Sharon Claydon (Newcastle, Australian Labor Party) Share this | Hansard source

I also rise today to contribute to the debate on the My Health Records Amendment (Strengthening Privacy) Bill 2018 and am very happy to support amendments moved by the member for Ballarat in doing so. I am a huge supporter of electronic health records in principle. Done properly they have the potential to revolutionise health care, as we've heard throughout this debate. Labor established electronic health records when in government. We know the benefits they can deliver. They can dramatically reduce errors, improve diagnoses and save the health system billions. If, heaven forbid, you find yourself in an accident and arrive in an emergency department in whatever part of Australia, who would disagree with the notion that your receiving ED could log on and have ready access to all the important information regarding your health?

There are many situations where this could be incredibly advantageous, but like many Australians I am concerned about data security and the conditions under which third parties, especially commercial operators, can access private medical data and information. This government has given me absolutely zero reason to have any confidence in their capacity to do this properly. They have completely bungled the rollout to date and have utterly failed to explain the process or principles of My Health Record to the Australian people. For many the first they heard about it was when they learned that they'd signed up without their knowledge and that their most personal medical information was now stored on a central repository. Add this to the government's appalling track record on data and IT security and you have real cause for concern. From the robo-debt debacle to the botched census and the failed NBN, this government has an embarrassing legacy of failed projects and dodgy patch-up jobs.

For these and many other reasons I made the decision last month to opt out of the program until the government gets it right, and I'm not the only one; people across the country also have a lack of confidence in this government's capacity to deliver this program and are voting with their feet. It was revealed this week that nearly a million Australians have now actively removed themselves from the system, and we still have two months to go in the opt-out period. This should have been a great program that streamlined the health system and made it more reliable, but in the hands of this government a great project with a lot of potential has been utterly bungled.

The public backlash has been swift. The bill before us today is a mad scramble to fix some of the problems that the government should have foreseen and fixed months ago. It goes some way towards responding to the community anger by creating the need for a court order for government agencies to access medical information and by deleting records once someone opts out of the system.

While Labor welcomes these changes, we do not think they go far enough. They are necessary but not sufficient. There are a number of protections that Labor believes are still necessary to deliver adequate protections and restore community confidence. For example, nothing in the bill today will address concerns about the safety of women and children fleeing violent partners. There is a very real concern that instead of helping people the information within the health record could be used to facilitate domestic violence by giving former partners, or non-custodial parents, access to treatment information, which could be then used to identify where their ex-partner and children are living. This is utterly unacceptable and it must be fixed as a matter of urgency. Similarly, workers have told us that they're worried that if they have had pre-employment checks or a workers' compensation assessment by a doctor then this information may be passed on to their employer. Nothing in the bill before us today would stop employers using this information to discriminate against employees on the basis of pre-existing medical conditions.

But we won't hold this bill up. We understand that if the My Health Record system is to be successful it must secure widespread buy-in, and this bill is a reasonable starting point for building trust, limited as it is. The first change proposed in the bill would mean that any law enforcement agencies or other government bodies would not be able to secure access to content within a My Health Record unless they either got a court order or were given express consent of the record owner.

The bill also sets out strict conditions that must be met in order to secure a court order. This is an important change that addresses broad concerns about how the data might be shared between agencies, as they do with so much other information. While the government argues that this protection is already contained in the policies of the Australian Digital Health Agency, it is difficult to determine whether this will be adequate in practice. Given the dire state of public opinion about this rollout, it's very sensible to install this extra safeguard with the legislation itself, as explicit protections on how the data can be accessed will help to ease many people's minds.

The second major change made in the bill is to ensure that once somebody opts out of the My Health Record system their record is permanently deleted. Currently, the information is locked down but retained for 30 years after the person's death. Again, this is an important change that will serve to ease a lot of disquiet in the community about those records living on in contravention of the direct and stated wish of the individual. As I mentioned earlier, Labor thinks there are some more dire problems that remain with the program, but we can see that these initial steps are indeed necessary to help close some security gap concerns people have raised and go some way towards helping to start to rebuild trust in the system.

In August, the Senate referred the bill to the Community Affairs Legislation Committee for inquiry. But, unfortunately, this inquiry will be limited to the provisions within the bill and not the bigger issues surrounding the program, of which there are many. This is why Labor has established a second inquiry to examine the issues that fall outside of the direct scope of the bill before us today. This will be a root and branch inquiry of the entire system: its rules, its regulations and its risks. It will be looking at the much broader issues, such as the government's decision to establish an opt-out system rather than the opt-in system that the former Labor government had set-up.

As we have seen, this has been nothing short of disastrous so far. There was virtually no attempt to explain it or educate people on how the system would work. People, understandably, became very suspicious when they learnt they had already signed up for something that they knew nothing about, especially when they started to learn about the potential privacy loopholes.

The inquiry will also consider the privacy and security settings to determine whether they are in fact adequate. In this regard, it will look closely at who will be able to access personal health data, with particular attention being paid to the conditions under which private companies can see this sensitive information. It will examine how women fleeing domestic violence can be protected and how employees can be guaranteed that having a My Health Record will not be able to lead to discriminatory treatment in the workplace. The government has said there are no problems here, but the risk that that isn't the case is simply too high.

As I mentioned earlier, Labor are a big supporter of electronic health record programs, in principle. Labor want to see My Health Record succeed. Open and honest inquiries are the best means of identifying and fixing issues before they become a serious problem. So it was very disappointing that the government referred to it as a 'stunt', given the importance of the subject matter and how much we stand to lose if we get it wrong. This inquiry's no stunt. It's a very real attempt to make a half-baked bill the best it can be. The committee will thoroughly interrogate these risks through the inquiry process and determine what is needed to be done to ensure the safety and privacy of every My Health Record user. Labor will look closely at the findings of the inquiry, which is due to report on 8 October. We will then decide on our final position and identify any further amendments that are needed to strengthen privacy protections and boost our confidence in the system.

In summary, in the hands of a competent government, e-health records have the potential to be a game changer for our health systems. They can reduce the stakes, improve outcomes and, indeed, save billions. Labor, I repeat, want the My Health Record to work—but this government has done such an utter botched job of it so far. It took an opt-in system which had been functioning effectively for years and turned it into a public outrage almost overnight. It tried to impose an opt-out model which presumed consent without giving thought to what this might mean for privacy or data security and then it was surprised when there was a public backlash. It's astonishing that the government should be surprised by the backlash. The government failed to consult, it failed to communicate and it failed to correct when it became abundantly clear what a debacle the rollout was turning into. But, most importantly, it failed to adequately consider the privacy and security of millions of Australian men, women and children when it made decisions around the treatment of their most personal medical data. This legislation fixes some very specific issues with the My Health Record rollout, but it doesn't go near fixing the damage the government has done to public confidence.

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