Julie Collins (Franklin, Australian Labor Party, Shadow Minister for Ageing and Mental Health) Share this | Link to this | Hansard source

Labor has been very supportive of e-health and the concept of the My Health Record. But, my goodness me, here is another stuff-up from the government. There really is nothing they can't stuff up. Quite frankly, we remain deeply concerned about the government's bungled rollout of the My Health Record. In the opt-out period, of course, people went online to try to opt out and the system crashed. Of course it did. That is yet another failing of this government, like all of its other failings. It could not organise anything properly. Implemented by a competent government, the e-health record could deliver tangible health outcomes to improve people's wellbeing and save the health system and the taxpayers of Australia millions of dollars—indeed, billions of dollars if done properly. But, of course, that is not what we have seen from this government.

We've had reports this week that over a million Australians are so concerned about the way this government has implemented the My Health Record that they have opted out. Over a million Australians have already opted out. The government admitted that there were some issues in this, and they did extend the opt-out period for people who wanted to opt out. But Labor has called on the government to actually halt the whole process because it has been so bungled. Their failure to communicate has fuelled many of the privacy and security concerns around the e-health record and the My Health Record.

We've had a lot of issues raised with us. You can imagine some of the concerns that I have had raised with me, as the shadow minister for ageing and mental health, particularly from people suffering mental ill health who want to be able to control their health record and who know how important it is that the physicians, doctors and nurses taking care of their health actually have access to this important information. They don't want to have to explain their stories and their illnesses every single time they need to access services. But they quite rightly point out that they want to be able to control their records, which is what the My Health Record was designed to do. But they are concerned about the security of these records because of the way the government has mishandled them. They are rightly concerned.

We had a Senate inquiry not that long ago about insurance companies and some of the issues that have been going on. We've now, of course, had the royal commission into banking and financial services that has been looking at insurance issues, and we've had a lot of people with mental ill health raise issues around disclosure of their conditions and what happens. This is why they are concerned about the government's control of their records and about how they are able to opt out and hide the information that they don't want to be there but able to have access so the people who are supporting them to receive the services they need to be well can actually have the information that is relevant.

We know that the e-health record could be really important when it comes to older Australians and things like polypharmacy and more diagnostics. If they have a fall and they go to a hospital, they then have to have a whole range of tests, some of which they may have already had but the hospital doesn't have access to. So we can see how important this health record could be if done properly. But, shamefully, that doesn't appear to have happened.

We are very concerned that the government has undermined confidence in what should have been something really powerful and really useful for those people who need it most. Instead, what we've seen is that those people who need it most are the most likely not to use it, because they have serious concerns about the government—about the government being able to look after their privacy and about the government being able to ensure the security of these records. It is very concerning for people who are contacting me in my office. A whole range of people—the experts in this area and, indeed, the AMA—have actually come out and talked about their concerns about the My Health Record. Indeed, the AMA have said that they want to ensure that the government gets this right. They've said that they have at all times wanted to support the concept of the My Health Record, because they know how valuable it is, but they have had concerns. I do admit that some of them have now been addressed by the government, but there are still concerns, and this government has still bungled it.

Clearly, when over a million Australians have opted out, there are still some concerns out there in the community. As I said, this opt-out period ends in November. So, here we are in September. People's opt-out period hasn't been going for that long really, and, as I said, the government did extend it by a month. How many more Australians are going to opt out of this system? How valuable will it be if we get millions of Australians opting out? It would be a shame if the government didn't halt this, fix it properly and run a community campaign so that people could properly understand the benefits of the My Health Record: that it would save them telling their story every time they get a referral and every time they go somewhere and that it would stop tests having to be repeated—the diagnostics, blood tests and scans that your clinicians and specialists and the people looking after your care should already have access to. In emergency departments and hospitals, there are increased wait times because this information is not available when the people looking after you need it most. The government has completely undermined confidence in this system, and it should be ashamed.

I'm obviously supporting the amendment moved by the member for Ballarat. I've spoken to the member for Ballarat about my concerns for people with mental ill health and their concerns and the concerns that are being raised with me every day. She has been extraordinarily responsive, because she understands this issue, I think, better than the government. Quite frankly, the Minister for Health doesn't seem to understand quite how concerned the community is, but when over one million Australians have already opted out—and we don't know how many more will between now and November—clearly something has to change. Clearly there's a problem here, and the government needs to do something about it.

Anne Stanley (Werriwa, Australian Labor Party) Share this | Link to this | Hansard source

We in the Labor Party support e-health and the concept of the My Health Record. If these policies were implemented by a competent government, they would be hugely beneficial to Australians. Alas, this government has taken the project of the e-health delivery that Labor began when we were last in government, and it has bungled it every step of the way. The last Labor government's e-health system was opt in. We thought this was the right approach. But this government doesn't seem to care about informed consent. It is a mystery why they've chosen an opt-out system. There's no proper explanation why, no attempt to educate the public and no regard for the privacy of Australians. The previous Turnbull government and now this government continue to botch the rollout of the opt-out period, undermining public trust in these reforms.

Australians have every right to be concerned about the security of their personal information with the My Health Record. This amendment is patching up legislation that, like other health policies of this government, is broken to the core. The My Health Records Amendment (Strengthening Privacy) Bill 2018 rightly responds to the public anger over My Health Record. Labor welcomes the changes in the bill. We welcome requiring law enforcement and other government agencies to get a court order to access records. We welcome permanently deleting the health information of people who opt out of My Health Record.

However, we do not think these changes go far enough. They will do little to allay the community fears about privacy and security. This bill does nothing to protect some of the most vulnerable Australians in our communities. Take, for example, women fleeing violent partners or children who need privacy from non-custodial parents. The Law Council of Australia highlighted these concerns this week. Parents who are subjected to apprehended domestic violence orders may still access their children's health records even if they're only allowed supervised contact with those children. This, of course, opens the door to accessing much more information, perhaps such as the residential address of the child and the other parent. This is a serious issue and places vulnerable children and their parents at greater risk from perpetrators of violence, and this can't be allowed to happen. Despite these concerns, the government is still proceeding with the opt-out system. This really isn't good enough. This is a government that does not care about the most vulnerable people in our community. The government must suspend the opt-out period until these issues are addressed to protect the privacy of vulnerable Australians. The government must also ensure they are not enabling family violence through careless loopholes in these patch-up amendments.

This is a government that doesn't care about the healthcare needs of Australians. The residents of my electorate of Werriwa have suffered enough thanks to the government's ideological war on Medicare and public health care. They've cut Medicare and hospitals year on year since the horror budget of 2014. The government has continued through the last four years with this assault, with $2.8 billion to be cut from hospitals between the next election and 2025.

I'm appalled on behalf of residents in my electorate of Werriwa. Not only are my constituents worse off under this government's healthcare cuts but now they cannot count on their personal healthcare information being kept secure. This government hasn't been capable of delivering quality IT reforms and does not care about delivering quality public health reforms. When we combine the two together, My Health Record could be a complete disaster waiting to happen.

A Labor government will deliver e-health reforms but put the privacy and security of Australians first. We will support this bill in the House because something is better than nothing when it comes to privacy, but we want to refer this bill to a legislative inquiry in the Senate. This inquiry will rightly test whether the bill adequately responds to privacy and security concerns. The Senate has rightly agreed to our proposal for an inquiry into the My Health Record. This inquiry will go beyond the bill. It will look at the government's decision to shift to an opt-out system, the way it communicates this fundamental change and the default settings within the record.

This government's failings on My Health Record should come as little surprise to all of us in the House. This is a government with an appalling track record in delivering efficient, secure IT services. They've botched the rollout of the NBN, they've botched the rollout of the NDIS, we had the census issues, and now we seem to have botched the My Health Record all the way through. It is very important that we get this right to deliver the important reforms that My Health Record could deliver.

Tony Zappia (Makin, Australian Labor Party, Shadow Assistant Minister for Medicare) Share this | Link to this | Hansard source

I speak in support of the amendment moved by Labor to the motion for the second reading of the My Health Records Amendment (Strengthening Privacy) Bill 2018. Since coming to office, the coalition government has resorted to every crafty trick to cut health spending across the country. It's done so firstly by freezing the Medicare Benefits Schedule payments to doctors—with out-of-pocket costs now rising, I understand, to something like on average $38 if you want to see a GP or $88 if you want to see a specialist—and then by negotiating dud deals with pathology centres with respect to their rent payments; three different attempts at co-payments by patients; cutting hospital funding to the tune of $715 million between 2017 and 2020, and more after that; cutting public dental services; cutting Indigenous health programs; and refusing to increase payments to GPs when they visit people in aged care. Bear in mind that the aged-care access incentive payment, I understand, ends in April of next year, and that in effect means that we will see fewer GPs visiting our aged-care centres. We just had a matter of public importance discussion with respect to the care of people in aged-care facilities across Australia, and one of the real concerns that arise from this government's cut to health expenditure is that the AMA has predicted that, over the next two years, one in three doctors who visit a patient in an aged-care centre will either scale down their visits or cut them out altogether. Again, this is all because of cost cutting by this government.

I accept that, in a budget that stands at something like $78 billion of health expenditure, the government would be responsible in looking to make efficiencies in that expenditure. Every government should be constantly trying to go through its outlays and seeing where money can be saved if it can be, and I have no criticism of governments trying to do that. But I have criticism of governments doing it when the savings result in a diminution of patient care for people across this country. If a saving can be made without diminishing service and without diminishing patient care, by all means we should look at it. That's exactly what the My Health Record was expected to do when it was proposed by Labor in 2012.

If properly administered, the My Health Record system was going to have the dual objective of providing better patient care and lower health costs, and I will explain why. Patients benefited because the treating health professionals would have had access to all patient records, not just some, regardless of where the patient went to see a doctor. That meant the doctor could make a decision based on the best interests of the patient and do so quickly, so there is the benefit to the patient right there and then. It also meant that, from the public purse point of view, where the government is constantly saying we need to make savings and find efficiencies, there would be no reason to duplicate the many unnecessary tests that doctors call for when they don't have access to all the records that they need of a patient. That's because those records are being held somewhere else. It's not necessarily that the tests have not been carried out; it is more the case that the information from those tests might have been held somewhere else and therefore are not available to the treating doctor.

That's particularly the case when a patient presents to the outpatient's department of a hospital, where it is usually an emergency situation where immediate care is required,. The outpatient's staff and medical professionals need whatever information is important to them to make the right decision for that patient, and quite often that means sending the patient immediately in for X-rays or diagnostic imaging and the like. Again, a lot of that could have been avoided and time could have been saved in the treatment of that patient if we had a good My Health Record system in place. That's exactly why it would have benefited both the patients and the public purse.

Unfortunately, because of this government's incompetence, the public has understandably lost confidence in the government's My Health Record system, and they are opting out in large numbers. We see in the latest figures, only in the last 24 hours, that some 900,000 Australians—since the opt-out period was brought in, which was only a couple of months ago—have already opted out of the My Health Record system. By the time the opt-out period ends on 15 November, it is likely that over one million Australians would have opted out. They do so for a good reason: because they have lost confidence in the government's management of their records. The damage being done is not only being done to both the public's benefit and the government public purse right here and now; the damage is being done because when people lose confidence in the government's management of a system it will take a long time for them to have that confidence restored.

We've already had, to date, the AMA, the RACGP, the Law Council of Australia, a member of the government's backbench and others all criticise the government's administration of this program. But then one shouldn't be surprised about that. When one looks at the this government's management of a number of government programs, including the robo-debt debacle; the census of 2016, with the confusion and lack of confidence that caused with people not having the confidence to provide accurate information; and the Medicare and PBS data leaks that occurred under this government, we can understand why people would say, 'I don't mind the government setting up a My Health Record if I can have confidence in it being confidential. But if it is going to be either abused or accessed by those who have no right to access it, then of course I don't have confidence in it and I will not have my record placed within it.'

The minister comes into the chamber every day in question time and talks about how this government is committed to an excellent health system for this country and relies on the work of the PBS to do that. That is work that, quite frankly, has little to do with the government's administration and has been ongoing for decades. Both sides of parliament have supported the work of the Pharmaceutical Benefits Advisory Committee in terms of the medications that they recommend. Then we also have the government coming into the parliament every day and saying things like, 'Under our government, health expenditure has increased every year,' forgetting to mention that, quite logically, health expenditure would increase because the population is increasing, if nothing else, and that we have an ageing population, which again, as the records would show, always incurs additional costs to our health system.

The reality is that this government has mismanaged the health record system of the country. The government has bungled it. Whilst this bill seeks to address some of the mistakes within the act, regrettably it doesn't go far enough. Yes, it extends the opt-out period to 15 November. That is in some respects a good thing, because it gives people more time to opt out. I'm not sure what happens after that if people are determined to opt out, but nevertheless it gives people more time to opt out. Yes, it has brought in a provision which ensures law enforcement agencies will require a court order if they want to access health records of a person of this country.

However, it doesn't address the issues raised by others on this side of the parliament and by many of the people out there in the community about matters such as access to records of children in this country, particularly those aged between 14 and 18, who, in many cases, don't want their records accessed by anyone, including their own parents, for various reasons. They believe that they are old enough that only themselves and their health professionals should have access, and nobody else. With respect to children who come from families that have separated, one parent may well not want their address disclosed to the former husband or wife. Through access to the health records of the children, one party to the failed marriage can get access to the living address of the other person. Those concerns are not addressed by these changes, and they need to be.

We then have concerns about workers in this country who may have to do a work medical of some sort. The work medical is usually done by a health professional that works for their employer. That means their employer's doctor gets access to their health records through this system, but they don't know—and neither does anyone else—just what of that information is then relayed back to the employer by that doctor. It is a concern. We now hear that big pharma—that is, big pharmaceutical companies—might also have access to some of the health record information if they apply to use the information for research purposes and the like. It creates another element of uncertainty about who might have access to this information and how they will use it once they get it.

