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Wednesday, 14 November 2018
Page: 8074


Senator WATT (Queensland) (11:08): I rise to join my Labor colleagues in expressing a number of concerns about the My Health Records Amendment (Strengthening Privacy) Bill 2018 and about the government's rollout of the My Health Record in general. What an absolute train wreck. From a government that we've seen botch technology rollout after technology rollout after technology rollout, here we are again with yet another one, in the form of the My Health Record. You really have to ask yourself: is this Australia's worst ever government when it comes to rolling out the basic technology that Australians deserve and expect in the modern era?

This is the government that has presided over an absolute shemozzle of a rollout of the NBN, something that was supposed to connect all Australians to the world—to give all Australians, no matter where they lived, the opportunity to plug into the best technology available in the world and connect to people right around Australia and right around the world. But this government has completely botched the rollout of the NBN, to the point where not a day goes by where my office—and I'm sure the offices of every other senator here—doesn't get contacted by people, in my case in Central Queensland and around the Gold Coast, whose businesses are suffering and whose kids' ability to do their homework and assignments is suffering from this government's inability to properly roll out the NBN.

So we've got the NBN fail. We've also got the census fail from this government. It's a long time ago now, but who can forget the absolute debacle that this government's rollout of an electronic census system was? At one point there was speculation that governments from overseas were hacking the system, but in reality it turned out to be yet another technology fail from this government. We then had robo-debt—an absolutely tragic, poor rollout of technology by this government, which I was involved in, in the form of a Senate inquiry, where Australians right around the country were being falsely accused by their government of owing thousands of dollars in debts to Centrelink that they actually didn't owe. That was all because this government put in place a technological system that wasn't built properly, and the result was that people were being falsely accused of owing thousands of dollars and having debt collectors sent around to their doors to pursue debts that never actually existed.

Still in the health field, we've had the ongoing disaster that is the National Cancer Screening Register. That was one of the first issues that I dealt with as a new senator a bit over a couple of years ago. I think it was the first Senate inquiry that I participated in—the legislation to put in place the National Cancer Screening Register. We were told repeatedly by officials from the Department of Health that, if we didn't pass that legislation urgently and get the Cancer Screening Register up and running, then, putting it bluntly, people would die, because cancer screening wouldn't be done in the way that it should be. Well, more than two years on—even after we did our job and passed the legislation quickly, despite reservations—the Cancer Screening Register is still not up and running. From what we were told by the department back at the time, people's lives in Australia are being put in danger because of this government's failure to properly roll out technology. Now we have the latest one—the My Health Record. It has been a rolling disaster from this government, from its poor information campaign when it was first being rolled out to today, when we are seeing media reports say that the system is in meltdown because it cannot cope with the number of people who are dialling in or using the internet to try to opt out of a system that they have no confidence in.

I want to make very clear that Labor has always supported and continues to support e-health and moving health care to online mechanisms. But it is no surprise that the My Health Record system is in meltdown today, because Australians don't have confidence in this government's ability to roll out new technology in a way that safeguards their privacy and in a way that works properly. And it's no wonder that Australians have no confidence in this new My Health Record, because of that litany of failure that we've seen from this government across the NBN, across the census, across robo-debt, across the Cancer Screening Register—and I haven't even talked about the data breaches that we keep reading about from government technology systems as well. Time after time after time, this government has dropped the ball when it comes to technology rollout, usually resulting in massive cost increases for taxpayers to bear as well. It's no surprise then that people have completely lost confidence in what should be a really fundamental part of our health system in this day and age.

For as long as I've been involved in health policy, going back to my days in the Queensland government more than 10 years ago, the establishment of a good e-health record has been pretty much the Holy Grail when it comes to delivering good quality, modern health care. Any health professional you talk to will tell you—and they have told us for many, many years—that having an e-health record that captures all information about a patient, their health needs and their health experiences is essential to providing the best-quality health care that Australians need and making sure that people are prescribed the right drugs, that we get away from this system where records and notes are held by a hospital in one place. These records might refer to the fact that someone has an allergy to a particular medication, but that's not very good if you go to another hospital, if you're on holidays, and that hospital doesn't know that you're allergic to a particular medicine.

