LINDA MOTTRAM:
Greg Hunt joins me. Minister, welcome to PM.
GREG HUNT:
Good evening.
LINDA MOTTRAM:
Just on that announcement firstly, the $50 million for the genomic testing, it’s focused on people with late stage rare cancers. Would you consider extending more funding for genomic testing across the range of cancers?
GREG HUNT:
Well in fact we’ve already allocated $500 million for a 10 year national genomics mission and that will cover cancers across a range of conditions that will cover non-cancerous genetic conditions. So spinal muscular atrophy, Fragile X, cystic fibrosis , where we’ve already announced we’ll be doing a test with 20,000 participants who will look at pre-conception screening to tell whether or not there’s a risk of children being born with the particular combinations of genetic outcomes.
So that’s the biggest program for medical research individually that was embarked upon as a Government, and today what we’ve done is added the rare cancers component and that will help 5000 Australians initially with diagnosis of cancers which would otherwise either be unable to be properly treated or for which there was no perfect outcome. Now what we’re looking at is extending that treatment, extending the diagnosis and we met four patients today who were alive because of the trials in this very program.
LINDA MOTTRAM:
I know it’s been widely welcomed, very much welcomed, across the community. Not so much on the My Health Record system, though. We’ve heard the arguments for making health records more accessible but the Prime Minister’s confirmed 20,000 people opted out on the first day. Do you agree that you have not answered Australians’ concerns about the security of their health information that will now be in the hands of the government?
GREG HUNT:
No, I disagree. We have six million Australians in the system that’s been operating for six years so far who are part of the program and that’s operated on the advice of the Cyber Security Centre without a digital breach at all. We have people who are adopting it, we’ve expected an over 90 per cent participation rate, but our trials, including a million people in two significant areas, have had a 98 per cent participation rate.
So the participation rate has been far higher than we’ve expected. And importantly, though, not only is the data secure, but everybody has complete choice whether they participate in the system, whether they prevent any material being uploaded to their personal record, whether they have exclusive access themselves, or whether they share some access with others. So total personal control.
LINDA MOTTRAM:
Okay. This is now an opt-out system, though; that was an opt-in system. It’s a very different beast, isn’t it? It’s one of the issues-
GREG HUNT:
No.
LINDA MOTTRAM:
Well, it’s one of the issues that Paul Shetler, the former head of the Government’s Digital Transformation Office, raised on RN Breakfast this morning and he was being asked about the lack of default security settings:
PAUL SHETLER:
(Excerpt)
I think it’s problematic. So, it was initially designed as an opt-in system and those kind of security settings kind of make sense for an opt-in system, because you kind of know what the system’s going to be used for, you know why you’re going to be in it, you’ve chosen to do it, and so therefore you want to make this data available. When it becomes an opt-out system and you find out all your data’s on there and, oh, by the way, it’s all being shared, no I don’t. I think that’s one of the flaws. So, when I say this thing has been- the roll out of this has been significantly flawed.
LINDA MOTTRAM:
Significantly flawed, Minister. That’s a harsh criticism from a very well-informed individual in this process.
GREG HUNT:
Well, in fact as I said we’ve had six million Australians sign up. It’s been running for six years, there’s been no issue over six million accounts and over that course of six years with the data, the access. I think that’s one of the most significant trials that any nation has had. So it’s been designed with all of the major medical groups, it has the support of the medical groups and it’s also been designed with consumer groups and with the support of all of the states and on a bipartisan basis. It was originally passed into being in 2012 by the previous government, but it’s had bipartisan support.
But most significantly, medical design, consumer input right throughout and that’s why it’s been highly successful so far and that’s why it’s now evolved to the next stage with, as I say, each state and all of the major medical groups supporting it.
And everybody has complete control as to whether to participate. It’s not just for three months, they can choose at any time, at any point that they may wish to opt-out.
LINDA MOTTRAM:
Okay, can I just stop you there because one of the issues that’s been raised, and you would’ve heard perhaps a little bit of our package before, where we have sex workers, we have people in the transgender community, people living with HIV raising significant concerns about issues of stigma, discrimination, potential criminality in some cases, if their information is not secure. They’re saying they don’t trust the system, Minister. Are you saying that you will not take any notice of that call for you from them to do something more?
GREG HUNT:
Well I think the first thing is that I respect the views of everybody, which is why it was designed so as people have total control, nobody has to be part of the system. Secondly, they can have exclusive control so as only they can have it or they can prevent any documents, any particular documents being uploaded. So I think one of the important things is to continue the process of explaining the total personal control that people have. I would say and correct the fact that people can be criminalised through this process, that’s incorrect. The Digital Health Agency …
LINDA MOTTRAM:
Well, if they’re sex workers in a state where sex work is still criminalised, there is the potential for that isn’t there?
