Hansard Of Yesterday’s Proceedings In The Senate. Decide For Yourself If It Makes Much Sense How The Opposition and Green Senators Voted.

Here is the initial link.

Personally Controlled Electronic Health Records Bill 2011, Personally Controlled Electronic Health Records (Consequential Amendments) Bill 2011

In what I provide here I have focussed on the Opposition and Greens Speeches and the interesting answers to some questions. The fascinating thing is that there are a large number of concerns raised but that the whole thing just goes through! All the Labor Senators did was say how wonderful it all will be and how good it was the Tassie Health System was being ‘bailed-out’!

Senator FIERRAVANTI-WELLS (New South Wales) (13:38): I rise to speak on the Personally Controlled Electronic Health Records Bill 2011 and the Personally Controlled Electronic Health Records (Consequential Amendments) Bill 2011. The coalition will not be opposing either of the bills or the amendments to the bills being introduced.

Can I, at the outset, say that the coalition has a strong record on investing and delivering in e-health. For example, it was under a coalition government that the computerisation of general practice increased from 17 per cent in 1997 to 94 per cent in 2007. This was achieved through a $740 million investment over those years. The coalition has always supported the concept of shared electronic health records. Indeed, it was the coalition that originally started the focus on a shared electronic health record. At this point, I pay tribute to the work of past health ministers Michael Wooldridge, Kay Patterson and Tony Abbott, who did a lot of work in this area.

Unfortunately, despite the focus and direction that was established under the Howard government towards e-health, Minister Roxon and the Labor Party's implementation of the system since taking government in 2007 has received severe criticism from industry for its poor management of the programs being developed. One only has to look at the press in recent days to see that this rollout still has major problems—not that that is surprising given the record of both the Rudd and the Gillard Labor governments in quite a number of areas of health.

It is the government's fault that we are now at this point where we will not be ready to go on 1 July. I draw an analogy with the GST. When it was introduced, the legislation had been in place for 12 months before the start date; whereas it is very, very clear that we have so little to show at this point because of the government's poor track record here. Basically, this government has been gradually winding back expectations of what will be available on 1 July. In fact, there will not be much at all. It was so typical of Kevin Rudd to go for the big bang approach. Yesterday we were talking about his so-called health reform as the incoming Prime Minister. He had the grand plan, but we realise that there was not even anything about it written on the back of an envelope. It is the same thing with e-health. He wanted to go for the big bang approach, but as we approach 1 July there will not be much to show for it.

One only needs to look at an article in today's Australian entitled 'E-health record service delayed by incomplete infrastructure'. Here we have an article in the Australian today telling us that the plans that Minister Plibersek had to mark the start of the $1.1 billion e-health records service are on hold as key parts of the system are not ready for the much feted 1 July launch. I quote:

Sources who declined to be named— I am not surprised— say a ceremony planned at St Vincent's Hospital in Sydney on Monday, July 2—the first working day of the new system—has been cancelled.

The minister's office was tight-lipped when The Australian asked whether the event had been postponed to a later date.

This, of course, is not surprising. The spokesman for the minister tells us, 'We look forward to the launch of e-health', but we do not know when that launch is going to be. The pilot sites of e-health that were reported last month—and one of the most successful had apparently been at St Vincent's and Mater Health in Sydney, which lends credence to the launch being there—had recruited only 4,446 consumers to its East Sydney Connect shared e-record out of the hoped for 46,800 participants.

There was no comment at all from the minister or her spokesperson in relation to the recent visit by Mr Peter Fleming, the Chief Executive of the National E-health Transition Authority, to deliver the bad news. This, understandably, includes the lack of readiness of the national IT infrastructure that is being built by NEHTA according to specifications, at a cost of $91 million, and that is yet to go live. Here we are, a couple of weeks before 1 July and, no, we are not going live on e-health—which I thought would have been obvious. We know that there are still some critical user verification, authentication, issues. We are going to an interim system, which is going to be provided by Medicare. You cannot go online to register. You can do it by phone or in person at the Medicare office, but you cannot do it online. Also the records system is unlikely to be operational any time soon. So there was a great e-health launch with a great big bang, but we are not seeing very much for our money.

Meanwhile, the costs to take e-health to this point have been topped up to $1.1 billion. The recent budget allocation was of another $224 million and another $50 million for adoption by Medicare Locals. We do not know what Medicare Locals are going to do, let alone what they are going to do in the e-health space. And of course it is more than doubling previous commitments.

Since 2007 there have been problems upon problems in relation to how this government has rolled out e-health. Just to name a few of those problems, the government has repeatedly stated that it would be able to take the user registrations from 1 July this year. Of course, we know that that is not going to happen. One industry expert has been quoted as stating that it will be many years before the system is ubiquitous. Like with so many other announcements by this government, they announced a major project and now they are scrambling to meet their own deadlines.

Legislation was brought on for debate in the House of Representatives long before the Senate inquiry into these bills had concluded. The Senate inquiry in its public hearing on 6 February heard testimony highlighting quite a number of stakeholder concerns with these bills and yet the government pressed on debating them in the House.

Let us just go to some of those concerns. These concerns were outlined by, in particular, the dissenting report by the coalition senators. It indicates that:

There is currently a concerning dissonance between the assurances of the Government and the very real concerns raised by practitioners and experts in the e-health industry.

Naturally the coalition has been concerned that the government's political need for the big bang approach to introducing e-health on a given date is being given primacy over common sense and a proper rollout of the system. The majority of the witnesses that appeared before the Senate inquiry expressed serious concerns with the process so far and the consequences of the legislation if it were to proceed in its present form.

Those concerns broadly covered four major issues: functionality and interoperability of the system; confidence of consumers and clinicians in the proposed e-health system; governance and conflicts-of-interest problems in the system designed to hold the health records of every Australian; and risk and patient safety. These four major concerns are the very spine of a high-quality and safe system and yet in the Senate inquiry a very short period of time ago many witnesses questioned aspects of the potential for successful adoption, functionality and operability of the system within the legislated system, particularly within the time frame. Certainly the major concerns were about adoption, functionality and interoperability.

Issues were raised in the Senate inquiry about the absence of no-access controls, which go to the very heart of the system and further undercut the claims that have been made by the Department of Health and Ageing and NEHTA that the key design features of the system are present. Some have not been. Consumer concerns were raised, and they were also reported. There was much criticism of the consumer complaints provision of the proposed legislation. As I said, issues were raised pertaining to structure and transparency.

