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Tuesday, 19 June 2012
Page: 3656

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.