Because of the uncertainty, the benefits that the My Health Record system was likely to accrue will be lost for a long time. It is more so than ever the case today that people are moving away from their normal residential address. It could be simply for travel. People travel a lot more than they ever used to. Work opportunities have people moving from one location to another. People then change their living address through early retirement, or for other reasons in addition to that. Perhaps they just want to move. The reality is that the population moves more so than ever before. When they move, it's very likely that they then change their doctor and go to a different doctor's practice. That means that, if they can't take their health records with them—and they can't always do that—their whole health record system has to start again. Again that comes at an incredible additional public cost. As I said earlier, the X-rays, blood tests, diagnostic imaging and the like that are needed in an emergency situation may also be needed when you change doctor.

Some of the people that are going to be worst affected by all of this are people that live in country Australia, because people that live in country Australia, for a whole raft of other reasons, are also very likely to need to see a health professional away from their normal place of residence. Again, it would seem to me that the bungling of this service by this government is going to make it more difficult for those people as well. If they are away from home and they have to see a doctor or go to the emergency department of a hospital outside of their normal address, then all of their medical information that would have been absolutely vital to the best treatment that they require would not be with them, because the system itself doesn't provide it. That's why we supported a My Health Record system in this place five or six years ago, because it was in the public interest to do so. What I see now through this government's bungling is a system that was well intended, and still is, that is likely to be undermined not just for a temporary period whilst we sort out the problems but for a long time to come. With that, the benefits that were hoped for as a result of it will be lost.

Emma McBride (Dobell, Australian Labor Party) Share this | Link to this | Hansard source

I rise to speak on the My Health Records Amendment (Strengthening Privacy) Bill 2018. This bill responds to the public's concerns over aspects of My Health Record and does make a number of changes which Labor welcome. But we don't think it has gone far enough. Labor will support this bill in the House but note that it has been referred to the Senate Community Affairs Committee to consider whether this bill adequately deals with the public's privacy and security concerns or whether further amendments are needed. The inquiry is due to report on 8 October.

Labor supports e-health and the concept of the My Health Record, which is why Labor began delivering an electronic health record system when we were last in office. I will focus my remarks today on the benefits of a properly delivered digital personal health record system from the perspective of a pharmacist. My Health Record, as James Grant, a pharmacist working in informatics and electronic medicines management, points out in his editorial for GRIT, the journal of hospital pharmacists of Australia, is basically a high-tech manila chart medical record, which means health professionals are able to read and contribute to a single longitudinal medical and medication history of the patient. Comparable systems have been effectively and safely rolled out elsewhere. I first saw an integrated digital system in action in Sweden in 2006, and over a decade later we're yet to realise the benefits in Australia.

Pharmacists and their representative bodies have been strong and consistent advocates for integrated digital health records for many years. This is because we know the risks associated with gaps in information, particularly in emergencies. As Professor Michael Dooley, President of The Society of Hospital Pharmacists of Australia, of which I am a member, said recently:

The Society of Hospital Pharmacists of Australia (SHPA), alongside many other health organisations, has advocated for the integrated use of electronic health records for many years. As pharmacists working in hospitals we are well aware of the risks faced by patients which can occur when there are gaps in the timely provision of information between medical, allied health and pharmacy services. This is particularly true during emergency admission to hospital and often when patients return from hospital to care in the community. These gaps can contribute to reduced health outcomes for Australians.

Pharmacists were some of the first health practitioners in Australia to become computerised in their practice settings. I know from my experience, with 20 years as a registered pharmacist, the benefits that a properly delivered digital personal health record system would provide to patients, carers, health practitioners, the wider community and government.

The potential for better health outcomes and cost savings is significant. A 2013 report found that medication misadventure led to 230,000 hospital admissions, costing the Australian health system more than $1.2 billion annually. That's separate to the impact on the person or their family. This stacks up with earlier 2012 modelling which estimates the net benefits from digital health records could save $11.5 billion over 15 years, with close to 90 per cent of the expected savings coming from reduced avoidable hospital admissions and more effective medication management—a fundamental role for pharmacists.

I would like to outline a vital part of medication management performed by thousands of pharmacists across Australia multiple times a day in different practice settings: medication reconciliation. Medication reconciliation is defined as the formal process of obtaining and verifying a complete and accurate list of each patient's current medicines and matching the medicines that the patient should be prescribed to those that they are actually prescribed. Any discrepancies are discussed with the prescriber, and reasons for changes to therapy are documented.

Medication reconciliation is a four-step process. The first step is to obtain and document the best possible medication history, the second is to confirm the accuracy of the medication history, the third is to reconcile the history with prescribed medicines and follow-up discrepancies, and the final stage is to supply accurate medicines information when care is transferred. This strategy of medication management has been shown to improve medication safety and significantly decrease errors, which have an impact on the person and on the health system. This strategy is vital, particularly in emergencies or in situations of crisis, such as an unconscious patient being admitted to emergency; a child with a complex medical history in the absence of a parent or carer; or a person with a major mental health problem in crisis.

I worked as a mental health pharmacist for most of my working life, and one of the main roles that I performed was making sure that patients' medications on admission were accurately documented, that we had the most up-to-date information, and that this was then confirmed with other sources, whether it was their general practitioner, the facility that they might have been transferred from, or the patient's own medication in a dosette box or a Webster-pak. In reconciling the history with prescribed medicines and then following up any discrepancies, when you're doing this on a daily basis with patients in crisis inside a mental health facility, the benefits that an e-health record would provide cannot be overestimated. Having accurate, up-to-date, relevant information at your fingertips would make this process more efficient, more effective and safer. It will save lives. As Leonie Abbott from the SHPA Electronic Medication Management Leadership Committee points out:

Sifting through growing volumes of medicines information while caring for some of the most unwell patients is a daily challenge in hospital pharmacy, especially in emergency settings and during crucial transitions of care from hospital to the community when medication errors are most likely to occur.

As the Pharmaceutical Society of Australia, the peak body representing almost 30,000 pharmacists working in all sectors, outlined in its submission to the inquiry, a My Health Record would mean that a pharmacist in emergency could readily identify medication and medication-disease interactions, could identify necessary dose adjustments with respect to a person's kidney or liver function, and could identify potential and actual adverse medication effects by having a more complete picture of a person's medication history and regime. When I was working in Wyong Hospital in my electorate, one of the key roles of every pharmacist in the team was to do these medication histories on admission. The SHPA has a standard that these should be done within 24 hours of a patient being admitted, but with the high throughput in public hospitals, particularly in regional centres, that's not possible. E-medication or digital integrated records would mean that health practitioners, particularly under strain in regional or rural settings, would be able to have accurate, reliable, comprehensive information at their fingertips. This must be done properly.

As a pharmacist, I am proud of Labor's initiative in commencing the rollout of the electronic health record system when we were in last in government. As Professor Michael Dooley, the President of SHPA, said:

The widespread introduction of My Health Record is a good step towards timely access to the important information needed when making decisions regarding medicines. The progression of comprehensive electronic health record management will bring the provision and exchange of health information into this century. We are pleased to see the federal government has today committed to swiftly addressing stakeholder and community concerns about privacy through legislative and regulatory means. This will provide greater support to healthcare practitioners in providing the best possible care, and hopefully will reassure all Australians that electronic healthcare records are an essential part of receiving high quality health care in all settings.

Notwithstanding the hope of the SHPA and other pharmacy and health peak bodies, the very real risk, in my view, is that this government's mishandling of the My Health Record has undermined community confidence and participation in what should be a transformative health initiative. In particular, the government has failed to properly explain to the public the change to an opt-out system from an opt-in system and to enhance the privacy and data security features of the scheme to a degree consistent with the wider reach of an opt-out model. The benefit to both individuals and population health research are best achieved when a threshold participation is reached. This is an advantage of an opt-out as a default setting. However, if the public confidence in the system is compromised, as it has been, to the point where a significant number choose to opt out, these benefits will not be realised. Contributing to this risk is that, over the last five years, and the last few weeks, this government has consistently undermined the public's trust in government. The public simply do not believe that this government is on their side or that this government will protect their interests ahead of big business or big financial institutions. That is why workers have concerns that their health records could be made available to potential employers, and consumers are concerned that their health records could be made available to health and life insurance companies.

However, my interest in this issue is not to criticise the government. Rather, as a health professional and a member of the party which initiated the My Health Record, I want to see this system be given every chance to reach its full potential for individuals, for health practitioners, for the wider community, for government. In this regard, the news today that 900,000 Australians have already opted out is particularly concerning. Labor's position is that the government should suspend the opt-out period until all of the remaining privacy issues and security concerns are properly addressed and public confidence in this important health initiative is restored.

As I mentioned earlier, for the benefits of population health, there needs to be a threshold of participation in this, which is why the opt-out model is one that would work well if health practitioners had the information to properly inform patients and if people had the right information to make an informed decision about whether they opt out. What I'm particularly concerned about is that the mishandling of My Health Record could set back even further in Australia what could be a transformative initiative. As I mentioned earlier, comparable systems of integrated digital health records have been introduced in other parts of the world safely, where the security of data is robust, where privacy measures are strong, and where people have the confidence that they can provide their own health information and know that it's going to be appropriately handled and accessed, as is needed, by the appropriate person.

Recently I had the opportunity to have a demonstration of the My Health Record in a community pharmacy, Blooms pharmacy in Wyong. I was really pleased that the PSA has made a concerted effort to inform as many of their members or as many pharmacists as possible, as has the SHPA and other pharmacy peak bodies, to make sure that pharmacists are as well informed as they can be in order to be able to have these informed conversations with consumers about their health needs. It's important that public confidence in this important public health initiative it restored.

The PSA, in its submission to the Senate inquiry, makes a number of suggestions for ensuring the privacy and security of the My Health Record system. These suggestions make sense, and they include strict controls on third-party access to My Health Record; allowing researchers authorised by governments to access the system for data analysis and reporting, but not to access individual records, so that the system can be evaluated and future policy informed; no access to the My Health Record system by the Australian Taxation Office or by commercial interests; and excluding health and life insurance companies from access to the My Health Record system. Further, the PSA suggests that patients should not be compelled to provide information from their My Health Record to insurers. Those are all very well-thought-out and sensible recommendations that I hope are taken on board to ensure that privacy and security concerns are properly addressed in order to give the My Health Record the best chance of success for individuals and their health and wellbeing and for the wider health system.

The PSA provides these suggestions for measures which pharmacists believe may help to address some of the community privacy concerns in the My Health Record. Public advertising should highlight and clearly explain that patients can set access controls to their own My Health Record and show them where to find the instructions to do this. Public advertising should include clear information on access to a My Health Record for young people aged 14 to 17. The PSA suggests that consumer and health professional advertising should include clear information around the protections in the My Health Record system, including that it's a criminal offence for anyone other than a registered clinical professional to access a patient's record. It's a criminal offence for a registered clinical professional to open a record unless this is done in the context of care provision. And, if a person deliberately accesses an individual My Health Record without authorisation, criminal penalties may apply.

I am pleased that the Senate has agreed to Labor's proposal for an inquiry into My Health Record as a whole. This will deal with broader issues beyond the scope of this bill, such as the government's decision to shift to an opt-out system from an opt-in system, its communication of this fundamental change, and default settings within the record. I hope that the outcomes of this inquiry will assist in improving public understanding of and participation in My Health Record. This will give My Health Record the best chance of the success it was designed to achieve for individuals, health practitioners, carers, the healthcare system and the government.

Sharon Claydon (Newcastle, Australian Labor Party) Share this | Link to this | Hansard source

I also rise today to contribute to the debate on the My Health Records Amendment (Strengthening Privacy) Bill 2018 and am very happy to support amendments moved by the member for Ballarat in doing so. I am a huge supporter of electronic health records in principle. Done properly they have the potential to revolutionise health care, as we've heard throughout this debate. Labor established electronic health records when in government. We know the benefits they can deliver. They can dramatically reduce errors, improve diagnoses and save the health system billions. If, heaven forbid, you find yourself in an accident and arrive in an emergency department in whatever part of Australia, who would disagree with the notion that your receiving ED could log on and have ready access to all the important information regarding your health?

There are many situations where this could be incredibly advantageous, but like many Australians I am concerned about data security and the conditions under which third parties, especially commercial operators, can access private medical data and information. This government has given me absolutely zero reason to have any confidence in their capacity to do this properly. They have completely bungled the rollout to date and have utterly failed to explain the process or principles of My Health Record to the Australian people. For many the first they heard about it was when they learned that they'd signed up without their knowledge and that their most personal medical information was now stored on a central repository. Add this to the government's appalling track record on data and IT security and you have real cause for concern. From the robo-debt debacle to the botched census and the failed NBN, this government has an embarrassing legacy of failed projects and dodgy patch-up jobs.

For these and many other reasons I made the decision last month to opt out of the program until the government gets it right, and I'm not the only one; people across the country also have a lack of confidence in this government's capacity to deliver this program and are voting with their feet. It was revealed this week that nearly a million Australians have now actively removed themselves from the system, and we still have two months to go in the opt-out period. This should have been a great program that streamlined the health system and made it more reliable, but in the hands of this government a great project with a lot of potential has been utterly bungled.

The public backlash has been swift. The bill before us today is a mad scramble to fix some of the problems that the government should have foreseen and fixed months ago. It goes some way towards responding to the community anger by creating the need for a court order for government agencies to access medical information and by deleting records once someone opts out of the system.

While Labor welcomes these changes, we do not think they go far enough. They are necessary but not sufficient. There are a number of protections that Labor believes are still necessary to deliver adequate protections and restore community confidence. For example, nothing in the bill today will address concerns about the safety of women and children fleeing violent partners. There is a very real concern that instead of helping people the information within the health record could be used to facilitate domestic violence by giving former partners, or non-custodial parents, access to treatment information, which could be then used to identify where their ex-partner and children are living. This is utterly unacceptable and it must be fixed as a matter of urgency. Similarly, workers have told us that they're worried that if they have had pre-employment checks or a workers' compensation assessment by a doctor then this information may be passed on to their employer. Nothing in the bill before us today would stop employers using this information to discriminate against employees on the basis of pre-existing medical conditions.

