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31 Jan 2019

Transcript:   AMA Chair of the Ethics and Medico-Legal Committee, Dr Chris Moy, ABC Radio Melbourne, Breakfast with Jacinta Parsons and Sami Shah, Thursday, 31 January 2019

Subject:   My Health Record


JACINTA PARSONS:   Have you opted out of My Health? Or have you decided, through consideration, that you’re going to stick with it? Or, probably like the large population, you’ve woken up this morning, it’s the very last day to opt out and you’ve gone “oh, hang on, what is this all about? I have no idea”. So look, we’re going to run through some of the stuff that the My Health Record is all about, some of the criticisms that were put to it early in the year that changed the date of your opt-out period and extended it to give you a bit of time to look into it – and have you actually spent the time doing that? Or have you just left it ‘til today?

We’re joined by Dr Chris Moy. He’s a clinical reference lead for the Australian Digital Health Agency, Federal Chair of the Australian Medical Association Ethics Committee. Good morning to you.

CHRIS MOY:   Good morning.

JACINTA PARSONS:   As we’ve said, it’s the very last day to opt out. There were many things that were brought up in the last session when we were going to be- the last date, I think it was in January, it was extended. Mainly these things focused on privacy. Can you give us a rundown on some of the issues that were raised, and whether we’ve had them addressed in the time?

CHRIS MOY:   Look, there was a concern about one of the clauses in the legislation being not quite aligned with the actual policy of the Agency in terms of release of information. So that has clearly been addressed now. The privacy standard which goes to the My Health Record is actually - well, we’ve looked at it, from the AMA’s point of view – it’s quite ridiculously high now. It’s actually much higher than the Privacy Act, and certainly at a level – it’s almost like in a parallel universe now.

And one needs to remember now that the My Health Record contains only copies of documents that are already out there. They’re already in the general practice, they are already in the hospital. So that- so that it’s so hard to get at now that if, you know, say, police wanted to do a court order, they’ve actually- much easier going through to try get it from the general practice or the hospital rather than getting through My Health Record. So that was probably one of the main ones.

The other concern was really with regards to, you know look, this opt-out bit. Now, I think that probably the most reassuring I’m going to say today is that we’re really going to be, from now on, actually going to be the permanent opt-out period anyway. So look, even if it doesn’t happen today- if you don’t manage to get there, there’s going to be this thing called permanent deletion, which is what the AMA asked for and the Government have, to their credit, followed through on it. It basically means that at any stage from now on, if you decide that you don’t want a My Health Record, it’s permanently deleted; whereas previously, like most Government records, you have to keep them for a period of time, for years onwards.

No, that doesn’t happen now. This is, say if you decide in six months’ time you don’t want one, you can permanently delete it and there will be nothing left behind.

SAMI SHAH:   With the opt-out- the details a lot of people have been arguing over. One thing that we all found surprising, even though the discussions have been going on for so long- the details have been shared with us, is that it doesn’t mean, you know, starting tomorrow all your previous information will now be accessible through a file. It means a file with your name will just be created. Is that right?

CHRIS MOY:   Yes, that’s right. And look, first up, it won’t be created tomorrow. It will be created in a month’s time because basically, they’re going to spend a month’s time making sure- reconciling everything to make sure that everything is matched up properly. This is huge technology, a whole country’s worth of data. On the first day, there won’t actually be any information in there because it’s basically a shell. And to be frank, it needed to be that way because people were concerned about the fact that suddenly all their records of, you know, 30 years back is something they have no control over it.

So really, what has to happen is you get clean records at the beginning, at day one, which is the month from tomorrow, that’s right. And then what will happen then is that after that, a shell record is created, and nothing goes in there until the first time a health document goes in there. So, either a doctor puts one of their documents, like a medical summary, or a discharge summary goes in, or say a pathology lab puts a result in. Then, after that, two years of Medicare and Pharmaceutical Benefits data will flow in there and then after that, it starts building up. And probably the one I’ll remember just to tell you, pathology is probably the big one because that’s the one doctors are really hankering for at this moment in time. At the moment, we have this problem, that when a new patient comes to us and they’ve had tests done and they’ve had it done from several labs, we can’t keep track of that. We’d love to get them, and you’ll be able to see them for the first time, actually.

JACINTA PARSONS:   So, I want to ask you about how we can see them, but before we get to that, I want to find out again- because I know there’s a huge amount of anxiety about the privacy thing. Of course, you’ve mentioned here that there can be now permanent deletion of your My Health Record at any time…

CHRIS MOY:   [Talks over] Sure.

JACINTA PARSONS:   …but we do know that even the use of Facebook - we talked about it earlier this week - that data that finds its way on to the net, it’s actually not as easy as we always think to remove it. How confident can we be that when we’ve decided to take it off, it’s actually definitely gone?

CHRIS MOY:   I can say to you, as a GP, that it’s as secure as it can be. It’s certainly far higher [indistinct]. I mean really, in terms of- I know people are focusing very much on this privacy but you know, at the moment the same people are using online banking and Facebook as it is. And you just need to use it with the same level of balance as you would with those things.

And what I’d say to you is, the balance for people which hasn’t been articulated through this whole thing is, if one day you’re in a hospital with your parents or your son or daughter, and you’re in a hospital area, you know, in an emergency department, and your head’s in a spin because your daughter or your son or your mother or father are unconscious, and the doctor is barking at you about what their allergies and medications are, because they need to give them something life-saving, and you can’t tell them.

I suppose what I’d say to you is, you need to think about the balance in terms of what you think might be the risk and, at the end of the day, the security and privacy are things we hear about in the paper. But the bottom line is you need to balance that risk versus the risk of being in that situation in an emergency department and having no control. And I think that’s something we need to articulate out there, that this is about improving health and safety, but you just need to balance it out with what you think the risk is.

JACINTA PARSONS:   And, just very quickly, because we’re heading towards the news -how do we access our own My Health Record? Is it through the myGov Portal?

CHRIS MOY:   Yes, it is. Through the myGov Portal and also, it is possible through certain, very limited number of apps but only on a read-only form. You can’t upload data to those things and that’s just to make it easier, you know, the best thing that can happen is if you turn up in a doctor’s surgery and maybe there’s a very small number that don’t have access now, but you can actually show them your medical history, which is really good.

JACINTA PARSONS:   Thank you very much for that. Really appreciate your perspective on the last day that we can opt out of our My Health. Although, it’s not really- but your record will be created, Dr Chris Moy was saying, within a month from now if you haven’t opted out today.

31 January 2019

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Published: 31 Jan 2019