Thursday, 12 May 2022

Health Legislation Amendment (Information Sharing) Bill 2021

Second reading

Debate resumed on motion of Mr LEANE:

That the bill be now read a second time.

Ms CROZIER (Southern Metropolitan) (15:51): I rise to speak this afternoon to the Health Legislation Amendment (Information Sharing) Bill 2021, which we are finally debating today. This bill was brought into the Parliament last year—very quickly, I might add. It was introduced into the Parliament and it was debated a week later, and that again demonstrates the chaos of the government when bringing together a government program. I have real concerns about the way the government has undertaken putting this particular piece of legislation together because of the number of stakeholders that have since spoken to me saying that they were also concerned about those time frames.

Before I do speak about the concerns of the stakeholders, can I just outline the purpose and what the bill intends to do. I think the intention of the bill is actually very sound. I understand why the government is trying to bring this legislation into the Parliament. They want to be able to better communicate with health professionals within health services—as they specify; these are specified health services—and they want to get that information so that there are more efficient processes when a patient is admitted to hospital or comes into contact with Victoria’s health system.

Whilst I am mentioning Victoria’s health system, I cannot go without saying that I am extremely concerned about the state of our health system in Victoria at present. After two years of COVID, after six lockdowns where the government kept telling Victorians that we needed to go into lockdown to prepare our health system, our health system is not any better for that. It is worse, and tragically too many Victorians’ health conditions are deteriorating. They are getting sicker and, tragically and sadly, they are dying. They are dying before they get an ambulance, before they get through to 000 and in the back of ambulances. They are dying because their elective surgery has been delayed and postponed and they have not got the care that they have needed and deserved.

Two nights ago Ambulance Victoria went into another code orange. That is a very serious situation. It is just prior to a code red, meaning there is just no capacity within the system for Ambulance Victoria to respond to code 1 emergencies—or any response. That again demonstrates the state. We have had a number of code reds and we have had a number of code oranges over the past few months, indicating just the pressures on the system. I was listening to question time with the Minister for Health, and the Premier was in there interjecting at every occasion, which I think was quite disgraceful, because we were asking questions about very serious issues around the 000 crisis, around the terrible situations of Victorians who have died and around their family members and their loved ones actually wanting to understand the reasons for the delays and how we can improve the system. They want to have greater transparency so that we can improve the system and so that what they have experienced will not happen to another Victorian.

So that is the state of our health system in Victoria. It is verging on Third World at times. I am a former nurse—a former midwife—having worked in the public system for 16 years. It was a great privilege to look after so many Victorians at their most vulnerable, and we were always very proud of Victoria’s health system. It had its challenges, there was no question, but the state of our system today is so dire. When you have got senior physicians and clinicians walking away because they have lost confidence in the system, it just demonstrates how dire the situation is.

So with that being said, yes, the government is looking to improve our health system, and one of their measures is to introduce this piece of legislation. What the legislation will do is permit the Secretary of the Department of Health and their delegates to create and maintain an electronic health information sharing platform. It will enable specified health services to access information about patients and their previous treatments, medications, allergies, alerts, admissions, discharge summaries, outpatient consultations, laboratory and image results and any other information that is determined by the Secretary of the Department of Health at that health service and other specified health services. It will require specified health services to provide information to the secretary or their delegates in order to establish the health information sharing platform and ensure clinicians at specified health services have access to complete and accurate health information about a patient so that the best care and treatment can be provided. That is the intent of this bill.

As I have just said in my preamble, our health system in this state is far from providing the best care and treatment, which I think is reflective not of the clinicians—far from it—but of the failure of the Andrews Labor government to get policy settings right, to have the proper investment and to have the proper management to be able to oversee very significant services such as our healthcare system provides. The government will use COVID as the excuse and as the cover for all of their failures. Well, they cannot, because the Productivity Commission prior to COVID actually highlighted the shortage of beds, the extension in wait times here and the fewer staff per capita. They were the official figures prior to COVID.

And of course, as many have heard me say, the record numbers on the elective surgery waitlist were there prior to COVID. We have got nearly 90 000 Victorians waiting on that elective surgery waitlist, and their health is deteriorating. Today’s report in one of Melbourne’s papers talks about the shortage of contrast dyes in very important procedures such as CT scanning, X-rays and other vital diagnostic tools for very significant health issues. There are shortages there—yes, there is a global shortage worldwide for these mediums—but with better planning and better preparation by the department and the government we would not be in this situation where there is such a dire shortage. There will be more Victorians who will suffer as a result of this lack of planning and this mismanagement—and quite frankly the incompetence—that have been overlooked in the last few years.