But we won't hold this bill up. We understand that if the My Health Record system is to be successful it must secure widespread buy-in, and this bill is a reasonable starting point for building trust, limited as it is. The first change proposed in the bill would mean that any law enforcement agencies or other government bodies would not be able to secure access to content within a My Health Record unless they either got a court order or were given express consent of the record owner.

The bill also sets out strict conditions that must be met in order to secure a court order. This is an important change that addresses broad concerns about how the data might be shared between agencies, as they do with so much other information. While the government argues that this protection is already contained in the policies of the Australian Digital Health Agency, it is difficult to determine whether this will be adequate in practice. Given the dire state of public opinion about this rollout, it's very sensible to install this extra safeguard with the legislation itself, as explicit protections on how the data can be accessed will help to ease many people's minds.

The second major change made in the bill is to ensure that once somebody opts out of the My Health Record system their record is permanently deleted. Currently, the information is locked down but retained for 30 years after the person's death. Again, this is an important change that will serve to ease a lot of disquiet in the community about those records living on in contravention of the direct and stated wish of the individual. As I mentioned earlier, Labor thinks there are some more dire problems that remain with the program, but we can see that these initial steps are indeed necessary to help close some security gap concerns people have raised and go some way towards helping to start to rebuild trust in the system.

In August, the Senate referred the bill to the Community Affairs Legislation Committee for inquiry. But, unfortunately, this inquiry will be limited to the provisions within the bill and not the bigger issues surrounding the program, of which there are many. This is why Labor has established a second inquiry to examine the issues that fall outside of the direct scope of the bill before us today. This will be a root and branch inquiry of the entire system: its rules, its regulations and its risks. It will be looking at the much broader issues, such as the government's decision to establish an opt-out system rather than the opt-in system that the former Labor government had set-up.

As we have seen, this has been nothing short of disastrous so far. There was virtually no attempt to explain it or educate people on how the system would work. People, understandably, became very suspicious when they learnt they had already signed up for something that they knew nothing about, especially when they started to learn about the potential privacy loopholes.

The inquiry will also consider the privacy and security settings to determine whether they are in fact adequate. In this regard, it will look closely at who will be able to access personal health data, with particular attention being paid to the conditions under which private companies can see this sensitive information. It will examine how women fleeing domestic violence can be protected and how employees can be guaranteed that having a My Health Record will not be able to lead to discriminatory treatment in the workplace. The government has said there are no problems here, but the risk that that isn't the case is simply too high.

As I mentioned earlier, Labor are a big supporter of electronic health record programs, in principle. Labor want to see My Health Record succeed. Open and honest inquiries are the best means of identifying and fixing issues before they become a serious problem. So it was very disappointing that the government referred to it as a 'stunt', given the importance of the subject matter and how much we stand to lose if we get it wrong. This inquiry's no stunt. It's a very real attempt to make a half-baked bill the best it can be. The committee will thoroughly interrogate these risks through the inquiry process and determine what is needed to be done to ensure the safety and privacy of every My Health Record user. Labor will look closely at the findings of the inquiry, which is due to report on 8 October. We will then decide on our final position and identify any further amendments that are needed to strengthen privacy protections and boost our confidence in the system.

In summary, in the hands of a competent government, e-health records have the potential to be a game changer for our health systems. They can reduce the stakes, improve outcomes and, indeed, save billions. Labor, I repeat, want the My Health Record to work—but this government has done such an utter botched job of it so far. It took an opt-in system which had been functioning effectively for years and turned it into a public outrage almost overnight. It tried to impose an opt-out model which presumed consent without giving thought to what this might mean for privacy or data security and then it was surprised when there was a public backlash. It's astonishing that the government should be surprised by the backlash. The government failed to consult, it failed to communicate and it failed to correct when it became abundantly clear what a debacle the rollout was turning into. But, most importantly, it failed to adequately consider the privacy and security of millions of Australian men, women and children when it made decisions around the treatment of their most personal medical data. This legislation fixes some very specific issues with the My Health Record rollout, but it doesn't go near fixing the damage the government has done to public confidence.

Steve Georganas (Hindmarsh, Australian Labor Party) Share this | Link to this | Hansard source

When Labor last considered the My Health Record in 2015, the shadow minister, the member for Ballarat, moved a second reading amendment to the government's bill. It called on the House to note the inadequacy of that bill in making real improvements through a national electronic health record system. The government voted that amendment down, and here we are again today. Labor raised concerns about the implementation, but we were prepared to give the government and the new Digital Health Agency a go, to get this right. But, from what we are reading in the media and hearing in this place, it is clear that the government has screwed this up. Instead of getting this right, right from the start, as we said—having a secure and efficient health record system—we have critics saying that there are real security concerns. And that's a real concern. This includes some honourable members on the government's own side and ranks, and now we find the government coming back to the chamber with legislation that's basically a clean-up exercise.

I want to be clear. We support a national digital health record. Labor established the personally controlled electronic health record under the leadership of the member for Sydney. If the government can eventually get this right, we believe that My Health Record could save money and, most importantly, save lives. Here's the problem: the government has already tarnished the My Health Record system. You only need to listen to programs such as Leon Byner in South Australia on FIVEaa or the ABC in the mornings in Adelaide to know that people are worried about the integrity of their information. Let's remember that this is the government that gave us the census fail and the robo-debt disaster—two IT projects that were completely messed up. Therefore, you can understand why people would not have the confidence that another massive project such as this will be tight and ensure that people's personal records don't leak out to different sectors of the community. I was very proud of the work I did as the member for Hindmarsh to expose the harassment techniques used by the minister's agencies through the robo-debt debacle. On top of that, Medicare and PBS data leaked, and the government spent millions outsourcing the National Cancer Screening Register to Telstra.

Why are we here again today with this legislation? Because in mid-July, when the opt-out period for My Health Record began, it became very clear that the government had bungled this vital program in two fundamental ways. The government seemed to have refused to communicate with the public about, first, the risks and benefits of the My Health Record and, second, what the actual opt-out system means in practice. The opt-out model is a big change from Labor's opt-in system. Every Australian will now get a My Health Record unless they tell the government they don't want one. The minister was woefully slow not just in explaining the benefits but also in reassuring that the public's records are safe on this. The system was called into doubt, eroding confidence in this particular system. So, what we needed was television ads and a public campaign, but of course the government refused to run any ads on TV. Some critics might argue that it's a waste of money to educate the public about such a fundamental change to health. But it's important that the public are aware and that they know what their rights are and what the benefits are of the Digital Health Agency and a system that will keep their health records. Wouldn't it be a surprise to learn that the Digital Health Agency spent $81 million on consultants last year alone, when some of this money could have gone towards educating the public, informing the public and notifying the public of what their rights are, of what they can and can't do and of the great benefits of a system like this. The minister wouldn't explain the benefits, public opposition from cyber commentators and privacy advocates grew, and the trust started to evaporate.

On this side of the House, we're trying to help the government. We're trying to assist, because we know how important this is, and we're trying to get this back on track. The legislation before us today tries to make two changes to the My Health Records Act 2012. First, the bill first amends the act to require a court order or a consumer's express consent to disclose health information from their My Health Record to law enforcement agencies or other government bodies. I today here join with the member for Ballarat by congratulating the AMA, the Royal Australian College of General Practitioners and others that have advocated for that exact policy to be enshrined in this legislation.

Firstly, the bill also sets out a range of conditions under which a judicial officer may make a court order to disclose health information, including that the disclosure is reasonably necessary and that the requested information is not available from any other source. It also exempts the Auditor-General, the ombudsman and the Information Commissioner from the requirement for a court order. The government argues that this is necessary because these agencies have unique responsibilities, and they have unique responsibilities to ensure the privacy and security of the My Health Record system.

Secondly, this bill amends the act to require the permanent deletion of health information for all consumers who opt out of the My Health Record. I can tell you that I've had more than a few inquiries from constituents about this, as I'm sure everyone in this House has had. The former president of the AMA, Dr Kerryn Phelps, has described the government's changes as 'woefully inadequate' and 'minor concessions'. I suppose defending on how things go in Wentworth, perhaps Dr Phelps might be able to come to this House and express her views on this very floor.

Something I've been worried about, and many of my colleagues have been concerned about, is that we need to make sure that the private health insurers are never given access to people's health records. The last thing we need, in this nation, in this country, is a class of Australians that is either uninsurable or facing rising premiums due to a perceived increased risk. We are not saying that this is going to happen with the way the legislation is currently written, but who knows what a future government could be capable of doing? This is a government that's hell-bent on outsourcing, just like we have seen with Centrelink call-centre staff, Home Affairs and a whole range of other things that have been outsourced. The public needs to understand that there's a huge price to pay when it comes to outsourcing; we pay for it with reduced integrity data. Our information can go overseas and into the hands of private companies with vested interests and perhaps nations overseas that have different types of democracies than we do. We should be supporting, of course, Australian workers and a strong public service here.

All that aside, there are massive advantages with having an integrated system, which the minister failed to promote when the backlash began. And this is where the government has failed. They needed to educate the public. They needed to inform the public about the importance of this system. Let's say you are interstate and fall ill or have an accident. You will be able to go to a hospital, GP, doctor or health provider and not explain your previous treatment. You may not know what your previous treatment was or you may not be conscious at the time, but all of your records will be there for every health professional to see so that they will be able to give you the treatment that you require. This, most importantly, as I said at the beginning of this speech, will save lives. It will save lives and it will assist people. You will be able to go anywhere in the country to see a doctor and not have to go through the same rigmarole of trying to explain what treatment you've had, what medication you're on and what doctors' consulting notes are saying. This will all be there. It will be a great assistance for the medical professional to be able to give the treatment that's required.

I have to say that only this government could take such a great policy and great idea, which would benefit our health system and would benefit Australians, and turn it into a fiasco. While doubts remain from experts in the health and IT sectors, we still firmly believe—and I certainly firmly believe—that the opt-out rollout should be suspended until all of these concerns are fully addressed and a new comprehensive, public information campaign is launched. And when I say 'a public campaign', we need TV ads, radio ads and advertisements in the newspapers. We need people to come out and talk about it. We need the minister himself to promote it and do all that he can to get that information out to the public so that people understand it. Most people, I think, would be fairly comfortable knowing that their data—their private information on health—is safe and cannot be leaked out to private entities, multinational companies or insurers. They would be comfortable knowing that, at a time of emergency when they're perhaps away from their local GP or not at their local hospital, when something goes wrong and they fall ill or have an accident, their health information, which is absolutely critical to their treatment, would be accessible to any health professional who can look at it, analyse it and know exactly what treatment that patient is getting or what new treatment he or she may be able to offer.

While doubts remain, as I said, for experts in the health and IT sectors, it's really important that a public information campaign is launched. It's the least that this government can do to make sure that we get this system right. It is so important, as I said, that this system be perfect. We need it to be perfect. And we know there was a public outcry at the start of the opt-out period for the My Health Record in mid-July. The government agreed to make those two changes and provide the privacy protections, and that's what we need. We need to ensure that the Australian public has absolute confidence that there is protection for that data, that none of that data will be leaked and, certainly, that none of that data will ever be outsourced to a private company that could perhaps then onsell it to someone else for a profit. You can just imagine the danger to Australian patients in terms of insurance, occupational health, compensation claims et cetera or in terms of employment, when people are applying for work. You can imagine, if an employer got hold of their entire health record, how that could adversely affect people. So we need the public to be absolutely guaranteed that this government is doing all that it can to protect that private information and that that private information will only be able to be accessed by medical professionals and only for the purpose of giving treatment to people.

It's a great thing. It's a fantastic thing to be able to go anywhere in the nation—and we are a nation, after all. We're not a section of six different countries with a couple of territories. People should be able to access their records at any health centre, at any GP or at any hospital anywhere in the country. And this, as I said earlier, will save lives, so we need to ensure that the government informs the public, lets them know how this will work, informs them of the importance of it, and absolutely guarantees that it is tight and that nothing will be leaked.

Justine Elliot (Richmond, Australian Labor Party) Share this | Link to this | Hansard source

I too rise to speak on the My Health Records Amendment (Strengthening Privacy) Bill 2018. It's always good to follow the member for Hindmarsh, who I know has a very strong commitment to providing health services, particularly for our elderly. As speakers from this side have made very clear, Labor supports eHealth and we support the concept of a My Health Record, but we don't support this government's constant bungling of this very important issue. And, to date, its handling of this matter has been a debacle.

The fact is that government is essentially all about priorities and choices. We, on this side of the House, often point out how wrong their choices are. And, in relation to eHealth, not only are their actions and their choices wrong, but they also reflect the very chaotic approach of this government to just about everything. This government is consumed with its internal fighting and has just caused such chaos. And it is really obvious when we look at this absolute eHealth debacle. The constant bungling and shambles reflect the current state of the government. It's a sign of their overall dysfunction and the ongoing muppet show that we keep hearing about.

It's important to note from the outset that this government does, in fact, have quite a woeful record when it comes to IT security and privacy and, indeed, a woeful record when it comes to rolling out many programs. They've botched the rollout of the NBN with their inferior networks and their patchwork of rollouts that's unworkable in many locations, especially in regional areas like mine. They're botching the rollout of the NDIS, a very important program. I get many complaints—

Luke Howarth (Petrie, Liberal Party) Share this | Link to this | Hansard source

Order! You've got to keep it relevant.

Justine Elliot (Richmond, Australian Labor Party) Share this | Link to this | Hansard source

Thank you, Mr Deputy Speaker. I was just highlighting some of the rollouts that have been botched by this government. A lot of it has not been implemented properly, so there certainly is a history of it, and My Health Record is another one of those botched rollouts.