A point that was highlighted by coalition senators and raised in evidence as well was that:

… NeHTA is not subject to the standard Government accountability processes, including FOI, this has led to perceived culture of secrecy and a lack of responsiveness to key stakeholders around strategic issues.

Privacy has been a major issue. The Information Commissioner also raised concerns about the adequacy of the proposed legislation in dealing with data breaches. None of these were adequately dealt with in the legislation.

Also there are unanswered questions about medical indemnity and legal liability and the concern that the government has not developed satisfactory processes. There are clearly doubts about the liability in the event of medical misadventure predicated on information contained in the system. All of this casts doubt on the integrity and viability of the proposed legislation.

There is a concern about risks to patient safety. Patient safety is the bedrock of any health system. Those concerns were also highlighted in evidence to the inquiry. They came from industry experts, clinicians, consumers and privacy advocates. Many stakeholders basically said that they had lost confidence in those who were developing the e-health system.

At that stage, when the report was finalised by the Senate, we were barely four months away. We are now two weeks away and we are still debating this issue and concerns are being raised about the system. As I said, with all these concerns, it would have been prudent for the Minister for Health and the government to defer debate on these bills until the Senate inquiry had publicly reported on its findings. Instead, the legislation was rushed through and now we have amendments to the legislation which have to pick up problems. Some of those problems are yet to be resolved and I would like to highlight a number of them that are still of concern. There are concerns about the costs so far and the ongoing funding for NEHTA. I think it is very important in the current economic climate for the government to come clean on the future long-term costs of managing and operating the system. We know that NEHTA's funding agreement expires on 30 June, the day before the system is supposed to go live on 1 July. The Standing Council on Health, as part of the COAG process, has agreed to fund NEHTA after 30 June, but no details have been released as to the level of funding agreed to. Until the budget was released, this uncertainty prevailed.

I have referred to other measures that have been announced. For example, there has been no comment or discussion on the long-term costs relating to the ongoing maintenance of the system, upgrades to the system or the provision of help desk or support staff for the system. One only needs to look at the situation in the United Kingdom, where they spent £12 billion on the e-health record equivalent, which was scrapped in late 2011. This is not a scenario that we can afford to impose on Australia's taxpayers.

When you look at the evidence that was given to the Senate committee and the concerns that were raised by software vendors, they were almost unanimous in their concerns about NEHTA's and their own legal liabilities under the proposed legislation. So I think this is of great concern.

Another concern that has been regularly raised is the lack of encouragement or incentives for general practitioners to create the shared health summaries which are proposed to be part of the system. The health summary is a collection of a patient's medical history and will make up one important part of the system. There have been concerns in relation to confusion from general practitioners over whether they will be able to claim the higher Medicare rebate that would normally apply if setting up an e-health record pushes the consultation into a higher band. There are a number of stakeholders who claim that there was a significant lack of proper and thorough consultation with them. So the list of concerns goes on.

In the remaining time I want to focus on the amendments. As I indicated, the coalition will support the amendments. Whilst these amendments go towards addressing some of the recommendations of the Senate inquiry, there are still some major issues to be looked at, certainly given the media reports that are out there today, to ensure that this system is effectively rolled out.

I would like to underline for the record that it was the coalition that originally referred these bills for inquiry. As I said, the bills were forced through the House of Representatives before the Senate inquiry's report had been handed down. At the time, the coalition called for the deferral of the debate in the House of Reps until the Senate inquiry had been completed, and perhaps we would have saved ourselves a lot of time and angst. But of course the government refused this call and forced the debate regardless. It would have been easier to correct the legislation rather than having to do a patch-up job, and it is very clear now that the bills do not actually achieve all that needs to be done. This is just another example of the incompetence of this government. As we saw today, this is a government that cannot manage its own legislative agenda. How can we expect it to manage something as important as this, manage the budget or indeed manage our country? But we will not go there at this point.

These amendments were introduced following the committee's inquiry. The amendments seek to broaden the scope of the future review of the legislation in two years time, which will include reviewing the identity of the system operator, alternative governance structures for the system and the opt-in nature of the system. I know, having participated in a number of inquiries, these issues were raised directly as a result of various community affairs committee inquiries. Hopefully the amendments will also strengthen the consultation that will be required before PCEHR rules are made and adopted.

One of the major concerns of the Senate inquiry surrounded privacy. Whilst these amendments go some way to resolving particular issues which were raised in the inquiry by clarifying and strengthening the Australian Information Commissioner's functions and powers with respect to investigating breaches, it will be interesting and important to see how these privacy concerns roll out. Under the amendments, the role of the system operator in providing de-identified data for research and public health purposes will be clarified. Provisions contained within the amendments will also strengthen consent arrangements in a number of circumstances. There are also a number of other minor technical amendments. As I said, the coalition will not be opposing these bills.

-----

Senator DI NATALE (Victoria) (15:59): I am pleased to be able to rise today to continue my remarks on the Personally Controlled Electronic Health Records Bill 2011 and the Personally Controlled Electronic Health Records Bill (Consequential Amendments) Bill 2011. It is legislation that advances Australia down the road towards a much more modern, efficient and better connected health system. We know in this day and age, with the use of technology, that most Australians are familiar with communication technology. Kids and grandparents are all thoroughly familiar with the world of instant connectivity. My young 3½-year-old knows his way around an iPhone. Not my grandmother, but many grandmothers are now using the internet as part of their daily lives. It has become a part of the world we live in.

I think that people would be shocked at how technologically naive and how technologically primitive our health system is when we compare the role that technologies play in our daily lives. It would be natural to assume when you move between a GP, a specialist, your hospital, allied health professionals and so on that the health information collected in each of those places follows you around electronically. But I have to say that nothing could be further from the truth. If the information does follow you, it often goes in the post. It might sit on a fax machine somewhere or it might gather dust in medical archives. If you do get your hands on it, it is often incomplete and occasionally it is completely illegible.

In a former life, I have spent time as a medical professional and spent countless hours with some of my colleagues and other professionals trying to decipher notes from other medical colleagues. I do not have the best handwriting in the world, but some of my colleagues' handwriting more closely resembles Egyptian hieroglyphics than it does English. I have spent time contacting medical record departments and other doctors simply because I could not get access to up-to-date information, or the information was completely indecipherable. So it is important that we make change in this area.

