Senate debates

Wednesday, 14 November 2018


My Health Records Amendment (Strengthening Privacy) Bill 2018; Second Reading

9:55 am

Photo of Helen PolleyHelen Polley (Tasmania, Australian Labor Party, Shadow Assistant Minister to the Leader (Tasmania)) Share this | | Hansard source

When the My Health Record controversy erupted four months ago, the government's first instinct was to bury its head in the sand and pretend there was no problem. It dismissed not just Labor's concerns but the concerns of senior respected medicos of the major medical groups, of domestic violence groups, of privacy, security and legal experts and of the union movement. It also dismissed the concerns of ordinary Australians worried about the security of their most sensitive personal information. Everything was fine, the government insisted: 'Nothing to see here. It's all a media beat-up'. After a couple of weeks of intense political and public pressure, Minister Hunt was dragged kicking and screaming into proposing two amendments to the scheme. Those amendments, requiring law enforcement agencies to get a warrant to access records and enabling the permanent deletion of records, were welcome ones, but they were also woefully inadequate as a response, addressing only a fraction of the privacy and security concerns that have been raised by concerned stakeholders. So Labor called for a comprehensive Senate inquiry to examine the system as a whole, to identify problems and to come up with solutions. The minister's response? He dismissed it as a stunt.

But it's lucky we did initiate that inquiry, because it exposed a whole range of further problems with this scheme that must now be fixed, and that's why one month ago Labor proposed six substantive amendments to the government's woefully inadequate original bill. Labor's blueprint included tougher penalties for breaches of the act, changes to address concerns around domestic violence and employer access, and better safeguards to prevent the privatisation and commercialisation of the system, including through banning private health insurer access. The government at first refused to engage with us on these changes. Then, with just a week to go until the end of the opt-out period, the government suddenly realised we were right all along, and they've now scrambled to implement all of our fixes. That's something we, of course, welcome, but I will flag we now have one further amendment, which I will be detailing in a moment.

But I want to be clear at the outset that Labor still supports the concept of a national digital health record scheme. That's why we established the personally controlled electronic health record under the leadership of the member for Sydney when last we were in government. We did it because we knew that the personally controlled electronic health record could deliver tangible benefits to clinicians and patients alike. It could improve coordination between GPs, specialists and hospitals and cut down on duplication and errors in diagnosis, prescriptions and treatments. And it could save our health system billions of dollars. It is an important 21st-century healthcare reform, and we continue to believe that My Health Record could save money and lives if implemented by a competent government.

Sadly, it's painfully clear that this is not a competent government, especially when it comes to digital service delivery. This is the government that gave us the census failure and robo-debt debacle, after all. In the health portfolio, this is the government that saw Medicare and the PBS data leaked and spent millions outsourcing the National Cancer Screening Register to Telstra in a contract that, several years later, still hasn't delivered a functioning system. And now we can add the implementation of My Health Record to that sad and sorry list. When the opt-out period for My Health Record began four months ago, it became clear that the government had bungled this vital program in two key ways. First, the government failed to communicate with Australians about the risks and benefits of My Health Record and what the opt-out system means in practice.

The opt-out model is a huge change from Labor's opt-in system. Every Australian will need to get a My Health Record unless they tell the government they don't want one. That means that, on the government's current timetable, about 17 million records will be created in the next few months. This moves the system from one of informed consent, a model that is fundamentally principled on the way that health professionals work together with those in their care. Informed consent is based on a very strong relationship of trust and is imbedded across the entire healthcare system. The government, in 2015, took the decision to move to a presumed consent model and provide a period in which people could choose to opt out of the system altogether. It is a significant change in the healthcare relationship.

For a reform like this to work, you have to bring people with you, but the government failed to bring both healthcare professionals and the Australian public along with these changes. There was no public information campaign designed to reach every Australian. It was almost as though the government didn't want people to know what was happening. The Digital Health Agency gave some money to Primary Health Networks to promote the reform. There have been rudimentary brochures printed and some stakeholder groups were given money to communicate with their members, but that was it.

In the opt-out trial sites, the government sent a letter to every person who would be registered for a My Health Record, informing them of the reform—what was happening, what their rights were and what they might need to do about it. That's a common and effective way for governments to communicate policy changes like this, but the government refused to send the same letter as part of the national rollout. It's only been in recent weeks, just before the opt-out period was due to end, that the government started rolling out a proper advertising campaign and it was only as a result of Labor's calls for just such a campaign. It's hard to believe. Again, the government had to be dragged kicking and screaming into doing the right thing.

The government's second mistake was equally damning. Put simply, it's trying to implement an opt-out scheme on an opt-in foundation. Other than minor changes in 2015, the legislation and policies that underpin My Health Record were designed for the opt-in personally controlled electronic health record. In that system, the government could assume informed consent because every consumer with a record had actively chosen to have one. A number of My Health Record features made sense in that context. For example, default settings that keep a record relatively open make sense if someone has deliberately created that record; but, when every Australian gets a My Health Record, many of them without any real engagement, those settings are no longer appropriate.

Those two fundamental blunders led to weeks of controversy on the My Health Record and finally forced the minister to announce the first of its changes. In its original form, this bill made just two changes to the My Health Records Act. First, it amended the act to require a court order or a consumer's express consent in order to disclose health information from My Health Record to law enforcement agencies or other government bodies. Even groups that are generally supportive of the My Health Record, like the Australian Medical Association and the Royal Australian College of GPs, had been alarmed by the government's previous insistence that a policy of the Digital Health Agency would suffice. The bill sets out a range of conditions under which a judicial officer may make a court order to disclose health information, including that the disclosure is reasonably necessary and that the requested information is not available from any other source. Second, the government's bill amended the act to require the permanent deletion of health information for all consumers who opt out of the My Health Record. The act currently requires the information that was held in the record to be locked down but retained until 30 years after the consumer's death. Again, that setting might have made sense when a consumer had previously opted in to the My Health Record and might want to rejoin the record in the future, but it makes no sense in an opt-out scheme.

Labor welcomed both of these changes, but it was clear to us, particularly after the Senate inquiry process, that those changes didn't go nearly far enough. That's why Labor flagged our intention to move six amendments to the bill. These amendments respond to a range of concerns raised by stakeholders during the inquiry—from clinicians, from the major health groups, from legal experts and from the unions. Lo and behold: a few weeks later the government announced that it would be amending its own legislation to match Labor's rescue plan. These changes will toughen penalties for breaches of the act, ensure that health insurers' employees can never access a person's My Health Record, strengthen the protections around the secondary use of identification data for research and public health purposes, address domestic violence concerns by ensuring that any parent with conditional access rights cannot be an authorised representative, explicitly prevent privatisation of the scheme, remove the ability of the scheme operator to delegate to an entity other than an APS employee of the Department of Health, and require that deletion of records also results in the deletion of copies, backups and previous versions of records.

These are all measures that Labor supports. Of course they are, because we came up with them. However, Labor still believes the government must delay the My Health Record rollout by extending the opt-out period. That brings me to Labor's new amendment, which will require the government to extend the opt-out period for a further 12 months, which is in line with a key recommendation of the recent Senate inquiry into the e-health system. We're seeking to make this sensible change because the Morrison government is refusing to do so itself. It is imperative that the rollout does not advance further until all privacy and security concerns are fully addressed.

