Senate debates

Wednesday, 14 November 2018


My Health Records Amendment (Strengthening Privacy) Bill 2018; In Committee

12:14 pm

Photo of Helen PolleyHelen Polley (Tasmania, Australian Labor Party, Shadow Assistant Minister to the Leader (Tasmania)) Share this | | Hansard source

by leave—I move opposition amendments (1) and (2) on sheet 8556:

(1) Clause 3, page 2 (after line 11), at the end of the clause, add:

Note: The provisions of the My Health Records (National Application) Rules2017 amended or inserted by this Act, and any other provisions of those rules, may be amended or repealed by rules made under section 109 of the My Health Records Act 2012 (see subsection 13(5) of the Legislation Act 2003).

(2) Schedule 1, page 9 (after line 12), at the end of the Schedule, add:

My Health Records (National Application) Rules 2017

18 Paragraph 6 ( 3 ) (b)

  Omit "4 months", substitute "16 months".

Labor's view is that 12 months is needed to amend the legislation and to undertake and implement a Privacy Commissioner review of concerns that can't be fixed by legislation. The very open default access setting and the automatic uploading of two years of Medicare PBS data communicate these additional protections to all Australians to rebuild the trust and confidence in My Health Record. Of course, any extension is an improvement on what the government was offering this morning, but it is imperative that we get this right.

12:15 pm

Photo of Richard Di NataleRichard Di Natale (Victoria, Australian Greens) Share this | | Hansard source

The Australian Greens will be supporting these amendments. We need to be really clear about what's happening here, and this is a highly technical area and it's confusing a lot of people. The bottom line is that, without these amendments, the opt-out period closes tomorrow. What that means is that every Australian who does not take an active step to opt out will have a medical record created for them. What that means, as Senator Polley has just indicated, is that a whole lot of PBS and MBS data will be uploaded and, from that point on, medical information will be recorded in the My Health Record. For many Australians, that's happening without their knowledge. We asked, through the Senate inquiry, about the number of people who were aware of My Health Record being created for them, and a very significant proportion of Australians—off the top of my head, close to 40 per cent of Australians—had no knowledge that a record was going to be created for them. That's a very serious issue when you consider the change that's taking place here.

Again, let's try to bring a bit of bipartisanship or tripartisanship to this debate. We all agree that there is a need to try to ensure that My Health Record proceeds. But it has to be done carefully. It has to be done in a way that acknowledges that there have been some major stumbles along the way, and that has undermined public confidence. What we're suggesting here is that we give another year for people to understand a little bit more about the system, where any further problems that are identified are acknowledged and dealt with before everybody has a medical record created. Let's not forget that we were given assurances in the lead-up to these government amendments that nothing needed to be done. We were given assurances that, for example, law enforcement officials couldn't access medical records without a warrant, and then we found that that's not actually the case.

So it's a prudent approach, a cautious approach—indeed, some might say it's a conservative approach—to extend the opt-out period for another year in order for us to ensure that people understand what's happening and can implement the appropriate privacy settings that they feel comfortable with rather than the default creation, particularly given that this legislation won't have even passed both houses of parliament and a new record will have been created. We can't say with absolute certainty that the changes that the government acknowledges need to happen will indeed pass both houses of parliament. Yet we're being told that this should occur tomorrow, that the opt-out period should end. We don't think it's prudent, and we think it potentially undermines people's confidence in what is a very important reform but one that should be proceeded with with caution and where we have an opportunity to identify any further issues that might arise over the next year.

Again, we will be supporting these amendments, and we think the government should think long and hard about whether it wants to press ahead and potentially undermine what's a very important change in Australian health care.