There is also the situation where someone might present with a history of acute pain. I have been in that situation, where people present with acute pain and request analgesia, often opiate analgesia. One of the problems is that you cannot be sure whether the history is genuine or whether it is in fact somebody who is seeking opiates because they have a problem with dependence. It is a phenomenon known as 'doctor shopping'. For decades we have been talking about resolving this issue and getting up-to-date PBS information so that healthcare professionals can make these sorts of decisions with confidence. The electronic health record has the potential to realise that huge area where we can make those clinical decisions with confidence.

In short, the system we have in this country of health technology communication results in two enormous problems. It results in major inefficiencies within the health system, which of course impose an enormous cost. More importantly, it results in serious medical errors, some of which are life threatening and occasionally fatal. Every single day, because of inadequate information, people will get medication that they are allergic to and they will get drugs that interact negatively with other drugs that they are taking, causing major side effects. Tests will sometimes be ordered that are completely unnecessary because they have been done recently. With the full information at hand, the test would not have been ordered in the first place. Sometimes you will see a patient who has just had treatment from another healthcare professional or from hospital, and that information will make a huge difference in terms of the clinical decisions you make as a healthcare professional.

The savings estimated to be realised from the e-health implementation amount to about $11½ billion by 2025. That, I think, is a fairly conservative estimate. I have seen some people suggest that the figure may in fact be much, much higher, when you consider the duplication that occurs in medication, pathology and so on and savings in terms of primary care visits and a range of other potential benefits. As I said, cost is not the main reason that we need to take action in this area. The health system as it stands, because of the inadequate communication, results in damage to the health and wellbeing of Australian patients every day. Nearly 200,000 people are admitted to hospital every year because of medication errors. Many of those are avoidable and would have been avoided if we had access to up-to-date information. Lives are lost on a daily basis because of these sorts of errors, and it has to change. If you are wheeled into an emergency department, you want to know that the doctors treating you have access to all of the available information that will result in the best course of care for you. These issues are often a matter of life and death.

Times have changed. We have the technical know-how to fix this problem. We should see it in the same way as we see other health technologies. We accept that we would not deny cost-effective, life-saving medical technology in any other area of health care and we should not deny it in communication technologies either.

This legislation puts in place a crucial framework for e-health reform. In principle, the move towards e-health and the creation of the personally controlled electronic health record is not controversial. In fact, we heard recently that the coalition support the bill. I look forward to hearing from them about their comprehensive plan for e-health. It is very, very easy in this place to criticise; it is easy and it is cheap. What is more difficult is to be constructive and to provide solutions. So I am looking forward to hearing about the opposition's comprehensive plan for e-health.

The benefits that flow from the better use of communications technology in health care are obvious. As I said, they are potentially life saving. Everybody agrees that we need to make progress. While the government, doctors, consumer groups and even the opposition are in agreement on the principle of e-health, as with most reforms, the devil will be in the detail. The personally controlled electronic health record is the centrepiece of Australia's e-health agenda. Conceptually it is the central point of health information for every Australian. It brings together health information such as the medications that people take, the visits they have had to healthcare professionals—GPs and other allied health professionals—what was done at those visits, hospital information and important discharge information. All of this will be brought into the one place so that health professionals can monitor and update it. Once the system is operating, people will have confidence in it, knowing that their doctor, surgeon, allied health professional and so on are all coordinating their care and that they have the most up-to-date, most relevant information available. They will know what tests have been done recently, what pills people are taking and whether people have filled their scripts, and that is important because often a doctor issues a script but does not know whether in fact the script has been filled. That may be because you cannot afford it or because you are having a side effect and have been reluctant to tell your GP. All of those things are potential advantages through e-health. We will be able to see X-rays and other scans that have been done and monitor them against each other over time. That is important because small changes can mark important pathologies. It is going to be a comprehensive change.

Most importantly, it is a personally controlled record. It is not mandatory; individuals have the opportunity to decide for themselves whether they wish to take part. I am very confident that, over time, as the benefits become clear, more and more people will take up an electronic record and we will have a better health system as a result. People will have control over who can see their record. We know that personal details are private and must remain so, and I am confident that the provisions are in place to ensure that that happens.

It is a transformative technology as well. It has the potential to empower individuals in a way that often modern medicine does not. One of the criticisms of modern medicine is that it is a disempowering process. You hand over almost total control, in some instances, to the healthcare professional who is monitoring and treating your condition, but in this case individuals have the information at hand. They can access that information as they need to and they can become more informed, and they have an opportunity to have an interaction with their healthcare professional, which does not exist at the moment.

The details of access are controlled, such as that the defaults are left to the system operator to determine, and that is important, because I assume that most people will use the default access controls. I am pleased that the government has acknowledged just how important this is, that consultation will be a critical part of this process and that they will suggest amendments to this effect. If all goes well, millions of Australians will be entrusting the system with their most personal details. It could not be more crucial that consumers have faith that their privacy will be respected.

We hope that individuals will make an informed choice and get together with their nominated provider, which in most cases will be a GP, but not always, and that they will go through the steps to create and populate their health record in a shared health summary. They will be told how to control the information and who can see it. Of course, the more information you share the better the clinical decisions are likely to be, but it is always balanced against the patient's right to privacy, so we have to give clear advice to people that they must decide the most appropriate way to implement these sorts of decisions.

Shortly, Australians will be able to sign up for the patient-controlled electronic health record directly online, through Medicare, their GP or their nominated provider. They will prepare a shared health summary so that other clinicians can see at a glance the information they need to know about an individual's health. It is important to know that individuals will have control over what goes on the record and that they will be able to decide who gets to see it. You will be able to access the record online and make your own notes. At all times, control of the electronic health record is in the hands of the individual. If you do not want to participate, the choice remains yours.

Of course, there are some issues. I know that it is going to be some time before the health information systems used within doctors' surgeries are integrated with the PCEHR. Following that, hopefully we will see hospitals, radiologists, pathologists, pharmacists and so on included so that we get a much more integrated system. I for one would have liked to have seen this happen a little earlier. Obviously, since 1 July is the deadline, it would have been nice if the whole shebang were ready to go. It is not. It will be, as we have heard, a 'soft launch'. In fact, it is becoming softer by the day, but that is not of great concern to us. Ultimately a system that starts small and improves with frequent iterations is probably more likely to be successful.

