My Health Records Amendment

18 September 2018

The My Health Records Amendment (Strengthening Privacy) Bill 2018 is a government bill and I'm going to speak in favour of it, unlike many of the members of the government who contributed to this debate earlier.

I want to set out why I think legislation such as this and the underlying scheme are necessary. But before I do that I want to congratulate the member for Gellibrand. There was very little that he just went through that I could disagree with. It was a very learned contribution to a complex debate.

I've got to say that it takes a lot of talent, a very peculiar sort of talent, to turn public opinion against a proposition which saves money and saves lives, but here we are. A proposition which saves money and saves lives has been so monumentally mishandled that we have a wall of public opinion against it, and for that reason I want to set out in my contribution why I believe a personally controlled electronic health record, the My Health Record, is an important scheme that we need to get right.

Why's it necessary? Well, the practice of medicine and the way we interact with our general practitioners has changed a hell of a lot since I was a kid. The idea that you would have a GP for life, a doctor who would operate out of a suburban shopping centre or a suburban practice and who would operate on his or her own with maybe one other doctor operating out of the same rooms, supported ably by a medical receptionist, is the model of medical practice that I grew up with and that my parents grew up with. But it's not the model of medical practice for the vast majority of interactions with general practice today. No longer is it the practice that, if you have an ailment after hours, you call that family doctor, who you've known all your life, and he or she turns up with their brown bag and sits by the bed and consults with you.

What is more likely to happen today is that you have a practice that you visit regularly, with many, many doctors who work in that practice. It is more likely that each time you attend that practice you see a different doctor. In fact, the way that medical practices are run is very different these days as well. They're staffed sometimes by partners of a practice and sometimes by employees. Sometimes they are part-time employees and sometimes full-time employees. Sometimes the doctors have trained overseas, and sometimes they're locally trained. Sometimes, they're a locum. In fact, the further you get from a capital city, the more likely it is that you're going to have a doctor working in a practice who wasn't there the year before. And, if you go to regional Queensland, the overwhelming majority of doctors who are staffing practices are overseas-trained doctors on short-term contracts. So the way we practise medicine is very, very different.

Gone are the days when one-third of the floor space of a medical practice was taken up by manila folders stacked in filing cabinets. More likely is the case that, when you visit a practice, your doctor keeps an electronic record and is not pulling a manila folder out of the compactus. It is also more likely that you'll visit many, many different practices, certainly over the course of your lifetime but often over the course of a couple of years. If you're living in rental accommodation and moving from one suburb to another, it is more likely that you are going to visit the practice which is closest to where you live at that point in time or perhaps closest to where you work. All of this builds up to a picture that shows that your medical records are going to be scattered, if not across a town then perhaps across a state and even, in many instances, across a country. This is not a good way for us to be managing somebody's health care, particularly if they have a chronic health condition or if they are a parent who is attempting to ensure that their child has continuity of care, that their vaccinations up to date, and that all of their records and the child's health care are in order.

It's also worth noting that a model with a transferrable electronic health record that is able to be accessed by a medical practitioner that you are seeing wherever you are at a particular point in time is going to save money. Putting this into perspective, the Medicare budget is tipping over $20 billion per annum. The Pharmaceutical Benefits Scheme budget is tipping over $11 billion per annum. We know that, if we're able to have a transferrable electronic file that can be accessed by a medical practitioner who is treating a patient at a point in time wherever they are, not only are you likely to be saving lives by ensuring that you have access to their historical medical record but also we're going to be saving money because the same pharmaceuticals that might have been prescribed by another doctor are being represcribed, and, in relation to medical imaging, which is an enormously expensive part of the health budget, it will be more likely that we are not reordering the same medical imaging, such as X-rays, CT scans and ultrasounds, that may have been ordered and could have been accessed by another medical practitioner. Pathologyagain, a ballooning cost in the health budgetwill be able to be accessed if it is a part of your electronic health record. This builds up to a picture that shows that a well-constructed, well-controlled, portable, personally controlled electronic health record can save lives and can save money.