While this legislation goes some way, there are lingering concerns. A 12-month extension will give the government time to commission and implement a Privacy Commissioner review to address outstanding concerns about system settings. If they don't do that, a Shorten Labor government will. The Senate inquiry found that the government's botched implementation of the opt-out model means that an unreasonable compromise has been struck between ensuring the utility of the system and safeguarding the privacy and safety of healthcare recipients. That's why we want a Privacy Commissioner review that would consider, among other things, the appropriate balance between utility for clinicians, patients and others, such as carers; privacy and security for individuals; the difficulty of ensuring informed consent in an opt-out model; measures to encourage consumer engagement and informed choice; changes to default access settings that are necessary because of the shift to an opt-out model from an opt-in model where informed consent was assured; and particular protections for vulnerable people, including minors aged 14 to 17 and families fleeing domestic violence. A 12-month extension will also give the government time to reach every Australian with its new public information campaign so that people can make a fully informed choice about whether they want to opt out of the scheme.

Under the government's current timetable, the opt-out period is due to finish this week. Once it does, the government will begin creating records for 17 million Australians whether they want one or not. This will occur even though the government hasn't actually passed this legislation yet. In fact, it cannot pass it before the opt-out period ends, meaning that some Australians may opt out unnecessarily over concerns that are addressed by the legislation. Assuming that the Senate agrees to this bill, with or without formal amendment, it will need to return to the lower house for approval. But the lower house doesn't sit again until the end of the month—10 days after the opt-out period ends—meaning that there's no guarantee that this legislation will even pass this year. And next year is an election year. As we know, an election could be called before parliament returns. The My Health Record rollout must not advance until the clean-up legislation has passed the parliament. As I said at the outset, Labor supports e-health, but we have to get this right. The government's bungling very nearly killed off this reform. Let's take the time now to fix this mess.

10:10 am

Photo of Richard Di NataleRichard 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—

Photo of Zed SeseljaZed Seselja (ACT, Liberal Party, Assistant Minister for Treasury and Finance) Share this | | Hansard source

The voice is in his head!

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

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.

10:30 am

Photo of Catryna BilykCatryna Bilyk (Tasmania, Australian Labor Party) Share this | | Hansard source

I rise to speak on the My Health Records Amendment (Strengthening Privacy) Bill 2018. This is a very, very important bill, and one which we really have to get right. But, regretfully, it's been pretty clear, in the minds of the Australian people, that this government has failed in its management of the rollout of the My Health Record system. I'm disappointed that this government's failures have led to such unnecessary anxiety and distress and have seriously damaged public trust in a system that should have provided a positive outcome for health care in Australia. It's clear, once again, that the government's myopic focus on internal politics has kept them from governing sensibly, responsibly and in the interests of all Australians.

Let me be clear: Labor support e-health and the concept of the My Health Record. It was Labor that kickstarted the development and implementation of an electronic health record system when we were last in office. The electronic health records could provide significant improvements to the way Australians receive health care. Some of the advantages include: improving coordination between GPs, specialists and hospitals; and cutting down on duplication and errors in diagnosis, prescriptions and treatments.

Implemented by a competent government, e-health records could deliver tangible healthcare improvements while making cost savings that could be reinvested in the healthcare system. Implemented by a competent government, e-health records could save lives. However, this government have demonstrated gross incompetence and have seriously botched the implementation of their opt-out scheme. Those opposite have a track record of dramatically failing in their implementation of information technology solutions, and it was this government—we should all remember this—that gave us the census and the robo-debt debacles. Disappointingly, we've also seen Medicare and PBS data leaked and the absolutely disastrous outsourcing of the National Cancer Screening Register to Telstra, which still hasn't delivered a functioning system. Only a government as incompetent as this one could roll out a second-rate National Broadband Network using outdated technology and yet still experience delays and cost blowouts. Now we can see the added implementation of the My Health Record system, and we can add that to that sorry list. The blame for this lies squarely at the feet of this government.

Labor tried to warn the government that their My Health Record implementations were flawed. Even as far back as 2015, which I think is when the My Health Record bill was passed, Labor shadow minister Catherine King moved a second reading amendment which noted 'the inadequacy of this bill in making real improvements to a national electronic health record system'. Although the government voted down the amendment, wouldn't you think that they would have at least heeded its warning and maybe had a look at it? But they didn't, and just last month we found ourselves once again trying to clean up another government mess.

The e-health system Labor began implementing was opt in, and we thought that was the right approach—so anyone who participated had to give informed consent. However, the changes made by the government in 2015 moved the system from one of informed consent to one of presumed consent. Informed consent is a foundational principle on the way that health professionals work together with those in care. It's based on a very strong relationship of trust and is embedded across the entire healthcare system. Moving to a presumed consent model and providing a period in which people could choose to opt out of the system altogether was a very significant change. It was both legal and ideological, as well as representing a significant change in the healthcare relationship.

Bringing both healthcare professionals and the Australian public along with these changes is absolutely essential to its success. It requires properly and consistently explaining to the Australian public not just how the opt-out system works but why this change is even necessary. However, the government decided in its own stubborn way and without proper public debate—yet again—to make My Health Record an opt-out system. They failed, in their arrogance, to properly explain why or even to make a vague attempt to educate the public about their approach.

Their failure to communicate has fuelled many of the privacy and security concerns Australians have had about My Health Record. It's these concerns that have led to more than 1.1 million Australians opting out of having a My Health Record since the beginning of the opt-out period. The government could have communicated with the Australian public quite easily. The government could have sent Australians a letter, like they did in the small opt-out trial sites that they ran, but they choose not to do that, obviously embarrassed by the mistake of sending letters in the trial sites to people who were deceased. They could have run TV advertisements—and, let's be honest, the government generally have no problem running advertisements that promote their policies—but they didn't do that either. While the Australian Digital Health Agency could afford to spend $81 million on consultants last year alone, it's disappointing that they couldn't spend money explaining a fundamental change to how Australians' private health data is stored and shared. In July, as the opt-out period began, all of the criticisms that the government hoped to keep quiet came flooding out. While the botched rollout of the opt-out period occurred under Mr Turnbull's government and undermined public trust in the important reform, it's really disappointing that the Morrison government still couldn't get it right.

This bill responds to public anger over the scheme by making some changes that Labor welcomes. The changes include requiring law enforcement and other government agencies to get a court order to access records and permanently deleting the health information of people who opt out of the My Health Record. These are positive changes, and we support them, but, as Labor senators noted in the reports of two Senate inquiries—one into the bill itself and another into the My Health Record system more generally—the changes in the bill do not go far enough. The Senate Community Affairs Legislation Committee inquired into this bill and reported on 12 October 2018. Despite the Minister for Health dismissing the inquiry as a stunt, which is typical of this government's approach, the completed inquiry revealed a range of serious flaws in the current legislation that were not addressed by the government's bill.

We've had grave concerns about whether the bill sufficiently protects vulnerable people. For example, this bill does nothing to address concerns that My Health Record may risk the safety of women fleeing from abusive partners, or children needing privacy from non-custodial parents. Workers have also raised concerns that doctors who perform pre-employment or workers' compensation assessments may pass health information to employers and that employers could use this information to discriminate against employees—for example, on the basis of pre-existing medical conditions. These are basic flaws that need to be fixed.

Submitters to the Senate inquiry had important points to make about their concerns with the bill, and I'd just like to share a few with the chamber. Australian Lawyers Alliance expressed concern. They say:

… the inadequate measures in place to protect the medical records in the My Health database from 'coercive sharing', where individuals may be coerced into providing access to their medical records when applying for employment or seeking insurance products.