When it comes to IT failures we also remember the massive failure when it came to the census, and the robodebt debacle. We've now also seen the latest IT disaster in My Health Record. So, it's important to look at it in the context of this government's record. Of course, it comes on top of this government's harsh cuts to health and hospitals. We've seen $700 million in cuts to hospitals across the nation—their cuts to Medicare. Those cuts particularly hurt regional areas.

Whilst it's been stated that we do agree to this bill, we have many strong concerns about the government's implementation of the My Health Record System. The fact is that nearly one million Australians have opted out of My Health Record following the government's botched rollout, proving that public trust in this important reform has been severely damaged. Indeed, under Labor questioning at a Senate committee, the Australian Digital Health Agency finally admitted that over 900,000 people have now opted out—900,000. And with two months to go in the opt-out period, that number is likely to rise to well over one million people. So, it's really clear how badly this rollout has undermined public support for a system that could deliver enormous benefits. Instead, we have massive problems, symptomatic of the government's massive problems.

It's because of these problems and concerns that Labor referred My Health Record to the Senate for an inquiry. We still firmly believe that the opt-out rollout should be suspended until all these concerns are fully addressed and a new, comprehensive public information campaign is launched. That's the proper way to approach this. The government promised such a campaign six weeks ago, but so far we've seen absolutely no trace of it. The government's responses have not been sufficient. The one-month extension of the opt-out period that the government has introduced is simply not good enough. This reform should not go any further until public trust has been restored, and the only way to do that is for the Senate to do its job and make sure that we actually get this legislation right. The government must do everything in its power to listen to the community concerns and to minimise the risk and security concerns—listen to the health experts, listen to the many people who've raised these issues.

As we've said, Labor supports a national digital health record, and we support e-health. We established a personally controlled electronic health record, because we knew that such personally controlled e-health records could really improve coordination between GPs, specialists, hospitals and pharmacies and could cut down on duplication errors in diagnosis, prescriptions and treatments. So, it is a really important and vital healthcare reform. It's especially beneficial for older people, who often have very complex health conditions and need to consult a variety of doctors and specialists. So, there is a great capacity and a great potential in e-health.

From my perspective in my electorate, I've had so many queries from locals who are concerned about the botched implementation. People are actually very distressed about the potential access to their health record. Again, particularly our seniors are very worried about their sensitive personal medical data. And what's the security? What are the provisions around it? These people are highly distressed, and I've been approached by many of them. They're really concerned about where their personal, private medical information will end up and why this government has not put sufficient safeguards in place.

So, the government's response is very disappointing. Indeed, this bungling also has a major impact for people in rural and regional Australia as well. And where is the National Party in speaking about this? Nowhere, when it comes to this. The reason it's going to have a big impact upon rural and regional areas is that they're more likely to need portability of their medical records when they travel to major cities for treatments that are unavailable where they live, so they really need them in the regions. Again, that's been raised in my area. People in my area often have to travel to the Gold Coast or Brisbane or Sydney. But those in rural and very rural areas can have very lengthy travel to get medical treatment, so they really need an effective and proper e-health system that they can rely on.

An e-health record implemented properly by a competent and functioning government can in fact deliver real and important healthcare reforms. It's for these reasons that Labor began delivering the e-health record system when we were last in government. It's important to note that when we were in government our system was opt-in, and we thought that was the right approach. Anyone who participated in e-health had to give informed consent and was fully informed as to what the e-health record was and what it involved. This government decided to change this to an opt-out system. But, in doing so, they never properly explained why they were doing it and never attempted to educate the public about this approach. They should have done that across a whole range of different media, but they didn't. The government has essentially refused to communicate with Australians about the risks and benefits of the My Health Record and what exactly the opt-out system means in practice.

The opt-out model is a very big change from Labor's opt-in system. It moves the system away from one of informed consent. In 2015, the government took the decision to move to the presumed consent model and provide a period in which people could choose to opt out of the system altogether. It's a very significant change in the healthcare relationship. To do that effectively really requires proper and consistent explanation and advertising to the Australian public of just how the system works, and none of that has happened. It is this failure to communicate this change properly and thoroughly that has fuelled a lot of the privacy and security concerns that Australians quite rightly have. This government's bungling now of the rollout of the opt-out period undermines public trust in this very important reform and the potential benefits it could bring.

This bill responds to some of the public anger about the scheme by making some of the changes that Labor welcomes, including requiring law enforcement and other government agencies to got a court order to enable access to the records. Firstly, this bill amends the act to require a court order or a patient's express consent in order to disclose health information from their My Health Record to law enforcement agencies or other government bodies. It is very important that this particular change to policy be enshrined in this legislation. The bill sets out a range of conditions under which a judicial officer may make such an order, including that the disclosure is reasonably necessary and that the requested information is not available from any other source. The bill exempts the Auditor-General, the Ombudsman and the Information Commissioner from the requirement for a court order.

Secondly, this bill amends the act to require the permanent deletion of health information for all consumers who opt out of My Health Record. The act currently requires the information that was held in the record to be locked down but retained until 30 years after the patient's death. A major issue that had been raised was: what exactly was happening after deleting the health information of people who opted out of the health record? So this bill does implement some good changes, but it was only following the massive public outcry at the start of the opt-out period for My Health Record in mid-July that the government actually agreed to make these two particular changes to improve privacy protections.

But we on this side of the House don't believe these changes go far enough, and they actually will not do enough to ease the community concerns about privacy and security. For example, a really important point is that this bill does nothing to address concerns that the My Health Record may indeed risk the safety of women who are fleeing from domestic violence situations or fleeing from abusive partners, and, indeed, it doesn't do anything to help children needing privacy from non-custodial parents. Many advocates have raised the particular concern that inappropriate access to My Health Records could actually facilitate family violence. For example, ex-partners or non-custodial parents could conceivably use the record to track the location and treatment of people. That's because the default settings give access to a child's My Health Record to both parents. In fact, they may even allow a non-custodial parent to create a record for a child that is no longer in their care. This is a major privacy and security issue. For example, if a woman and her children are fleeing an ex-partner, that partner could potentially track their location by viewing the doctors and pharmacies that they visit and, therefore, could quite easily narrow down the location of that ex-partner and children fleeing from domestic violence. This is a major concern that the government absolutely has to look at to ensure the security and privacy of the people involved.

We're also very concerned when it comes to workers' privacy. I know many people on this side have raised this concern. Indeed, I commend the unions who've rightly also raised issues. They are concerned that doctors who perform pre-employment or workers compensation assessments may potentially pass health information to employers, and those employers could then use this information to discriminate against employees—for example, on the basis of pre-existing medical conditions. This is obviously very unfair, and, quite rightly, many people have been encouraged to opt out because of the concerns that they have about that information being passed on. It really is an absolute breach of a person's security and of their sensitive medical data.

We need to see action on those particular points. As we've said, Labor remains of the view that the government should suspend the opt-out period until these and other issues can be effectively addressed. I have raised concerns about the impact of the government's bungling of the e-health record, particularly the impact on people in regional and rural Australia. I again say that we need to get this right for those people. When you're living in the regions and travelling long distances it can be vital to have access to a healthcare system like this. It is disappointing that, as always, the National Party are silent when it comes to the issues that are damaging people in rural and regional Australia. The impacts on the regions are very important, particularly considering this government's cuts to health and hospitals over the years. This government has failed rural and regional Australia on many fronts, particularly when it comes to health and hospitals.

As I've said many times, National Party choices hurt, especially when it comes to the lack of advocacy for an effective e-health record system for the regions. When we look at the health circumstances of regional, rural and remote Australia, we see that there are always considerably higher levels of chronic disease and a shortage of health professionals, on top of the government's cuts. It is even more important to have effective health systems in place so that people from the country can get access to services. That's why it's important to get e-health right for them. Whilst the National Party may not be advocating to improve e-health records, Labor does so consistently on this side of the House. We are the party of the country and will always advocate for better health systems for them, because we know how they need that in place.

The changes brought forward in this bill are necessary and important, but they are not enough. We need to see this Senate inquiry process as an opportunity for many Australians, particularly medical professionals, to have their say so we can work effectively towards fixing the existing problems in e-health. We need further protections for privacy and security in both the legislation and the policy, and we need a government committed to communicating with all Australians about the benefits and risks of My Health Record so that people can make an informed choice as to how they participate in the e-health system.

That particular method of communication can be through a whole range of media over a long period of time. People are very keen to understand and learn more about the benefits of e-health and what it means for them and their families. I think particularly older Australians—who, as I've said, often have very complex conditions that require seeing a number of medical professionals—were very keen to have this system in place, but now there is so much scepticism and hesitation because of the bungling by this government particularly around security and privacy that it has a lot to do in order to restore faith and trust so that people will again look at e-health and perhaps see the benefits that could be brought with it.

To do that we need a competent and functioning government—not the muppet show we have at the moment—that can put a proper e-health system in place so people have the trust that, when they access a number of health professionals, they won't be terrified as to where their health records will end up, but given the bungling of this government, a lot of work has to be done because of the shambles it is in. We have to find a way through this because e-health provides a great way to move into the future of healthcare systems. It will take a long time and a lot of commitment as to communication and the way this government speaks to people about the benefits of the e-health system, which can be done only if we see all the privacy and security provisions improved so we can have an effective and functioning e-health and My Health Record system for people to access.

Julian Hill (Bruce, Australian Labor Party) Share this | Link to this | Hansard source

By any measure the implementation of My Health Record is a debacle. It's a big call to say at the outset, but it is worse than the usual IT stuff-ups we've seen under this government. The ATO outage inconvenienced business and cost the economy millions. The census fail not only inconvenienced the whole of Australia and risked the integrity of the enormously important and expensive endeavour of the five-yearly census but also, relevant to this point, further undermined public trust in data, privacy and the government's IT ability. The NDIA IT stuff-up and robo-debt picking on older Australians were bad enough, but this is a critically important project to get right. It will save lives.

Labor strongly supports e-health and the concept of My Health Record. When it's done properly we hope to see not only tangible healthcare improvements in coordination between practitioners, access to records and saving lives in emergency settings but also money saved in the health system that we can use more productively in other areas to meet growing demand: fewer tests, better and quicker diagnoses, multidisciplinary practice enabled in a much lower-cost environment and fewer prescription errors. It is good if it's done right, but part of doing it right means public confidence. You cannot have a universal system like this without the public being confident in the security of the data, in terms of who can access it, their right to withdraw and all the other safeguards around it. On any reasonable measure the government has failed and continues to fail, because they are not hearing the community concern, and this bill covers only a few of the issues that need to be fixed to restore public confidence.

It is a surprise, member for Batman, that the health minister has not been promoted for this incompetence, because the current Prime Minister was promoted for his incompetence with the company tax cuts and the current Treasurer was promoted for his incompetence with the energy policy—they don't have an energy policy. It is a surprise that the health minister didn't run away from the health portfolio and become the deputy leader and the foreign minister, as Australia knows he wanted to, and nick off overseas. Alas, poor Yorick!

Labor began to deliver a health system when we were in government and that system was opt in. The government changed it to opt out. I understand there are sensible arguments that've been put by the profession for opting out. Fair enough; that's fine. They arrogantly and naively failed when making that decision to make the case to the people, and explain to the public and build confidence about why they were doing that. All of a sudden people woke up, because they hadn't made the case, and said: 'What, all my private medical data is going to be stored in a database? I didn't consent to that. Who can access it?' The minister had no ability to answer the questions. He hadn't thought it through.

The legislative and the regulatory foundation on which this opt-out system rests was the previous design done by Labor for a completely different system. It should not be a surprise to the government, even the minister—arrogant and out of touch that he is, no topic that he couldn't politicise, as we learn in question time every day—given the degradation of public trust in government, in institutions, in data and in privacy that people have opted out. They've botched the rollout.

I say to the House that I opted out in the first few days for three key reasons. The first reason is that I take this stuff seriously. The minister was completely unable to explain the safeguards and the access. To be unkind, he blatantly misled the public. If I were kinder I would say that he had no idea about the detail and just got it wrong—one or the other. He misled the public by pretending that some of the privacy safeguards were in legislation when they were not. They are in regulation that can be changed. The second reason was the issue of availability of information. The controls on the system to insurers were entirely unclear. If I change my mind at some point, like any other Australian, they wouldn't delete my data. The third reason is that I have a presumption, which I'll touch on in a moment, that the data will leak. I believe the data will leak. It will be hacked. That is inevitable in the current era, and there is no clarity on what rights people will have then.

In Singapore the Prime Minister's data was hacked, only a couple of months ago, in a hack to their system. It was a pointed and targeted attack, as he admitted. Singapore is known as having the best-performing public service in the entire world, and that's no exaggeration. The Singaporean public service—their data, their integrity, their systems and their policy development—is absolutely topnotch. People go from all over the world to study how they run their government there. I don't agree with all their policies. Our political systems may have some differences but they are a great partner overall. They are renowned for their public administration and even their system was hacked.

I took a conservative approach, as we've now learnt a million other Australians have, and that figure is climbing. We did offer to work with the government; bipartisanship is entirely desirable. But the minister didn't take that offer up—he knows best. It was public outcry, media pressure and stakeholders that forced this change. But his heart is not in the fix. I had a look at his second reading speech. He still doesn't get it. When introducing this bill, the minister was still claiming that there's nothing wrong. He said: 'There is actually no problem. The system is fine, but I'm going to introduce this bill that we don't even need.' He is doing it because apparently a million Australians were wrong, the doctors were wrong, the nurses were wrong, the lawyers were wrong, the consumer health forum was wrong and the media was wrong—even the member for Goldstein was wrong. Everyone was wrong except the minister.

The minister has decided to legislate to stop a nonproblem that will never happen, according to him. Despite this bill wasting our time, he remains true to his word and loyal to the old scheme. I think it's fair to say that this year the only thing he has been more loyal to than this scheme is Malcolm. I wonder, given that he actually doesn't believe the bill is needed as he told us, whether he'll even vote for his bill. We will find out.