It do not know of too many IT projects that go smoothly. I think that IT projects are a bit like construction projects. There are often unforeseen hiccups, so I think it will be most likely that we will need to iron out some bugs through this process. While the profession, the industry and other stakeholders continue work on these, I think it gives an opportunity for consumers to become accustomed to the idea of the electronic health record.

We do have some concerns with this legislation. As I said, the privacy controls are not fully specified by the bill but are to be developed by the system operator. We wanted to ensure that consultation around the default access controls would be conducted, and we are pleased that this will now happen. The record will also serve as an enormous repository of medical data, so, if there were a way the data could be used for research purposes that protects privacy and anonymity but also provides the opportunity to improve our health system and get valuable information, then I think we should go for it. I am really pleased that this is happening at a time when the Association of Australian Medical Research Institutes is currently looking very keenly at the McKeon review. One of the purposes of that review is to look at how we can improve integration between medical research and the health system.

The key roles of medical research as outlined by the Association of Australian Medical Research Institutes is to reduce the burden of disease by improving our understanding of the drivers of health—risky behaviours and so on—to improve the quality of health services, to improve the efficiency of health service delivery and so on. Medical research in this country plays a huge role—in fact, we are world leaders in that area—and the patient-controlled electronic health record has an opportunity to allow that to continue to grow and develop. We have heard some other concerns about the electronic health record. Some in the industry have been critical of the NEHTA, the National E-Health Transition Authority. We have heard criticisms of its governance structure and criticism of its approach to consultation. We have heard from industry stakeholders who feel that the development of technical specifications was poorly handled. We are aware of that. We have also heard that there were concerns around the governance of the PCEHR. We agree that there is the potential for a conflict of interest when the functions of the system operator are invested in the secretary of the department. It is an issue of accountability and we are sympathetic to suggestions that the system operator should exist independently. We are pleased that there will be a review after two years. As we have said, the devil is in the detail, so we will be watching very closely over the next two years.

I am also aware of some of the reservations that my former profession has around the issue of the liability of doctors who use the electronic record. Will they need to read the entire file of every patient at each consultation? If they do not, will they be held liable if there is a problem? There are some issues to resolve, but I am confident that the government, the medical establishment and other stakeholders will be able to work together to solve this dilemma.

The PCEHR also puts in place strict controls about who can see a record. It records who had access and when. We value the fact that consumers want their privacy to be respected, but that comes at a cost. The cost in this case is complexity. A small medical practice might have a single computer—one or two workstations—which makes this level of access control problematic. That is another issue that needs to be tackled.

There are bound to be delays, probably some mistakes, complaints and poor process encountered along the way. It is a big and expensive project with a lot of moving parts. It was not until we looked at this issue more closely that we began to get an appreciation of just how difficult and complex this issue is, but we do need to get it underway. We know that it is critical.

Modern medicine has made remarkable progress in a number of areas. We have had huge advances in medical technology. Life expectancy has increased, in part because of those advances. We have remarkable things, things that were previously the stuff of science fiction. Endoscopy, nuclear medicine, advances in genetics and so on are mainstream technologies today and they help us with the diagnosis and treatment of potentially fatal diseases. But there remains a glaring hole in the health system—that is, that in a 21st century health system we have what I consider to be in some instances 19th century communications practices. This bill provides the framework for improving that situation, for righting that wrong, and it is for those reasons that the Greens commend it to the Senate.

-----

Senator EGGLESTON (Western Australia) (16:31): Earlier this month I had the opportunity to travel to London for a Commonwealth Economic Forum and, as is obviously the case when leaving the country for foreign travel, the most important thing a person does is pass through immigration. I was very impressed by the fact that in our airports these days an electronic system looks at passports and confirms the identity of individuals. That is an example of IT being used in a very positive way. I think the introduction of electronic health records is a similar technological advance which will lead to greater efficiencies in the health industry, especially when a person away from their home base is struck by illness and their medical records can be available through the system of e-health records.

As has been said by other speakers, the coalition supports the concept of personally controlled electronic health records and the amendments to this bill. There is no doubt that the benefits of having an accessible electronic health record available around the country are great and have been referred to by many other speakers. This system is commonly referred to as e-health. It is certainly an exciting advancement, extending the scope of primary health care and protecting patients who are travelling. The efficiencies e-health can create are not new concepts to the coalition. Under the last coalition government, computerisation of general practice increased from 17 per cent in 1997 to about 94 per cent 10 years later. That meant that 94 per cent of general practices around the country had computers and patient records were kept much more systematically. The data within them was much more easily accessible to medical practitioners and to people doing research, for example, into the efficacy of drugs for the treatment of hypertension in which a general practice might have been participating. Accessing the records of the serial measurements of a patient's blood pressure is much easier with computers in general practice. Linking general practices to make up a huge pool of patients has been used widely in the United Kingdom to test new drugs, to record outcomes and to file those outcomes back to the university or wherever the trial was being facilitated, all linked by the internet.

The real value of this system is that when a patient who is away from their home becomes ill it is possible with an e-health record system that they can go to a hospital or perhaps to a medical practice anywhere in the country where their medical records will be accessible. This will mean that people can be treated much more quickly and effectively because the detail of their histories will be accessible. Very often people are not as aware of the details of their medical history as one might hope or imagine they would be. That is going to be one of the great benefits of electronic health records.

It has been forecast that by 2020 e-health capabilities could save up to $7.6 billion a year in health costs by reducing duplication and errors, by improving productivity and by providing better adherence to best practice principles. The government's own numbers suggest that the benefits of e-health records alone in Australia would be $11.5 billion saved by the year 2025. That is an incredibly large figure which in itself justifies completely the introduction of the system.

In addition, the same report suggests that a full e-health program can help avoid up to 5,000 deaths annually once the system is in full operation. That is a very important and practical consideration as well. It again shows how beneficial this program potentially will be to the Australian public.

The report further states that, annually, a fully implemented e-health system could avoid up to two million primary care and outpatients visits, 500,000 emergency department visits and 310,000 hospital admissions. They are amazing figures that testify to the efficiencies and cost savings that this system will introduce to our health system.