The Australian Association of Social Workers strongly recommended:

… much greater consideration needs to be given to victims and survivors of family violence, including safeguards to assure that the record is not used to further perpetuate abuse.

In their submission, the Australian Medical Association expressed concerns about insurers having access to the data. The AMA told the committee:

The AMA shares the media concern that health insurers should not have access to My Health Record data. Their interest in this data presents a clear conflict of interest between the financial benefit of avoiding fund members who are high risk claimants and their obligations to abide by the principles of community rating. The My Health Records Amendment (Strengthening Privacy)Bill 2018 presents an opportunity for a further amendment to the Bill to remove all doubt data sharing with health insurers will occur at some point in the future.

Labor senators, in their dissenting report on the inquiry, signalled our intention to move amendments to this bill. We want to ensure that the My Health Record can never be privatised or commercialised; that private health insurers can never access My Health Record, including de-identified data; that employees' right to privacy is protected in the context of employer directed health care by including a clause similar to section 14(2) of the Healthcare Identifiers Act in the My Health Records Act; that vulnerable children and parents, such as those fleeing domestic violence, are protected by narrowing the definition of parental responsibility; and that the system operator, the Australian Digital Health Agency, cannot delegate access to My Health Record to other entities. These amendments seek to address concerns raised by medical professionals, law experts, domestic violence advocates and unions throughout the course of the inquiry.

Labor also initiated the broader Senate Standing Community on Affairs Reference Committee inquiry into the My Health Record framework as a whole. This inquiry focused on elements of the system that are beyond the scope of this bill such as the government's position to switch to an opt-out system, the communication of this change, and default settings with the record. The report of the references committee inquiry was tabled on 18 October. This report had several recommendations relating to privacy and security. They included that access codes be applied to each record as a default and can only be overridden in an urgent situation, that the privacy of 14- to 17-year-old children be protected and that the period for which a My Health Record can be suspended in the case of serious risk to the healthcare recipient be extended, as well as a range of recommendations strengthening protections against the use of My Health Record data for secondary commercial, employment or insurance purposes.

We welcomed the government's announcement just last week that they will be taking up Labor's suggestions and moving amendments to this bill to address the numerous concerns raised by stakeholders. For several weeks Labor has had these sensible changes on the table, yet the Minister for Health, Mr Hunt, has refused to engage with us. They say that imitation is the sincerest form of flattery, but it is simply not good enough that the government is scrambling to implement our changes at the eleventh hour. With only tomorrow before the end of the opt-out period, it's absolutely vital that the period be extended. This bill and the government's amendments will not pass the parliament in time for important privacy and security provisions to be put in place before the end of the opt-out period. The House of Reps doesn't even sit again for more than a week after the opt-out period ends, and it's not sitting this week either. This means that some Australians may actually opt out because of the privacy concerns that could have been addressed by the bill when it finally passes. Rather than rushing at the last minute to fix its My Health Record mess, the government actually needs to take a deep breath, take a step back and take the time to get this reform right.

The Senate has joined Labor's call passing, I think, Senator Watt's motion on Monday which calls on the government to:

… extend or suspend the opt-out period until the legislation and any amendments are passed, outstanding privacy and security issues are addressed and public confidence in this important reform is restored.

We've also called on the government, given the numerous privacy and security concerns raised about My Health Record, to commission an independent review of the My Health Record system by the Privacy Commissioner and the Office of the Australian Information Commissioner. This review should consider the appropriate balance between utility for clinicians, patients and others, such as carers, and privacy and security for individuals; the difficulty of ensuring informed consent in an opt-out model and measures to encourage consumer engagement and informed choice; changes to default access settings that are necessary because of the shift to an opt-out model; particular protection for vulnerable people, including minors aged between 14 and 17 and families fleeing domestic violence; and further legislative policy and system changes that are needed to achieve these aims.

Our concerns and our call for an independent review have been given further impetus by recent revelations now that the Australian Digital Health Agency's director of privacy has quit. An articleinThe Sydney Morning Heraldon9 November said:

… sources close to Ms Hunt confirmed that she had left the business out of frustration that privacy and security concerns her team had raised with senior management were often ignored.

One of the sources was quoted as saying ADHA's privacy staff were 'disillusioned', that there was a pattern of 'not listening' at senior levels of the ADHA and within the health minister's office and that concerns were treated simply as management or public relations issues. That's not good enough. It's understood that, of the agency's privacy team, which consisted of four staff, one has moved overseas and another is going on leave for 12 months. With the director's departure, this will leave just one dedicated privacy staff member at the ADHA from December, and that's pretty concerning; in fact, it's extremely concerning. The fact is that there are privacy concerns being raised, not just by Labor and not just by stakeholders in the submissions to the Senate inquiries but within the ADHA itself, and that adds a great deal of weight to our call for an independent privacy review.

Also adding weight to the call for an independent review is the recent news that 99 My Health Record data breaches have been reported to the Office of the Australian Information Commissioner, including 11 breaches since 1 July this year. At the same time as the OAIC was reporting multiple breaches over the course of the past six years, a spokesperson for the health minister claimed there has never been a reported security breach of the system. Why is there a disparity between the reports of the OAIC and the minister about whether data breaches have occurred and how many? The conflicting claims of the minister's office against those of the OAIC, the concerns raised by not one but two Senate inquiries and the reports from within the agency itself all demonstrate the vital importance of an independent privacy review of the My Health Record system. They also strongly support the case for an extension to the opt-out period. As I said before, the deadline for that is 15 November—that's tomorrow—so this suspension must be announced immediately.

Labor will be moving an amendment to this bill to insert a 12-month extension. A 12-month extension will give the government time to run a new public information campaign that reaches every Australian and allows them to make a fully informed choice about whether to opt out of the scheme. It would also give the government plenty of time to commission an independent review of outstanding privacy concerns with the system. We welcome the government's attempt to finally fix the flaws in this bill, but this bill should be the first step to fixing their My Health Record mess, not the last.

Had the government agreed to work constructively with Labor to fix the problems with the rollout rather than be obnoxious and say, 'We know best and we know how to do everything,' we may have been able to help save them from their own shambolic mess. If they heed Labor's call to extend the opt-out period and to commission an independent review of the privacy and security concerns, they just might be able to restore the trust to the medical profession and the broader Australian public. Unfortunately, for this incompetent government, public confidence in their ability to implement this important reform is currently at an all-time low. But it's not just the government who will suffer from the mess that they've created. Until this mess is fixed, millions of ordinary Australians will miss out on the benefits of an electronic health record because they cannot trust the privacy and the security of the Morrison government's My Health Record. I urge the government and crossbenchers to support Labor's sensible amendment for an extension of the opt-out period.

10:48 am

Photo of Lisa SinghLisa Singh (Tasmania, Australian Labor Party) Share this | | Hansard source

I think everyone in this place would agree that Australians should have the right to privacy. Our health records are the most highly personal information. It's information that we entrust to medical professionals acting in our best interests. I cannot think of a more important privacy relationship than that between a patient and their health professional. That is why it is so important that we get this My Health Record model right. What is clear from the Senate inquiry that has gone into this legislation is that currently we don't have it right—so much so that, as we speak, thousands, if not now millions, of Australians are on their phones and on the internet opting out of the My Health Record scheme proposed by the government. This government has lost the public trust debate, and that is why Labor has made it very clear that we want to put in place amendments to this legislation to put back the public trust that is so needed in this My Health Record debacle.