That last point about the best care and treatment, which is not happening, comes out when the government says that was as a result of Targeting Zero: Supporting the Victorian Hospital System to Eliminate Avoidable Harm and Strengthen Quality of Care. I really do think that that report should be repeated because of the number of Victorians who are dying within the system and who are not getting the care that they need, as I have previously said. There are so many examples. I do not have enough time to talk about those, but the misdiagnoses, the lack of attention that has been given and the sentinel events are there for everyone to see, and sadly those numbers are stacking up in the coroner’s office.

This possibly is a little bit out of date, this Targeting Zero. There is a summary of recommendations in it, and some of those recommendations relate to how this legislation has been drafted. It talks about how:

The flow of information in the health system ensures deficiencies in care are identified and focuses attention on opportunities for improvement.

It talks about establishing:

… modern data management systems by expediting the development of a statewide patient identifier and the transition to electronic patient record systems in hospitals …

and a number of other recommendations. That intent I think is very understandable; I understand that. I actually do not mind if my information is shared across health services in the interests of efficiency and to assist those clinicians that would be caring for me should the need arise. But there are many people in the state that do not share that view, and they have a right to have that view. There are many advocates and stakeholders who also do not share that view, and I want to go back to where I started about the chaotic process that the government has undertaken to introduce this bill, whereby it was rushed—

Sitting suspended 4.02 pm until 4.21 pm.

Ms CROZIER: As I was speaking just prior to the break, I was talking about the chaotic introduction of this bill and the number of issues that stakeholders have had with the bill, and I want to go through those in a moment.

At the bill briefing there were a number of concerns that I raised in terms of why the government was bringing in this bill. There was a limited time for stakeholders to provide any feedback. There was no indication of any budget allocation in this financial year. This is a very large undertaking. Putting a system like this in place will cost billions of dollars, and it has to be right. We know the government’s history on this. We had HealthSMART back when Daniel Andrews was the health minister. That was an absolute dog’s breakfast. It really demonstrated just how poorly the system was thought through. The cost blowouts on that were just exorbitant. We are used to that with Labor governments, but at that point in time they were very, very large—not as large as the cost blowouts in projects that are occurring right across the state at the moment, but the Victorian Ombudsman in 2011 reported that the project was going to cost another $243 million to complete. That was an absolute dog’s breakfast, that project. We need to understand, if the government is going to do these projects, where the budget is and how they are going to do it.

There have been issues around cybersecurity. I was assured by the government that that would be addressed, but we know that in 2019 there were really significant cyber attacks across our health system, particularly in the south-west of Victoria and also in parts of Gippsland, that really brought the whole system to a standstill. Actually in some metropolitan hospitals too there were problems with their IT systems. At Eastern Health, I think I recall, there were significant issues too, but the cyber attack in south-west Victoria was very significant and really caused a huge amount of problems for many months.

So there is cybersecurity, the lack of budget and the issue around compatibility with systems. I was up at Albury Wodonga Health with the Leader of the Opposition a few weeks ago. We were having a health forum and hearing of the very devastating circumstances of that health service from clinicians and community members. The Wodonga Hospital cannot even speak with the Albury Base Hospital. Those systems are not even in place. This is what this system will be designed to do, but they have not even got that right at this point in time, let alone rolling out a big system across the state. There is no business case. There are many issues with this.

I want to move on to the issues that stakeholders have come back to me on. They also have raised significant concerns about the feedback; they feel that there was not enough consultation. I will speak about a number of those who have given me some information. Liberty Victoria, for instance, is very concerned about the privacy implications of the legislation. They explained that the Australian government’s health records scheme had extensive consultation that took place with civil society groups over a number of years. This is not what has happened with the Andrews government’s legislation that we are debating this afternoon. They said in the letter:

The speed with which this Bill is being ushered through Parliament is of grave concern. Such fundamental long-term policy must be thoroughly vetted by concerned parties and by the Parliament.

They go on to say that those privacy concerns which they have got concerns with—and they have had discussions with many groups—have also been highlighted by others. The issues, as I said, with the federal government scheme took four years and lots of consultation, and they were looking at various groups to look at those high-risk groups that might be impacted by the federal legislation. They also asked: where has the call been to public interest groups from the government to have a look at this to make sure that those at-risk groups are identified so that all of these flaws can be ironed out before the legislation goes through the Parliament?

The Australian Privacy Foundation also has very serious concerns about the legislation. They question the proportionate functionality and security of the proposed electronic patient health information sharing system described in the bill. They also go on to say—and they are referring obviously to what I just referred to with HealthSMART, which was also highlighted by my colleague Emma Kealy in the other place—that any government and any department ICT programs are always fraught and always have high risks, and therefore they must be thought through properly. They said:

We ask you to pause the Bill’s passage and send it back to the lower house for amendment, requesting a more thorough community consult than has occurred.