Importantly, it will also mean that patients have their entire medical history available to them anywhere they travel. A patient with a patient-controlled electronic health record who becomes ill while travelling has their full medical history available to the doctor or emergency department they visit. These are very important benefits.

The downside of the electronic health record system is the protection of patient privacy. There are very legitimate concerns about patient privacy in relation to the introduction of electronic health records. We all know that it is very easy to hack into computer systems. Persons' health records are often very important to their capability of getting a job or insurance. People are quite rightly concerned that the privacy of their health records should be protected, not only for those reasons but just for the general issue of privacy and confidentiality of a person's health records and for the protection of the privacy of the doctor-patient relationship. For this reason the issue of privacy is the biggest concern that people have in association with the idea of the introduction of electronic health records. I think it is very important that the government and those who are responsible for setting up this system make sure that the question of privacy is uppermost in their minds and that the absolute confidentiality of health records is protected. It is a very important consideration.

The idea of electronic health records, and having wide accessibility to them, is one that is under consideration around the world. When I was at the United Nations in 2010, I met a British doctor who was interested in an e-health system in which medical records could be accessible anywhere in the world. In my view it is very bold thinking of his to contemplate a system whereby wherever you were in the world your health records could be accessed through the internet by responsible individuals in a hospital. It would be very hard to set up such a system, but not impossible in this day and age.

Unfortunately, the British experiment with e-health was not a great success. After expending a great deal of money, unfortunately the United Kingdom's system was scrapped, in late 2011. The British had spent some $12 billion on their e-health equivalent of this proposal. So we do have to make sure that the system is efficiently managed and that the concerns for patient privacy are respected. But overall I think the benefits that this system will bring to Australia and to the Australian public are great, and the coalition endorses this system, as I do as a former medical practitioner. I can see great benefits in having access at your fingertips to a patient's records and to the records of an individual from some other part of the country who might come in to see you. It is certainly going to be an interesting exercise to see how this system develops. But I am sure that, with goodwill and concern, once this system is up and running we will have a very useful tool to ensure that the health of Australians is protected wherever they travel in this country.

-----

Senator MASON (Queensland) (16:57): The coalition opposition supports the Personally Controlled Electronic Health Records Bill 2011 and the Personally Controlled Electronic Health Records (Consequential Amendments) Bill 2011. A personally controlled electronic health record system is, let us face it, a very good idea. Any improvement to mankind's armoury against the empire of disease is a very good thing as well. Senators in this debate this afternoon have spoken about the advantages of such a system, and indeed it does have advantages. I accept that this system will assist in effective, efficient and timely patient care. I accept that this system will save time and allow medical practitioners to rely on information noted by other doctors rather than forcing patients to relay their medical history. I accept that the system could dramatically reduce the number of hospital visits each year. I accept that the system could also help prevent thousands of deaths annually when the system is fully operational, another significant advantage provided by e-health.

We also should not forget about the dollars. It is very important in these times of fiscal stringency to save taxpayer dollars. This system may well save billions of dollars over the next 10 to 15 years, by reducing duplication and errors, improving productivity and encouraging stricter adherence to world's best practice. These are all good things. I know that coalition senators and members such as Senator Fierravanti-Wells, Dr Southcott in the other place and Senator Sue Boyce have done a lot of work on this particular issue, and I want to congratulate all of them.

But the opposition does have some reservations. Once again we encounter the standard problem with this government. They come up with some very good ideas now and then, but that is often marred by lack of attention to detail and poor implementation. You will recall that it was the coalition that initiated the focus on shared electronic health records. But again this is a program that the Labor government has not fully developed. I listened before to Senator Di Natale and I loved his use of the words 'soft launch'. We now know that even though the system is being launched on 1 July this year, it is being 'soft launched', which I think means it will be quite some time before the system is ubiquitous. I think that is probably right. But I liked the language—slightly Orwellian, but it never gets by the opposition. We are not quite sure about the costs. The government has not been too forthcoming about the long-term costs of this technology. We know it is expensive, but that does not mean it is not worth it. Already it has been raised in debate that the United Kingdom spent about $12 billion on e-health records and that money has now largely been scrapped. It would not be a good thing for this government to go the same way. I am hoping the Australian Labor Party is not like the British Labour Party in this context—I am in a generous mood and so I will not assume it is.

An opposition senator: You always are.

Senator MASON: Yes, I always am! Some of my colleagues have raised the issue of stakeholder use and how some will see it as a make-work scheme for medical practitioners with little incentive to create the shared health summaries. That is a potential problem and of course there is a reliance on general practitioners to drive the uptake. Some have already asked this afternoon why would they bother doing that. It will take time, and they will see little or no reward for their efforts. Over time, perhaps, that will change, but, initially, I think it is fair to say, it will be an issue. My colleagues have raised—Senator Fierravanti-Wells raised it well and eloquently—the lack of stakeholder consultation. Reports from a number of key stakeholders indicate there was not thorough consultation and they had difficulty communicating with the National E-Health Transition Authority.

They are all important points, and I know that the Senate has discussed them well this afternoon. I congratulate all my colleagues for their contributions in this debate. But I want to concentrate on one particular issue, if I might. As Senator Polley just recognised—and I agree with her—health records are among the most sensitive records citizens give to a doctor, but governments potentially have access too. They hold potentially the most personal, sensitive information. So, of course, there are significant privacy concerns about these e-health records—about access, about their security, about their veracity, about the control over contents, the use and the potential use of these e-health records. All those issues are legitimate and they are all live in this debate.

This is one of those absolutely classic Senate debates because this debate reflects that most fundamental tension in regulating a liberal democracy—that is, the quest for individual autonomy and individual privacy on the part of every citizen versus the impulse of a community and social responsibility. That tension between the two—it is not a dichotomy; it is a tension—is being played out in this debate. While the government does have a moral responsibility to look after their citizens—and e-health is a very good example of that—citizens do not want the state to intrude excessively upon their autonomy in extracting that information. Somewhere in that tension lies the answer and lies the balance. Exactly where those boundaries should be drawn will always be widely contested and hence the privacy concerns raised by citizens about these bills.

The government is quite right to suggest, as they have this afternoon, that the government's decision to have an opt-in scheme—I remember discussing an opt-in or opt-out scheme a long time ago, Acting Deputy President Boyce, with you and others. But the government having chosen that—that is, people have to choose to register to have a personally-controlled electronic health record—it does raise the question of privacy protections. Privacy remains a concern, but with an opt-in scheme they are strengthened, and I acknowledge that. In my view the government should be congratulated for that.