This debacle isn't the only one there has been, when we look at the government's record in the area of information technology. The government have a woeful track record on IT security and privacy. They botched the rollout of the NBN, they botched the rollout of the NDIS, they gave us a census fail and they gave us the robo-debt debacle—and now they have stuffed up My Health Record. If you look at the record of this government and its previous versions on sensitive data security, I think the Centrelink robo-debt debacle stands out, with lots of bells and whistles on. But, then again, what about the immigration department database breach that put the lives of asylum seekers at risk by revealing their details?

These are just a couple of examples of how this government has simply failed when it comes to information technology security and privacy, and that is why Labor is calling on the government to extend the deadline for My Health Record to go live, which it is due to do from tomorrow. In fact, my Senate colleague Senator Watt successfully passed a motion in this place this week asking for exactly that. I think the Senate, and indeed the government, should respect the passing of that motion and the amendment that Labor put forward to ensure that that happens for the sake of all of the Australians who are worried today, and who have a right to be worried, because this government cannot be trusted in how it is dealing with these sensitive privacy and security issues.

I'm also deeply concerned about some of the failings in this bill as it stands without amendment. I'm deeply concerned by the potential use by third parties of patient information. I think there is definitely a need for further protections for privacy and security, both in legislation and in policy. We need a government that will take all Australians with them to do that, to discuss and educate them about the benefits of My Health Record, which there clearly are, but also the risks, so that everyone can make an informed choice about whether to participate or not. That takes time, and it is something that this government hasn't done. It has failed to do that, which is why we're asking for an extension of the deadline.

What happens if you find that your data has fallen into the wrong hands? Katharine Kemp and David Vaile from the University of New South Wales law school and Bruce Arnold from the University of Canberra law school noted in a piece in The Conversation recently:

We have witnessed a stream of health data breaches in Australia and overseas, and the incentives for these breaches are only increasing.

Storing records digitally with online access greatly increases their accessibility for criminals, hackers and snoopers. Health records are valuable as a means of identity theft due to the wealth of personal information they contain. They are a huge prize for hackers, fetching a high price on the Dark Web.

That is really concerning, and I think everyone would share that concern. But, when discussing a medical condition with their doctor, Australians should not be concerned that it will end up in the wrong hands. There really should be the most searching review into the operations and behaviour of the Digital Health Agency, the ministers who signed off on this and the costs of the public disinformation campaign so far that has, I think, misled not only the parliament but, more importantly, the public. It needs to be reversed. We need to have information. We need to have education about the benefits and the risks, and that case simply has not been made by this government.

We need to remember very clearly some of the rhetoric that's come out of Minister Greg Hunt on this issue. I know that the government has now put itself in a position to bring forward amendments of its own bill, but I think we all need to remember that these changes the minister is making he was forced to make. He was not going to make any changes to My Health Record. These are not changes that he willingly has made. If you remember when Labor initiated the Senate inquiry, this health minister said it was a stunt. For a minister of the crown, of this government, to claim that the important process of legislative investigation through Senate inquiry—into something so pivotal, so important, when you're talking about privacy and security—was a stunt but then to go further and acknowledge, through the findings of that Senate inquiry, that his legislation was flawed and did need amendment and that he has now brought forward those amendments shows very clearly the failings of this minister. It also shows that he has provided disinformation to the Australian people on what he set out to do in the first place. Of course, they've now amended their own legislation. But I think we needed a much more informed consent model, and we didn't have that from this government.

It's not just those of us who were on the Senate inquiry or consumers who are raising some of these concerns; they are coming from health professionals themselves. They're coming from doctors themselves, who've made it very clear, saying, 'Yes, we want to have this partnership with patients.' They think the idea of the My Health Record is important but they also want to make sure that this relationship is not in any way jeopardised by the notion that the information is automatically shared and that patients can't have full control of it. They've raised those concerns throughout this process, particularly throughout this important Senate inquiry process.

In Tasmania, my home state, doctors have approached me with their own concerns. They have made me very aware of their worries about this simple tick-a-box approach. Errors on requests for pathology imaging tests can occur. Poorly edited shared health summaries or errors with pharmacy dispensing notifications may cause unintended or incorrect uploads of data, particularly with the My Health Record. Tasmanian doctors have made me aware of their concerns about what these records will mean for young people. They can foresee an inordinate amount of extra time and effort to ensure that their young patients completely understand the structure, the methodology and the supposed benefits but also likely risks of My Health Record and the real need for them to be alert for exposure of their sensitive information if they do not have control of their personal My Health Record.

The possible and increasing threats to their personal information coming from cyberspace, I think, are real. But the negative publicity around My Health Record also gives the likelihood that teenagers may—this is an unintended consequence—refuse to consult with their doctor, or other health professional such as psychologists, through the Medicare system. That would be terrible. To have a loss of faith would be catastrophic for Australian health care, with serious consequences for those patients over not just the short and medium term but also the long term. The doctors I've spoken to do fear it would all but destroy that long accepted recognition by young people that doctors will safeguard the confidentiality of their records.

Labor's privacy and scrutiny concerns about this were clearly expressed through the Senate inquiry process and through the committee report process. We laid bare the government's botched implementation of this opt-out model. We made additional comments in that report which urged the government to commission an independent review of the My Health Record system by the Privacy Commissioner and the Office of the Australian Information Commissioner, which has itself called for further consideration of several privacy and security concerns. In particular, we highlight that the Privacy Commissioner and the OAIC should consider the appropriate balance between the utilities, the clinicians, patients and others, such as carers; privacy and security for individuals; the difficulty of ensuring informed consent in an opt-out model; measures to encourage consumer engagement and informed choice; and changes to default access settings that are necessary because of this shift to an opt-out model from our original opt-in model, where informed consent was assured.

That is part of the big problem here: the fact that the government has changed this from an opt-in model—which is what Labor's proposal and the legislation were originally—to an opt-out model means that the issue of informed consent is limited and jeopardised. Further, we ask for particular protections for vulnerable people, including minors aged 14 to 17 and families fleeing domestic violence. Further legislative policy and system changes are needed to achieve these aims, but in the meantime I think that the government does need to heed Labor's call and support Labor's amendment—and I urge the crossbench to do likewise—to suspend the opt-out rollout until the Privacy Commissioner and the OAIC report is taken into account, until the government makes those necessary changes and until public confidence in this important reform is restored. That's all going to take time. It's simply not going to happen overnight and it's simply not going to happen by tomorrow, with that date looming for the government's proposal.

The government needs to explain to the people of Australia what it's doing to minimise these risks, otherwise the whole enterprise will be hobbled by distrust and scepticism, and we'll never move away from that. This reform needs public support to work and, unfortunately, that's where the government has failed. We certainly support the amendments that the government will be moving, particularly in relation to issues around domestic violence, employers and workers compensation. But these are all amendments, as I said earlier, that we signalled months ago. Of course we're pleased that the government is basically picking up Labor's recommendations now.

But, that said, we still think there are issues around the default settings of My Health Record that do require the Australian Privacy Commissioner to have a look at this whole thing again. We think that 12 months is a reasonable time for our Privacy Commissioner to look at this, to see whether those default settings are right. And at the same time that is going on, throughout that 12-month period government could be running an education campaign, not just telling people about the benefits of My Health Record but actually telling them what they need to do to actively manage this very important piece of health information—their My Health Record. There needs to be that consumer confidence put into the system, and it's simply not there at the moment.