This is fairly significant when you have got so much concern from these groups about the speed with which it has been passed through the Parliament and them asking for more consultation.

The Health Issues Centre is very concerned about the absence of an opt-out option, and I want to talk to that because I will be moving an amendment about an opt-out option. They do not believe that there is a proper process for consumers to redact sensitive information. They particularly raise concerns around mental health diagnoses or conditions that have stigma attached to them, such as if a patient is HIV-positive. Those are sensitive issues, and that has been raised with me by many, many people. I do not want my health records to be able to be accessed and to be seen by people that might have an interest in understanding what I have had done. Particularly for women, if they have had a termination, mental health issues or, as I have said, domestic violence issues and all of those issues, they are very sensitive issues and they do not want that information to be able to be accessed easily.

In this letter in which they have provided some background to me they actually give a summary of the consumer groups that they spoke with. They say that they had a constrained time frame to undertake this consultation with participants and to have a look at the legislation, and they were concerned about that. Their participants included consumer representatives, consumers representing conditions, specific community groups and consumers experiencing special circumstances that increase the complexity of data sharing, and there were a whole range of other issues that they highlighted. They had 150 consumers that registered to have a look at this, I might say. They really thought that the consumers understood, as I understand, the intent of this legislation, but those concerns, they felt, were too risky to proceed with as the government is currently pushing it through the Parliament. They wanted to understand the non-contextual disclosure of sensitive information that could lead to overtly discriminatory practices or at least unconscious bias in treatment decisions, thereby negating any potential benefits of information sharing. There were other concerns that they raised, such as what I have just described, that really gave a thorough insight into the concerns of these particular consumer groups. That came from the Health Issues Centre.

There were other groups that also put their concerns to me. The Australian Doctors Federation had a lot of questions, and I will go through those during the committee stage, but they also noted that:

… governments have a very poor track record at implementing trustworthy systems, which provide quality health information whilst maintaining the confidence of doctors and patients.

The Law Institute of Victoria also had real concerns, and I want to thank them for their input that they provided to me in terms of their concerns. Again, it is very much around what I have described about an inability for a patient to have any say about this sensitive information. Where is the provision for an opt-out system? How can patients really be thoroughly confident that their information will not be abused in some way? I think they had some excellent points that they raised with me around their concerns. I want to come back to that a bit later on in the committee stage, when I want to move my house amendments on the opt-out. Basically, again, it is an understanding of the situation, but it does not go far enough in terms of providing the protections for people to be able to have their say.

There are other concerns I have. I actually wrote to OVIC about this and wanted to get their take on it—the Office of the Victorian Information Commissioner—and they asked me to write to the health complaints commissioner to get the concerns that might have gone to the health complaints commissioner, because obviously when information and situations like this occur, then the health complaints commissioner will be subjected to a lot of those complaints. Unfortunately I have not had a response from the health complaints commissioner, which I find quite concerning. This is a serious piece of legislation. I know they are busy, but I would have expected to have some response from them about their feedback on this legislation, given that it is going to affect them if this legislation is passed in its current form, where people have no ability to control their own private information.

This is, I think, a huge concern for many, many Victorians, and I say that because over the last two years we have been micromanaged by government. We have been living through COVID, and what we have had to go through in Victoria compared to some other states and territories in Australia certainly and other places around the world has been much more subject to government control than anywhere else. I think in the context of where we are today people do want to have control. They want to take back control of their information and be able to have some control of very sensitive information, such as patient information, as we are discussing, in a platform with this information-sharing that is being proposed by the government.

I just think that it is a fair and reasonable proposition for people to want to have an ability to say, ‘Look, I don’t want my information shared’, especially if you have come out of a situation where there is domestic violence and there is somebody working on a ward or in a hospital that knows the perpetrator. You just do not know what information is going to be accessed and how it may be used. Yes, there are penalties in here; there are jail terms and there are financial implications. But this is really serious—how that information could be accessed and by whom and how it is controlled. So I do have really huge concerns around the government’s inability or not wanting to allow people to have that opt-out. I think this is incredibly important. And for the government to just bring this in so quickly without having thought it through or not even mirroring what is happening at a national level is concerning.

It took, as I said, four years for them to get it right. This legislation is going to start to be in operation next year, or the process will start. So it is happening far too quickly without proper analysis and depth of looking at all the scenarios and without having really critical feedback from stakeholders. I have listed some of them, but there are many, many more out there. When I spoke to the law institute, I did ask them when they last spoke to the government. They said it was in December. I do not think that is good enough. When you are dealing with significant legislation such as this, these bodies should have far more consultation. It just demonstrates how this government operates. It is, ‘My way or the highway. We’re pushing through and we don’t care’.

