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Community Affairs References Committee
17/09/2018
My Health Record system

GAULD, Mr Trevor, National Policy Officer, Electrical Trades Union of Australia

HAYES, Mr Gerard, National Secretary, Health Services Union

McCALLUM, Mr Lance, National Campaign Coordinator, Australian Council of Trade Unions

SVENDSEN, Ms Leigh, Senior National Industrial Officer, Health Services Union

WATTS, Mr Christopher, Social Policy Advisor, Australian Council of Trade Unions

[17:40]

CHAIR: Welcome. Can I double-check you've all been given information on parliamentary privilege and the protection of witnesses and evidence?

Mr Hayes : Yes.

Mr Gauld : Yes.

Mr McCallum : Yes.

Ms Svendsen : Yes.

Mr Watts : Yes.

CHAIR: Thank you, everyone, for coming. I'd like to invite each of your unions to make an opening statement and then we'll ask lots of questions.

Mr Watts : Thanks very much for the opportunity to participate in this inquiry. As the peak body for Australian workers, the ACTU has approached this issue from the particular position of the impacts that the current opt-out system may have on workers. We have an awareness of the potential clinical benefits of the My Health Record system and the benefits it could have for workers, both directly for workers in the health industry and as patients, but also an equal awareness of the need to ensure the privacy of health records is maintained.

As it currently stands, Australian unions have a deep and abiding concern about the current My Health Record legislation and the impact it will have on the rights of workers to keep their medical information private. While we acknowledge the potential clinical benefits of a centralised health record system, we believe the current formulation leaves open unacceptable privacy gaps. Our concerns, which we went into detail in our submission, can be summarised as follows. We're concerned that the default settings may allow employer nominated doctors, and, by extension, employers, to have access to jobseekers' medical history during pre-employment medical assessments or regular employer sponsored medical examinations or assessments; that employer and insurance company nominated doctors may have access to injured workers' unrelated medical history, such as during independent medical examinations required under the workers compensation laws; and that health information recorded in the My Health Record may be able to be disclosed for secondary use purposes under the control of the governance board, which has not yet been established. We also have concerns about the inadequacies of the Healthcare Identifiers Act 2010 protections, issues around access and disclosure, the lack of effective control of information upload, potential for the commercialisation of patient data, as well as data longevity and genomic data, and opt-out and default privacy settings.

We believe the My Health Record system can bring real benefits to Australians both as patients and workers in the health system. The issues we've outlined in our submission are not intended as arguments against why such a system should be implemented. There's a list of issues to address before any such system could ever be successful and accepted. The recommendations we present in our submission would close the privacy gaps, clarify access rights and give people more control over and confidence in their health records. We hope that these issues can be addressed and that the benefits of the system can be realised without the privacy of Australians being undermined.

Mr Hayes : We echo the views of the ACTU. We certainly think that there is some opportunity for a positive outcome to this program. However, in the first instance, confidence for the community and society needs to be delivered. Certainly our members have indicated to us they've got very serious concerns in relation to privacy and access and what particular groups or agencies would be able to access this information. Our paramedic members are very interested to be able to glean more detail that can actually deliver changes to patients in a timely manner. However, the overarching concern of our members is privacy and access.

Mr Gauld : I don't have a great deal to add to the ACTU's opening remarks. We share their concerns and support their submission. The ETU is not ideologically opposed to the My Health Record concept. The problem is that the current system is deficient, and the proposed legislative changes leave it deficient. Such an important program requires a social licence to operate. It doesn't currently have one, in our view. From our members' perspective—we provided some education to our members through a short video message and gave them the opportunity to ask for additional information about either security settings or how to opt out, and we left it to their discretion to ask for that additional information. We were overwhelmed with responses seeking additional information and, other than two of them, they all wanted information on how to opt-out.

Senator WATT: Thank you all for coming today and for your written submissions as well. I take it all of your organisations, in principle, support an e-health record; it's mainly the concerns around privacy and access that each of you seem to have issues with. Is that pretty right?

Mr McCallum : That's a fair summation. I'd just couch that by saying that as things stand today, in terms of how the system is currently operating, the concerns around privacy issues are outweighing any of the potential clinical benefits.

Senator WATT: Before I ask about that in a bit more detail, have any of your organisations or unions, to your knowledge, had any direct interaction with the Digital Health Agency or the department about the My Health Record?