12:19 pm

Photo of Nigel ScullionNigel Scullion (NT, Country Liberal Party, Minister for Indigenous Affairs) Share this | | Hansard source

We won't be supporting the amendment. I commend the last speaker, the leader of the Greens. At least the multipartisan approach is the right approach to this, not some of the approaches we have in this place. There have been concerns that, by delaying this 12 months, the process of the opt-in and then the cancellation will leave somebody high and dry. Let's just deal with that element of it. Whatever date you pick—let's say it's in a year's time—there is going to have to be a translation from where you can opt out physically and how a record is created. Just for clarity: up until tomorrow, there will be an opt-out process. There has been an opt-out process for four months. The opt-out process, as I indicated, had unanimous support here in 2015. I'm not saying the circumstances were identical, but that was the case. After whatever time on Thursday it is that you can no longer opt out, you can still cancel. Between that date and whatever date the finalisation of the records is, which is about mid-December, the fact that you have cancelled means that no record would be created. No record would be created until that date. So even if you haven't opted out and there is a record created, at any time after that absolute moment that you have a record created you can cancel and the record will be completely expunged. That's just for clarity around this transformation. I think people should rightly have concern about what happens during this period: 'Can we opt out or opt in?' There's an opt-out period. After that opt-out period, there is a period between tomorrow and mid-December under which there has to be a reconciliation of records and the record is created. At any time, if you say, 'I wish to cancel my record,' no record would be created. If it's post that date and you cancel your record, that record could would be cancelled and expunged. That's just for clarity.

There have been some issues around the privacy settings. This is being considered concurrently. I take the point made by the leader of the Greens: we need to ensure that we don't pass part of this legislation and still not have the privacy provisions providing that protection. That's why we are considering those matters concurrently. We believe that these privacy settings are the right settings. The Privacy Commissioner oversees the Digital Health Agency. It's also his role specifically now, as Privacy Commissioner, to oversee those processes. We think there has been sufficient work done not to delay for a 12-month period, and we won't be supporting the amendment.

12:23 pm

Photo of Richard Di NataleRichard Di Natale (Victoria, Australian Greens) Share this | | Hansard source

We understand that, from tomorrow, not everyone is going to have their record created. It won't happen automatically. There will be a period of time over which those records will be created. It might take a month or two. But that's not the point. Again, I will put my own personal view on this very clearly. I have worked as a medical practitioner and I understand the benefits of coordinating this information in a way that you can access people's medication record so that you do not prescribe a medication where you might have a drug interaction and cause a complication. I understand all of that and come at it from the perspective of wanting this to work. My concern—and it's a really serious concern—is that, having seen this rollout over a period of months, there have been a range of very significant problems associated with the rollout. We've had conflicting information. We're here trying to address a number of the concerns that were raised in the Senate inquiry process because these issues have been identified.

When I talk to my colleagues in the medical community, many of them have chosen to opt out. When you've getting doctors choosing to opt out, that says something to me—not to mention to the many members of the Australian community who know about this and are concerned enough to opt out. The fact that so many records are anticipated to be created is more a function of people not knowing the deadlines and understanding that this process is underway.

My concern is we're at a point that has the potential to derail this. We may end up with no health record if we proceed in the way that we are. We have a year to roll out this reform with a thorough and exhaustive education campaign. People need to understand the settings they have control over and be given the information they need to adjust those settings, rather than simply ending up with a whole lot of records created by default. People who haven't been following this closely—and it is a very technical debate—could find they have a record created that they don't want created. They could find themselves in a situation with complexities, that can't be anticipated, emerging as a result of the rush to have everybody on an electronic health record by default.

I accept your point that not everyone will have a record created from tomorrow and that it may be a month or two away, and that people will have the opportunity to go in and delete their record. It will be a permanent deletion, thanks to an amendment we proposed that the government has adopted. But that's likely to be after the fact, after something's occurred that has created a problem for someone, and will, potentially, undermine confidence in the system. That's what we need to avoid if this reform is to be a success. I just think it's prudent. That's why we will support this amendment.

The CHAIR: The question is that amendments (1) and (2) on sheet 8556 moved together, by leave, by Senator Polley be agreed to.