The AMA largely support this reform, as they have indicated, but they say that the model is flawed because it does not incorporate general practice. They talk about how for optimal care GPs need to be informed and be able to view that health information as well. So it makes no sense, if you are having various health services in this system, why you would not have others in primary health care able to access that health information as well.

I have a reasoned amendment that I want to speak to in the last few moments that I have. I move:

That all the words after ‘That’ be omitted and replaced with the words ‘this bill be referred to the Legal and Social Issues Committee for inquiry, consideration and report by 15 September 2022.’.

The reason I wanted to move this amendment is largely based on what I have just said. It is the lack of stakeholder consultation. Very important stakeholders, advocacy groups, have real concerns about the model the government is proposing, and they feel that it is very important, as do I, that this legislation be referred off to a committee so that it can be looked at in more detail and that that proper consultation that has not taken place by the government can be done. Going to a committee such as the Legal and Social Issues Committee, Acting President Patten, of which you and I are members, for it to consider, inquire and report by 15 September this year would give those groups time to put their concerns to a committee so that the Parliament does its job where the government has failed, and that is to look at options there to enable the best model and the best outcome for the people of Victoria.

That is why I have moved this reasoned amendment. I think it is an important amendment, and I would hope that the Parliament would see fit to support it on the basis of what I have said: lack of stakeholder consultation on such an important issue as patient information. It is your information. It is not government information; it is yours. You have a right to understand and control it. For the government to say, ‘No, we’re going to look at it and we’re going to have the secretary of the department hold it. Various delegates and health services will be included but some won’t be’ is not a proper process or model that could be used in a health system that is on its knees. It is coming out of COVID, and we have got so many issues. The government is trying to bring patients from the public system into the private system; those systems are not going to be compatible. There are so many issues around the sharing of information, and I do not believe that this legislation goes towards that aim. It is not fair and reasonable for the government to say to Victorian citizens, ‘We are going to control your patient information, and you don’t have any say over it’. That is wrong, especially as Victorians have experienced so much control by this government in the last two years.

I think every Victorian, if they knew the extent of what was going to happen with the passage of this legislation, would be very concerned that the government is doing this but more concerned that the government has failed to consult properly with the Victorian community and with a raft of very significant stakeholders. I see that I am out of time, but I am happy to move my amendment. And I do urge all to support that amendment to ensure that we get the right outcomes.

Ms WATT (Northern Metropolitan) (16:41): I rise to speak on this bill. I would like to note that the Health Legislation Amendment (Information Sharing) Bill 2021 reinforces the Andrews government’s steadfast commitment to improving the quality and safety of Victoria’s health system. We proved this in the recent state budget, where we put both patients and the health system first. Our pandemic repair plan will mean more staff, better hospitals and first-class care for patients. It means training thousands of nurses to give Victorians the care they deserve, and I will just take a moment to acknowledge International Nurses—are just the very best—Day. I am not sure that that is the title, but it possibly should be. It means upgrading every existing hospital emergency department across our state, and it means building some new ones too. Unlike those opposite, who cut funding when they were in government, those on my side of the house are getting on with properly funding our system, making investments akin to the $12 billion of funding in the state budget to ensure our healthcare system is there for everyone when they need it most.

Having led clinical governance efforts in hospital and health settings, this is a really good bill for me to speak on; it gives me great perspective on safety and quality in our state. This bill addresses a number of recommendations in Targeting Zero, a report that I am well familiar with, which was a review of hospital safety and quality assurance in Victoria. The Targeting Zero report was commissioned by the then Minister for Health following the discovery of a cluster of tragically avoidable perinatal deaths at Djerriwarrh Health Services. The review is a detailed and extensive analysis of how the department oversees and supports the quality and safety of care across the Victorian health system. The Department of Health and Human Services consulted widely, seeking the views and experiences of patients, clinicians, hospital managers and boards about how to make Victoria’s healthcare system safer, and I recall those conversations in the boardroom. The review highlights several cases as missed opportunities where practice excellence was not shared across the health system. The department accepted in principle all of the recommendations, and work is underway to implement them.

As part of this response new organisations were established to simplify the current system and better respond to the needs of patients and healthcare workers. Safer Care Victoria was established and will work with health services to monitor and improve the quality and safety of care delivered across our state system, with the goal of achieving zero avoidable patient harm. A new health information system will analyse and share information across our system to ensure that everyone has an accurate picture of where the concerns are and where we are getting it right. The Victorian Clinical Council will provide clinical expertise to the government, the department and health services on how to make the system safer and provide better care for all Victorians, and I thank the members of that council for the impressive and quite substantial work that they do. The Boards Ministerial Advisory Committee will ensure our hospitals and health service boards have the right mix of knowledge, skills and experience to strengthen local governance and decision-making.

