Mike Freelander (Macarthur, Australian Labor Party) Share this | Hansard source

The member for Goldstein has once again demonstrated why the Liberal Party knows nothing about public health policy. I rise to reiterate my support for the My Health Record system and to support the comments of the member for Ballarat.

As the minister has been quick to point out, the My Health Record was Labor's idea. Unfortunately, we're now in the situation where we have the multiplier effect of incompetence. We have the Liberal and National parties' inability to understand public health policy, as demonstrated time and time again—a perfect example is that, at the beginning of this parliament, they sold off the Australian cancer registry to a private enterprise, and there have still been no positive results—multiplied by this government's incompetence with electronic communication, as demonstrated by the poor NBN results, the robo-debt problem, the poor census results and the Medicare data breaches. Unfortunately, this multiplier effect has done enormous damage to the My Health Record system and to public confidence in it. In my view, we need to go back to square one and redesign the system with basic security at the heart and at the beginning of the system. The fact that the member for Ballarat has referred the legislation to a Senate inquiry is very good, but I would reiterate that we need to make sure that the Australian public has confidence in the system.

A brief period of reflection on the history of the system is warranted. After several years of operation of the scheme in a trial manner, the Abbott government decided that it would move from Labor's opt-in approach to an opt-out model, and that's when the problems began. What it didn't do was enhance the privacy and the data security features of the scheme to reflect its wider reach and increased vulnerabilities of the opt-out model. I'm probably a lot less agitated by privacy issues than are many critics of the government's proposed changes, but I do recognise that moving to an opt-out model introduces a level of quasi-compulsion into the scheme that did not exist in Labor's version. I have discussed this scheme at length with my colleagues, both in and out of the parliament.

Any member of this parliament who has an interest and has had a profession in health care, including the member for Chisholm, the member for Batman, the member for Dobell, the member for Bowman, Senator Di Natale, the member for Herbert and the member for Lyne, knows and supports the transition to electronic health records. It will have enormous benefits for the Australian healthcare system. It has real-world benefits already. For example, in my own field of paediatrics, complex—often genetic—disorders associated with multi-organ dysfunction can be benefited enormously by having a record of these rare disorders and the deficits that they can cause. One condition that springs to mind is something called velo-cardio-facial syndrome, which is a specific genetic disorder associated with multi-organ dysfunction, thyroid dysfunction, parathyroid dysfunction, congenital heart disease, intellectual disability, epilepsy and other organ systems, often very complex. Parents often don't completely understand the complexity of the disorder. When visiting doctors and hospital emergency departments, having a simple way of communicating the information about their child's disorder would be of enormous benefit.

Another example is in medication tracing for people who have substance abuse difficulties. It would be very, very helpful if we had electronic records and real-time monitoring of prescriptions. There would be much less repetition of pathology results and imaging techniques. I don't know how many times I've seen patients who've come along and said, 'I had a blood test a month ago', or three weeks ago, and you say: 'Where was it done? What pathology?' They don't know, and that often leads to repetition of results. This would stop if we had adequate electronic health records. Genetic disorders associated with complex difficulties and abnormalities that can be important to prescription of different medications would be on the electronic health record and would be of enormous benefit. Lastly, there would be a huge benefit in population based research using electronic health records that were de-identified—so, enormous real-world benefits of this scheme.

It should have been clear to the minister and to his advisers, however, that moving from an opt-in to an opt-out system might create some disquiet. But digital health records accessible from anywhere in Australia with access and content controlled by the health consumer are clearly a massive plus for patients, health providers and taxpayers. Unsurprisingly, despite the brewing controversy and continued in-principle support for the scheme, this was reaffirmed at the 3 August meeting of the Council of Australian Governments health ministers in Alice Springs. At that meeting health ministers, including those representing the Labor states and the two territories, unanimously reaffirmed their support for a national opt-out approach to the My Health Record. Jurisdictions noted clinical advice about the benefits of the My Health Record and expressed their strong support for My Health Record to support patients' health. Ministers acknowledged at that time some concerns in the community and noted that 'actions proposed to provide community confidence, including strengthening privacy and security and providing better education about My Health Record', was appropriate. My Health Record is almost unanimously supported by the medical profession, provided that we can get the security settings right. About six million Australians had a digital health record at the time this bill was introduced, and 13,000 health providers have participated in the scheme. The bill itself is about further guaranteeing the strength of health records and the privacy of those who choose to participate in the scheme.

Unfortunately, public confidence in the scheme has been shaken by a lack of education, a lack of support for medical professionals and for hospitals, both public and private, and a lack of support for consumers themselves. Public confidence has virtually been destroyed. We need to know that information that has been compulsorily collected under My Health Record cannot be accessed by not only law enforcement agencies without subpoena or judicial review but other agencies. In fact, my belief is that the question, 'Can we view your My Health Record?' which some employers or some insurance companies want to ask, should not be allowed to be asked, and provision should be made for that, otherwise people will lose confidence in the ability of the My Health Record to store their information securely and privately.