I think that what has also been clear is the role of and concern about the Digital Health Agency, in particular: what exactly are doctors being paid to sign up their patients to do, and what for? What information about access and usage has or has not been fully—or at all—disclosed to them? Again, those are unknowns. I think, though, implemented by a competent government, e-health could deliver tangible healthcare improvements and save healthcare costs through perhaps fewer diagnosis, treatment and prescription errors. I think that that could actually work. But what we don't want to see is people's patient health records falling into the wrong hands. We certainly don't want to see it privatised—there should be no privatisation of patient records—and we don't want to see it falling into the wrong third-party hands at any cost at all.

That's why, when we began delivering on electronic health record systems when we were last in office, our system was an opt-in system. We thought that that was the right approach. Anyone who participated had to give informed consent; they had to give their full, informed consent. But this government has failed on that completely. Worse, it seems to have actively refused to communicate with Australians about the risks to My Health Record and what this opt-out system means in practice. What worries me today is how many Australians are unaware and do not realise that tomorrow is the deadline for opting out of this model if they choose to do so. Very concerning to me today is the fact that they haven't been given that education, communicated by government, of what this opt-out system means to them and what the risks and the benefits of their My Health Record are.

I think the absolute failure by Minister Greg Hunt and this government to communicate has fuelled so much of the privacy and security concerns that Australians quite rightly have about My Health Record. It didn't have to have come to this, but it has because of the failure of this government. When the Senate Community Affairs References Committee was scrutinising the My Health Record system in September, representatives of the Australian Digital Health Agency conceded that more than 900,000 Australians at that point had already opted out of My Health Record. It is well over a million today, and goodness knows how many more by tomorrow.

With one day left before the deadline my message to Australians is: please make yourself informed today about the options and about not only the benefits but also the risks. Choose what you want to do today, whether or not you wish to opt-out. But, more importantly, my pitch this morning to this chamber, to the government and to the crossbench is: please support Labor's amendments. Support these amendments to ensure that we put back in place the trust that Australians need in this My Health Record model. We need more time to get this right. It is nowhere near right as it currently stands, despite the government's amendments that they were dragged here to put forward. We need more time, we need the review and we need to ensure that Australians trust what we are doing when we say we want to ensure we have a great health system with a digital capacity to improve efficiencies. We are simply not there yet. Please support Labor's amendments to this bill.

11:08 am

Photo of Murray WattMurray Watt (Queensland, Australian Labor Party) Share this | | Hansard source

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—gets 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 in is 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 has 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 then 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.

11:28 am

Photo of Stirling GriffStirling Griff (SA, Centre Alliance) Share this | | Hansard source

The My Health Records Amendment (Strengthening Privacy) Bill 2018 represents an opportunity to address some obvious flaws with the current My Health Records Act. Many of us here in the chamber have, for a long time, held concerns about the pace of the rollout of the opt-out system and what seems like a dismissive approach to valid privacy and security concerns.

My Health Record started life as an opt-in, personally-controlled health record system, so it's perhaps unsurprising that it's had such a rocky journey towards a national opt-out system. I'm glad that the government has finally sought to amend two of the more glaring problems in the act that were undermining trust in the system. Under this bill, cancelled records will actually be cancelled and not simply deactivated and put on file somewhere for 30 years after the person's death. Common sense has very much prevailed here because to do otherwise would be very much unnecessary, even ridiculous, and would mean that if you had cancelled your record it still existed and, in the worst-case scenario, could still be accessed by hackers in the event of a security breach.

The bill will also require enforcement agencies such as the police and the immigration department to require a court order before they can access an individual's My Health Record. Previously, they could literally just knock on the door and ask the system operator for them, and all the Australian Digital Health Agency had to do was reasonably believe that it was necessary to hand them over. How's that for due process? How's that for privacy? Somehow it was decided that this should be permitted, even at the risk that it might dissuade some people from taking out a My Health Record, not necessarily out of fear but perhaps more out of an abundance of caution.

We know from estimates that Tasmania Police have made one request to access a person's record, but that person didn't have a record so it became a moot point. We have no information on what would have been deemed a reasonable belief. This bill seeks to patch up that lax and subjective approach to oversight by requiring enforcement agencies to obtain a court order first, but we think this is closing the door after the horse has bolted. I can see why government would be keen to allow enforcement access to this massive database as a last resort, but we contend that it is an inappropriate use of the system. I'd like to remind everyone that the original intent of the My Health Record system was to improve people's management of their personal health and, in particular, to improve the delivery of health care for patients with chronic and complicated conditions. As a database, it should only be used for public health benefits. To open this database to designated entities, such as the police and the immigration department, for non-health related purposes is very much mission creep. That is why we have proposed an amendment to remove enforcement access to My Health Record, even under warrant, unless it relates to fraud or misuse of the My Health Record itself. We think this is a sensible balance that better protects people's privacy and protects the integrity of the system. The type of information available through My Health Record would be available through other means at the government's disposal, such as Medicare, for example. No-one can give us even a hypothetical circumstance under which the record would be needed by enforcement agencies.

As to the other amendments before us, we agree that the opt-out period needs to be extended well past tomorrow to give people more opportunity to be informed about the record and to take action if they don't want it. However, there does seem to be disagreement between the parties as to how long this should be, in terms of weeks or months. We've been lobbied on four weeks and up to 12 months. We don't believe that four weeks is long enough to allow the changes in this bill and continued public education to filter through, but we also think that there is momentum now that we should build on and that 12 months is too long a period. Centre Alliance is happy to accept the government's amendments, which address many of the concerns that were raised during the references inquiry and which other parties would have moved on if the government hadn't.

We absolutely agree that there should be no access to the records for employers or insurers. Private health records should have no bearing on the decision to employ someone or to insure them. We also support the proposal to remove access for parents who are under a supervision order, apprehended violence order or otherwise pose a risk to the health and safety of a child or authorised carer. We accept the evidence provided by the health professionals during the recent references inquiry that we need to give teenagers more control over their record. While PBS data will not be visible in a child's My Health Record after the age of 14, other sensitive information, such as pathology reports, will be visible unless the teenager takes control of their record, so we accept the Greens' amendment which serves to prevent parents accessing the record of their child after the age of 14 without their written consent. After all this, we will have a vastly improved system, though still nowhere near perfect.

I have to say that none of this does enough for me personally to persuade me to sign up, so I have opted out. I'm not at all convinced that the system will be as secure and seamless as the government and the ADHA assures us it will be. We know that health records are a major target for hackers, here and overseas. We also know from media reports and the Community Affairs References Committee inquiry on My Health Record that security experts have expressed concerns at the centralised nature of the database. Your health data is incredibly private and intimate. Even if you feel you have nothing to hide, it is the last thing you want in the hands of the police, in the hands of hackers, or out of your hands at all.

11:35 am

Photo of Deborah O'NeillDeborah O'Neill (NSW, Australian Labor Party, Shadow Assistant Minister for Innovation) Share this | | Hansard source

I rise to make a contribution to this debate on the My Health Records Amendment (Strengthening Privacy) Bill 2018. It is of importance to so many people. Just to describe the reality: so many Australians get on and live their lives in complete blissful ignorance of what we do here, in either the green chamber or the red chamber. But those who paid attention at school understand that the red chamber is the house of review, where we get to look at whatever legislation comes through and do this process of amendment that many Australians don't understand. Basically, it's the second chance you get to have a look at what the legislation's doing. If it's doing something really bad, there are a couple of things we can do. We can have an inquiry, where we get experts from around Australia to talk to us, and we can also make amendments. That's what we're trying to do here today. We're doing it in a way that reflects, sadly, the chaos of this government, which has been completely focused on itself.