Last week I happened to watch the 7.30 on the ABC—even though I am in the opposition, I do watch the ABC—with Professor Chris Puplick, the former New South Wales Privacy Commissioner, and he was asked about this legislation.

Senator Feeney: And former Liberal Party senator.

Senator MASON: Yes, and former Liberal Party senator and former President of the New South Wales Anti-Discrimination Board as well—appointed by a state Labor government. What he said was very interesting. He said that just like the internet, once the information is out there it will always be available to someone somewhere, regardless of restrictions and limitations. That, of course, is the problem. There is an oft-quoted saying among IT people that goes along these lines: information wants to be set free, but that does not mean that people necessarily want information to be free. Sometimes that is for good reasons—like patients wanting to protect their data—or sometimes for the wrong reasons, like authoritarian governments wanting to maintain their grip on power. It simply expresses the significant reality that once a genie is out of the bottle it is impossible to put it back in. When information is out, when it is set free, you cannot put it back in, because—guess what?—it is everywhere, particularly today with the promiscuous exchange of information, garnered by the internet, social media and other media enterprises. The fact is that these days information when leaked or when out is out forever. The information to be contained within this system is of an intensely personal and private nature, much of which may never leave the inner sanctum of a doctor's surgery. Given that the personal electronic health records system will, by its nature, exponentially increase the number of people with access to these details, it is not unreasonable for patients to fear that the risk of information being obtained by someone other than their doctor will also increase—and that is the concern. People are entitled to be concerned that their medical history could fall into hands in which it does not necessarily belong. Let us face it: in the profession many of us work in, the profession of politics, health records could devastate or potentially even destroy a political career. As examples take evidence of mental illness or evidence that someone is suffering from cancer or evidence that perhaps a woman at one stage even had an abortion or evidence that someone has contracted a sexually transmitted disease at some stage. All of these could be very embarrassing and would certainly be compromising and potentially they could destroy a political or a corporate or a legal or other career. That is why these records are so important and why their protection is absolutely and utterly vital. If they are released, even if they are released inadvertently, people would become subject to prejudice or subject potentially to blackmail. It could have detrimental impacts on their relationships, their work or their insurance and so on. There must be no unauthorised access.

It was not long ago, as you would recall, Madam Acting Deputy President, that we had the example of the stolen laptop in the United Kingdom, and this is not the only story of its kind. In about the middle of last year a laptop containing health information on over 8½ million patients and 18 million hospital visits, operations and procedures was stolen from a National Health Service building in London. The data did not contain names but it did include postcode, gender and age details. There were concerns at the time that the information could be used against the subjects by, for example, blackmail over sensitive medical issues and so forth. That is the sort of problem that is possible, hence the enormous concern as to privacy.

I note Senator Polley, when speaking before, mentioned the United States health system. The United States electronic health record system has been described as 'Wikileaks on steroids'. But while Australia's privacy laws generally do offer greater protection than do those in the United States, it is an interesting and concerning analogy for this kind of system. It is certainly a concerning analogy at least. Even with access to information by authorised users, so by those authorised to look at the information, there are still privacy concerns. Who owns the information? Can I change information that I deem to be wrong or inaccurate? Can I do that? Can I do that unilaterally? Can I restrict access by others to certain types of information? For example, I might not want my GP to know about my mental illness—

Senator Scullion: Or your drug addiction.

Senator MASON: Indeed, my drug addiction or some disease that I have contracted or whatever else. It could be embarrassing. Again, where do we draw the line? How does the regime in this bill interact with, in particular, the provisions of the Privacy Act, which, of course, is the ultimate protector of privacy in this country? All these issues are on the table. I accept what the government has said, that there will be at least a review of these issues in two years time, and again I say I think that is a very good thing because within that time of the next two years the true utility of this law can be addressed. I simply conclude by saying that for the good health of our nation I hope the government—for that matter any government of whatever political complexion—will address these privacy issues with very great discretion. Not to do so could lead to compromising of privacy and a shocking infringement of individual rights.

-----

Senator BOYCE (Queensland) (17:22): It is interesting that Senator Brown used the word 'rollout' in her contribution to this debate on the Personally Controlled Electronic Health Records Bill 2011 and the Personally Controlled Electronic Health Records (Consequential Amendments) Bill 2011. In fact, there is no rollout. There is simply a system in which you can lodge your interest to be involved in what is happening on 1 July. It reminds us of this government's 'ability' to roll out the NBN in Tasmania. It leads us to the same sort of mismanagement, waste and inability to implement which we saw during that rollout and which is now happening with this rollout. I certainly share Senator Brown's hope that e-health will be useful to the people of Tasmania, but I do not have any certainty around that. I also hope that it will be useful to the people of Queensland, but again I do not have any certainty around that. I hope it will be useful to the people of Australia, but there cannot be any certainty around that either.

As numerous speakers have pointed out this afternoon, e-health is a noble aim. It is certainly something that we should do. Because of the work of successive governments in Australia—our current statistical collection and our work to date on definitions and standardisation of all manner of things within the health area—we are possibly in a better position to do it. We are in a better position than almost any other country in the world to do this well.

But today we are talking about the introduction of the personally controlled e-health records aspect of an e-health system. Once again, we are looking at fantastic rhetoric and zilch delivery, zilch implementation. The personally controlled e-health record system is supposed to start on 1 July. As Senator Di Natale said earlier, it will be a 'soft launch'. It will be a very soft launch. It will be an almost ghostly launch—a Mary Celeste launch—because there is nothing in this ship to launch. It is simply a shell waiting to be populated. Fine. But this government should not go on with nonsense about what is going to happen.

Minister Roxon, the former health minister, talked about the e-health revolution that would be coming. It was in January 2011 when she started talking about the e-health revolution. She said:

After the outstanding success of the e-health conference in Melbourne earlier this month, there is strong momentum behind delivering the Government’s $466.7 million PCEHR system by July 2012.

It is fine for Senator Brown to try to suggest that this system is part of the national health and hospital reforms of this government, but it is in fact as meaningful as almost anything else they have done—which is almost nothing. There has been no real progress. Of course they now have to talk about a soft launch. Having gone from the big bang of 'Wow, we're going to have an e-health system that will be the envy of the world,' they are now saying, 'Well, people can just choose to let us know that they would like to be involved from 1 July.' There is at least some vague hope on that basis that the PCEHR legislation will achieve long term some of what it has set out to achieve.

