Justine Elliot (Richmond, Australian Labor Party) Share this | Hansard source

Thank you, Mr Deputy Speaker. I was just highlighting some of the rollouts that have been botched by this government. A lot of it has not been implemented properly, so there certainly is a history of it, and My Health Record is another one of those botched rollouts.

When it comes to IT failures we also remember the massive failure when it came to the census, and the robodebt debacle. We've now also seen the latest IT disaster in My Health Record. So, it's important to look at it in the context of this government's record. Of course, it comes on top of this government's harsh cuts to health and hospitals. We've seen $700 million in cuts to hospitals across the nation—their cuts to Medicare. Those cuts particularly hurt regional areas.

Whilst it's been stated that we do agree to this bill, we have many strong concerns about the government's implementation of the My Health Record System. The fact is that nearly one million Australians have opted out of My Health Record following the government's botched rollout, proving that public trust in this important reform has been severely damaged. Indeed, under Labor questioning at a Senate committee, the Australian Digital Health Agency finally admitted that over 900,000 people have now opted out—900,000. And with two months to go in the opt-out period, that number is likely to rise to well over one million people. So, it's really clear how badly this rollout has undermined public support for a system that could deliver enormous benefits. Instead, we have massive problems, symptomatic of the government's massive problems.

It's because of these problems and concerns that Labor referred My Health Record to the Senate for an inquiry. We still firmly believe that the opt-out rollout should be suspended until all these concerns are fully addressed and a new, comprehensive public information campaign is launched. That's the proper way to approach this. The government promised such a campaign six weeks ago, but so far we've seen absolutely no trace of it. The government's responses have not been sufficient. The one-month extension of the opt-out period that the government has introduced is simply not good enough. This reform should not go any further until public trust has been restored, and the only way to do that is for the Senate to do its job and make sure that we actually get this legislation right. The government must do everything in its power to listen to the community concerns and to minimise the risk and security concerns—listen to the health experts, listen to the many people who've raised these issues.

As we've said, Labor supports a national digital health record, and we support e-health. We established a personally controlled electronic health record, because we knew that such personally controlled e-health records could really improve coordination between GPs, specialists, hospitals and pharmacies and could cut down on duplication errors in diagnosis, prescriptions and treatments. So, it is a really important and vital healthcare reform. It's especially beneficial for older people, who often have very complex health conditions and need to consult a variety of doctors and specialists. So, there is a great capacity and a great potential in e-health.

From my perspective in my electorate, I've had so many queries from locals who are concerned about the botched implementation. People are actually very distressed about the potential access to their health record. Again, particularly our seniors are very worried about their sensitive personal medical data. And what's the security? What are the provisions around it? These people are highly distressed, and I've been approached by many of them. They're really concerned about where their personal, private medical information will end up and why this government has not put sufficient safeguards in place.

So, the government's response is very disappointing. Indeed, this bungling also has a major impact for people in rural and regional Australia as well. And where is the National Party in speaking about this? Nowhere, when it comes to this. The reason it's going to have a big impact upon rural and regional areas is that they're more likely to need portability of their medical records when they travel to major cities for treatments that are unavailable where they live, so they really need them in the regions. Again, that's been raised in my area. People in my area often have to travel to the Gold Coast or Brisbane or Sydney. But those in rural and very rural areas can have very lengthy travel to get medical treatment, so they really need an effective and proper e-health system that they can rely on.

An e-health record implemented properly by a competent and functioning government can in fact deliver real and important healthcare reforms. It's for these reasons that Labor began delivering the e-health record system when we were last in government. It's important to note that when we were in government our system was opt-in, and we thought that was the right approach. Anyone who participated in e-health had to give informed consent and was fully informed as to what the e-health record was and what it involved. This government decided to change this to an opt-out system. But, in doing so, they never properly explained why they were doing it and never attempted to educate the public about this approach. They should have done that across a whole range of different media, but they didn't. The government has essentially refused to communicate with Australians about the risks and benefits of the My Health Record and what exactly the opt-out system means in practice.

The opt-out model is a very big change from Labor's opt-in system. It moves the system away from one of informed consent. In 2015, the government took the decision to move to the presumed consent model and provide a period in which people could choose to opt out of the system altogether. It's a very significant change in the healthcare relationship. To do that effectively really requires proper and consistent explanation and advertising to the Australian public of just how the system works, and none of that has happened. It is this failure to communicate this change properly and thoroughly that has fuelled a lot of the privacy and security concerns that Australians quite rightly have. This government's bungling now of the rollout of the opt-out period undermines public trust in this very important reform and the potential benefits it could bring.