Labor does believe that this bill is necessary, but it's premature. We've said clearly we have to build public confidence in this system. The benefits are enormous—for individuals' health care, to save lives and to save money—but it can only happen if we get it right. We have said we need a pause. We want to work with the government in a bipartisan way. We started this. The government is in charge now. We should do this together and get it right. But to do that, we have to pause it, suspend the rollout and work together. This bill has come before us before the Senate inquiry has even concluded. We haven't even heard what the stakeholders have said. It is not enough and it does not allay community concerns regarding privacy.

Let me quote Kerryn Phelps. If the polls are right, we are going to be hearing a lot more from Professor Kerryn Phelps in this place. She said the government's changes are 'woefully inadequate'. She is the former head of the Australian Medical Association. She said they are just 'minor concessions'.

The shadow minister raised a number of concerns, which have been touched on by other speakers. These are concerns that the bill does not address the real, legitimate issues around family violence. Unless the custodial parent decides to change it and convinces the Digital Health Agency—who apparently are now going to be experts in family violence disputes; good luck with that—to remove access for the non-custodial parent, the non-custodial parent can access the My Health Record. Otherwise, in family violence cases, where usually a woman—sometimes a man, but usually a woman—has fled a violent situation with the kids, the non-custodial parent can access the My Health Record to track down where they are. The government says, 'Oh, that's okay. She can remember to ring up the health agency,' because, of course, you're going to have that on your mind. You will get through on the number, fill out the right forms and press the right buttons when you're fleeing domestic violence. You can ring up and get the access removed, but it might be reinstated—but it might not.

We've heard about the issues of parental access to teenage records. They are sensitive issues. They need to be thought about carefully. The bill completely fails to address these issues. The previous speaker also spoke eloquently on the issue of concerns for workers. People going to a job want a basic health check to check if their back is okay, but all of a sudden the doctor might get other stuff from the medical record and tell the prospective employer. Where are the safeguards around that? This is bill does not address that. This is bad legislative process.

Again, I make the point that if the government is serious about fixing this, we extended the olive branch. I know we did, because I spoke to the shadow minister. I was really concerned about this, because I had constituent emails. I rang her. I said, 'This is a debacle. I'm going to opt out. What are we doing about this?' The shadow minister said, 'We've reached out to the minister. We want to work on this, but he is not up for it.' It is because he is too arrogant.

Let's hear more from Kerryn Phelps. We are going to hear more from Kerryn Phelps, no doubt. She said that we also need to guard against the future monetisation and privatisation of this system. The government, when you say the word 'privatisation', say, 'You're all making it up. It's terrible! We weren't going to privatise Medicare.' We know you were, because we saw the documents. We scared you off for now with the Australian people at the last election. But we are seeing the wholesale privatisation of Australia's visa system. That was all over the front page of the paper today. This is an ideological agenda. Whenever you can get their hands on a public service or something that is clearly in the public interest, to be done in the public sector by the Commonwealth, you try to privatise it. You push it out and think, 'Who can monetise this and make a profit out of it?' That's what you do; it's in your DNA. It's as clear as day that that's what will happen with this system at some point, under one of you in the future, if we don't put in these safeguards now. I agree with Professor Phelps on that point. We also need to think about what access the private health insurers might have. That's not dealt with clearly in this bill.

I will finish on the point I touched on earlier: it is my belief that the data will leak or be hacked. The minister's assures are naive at best. They are suggesting to people that there is no risk, this system is ironclad, it's completely foolproof and no-one is ever going to get into it. I don't think anyone in the community would believe that in the modern era. What happens then? It's not just an issue about politicians; it's an issue for ordinary Australians, not the celebrity sports star embarrassed in the paper routine. When stuff is leaked or hacked, in relation to ordinary Australians, can newspapers report on it? Can people's private medical records, if they're put on the internet, be circulated? Apparently, yes. There has been no consideration of what actually happens in the inevitable situation where this stuff occurs.

I understand the nothing-is-private world view. You do get that, particularly from younger people, who say, 'There's nothing interesting about me. I share everything on social media.' Fair enough; that's a world view. But in the real world there are many people in our community, in the Australian community, for whom real harm and real stigma are caused through the revelation of their private medical records. Mental health issues can stigmatise people and deny them employment, cause extreme embarrassment and further compound their mental health problems. Abortions, terminations, are deeply private matters. Before I opted in to this, I would want to be assured that these things had been thought about and that there were safeguards in place and that people in Australia knew that these things couldn't be reported for individuals in the media if they were leaked. The government has just denied this as a problem. There are diseases and chronic conditions that still carry stigma. They may have nothing to do with your ability to function in the workplace, in the community or in your family, but they carry enormous stigma. I used to watch Embarrassing Bodies on Foxtel, so I know that people do all sorts of things to their bodies that they'd rather remain private. Then there is plastic surgery and botox addiction. They grow or shrink certain bits of themselves. Have a look around the parliament—you never know! What about weekly sexual health checks, as one wag volunteering in the office said: Is that too often? Is that embarrassing? And then there's the case of the man in the Blue Mountains this week and certain surgery. These things are deeply private. When they get hacked, when they're leaked, they do not belong in a newspaper. They should not be able to be circulated. These safeguards should be put in place. The government should take seriously that we're not just standing here being politicians; we're speaking up for genuine views in the community while they're carrying on with their muppet show over there. Sitting here listening to them, there's a quote from The Muppet Show that seems rather apt:

Why do we always come here

I guess we'll never know

It's like a kind of torture

To have to watch the show

You're not taking this seriously. I believe that these things have to be looked at now, before this legislation passes the House or the parliament and before the rollout continues. It's critical if we're going to have real public confidence in this system, which we should all be seeking and which is so important. If we can get it right, we can build trust with the Australian people in the rollout of this system.

Rebekha Sharkie (Mayo, Centre Alliance) Share this | Link to this | Hansard source

I rise in support of the My Health Records Amendment (Strengthening Privacy) Bill 2018. The My Health Record is not a new initiative. The digital database already houses the medical records of over six million Australians. It's been around for years now, and it carries the handprints of those on both sides of this chamber. Presumably then there are sensible policy reasons behind the introduction of the My Health Record scheme, and I don't doubt that is true. Shortly I will discuss some of the benefits. But we also can't ignore the widely held and very real fear that this information—our most personal information—could be lost, stolen or used in a way that we didn't foresee and certainly didn't consent to. Over 900,000 people have opted out of the scheme since the formal opt-out period began in July. If the government is going to continue to push this policy forward, they need to convince the public that their data is safe, that the system is secure and that they, the individual, will always be the ones in control of their personal data.

Setting those concerns aside for a moment, I do want to touch on the three potential benefits to the community. First, the My Health Record initiative will give people the ability to access their medical records anywhere in Australia. It won't matter whether you're moving interstate for work or whether you're retired and following the sun north. Wherever you are, you should be able to access and update your records. Second, healthcare professionals will have instant access to your medical records. None of us want to contemplate serious or sudden illness or injury, but it does happen. If you live alone and you are immobile or unconscious, perhaps in an emergency room, the ability to access information about your medical history—everything from current medications to noted allergic reactions—could make all the difference. Too often we've seen X-rays and MRI scans and file notes disappear somewhere between the GP, the specialist consulting rooms and the hospital wards, so why wouldn't we take steps to streamline the process and reduce the risk of critical information going missing? That is assuming, of course, that the information being fed into the database is accurate in the first place, but that is another matter altogether.

Finally, the scheme would be one unifying point in a maze of patient and consumer information currently floating in and out of government organisations and agencies, such as Medicare, the PBS and the donor registry. The point I make is this: the information is already out there. It is already being collected in one way or another. This scheme just serves to tie all those loose ends together and create a central database. All of the benefits listed above are predicated on the central database—a one-stop shop for all of your personal and private information. It is precisely that aspect of the scheme that does make many of us, including me, quite uneasy. Some of the concerns have been addressed by the amendments proposed in the bill—namely, the restriction on law enforcement agencies accessing our information without consent or a court order, and the system operator no longer being able to store our data for 30 years. Instead, the system operator must delete all records immediately after a person elects to opt out of the scheme. These are sensible amendments to the scheme that are in line with community expectations, and they have my support.

Let me be clear. Just because I support the bill in this House today does not mean that I do not share the concerns of my constituents. I have very real doubts about the government's ability to keep our data secure, and I have no doubt that there are groups out there who see the database as a veritable goldmine of valuable information. I appreciate that the Minister for Health has said that this scheme is protected by some of the most stringent privacy legislation in the world, and that may be true, but will laws really deter those who are determined to crack into the database? The government may scoff at these fears, but they are widely held in the community and not without good reason. Let's take a look at a few recent examples across the globe.

Earlier this year in Singapore, over 1.5 million records were accessed, and the names, addresses, gender and date of birth were all copied without the knowledge or consent of the patients. It was described by the Singaporean government as a deliberate, targeted and well-planned attack. In 2015, Anthem, a major health insurance provider in the US, was targeted, and the records of approximately 79 million Americans were exposed. The UK also had its own difficulties with a centralised electronic health record. Worryingly, the data breach occurred not by cybercriminals but by pharmaceutical and insurance companies, who purchased the data for their own commercial advantage. But let's set aside these sophisticated cyberattacks for one moment and focus on how just the day-to-day operations of the scheme are going to impact on Australian families. I'm genuinely concerned that, without proper safeguards in place, this scheme will put victims of family violence and their children at risk. I listened to some of the comments made by the member for Bruce.

We need to ensure that the various agencies—courts, police and government departments—are able to liaise with one another and share critical information in a timely manner. I understand that the Digital Health Agency has established a family safety program to work with these stakeholders and manage risks associated with the inadvertent disclosure of private information to perpetrators of family violence. But the suggestions put forward to manage the risk of harm are, in my view, deficient and compromise the utility of the child's My Health Record. Options put forward to manage the risk to victims of family violence include suspending their child's record or simply not creating one in the first place. I understand that the government is aware of these limitations and is consulting with stakeholders to ensure that these concerns are addressed, but it's really not good enough that the government's response to such a complex issue is simply to tell one parent to suspend the My Health Record of their child.

I also echo the concerns highlighted by the Law Council of Australia during their appearance at the Senate inquiry last night that the current definition of parental responsibility under the act actually exposes the scheme to misuse by perpetrators of family violence. Under the Family Law Act, there is a difference between an order for parental responsibility and an order which provides for a parent to spend time with the child. A parent can have an order for parental responsibility without being granted an order to spend time with the child. Notwithstanding that a judge has decided that, because of a history of family violence, it is not in the best interests of the child to spend time with the parent, the parent will still be able to access the child's health record. It is imperative that this scheme does not operate in a vacuum and that this act and, specifically, the definitions used around care arrangements are consistent with the principles and provisions of the Family Law Act. There are a number of very serious issues around privacy and security that we are yet to resolve.

There is no doubt that these issues require further scrutiny. In saying that, I hope the comments I've made during the course of my speech on this debate don't frighten others away from the scheme. There are many people out there who may genuinely benefit from My Health Record. The point is that it has to be an informed decision. Every person will need to think about their own personal circumstances and decide whether the risks outweigh the rewards. But for many Australians that won't happen, not because they choose for it not to, but because they simply aren't aware of the fact that a My Health Record has been created in their name. Under the government's opt-out system, it won't matter that you didn't know. It won't matter that, if you had known, you would have rejected the idea. It won't matter that you didn't realise the opt-out time frame had expired. All that matters is that your most personal and private information is being collected by the government and you did nothing to stop them.

I do have some sympathy for the government. I can't imagine that getting accurate information out into the community was an easy task, and so an opt-out scheme would no doubt significantly increase the number of people captured under the scheme, but the information being collected is the clearest example of private and personal information. When we are concerning ourselves with this sort of information, I think we need to make sure that those of us who are handing over our medical histories to the mercy of a government server are doing so with our eyes wide open. In conclusion, I offer my support to this bill, but it is qualified support. I want to make it clear that I will continue to speak with my Senate colleagues to determine what, if any, amendments should be made following the release of the committee report.

Andrew Wallace (Fisher, Liberal Party) Share this | Link to this | Hansard source

Modern health care is being transformed by new research, truly integrated approaches and new technologies. The Sunshine Coast is at the forefront of these developments. Our emerging healthcare hub is a perfect example of how this blend of technology and medicine is the future. The Thompson Institute, part funded by $5 million from this coalition government—our government—brings together psychiatry and counselling with cutting edge MRI technology to understand the physical mechanisms that lie behind mental illness. The research programs being funded by our government at the Thompson Institute will use detailed scans to understand a longitudinal study of the physical changes in the brain which are driving serious mental illness among young people and people with dementia in my community. I'm optimistic that, working closely with the Health Minister, I'll be able to secure funding in the future to expand this work to look at the physical changes which underlie post-traumatic stress disorder for our some 15,000 veterans on the Sunshine Coast, and our emergency service workers and those who did work in emergency service work.

Away from the Thompson Institute, we're seeing integrated healthcare approaches in the federally funded eating disorder pilot now under way in my electorate. With $3.2 million in federal support, the local Sunshine Coast primary health network is working closely with the Butterfly Foundation to create a new integrated and in-depth approach to treating these insidious conditions. In Mooloolah Valley, a beautiful part of my electorate, another organisation, endED, has teamed up with the Butterfly Foundation, with $1.5 million in federal government support—our government support—to provide an integrated solution for the treatment of eating disorders.

Mr Deputy Speaker, I know that you're going to find this difficult to believe, but there is not one residential facility in Australia that caters for and treats people suffering from eating disorders. But there will be one, very shortly, in my electorate of Fisher, thanks to our government's contribution. Our $1.5 million contribution of taxpayers' money will help those who are suffering from these terrible diseases. I want to take this opportunity to congratulate and thank endED's founders, Mark and Gay Forbes, who are absolutely leading the way and leading the charge on the treatment of eating disorders in Australia. Along with this bill, when it becomes law, they're going to ensure that all of a patient's information is available to the practitioners that are working to aid that patient's recovery so the treatment can be consistent but flexible and responsive no matter which practitioner is available at the time.