It is five years on from the Targeting Zero report, and the Victorian health system has improved on quality and safety monitoring, clinical governance and reporting. Of the 179 recommendations in that report, significant progress has been made on almost every recommendation, and well over 70 per cent of these have been 100 per cent completed. For example, Safer Care Victoria has made great progress with information sharing about system trends and risks, establishing information-sharing arrangements and agreements with many organisations for the very first time. This includes working with organisations such as the Consultative Council on Obstetric and Paediatric Mortality and Morbidity. Safer Care Victoria is also working to supplement the annual Victorian Audit of Surgical Mortality with monthly progress reports that contain de-identified information on surgical mortality.

Our hardworking nurses, doctors, paramedics and other healthcare workers provide all Victorians with high-quality care, but we know that there is always more work to be done. Leading surgeon Professor David Watters OBE said in response to the Targeting Zero report:

Victorians should have confidence in the fact that they have access to one of the best and safest health systems in the world.

Implementing the recommendations of the Duckett report across the state will reduce adverse events and avoidable harm …

The bill will support the Targeting Zero:Supporting the Victorian Hospital System to Eliminate Avoidable Harm and Strengthen Quality of Care report led by Professor Stephen Duckett in 2016 and commissioned by the former Minister for Health.

Furthermore, the bill also supports the findings in the final report of the Royal Commission into Victoria’s Mental Health System, which notes a lack of information sharing culture. Recommendation 62.1.c says that the Victorian government should develop, fund and implement a mental health information and data exchange. The royal commission’s final report included 65 recommendations in addition to the nine interim report recommendations. The recommendations set out a 10-year vision for a future mental health system in our state where people can access treatment close to their homes and in their communities. The Victorian government has committed to implementing all recommendations of that royal commission, including recommendation 62.1.c, which is, again, that the Victorian government develop, fund and implement a mental health information and data exchange.

Furthermore, information use and sharing was featured as a priority capability for a future mental health system. The royal commission’s final report notes:

Information use and sharing: understanding of and practice alignment with new expectations in information collection, use and sharing and practice, including approaches to support and respond to consumer consent to share information with other service providers, families, carers and supporters. In addition, competency in using the new Mental Health Record and Mental Health Information and Data Exchange.

Throughout the final report there are, sadly—and we have heard about this all too many times in this chamber—too many real-life examples from individuals who are trying to navigate a really complex mental health system, revealing the significant benefits of a health information sharing system. There is a de-identified quote in the final report that I just want to share with you now. It is pretty significant.

My private doctor doesn’t have a fax. They wouldn’t take an email, they wouldn’t take a phone call. And so I ended up getting my parents to print a copy so that I could physically hand it to the treating team so that they would have the relevant information. However, what happened in that exchange was that my parents, particularly my mother read it, which is a huge violation of privacy, but also there’s a history of family violence there. And so it really wasn’t an appropriate mechanism at all for that information sharing to occur between my private doctor and the public hospital treating team. And it was incredibly disempowering that there was no efficient, streamlined way for that information sharing to occur, it was detrimental to my treatment, it was detrimental for them not to have that contextual information.

The commission recommended as part of three new ICT components that the new mental health information and data exchange would allow for the sharing of information outside of public mental health and wellbeing services, such as GPs and community mental health and wellbeing services, where appropriate. This could happen for one of two purposes: to facilitate service delivery or to enable access to de-identified data for research and administrative purposes. The mental health information and data exchange should allow interoperability between the recommended electronic mental health and wellbeing record and other major systems, such as the hospital electronic medical records or GP practice management systems or specialist psychiatric and psychologist systems and My Health Record.

There is so much more to this bill that I could speak to, but throughout this bill what is really clear is that the Victorian government continues to put the health, privacy and security of Victorians first. I commend this bill.

Mr HAYES (Southern Metropolitan) (16:49): We are all for efficiency, and we are all for better patient care. However, we are also concerned about privacy and the rights of the individual to have complete ownership of their personal health information. It is difficult to think of many more sensitive subjects for a person than this, and in a time of increased assaults on privacy I do feel that the lack of an opt-out clause in this bill is a bridge too far. After all, we saw with the federal government—themselves no defenders of privacy—the provision of an opt-out clause for health information in their My Health Record system. This opt-out was selected by millions of Australians, because with the increasing creep of governments and, let us not forget, big corporations into our personal lives, privacy is an important issue for many Australians.

We are all aware of data breaches with these types of systems, and a significant number of people do not trust it not to happen in their case. Generally speaking, a healthy distrust of excessive government power is a tradition of this country and the parliamentary system as it has evolved with common law, a system which we are part of. Let me be perfectly clear: privacy is an assumed right; it should not be a privilege granted at the behest of governments. I have expressed my concern about that in the previous debate about the Road Safety Legislation Amendment Bill 2022 and the use of camera surveillance and facial recognition.