This bill responds to some of the public anger about the scheme by making some of the changes that Labor welcomes, including requiring law enforcement and other government agencies to got a court order to enable access to the records. Firstly, this bill amends the act to require a court order or a patient's express consent in order to disclose health information from their My Health Record to law enforcement agencies or other government bodies. It is very important that this particular change to policy be enshrined in this legislation. The bill sets out a range of conditions under which a judicial officer may make such an order, including that the disclosure is reasonably necessary and that the requested information is not available from any other source. The bill exempts the Auditor-General, the Ombudsman and the Information Commissioner from the requirement for a court order.

Secondly, this bill amends the act to require the permanent deletion of health information for all consumers who opt out of 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 patient's death. A major issue that had been raised was: what exactly was happening after deleting the health information of people who opted out of the health record? So this bill does implement some good changes, but it was only following the massive public outcry at the start of the opt-out period for My Health Record in mid-July that the government actually agreed to make these two particular changes to improve privacy protections.

But we on this side of the House don't believe these changes go far enough, and they actually will not do enough to ease the community concerns about privacy and security. For example, a really important point is that this bill does nothing to address concerns that the My Health Record may indeed risk the safety of women who are fleeing from domestic violence situations or fleeing from abusive partners, and, indeed, it doesn't do anything to help children needing privacy from non-custodial parents. Many advocates have raised the particular concern that inappropriate access to My Health Records could actually facilitate family violence. For example, ex-partners or non-custodial parents could conceivably use the record to track the location and treatment of people. That's because the default settings give access to a child's My Health Record to both parents. In fact, they may even allow a non-custodial parent to create a record for a child that is no longer in their care. This is a major privacy and security issue. For example, if a woman and her children are fleeing an ex-partner, that partner could potentially track their location by viewing the doctors and pharmacies that they visit and, therefore, could quite easily narrow down the location of that ex-partner and children fleeing from domestic violence. This is a major concern that the government absolutely has to look at to ensure the security and privacy of the people involved.

We're also very concerned when it comes to workers' privacy. I know many people on this side have raised this concern. Indeed, I commend the unions who've rightly also raised issues. They are concerned that doctors who perform pre-employment or workers compensation assessments may potentially pass health information to employers, and those employers could then use this information to discriminate against employees—for example, on the basis of pre-existing medical conditions. This is obviously very unfair, and, quite rightly, many people have been encouraged to opt out because of the concerns that they have about that information being passed on. It really is an absolute breach of a person's security and of their sensitive medical data.

We need to see action on those particular points. As we've said, Labor remains of the view that the government should suspend the opt-out period until these and other issues can be effectively addressed. I have raised concerns about the impact of the government's bungling of the e-health record, particularly the impact on people in regional and rural Australia. I again say that we need to get this right for those people. When you're living in the regions and travelling long distances it can be vital to have access to a healthcare system like this. It is disappointing that, as always, the National Party are silent when it comes to the issues that are damaging people in rural and regional Australia. The impacts on the regions are very important, particularly considering this government's cuts to health and hospitals over the years. This government has failed rural and regional Australia on many fronts, particularly when it comes to health and hospitals.

As I've said many times, National Party choices hurt, especially when it comes to the lack of advocacy for an effective e-health record system for the regions. When we look at the health circumstances of regional, rural and remote Australia, we see that there are always considerably higher levels of chronic disease and a shortage of health professionals, on top of the government's cuts. It is even more important to have effective health systems in place so that people from the country can get access to services. That's why it's important to get e-health right for them. Whilst the National Party may not be advocating to improve e-health records, Labor does so consistently on this side of the House. We are the party of the country and will always advocate for better health systems for them, because we know how they need that in place.

The changes brought forward in this bill are necessary and important, but they are not enough. We need to see this Senate inquiry process as an opportunity for many Australians, particularly medical professionals, to have their say so we can work effectively towards fixing the existing problems in e-health. We need further protections for privacy and security in both the legislation and the policy, and we need a government committed to communicating with all Australians about the benefits and risks of My Health Record so that people can make an informed choice as to how they participate in the e-health system.

That particular method of communication can be through a whole range of media over a long period of time. People are very keen to understand and learn more about the benefits of e-health and what it means for them and their families. I think particularly older Australians—who, as I've said, often have very complex conditions that require seeing a number of medical professionals—were very keen to have this system in place, but now there is so much scepticism and hesitation because of the bungling by this government particularly around security and privacy that it has a lot to do in order to restore faith and trust so that people will again look at e-health and perhaps see the benefits that could be brought with it.

To do that we need a competent and functioning government—not the muppet show we have at the moment—that can put a proper e-health system in place so people have the trust that, when they access a number of health professionals, they won't be terrified as to where their health records will end up, but given the bungling of this government, a lot of work has to be done because of the shambles it is in. We have to find a way through this because e-health provides a great way to move into the future of healthcare systems. It will take a long time and a lot of commitment as to communication and the way this government speaks to people about the benefits of the e-health system, which can be done only if we see all the privacy and security provisions improved so we can have an effective and functioning e-health and My Health Record system for people to access.

See this speech in context