Towering over all of these projects is the coast's new $1.8 billion Sunshine Coast University Hospital. A cutting-edge facility with all of the latest equipment, this hospital provides the central local nexus around which patients' treatment can cluster, giving them consistent care without the need to travel to Brisbane. In microcosm, what is going on with our emerging 21st century health hub on the Sunshine Coast is a clear example of the same benefits that will be derived nationally from the My Health Record.

My Health Record mixes digital technology with the work of everyday clinicians to create a more powerful understanding of a patient's condition. By creating a single hub of information from which different treating clinicians can draw, it ensures that treatment can be consistent but flexible and adaptive. It allows patients to go to exactly the right practitioners for them and have their information follow them, accessible at just a moment's notice. Like endED Butterfly House, My Health Record will help to provide a more supportive and less stressful process of treatment by preventing the need for patients to remember all of their treatment history and test results or to explain their condition to new doctors and new nurses again and again. Equally, by providing a central repository of information, it helps to prevent any pertinent facts being lost and helps to stop inappropriate treatments being inadvertently delivered.

It is perhaps no surprise, then, that health professionals in Australia are united on the value of the My Health Record in improving patient outcomes and avoiding preventable deaths. The president of the Australian Medical Association, Dr Tony Bartone, said 'The electronic record can save lives.' He has described how the earlier version of the My Health Record saved the life of a Brisbane GP's patient. With access to the information that was in the patient's electronic record, the hospital's doctors were able to make the decision not to give the diabetic patient, who was in a coma, the usual antibiotic that would have been administered for sepsis. Had the hospital delivered that antibiotic, the patient would have had a severe reaction and most likely would have died. As Dr Bartone put it, 'That is a powerful example of the value of an electronic health record.'

This week, we have rightly been speaking a great deal about aged care. At this time, we should be doing all that we can to improve the provision of aged-care services in Australia and, in this, the My Health Record will also make a difference. As Leading Age Services Australia's CEO Sean Rooney said:

By enabling information sharing between the various parts of the Australian health system, including aged care, digital health has the potential to enable programs and initiatives that integrate care, wrapping it around the needs of patients …

Patient focused care is what we need in aged care and throughout the healthcare system. And that is what the My Health Record delivers. Victorian Healthcare Association CEO, Tom Symondson, has even gone so far as to implore Australians to remain in the system and has said that those who opt out will miss out on the chance for better treatment.

So the clinical value of a My Health Record is clear. But with so much personal information stored, it is understandable that individuals have had concerns about their privacy. In the original design of the system, the government took comprehensive steps to ensure that records would stay secure. All data on the system is stored in Australia, protected by high-grade security protocols. This data is not stored in a data centre overseas. The system has been regularly tested throughout by our nation's top cybersecurity experts, who constantly look for weaknesses that could be exploited. It is protected by encryption, secure gateways and firewalls, authentication mechanisms and malicious content filtering. The Australian Digital Health Agency's Cyber Security Centre constantly monitors for external threats and works closely with the Australian Cyber Security Centre, the Australian Signals Directorate and our government to deal with any suspicious activity.

At an individual level, the existing scheme gives Australians considerable control over who can see their personal information. Individuals can set their own access controls to say which practitioners can see which information and which documents. They can choose whether or not particular information goes into their My Health Record at all, and they can choose to receive notifications if a new practitioner accesses their information. So they will be put in control of their information. They can choose whether the information can be used for research or not and, in the final resort, they can choose to have their My Health Record deleted.

These precautions and more are why, for the past six years, with six million Australians already registered on and benefitting from the system, there has not been a single security breach. Let me just say that again: for the past six years, with six million Australians already registered on and benefitting from the system, there has not been a single security breach. Unfortunately, some in this place want to try and cause fear and havoc. Not a single breach.

However, we know how important it is that the public has confidence in this system, and we have listened to that feedback. In particular, some members of the public and privacy advocates have expressed reasonable concerns over the fact that law enforcement agencies and other government departments could potentially access a person's sensitive health records for purposes other than treatment without a proper judicial process. Others have expressed the concern that section 17 of the My Health Records Act requires the system operator to retain some personal information for 30 years after the death of an individual on My Health Record, even if that individual has requested that their record be deleted. This bill therefore makes two simple but critical amendments to the procedures surrounding the system to make explicit and unambiguous the duties that exist on the My Health Record system operator when it comes to handling personal information. The bill will remove the ability of the system operator, currently the Australian Digital Health Agency, to disclose health information to law enforcement agencies and other government bodies without a court order or the patient's express consent.

Although this has been the stated policy of the current system operated to date, it has remained an area of possible future dispute, and this bill lays that possibility to rest permanently. The bill will also require the system operator to delete health information it holds for any consumer who has ever cancelled their My Health Record. This will override the requirement to retain information for 30 years after an individual's death where they have requested that their record be removed.

The amendments can be briefly and simply described. However, these practical and concise changes have been widely welcomed by the community and endorsed by Australia's leading public advocates for privacy and human rights. Acting Information Commissioner and Acting Privacy Commissioner Angelene Falk welcomed the proposals, which she stated would 'give the community greater control over their health information' and 'create certainty and enhance privacy safeguards for all Australians'. Australia's Human Rights Commissioner Edward Santow echoed these sentiments, saying that these changes 'will give greater certainty about how individuals' health information will be used in the My Health Record system'.

I'd encourage all my constituents in Fisher to find out more about My Health Record before the new extended opt-out deadline of 15 November this year. I encourage them to be fully informed, to understand the system and the privacy controls available to them. And I encourage them, when they are fully informed, to stay opted into the system, to enjoy the significant benefits that it will bring. If any of my constituents are unable to find the information that they need in order to make an informed choice, my office and I will be very happy to answer any questions that they may have. It's important that we grow and maintain public confidence in the My Health Record system. The system will avoid unnecessary hospital admissions, reduce overdoses and allergic reactions, better coordinate care and facilitate better treatment decisions. In the context of the 21st century medicine going on on the Sunshine Coast and all over Australia today, it is the right solution and will only become more necessary over time.

Andrew Laming (Bowman, Liberal Party) Share this | Link to this | Hansard source

I follow the member for Fisher, who speaks on behalf of one of the most advanced hospitals in Queensland, the Sunshine Coast Hospital, in the middle of his electorate, down to the bayside of Brisbane, where I represent the seat of Bowman and where there is extremely strong support for the medical health record. It's been an incredibly long journey. It goes back I think to the late 1990s, when the major medical groups recognised the obvious importance of using initially computerised records and then the internet to store incredibly important medical data.

I guess people forget that for a long time we've been ceding our personal health information to government-funded professionals. Medicare-funded doctors hold paper records, and they're easily accessible to the entire staff of a medical practice, which presents significant security risks in and of itself. We tend to discount that, and we now make this proposal that, like every other developed country, we need to move to a situation where we can absolutely store these records in perpetuity with patient consent so that the key and appropriate people can access that information. And of course as we've moved forward there's been this primary health record development, a central holding of records. Obviously Apple has moved in parallel to use their health app platform on their devices to allow complete patient control of health information that they choose to place in the device. That's actually a counter approach being pushed by Apple, which I think is completely reasonable. The ability to opt in to having other parties sharing access to your health information is a very important power.

What these two have in common is an incredible increase in the amount of patients' central control over their own health information. Having worked in medicine since 1989, I can remember that at every turn there have been squabbles and debates as beleaguered patients have attempted just to get their own health records from their GPs. Simply changing from one GP to another was, for many, a very stressful process. We forget that patients in many cases had lost complete control of their own health information because of some very unfortunate event whereby the relationship with the medical practice that they'd been attending had broken down. So, we tend to almost forget the difficulties of the status quo when proposing this new approach.

The most disappointing element of the debate today will probably be that, once again, the once great Labor Party and party of health reform has increasingly become paralysed in its Medicare based defence. It's very hard to get the Labor Party, once the great party of social reform, to be in any way imaginative anymore. To see them nickel-and-diming these important legislative amendments today is pretty disappointing. I would have expected a Labor Party opposition health spokesperson to come in here today and say, 'This could have been tidied up much better, but let's face it: where we have to head as a developed economy is some safe repository, with the best technology available protecting that information from the obvious misuse that we are fearful of—that is, unauthorised access by work cover and private insurers.' We all share those concerns. I think we are all united in knowing that the Australian Digital Health Agency is absolutely taking the best advice from other countries that have tried these elements and have built in the best we can do. That's all you can ask of a government. To see the series of barely sublethal, critical comments from the opposition is pretty disappointing for anyone who's worked in the health sector. And I'm delighted there is finally a doctor on the other side who maintains his registration and there is a pharmacist on the other side. So slowly the Labor Party is running out of excuses for not having a coherent approach to something as simple as an electronic health record.

Those who have worked in the sector for many years will appreciate there are literally billions of dollars of health costs—not millions or hundreds of dollars but billions—through poor communication within an advanced medical system. I don't have to explain that we've got the four platforms—the four tiers of Medicare, the health state system, the federal government running Medicare and then councils getting involved in vaccination. There are providers all over the place. There is health data being collected in schools and in childcare centres. Every one of these is a basic case, an almost unarguable case, for doing the very best we can. We don't begrudge an opposition keeping a government honest, but we need to remember that 10 years ago the shoe was on the other foot. There was an apt opt-in arrangement and the then Labor government couldn't get any engagement. No matter how many people they popped in shopping centres handing out free apples, they couldn't get enough people to go onto this electronic health record. That is why we have reached the point today of an opt-out arrangement, and I hope a bit later to explain that we have done that very efficiently.

As I walk around my electorate, the first thing I notice is that most people don't care overly about their health information. They don't know a great deal about it. They presume it's tucked away safely somewhere. To be honest, in my electorate, just over two per cent of people have opted out. That's a tiny proportion of a community. So let's be entirely honest here that, as we move into this increasingly online era, younger Australians don't hold these completely obsessive privacy concerns. They take a far more balanced approach to information. Young people are increasingly asking: 'What's in it for me? What's the net balance? I'm quite happy to throw heaps of personal information online as long as there's something coming back for me.'

It's hard to imagine a more compelling case than when you are unconscious and in an emergency situation, with well-meaning health professionals around you who need to know more than just guessing your age, getting your blood pressure and then looking round and asking, 'Does anyone know this person?' We need to get to a point where it can be quite rapid, that once you have identified an individual very quickly there are a series of gates that allow health professionals and emergency workers to access basic information. It's complete common sense. It's hard to imagine how many incredible tragedies could be avoided by the provision of basic information in this way. Having worked in a public hospital, I understand that at many times staff wish they could just access GP information. You don't even need to begin to pick out just how much money is spent on repeat investigations because one health provider over there did one but the information is not online. It may even be online but not available to the hospital and so the tests are all done again. The cost of this is hundreds of millions of dollars.

In any other case, this would be an overwhelming argument for moving ahead as the technology allows us to. The system has been well invested in. We have learnt the lessons from the UK where huge amounts of money was invested—in many cases, wrongly—by engaging large information providers to put together these systems which ultimately failed and the UK government had to back out of. We are the beneficiary, almost leapfrogging places like Europe, because we have waited to get a system that works and have applied it.

Today is about disclosure, deletion and delay. In delaying the opt-out period until November 15 we are giving Australians even more time not to feel rushed about that decision to opt out. What does opt out mean? Opt-out means you can say, 'I do not want to have the empty electronic shell record become a reality next year.' After the department and the Digital Health Agency have worked through all of those opt-out requests and have ensured that those individuals will not be entering the system then they will create these empty shells upon which information can be loaded. After that period, Mr Deputy Speaker Andrews—welcome to the chamber—either the patient or the primary carer of that individual, who already has all the data, can place it into that electronic repository in that file. The information is already held by that same individual; the shell is simply populated by that carer, in this case a family physician. That's a fairly routine process that will happen as of next year.

The decision around deletion was one of genuine concern, and I'm glad to see that this legislation is addressing it. A number of people generally, even since 2012, have found that somehow they've ended up with a health record through a well-meaning relative or a consultation with a doctor they can no longer remember, and they hold great reservations and don't want that record to exist. All of their health information now, as a result of this legislation, can be completely wiped from that record. We note there is still archival law that requires this information to be held until 30 years after death or for 130 years. These are long periods, but let's be honest: this information was going to be sitting somewhere in a file, with way more government funded employees having potential access to paper records than do in an electronic system. The last point to note is that anyone attempting to access the system leaves a fingerprint allowing them to be digitally identified and for action to be taken, so there are many strengths to having this digital system.

The last thing this legislation does, which has been mentioned by a number of speakers before, is to up the requirements around disclosure of information rather than leaving it to the Digital Health Agency—whom I do not want to impugn; they've done an incredible job, since 2012, of not releasing a single scintilla of health information to anyone. That's not bad—it's a Bradman-like record on consistency—but people aren't satisfied with that; they want to go to the next step and have an absolute guarantee that no information in the future will ever be released without a court order or a warrant. That's a genuine, judicially assessed process to determine that this information is absolutely in the public interest before it's released.

At this point the Labor Party are dancing right around the margins of the debate. Having been the party with the bravery to bring an electronic health record concept forward—and here we are finishing the job without taking cheap shots—they are raising concerns that at some point in the future a minister may be able to delegate an authority to change the way in which information is disclosed. These requirements exist in almost every form of legislation that comes through this place regarding the holding of important information. Quite clearly we have the need for basic, serious examples of where there are concerns with how things have been structured. I don't think that has been put articulately by anyone who is opposing this legislation. People have these vague, indirect concerns about a little bit of information possibly being in a record that is still around in 30 years time, but they completely forget the status quo is that our health information, like our personal information, has been spread generously around the public domain often without citizens even realising.