But it is a complete nonsense for this government to try to claim that this legislation is some sort of a move, a reform, a revolution. They need to fess up to the fact that they could not work out how to do it. They could not work how to get it right and now they are going to take the easy option which was suggested to them all along. But of course this government loves to talk the rhetoric, fail to implement, waste money and mismanage as it goes.

As has been noted by other speakers, the coalition will not be opposing this legislation, because we think the idea of having personally controlled e-health records and a proper e-health system is an excellent idea. We are, however, like many stakeholders outside this place, concerned about this government's ability to implement a sensible system that will work. Despite all the promises made by NEHTA, the transitional authority for this program, and DOHA, the personally controlled e-health record system is simply nowhere near ready to launch. It is an idea still. This government needs to confess that it is still just an idea; it is just a ghost of an e-health system.

Key components of the PCEHR are not finished and are nowhere near being finished. Key issues identified during a number of inquiries—and I note one of them was by the Senate Community Affairs Legislation Committee, of which both you and I are members, Madam Acting Deputy President Moore—such as safety, liability and privacy have not been successfully resolved. The coalition, in its minority report to the PCEHR committee last year, suggested that it would be wise for the government to delay the launch until they knew that they had it right and that some of the systems they were intending to use had been trialled in real-life situations. We were concerned this would be a completely dysfunctional system that would cause more harm than good.

One of the key aspects for a functioning e-health system is the public's confidence in it. If it has serious errors or serious problems in its early days, it will take years to regain the trust of the public. I am told that the National E-Health Transition Authority was called to Minister Plibersek's office in recent weeks and was basically told: 'Stop the spin. It's not ready. It won't be ready. 'Let's wind back the rhetoric and the expectations. Let's start talking about soft launches and people choosing to get involved in registering, but let's stop the nonsense about the e-health revolution.' So we have a complete backtrack by this government.

One thing that has not been wound back is the spending. I am somewhat amused by Senator Carol Brown's view that more than $300 million for the hospital system in Tasmania would be sufficient to overcome the unique challenges of the Tasmanian health system. We have some unique challenges in my home state of Queensland in the health and hospitals system too, where over $1 million a day is being forced to be spent to pay the interest rate on the wages bill of the debacle of a health pay system that the former Bligh government implemented. I think perhaps the unique challenge faced by so many of these hospital systems is their Labor state governments which cannot, as this government cannot, properly implement and effectively discipline their own spending.

Let us look, for example, at the liability and risk issues associated with this legislation. Key medical indemnity insurers are warning GPs not to participate as they could be exposed to a new wave of litigation. Insurers are telling doctors not to use the e-health system and the PCEHRs until the issues are settled. The President of Medical Defence Australia, Julian Rait, said his organisation had serious concerns about the legal liabilities doctors would face if they used the PCEHRs and would 'advise members not to participate until these problems are properly addressed'.

As for safety, the fundamental issue of any medical system, one of the comments that came out of the estimates process was that NEHTA had just one document that it could show to the Senate committee demonstrating its interest and concern in the safety of the PCEHRs. It was called the Clinical safety case report. Thirty-three pages of that 34-page document detailed a huge number of safety risks that the PCEHR system was subject to. On page 32, the document says that 'the feedback to date on the clinical safety recommendations has not described to what degree they have been accepted into the design and if they will be included in future specifications'. So, in fact, none of these safety risks have been properly assessed for their level of danger and what needs to happen to get them properly out of the system. Clearly the question of who is going to be liable if things go wrong has been completely avoided. There is no answer to the question: 'Is the system safe?' There is no system, as I said before, so how are they going to know if it is safe? Yet $1.1 billion has been spent on this.

Just last Friday, we had the extraordinary situation of the CEO of NEHTA, Mr Paul Fleming, announcing that the NASH—the National Authentication Service for Health—was not going to be ready for 1 July. They gave the contract to IBM well over 18 months ago—again, to the distress of the local industry. Medical software providers in Australia were shocked when IBM got the job of providing the NASH. One of them even commented to me: 'They have just gone for the safe option. No-one ever got sacked for hiring IBM.' Apparently someone should get sacked for hiring IBM, because the NASH was due on 30 June and it will not be finished.

In the past, Paul Fleming has described the National Authentication Service for Health as:

… a key foundational component for eHealth in Australia. It is essential that the identity of people and organisations involved in each eHealth transaction can be assured, and this requires high quality digital credentials. The NASH, Australia’s first nationwide secure and authenticated service for healthcare delivery organisations and personnel to exchange sensitive eHealth information, will provide this.

That is the description of the NASH.

In March 2011, NEHTA gave the contract to IBM to design this key foundational component. Guess what? On 15 June, Mr Fleming quite happily said that the fact that the delivery of the NASH has been delayed to a date that no-one can tell us:

… will have no impact on the launch of the personally controlled eHealth records system in July, or the ability for consumers to register for an eHealth record.

Let us note that term 'register'. He went on to say:

Australians will be able to register for an eHealth record in July as intended.

That actually was not what was intended. They were supposed to be able to register and use the e-health system from 1 July. They will not be doing that. That is not what will be happening. And, when queried, Mr Fleming said they did not know when IBM were going to fix the problem and when we would have a NASH to go along with the system. Yet the most serious problems raised were around safety, security and privacy. That is what the NASH is designed to protect.

In the Australian last Friday Karen Dearne said:

THE Gillard government's $1.1 billion e-health records program will launch without the key user verification system in place, with the National E-Health Transition Authority (NEHTA) conceding it has failed to deliver the project on time.

I just find it bizarre that this is what happened. But why should we find it bizarre that providing this and implementing it properly is way beyond the skills of this government or its appointees? As I said earlier, we support this legislation because we believe an e-health system is a national imperative. If it functions properly, it will save the public purse millions. But it has to be done properly, it has to be done intelligently and, far more to the point, it has to be done honestly and transparently. That has not happened to date with the way NEHTA has suggested that not having a key component of e-health ready in time for the so-called launch on 1 July is not a problem. I would love to know when someone is going to take responsibility for NEHTA and for the fact that this has gone from being an e-health revolution in early 2011 through to a 'soft launch' where people can put their names forward to say they would like to be involved if they want to, when and if it finally gets delivered.

