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Wednesday, 14 November 2018
Page: 8061


Senator DI NATALE (VictoriaLeader of the Australian Greens) (10:10): The My Health Records Amendment (Strengthening Privacy) Bill 2018 amends the My Health Records Act 2012 to strengthen the privacy provisions of the My Health Record system. Some of the key provisions of the bill that we are debating today include the addition of a requirement for the system operator to permanently destroy a My Health Record, should the healthcare recipient cancel their registration for a record, and for any information in that record to be deleted. In other words, if somebody asks for their record to be destroyed, a backup copy can't be kept and can't be accessed at a future point in time; it will be destroyed permanently.

The other issue involved in this legislation is ensuring that we limit disclosure of the information to designated law enforcement and government agencies and make sure they can only access this information through a court order. That is as it should be. We know, though, that the government defended the existing legislation, stating that it didn't believe that this information could be provided to law enforcement officers outside of the provision of a court order, and yet the Minister for Health was proven to be demonstrably wrong on that point of fact. That's why this bill is necessary.

The bill arose as a result of significant community pressure having been put on the government, because what we are now seeing is the administration of a major change in terms of people's sensitive, private health information. When these changes were first announced, Minister Hunt said that the legislation would be passed and resolved before the end of the opt-out period. That is as it should be. These are changes that should be passed before we end the opt-out period for the My Health Record. The opt-out period closes tomorrow, and this legislation won't be passed, as we heard from the previous contribution, until this bill goes to the lower house, which is weeks away. The most sensible course of action would have been to extend the opt-out period at least until this legislation was passed. Yet what we're seeing are a range of changes to a piece of critically important health information being introduced at the same time as people will have a record created for them.

People are going to have a My Health Record created as a result of the end of the opt-out period. It will happen by default. Many people in the community are not even aware that they will have this record created for them. Yet legislation to control the way in which their record is managed won't be passed for weeks—and we don't have the certainty of knowing that it will indeed pass. It makes perfect sense to wait until this legislation is passed before considering any opt-out period, and yet, the government, because they are only interested in protecting their reputation, not protecting the community, are pressing ahead with this legislation at this time, with the opt-out period closing tomorrow.

The bill that we're debating today was referred by Labor and the Greens to the Senate Community Affairs Legislation Committee because of the significant concerns that members of the community held. There were concerns not just from patients and healthcare recipients but also from a number of the peak health bodies—all of them expressing very serious concerns. Privacy organisations also expressed concerns during the commencement of the opt-out period. As a result of that inquiry, we learnt of a number of serious issues that were yet to be resolved with My Health Record.

Let me put on the record from the outset that we, the Greens, are absolutely supportive of the purpose of creating an electronic health record system. If executed properly, it is a significant benefit to both individual patients and the broader community, in terms of public health. If done properly, this is a reform that will be good for people and good for the Australian nation. I can tell you as a former GP, somebody who spent countless hours scribbling down medical notes, receiving notes from some of my professional medical colleagues, trying to decipher that health information—and there is a running joke about doctors' handwriting but in all of these stereotypes there's often some truth to it—it is often very difficult to get access to that information. That's if you can get it.

Oftentimes, people present to us after having seen another doctor, after having had pathology tests done through another medical service, after sometimes having presented to an emergency department or a major hospital. As a treating GP, you don't get access to any of that information. It's remarkable that here we are in the 21st century and, often, the only way to get information to a medical practice is via the use of telephone or fax. Some of these medical facilities are not even established to process information through email. So we rely on fax and telephone. That remains the case today.

If you think about it, often, people will come from having had a specialist appointment, because there is a complex medical issue that needs to be addressed, and as the treating practitioner you don't get access to that information. A blood test could have been done. An MRI could have been done. That person could have been referred to another medical service. There is no record of that information unless each of those individual services provide that information to the treating practitioner in a timely way. At the moment, it just doesn't happen. Our medical record system in Australia has more in common with 1970s health practice than it does with a modern 21st century health system. And it has huge consequences. It has enormous consequences.

One of the most common reasons for people getting into trouble, in terms of side effects from drugs, is not just because of the drug that has been prescribed but because of drug interactions. One of the things a medical practitioner needs to be aware of before we make a decision to prescribe a second drug is what drug has already been prescribed. Drug interactions are very serious. We know that they're a cause of significant iatrogenic illness, medically induced illness. Rather than helping somebody by writing a prescription, we might be doing something that can cause serious side effects. Sometimes—rarely, but it does happen—it can be fatal. Drug interactions are very serious, and they could be resolved if we knew, if we had up-to-date information, of people's medication history every time we wrote a prescription.

It's also important if somebody has been to a major hospital where they've had some sort of intervention. It may be surgical intervention or it may not. They may have been in a ward where their medication has been adjusted, where a new medication has been started. In many instances, we don't get the discharge summary from the hospital. What happens in that circumstance is that you have no idea what drug has been prescribed, what intervention has taken place or what tests have been done. Sometimes, when it comes to analysing pathology results, the only way we can determine there's an issue is by tracing those results over time. You track a particular level, for example, of someone's kidney function, over time, to see if their kidney function is deteriorating or stable. The only way you can do that is to look at a series of tests, over time. Still, today, tests are done at different facilities. The results are sent back to different practitioners and that information isn't located in a central place. A practitioner needs to get access to that information so they can diagnose a problem and provide treatment, in a timely way, because they realise that something is going on for their patient. They won't realise that if they don't have access to all of those pathology tests. So it's a critically important piece of health infrastructure.