Mr Gauld : I can speak on that. The ETU did seek meetings with ADHA and did meet with the chief of staff to the CEO and had a number of email exchanges, phone exchanges and a face-to-face meeting. When I was asked to look into this on behalf of our union and make some sort of assessment on the potential impacts, at the time it was very much purely from an employment perspective. Subsequent to that we identified, I guess, some broader issues, but our concern was the capacity for employers or employer-nominated doctors and insurer-nominated doctors getting access to the records. I want to be absolutely clear. We have never said that employers can access My Health Records or insurers can access My Health Records. Our concern is that employer-nominated doctors and insurer-nominated doctors can access it, both pre-employment and during employment. That's where our concerns were.

We took a look at various pieces of legislation that interact with the My Health Record legislation, and it became very apparent to us that the My Health Record system collects the information and it's used for the purpose of providing health care to a registered healthcare recipient in accordance with access control. So we had to find out what all that meant, because it wasn't immediately apparent. It took us to a range of definitions. The My Health Records Act said that health care meant a service within the subsections of the Privacy Act, so we went down that rabbit hole and found out that the Privacy Act's definitions of health care are extraordinarily broad. It's much more than what we thought it might be. It involved issues around assessing, maintaining or improving health. It included diagnosing and it included recording individuals' health for the purposes of assessing, maintaining, improving or managing the individual's health. So you don't even have to be going there with an ailment seeking some assistance to correct that ailment. You simply could be going there to be assessed as to whether or not you are fit or capable of, potentially, performing an employment role.

So that was quite broad. Then, of course, it could only be accessed under the access controls and that's where we found the default settings were, effectively, open slather. We put that proposition, myself at a meeting on 6 July, in Melbourne, that that is our interpretation of the structure of the legislation and how it would operate and Mr [inaudible], the chief of staff to the CEO, confirmed that that is how it would operate. At that meeting he contacted one of their specialists, I think, who might be on their board or part of their executive, a Professor, Meredith—I can't remember her last name, I apologise. Over the phone she confirmed—he provided a case study, similar to the ones that I've provided in our submission, and asked for her clinical experience and expertise to assess whether or not in that circumstance, for an employment related attendance at a medical appointment, whether it could be accessed. She confirmed that whilst she wouldn't normally do that herself in her practice, absolutely, it would be available for her to see if she chose to click on the My Health Record.

Senator WATT: This came up a little bit in the hearing we had last week as well. Some of the witnesses made the point that one of the fundamental problems with this model is that we have now moved to an opt-out choice but that the legislation is still built on assumptions that it would be an opt-in model, and that some of the open access controls that you are talking about might be appropriate when someone has actually opted in and they've made an informed decision to provide that sort of access, but that what's happening here is that they're not. By not opting out, it doesn't necessarily mean they've thought all these things through, and yet the legislation assumes an open access level. Is that something you think is fundamentally wrong with the legislation?

Mr Gauld : Yes. From our perspective, the way that it's constantly couched as a 'choice' is a misdirection. If I'm offered a choice, it means that I have a number of options and I can actually access each of those options. The presumption is that I can reasonably, meaningfully access the options before me. In this case, it's incredibly difficult to navigate. I spent quite a number of days researching this to try and understand how it operated. I understand there's training for the clinicians that are involved in interacting with it, and for Joe Public there's an ad on the bus occasionally—

Senator WATT: I saw one the other day.

Mr Gauld : if you notice it. That's not public education.

Mr McCallum : I'll just add to that very quickly and say that we'd absolutely agree with that analysis. We're somewhat disappointed by the fact that, while this system was reviewed previously in 2015—and we're here in 2018—the gap and the dissonance between the legislation and how the system is being implemented has given rise to these problems.

Senator WATT: Just so I understand the concern around employer nominated doctors—what we're particularly talking about is if someone suffers an injury at work and, as part of a workers compensation claim, they're referred off to an employer nominated doctor, who reviews their situation, makes notes, provides a report back to WorkCover about whether the claim should be made out et cetera, and your concern is that that doctor would have access to someone's My Health Record, would update the My Health Record to reflect that interaction and, in particular, could pass on any of that information to an employer if they chose to do so. Is that exactly the concern?

Mr McCallum : That's one of our concerns, yes. We give some hypothetical case studies in our written submission where we think that pre-existing conditions or medical conditions outside of the employment arrangement might be accessed by insurance company doctors or employers' doctors and therefore impact on compensation that might be due to employees. That is absolutely one of our concerns. Apart from those specific case studies that are in our written submission, the broader issue of the lack of clarity and lack of assurance around how the data might be used in the workplace, let alone the broader privacy concerns, I think points to a large systemic issue with how the system is being implemented.