That's a really basic example of how having an e-health record would make a massive difference to the health care of Australians: making sure that they get the right medication and making sure that they don't get medications that they are allergic to, let alone the cost to the system that is incurred when people are provided with the wrong medicines or when other features of a particular patient aren't known by a treating practitioner. These are the kinds of benefits that can come from establishing an e-health record. That's why Labor have been so supportive of this, going back to when we were in government and first introduced the earlier version of the personally controlled electronic health record. But the way this government has now gone to try to change the way the health record operates and the way it has rolled it out—backed up with its terrible record in rolling out technology—is why we are here today, still talking about failures in this My Health Record system.

Probably the most fundamental problem with this My Health Record that is being proposed by the government—and I say this as someone who has participated in the Senate Community Affairs Committee inquiry into the record—relates to the fact that the system that was originally put in place by Labor when we were last in government, the My Health Record that we created, was an opt-in system. People made an active choice as to whether they wanted to get a My Health Record, which would then consolidate all their health notes and the records of their treatments into one place for health practitioners to use. But obviously in an opt-in system those people who don't want to do that, for whatever reason, aren't forced to have a health record. The problem we have now is that the system the government is putting forward seeks to change from an opt-in system to an opt-out system. Unless people make an active choice that they don't want a health record, they will automatically get one.

I don't necessarily have a problem with moving to an opt-out system, provided that people are made fully aware of their rights, the pros and cons, and a range of other things. I do have a problem with moving, as this government proposes to do, to an opt-out system built on the foundations that underpin an opt-in system. That might sound like jargon, but to really simplify it: the point of having an opt-in system is that a patient—or any Australian citizen who opts in—is making an informed decision about putting their data online and making it available to a range of people, whether it be their health practitioners or other people. They've actually decided that they want to make that information available.

We've discovered through the processes of the inquiry that under an opt-in system, the way the government was first proposing it, not only was that information being provided and made available to health practitioners but also there were a range of other people who would have access to that data—in some situations employers or employer nominated doctors and in some situations people's former partners, even if it was a woman who was escaping domestic violence. In the old system, where someone opted in, they had control over who would have access to their information, because they were making an informed decision to make that information available to health practitioners and all the other people who would have access to that system. If they didn't like it—if they didn't want to make that information available—they didn't have to opt in.

What we've now got under this government is an opt-out system where, unless you take an active step to opt out of the system, your health information will be made available to the same range of people—health practitioners, employer nominated doctors—with the risk of that information being passed on to employers or former partners, even those in a domestic violence situation. So you simply cannot build an opt-out system, as the government proposes to do, on the same foundations that underpin an opt-in system. With what the government is proposing, someone does not exercise informed consent in having a My Health Record created for them. It's happening for them whether they like it or not, whether they know about it or not.

As a result of the work we undertook in the Senate inquiry, Labor and the Greens put forward a range of amendments that we wanted to see put in place by the government, to tighten some of these risks around privacy and access to information. As other Labor senators have mentioned, when we set up this Senate inquiry Minister Hunt accused us of engaging in a stunt. Well, it was so much of a stunt that he has now accepted almost all of the recommendations of that inquiry. So, clearly, we were on the right track in saying that there were real problems with this My Health Record, an opt-out system that needed to be fixed via this legislation.

We all remember that when the opt-out period began, in July, there was an absolute firestorm of controversy as the media, stakeholders and the general public raised concerns that the government's system was not up to scratch. We were told by the government that everything was fine, that there was 'nothing to see here' and that it would all be okay. But that wasn't the response Australians were providing. They were clearly worried about what was being done here, with the lack of information being provided. At the time, we did get the government to make some amendments, which initially they had said weren't needed. They were things like tightening access for law enforcement agencies so that law enforcement agencies could only get access to My Health Record data using a warrant. The government also agreed to amend the system to enable the permanent deletion of records, something they had initially resisted as well. I'll give the government credit for acknowledging the need for those changes and making those amendments.