I am pleased that the government are now slowing down the implementation of e-health, but I am completely displeased that they cannot simply be honest or transparent about the problems that they have encountered along the way. We are all aware of the problems that have come out of the UK, where over £6 billion was invested and wasted by the former Labour government. To everyone's shock and horror, it could not be reclaimed. It was simply wasted and closed down.

We are in a great position in Australia. We currently have 3.6 million people who are registered to receive primary care with their doctors. We are one of the few countries in the world that can actually tell you we have 3.6 million people registered for primary care by their doctors. So why wouldn't we look at using those people as the starting point—the people who have the chronic healthcare programs with their GPs? Why wouldn't we start with that group? These people would benefit from the fact that they will not have to cart X-rays around with them. They will not have to have test after test. They will not have to tell their story over and over. Why wouldn't we start there instead of creating some sort of money-eating machine that we have no hope of implementing successfully and nationally for so long?

There are so many issues that I think we need to work on with regard to these bills. We will be checking to make sure that the legislation does work as intended over time, that people do have sufficient confidence in the security and safety of the system to actually use it and that clinicians find the system functional for them.

I am disappointed at the approach that has been taken almost consistently by NEHTA, the lack of transparency, the lack of consultation with stakeholders until after the event and the lack of honesty here in suggesting, 'We don't need NASH, really.' Yes, they will get a system cobbled together to get them through, but to say that is as good as the one we have just paid $48 million to IBM for is just bizarre. So let us hope this is a good outcome for Australians.

Selected Questions In Committee

Senator FIERRAVANTI-WELLS (New South Wales) (17:49): Madam Acting Deputy President, I would like, if I could, to ask some questions that pertain to both bills.

The ACTING DEPUTY PRESIDENT ( Senator Moore ): That is fine. Go ahead.

Senator FIERRAVANTI-WELLS: During the debate, Minister, concerns were raised, particularly in relation to privacy, by Senator Boyce and me. Is the government assured that the provisions contained in the amendments go fully to addressing privacy concerns that have been raised not just here but as part of the inquiry by the Senate Community Affairs Legislation Committee. They are of concern and have been of concern throughout this whole process. I really just want to hear, Minister, your assurance that that is the case, particularly in relation to the concerns that were raised in relation to the powers of the Australian Information Commissioner.

Senator McLUCAS (Queensland—Parliamentary Secretary for Disabilities and Carers and Parliamentary Secretary to the Prime Minister) (17:50): The e-health record system will have bank-strength security features, including extremely strong encryption and firewalls. These protections are in line with the very high standards required by both the Department of Defence and the Attorney-General's Department. Paper based records, as we know, can be copied, stolen or modified without anyone knowing. With the e-health record system patients will be able to view a log that shows them every occasion on which their record has been accessed or changed and by whom. Consumers will need a secure password to access the system, which they can invent themselves. The password will then be encrypted, as with internet banking. For even more security, when you log on you will have to enter a personal question to confirm your identity. On top of this, the system will automatically log you off if your session is inactive. As for the question about privacy and security, they are fundamental to the effectiveness of an e-health record system. Unlike the former government's proposal, as I recall, this one is personally controlled, and I think that gives enormous power to the health consumer to manage their personally controlled electronic health record—something that will give the community confidence in the system, which I am sure we are all looking for.

Senator FIERRAVANTI-WELLS (New South Wales) (17:52): I understand that, under these amendments, the role of the system operator in providing de-identified data for research and public health purposes will be clarified, with the objective that the aggregate data be used to improve understanding of population health issues. Again in relation to privacy, when the system is accessed for the purposes of de-identifying data, will that also be covered by the legislation in terms of logging in and logging off? One accepts the logging-in and logging-off where it is a medical practitioner accessing the information. But, with this broader scope, do those provisions ensure that those privacy concerns are met even where the data is used in that manner?

Senator McLUCAS (Queensland—Parliamentary Secretary for Disabilities and Carers and Parliamentary Secretary to the Prime Minister) (17:53): The amendments specify that it is a function of the system operator to prepare and disclose de-identified data for research or public health purposes. The amendments also provide that the minister can make rules to specify requirements with which the system operator must comply when preparing and providing de-identified data. The system operator will be authorised to delegate this function to a Public Service employee of the Department of Health and Ageing, the Chief Executive of Medicare or any other person with the consent of the minister. Despite any delegation functions, the system operator will ultimately be responsible for this function.

It is intended that the rules will provide detailed requirements regarding the manner in which the system operator de-identifies data and discloses it to requesting parties. For example, it will be critical to set rules in respect of de-identifying the information of small populations to ensure persons are not directly or indirectly identifiable. It is likely that the requirements will draw on existing requirements developed by the National Health and Medical Research Council ethics committee or the Aboriginal Health and Medical Research Council. The rules may also provide criteria that the system operator must consider in determining whether or not to disclose the requested de-identified data.

Senator FIERRAVANTI-WELLS (New South Wales) (18:00): Yes, Minister, but they are not going to be able to register online for an electronic system. Is that not the case?

Senator McLUCAS (Queensland—Parliamentary Secretary for Disabilities and Carers and Parliamentary Secretary to the Prime Minister) (18:01): I am advised they can register on 1 July.

Senator FIERRAVANTI-WELLS (New South Wales) (18:01): But they are not going to be able to register online; they will still have to go back to the manual system. Is that not the case?

Senator McLUCAS (Queensland—Parliamentary Secretary for Disabilities and Carers and Parliamentary Secretary to the Prime Minister) (18:01): I am advised that from 1 July people will be able to register on the phone and in person at a Medicare office.

Question agreed to.

----- End Extract.

So there it is - a litany of concerns and worries - by no means addressed - but here we go!

With what we have discovered regarding the readiness of e-Medication and e-Pathology Standards and other applications I suspect this is all going to be a hollow shell for a couple of years at least. The launch - such as it will be - will be so soft it will resemble a ‘feather on the breath of God’.

I really don’t understand why the Parliamentarians have not tried harder to listen to the advice they have and to shape all this into something that might work. Maybe they want another ‘pink bats’ just before the next election?

I will leave it to the reader to identify the statements made here that might have been a trifle wide of the mark.

David.