Ms Svendsen : Can I just add that it is broader than workers comp.

Senator WATT: Can you take us through a couple of the other examples?

Ms Svendsen : The reality is that, in a significant proportion of workplaces, employer pre-employment medicals are growing. Ones that are happening more regularly throughout employment are growing. Without doubt, even though it's not legal, there is discrimination based on certain conditions and diagnoses, and that sort of information would be detrimental to a person's employment potential.

Senator WATT: The Digital Health Agency, when this sort of stuff was put to them, said that access to the My Health Record is limited to the provision of health care. I can't remember which organisation, but one of you has pointed out that the Privacy Act definition of 'health service', on which the My Health Records Act relies, is very broad. Can one of you go into that in a bit more detail?

Mr Gauld : Again, Senator, talking about assessing people's health, maintaining their health, improving their health, diagnosing their health and, just generally, recording observations about a person's health are all covered as providing someone healthcare under the Privacy Act. It really enlivens a really broad set of conditions. It's not just workers comp; certainly the pre-employment space is a real issue. Giving an employer nominated/sponsored/paid-for doctor access to information about unrelated health conditions introduces the issue of prejudice straight away from our perspective. We've got a whole cohort of members who participate in six-monthly and annual medical assessments needed to ascertain their capacity to continue to perform work at a certain level. They're tailored towards health-related conditions associated with risk. Again, unrelated matters can be tied into that. Before you get a job, if you're hurt at work and also whilst maintaining your employment—all of these avenues can be accessed. Quite simply, if the view is that it's not meant for those things, then just write the carve out into the legislative change—it's that simple—and then it removes all doubt.

Senator WATT: On this point about the risk of employer-nominated doctors passing on information to employers, the Digital Health Agency has said that that would be prohibited by subsection 14(2) of the Healthcare Identifiers Act. What is it that makes you worried that that's not sufficient protection

Ms Svendsen : It's happening.

Senator WATT: It's already happening. Is this the point—

Ms Svendsen : The point is that there is clear evidence over time for all of us who've been representing people for any length of time that treating practitioners have breached that information confidentiality previously. That has been by what's been spoken about in an appointment, as opposed to having access to everything that I've forgotten about.

Mr Watts : If I can add to that: even if that weren't occurring, and all practitioners perfectly followed the requirements, it's our understanding that the Healthcare Identifier Act and its protections only apply when the individual healthcare identifier is used to access the information, which would be sufficient if that were the only method of gaining access to someone's My Health Record information. But the portal guide the government produces for clinicians about how to do that indicates that a Medicare number or a Department of Veterans' Affairs number can also be used to access a My Health Record. It's our understanding, and we have advice, that if those numbers were used to access someone's record, and a Medicare number seems to us to be the more likely vector for access, those protections wouldn't apply, which would obviously be hugely concerning, because then you end up in a situation where there is a clear loophole that is fairly easy for a knowledgeable person to use.

Senator WATT: So there are two concerns: one is that the existing protections are being flouted on occasion?

Ms Svendsen : Sometimes, on occasion.

Senator WATT: And the second concern is that there may be other ways for the records to be accessed and passed on without invoking those protections in that act?

Mr Watts : That's correct.

Senator WATT: These instances that you've talked about, where this is already happening, breaching the act with doctors passing information on—

Ms Svendsen : Sometimes it's not intentionally deliberate in the sense of it being malicious; it has just happened.

Senator WATT: Are you aware of any complaints having been made to the relevant authorities on what has happened?

Ms Svendsen : I'm a qualified health practitioner myself. I have been in health for 35 years and with the unions for more than 30. Yes, I'm aware of complaints, but some of those date back over a long period of time, and to times when complaints weren't acted on as well.

Mr Gauld : There's also the issue, I suppose, of how you catch it. You can't do 70 in a 60 zone, but, if the police aren't there and they don't see you at the time you're doing 70 in a 60 zone, how do they catch you? If the doctor is mates with the employer, who's given them a very longstanding employment contract to provide all of their pre-employment medical services over a period of 30 years, and at the end of a medical appointment, when everyone's left the room, the doctor rings up the employer and says, 'Just giving you a heads-up: this happened,' or runs into them at the pub down the road because they're living in a small town and know each other, there's no witness. How do you know? All the prospective worker gets is a phone call saying, 'Sorry, unfortunately you weren't successful.'