But, as the Senate inquiry revealed, there were a range of other problems with the system despite the government's insistence that everything was fine. It's lucky we did get that inquiry up, because it did expose, by having witnesses come into the inquiry and give evidence, a range of other deficiencies with the government's approach that needed to be fixed. That's what led us as Labor senators to propose six further amendments to introduce tougher penalties for breaches of the act—data breaches—to address concerns around access to My Health Record data from former partners, even when a relationship has broken down following domestic violence. That amendment has now been picked up by the government.

The Senate inquiry also revealed some very worrying evidence about the ability of employer nominated doctors to get access to health data. If someone is injured at work and sent off to have a medical assessment performed by an employer nominated doctor or a WorkCover nominated doctor, it was revealed through the inquiry, there were inadequate safeguards to prevent that information filtering back to an employer who might then decide to use it as a reason to either get rid of an employee altogether or discriminate against them in some way. As a result of that evidence, we made a recommendation that the legislation be amended to prevent that kind of employer access, and I'm pleased the government has picked that up.

One of the other really big concerns that emerged in the inquiry was the risk that at some future point the record could be privatised. We know this government has a tendency to privatise social services. We're seeing it happen right now in Medicare, in Centrelink offices, with the increased outsourcing of work to the private sector. So it's quite understandable that many Australians would have a concern that this government, if it were returned, might look to privatise, or in some way make money out of, a very valuable resource: a record of all Australians' health information. You could imagine there'd be a lot of drug companies, a lot of private health insurers and a lot of other people out there who'd be very keen to get access to that data and make money out of it, and there was nothing in this legislation, as it was originally proposed by the government, that would have stopped the government from deciding to privatise it or commercialise it in the future. So, again, I'm pleased that the government have listened and have picked up our recommendation that the legislation be amended to prevent that from occurring.

As I said, it's good that they've finally listened about the need for those amendments, despite their original claims that everything was going to be fine and the legislation was perfect as it currently stood. But we still maintain that the Australian public's concern about My Health Record is so deep that the government really must further extend the opt-out period, and that's why we're going to be moving an amendment to the government's bill to insert a 12-month delay in the expiration of that opt-out period. The fact that, according to newspaper reports, systems are melting down today as floods of Australians attempt to opt out of this system shows that there are still very great concerns among a large portion of the Australian community.

I'm confident that most Australians would be convinced that this is a good thing to do if there were a proper information campaign run by a government that doesn't have a record of technological failure—things like the NBN, the census fail, the robo-debts and every other failure from this government in technology—and that is able to roll out technology effectively and properly communicate to people the pros and cons of having a My Health Record, in particular the benefits to patients of having all of that data consolidated and available to any health practitioner no matter where they're being treated. But I'm not confident that that can occur with the opt-out period about to close tomorrow, when we've had such a pathetic information campaign and such a pathetic rollout by this government. Clearly, if this system is to work properly and is to give patients and taxpayers the benefits that an e-health record can provide, people need more time to think through the arguments, to understand the benefits, to understand the risks and to understand what's being done to minimise those risks through some of the amendments that the government has picked up. Twelve months more time would allow people to make the kind of informed decision that they need to make to have a health record provided for them.

I notice that it's not only Labor and other senators who are calling for a 12-month extension. I see that the Australian Healthcare and Hospitals Association, one of Australia's peak health groups, is supporting our call for an extension to the opt-out period. A 12-month extension would give the government time to commission and implement a Privacy Commissioner review to address outstanding concerns about the settings that underpin My Health Record. As I said, Labor has always supported a move to an e-health record. We were the ones who brought it in when we were last in government, but that was a very different system to what is provided for by this government. Australians need more time to get access to information about this record so we can harness its benefits in the future.