, I can’t even do it for my health history in that time, let alone for a sick child. My Health Record is aimed at providing a holistic picture of a child’s health for this reason. Many a diagnosis has been delayed or missed due to incomplete childhood records, and My Health Record could prevent this. The autonomy of the child has also been taken into consideration. I’m quite impressed by this and children will be able to take control of their record after the age of 14.

Older Australians

The older you get, the denser your medical record becomes. As we age, our bodies are more susceptible to acute infections and chronic disease. For older Australians, My Health Record affords connected care while easing the burden of remembering all of these details. In cases where the individual is suffering cognitive decline, most likely in older age, this system will be beneficial to them and their health care practitioners.

New Australians

Non-English or non-fluent individuals may use My Health Record to overcome the issues stemming from the language barrier that could significantly impair their quality of care. This is all well and good, but I question the integrity of the data in instances where there may be information that is lost in translation but still entered. Additionally, I want to know how this information is made accessible to these patients online. Is it translated into their language?

People with Chronic disease

Up to 21% of drug-related hospital admissions are due to drug interactions in Australia. That’s pretty high. I have a family member with a fairly serious set of chronic diseases. They are meticulous with the information they give to their doctors and keep great track of the large volume of medications they have to take. But for them, their history and medications being accessible to all specialists would have saved them the pain of having to deal with the fallout from drug interactions as they have had various specialists prescribed counter-indicated drugs at the same time.

Can I control my own My Health Record?

Yep, you control your record. This means that you can choose what to delete and who can see your information. If you don’t want a doctor seeing this, you can change your access settings, but that still makes for an awkward conversion in an appointment. You can check who has accessed your record and even get automated notifications via email or SMS. Be aware that in an emergency your access controls may be overridden to you know, save your life. This is the interface you would see if you were tailoring your My Health Record to your preferred level of access control.

Setting up a My Health Record through MyGov

Is it secure?

Depends on who you ask. The system is said to have:

A multi-layered and strong safeguards in place to protect your information including encryption, firewalls, secure login, authentication mechanisms and audit logging.

– My Health Record website

I’m beyond sceptical of this statement.

In 2018 there were 35 breaches of the My Health Record system, which rose to 42 violations in 2018. The Australian Digital Health Agency (ADHA) said that none of these was malicious….ah?

The ADHA insists that these breachers were the result of situations such as the wrong parent having access to a child’s record when they do not have custody of the child and fraud against the Medicare system through individuals accessing records which are not theirs. I’m pretty sure these could be seen as malicious. Most concerningly the majority of breachers were where the Department of Human Services used the same record as Medicare which is a data integrity issue. In summary, there are system integrity and access control problems to overcome.

ADHA may say that My Health Record is secure, but this doesn’t mean all integrated systems are. The healthcare sector in Australia has a pretty shocking history of poor record management. For example, Family Planning NSW, a service that offers reproductive and sexual health services was hacked in April 2018. Up to 8,000 records were held captive under ransomware, and the agency only became aware of this after clients contacted them and journalist Lauren Ingram notified people via twitter.

Would you want your last STD check made publically available?

Lauren Ingram’s Twitter post

Given the sensitivity of this data, I’m not sure I would be forgiving of such a scenario.

Who can access my health Record?

People who can access your record include

  • GPs
  • pharmacies
  • pathology laboratories
  • hospitals
  • specialists
  • allied professionals
  • secondary providers

That’s not vague at all.

At this point, your brain should be blaring, Danger, Danger! Abort, abort!

Not all employees are as ethical as they should be. Even though there are safeguards which flag when a hospital employee accesses a family record or a specific record too frequently, people can easily override this, and they do. One way this happens is because departments don’t adopt their EMR software or lack training in how to use it, making circumnavigating the system much more attractive.

I have seen thousands of records be transferred into excel spreadsheets and become accessible by all in a department. This meant that to get to one record, the practitioners would scroll through the thousands of others and be able to read that sensitive information with no safeguards in place. The one password to the file, located on a shared drive wasn’t changed in 2 years. In small country towns, this becomes problematic as you learn information about your neighbours or even colleagues, that they would have never divulged to you. Friday night at the pub just became 100% more interesting (or awkward depending on how you see it).