The stakes around health information are enormous. We have moved now beyond the era of blockbuster drugs into increasingly tailored, incredibly expensive cures that work only in identified individuals. That's going to mean we will increasingly be reliant on higher forms of evidence derived from better designed trials that have specific subpopulations of people with particular genetic backgrounds. Some cancer treatments work on this kind of genotype and not on that kind, and nobody knows any of that until we've done these kinds of tests. Most Australians, I'm absolutely confident, would willingly share their data for the purposes of developing a better cure, but that simply cannot happen without an electronic health record.

We've had debates over the weekend on the tragic circumstances around the Defqon.1 music festival, where there were two tragic fatalities due to drug overdoses and another 17 people were treated for collapses and another 700 for unrelated reasons. That is a real disaster for those festival organisers. While we're all waiting on the toxicology results, and we pass our condolences on to the distraught families in this incredibly tough time for them, ultimately we need to ask the question about the immediate availability of health information in those circumstances. I can only imagine that many of those first responders would have been emergency and ambulance trained, and there would have been doctors on site. I can say very confidently that they would have been highly trained and ready for some of the toughest circumstances, but the lack of information would be incredibly difficult for them. There are young people with diabetes or other chronic diseases, all of which can be confused with drug overdoses. Then we have this difficult issue that they could have collapsed from the drug itself, the MDMA, or they could have collapsed from impurities. There is this great debate about whether drug testing should be allowed in these festivals. Increasingly, I think people are stepping away from the precipice and saying we need the evidence that drug testing is going to make a difference, particularly in the absence of informed consent inside a festival, where many people are intoxicated or using drugs at the time that they're bringing them in for testing. What people genuinely want in these circumstances is adequate information. The electronic health record offers us that opportunity.

Few would dispute that Australia has among the top handful of health systems in the world, with the most highly trained health professionals, so we need to make sure that we have a purpose-built, fit-to-last electronic health record that can do the job for this great nation. The Medicare system has a GP centred approach. It's one that we're extremely proud of and will defend. We defend the team based arrangements that exist for the highest need Australians, because the average Australian visits a doctor around seven times a year and accesses way more Medicare services than that. When that occurs, Australians who wish to will have all of that information on a medical health record.

Luke Howarth (Petrie, Liberal Party) Share this | Link to this | Hansard source

I'm really pleased to be able to participate in the debate tonight on the My Health Records Amendment (Strengthening Privacy) Bill 2018. It's always good to follow the member for Bowman, a doctor himself—an ophthalmologist. I'm really pleased to have Dr Andrew Laming, the member for Bowman, in this parliament and work alongside him, because he knows a lot about health, as you heard from his speech just then. It's very good to have him in this parliament.

This is important legislation that will indeed strengthen our health system. I congratulate the minister for his leadership and dedication to ensuring Australians benefit from the My Health Record. This legislation is about consumers having control. I planned to speak on this legislation yesterday, but unfortunately I was unwell. I actually had to go to emergency yesterday because I had high blood pressure and had to get that sorted out and checked out. But, if I had had the My Health Record, when I was at emergency I would have been able to say: 'Look, here's my history. This is my medical history. These are the doctors I've seen. This is the medication I've taken before.' It certainly would make it a lot easier for people in my electorate and for patients right around Australia. When they're seeing a doctor interstate or going into emergency at a hospital interstate or even outside the city where they live, in a different part of their state, it would make it a lot easier than having to repeat their health records over and over again. Of course, as a consumer and the person who can run the My Health Record, you can decide what goes into it and what is not in it. So I say to the people in my electorate: as a consumer, you have control, and I would encourage you to sign up. The My Health Record benefits each and every consumer in three ways. Firstly, there is access to your key health information in an emergency, as I've just described. Secondly, it is a convenient snapshot of your health. You can go in and check and see exactly what's in there. You can print it out and carry it with you, if you want to, or it's there online. Thirdly and most importantly, it gives you control over your records. You decide what goes into your record.

The first benefit of eHealth, of course, is access to records in an emergency, and that will ensure that, if you are in an emergency, your medical records can be accessed very quickly. And, if you look at what happens, our healthcare costs across the board—not only as a federal government but for different state governments and through private health insurance—continue to go up. Obviously, there is a lot of paperwork and a lot of record keeping involved, and, as you can imagine, this system working properly with all Australians that want to be in it signing up to it will save a lot of red tape and time for health professionals in emergency wards. We know that state government hospitals have quite busy emergency wards. Often the doctor can spend half an hour with a patient, but then they can spend another half an hour doing the paperwork, whereas if they've got these My Health Records and they have a snapshot of what medication you're being prescribed by your home GP or what previous surgery you've had done, that would save a lot of time and may actually bring down costs, not just for governments but in the private health sector as well.

Unfortunately, even the healthiest of us, as we approach middle age, seem to be on a myriad of drugs, and each time we go to a GP, there is a new or improved version of that drug. If you were admitted to hospital unconscious, would your partner or your family know what drugs you were on or, importantly, what dosage of drugs you were taking? All of these things can take time when time might be of the essence. In a medical emergency, authorised healthcare providers will be able to check your health information, such as allergies, medicines and immunisations. This will save time, and that time just might save your life. The eHealth records will ensure that you don't have to have extra tests and that medical practitioners can focus on giving you the medical assistance you need. That's the first benefit.

The second benefit is that these records are a convenient snapshot of your health. Fortunately, emergencies don't happen every day for most of us, and it is that everyday access to your records that is important. When you go to see a GP, the GP needs to be aware of your medical history. Not all of us always see the same doctor, and each time we see a doctor we have to go through and talk about our medical history. Again, we have to know what drugs we are on and what the dosage is. We also have to go through our history of what operations we had and when. Fortunately, in my own case, I've actually been seeing the same doctor since I was a baby. Not many Australians would be able to say that, but my doctor, Dr Kerry Curtin, had his own practice in Bracken Ridge in my electorate where I grew up. He's now moved to SmartClinics at Carseldine, just near the Bald Hills Bunnings, and I followed him there, so I've been going to the same doctor since I was a child, and now I'm in my mid-40s. Dr Curtin is very good, and I want to take this opportunity to thank him for the great health service that he has given not just me but also many people in my electorate. Dr Curtin would probably be around 70 years of age now, and I would also say to doctors who want to continue to work into their 70s: thank you for the wisdom that you provide and also for passing on your knowledge to younger doctors who are coming through. Because of the experience that I've had with my own doctor, I think health ministers need to make sure that doctors who are older—over 60—stay in the workforce should they choose to do so, because they have an important role to play.

I also would say to people that, as the years pass, for operations that we thought we might have had five years ago it suddenly becomes 10 years. It is important that the GP has a chronological list of operations and when a particular disease or condition was discovered. Many in the community don't have a long list of chronic or acute conditions. However, it is just as important for them when they see the GP to ensure that they don't leave anything out of their history.

As I said before, not everyone sees the same GP every time. A lot of people go to a clinic. It might be a large bulk-billing practice where they attend the same clinic but see a different doctor each time, or they may even attend a different clinic as they change addresses and so forth. Again, this access is about control. You know that e-health has your records and you have security in knowing that your records are there when you need them, either during a GP visit or in an emergency. The third benefit I mentioned was the control over your record, and I come back to the issue of control. You do indeed have control over your record. You, the consumer, have the power and control over your personal medical information. And you can cancel your My Health Record whenever you like. You have the power to decide.

Today I had a young couple from my electorate of Petrie who were visiting Canberra, Robert and his wife. They were enjoying a bit of a break for the week and came into parliament today. I was able to show them around a little. I invited them to come in and watch question time and I met with them beforehand. I said to Robert that I was going to speak on this legislation in the House tonight, and I asked him what he thought about My Health Records. Without a hesitation he said: 'It's great. I'm a pretty healthy person, Luke, but I have been to many GPs. I go to the local clinics near to me, and if it's a clinic I haven't been to before, I have to go through my medical history.' Robert continued—and these are his words—'I think it's great. It's about control. I have control over my records, not some suburban doctor who might not have the most up-to-date IT system. My records might just be in a filing cabinet, for all I know. My Health Record will all be together and I can view it and restrict the information where I deem necessary. Yes, it is about control.' So, that was some good personal feedback from constituents in my electorate. And Robert is right: he will have control of his own health records.

Apart from the three benefits I've mentioned tonight, there is an also important aspect of this legislation that I will touch on while I have the time, and that is security of the e-health records. Security, of course, can be an issue around IT, not just in the Public Service but in the private sector as well. In terms of the private sector, I received an email from one of my own doctors whom I had been to for a check-up, a specialist, and got an email to inform not just me but other patients that records had been accessed. So, it is important. It wasn't anything that I was particularly worried about, but security is important.

I've also heard the debate about the fact that people might have been worried about the Big Brother approach to the information being held by government. Some members who have spoken on this bill tonight spoke about 900,000 Australians who decided to opt out, once it was changed from opt-in. It's good that there are almost six million people who have opted into My Health Record. But 900,000, to me, in a population of 25 million, doesn't sound unreasonable. I would expect that 10 per cent or even 20 per cent of people in my electorate would say: 'Well, I'd rather not have my records there. I'm concerned about what the government's doing or what people will have access to.' As someone who has now worked in government as a member of parliament, I'd say, 'Look, don't worry about it. The health minister doesn't have time to worry about what John Smith is doing or about his records.' But I do understand that people do want to opt out, and I think that's perfectly reasonable for the people who want to do that. It is up to them. I would encourage people to join, opt in and take advantage of the My Health Records. But, if they choose to opt out, then they have that option. People should always have the choice.

Members opposite have also raised concerns about partner separation, which is valid. In my experience, judging by the number of people who I've spoken to in family breakdown who have come into my office, it seems that ex-partners who want to can always easily find addresses, which isn't a good thing. But I think that this system is quite secure and I would encourage people not to be concerned about that in particular. It's interesting that members opposite also want us to spend millions on a government advertising scheme. I'm happy to raise that with the health minister, the Hon. Greg Hunt. He may want to run an Australian government funded advertising scheme for this, but, because there have been quite a few members from the Labor Party tonight who have encouraged us to run a government funded scheme on this issue, I say to members opposite: if we do that, then don't say, 'Oh, no. That's all about political advertising.'

In conclusion, as I've said, almost six million people have signed up. Only three per cent of the population have opted out. I encourage people in my electorate to get onto the my.gov.au website and create an account. There'll be some ID questions there. You'll need a user name, an email and a password. I encourage you to do that and take control. It's not that hard to do, but, if you do have an issue and you live in my electorate, feel free to call or email my office. I'd be very happy to assist. If you live outside my electorate, contact one of the 12 senators in Queensland, and it is the same throughout every state. I'm very pleased to be able to support this bill.

John Alexander (Bennelong, Liberal Party) Share this | Link to this | Hansard source

I rise tonight in support of this important bill. The My Health Records Amendment (Strengthening Privacy) Bill 2018 will amend the My Health Records Act 2012 to strengthen its privacy protections. The changes remove any doubt as to how seriously the Australian government takes the security of information stored in the My Health Record system. This security is paramount. It is imperative that people's health records are kept private and secure. It's also critical that people's healthcare services are the best they can be and that the system continuously improves. The system is already delivering important health and electronic outcomes for Australians through avoided hospital admissions, fewer adverse drug events, reduced duplication of tests, better coordination of care for people seeing multiple healthcare providers and better-informed treatment decisions. These outcomes make the system work better for Australians.

The president of the AMA, Mr Tony Bartone, said in The Age newspaper on 23 July 2018:

The electronic record can save lives. A Brisbane GP recently told a Senate inquiry how the earlier version of the My Health Record saved the life of one of his patients.

He said that the hospital was able to access the information that was in that electronic record and made the decision not give the diabetic patient, who was in a coma, the usual antibiotic that would have been administered for sepsis. This person had a severe anaphylactic allergy to that antibiotic and, if it had been given, would have been killed. That is a powerful example of the value of an electronic health record.

Already six million Australians have a My Health Record, and the system has been operating without incident since 2012.

Notwithstanding the performance of the system to date and that its strong security and privacy controls were developed in close consultation with stakeholders, it's important that we move quickly to reassure the public of the government's commitment to the privacy of each individual's health information. The bill will remove the ability of the system operator—in this case, the Australian Digital Health Agency—to disclose health information to law enforcement agencies or other government bodies without a court order or the consumer's express consent. The bill will also require the system operator to delete health information it holds for any consumer who has ever cancelled their My Health Record. To support these amendments, the opt-out period has been extended by a month, to 15 November 2018. This provides time for individuals to discuss My Health Record with their trusted healthcare provider and then decide for themselves whether they want a My Health Record at this point in time.

The president-elect of the Royal Australian College of General Practitioners, Dr Harry Nespolon, supports the amendment strongly. On 31 July 2018 he said the following in a press release:

The Royal Australian College of General Practitioners … commends the Federal Government's willingness to strengthen the privacy provisions under the My Health Record Act …

… … …

Changes to the legislation that remove any questions about who may be able to access the records ensure that the records will be able to be used in line with the RACGP's position statement on My Health Records.

Choice is central to a health records system that will remain sustainable and usable into the future. People will be able to set their own access controls to limit access to their whole My Health Record or to a particular document in it. They can choose what information goes in. They can choose to be notified if certain things occur, such as if someone new accesses it, and they can choose whether their de-identified information can be used for research or public health purposes. And, importantly, they can choose at any time to cancel their My Health Record. This choice is important for stakeholders such as the Office of the Australian Information Commissioner's Acting Australian Information Commissioner and Acting Privacy Commissioner, Angelene Falk. On 1 August 2018 she said:

Significantly, the proposed amendment to allow an individual to permanently delete their record will give the community greater control over their health information.

Human Rights Commissioner, Edward Santow, tweeted on 1 August the following:

I particularly welcome the Act being amended to require a court order before releasing any My Health Record information without the individual's consent.

This will give greater certainty about how individuals' health information will be used in the My Health Record system.

It gives me peace of mind when people like Angelene Falk and Edward Santow publicly say the system will protect the privacy of Australians.