I feel that privacy is something that is under great attack these days not only from governments, as I said, but from large corporations and databanks in general. But as far back as 1969, Professor Zelman Cowen, later a distinguished Governor-General, gave a Boyer lecture entitled ‘The Private Man’, and I quote from it:

A man without privacy is a man without dignity; the fear that Big Brother is watching and listening threatens the freedom of the individual no less than the prison bars.

These words are as true today as they were back then, so I question why this bill does not simply provide an opt-out clause for Victorians while a similar federal system does.

If people do not trust this database to protect their privacy, they should be given the chance to opt out of the system. The My Health Record system provides an ability to control access to the documents that are held on that system; however, none of those features are part of this legislation we are debating here today. I agree with Ms Crozier that this has been once again, like the road safety legislation and the use of cameras, just dumped on us without proper discussion and consultation. Why the rush, and why no consultation?

Another issue with this bill beyond that of privacy and consent is cost. Cost blowouts are a concern with these massive IT projects. The HealthSMART system, which was announced here in Victoria in 2003, is a great example of an attempt at improving health record information which ended in tears. According to the tech website IEEE Spectrum the original budget was $323 million, with a completion date of 2007; by the time the project was abandoned the cost had blown out to $566 million, and that was in the year 2012. So it ended up not being so smart—and hopefully never so smart again.

So while I welcome the intention to improve patient care, and that is something that I would really like to see—the situation is absolutely dire—I would like to see an opt-out clause provided and a full accounting of who will have legitimate access to this information, complete with safeguards as to who gets access. As well, the project needs a full and regular accounting of how the system is protecting people’s privacy and dignity while delivering better health outcomes for all Victorians. I will leave it there.

Ms BURNETT-WAKE (Eastern Victoria) (16:54): I rise to speak on the Health Legislation Amendment (Information Sharing) Bill 2021. Under this bill as it stands a new system will be created allowing a person’s private medical information to be shared between hospitals and health services without their consent. That is key here, and I will be talking about that quite a bit through my contribution. This bill amends the Health Services Act 1988 to create and maintain an electronic health information sharing platform to share information between hospitals and health services. It intends to address challenges associated with accessing patient health information. We have been told information is currently spread across different health services in different databases and in paper records. This statewide collation of patient health information intends to create a more efficient, safer and more secure method of sharing health information between services. However, there is a flip side to that. There are genuine concerns that exist in the community around privacy and the inability of patients to opt out of this system which are worthy of discussion today. Firstly, there is no list in the legislation of exactly what information will be included in this new database. It is assumed it will include all information about patients and their previous treatments, medications, allergies, discharge summaries, outpatient consultations, lab and image results and other information deemed suitable by the Department of Health.

The bill makes it mandatory for health services to adopt the new system, including but not limited to ambulance services, hospitals, public health services, community health services, the Victorian Institute of Forensic Mental Health and aged care facilities. It is the Secretary of the Department of Health that is responsible for establishing and maintaining the new information sharing system. The secretary is empowered to specify the health information required to be contained in the system, direct health services to provide prescribed information to the secretary and disclose specified health information for the purposes of the new system, without requiring consent—again, those words, ‘without requiring consent’—of patients to whom the information relates. If passed as is, patients would have no ability to opt out of the new database before it is proposed to be launched in February 2023. Victorians would lose control over access to their sensitive information and would have no control over what parties and agencies are accessing that information. It essentially gives health professionals complete authority over our medical information. There is nothing in the bill that prevents health information that is not relevant or appropriate from being seen by treating doctors. It allows specified persons to access the database. To put it simply, it allows agents of the Victorian government to view a complete record of every Victorian’s most sensitive and private information.

We saw something similar when My Health Record was introduced at a federal level. That is the national health record system that has been around for some years now. The difference with My Health Record was that there was a period of time during which people could opt out. Everyone would have a My Health Record unless they opted out, which allowed people to have control over where their information is stored and who can access it. More than 2.5 million people withdrew from My Health Record when it moved to an opt-out system, because not everyone wants their health information being shared around. A further 300 000 people cancelled their records. Under this system there is no opportunity to opt out. We know this is the government of mandates, and this is yet another mandate scenario as far as I can see. Hospitals and health services have no choice but to opt in, and everyday Victorians have no choice but for their private health information to be available in this database. This includes current and historical mental health information, and people will not be afforded the benefit of a list that shows exactly who can access this information. It does not appear like there are many limits or regulations on who can access it. One section of this bill states that:

A person employed or engaged by a … health service and who is authorised … may access the … System and use and disclose … patient … information for the purpose of providing medical treatment to a person.