12:34 pm

Photo of Pauline HansonPauline Hanson (Queensland, Pauline Hanson's One Nation Party) Share this | | Hansard source

by leave—I move amendments (1) and (2) on sheet 8575 together:

(1) Clause 3, page 2 (after line 11), at the end of the clause, add:

Note: The provisions of the My Health Records (National Application) Rules2017 amended or inserted by this Act, and any other provisions of those rules, may be amended or repealed by rules made under section 109 of the My Health Records Act 2012 (see subsection 13(5) of the Legislation Act 2003).

(2) Schedule 1, page 9 (after line 12), at the end of the Schedule, add:

My Health Records (National Application) Rules 2017

18 Paragraph 6 ( 3 ) (b)

Repeal the paragraph, substitute:

(b) the period is the period beginning on the day on which this Part commences and ending on 31 January 2019.

These amendments extend the time in which people can actually opt out of My Health Record—to end on 31 January 2019. A lot of people feel that they haven't had enough information with regards to the My Health Record, and the government was going to have the op-out period close tomorrow. These amendments give the public more time to understand My Health Record and what it means to them, which I think is very important. Allowing this extra time, until 31 January, will give the public a better understanding of it. My understanding now is that the computer system to opt out has crashed, so it's not fair on the public unless we give them an extension of time.

I also think it's very important that the people know what My Health Record means to them. There's been a lot of fear about privacy—that people will access their records. My understanding is that a person would have total control of their record at all times. Although One Nation is putting forward an extension of the opt-out period until 31 January next year, people can opt out of the My Health Record system at any time after that. The public are not committed to stay in this; they can opt out at any time. It is not retrospective and cannot capture historical information unless uploaded by an individual or by an individual's own healthcare provider at their request. The individual will also be able to log onto their own record at any time and see who has accessed that record. They can nominate who cannot access it and they can request the destruction of their record at any time. I believe that the penalties associated with this—if anyone does disclose anyone else's health record—include a fine for an individual of $63,000 and up to five years imprisonment or, for a corporation, $315,000. If it is a civil offence, it will be a $315,000 fine for an individual and over $1½ million for a corporation.

My Health Record is going to be very good, and, to put on the record, I'm not going to opt out of it; I'm going to be part of it. It's going to be very good for the Australian people, because a lot of people now travel around. There are the grey nomads travelling around the country, and their records can be accessed by hospitals and doctors if they need to know what their health situation is. In general, it's going to be very good for the public. So I hope that these amendments do get support from this house to allow the extension of time so that the public are better informed about it and can understand what it means to them. I hope my amendments to extend it out to 31 January 2019 are supported by this house.

12:38 pm

Photo of Helen PolleyHelen Polley (Tasmania, Australian Labor Party, Shadow Assistant Minister to the Leader (Tasmania)) Share this | | Hansard source

I would just like to confirm that Labor will be supporting these amendments, even though I moved the amendment for a 12-month period earlier. We do feel that 12 months is the preferred length of time to manage trust and security issues and so that the Australian people fully understand. In light of the fact that our amendment was not supported, we will be supporting these amendments because any extension of time is very valuable for the Australian community.

12:39 pm

Photo of Derryn HinchDerryn Hinch (Victoria, Derryn Hinch's Justice Party) Share this | | Hansard source

Obviously I voted for the 12-month extension with the ALP and the Greens, but I will be voting for Senator Hanson's extension because anything's better than nothing. I think it gives people an extra eight, nine, 10 weeks to opt out. I've opted in, and I support the My Health Records Amendment (Strengthening Privacy) Bill—I guess my health records are public anyway! On this one, I will be voting for it. It's a good idea to push it back to the end of January, and I hope it gets the support of all the house.

Photo of Cory BernardiCory Bernardi (SA, Australian Conservatives) Share this | | Hansard source

I put on the record that groupthink is not endemic in this place. I'm opposed to extending this. I think the Australian people have had plenty of time to opt out and get their house in order and that extending it for another week, two weeks or two months is not going to make any difference to those people who haven't bothered to acquaint themselves with the circumstances. I also make the point that, should they wish to do so after My Health Record is implemented, they could delete their record of their own accord. Notwithstanding this, I understand the numbers are certainly there for this. I won't call a division on it, but I want to put on the record that I just don't see these delays as being necessary. But politics is what it is and the numbers will rule.