We were here a couple of weeks ago. If this government had any control over what they were doing and weren't so obsessed with the infighting that's become the hallmark of the Abbott-Turnbull-Morrison government, we wouldn't be doing this at the last minute. But here we are, literally at the last minute, in the Australian federal parliament, in the Senate, trying to protect 17 million Australians from this government's failure to carefully look at legislation that they brought in here, that they said was going to be fine and wouldn't have any problems. But those of us here today in the chamber—on behalf of the Australians who are out there at work, looking after their families, working in their community and getting on with their life—are witnessing what an opposition does, certainly what a Labor opposition does, in trying to prevent the worst excesses of what this government is trying to inflict on Australians as of tomorrow night. That's how 'last minute' we are.

Why should we be concerned about this government when it has anything to do with technology? Let's look at a few of their failed technologies that are experienced by too many Australians. Let's look at the rollout of the NBN, which was supposed to be a brand new technology. It's absolutely vital to the economic wellbeing of the country. There was an opportunity, through Labor, to roll it out into regional areas and build the economy. They stuffed it. Instead of giving us a fibre network for the 21st century, they opted for a copper network from the last century. I'm sure that you, like me, have had your problems in dealing with the NBN to try and maintain access. Businesses across the country have had terrible troubles. That's the litany of problems that we see with this government. They don't seem to understand technology. They're not up with the 21st century. You can see it just by looking at them. There are so many blokes; there are hardly any women there. They're behind the times, and they're behind the times on this legislation. We're doing this last-minute effort to try and save 17 million Australians from having this government's flawed legislation impact our lives. That's what we're doing right now. We're going to vote on it pretty soon, probably. The Labor Party is very clear about our role in opposition in terms of protecting the Australian people.

They've failed on a whole lot of other fronts. The rollout of the NDIS is a debacle. Do you remember the census? 'Everything will be fine,' they said. They privatised a little bit here and a little bit there and said, 'It will all be fine'. Come census night, it crashed. What's going on right now is that Australians—the ones who are listening, the ones who aren't too busy actually living their lives, who believe that this government is looking after them—don't know what's going to happen tomorrow night; they don't know what it's going to do. So people who are just waking up to the fact that this is going to impact their lives have decided that they're going to opt out. And the system's crashing as we speak, with 17 million people never going to be able to be accommodated by that system in the next 24 hours. That's an impossibility.

If this government were to come anywhere near looking at the truth of the situation that we're in, they would not be continuing to push for this legislation in the form that they've advanced it. They would make the change. They would grant what you just heard Senator Watt speaking about—the 12-month extension that we are seeking. They would responsibly do that. Instead, we've got them pushing for this to be cleaned up by tomorrow night because they don't want everybody to see this mess continue. They just want to put it aside and then they can focus on their internal troubles again. Well, it's not good enough for Australia. It's not good enough for all Australians, and it's certainly not good enough for the 17 million who, as of tomorrow night, will have a permanent health record if this government get their way.

How did we get to this spot? This is one of the things that surprises me about this government, and I'm sure it would surprise you too: when you put legislation forward, it's a good idea that you check with people. This legislation really did start quite some time ago, in terms of a personally controlled electronic health record under Labor. We actually think it's a good idea that, if you're travelling around the country or overseas, you've got all your documents in one place and they're accessible to you. But we believe, unlike the government, that you should be in control of that information and who can see it, just like when you talk to your doctor. Getting health care relies on a therapeutic relationship of trust. Your personal information is of value to you and your doctor. It should be controlled by you and your doctor.

What was originally proposed by this government was legislation that didn't make enough of a change from an opt-in system to when they decided, 'Let's just get the job done and we'll make it opt out and everybody will just have to put up with it.' That's the arrogance and the hubris that we see from this government continually. First of all, they said, 'Everything's fine—don't worry about it; there's nothing to see here.' Labor said: 'There's no way that this is okay. We've got to have an inquiry into this.' The Senate needed to do one of those things that I said it has the power to do—to have an inquiry and get the experts in, because we know the government hadn't spoken to them. The experts came on, and we've had a number of recommendations. Along the way, the government have, with resistance, finally come to a couple of amendments, because even they, in their arrogance and hubris, in their ignorance of the reality, had to acknowledge some of the experts and make a couple of changes.

But Labor thinks there are a lot more changes that need to be made. That's why Senator Polley, in her speech this morning, foreshadowed six significant amendments that Labor will be advancing. They're very, very important. We know that one of the concerns that has been raised is that there could be a breach of the act. Somebody who might think that your information is valuable to them, even though it's the law, might break the law. So one of the things we're recommending is that, for a breach of the act, there should be tougher penalties. We have to provide a great offence for those who are actually going to be caught up in this system.

Senator Watt, in his recent contribution—and I acknowledge Senator Griff mentioned this as well—said that we've recommended changes to address the concerns around domestic violence and employer access. Happily, I haven't had this personal experience, but people who flee domestic violence do so at incredible risk in a very vulnerable period of their life. It's not surprising that they might have to visit doctors and get support for themselves and their children in such a situation. There are insufficient protections in this bill, as advanced by the government, to ensure that a perpetrator of domestic violence is unable to track down a family that has fled from a violent situation. That's a problem; that's one of the problems. Even if that were the only problem, you'd think the government would wake up and say, 'We'd better slow down on this; we'd better fix it up.' But no: they want to press ahead regardless.

The other issue we think needs to be addressed—concerns that have been raised with the committee—relates to employer access. I have to say that I feel pretty fortunate that, in the work I've done, I would not be concerned, for the most part, that my employer would have accessed my My Health Record documents. But I can tell you as the shadow assistant minister for mental health to Julie Collins from the other place, the member for Franklin, that there are lots of concerns about mental health records and the way in which they are used. They've been raised over and over again. In a recent inquiry that we had into the insurance industry we had testimony, day after day, from people who were denied insurance. One woman was denied insurance for 20 years because she had a period of postnatal depression. For 20 years she couldn't get insurance because of that single incident in her life—how appalling.

Mental health records impact very significantly on peoples' access to insurance, and unscrupulous people will access these records. We don't have sufficient protection from this government to make sure that employer access is absolutely denied. There are many situations you could think of. Would a young woman looking for work really want her employer to be able to find out whether she was using contraception or not? Is it really within your employer's rights to find out that at age 12 there was a short period during which you had an eating disorder? Is that really within your employer's rights? If I asked you—man, woman or child—you would say, 'No; that is a matter for me and my practitioner.' What we're seeing at the moment from the legislative agenda of this government is a failure to adequately deal with that level of protection that I think is a fair thing for ordinary Australians.

We also are still very concerned that this government, which moves to privatise everything—or a future government with the same kind of attitude—could find a way to sell off information. It's wrong on every single level; it is an intolerable position. But there is not adequate protection in the legislation that this government has brought forward. I bet that the day they should have been looking at that they were doing something else—maybe having a few discussions in the corridors and on phones to one another, talking about taking out Mr Turnbull and putting in Mr Morrison. That's what they do. That's what they've been doing. There is no excuse for legislation with so many failure points to be advanced into this Senate chamber, except that they have stopped paying attention to the job they're supposed to be doing as a government and instead have gone on a flight of fancy of their own making. They've decided that they're just going to have warfare inside and have forgotten to do the job they're employed to do here for the Australian people, which is to advance careful, considered legislation that is full of insight as a result of careful consultation with experts across this country.