There is a long list—not in this bill, but hypothetically—of health practitioners and those outside the health system that could end up with access to this information. With My Health Record, people are able to control access to documents by restricting access to certain documents by putting in place access codes. People can also remove documents completely and request their entire record be deleted. None of these options that give Victorians the right to control and consent to their information being shared are incorporated into this bill or this new system. What happens to people who want to keep their health information private? There are people who are concerned that information may be available to their workplace or others and may become a reason for discrimination. This bill imposes fines for unauthorised access to the system, but is that really enough to stop the urge for some people to look up files that they should not?

The Royal Commission into Victoria’s Mental Health System recommended we adopt a system that allows for mental health information to be shared. There are obvious benefits in health practitioners having access to a complete health record in times of patient crisis. It becomes much easier to support and treat someone when they have an understanding of their background and their triggers. However, the flip side to that argument is of course the people who do not go around openly disclosing their mental health struggles. There should not be shame in addressing and overcoming mental health struggles, but for many there is. Where that information becomes accessible to everyone in the health sphere, it opens the door for discrimination. While I can see the obvious ease in having a central system, there are some people who prefer to keep their health information private, especially mental health information. If people become worried that their mental health information will be accessible by a range of people, they are less likely to be forthcoming in seeking help. That is the last thing we need right now. We are currently living in a shadow pandemic where the mental health of Victorians has been severely impacted by lockdowns and the associated impacts. We need people to be confident to come forward and seek help. They should have the right to decide if they want their information shared.

Another concern I wish to touch on is data protection and security. There have been numerous cases of security breaches in recent years. There was the time that 30 000 Victorian public servants had their personal details downloaded by an unknown party when the system was hacked, and in 2016 it came out that the Department of Health and Human Services had been breaching the privacy and safety of children in foster care by giving access to dangerous parents. The potential for mishaps with data is huge, and they have extraordinary consequences for victims of these data breaches. While the bill imposes fines for unauthorised access, a fine is not a strong deterrent. Fines are a reactive penalty in the sense that they are issued after the harm is done and after the breach comes to light. These are not protections from unauthorised use, and that is a serious concern. For victims of family violence in particular there need to be proper safeguards in place, and at this stage we just do not have the information on how the system will work.

Implementing this database will require both money and planning, yet the Victorian state budget that was handed down on 3 May had no provision. No provision seems to have been made for this project, so I am not sure where the money is coming from; it has not been outlined yet. We have not received any information about when the project will be complete or whether it will be compatible with the systems used in other states and territories. If we are going to the effort of creating a new database, it would make sense to make it compatible with other systems for Victorians who move interstate to reduce any issues in tracking down records.

Overall there are many unanswered questions. How will we manage access to information other than by saying there are penalties for wrongful access? How will we monitor how and when people are accessing the data and for what purposes? How will we protect the system from cybersecurity attacks, which seem to be happening more frequently and particularly to government departments? There are endless questions that we do not have answers for at this point in time, and that is why I am supporting the recommendation that this be referred to the Legal and Social Issues Committee, of which I am a member, for further analysis, which is definitely needed. There is no harm in an additional level of scrutiny and consideration. Given that there are so many questions that remain unanswered and given the implications of this bill if passed as is and the privacy issues for Victorians, it really needs to be referred to the Legal and Social Issues Committee. I will leave my contribution there.

Mr QUILTY (Northern Victoria) (17:04): This bill represents yet another example of this government taking a good idea and ruining it. This is yet another example of this government leaning into their authoritarian and patronising tendencies. There seem to be very few limits to how far they are willing to go in intruding into your lives if it is for your own good—your own good as they see it—or, worse, if they think it is for the greater good, a terrifying principle that can be and has been used to justify just about anything. Consent is always required, or else it is tyranny.

The good idea in this bill is that information should be available in a secure digital database that can be shared across the health network to improve patient care. Of course this should be done rather than the information existing on dusty bits of paper in manila folders in various offices of GPs and clinicians around the state. It is an important update to our healthcare network in Victoria. It does not take much imagination to see how it could be beneficial for a paramedic or emergency department to have better information about patients. I do not dispute that this offers an opportunity to save lives and improve patient outcomes as well as efficiency in health care.

I have serious doubts about this government’s ability to manage another significant IT project, and I do not trust this government or indeed any government to properly manage data security. I also do not trust this government not to misuse the medical information that it will collect on the people of Victoria against those people if it suits its policy agenda. We only have to look at the outrageous vaccine passport mandates still in place to realise the potential for abuse of this information. If this government had had these records, they would not have needed the federal government to collaborate with them on mandates; they could and would have done it alone.

