My Health Record

I'm very lucky that, for the last 25 years or so, I've had the same GP, so my health record is already held in a single place. He can tell me which year it was I started having flu shots and when my pap smear is due. If everyone had that situation and, touch wood, good health, we wouldn't even be worrying about a digital health record. But people do change doctors, they have complex conditions, they move through different hospitals and they don't stay in the one place. Anyone with a chronic illness knows what it's like to get to a new doctor and have to give your medical history. It's pretty awful if it's a chronic or episodic mental illness. There are often so many parts of that story to tell.

So, in theory, I think a digital record of your medical interactions and results is a fabulous idea. But why is it that I have so little confidence in the reality of it as we see it today? And it's not just me. Dozens of my constituents have written to me about their concerns and their frustrations—their frustrations particularly in trying to cancel their My Health Record. While July this year marked the launch of the three-month opt-out period for the My Health Record in my part of the world, the Nepean Blue Mountains region, which covers the electorate of Macquarie, most people already had a My Health Record. So, most people in the Blue Mountains and Hawkesbury were given a My Health Record as part of the 2016 opt-out trial. Unfortunately, very few people realised that they had one. They found out only when they went to opt out of the current system. And what they found was that they couldn't. It was a painful process to identify that they had to actually cancel their record, not opt out.

I'm going to let you hear how Elizabeth described her experience. She says, 'I called the help line as instructed, and the first call centre person took all the information about me and my children multiple times and then pressed "validate" to finalise and said it was taking a long time and put me on hold. Fifty minutes later the second person took only my Medicare number and then told me I could not opt out, as a record had already been created for me.' And as she wrote this email to me she said, 'I am on hold for the third call centre person to find out why two people saw different information results, and they have completely forgotten I'm even here. It's been an hour and a half.'

Now, she wasn't alone. I had many similar emails and calls for help to my office. Once we identified that you had to cancel a record, people were also furious that they actually couldn't completely get rid of the data already there, that it could only be archived. This amendment fixes that problem, and we welcome it. But it doesn't go far enough. We don't believe that any of the changes do enough to allay the community's fears about privacy and security. There are many examples, but this bill does nothing to address the concerns that the My Health Record may pose a risk to women from domestic violence with their children and that the children's health records, linked to both parents, can be used to track visits to pharmacies or doctors. So, that is one area that needs to be addressed.

Workers have also raised concerns that doctors who perform pre-employment or workers compensation assessments may pass on health information to employers and that employers could use that information to discriminate against the workers—for instance, on the basis of pre-existing medical conditions. That's another area that, understandably, unions are very concerned about and union members—in fact, all workers all who know they will have to go through a medical assessment. We remain of the view that the government should suspend the opt-out period until these and so many other issues can be addressed. We are supporting this bill in the House, but the fact that it is going to an inquiry in the Senate will hopefully provide some reassurances for people. That will really test whether the bill adequately responds to the privacy and security concerns and, I would expect, develop amendments around them. While we will support this, we have grave concerns about it.

I think it was summed up really effectively by another email I had, from Paul Bailey, from Winmalee, who wrote to me in detail about the range of concerns he has. Like me, he agrees in principle with a system that can be accessed anywhere, but he worries about the security. He specified his concerns about mental health and about women's issues, like information about abortions being accessible. He also highlights the privacy issue. He says that 'nearly every IT person has said that privacy safeguards are nowhere near as safe as the government states'. He wrote that he is no computer expert but that he would take their advice. He says that, after the debacle of the census last year and the so-called robo-debt problem, which showed that some welfare recipients owed thousands of dollars in debt when in fact they didn't, he has no faith in any government's computing system. He had three attempts to opt out and was put in a loop saying he was unsuccessful but wasn't told why. This is a classic example of the sorts of experiences people have had—and those on the other side wonder why there is so little confidence in this. This government has had a shocker of a record on IT security and privacy. They have botched every system they have tried to roll out, including the NBN, the NDIS, their shocker of a census and the robo-debt mess, and now they've stuffed up My Health Record.

I'm assuming a lot of the consequences we're talking about were not intended by the government. I point to another one that has been raised—that is, parental access to information about their teenage children. Unless children know that they can de-link their parents, their information is going to be accessible. You want your teenage children to seek help for mental health issues or around sexual health. If they know that their parents are going to get an alert every time that happens or be able to see those records, you are putting into the system a disincentive for young people seeking medical help. I'm sure that isn't the consequence this government intended, but that's what we're being warned is going to happen. Unfortunately these unintended consequences seriously undermine what might have been a useful system.

I also mention the amendment to this bill, which is absolutely a step in the right direction, to ensure that a court order or a consumer's express consent is required in order to disclose information from their My Health Record to law enforcement agencies or other government bodies. We absolutely support that one. The government argues that it's already the policy, but legislating for it is a safer bet. It is wise to have a range of conditions under which a court can make such an order, including being able to demonstrate that the disclosure is reasonably necessary and that the requested information is not available from another source.

The amendments being put today are sensible; they simply don't go far enough to restore confidence. It will take a long time for the community to have confidence in this system. While there are huge potential advantages for people to be able to access a record that was created in one state and delivered on in another, which could save someone's life, the real concern is that the government has not done the work needed to put in the safeguards this sort of massive change needs. As a parent I can see huge advantages in the ability for my children to digitally access those records wherever they are; unfortunately I'm not sure they will want to have a My Health Record. They may well make a judgement that the risks are too great. Many people seem to be making that judgement. That in its