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Wednesday, 29 February 2012
Page: 2255

Mr LAMING (Bowman) (10:34): The holy grail of an electronic health record is something that most developed economies are working towards. In summing up this side of the debate on the Personally Controlled Electronic Health Records Bill 2011 and cognate bill, I just want to make the observation that this nation will have an electronic health record. It is going to happen. There is a graveyard of good intentions in other developed economies, and they are lessons from which we can learn. The minister will be aware that there have been enormous expenditures in the UK and in the US. To go down exactly the same path and make the same mistakes—that is what makes this side of the chamber so determined to ask the right questions about electronic health records.

The contributions to this debate have been effectively divided in two. One is the significant upside of having a functional electronic health record, and there is no doubt about that. There is no doubt that we can see great savings and potential in the idea of having electronic information transmissible between the people who need to know. That is a no-brainer. And we know on the other side as well that there are significant concerns about privacy that have to be met. If I can distil it into a single sentence: we need to make sure that we move this project forward at the speed which current technology allows.

I do not want this to be something in between pink batts and the NBN, but we have genuine experience from around the world that shows that there is every possibility that that can occur. Today's debate really should be about how we prevent that occurring. How do we work carefully? How do we focus on the areas where gains can be made undoubtedly? And how do we acknowledge the areas where we are effectively doing little more than tipping money into some omnivorous money-eating machine that is a concept developed and controlled by public servants, from which politicians have effectively abrogated their responsibility, in the hands of fractured and separated private providers who accept contracts not knowing if they can deliver, at risk of forfeiting, at risk of going broke and at risk of not delivering? That is not made up. Those are direct quotes from what happened in the NHS. We can learn from that, but we do not if we have blind contributions in this chamber that focus on nothing but the upside of an electronic health record. Let me speak for a moment as a clinician and as someone who developed Australia's first mobile ophthalmic database for clinicians, called RedANT. I programmed it with Masoud Mahmood in Darwin in 1998. The intention was to have every electronic image of a retina taken in Indigenous Northern Territory available, on a small laptop, to any clinician who visits. By simply plugging in the laptop one uploads the most recent clinical information by matching a patient identifier that was generated temporarily and superimposing it using the common personal details. The concept was good. The idea was that a remote ophthalmologist or optometrist looking at an eye would not panic during an investigation, through not having the latest information available, and then send that Aboriginal Australian on a 700-kilometre bus or four-wheel-drive trip to see a doctor, only to be told, 'You're okay and you didn't need to come in.'

There are massive health savings that can be generated through reducing the false negatives, by giving a clinician the ability to look a patient in the eye and say, 'You'll be okay and you don't need to come back and see me for 12 months.' That is where the massive savings exist in the health system. The savings are not, as is commonly believed, in becoming 1½ per cent better at diagnosing cancer, because those people will re-present and re-present with symptoms and they will be picked up, often within days or weeks. The true costs in the health system are false negatives. The true saving is in a clinician having the ability to move to the top of their licence and make a call, 'You don't need any more resources spent on you for a period of time,' and be right. What we cannot afford is continual investigation of a person who is fundamentally healthy. The electronic health record offers us some aid in that area.

Let us not fool ourselves. Hummelstein, from Harvard; Wharton; and the Wall Street Journal have all shown that there actually is no evidence that this will save money. Conceptually we can see that it may, but in reality we have not yet proven that this electronic health record even improves the patient experience. We may be able to get rid of some paperwork, but there is no evidence that small providers will actually be able to recoup the cost of setting up an electronic health records system. Sure, Kaiser Permanente will have excellent stories about working in house on an electronic health record and how much that saves them, but we are dealing with an incredibly fractured and heterogeneous health system in developed economies like Australia.

We all know that the world is shifting towards using electronic transmission of data. We do it when we go to the shopping centre. We do it when we go virtually anywhere where we spend money. But health remains an area where we are incredibly cautious. At the same time, we have within the health system young providers—doctors, nurses, midwives, allied health workers—who know no other way except using an iPad. They cannot even navigate their way around a hospital without having access to electronic information from pathology and radiology. As I said when I began this address, it is going to happen. The only debate here is about how we sequence the work. Do we focus on the areas where we can really make a difference? There are 3.6 million Australians who have an enhanced primary care chronic disease record at the moment that is run through their local GP. We are the only nation in the world that has that knowledge. That is right. We have captured the 3½ million Australians who have the most to benefit by having electronic health record transmission and portability of that information. That is where we should be starting.