That is not to lightly dismiss many of the concerns that were raised by the member for Canberra earlier this morning or the member for Gellibrand in the speech preceding mine. There are valid concerns. I've been contacted by single mums who are victims of domestic violence and who, quite rightly, make the point that they don't want to endanger their lives or their children's lives by their medical record being a back door to finding out where they may now be residing. These issues do need to be dealt with, and that's why Labor welcomes the amendments in this bill which would put more rigour into the requirements about who can lawfully access your personal eHealth record. We welcome the requirements in this bill that would mean that a law enforcement agency or any other government agency would need to get a court order to access an electronic health record. We also welcome the fact that under this billsomething that wasn't thought out properly before the government changed its policy settings on thisa person who opts out has their My Health Record permanently deleted, not able to be accessed. These are sensible changes to the legislationsensible new arrangements.

But I'm keen to ensure that as we debate these amendmentsand we rightly criticise the health minister and the government for mucking them up; we should criticise the health minister and the government for mucking this upwe don't throw out the baby with the bathwater. We should be having a debate about how we implement such a scheme. As the member for Gellibrand pointed out, a lot of the issues that we are grappling with, about access to personal data, are not unique to the health space. There are issues that we are confronting across all areas of our life. We should be having a debate about who can legally access our records. We should be having a precursor debate about who owns the record and what rights the owner of that record has, who they can exclude and who they can include in having access to that data. We should be having debates about how we can adequately protect the legitimate privacy concerns of citizens who have their data stored in a government owned and operated database.

But we should be having some perspective in that debate. I will give a few examples of areas where I call for some perspective. I'm wearing an Apple Watch. About half a million of them were sold in the past 12 months. They are consistently and persistently collecting health datawhen I'm sleeping, when I'm awake, how much I'm moving, where I'm moving, heart rate data and all the rest of it. It is constantly being uploaded through the app to which this watch is connected. I'm reliably informedin fact, there are papers available about the use to which that data is being putthat this is a private database, not a government owned database and not a government controlled database. In fact, there are real questions about the capacity of domestic law to be regulating the way a bunch of that data is being used in other jurisdictions.

These are issues that we should be grappling with. But as the wearing and the use of smart watches and smart devices is increasingly collecting more and more data, including personal health data, from us, we need to put some of this stuff in perspective. Over 85 per cent of Medicare consultations in the past 12 months were bulk-billed consultations. Closer to 95 per cent of those consultations involved some form of government payment. All that information was collected and stored on a Medicare database. The difference is that the individual who owns that data does not have access to it. Let me put it another way: the individual to whom that data is referring does not have access to it.

These are real issues, worthy of debate, but we need to put them in perspective. We are, rightly, critical of the government for stuffing this up. Let us not throw the baby out with the bathwater, though. We need proper, rigorous controls and security regimes in place to protect the integrity of the data that is stored, just as we need these controls and protections in place for all the existing data that is stored through Pharmaceutical Benefits Scheme databases, Medicare databases, hospital databases, existing general practice databases and existing pharmacy databases. All this information is being stored currently, often without the knowledge of the individuals to whom it applies.

It's important that we are collecting this data. It's also, I would argue, important that we have better access to it for predictive and medical research purposes. The next big leap forward in life-saving medical technology is not going to be the invention of a new molecule, as important as our pharmaceutical industries are. The next big leap forward is going to be around data and how we use the data for predictive and research purposes to ensure that we can live longer and better lives and that known risks to our health and longevity can be predicted, brought to the attention of an individual and treated appropriately.

This is the next leap forward, so I am deeply concerned that, as we have this debate, we do not get off on the wrong foot. The underlying idea is a very good onethat individuals have a portable health record that they can take with them throughout the course of their lives, from one treating physician to another, and that that information can be appropriately stored and appropriately used. These are important debates, not germane to the health spacethat's the one that's currently before the parliament at the moment. Many of us on the Labor side have been saying for quite some timeI see the member for Chifley here, and the member for Gellibrand has been mentioned in dispatchesthat we need to have a broader debate about how we are storing and using data in this country across all of the touchpoints of government and private sector data collectionwho owns it, who gets access to it, how it's stored, how it's protected and how it's used for the betterment of the individual to whom it applies and of the society as a whole.

My concern, I say in concluding, is that we do not let an acknowledged stuff-up by the government distract us from the course that is necessary, that we have these debates and that we land at a point where we can ensure that individuals, government and society as a whole can benefit from the next big revolution, which is unleashing data for our mutual benefit.