We must also require the My Health Record system to permanently delete from the relevant database any health information about a healthcare recipient who has cancelled their My Health Record. That is, if they've opted out of the system, they need to be guaranteed that that information will be permanently deleted. There must be an option for them to reconnect in the future if they want to, but that should be up to the consumer. What really is at issue is the way in which this government has singularly failed to reassure the Australian public and healthcare providers that the data held by healthcare providers won't be used for purposes outside the scope of the original scheme, which was to improve access to a patient's healthcare information for their benefit and no-one else's. You don't have to take Labor's or my word on that. The one thing that the member for Goldstein did say was that security needed to be improved.

The parliamentary process has the ability to restore some of the public's faith in the My Health Record that has been lost by the government's complete incompetence and bumbling. Regrettably, that's also now been put at risk because the government seems so hell-bent on rushing to debate on this bill. It seems less concerned with getting things right than it does with clearing the build-up of political barnacles and impedimenta it has acquired for itself over its five long and poorly productive years in office. The bill was presented to this House on 22 August and, on account of the elevated level of public disquiet—similar to what had happened with the NBN, the census and robo-debt—it was referred to the Senate Community Affairs Committee on 23 August. We know that submissions have been sought and that it's scheduled to report on 8 October. Why couldn't we wait until we get the Senate report? As of today, the Community Affairs Committee has not even begun its deliberations on the bill. I expect both the Senate Scrutiny of Bills Committee and the Parliamentary Joint Committee on Human Rights will want to examine the bills as well and will do so with their usual speed and expedition. So, to make a simple point, we really should not be having this debate now. We should be waiting until the relevant committees have discharged their respective duties and reported back to the parliament. None of that should take long. Given the vital importance of reinforcing public trust on this issue, we would be best advised to leave this debate until the mid-October settings. By then, even if we have not had time to digest the Community Affairs Committee's report, we will at least have had the opportunity to look over the submissions put to it by interested parties, community groups and the medical profession.

The government, unfortunately, didn't do its homework. It didn't take the public into its confidence and has not taken the medical profession into its confidence, and the government's decision to move from Labor's opt-in model to the opt-out model has been a very dangerous thing to do. It has now given a force of compulsion to joining, and I think that's something the government will regret. In fact, I think they should leave the opt-out time open ended, at least until the parliament has had proper time to scrutinise the Senate committee's report. The health benefits of the My Health Record outcomes are so substantial that the government should be keen to get as many health consumers as possible on board. The community concerns are by no means baseless. Some will recall the ABC 7.30 report on the significant number of data breaches by the big banks. We've already heard about Medicare data breaches, and this should raise awareness of the importance of keeping the data safe. The government has had a number of tactical withdrawals on this, again because of their poor homework and their lack of understanding of health care.

There are huge benefits from the My Health Record. I refer the parliament to the July episode of my favourite ABC show the Health Report, hosted by Norman Swan. In addition to the benefits I mentioned earlier, there are other benefits, such as those listed by Professor Louisa Jorm, the director of the Centre for Big Data Research in Health at the University of New South Wales. These include the reduction of waste, the reduction of over-prescription of medications, the overuse of scans, the overuse of pathology and keeping better quality records. The My Health Record, I'm sure, will be of huge benefit to the Australian healthcare system, but that we need to get it right from the very beginning. We need to reassure people, we need to spend much more time educating both the health professions and the general public about the benefits of the healthcare record, and we need to provide reassurance about the safety of data.

People living in rural and regional Australia, especially, want to know how their data is going to be better used. On the Health Report on Monday, 6 August there was an interview of rural GP Dr Ewen McPhee. Like Dr Swan and most of the medical profession, Dr McPhee said, 'I'm a My Health Report fan and will be staying in and not opting out. Australia has been a world leader in the linkage of medical records.' To quote Professor Jorm:

I think we're actually one of the leaders in the use of routinely-collected administrative health data. Not so much for this type of study however, much more so for areas like pharmaco-epidemiology, studies of the outcomes of use of medications, for health services and health systems research, because there's been a strong tradition in Australia of health data linkage. We have been a leader. We need to be moving awfully fast now though, to make sure that we remain in that position.

That position being a leader in public health care around the world.

We need to continue with our electronic health record progress, like many other countries already have, such as Norway, the Netherlands, the United Kingdom, New Zealand, Germany, parts of the USA, France, Canada and Switzerland. Australia has led in health care and this will be another major leader in the provision of health care for all Australians. I'm a strong believer in the My Health Record system. We must get it right from the beginning. I'm hopeful that we can do this. I await with interest the Senate committee's report. In my own practice I will, I'm sure, see huge benefits from keeping electronic health records and the connection between my patients, myself, the local hospital and other providers of health care in the community. But we must get it right first. I think this should be bipartisan, without question. Unfortunately, the government has made a complete mess of the rollout of the My Health Record and I urge them to do better. Indeed, I will support them in their efforts to make it better.

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