Insurance agencies and employers are legally not allowed to access information on your My Health Record. One reason that the last deadline was extended was to allow for this legislation to pass through the Australian Parliament under the My Health Records Amendment (Strengthening Privacy) Bill 2018. Unauthorised civic access may result in a fine of $315,000, criminal conviction and up to 5 years jail time. Big woop, people do it all the time. Again, a systems issue.

This legislation also prevents privatisation of the My Health Record system. In saying that there seem to be some fair dodgy dealings going on that indicate some commercial conflicts of interest.

Law enforcement and government agencies access are a little less clear with the official My Health Record website stating

To date, the Agency’s official operating policy has been that no information within My Health Record can be released without an order from a judicial officer. The Agency has never received such a request and has never released information. Under new laws, no information can be released to  law enforcement or a government agency without your consent or an order from a judicial officer

– My Health Record

So I guess law enforcement can access your record.

The My Health Record website states that researchers are currently unable to access this data, but policies and frameworks are being drawn up to oversee this. It is likely that data will be used for public research after de-identification as early as 2020. However, media reports state that secondary use for research “and other purposes” is going ahead as well.

My Health Record information can be used for research and public health purposes in either a de-identified form, or in an identified form if the use is expressly consented to by the consumer

Department of Health spokesperson

The most concerning aspect of this is the “other purposes” part. This is actually a code for organisations such as pharmaceutical agencies. You need to make your mind up about how you feel about that. And no, this is not a conspiracy theory. Think about the 2017 Melbourne Datathon where 3 million rows of Pharmaceutical sales via banner pharmacies was given to participants. There is nothing wrong with this but in reality, you could do a lot of damage with this if you really wanted to.

Why did they delay the deadline?

The opt-out period, where you can choose not to have a record generated, was initially set to end in November 2018 but Federal Health minister Greg Hunt postponed this deadline until the 31st of January 2019 among concerns about Data Privacy and Security. Minister Hunt sought to reassure the public that all was well with the system and that even if they missed the deadline, they could still opt-out at any point. What Minister Hunt neglects to mention here is that a record would be created for you after the 31st of January, although you can permanently delete this at any time.

The decision came after legislation strengthening privacy protections for the electronic health record system was amended in the Senate to include the extension.

SBS News

There have also been rumblings that a ‘small’ technical glitch from 2016 that has not yet been fixed. This bug could leave patients information inaccessible or out of date. If it’s still around, and I’m not saying it is, then it needs fixing.

Then there’s that ‘small’ matter of two total system crashes in November 2018. The media attention prompted people to try and opt out on the deadline in November 2018, and the unprecedented surge in website traffic crashed the system. Given the Federal Government’s failure to load test this and other previous initiatives, shout out to #CensusFail, it is likely we’ll see this issue again on the 31st of January. I don’t think #MyRecordFail has the same ring to it through.

Get in early to avoid this

Is my information accurate?

This is probably my biggest issue with the My Health Record system. It’s not the system itself but the users. The sad reality is that some doctors are just bad at their job. Because of this, the accuracy of the information could be quite low. If another doctor is using it, then there could be severe implications for a patients health. Fortunately, the Australian Medical Association is treating My Health Record with a healthy dose “professional scepticism” stating that doctors would likely be handling the records the same way as hospital discharge notes, by planning for a 10% margin of error. Because that’s not concerning at all.

How do I opt out?

If you want to opt out, you need to visit the My Health Record page. It’s actually a pretty easy process. You’ll need your Medicare card and drivers licence (or passport). Here is a helpful video to guide you through.

Trials of nationally accessible EMRs began in 2015 when the system was called the Personally Controlled Electronic Health Record (PCEHR), and the eHealth record. Unfortunately, Australians didn’t respond well to this and location-specific trials recommenced in October 2016 with the system being renamed My Health Record. A little under 1 million Aussies registered in the opt-out participation trials. So if you lived in the Nepean region of the NSW Blue Mountains or Northern Queensland be aware that you may already have a My Health Record.

Hopefully, you have a little more understanding of some of the ins and outs of the My Health Record. I have opted out, but that may not be the best choice for you. Seek out further reading and make your mind up for yourself. You have two days.

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As always LDS cannot absolutely guarantee the correctness of this information and you should seek out further details through the many links in this article to the official My Health Record website.