We're also very concerned that insurers should not have access to this information. I'm sure you share that concern with me. Like you, I'm sure, I don't watch much television; I have a very full life and I choose most of the time to read, talk to family, go for a walk, play some music or something like that, rather than watch television. But in the little bits of time that I've been watching television, just recently I've noticed, just as you might have noticed, a few TV ads that tell you something about this My Health Record. Why you didn't hear about it months and months and months and months ago is because the government didn't think you needed to know. The only reason that you have any advertising going on across our country right now about this issue that will affect 17 million Australians and that is going to be determined tomorrow night unless we can force the government back—the only reason those ads have gone onto television is because the Labor Party here, on this side of the chamber in opposition, have made such a song and dance about it that they had to put some money into advertising. But 30 seconds or even a 60-second ad cannot tell you the detail of risk to the Australian population that I've been able to put on the record now for the 15 minutes I've been talking. I'm sure you're more aware about things now after 15 minutes than you would be after a 30-second ad.

That's what we've got. A little balloon has gone up to say to people: 'You're going to get a health record. It's going to be really good for you'. If I choose it, if I'm in control of it, if I'm confident that no-one else can look at it who might exploit me, then it would be a good thing, but that is not where we are. It's absolutely not where we are today.

The Labor Party is calling for the government to support all of the amendments that we have proposed. It's a difficult thing to fix legislation that is so flawed and ill-matched to what they've decided to do, to switch from an opt-in system to a 'You've got to choose to opt-out' system. That's where they made hair biggest mistake: they didn't recognise the scale of the difference that that made. Given the mess of the legislation, given the concerns that we still have—and our amendments, if they get up, will be some form of protection—we think it's still not good enough and that there shouldn't be a deadline tomorrow for 17 million Australians who are just really starting to get a handle on what this government's about to do to them.

We say there should be a 12-month moratorium, a 12-month delay so a couple of things can happen, including, for starters, Australians getting more than 60 seconds of information about this. We think there should be a 12-month delay so that experts can continue to provide good counsel to a government that has ignored them for far too long. We think there needs to be a 12-month delay so the Privacy Commissioner, who's pretty good at his job regarding privacy, can look at what Australians need to have in place to be confident that our privacy is protected—our privacy around health, critical, intimate information about you and I, about our kids, about grandparents. We need that privacy. Many of you probably don't even know that we've got a Privacy Commissioner, but we have, and this is exactly the kind of job that a privacy commissioner should undertake. It is their task to look at the impact of changes—particularly legislative changes—that might erode the current privacy that Australians have access to. That is really why we are seeking support of the crossbench today. There might be proposals around three months, six months or 12 months, but the government's still saying tomorrow night. So let's see what happens in the vote. Everybody's so confident that their best interests might be served by Independents; we'll see what the Independents do.

Like so many of the things that happen in this place, outside of this red chamber and the green chamber, which isn't sitting this week, Australians are getting on with their lives. The trust that Australians showed in electing the Abbott-Turnbull-Morrison Liberal National Party has been destroyed over and over again. Things that they promised, they have not delivered on. Things that they promised they wouldn't do, they have done. Today we can see a government that is not listening to the Australian people. It is completely out of touch. This legislation is just another example of the many failure points that we have seen in this chamber from this government that doesn't listen to experts, that denies scientific information, that doesn't understand new technology and what it can do, that doesn't have sufficient respect for the Australian people to provide adequate information and even the decency of a letter. None of us got a letter to say, 'You're going to have your privacy invaded and you're going to have a record whether you like it or not'. None of us got that letter. They didn't think they needed to do it. That's why this amendment and Labor's amendments should be supported here in this chamber today.

11:55 am

Photo of Jenny McAllisterJenny McAllister (NSW, Australian Labor Party, Shadow Assistant Minister for Families and Communities) Share this | | Hansard source

I rise also to place on record my concerns about the My Health Records Amendment (Strengthening Privacy) Bill 2018 and to do so in the context of my broader concern about the government's approach to digital transformation generally. I will start with the bill. This is an incredibly important policy reform. Digital health records provide the opportunity for huge personal and community benefit by providing better information to clinicians and patients about their own medical history. But unfortunately the implementation of this concept has been badly bungled and the government seems unwilling to listen to the concerns of the community. Labor has called on the government to delay the opt-out deadline for the My Health Record, but the government continually refuses to meet that request. The Senate has voted overwhelmingly in support of a motion calling to delay the implementation of the My Health Record, but the government refuses to listen.

As I said, it is a project that potentially offers huge benefit. In fact, it was initiated under the last Labor government. But the implementation has fallen woefully short of what's required for such a substantial transformation to the way that health record-keeping works. The key failure has been the decision to shift from an opt-in system to an opt-out system. Labor's approach was to say that people could opt in. Reasonable people can debate whether an opt-in or opt-out system would work better, but if you are going to choose to opt out it requires a very different approach to communicating about the scheme. By shifting from Labor's original opt-in system to an opt-out system, the government has placed the entire project at risk. The Senate has expressed its concerns about the implementation of this scheme—and, frankly, so have the Australian people. The government has not implemented the necessary legislative reforms to secure these arrangements in a way that is satisfactory for the Australian people, and it has not communicated the benefits of the My Health Record to the Australian people. As a consequence, people do not understand the privacy protections that are available to them and do not have confidence in the adequacy of these protections. There is enormous distrust in the system. That's why we've called for the 12-month extension. It's actually a reasonable solution. It's a solution that a smart government would pick up because it would provide the opportunity to fix this mess. It would provide an opportunity to legislate for appropriate privacy protections and to talk about this with the Australian people.

The Privacy Commissioner should be involved in a review to address outstanding concerns about the system settings. In undertaking such a review, the Privacy Commissioner should consider the appropriate balance between utility for clinicians, patients and other carers and the privacy and security of individuals. The Privacy Commissioner, in undertaking such a review, could grapple with the difficulty of ensuring genuinely informed consent. Such a review could make appropriate changes to default access settings, which become necessary once you move to an opt-out model. It would also provide the opportunity to work through the very significant issues for particular cohorts of vulnerable people—I'm thinking here about young people, people aged 14 to 17 and families fleeing domestic violence.

Time would provide so much for making this project work. Time would allow all of these things to be addressed properly and it would allow confidence to be restored. But, stubbornly, the government persists with its present timetable. The opt-out is due to finish this week. Seventeen million Australians will have their records created, and there will not have been adequate consideration of privacy concerns or an adequate response communicated to the Australian public about the concerns that have been expressed by so many. And these questions of confidence are huge. We are moving into a period where technology will play a significantly greater role in the delivery of government services. I'm all for that—in fact, I'm very interested in it because I think it presents an opportunity for government services to be provided at a higher level of quality and with a great deal more accessibility. But you have to proceed in a way that gives confidence. It's a new thing for people to transact business online. It's not always straightforward, and anyone who has tried to navigate some of the existing government systems knows that finding your way through the new world of security arrangements, passwords, different pages and provision of identification is very complicated. It also raises a range of issues—acutely in the case of health—about what information is being provided and who will have access to it. For all those reasons, you need to take the community into your trust.

