Richard Di Natale (Victoria, Australian Greens) Share this | Hansard source

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—are 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—