However, I do not oppose the creation of a database in principle. The benefits are obvious. What I do have a concern about is proposed new clause 134ZL, ‘No consent required’. The title of the clause all by itself is probably enough to let you know that the Liberal Democrats have a problem with it. What this clause outlines is that the state, not you, owns your medical records. You will participate in this data-sharing scheme whether you want to or not—no choice, no involvement, no options and no privacy. If you go to the government’s Better Health Channel website, there is a section there on patient-centred care. The principle of involving consumers of health services in the process so that they are encouraged to ask questions, have their views respected and participate in decision-making is one that has been increasingly adopted in health care around the world. It is worth touching on a few of the principles and how they might apply to the legislation before us today:

Patient-centred care is about treating a person receiving healthcare with dignity and respect and involving them in all decisions about their health. This type of care is also called ‘person-centred care’. It is an approach that is linked to a person’s healthcare rights.

Among the dot points on that page it also states:

Patient-centred care actively gives you and your family a say in the decision-making process when planning care and treatment.

It states that it is about:

… respecting your individual preferences and diversity—

and that it—

… involves recognising your needs and respects your right to make health decisions and choices.

Apparently none of that matters when it comes to involving people in choices about their health records. I do not think there is any conspiracy, just an outdated link, but it is a bit amusing that when you click on the hyperlink to ‘a person’s healthcare rights’ it comes up with a 404 error, ‘Page not found’. Perhaps that is a metaphor for Victoria.

It is possible to find the Australian Charter of Healthcare Rights, which was launched in 2019, and it is worth noting the key elements. The charter covers seven key areas, and I think four of them are relevant to this debate. Respect: people have a right to be treated as an individual, with dignity and respect, and have their beliefs and choices recognised and respected—unless, of course, it relates to their health records. Partnership: people have a right to ask questions and be involved in open and honest communication to make decisions with their healthcare provider—except, of course, around their health records. Information: people have a right to be given assistance to help them understand and use health information and to access their own health information—unless that relates to their own health records of course. Privacy: people have a right to have their personal privacy respected—unless that relates to their health records.

What this bill does is undermine both the principle of patient-centred care and the Australian Charter of Healthcare Rights. I am obviously not usually one to praise government, federal or state, but on the odd occasion when they do get things right, I like to give them credit to encourage them to keep doing it. On that topic the federal government deserve some credit. When they introduced the My Health Record system they included an option to opt out, which about 10 per cent of Australians chose to do. The other thing that My Health Record allows is for people to view their medical information and check it for accuracy as well as selecting which specific bits of information they want included. In other words, the federal My Health Record attempts to give effect to both the principle of patient-centred care and the rights enshrined in the Australian Charter of Healthcare Rights, whereas this bill seeks to undermine those rights and principles. The federal scheme, which is not without its own issues, also demonstrates that it is possible to have a functional system that allows for streamlined digital health information sharing and to also respect privacy and involve people in the management of their health information. The amendments that the Liberal Democrats are introducing seek to rectify this in this bill.

I would like to take a moment to thank David Limbrick and his team, who are very passionate about this bill and did the initial work on it. I know that David is quite unhappy about missing this debate and this vote.

Our amendment, rather than having a clause with the title ‘No consent required’, would ensure that only people who have provided explicit consent would be included in the scheme. We did not want to create a binary choice, however, as some people might be very enthusiastic about including some health information that might be relevant if they were to experience a health emergency but not other information, such as whether they have received an abortion, been a victim of sexual violence or recovered from drug addiction. Therefore our amendments allow for people to select which information is included in the database in a similar way to My Health Record. We also wanted to allow a process that did not disenfranchise people who might have complex circumstances or poor English language skills or be otherwise disadvantaged and might not know about the scheme or how to participate. The last part of our amendment addresses this by ensuring that people could opt in with the assistance of a GP or healthcare provider. This is exactly what patient-centred care is supposed to be.

When it comes to concerns about this bill, you do not have to take my word for it. Liberty Victoria president Michael Stanton has called for an opt-in scheme. The Law Institute of Victoria has called for the bill to be withdrawn for further consultation. The Health Issues Centre, a consumer advocacy organisation that has conducted consultations with service users, also expressed concerns with this bill, as did the Australian Privacy Foundation and the Australian Doctors Federation. While they have not been quoted in the media, we also consulted with the Victorian Alcohol and Drug Association, VADA, the peak body for drug and alcohol treatment centres. While they could see the value in sharing health information, they expressed concern that people who use drugs may be, due to stigma, reluctant to seek medical help due to the risk of this information being shared.

I would like to see something like this bill passed. I agree that improvements in this area could improve efficiency and outcomes in healthcare delivery and could save lives, but I want it to pass in a form that respects people’s autonomy and consent. The Liberal Democrats will not be supporting this bill in its current form, and I urge members to support our amendments.

Ms TAYLOR (Southern Metropolitan) (17:13): I move:

That debate be adjourned until later this day.

Motion agreed to and debate adjourned until later this day.