The My Health Records Amendment (Strengthening Privacy) Bill 2018 will especially benefit those in our community who are less well-off, those who frequently change their address, and those in rural and remote areas. It is the more vulnerable in our community who may find it challenging to navigate the healthcare system effectively. Making healthcare outcomes better for these people will make their lives better.

When more people are healthier and when they recover quicker from ailments, the whole community benefits. When a doctor can immediately see the clinical information of a person they are seeing for the first time, they can move more quickly and more effectively to cure their new patient. A digital record that is safe and secure is a wonderful health service. It is the natural extension of the technological advancement that we've seen revolutionise our modern world. We've seen the downside of technological advancement, certainly, and there are a lot of people out there who say technological advancement is pure evil. Well, this new application of wonderful advancements in digital and online technology will be a massive power for good in our country.

I commend to the House this bill and the amendments that provide certainty for Australians and I look forward to not opting out of this brilliant new health reform. Unlike the previous speaker, the member for Petrie, Luke Howarth, I have not had the same doctor since my birth, for obvious reasons, and I'm glad that we live in a country where people come first and where they can opt out if they want, for it is choice that makes our country the great country that it is.

Russell Broadbent (McMillan, Liberal Party) Share this | Link to this | Hansard source

I've been listening to the debate this afternoon and into this evening about the My Health Records Amendment (Strengthening Privacy) Bill 2018. To some on the other side, this has been a case of some humour where they have proffered that they can joke about this issue—and they have. Ha ha. To me, this could not be more serious. In every community that I've ever served, one of their basic priorities has been the health and wellbeing of the community—both physical and mental health. What's this bill all about? This bill, for those who are listening to this debate, is all about having a healthier and happier, therefore, Australian community that is looking after wellbeing. It absolutely has a clear intention of having a better health system.

I don't care which government is in power in this nation; they all have a responsibility for the health and wellbeing of their community. That's why any misinformation around health annoys me. Not many things annoy me, as you all know. I don't get annoyed. I don't get angry. I don't get upset. But I do get annoyed around the issue of health—and that is the important issue that we've been talking about today—being used to perhaps divide our nation and divide people's thinking on how important issues like we are discussing this evening are to the people of Australia. Why was it that somebody had the intention of drawing all the information they possibly could from all people's health records—just because they thought it was a good idea? I don't think so. I think they did this because they believe it would have a health outcome that's beneficial to the people of Australia. I think they did this because they know that, if they have the opportunity, if they have the wherewithal and if they have the facilities—that is, the mechanisms—so we can implement this, we can make a difference to the lives of thousands and thousands of people across Australia.

Why do I say that? We have not been in the casualty ward when someone comes to you as a hospital admission because the medicine that they've taken has reacted badly in their system or in relation to another medicine they've taken because the practitioner didn't know, when prescribing, the full information held by the clinician who was looking after the patient originally. There are hundreds and hundreds of hospital admissions because of legal drugs that people have taken or had prescribed to them. It came home to me only recently when a dear friend who has passed away now was given during his treatment—you are not going to believe it—a drug he was allergic to. And so, at a crucial time in the protection of his life, he just happened to get a drug that he was allergic to. We had no idea why he wasn't responding in the way that he should have been with the drugs he'd been given. Sadly this went on for too long until he was left in a position where not a lot would work. We are not blaming anybody for that. My mate was sick. It's one of those things that happen. It was reversed as quickly as possible, but it was too late, so it's personal for me when we talk about how an issue like this can directly affect a patient.

How can we reduce those hospital admissions? The only way we are going to do that is through shared information, which will come only from those like myself that are willing to share their health information. We do it as a collective. I understand that the member for Goldstein immediately raised concerns about this issue when it was announced. He said to his community and to the leadership that he'd be an opt-out and wouldn't be participating, because he felt there was a risk that people's health records 'could be hacked'—I think those were his terms. Therefore this legislation endeavours to go as far as we possibly can to protect individual health records.

If we can achieve this, we'll have fewer drug related adverse events. It's similar to what I've just been talking about. If we can have similar outcomes in prescription drug events and not cause the detriment, it's a win-win situation, but only if we have information on record that a clinical practitioner can access very quickly. Recently a friend on holiday fell ill. No-one knew what was going on. There was no reason for the illness, but it was severe, it was chronic, it was happening and there was no answer for it. The first thing you'd want to reach for is the individual records from their GP or My Health Record. If you can access that very quickly then it doesn't matter whether you are in Queensland, New South Wales, Victoria or Tasmania; you are virtually protected on the road.

I happen to be of an age where I know thousands of people—they call them grey nomads—who are on the road for more than half the year before they park their caravans and come home to Victoria, New South Wales, Queensland, Tasmania or wherever. A whole cohort of people are now moving around this nation unlike we've ever seen before, needing their health records to follow them to get treatments as they go around so that their lifestyle is not inhibited and they can keep doing what they want to, so they can go to a Brisbane hospital and My Health Record will say, 'This is what this person's been having, this is what works and this is what doesn't work.'

Another advantage is when they are on the road and get to Brisbane, they don't have to go through the whole process again of referral, blood test, examination, information to the doctor, doctor reads blood test and then represcribes, hopefully, what they were receiving before, when that information could have been derived from My Health Record. That's how I understand it anyway. You reduce duplication and churning within the health system. That has to be a benefit, because that opens up opportunities for other people to be using those benefits and using them faster, getting quicker application for the drugs that they need, the health care that they need, the doctor that they need, the hospital that they need and the care that they need.

So it's a matter of common sense that has driven this whole process. There's not just one person looking after an individual; there are a team of healthcare providers managing the overall health of an individual. I heard the member for Bennelong say, 'I'm glad I live in a country where people come first.' I'm living in a country where there could be at any given time a number of professionals looking after me or my family—perhaps one of my grandchildren—at the same time. You'd want all of them to know what's going on with the program that they are dealing with. You would want every one of them to know that it was a coordinated approach to whatever was happening with your child, your grandchild or, in some cases, your great-grandchild. Suppose you're seeing multiple healthcare providers and you're here in Canberra. I can tell you: I've been crook in Canberra. I've been so crook I ended up at a hospital. I thought I was going to die. They decided that I wasn't going to die, which I was very relieved about, and I got amazing care at that hospital. It took a long time for them to see me. I thought I'd die before they did, but I didn't die before they did. It turned out it was just one of these things that you catch here in this building or on planes. I don't know where you catch it, but it certainly can be difficult. We can all handle it, but I think we take away more than we bring in. So I would like to think that, when I walk into that hospital, they can immediately go to My Health Record and say: 'Yes, we've got you on record. We know what's happening here. This is what we need to give you. This is how you'll be attended to.' The advantages of that are ongoing, so I can see that.

The other thing is that healthcare practitioners benefit from being able to derive information, because you're going to get better treatment if they all know what's going on. If you've got professionals dealing with you and they all know what's going on, you are going to get better treatment and you're going to get it faster. There have been detractors in the move to this, but we have to understand that we've got the facility and the opportunity. That's why I'm supporting this bill, because I think there are health benefits for the Australian people.

I know that, if we were not in government today and the opposition were in government today, they would be arguing for exactly this, and we might be arguing, 'Oh, you mucked this up and you mucked that up, and the rollout of this has been a disgrace,' but we'd only be arguing for the sake of arguing. I'm putting to the House tonight that the My Health Records Amendment (Strengthening Privacy) Bill 2018 is a bill that should be supported. It shouldn't be amended. It should pass this House unanimously with the support of everybody, because it's going to be your child or grandchild that we will be dealing with one day, and this can benefit them. I think we all know that. Already six million Australians have access to My Health Record. It's not enough. It's a bit like immunisation: you need everybody in the system if you're going to get the best out of the system and the best outcome for whoever you are. A lot of people, as I said before, might not move out of their general area for most of their lives, but more and more Australians are moving. There are six million Australians already signed up for this. If we can double that, the amount of monetary savings to the outlays of local, state and federal governments, could be quite amazing. That's money we can pour back into hospitals, back into GPs—who are our front line—back into state services, such as the ambos that come and address difficult situations and triage you on the spot and back into the opportunities to have greater healthcare opportunities at a local level. So, there are only pluses, all the way through this bill. There are only benefits to this community.

So, I commend the bill to you. I hope we take this opportunity to pass it with enthusiasm and give people the freedom to opt out if that's what they want to do. I accept that. But I encourage everybody to participate in the My Health Records program, which will make a huge difference to all those people who are getting to that time when they need help. Whether you're of a very young age, whether you're in midlife or whether you're in old age, this is of benefit to you.

Bert Van Manen (Forde, Liberal Party) Share this | Link to this | Hansard source

It's a pleasure to rise in this House and speak about the My Health Records Amendment (Strengthening Privacy) Bill 2018. I think the contribution by the member for McMillan covered a lot of the really important points. We're at a time today when we as governments have to look at how we utilise technology and the capabilities of the technology that is available to us to reduce the cost and the burden of red tape on our society. And I want to put on the record that I thank those opposite for putting in place a system such as this when they were last in government and also put on the record that I have signed up and registered for My Health Record, because I believe it is not only in the best interests of my future health and the management of anything that may arise as I get older, sadly, but, equally, of benefit to the Australian people.

I want to touch on an experience that I had on a recent visit to Taiwan early in July. We met with the deputy minister for health, and we discussed at length their electronic health system. It is a system that has a card with your photo on it and a smart chip. When you go into your local doctor, into the hospital or into a pharmacy, you swipe that card and it gives the medical practitioner, the pharmacy or the hospital access to your health record. But it provides access to your full medical health record. The benefit is that, whether it's the GP or the pharmacy or the hospital, they can see instantaneously what your health record has been and also, importantly, as the member for McMillan touched on his contribution, the drugs you're presently taking, the drugs you may have tried to take in the past but had a reaction to and the drugs they may be thinking of prescribing that may create an adverse interaction with the drugs that you're already taking.

I think this is where the My Health Record system has the potential to go. But the value of the potential in this system is the number of Australian people who take part in it. It's pleasing to see that some six million Australians have a My Health Record. Importantly, as I touched on earlier, the system has been operating without issue since 2012.

Any system of this nature will always be looked to be refined and improved upon. That is the nature of a new system such as this. But the importance of this system to me is the fact that it creates the capacity for the transfer and the accessibility of information. All of us in this place regularly speak about the importance of the information age and the ability to access and use information and data to make better decisions. I think that is the core strength and the core importance of the My Health Record. It gives our medical professionals, whether they be our local GP, whether they be the specialist, whether they be a hospital or whether they be a pharmacist—and I would suggest many of us in this place have more than one medical professional that we interact with over the course of a period of time—the ability to see at a glance your medical history so that they can make the best decisions on your health or a diagnosis of a health condition and so that they can give you the best advice possible for you to take action in regard to your health.

We have been talking in this place over the last few days about our aged-care system. One aspect of our aged-care system that is becoming increasingly difficult to manage is dementia. A system like My Health Record can provide enormous benefit to our senior Australians who are suffering from dementia in that they can rest safe in the knowledge that the medical practitioners who are providing them advice and treatment and looking after them have full access to and a full understanding of their medical situation. I think that is incredibly important.

I understand that, as with any new system such as this, some people have concerns about privacy. I had no such concerns, because I believed that the system was well set up from the outset. But it's always worthwhile to take the opportunity to improve systems such as this, which have an enormous amount of private data and information, to ensure that the privacy settings and the security that attaches to that are at the best level they can be so that the Australian people can be confident that access to their private medical information is limited to those who they give permission to. That is the core importance of this bill for me—that we strengthen the privacy protections to ensure that Australian people are confident that the My Health Record system is going to protect their privacy and their confidential medical records from access by those who are not permitted to access those records, or for nefarious purposes. The Australian people should feel confident that the system that has been put in place—and I'm sure it has support across both sides of this parliament—has the security measures and privacy protections in place that allow individual Australians to provide their medical practitioners with the access necessary to ensure they get the medical treatment they deserve.

If I look at the medical interactions I've had over the past few years, it would have been worthwhile for my medical practitioners in a number of fields to have access to necessary medical information without sending referrals, letters and paperwork. All of those sorts of things would be done in a streamlined, efficient system. I think the member for McMillan outlined it very, very well in his contribution. If we improve the efficiency and the transmission of information, and the ability for our medical practitioners to access that information on an appropriate basis, one of the things we do is immensely increase the efficiency of our medical system. Increasing the efficiency of our medical system is extraordinarily important, and is one of the reasons I supported My Health Record from its inception and support this bill.

The cost savings generated can be reallocated to providing additional services and funding for our hospitals, our medical practitioners and our Pharmaceutical Benefit Scheme. There are a whole range of opportunities created by improving the efficiency and efficacy of our medical records system and the access to that medical records system by our medical practitioners. There are also enormous cost savings in reducing incorrect diagnoses or prescriptions of medicines that may create unwanted interactions with other medicines that people are already taking. There is plenty of evidence of people being admitted to hospital as a result of medicines being prescribed in a situation where the prescriber, the pharmacy, has done nothing wrong but wasn't fully aware of the other medicines the person was taking, and it's created an interaction that has created a health issue for that particular patient. All of those things cost time, money and angst for families across our country.

The value of My Health Record and this bill in terms of improving privacy and security is in ensuring, as much as practicable, that we reduce the possibility of those events occurring. The value of reducing those events occurring is that the Australian people can trust that our medical profession is fully appraised of their personal medical situations. The greatest benefit is that it allows Australians who have serious medical conditions, and the rest of us, to be confident that the medical treatment that we are getting is the best in the world. I think our system actually is already one of the best in the world, but we can always improve it. I think the full use of My Health Record and creating confidence in the Australian people—as I said previously, we already have six million on My Health Record, but it would be great to see it at 10 million, 12 million or more—will ensure that the detail that we have in our system and the information we have in our system of people's personal situations ensures the delivery of the best health outcomes we can for the Australian people on an everyday basis. If the result of that is that we generate savings, then the best part of that is that we have the ability to reinvest those savings in our health network to make it even better for the Australian population on a day-to-day basis. And on that basis, I fully support this bill.