Mr McCallum : Indeed. Using that analogy in relation to what Mr Watts just said, if there were an employer nominated doctor who chose to use a Medicare number instead of a health identifier number, obviously the protections in the Healthcare Identifiers Act wouldn't be enlivened and wouldn't apply.

Senator KENEALLY: It occurs to me in listening to you, Ms Svendsen, that among the people who may be disadvantaged are women. Information about their fertility control could be passed on, even though it may have absolutely no bearing.

Ms Svendsen : Absolutely.

Senator KENEALLY: That's information that a prospective employer would be unable to access—whether or not they're likely to have children and whether or not they're practising birth control.

Ms Svendsen : And they're not allowed to ask.

Senator KENEALLY: That's right. That's the kind of information that could be accessed through the My Health Record now.

Ms Svendsen : Yes. If the system were operating the way it's intended to operate, yes, it would be accessible. There are actually a lot of records. There was a fairly recent matter with someone in relation to a depressive episode. In fact, was it at the royal commission last week, in relation to insurance being denied for someone who hadn't admitted that she'd had an episode of depression and had not thought it was relevant? There are a lot of us in Australia that have had an episode of depression that doesn't affect our ongoing health, but it does affect some people's view of you and your capabilities.

Senator KENEALLY: I understand. The reason I wanted to ask about women and fertility is that many people might think, 'Well, I haven't had a mental health problem or a sexually transmitted disease, so what is the potential impact on me?' but there are circumstances which are just part of your—

Ms Svendsen : Biological nature?

Senator KENEALLY: Yes. Right now an employer cannot ask that about you.

Ms Svendsen : That's right.

Senator KENEALLY: Thank you

Senator WATT: In terms of these privacy concerns, do you think that these are issues that can be fixed by amending the legislation? If so, what sort of things would suggest—or do you think they're not able to be solved via amendments?

Mr Watts : They can be solved through amending the legislation. I know there'd be a number of mechanisms, but the primary one would be directly including a clause similar to section 14(2) of the Healthcare Identifiers Act into the My Health Record Act. That would access for the purposes described in that clause. You'd have to make sure that it clearly applied irrespective of how the health record is accessed and would also cover access during employment and not just as part of recruitment, because that's another gap in the IHI protections, the individual healthcare identifier protections. It says it cannot be used for the purpose of employing a person, which we take to mean recruitment of that person, not the normal day-to-day business of actually having them be your employee. So you could fix it by putting that in.

Senator WATT: How are we going for time?

CHAIR: Do you want to do one more? Then I will pass to Senator Di Natale and Senator Gichuhi. If there's time, I'll come back to you.

Senator WATT: Sure, thanks. One of the other things that you've pointed out is that the bill and the current act allow the minister or the Digital Health Agency to delegate their functions. Why do you think that that is a problem, and how should it be addressed or curtailed?

Mr Gauld : Simply because it doesn't provide any parameter around who that can be delegated to. So it's completely open from our perspective. I think there should be a simple adjustment, making sure that the delegation would have to be completely confined to someone relevant to the operation of the scheme. I can't think of any reason outside of that.

Mr McCallum : Indeed. At the moment under this system private healthcare information that people are being asked to make decisions about, on who does and doesn't have access to it, isn't well communicated or understood in and of itself, and there's a lack of clarity around potential consequences. I think that even the people who have taken the time to familiarise themselves with the My Health Record would be surprised to learn that under the current system the government or the minister can delegate that information around to secondary sources and third parties.

Senator WATT: I was looking at my notes from last week, because one of the witnesses—I don't know whether you remember, Senator Siewert—raised a particular feature of the system which could be delegated and that caused particular problems. But my notes weren't thorough enough and I can't remember. This issue did come up last week, anyway. I will go back and have a look at my notes. Sorry, it's a bit like I'm sharing my problems with the world with you!

Mr Watts : One of the ones that we've pulled out particularly in our submission is the power to collect, use and disclose health information about a healthcare recipient. The system operator has that power and for certain purposes. It's in section 58, and those powers can be delegated under section 98.

Senator WATT: That might have been it. I think it was about the ability for the minister or the agency to delegate the power to release information when there are already concerns about the agency itself having that information. If that power can be delegated to someone else entirely, that opens up a whole range of other people who can be sharing that information.