As a parliament, we need to give confidence to the community that the arrangements we're putting in place meet the very reasonable expectation that the community has that their information is protected. But unfortunately it's hard to get the community to trust when there is such a history of maladministration when it comes to tech projects for this government. Even this year we've seen a litany of problems. The plug was pulled earlier this year on a multimillion-dollar apprenticeship management system that was developed for the Department of Education and Training. The Australian Criminal Intelligence Commission's biometrics project, which was touted as a very significant initiative and overseen by the current digital transformation minister, has also been canned. There have been major problems with this year's NAPLAN tests. Perhaps the worst in this list of disasters: staff have been told to abandon work on the $100 million project to overhaul the child support payment system. Why is this happening? There has been a complete failure over the last five years of this government to invest any political capital whatsoever into overseeing, supporting and championing digital.

These are difficult transformations to make and they require leadership, but there has been a constant churn of ministers. We don't have anyone who has taken leadership and provided sustained leadership over the period of time that the government has been in power. In the case of the Digital Transformation Agency, I think we have now had five CEOs. I think we're up to our fifth CEO with Mr Brugeaud. The last one left after just 16 months. That, in turn, has produced a complete inability to retain staff. This is something that I have been paying attention to. The DTA, in its three years of existence, has seen 340 staff leave, and that was just in an 18-month period from December 2016 to June 2018. The place only has a total workforce of 342 people, so that's a 100 per cent turnover of staff. How can any project be delivered with any consistency, any continuity or any quality when people keep leaving? As my colleague Senator Kitching joked—and it's not really a joke—they must be having a morning tea pretty much once a day, with 342 people leaving. That's a lot of cake! Actually, it's really not a laughing matter; it's a serious problem. It shows up in tech disaster after tech disaster.

The thing I wanted to point to in closing is that these failures are expensive. Presumably, they're frustrating for the personnel who work on them, and, potentially, they're also a very big problem for service delivery and full confidence. Digital transformation presents the most enormous opportunity for government. People expect excellent digital services when they go to the bank and people expect excellent digital services when they engage with their super company. They expect excellent digital services when they go looking for some retail experiences.

I believe in an excellent Public Service. The Australian Public Service should provide excellent services to all Australians—the best services we can possibly provide—and that means going digital. But we can't sort that out until we provide leadership. That means stable leadership at a ministerial level and it means stable executive leadership within the Public Service. Until those things are sorted out, we'll continue to see falling confidence in public services delivered digitally. That's a great shame, because in the area of health, in particular, there is the potential for huge rewards—transformative rewards for patients and significantly greater productivity for clinicians.

If we shouldn't miss out on that—it's a huge opportunity—it requires trust and confidence. We call on the government again to extend the opt-out period, to slow this down and to return to a position where the community can have confidence in the project as described.

12:07 pm

Photo of Nigel ScullionNigel Scullion (NT, Country Liberal Party, Minister for Indigenous Affairs) Share this | | Hansard source

Before I place formally on the record the summing-up speech for the My Health Records Amendment (Strengthening Privacy) Bill 2018, I thought it might be useful to comment on some of the contributions by those opposite in the very short time I've been here listening to them—particularly that from Senator O'Neill. Senator O'Neill actually went into the detail and was speaking to the gallery, almost trying to persuade those there. She asked them the questions: 'Is it within your employer's right to know if you're taking contraceptives? Is it your employer's right to know if you had an eating disorder when you were 12 years old?' Wow! Deb O'Neill is the only one who has asked that question and I don't even know why that question was asked! Well, of course it's not! It has never happened, nor should it ever happen. Any suggestion that it has happened in the past or that the circumstance exists where it could happen in the future is a pretty low blow in this place.

I will go on. Apparently, this is all a complete flight of fancy. We had a Senate inquiry. It had three coalition members, four Labor members and two members of the Greens, and other senators had a participating role. The government has listened very carefully. You'd think, from what Senator O'Neill said, that the only reason the government is making any amendments is because of her and that the only reason the government has invested in the extensive education campaign that you've all been listening to is because it was her idea! Well, thanks, Deb! Perhaps she should have a chat to voters in the electorate of Robertson, who were so impressed with her that they threw her out. That's why she's in the Senate.

We should be beyond all this in this place. This is a serious matter, and there are enough things to talk about without making things up. It's really important that we've had a Senate inquiry into this matter. We've listened carefully, and the government has considered it carefully—

Photo of Helen PolleyHelen Polley (Tasmania, Australian Labor Party, Shadow Assistant Minister to the Leader (Tasmania)) Share this | | Hansard source

You didn't even want a Senate inquiry!

Photo of Nigel ScullionNigel Scullion (NT, Country Liberal Party, Minister for Indigenous Affairs) Share this | | Hansard source

Madam Deputy President, I listened in silence to some pretty controversial contributions from the other side. If you could ask Senator Polley to provide the same respect to the coalition, that would be wonderful.

Photo of Sue LinesSue Lines (WA, Deputy-President) Share this | | Hansard source

Senator Polley, the minister is correct: he is entitled to be heard in silence. Please respect that right. Minister, please continue. Senator Polley?

Photo of Helen PolleyHelen Polley (Tasmania, Australian Labor Party, Shadow Assistant Minister to the Leader (Tasmania)) Share this | | Hansard source

I want to raise a point of order: the minister is failing to advise the chamber correctly that the amendments that have been proposed by the government are a result of the lobbying that was done by stakeholders and the Labor Party, because you overlooked—

Photo of Sue LinesSue Lines (WA, Deputy-President) Share this | | Hansard source

Senator Polley, resume your seat. That is not a point of order; it's a debating point. Minister.

Photo of Nigel ScullionNigel Scullion (NT, Country Liberal Party, Minister for Indigenous Affairs) Share this | | Hansard source

The indications were that we were somehow unwilling to listen to the concerns of the Australian community. Well, today's the day that you can judge us on that. We're here with government amendments that we've considered as part of the committee process, as part of the consultancy with the wider Australian people. I think, in the broad, there's broad agreement that there be amendments. There is concern with some elements—the opt-in/opt-out element. As many of you would be aware, this parliament in this place in 2015 universally supported legislation that supported the opt-out approach.

The purpose of the My Health Record system remains unchanged. It is to help overcome the fragmentation of health information by allowing a person to more easily access their own health information and to make it securely accessible to healthcare providers involved in their care. My Health Record is an important piece of our national health infrastructure, and it is changing the nature of health care in Australia for the better. The benefits of a safe and secure system are significant for all Australians through avoided hospital admissions, fewer adverse drug events, reduced duplication of tests, better coordination of care for people seeing multiple healthcare providers, and better informed treatment decisions. More than six million Australians already experience the benefits, with access to important health information when and where it's needed so that the right treatment can be delivered faster and more safely.

In recent months, concerns have been raised about elements of the My Health Record system, including as part of two Senate inquiries. We've listened, and this bill, as I indicated earlier, addresses those concerns. The bill will strengthen the privacy protections for the My Health Record system to remove any doubt as to how seriously the Australian government takes the security of health information. The protections enshrined in this bill are some of the strongest in the Commonwealth. The key measure proposed by this bill will restrict the circumstances in which My Health Record information can be disclosed. We will apply significantly increased penalties for the misuse of My Health Records and the system. We will require that, if anyone decides to cancel their My Health Record, the system operator destroy all of the health information it holds forever for that person.

We will prohibit the use of My Health Record information for employment or insurance purposes, regardless of where that information is accessed or held. We'll establish the governance for the use of My Health Record information for research and public health purposes and will make it clear that the information will not be available to insurers. We will ensure that if a person has restricted access to their child, or could pose a risk to the child or someone associated with a child, they will not be able to get access to the child's My Health Record. I would like to thank senators for their contribution to the debate on the bill.

Question agreed to.

Bill read a second time.