Andrew Laming (Bowman, Liberal Party) Share this | Hansard source

I follow the member for Fisher, who speaks on behalf of one of the most advanced hospitals in Queensland, the Sunshine Coast Hospital, in the middle of his electorate, down to the bayside of Brisbane, where I represent the seat of Bowman and where there is extremely strong support for the medical health record. It's been an incredibly long journey. It goes back I think to the late 1990s, when the major medical groups recognised the obvious importance of using initially computerised records and then the internet to store incredibly important medical data.

I guess people forget that for a long time we've been ceding our personal health information to government-funded professionals. Medicare-funded doctors hold paper records, and they're easily accessible to the entire staff of a medical practice, which presents significant security risks in and of itself. We tend to discount that, and we now make this proposal that, like every other developed country, we need to move to a situation where we can absolutely store these records in perpetuity with patient consent so that the key and appropriate people can access that information. And of course as we've moved forward there's been this primary health record development, a central holding of records. Obviously Apple has moved in parallel to use their health app platform on their devices to allow complete patient control of health information that they choose to place in the device. That's actually a counter approach being pushed by Apple, which I think is completely reasonable. The ability to opt in to having other parties sharing access to your health information is a very important power.

What these two have in common is an incredible increase in the amount of patients' central control over their own health information. Having worked in medicine since 1989, I can remember that at every turn there have been squabbles and debates as beleaguered patients have attempted just to get their own health records from their GPs. Simply changing from one GP to another was, for many, a very stressful process. We forget that patients in many cases had lost complete control of their own health information because of some very unfortunate event whereby the relationship with the medical practice that they'd been attending had broken down. So, we tend to almost forget the difficulties of the status quo when proposing this new approach.

The most disappointing element of the debate today will probably be that, once again, the once great Labor Party and party of health reform has increasingly become paralysed in its Medicare based defence. It's very hard to get the Labor Party, once the great party of social reform, to be in any way imaginative anymore. To see them nickel-and-diming these important legislative amendments today is pretty disappointing. I would have expected a Labor Party opposition health spokesperson to come in here today and say, 'This could have been tidied up much better, but let's face it: where we have to head as a developed economy is some safe repository, with the best technology available protecting that information from the obvious misuse that we are fearful of—that is, unauthorised access by work cover and private insurers.' We all share those concerns. I think we are all united in knowing that the Australian Digital Health Agency is absolutely taking the best advice from other countries that have tried these elements and have built in the best we can do. That's all you can ask of a government. To see the series of barely sublethal, critical comments from the opposition is pretty disappointing for anyone who's worked in the health sector. And I'm delighted there is finally a doctor on the other side who maintains his registration and there is a pharmacist on the other side. So slowly the Labor Party is running out of excuses for not having a coherent approach to something as simple as an electronic health record.

Those who have worked in the sector for many years will appreciate there are literally billions of dollars of health costs—not millions or hundreds of dollars but billions—through poor communication within an advanced medical system. I don't have to explain that we've got the four platforms—the four tiers of Medicare, the health state system, the federal government running Medicare and then councils getting involved in vaccination. There are providers all over the place. There is health data being collected in schools and in childcare centres. Every one of these is a basic case, an almost unarguable case, for doing the very best we can. We don't begrudge an opposition keeping a government honest, but we need to remember that 10 years ago the shoe was on the other foot. There was an apt opt-in arrangement and the then Labor government couldn't get any engagement. No matter how many people they popped in shopping centres handing out free apples, they couldn't get enough people to go onto this electronic health record. That is why we have reached the point today of an opt-out arrangement, and I hope a bit later to explain that we have done that very efficiently.

As I walk around my electorate, the first thing I notice is that most people don't care overly about their health information. They don't know a great deal about it. They presume it's tucked away safely somewhere. To be honest, in my electorate, just over two per cent of people have opted out. That's a tiny proportion of a community. So let's be entirely honest here that, as we move into this increasingly online era, younger Australians don't hold these completely obsessive privacy concerns. They take a far more balanced approach to information. Young people are increasingly asking: 'What's in it for me? What's the net balance? I'm quite happy to throw heaps of personal information online as long as there's something coming back for me.'

It's hard to imagine a more compelling case than when you are unconscious and in an emergency situation, with well-meaning health professionals around you who need to know more than just guessing your age, getting your blood pressure and then looking round and asking, 'Does anyone know this person?' We need to get to a point where it can be quite rapid, that once you have identified an individual very quickly there are a series of gates that allow health professionals and emergency workers to access basic information. It's complete common sense. It's hard to imagine how many incredible tragedies could be avoided by the provision of basic information in this way. Having worked in a public hospital, I understand that at many times staff wish they could just access GP information. You don't even need to begin to pick out just how much money is spent on repeat investigations because one health provider over there did one but the information is not online. It may even be online but not available to the hospital and so the tests are all done again. The cost of this is hundreds of millions of dollars.