Mr Watts : And delegated without any clear explanation as to why it would need to be delegated, or for what purpose.

Senator WATT: Thanks for that.

Senator GICHUHI: Thank you for your presentation. I'm yet to understand this—I'm just new to the committee—but it's a very interesting one and this is a very key area. I understand you've been corresponding with the minister's office and with the Digital Health Agency, and that you raised concerns regarding the issue of a person's record being accessed by the employer—you're saying for wrong purposes. My question is: since it's already covered in other legislation, how do you feel about the fact that this is only illegal under existing legislation? Does it answer your concerns?

Mr McCallum : No, unfortunately, it doesn't. When the Digital Health Agency has responded to concerns around employer nominated doctors accessing My Health Record data and the issue of section 14(2) of the Healthcare Identifiers Act has been brought up as a solution, or as something that should give comfort and confidence to people that those records won't be accessed, we have taken advice from our internal people as well as having it looked at and speaking to external legal representatives.

As we have discussed previously, we don't think that section 14(2) of the Healthcare Identifiers Act provides anywhere near the required level of protection for My Health Record data. If those records are accessed via a Medicare number or a DVA, then those protections in the Healthcare Identifiers Act won't apply at all. In fact, even if it is accessed via the healthcare identifier number, we think that there would be still be a question as to whether or not the provisions from a completely separate act apply to data collected under the My Health Records Act. That's why, as part of the solutions in our submission, that we recommend there actually be explicit hardwired protections, as my colleague Mr Watts has outlined in our submission, so that it removes any ambiguity. Even section 14(2) in the Healthcare Identifiers Act, if it were hardwired into the My Health legislation, would need to be improved in line with our written submission.

Senator GICHUHI: Would you know what the current obligations for employees to disclose relevant health information to employers are? Do you agree with the current laws—currently, before the change—on the obligation for employee to disclose their health—

Ms Svendsen : Their relevant health status?

Senator GICHUHI: Yes. Do you think that is adequate? Would you agree with the current laws?

Ms Svendsen : Relevant health data goes to the capacity of an employee to do the job that they're being employed for, and/or, in some circumstances, any adjustments that an employer might need to make for an employee's existing health injuries or concerns. It doesn't go to My Health Record generally. It doesn't go to my childhood illnesses or anything that's happened to me as a teenager, or any of those things. I might need adjustments, in terms of a screen, so that I can see what I'm reading because I have poor eyesight. I might need to be able to stand more frequently. You might not be able to carry as much. They're the adjustments that you're required to advise your employer about that go directly to your ability to perform your duties as an employee that you're being employed for, not other things.

Senator DI NATALE: Mr Gauld, in one of your recommendations, recommendation 2, you say:

… Some allowance has to be made for the sharing of information based on consent from the patient, but consent needs to be clearly delineated in the legislation and needs to rely on clear, informed consent of what the patient is agreeing to. …

Can you maybe just elaborate on what you mean by that? What are the circumstances where that would need to occur? Are you worried that it might open the door to potential abuse from an employer, where nominally they're seeking consent, but it becomes an expectation, if you like?

Mr Gauld : There are two parts to where this came from. One of them was from a situation that was described to us as best practice but that was not necessarily enforced—that is, in the doctor-patient discussion, the doctor writes up their clinical notes and that gets uploaded, but there didn't appear to be a very clear requirement that the doctor had to get permission off the patient to upload that clinical note. It was just a doctor's clinical note. Best practice was that the doctor would discuss it with the patient, tell them what they were about to load up, verbally agree and away they'd go. But it doesn't appear that that's an actual requirement. The other part of it, I guess, deals with the power dynamic of why the patient is seeing the doctor. This is the issue of employment related purposes, pre-employment, workers comp, and ongoing employment related purposes, where the employer might say to the prospective worker, 'You've got to consent to something before going,' or there might be some implied requirement that you've got to participate in a particular manner. These were some of the issues that we were grappling around with. But, ultimately, the real fix for us is that carve out in the Healthcare Identifiers Act needs to be bolstered slightly and inserted entirely into this, and then those issues go away.

Mr McCallum : I'll probably just briefly add to that, in terms of some of our concerns around consent. It shouldn't be just a one-off blanket consent. For example, if there was a law enforcement agency that is accessing somebody's record for the purposes of an investigation, it should only be for the purposes of the investigation and for the length of time that it's needed.