There's also the situation where sometimes people present in acute pain—I've been in that situation before—and they might request analgesia. We know that opiates are very effective pain relievers in the short term. We know that providing somebody with an opiate medication, whether it be something like Panadeine Forte or oxycodone—OxyContin as it's known—is very effective. But we also know that there are significant risks with associated dependence. We also know that doctor shopping goes on; we know that some people who become dependent on these drugs will visit different surgeries in an attempt to get access to that medication. We now know that the most common cause of overdose death in Australia is not from heroin but actually from pharmaceutical opiates—medically prescribed opiates. More people are dying from prescriptions made in doctors' surgeries than they are from illicit heroin in the streets. My Health Record has huge potential for helping us to address that challenge.

So, again, it has enormous advantages. I'm just looking at Senator Seselja, who looks like he's challenging that information. If he has an interjection to make, I'm quite happy to take that interjection—

Senator Seselja: The voice is in his head!

Senator DI NATALE: But the issue is that there's great potential here. We know that this can provide significant benefits to those people who have chronic complex illnesses and who are seeing multiple medical practitioners.

But the problem at the heart of this bill is that we're undertaking a major change without due consideration given to many of the concerns that were raised right through the Senate inquiry relating to people being able to control their own information and relating to privacy and anonymity. Many of those concerns I raised back in 2012, when this legislation was being debated. Here we are, six years later, and many of the concerns I raised back then in 2012 have come to light. So here we are right now—at the last minute, with the opt-out period ending tomorrow—rushing legislation through the Senate.

This legislation does represent an improvement to the existing legislation. It's an important start, and that's why we will support the passage of the amendments to the My Health Record that are proposed in this legislation. But we also have other concerns that aren't addressed in the legislation. Let's get to what the bill covers initially.

As I said earlier, permanent deletion of records is critical. Currently, the system operator is required to retain a person's healthcare information for 30 years after the death of the healthcare recipient, or, if the date of death is unknown, for 130 years, even if the person has requested that their My Health Record be cancelled. If someone wants their record cancelled, it should be cancelled. A range of community groups expressed significant concerns about this provision but, again, it's an example of where the legislation was drafted clumsily. So we are going to support that amendment, something that we raised through that committee process to ensure that the system operator must permanently destroy a My Health Record. We will support that part of the legislation and will introduce a further amendment to ensure that this deletion is as complete as possible.

On access to the My Health Record by groups other than the person who intended to access it: of course, one of the other elements that the health minister outlined was that law enforcement agencies wouldn't get access to this information unless they had a warrant, but he was then shown to be wrong. That is a great concern, and so we absolutely want to see access by law enforcement officers only through a court order. We strongly support the introduction of subsection 63(5), which limits the laws that authorise the collection, use and disclosure of My Health Record information. It does mean that entities seeking to access it need a court order to do so. That's very important.

As I said, we do understand that the government will be introducing a number of amendments, and we also understand that Labor and Centre Alliance will also introduce amendments. I'm flagging now that we will support the government's amendments and we will support many of those other amendments put by Labor and the crossbench. We are also introducing an amendment to ensure the privacy of the information of young adults, 14- to 17-year-olds—adolescents who are becoming adults. In order to prevent the parents of 14- to 17-year-olds accessing their child's record without explicit consent, we want to make sure that, given this significant change, young people have control over their own health information. Often, a young person might be going to see a GP and they'll be seeking medication. It might be for a sexually transmitted disease; it might simply be for contraception. That is information that that young person should feel confident will remain within the realm of the treating doctor and the patient.

Currently, for 14- to 17-year-olds, we have something known as competent minors. If you're a young person and a doctor assesses that you're able to make this judgement for yourself, the doctor will respect your privacy and determine that you are able to make that judgement on your own. Under the current legislation, a parent of somebody aged 14 to 17 can access the child's record electronically. It couldn't happen under the current system. You'd have to ring the medical practice. The medical practice would then speak to the person involved. If the person involved said, 'No, I don't want Mum to see it,' the doctor wouldn't accede to that request. Under the current system, you can do that. We want to protect that private information. It's sensitive information. That says to a young person that you should, if you're getting into trouble with drug abuse, if you want to access contraception or if you have a tricky mental health issue—it may be, as I said, a sexually transmitted disease—feel confident to know that you can go and have that conversation with your GP and that that information will be private if you want it to be private. That's the case at the moment, and we should respect that. With this change, we should make sure that young people are afforded those protections.

I know the government have indicated that they understand this is a concern. They've also indicated that there may be problems with making that change. We acknowledge that, but, on benefit, we are planning to introduce an amendment, because we think that protection is absolutely critical. The government have indicated that they are looking at referring this to an inquiry. We will support an inquiry should our amendment fail—we hope it won't—but it is too critical to be left simply to a review, where we don't have a set reporting date and there's no confirmation about what action will take place subsequent to that review. We want the confidence to know that, if you're 14 to 17, your information will be kept private should you wish it to be private. The review can continue and, if there are any other additional changes then we can look at introducing those after that amendment is passed.

We absolutely agree that Labor's call, which is indeed a joint call, to extend the opt-out period is the right call. We think that extending it for a period of 12 months is the right call. Indeed, we put forward a motion to the parliament to do just that. This is a big, big change. People need time to come to grips with this change. They need to understand how this information is managed and then they need to make some decisions about how they want their own personal information to be managed. Some people will feel very comfortable with the minimum, default settings, and they will continue, happily, to trust doctors, the public health community and, indeed, government with that sensitive information. Others won't, and right now there are too many members of the Australian community who are not aware that this change is taking place, who don't have the information at hand.

We do think that Australians have got a right to make an informed choice about this, and they haven't been given that opportunity. Indeed, everything that's happened so far has undermined confidence in the system. The minister's own statements about issuing court orders demonstrate that he himself is not on top of this piece of legislation, so we think that an amendment to extend the opt-out period to force the government to address these concerns and to bring the Australian community with us is absolutely critical, and we will be supporting it.