GREG HUNT:
No that’s incorrect. The Digital Health Agency has again reaffirmed today that material, which is the case for every medical record in the country, can only be accessed with a court order. And that applies to the situation of every medical record which is currently available. So, the security of the online is far greater than the fact that all of these existing medical records already exist. Whether it’s within a GP’s practice, in a hospital system, within a pharmacy. So simply giving people the choice if they wish to have that together.
LINDA MOTTRAM:
Minister, okay, we’re just running short.
GREG HUNT:
And so they can control exactly who has access to it.
LINDA MOTTRAM:
We’re just running short of time, Minister. If hospitals are allowed to override patient privacy controls, which it seems they are.
GREG HUNT:
No, that’s incorrect.
LINDA MOTTRAM:
If once documents are downloaded or accessed by the hospital.
GREG HUNT:
Access to that’s incorrect, with great respect. And it would be a criminal offence unless there is in the case of a major emergency for that to be done.
LINDA MOTTRAM:
But Minister, don’t people, don’t individuals have to then reset their security controls, delivering a level of complexity and perhaps a lack of knowledge that might leave people exposed.
GREG HUNT:
No, the presumption that there would be the ability to override is incorrect other than in a deep, profound medical emergency.
LINDA MOTTRAM:
Regardless of everything that’s…
GREG HUNT:
One of the thing’s that’s happened is there’s been a number of statements which have been incorrect.
I would gently correct those, the statement about access by law enforcement bodies, incorrect. The statement about the ability for anybody to access it, incorrect. The statement about the ability to override the system, incorrect.
LINDA MOTTRAM:
But Minister, just on that: the problem is that people simply have been telling us all week across the ABC’s various platforms that they just don’t trust the system. If you have a system that is not trusted regardless of you verbal assurances, isn’t it going to be the case you’ll have to reconsider October as the deadline for the opt-in system to start?
GREG HUNT:
Oh well, people can opt-out …
LINDA MOTTRAM:
Sorry, opt-out.
GREG HUNT:
Not just between now and October. People can opt-out at any time. And that’s actually one of the points that I think it’s very important make, that at any time people can opt-out so…
LINDA MOTTRAM:
And that means their existing records, though, remain with the Government, don’t they? After you opt-out whatever’s already there remains with the Government.
GREG HUNT:
Well, there’s absolutely no access to anybody and it’s the same, I think it’s important to understand that all of these records already exist. They exist within an OCT’s clinic, or in a hospital, or in a pharmacy, and so it’s simply giving people their own access …
LINDA MOTTRAM:
But Paul Shetler Minister. Okay, you’ve already made that point. You’ve made that point. With respect Minister, Paul Shetler- Minister, you’ve made that point. Paul Shelter, the former head of the Government’s Digital Transformation Office says he doesn’t trust the system. He believes it’s flawed and he would not sign up if he were an Australian. Isn’t that a condemnation?
GREG HUNT:
It’s a matter for each Australian and I think the important thing is…
LINDA MOTTRAM:
So you reject his criticisms?
GREG HUNT:
Look, everybody’s entitled to their own views.
LINDA MOTTRAM:
He’s an expert, Minister.
GREG HUNT:
Everybody is entitled to make their own decisions. Actually the strongest experts are of course the medical authorities who’ve helped co-design.
LINDA MOTTRAM:
No, no, no, the technological expert, Minister. He’s a technological expert. He says the system can’t be trusted.
GREG HUNT:
Well, we also have the extraordinary people, whether it’s in the Digital Health Agency, whether it’s through the Rural Australian College of General Practitioners in each of the states and territories who have helped develop this system, which is why when you look at 6 million people, 6 years.
On the latest advice today, no data breaches. That’s actually a very, very significant outcome, but more than that, why is this happening? So that every person is reinvested with the right to their own material. That’s a very important presumption, that we all have the right to our own materials and that nobody should be able to take that right away from us, we might choose not to exercise it.
But secondly, this is about (inaudible) saving lives. About ensuring that people with allergies to penicillin are not prescribed it in circumstances and so ultimately this would save many lives, improve medical outcomes and it’s a fundamental opportunity for each Australian to choose how they manage their own health.
LINDA MOTTRAM:
And I’m sure a lot of people do see potential benefits but those criticisms are still out there. We’ll continue the debate, I’m sure. Greg Hunt, thank you very much for joining us on PM this evening.