Ms Svendsen : I'd probably say that we think access to health records by anybody but treating practitioners should be limited to court orders.

Mr McCallum : Yes, indeed.

Ms Svendsen : And therefore there is a relevance to that access, there is a limit to what would or could be accessed and why, and it's been justified before the access has been granted. Under no other circumstances should that be accessed other than by health practitioners that are treating somebody, in our view. I'd argue that the issue around workers and workers' assessment is an assessment for a separate purpose; it's actually not for treating a patient or necessarily for their benefit. You can argue that it's possibly for their benefit. But a health record, in my view and from my own education, was for the benefit of the patient we were treating—the results, the diagnostic tests, what's ordered, what treatment they have, what responses they have to it, what the observations are and all of those things we need to put in a health record so that we can actually assist somebody. That's fine, but it's there for that reason and that purpose only. It's not for somebody to go trawling through.

Senator DI NATALE: It seems to me that most of your objections—and I think they're shared—can be addressed through some legislative change—and it's not major legislative change—and perhaps some compliance changes, perhaps looking at penalties and so on. But you don't appear to have any objections to the broader architecture of the scheme. Questions of access and default settings don't seem to be anything that you have addressed through your submissions. Can you speak to your view of the broader architecture of the scheme, where the current default settings lie and whether you'd be comfortable with those if those specific concerns around third party access were addressed through those legislative changes that you've recommended.

Mr Watts : We do have some concerns about the default settings as they currently stand.

Senator DI NATALE: Specifically?

Mr Watts : Specifically, we think they made sense in an opt-in system but, much like the legislation itself, they haven't been updated to reflect the new opt out nature of the system. The fact the default settings essentially default to the lowest settings of privacy automatically is problematic in a system where it's now not only possible but extremely likely that Australians will be opted into this program without knowing about it, having heard of it or having any concept of what it does.

Senator DI NATALE: Specifically you're talking about the password protection, the main change?

Mr Watts : Yes. Basically, creating a situation where someone who has opted in by default is automatically at the most open privacy settings would be a good first step.

Senator DI NATALE: So your argument would be that it should be at the highest privacy settings, and the onus should be on the individual to selectively change those things?

Mr Watts : I'm not sure we have a view on the exact balance between privacy and utility in terms of the default settings and the granularity of where you should put that slider. I think it would be easy to argue that either extreme is probably not the right answer. There's probably somewhere in the middle that's better.

Senator DI NATALE: But the PIN thing is that either you have one or you don't.

Mr Watts : Yes.

Senator DI NATALE: And it's either opt in or not, so I suppose there are two ways of addressing that: you make it an opt-in system and keep it where it is, or you continue to have an opt-out system and your default is that you need a PIN. So there's not really much grey in there. Do you have a view on either of those options?

Mr McCallum : I don't think it should be an opt-out default until the privacy issues have been addressed sufficiently. In our submission, we say that, in light of those issues, at the very least the opt-out period should be extended. The issues of the difference in the legislation being designed for how the system was when it was opt in, rather than opt-out, obviously remain.

Senator DI NATALE: Yes. I'm assuming we can deal with the concerns you've raised. If, hypothetically, we dealt with that, we're still left with this question: do you have the opt-out with the current settings, or do we change it from opt-out to opt-in? Delaying opt-out is probably delaying the decision.

Mr McCallum : I absolutely understand your question. I guess I'd respond by saying we're happy to cross that bridge when we come to it, but we're not there yet.

Senator DI NATALE: Okay, you haven't got a firm view on that.

Ms Svendsen : It's a little bit unable to be nuanced, but I absolutely support the concept of an eRecord.

Senator DI NATALE: I think we all do.

Ms Svendsen : I opted in. I've now cancelled my eHealth record because the settings have changed. I opted in with the highest privacy and I determined what it was, and I've recently cancelled it.

Senator DI NATALE: Mr Watts makes the valid point that a significant number of people won't even be aware that a record has been created for them. I suppose we're trying to engineer a system that caters for that likelihood. Where those privacy settings are is part of the discussion that we're having at the moment.

Mr McCallum : There was a clear onus on the agency and the government to make sure that there was proper communication and a public campaign before the system was changed.