In any other case, this would be an overwhelming argument for moving ahead as the technology allows us to. The system has been well invested in. We have learnt the lessons from the UK where huge amounts of money was invested—in many cases, wrongly—by engaging large information providers to put together these systems which ultimately failed and the UK government had to back out of. We are the beneficiary, almost leapfrogging places like Europe, because we have waited to get a system that works and have applied it.

Today is about disclosure, deletion and delay. In delaying the opt-out period until November 15 we are giving Australians even more time not to feel rushed about that decision to opt out. What does opt out mean? Opt-out means you can say, 'I do not want to have the empty electronic shell record become a reality next year.' After the department and the Digital Health Agency have worked through all of those opt-out requests and have ensured that those individuals will not be entering the system then they will create these empty shells upon which information can be loaded. After that period, Mr Deputy Speaker Andrews—welcome to the chamber—either the patient or the primary carer of that individual, who already has all the data, can place it into that electronic repository in that file. The information is already held by that same individual; the shell is simply populated by that carer, in this case a family physician. That's a fairly routine process that will happen as of next year.

The decision around deletion was one of genuine concern, and I'm glad to see that this legislation is addressing it. A number of people generally, even since 2012, have found that somehow they've ended up with a health record through a well-meaning relative or a consultation with a doctor they can no longer remember, and they hold great reservations and don't want that record to exist. All of their health information now, as a result of this legislation, can be completely wiped from that record. We note there is still archival law that requires this information to be held until 30 years after death or for 130 years. These are long periods, but let's be honest: this information was going to be sitting somewhere in a file, with way more government funded employees having potential access to paper records than do in an electronic system. The last point to note is that anyone attempting to access the system leaves a fingerprint allowing them to be digitally identified and for action to be taken, so there are many strengths to having this digital system.

The last thing this legislation does, which has been mentioned by a number of speakers before, is to up the requirements around disclosure of information rather than leaving it to the Digital Health Agency—whom I do not want to impugn; they've done an incredible job, since 2012, of not releasing a single scintilla of health information to anyone. That's not bad—it's a Bradman-like record on consistency—but people aren't satisfied with that; they want to go to the next step and have an absolute guarantee that no information in the future will ever be released without a court order or a warrant. That's a genuine, judicially assessed process to determine that this information is absolutely in the public interest before it's released.

At this point the Labor Party are dancing right around the margins of the debate. Having been the party with the bravery to bring an electronic health record concept forward—and here we are finishing the job without taking cheap shots—they are raising concerns that at some point in the future a minister may be able to delegate an authority to change the way in which information is disclosed. These requirements exist in almost every form of legislation that comes through this place regarding the holding of important information. Quite clearly we have the need for basic, serious examples of where there are concerns with how things have been structured. I don't think that has been put articulately by anyone who is opposing this legislation. People have these vague, indirect concerns about a little bit of information possibly being in a record that is still around in 30 years time, but they completely forget the status quo is that our health information, like our personal information, has been spread generously around the public domain often without citizens even realising.

The stakes around health information are enormous. We have moved now beyond the era of blockbuster drugs into increasingly tailored, incredibly expensive cures that work only in identified individuals. That's going to mean we will increasingly be reliant on higher forms of evidence derived from better designed trials that have specific subpopulations of people with particular genetic backgrounds. Some cancer treatments work on this kind of genotype and not on that kind, and nobody knows any of that until we've done these kinds of tests. Most Australians, I'm absolutely confident, would willingly share their data for the purposes of developing a better cure, but that simply cannot happen without an electronic health record.

We've had debates over the weekend on the tragic circumstances around the Defqon.1 music festival, where there were two tragic fatalities due to drug overdoses and another 17 people were treated for collapses and another 700 for unrelated reasons. That is a real disaster for those festival organisers. While we're all waiting on the toxicology results, and we pass our condolences on to the distraught families in this incredibly tough time for them, ultimately we need to ask the question about the immediate availability of health information in those circumstances. I can only imagine that many of those first responders would have been emergency and ambulance trained, and there would have been doctors on site. I can say very confidently that they would have been highly trained and ready for some of the toughest circumstances, but the lack of information would be incredibly difficult for them. There are young people with diabetes or other chronic diseases, all of which can be confused with drug overdoses. Then we have this difficult issue that they could have collapsed from the drug itself, the MDMA, or they could have collapsed from impurities. There is this great debate about whether drug testing should be allowed in these festivals. Increasingly, I think people are stepping away from the precipice and saying we need the evidence that drug testing is going to make a difference, particularly in the absence of informed consent inside a festival, where many people are intoxicated or using drugs at the time that they're bringing them in for testing. What people genuinely want in these circumstances is adequate information. The electronic health record offers us that opportunity.

Few would dispute that Australia has among the top handful of health systems in the world, with the most highly trained health professionals, so we need to make sure that we have a purpose-built, fit-to-last electronic health record that can do the job for this great nation. The Medicare system has a GP centred approach. It's one that we're extremely proud of and will defend. We defend the team based arrangements that exist for the highest need Australians, because the average Australian visits a doctor around seven times a year and accesses way more Medicare services than that. When that occurs, Australians who wish to will have all of that information on a medical health record.

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