The TEMPORARY CHAIR: The question is that amendments (1) and (2) on sheet 8575, moved by Senator Hanson, be agreed to.

Question agreed to.

The TEMPORARY CHAIR: The question is that the bill as amended be agreed to. I only heard one voice. Senator Di Natale?

12:41 pm

Photo of Richard Di NataleRichard Di Natale (Victoria, Australian Greens) Share this | | Hansard source

by leave—I move amendments (1) and (2) on sheet 8565:

(1) Schedule 1, page 3 (after line 5), after item 1, insert:

IAA Subsection 6 ( 1 ) (heading)

  Omit "18", substitute "14".

1AB Subsection 6 ( 1 )

  Omit "18", substitute "14".

1AC Subsection 6 ( 2 )

  Omit "18", substitute "14".

1AD Subsection 6 ( 3 )

  Repeal the subsection, substitute:

Healthcare recipients aged between 14 and 17

  (3) For the purposes of this Act, a person is the authorised representative of a healthcare recipient aged between 14 and 17 years if the healthcare recipient, by written notice given to the System Operator in the approved form, nominates the person to be his or her authorised representative.

(2) Schedule 1, page 4 (after line 19), after item 6, insert:

6A After subsection 51 ( 5 )


Suspension while healthcare recipient between 14 and 17

  (5A) The System Operator must, in writing, decide to suspend the registration of a healthcare recipient aged between 14 and 17 years until the healthcare recipient turns 18 if:

  (a) the healthcare recipient does not have an authorised representative; and

  (b) the System Operator is not satisfied that the healthcare recipient wants to manage his or her own My Health Record.

6B Paragraph 53 ( 1 ) (a)

Omit "(4) or (5)", substitute "(4), (5) or (5A)".

6C Paragraph 53 ( 4 ) (a)

Omit "(4) or (5)", substitute "(4), (5) or (5A)".

This is an amendment that says that, if you're aged 14 to 17, you have control over who accesses your medical record. This is a piece of legislation that makes it very clear that the concerns of young people and groups that represent young people—indeed, medical practitioners who treat young people—are respected. Perhaps it might be worthwhile to explain the current situation. If you're a medical practitioner, someone who is aged between 14 and 17 may come to your practice. It might be a young woman seeking medical contraception. It might be a young person with a mental illness and a history of drug use wanting to seek treatment from a medical practitioner. It might be somebody with a sexually transmitted disease. It might be in a clinic that specialises in treating those sorts of issues in young people.

At the moment, should a parent wish to access that information, they will call the doctor and request the medical history of their son or daughter, and the doctor can make a judgement. The doctor can say: 'This person, in my view, is a competent minor. They are able to make this decision for themselves at the age of 17.' If they want to take contraception and they don't want that information to be disclosed to their parent, that is absolutely their right to do that, and the parent doesn't have the right to access that information. Under this change, if automatic right is granted to a parent then that step of actually contacting the doctor and seeking to gain permission to access that information changes significantly and what happens is a parent can simply jump online and look at the medical history of their son or daughter. They can see that they've received treatment for, for example, drug addiction. Their child might be somebody who has been through a detox program. They might be somebody who is receiving contraception or, indeed, treatment for a sexually transmitted disease. You can get that information if you know what you're looking for simply by the PBS record—simply by the drugs that have been prescribed. This is a pretty significant step and it reduces the autonomy of those young people.

One of the consequences of that is that young persons are less likely to want to seek that treatment and to have that conversation with a medical practitioner. It's a very important relationship and it's one where young people should feel that they are able to have confidence that a parent's not going to access that record. This is consistent with recommendation 2 in the Community Affairs References Committee inquiry into the My Health Record system. The College of General Practitioners, in their submission, made a similar request for this change. We've had concerns from, for example, headspace. Jason Trethowan, the CEO, expressed support for these amendments. They have broad support from people who work in this field and we think this is a very important change.

Progress reported.