Mr Gauld : It's difficult to cast a view when you're looking through the lens of what's currently before us, at which point we want the highest possible settings. If all of these issues are addressed, then perhaps it would be time to reconsider that position. Certainly, when we provided our members information and gave them the option of information about security settings or information about opting out entirely, even with the option of security settings, they went with opting out. At this point, we would err much more towards—there needs to be a one-on-one conversation with the individual user before any security setting levels are reduced, whether that's with their healthcare provider, a government education program or some other combination of those things—I'm not too sure. We would be erring much more towards default high-security settings with an educated decision by the healthcare recipient to reduce that security setting if they choose to.

Senator DI NATALE: Thank you.

Senator KENEALLY: Thank you for being here today. Mr Gauld, in your opening statement you mentioned providing information to your workforce and being inundated, I think your word was, with responses and people requesting information on how to opt out. It would suggest to me that most of your workforce had not received any messages from a public information campaign provided by the government on the need to make a decision to opt out. Was that a fair conclusion from your experience of speaking to your workforce?

Mr Gauld : That's absolutely correct.

Senator KENEALLY: Following on from something that Senator Di Natale said, it would seem to me that younger workers may be particularly unaware of the health record and its impact. Does your workforce have a particular age profile?

Mr Gauld : We've got a fairly mixed age profile. Less of a gender profile, but we're working on a range of initiatives to try to encourage women into the trades. We absolutely have members across the full age group. It's not our experience that a particular age demographic is struggling with this. Across the board, we're finding that our membership have no knowledge about this. When they are aware it's going on, their overwhelming reaction at this point in time is to opt out.

Senator KENEALLY: To you, the HSU or the ACTU: one of the areas I'm interested in, in regard to the My Health Record, is its impact on 14- to 18-year-olds—that is, it changes the privacy settings that they currently enjoy. I don't know whether any of your workforce fall in the under-18 category, but do you have any reflections on the impact of these changes on people in that age group?

Mr Hayes : I think we could suggest that we don't have terribly many members of that age group. But certainly within our allied health professionals, within those groupings, the gender mix is very much equal for women to men. We have seen so far that the opt out for a lot of health professionals is reasonably high and unexpected. Professionals within areas that care for children—health promotion and those sorts of things—are opting out. I could only suggest that the younger people they are looking after—not necessarily that they've had those conversations, but, if they were to—probably wouldn't be able to confidently suggest that it's something that you should engage in.

Mr McCallum : I'd add to that by saying that youth employment is a problem, broadly, in this country. It's hard enough for young people to get a job these days, and if they do, they're at a high risk of being exploited or having issues in the workplace. The last thing that they need on top of that is for loopholes in the current My Health Record system to be there. We've actually got a case study in our written submission about someone that might have had issues in terms of their recreational activities that required medical attention. That is the last thing that young people up to the age of 18 need when they might be working part-time or getting their first job.

Senator KENEALLY: Thank you.

Senator WATT: One of the other issues that came up last week was from some witnesses expressing concerns about the potential privatisation or commercialisation of the My Health Record database. I think that's something you raised as well. Is there anything specific that you think could be inserted into the legislation to prevent that from occurring?

Mr Gauld : I opened with some remarks about a social licence, and the level of awareness within the Australian community about what's going on out here is low as it already exists. When they find out about it, they're opting out. If they were then to find out that it's privatised I think you would have almost no-one left in the system, which is not ideal for what its longer-term stated aim is supposed to be. It shouldn't be used for the purposes of privatisation or commercialisation, we would say.

We think that there is some reasonable legislative precedent around this country which shows that matters of sale of essential public services and assets, for example, can only proceed to privatisation through a vote of two-thirds majority in both houses, for example. There could be some mechanism put in there that make sure a very robust process is followed before it ever goes down that path.

Mr McCallum : I'm glad you raised that, Senator. We strongly recommend that the committee take this risk and this issue into consideration. We've seen more and more instances of data and agencies, land title registries et cetera, that have been privatised. These are things that people never thought would or should be privatised. Obviously, something like healthcare data has a massive attraction to insurance agencies and the like. We would hope that the committee would consider that and look at how there might be legislative protections that could be applied to prevent that from ever happening.

Ms Svendsen : We go back to our premise that it's a health record between the treating practitioner and the patient, and that it's not for any other use at all.

Senator WATT: Thanks, that's pretty much it.

CHAIR: Thank you very much for your time today, it's very much appreciated.

Mr McCallum : Thank you.

CHAIR: We will now suspend for a half-hour dinner break and we'll start again at seven o'clock.

Proceedings suspended from 18:28 to 19:03