My grave concern is with the $72 million investment in wave 2 trials, because there is no guarantee that that money will feed into electronic health records. We are not learning lessons from overseas; we are actually just starting again with our own series of pilot trials. I have visited them. They are incredibly impressive but at $8 million to $12 million each, I want to know that having a few hundred people going through the Mater hospital program in Brisbane is actually going to lead to a more efficient information transmission system than we have currently. I need to know that that money invested is not a wasted cost but one that actually leads towards an electronic health record.

I know the minister will be just as concerned as I am that the clinical leads group that is meant to be providing the clinical oversight of this process has had its meeting delayed again, for another month. I hope that the minister will have good news to give it when it finally meets, because I tell you what: the great fear with Australia's electronic health record is that this will fall into the hands of unaccountable bureaucrats and that the clinicians and the politicians, who need to remain responsible, lose control the process. This is not a fairytale. This is the story of distressed NHS contractors—CSC, Fujitsu, Accenture; you name them—coming away after six years, after billions of pounds spent, unable to even provide an electronic health record to the southern half of the UK. This experience in the UK NHS is potentially the greatest IT disaster the world has known. I simply ask: what have we learned?

Today is not a debate about whether we think a health record is a great idea. It is probably worth ventilating the issues of privacy and some of the issues that will recruit clinicians to get involved, but this is about identifying how to sequence and stage the process. I do not see any evidence of that happening. I see groups working in a well-meaning way to develop a health record, uninformed by what has happened overseas, with no accountability back to this place, with minimal reporting and with little understanding of where we are going next—no idea of where we are going next. We just had to look at the Australian yesterday to see that, as long as you feed the machine, they will keep coming up with ways to spend the money. I want to see not the holy grail of a health record; I want to see the minister just step by step get this process moving forward.

We are a nation blessed with a massive Medicare database and massive PBS database. We are able to start having organisation and provider identifiers. That is not the hard part. But ultimately we need to ask the question: is it the be-all and end-all? Providers will only ever be able to put so much health information on an electronic record. For a long time, we will need something else. It is like comparing a technical manual to a novel; there will always be some information that is extremely difficult to capture on an electronic health record. So we may have to be doing more than one thing at the same time for a significant period until this health record is up to scratch.

We have another massive concern, which the EU is aware of, which is that data being collected even now cannot be effectively archived and will be time limited. Are we using the XML format that Sweden, for instance, have moved into to make sure that that archiving can guarantee that information collected today, last year or 10 years ago is still accessible next year and that we do not simply have an upgrade problem where we lose data?

I do not come here to give you a shopping list of concerns. I simply want reassurance that this government is not telling me it is all okay. We should learn a lesson from the US, where, in that 2008 Keynesian exuberance, effectively billions of US dollars were committed to encouraging GPs to develop an electronic health record and we had the Americans, of all people, saying: 'Slow this down. Let's learn from the UK. Let's see what is going wrong.' This is potentially a 10- to 15- to 20-year timetable. I would hate anyone to think this has to be a deliverable by 2014 because it is going to be way more complex than that. This contribution today would not mean much and would just be another 15 minutes wasted in the chamber if we did not have the grief and the disaster of what has been referred to in the UK as Labour's greatest IT blunder. This is not small bickies. This is a $15 billion budget, announced as early as 2004, which effectively gave us nothing but confusion. In fact, many—and I see the shadow spokesperson here, the member for Boothby—will say that it cost lives, that it caused heart attacks and that it actually did harm. Of course, I could never say an intervention will not cause some harm, but I do recall what is the prime belief in medicine—

Dr Southcott: First do no harm.

Mr LAMING: I hear someone saying it in Latin to me and it being translated across the table—primum non nocere. We should not do anything that hurts people. The best way to do that is to stage it, to sequence it and to focus on those that need it most, and not regard this as something that is going to happen overnight. We cannot afford to be investing in entities or providers who cannot deliver, and we have to have the strongest assurances that they can achieve it. The first signs that I see of slippage are when those contracts go from $1.5 million to $3.2 million or $48 million to $52½ million, when individuals who are contracted to do something suddenly end up doing something else, or in the worst-case scenario in the UK they start suing the government or politicians start writing to the secretary of the NHS saying 'I warn you not to sign that contract' nine months before it ends in tears. We just do not want to go there.

I do not want to be the professor of doom, but the minister in her first few weeks in this portfolio needs to take a very strong interest in what I warn could be the next NBN. This could be a government imposed, extraordinarily expensive solution that simply leaves us where the UK is. I am not saying that we are smarter than the UK. I would like to learn from the UK. I would like to know that some lessons have been learned from an economy that devoted an enormous amount of money to this proposition. If you leave it to providers to develop this and to do it in open-source code so that everyone can contribute to the improvement of the system, that might be fine, but where we head off into proprietary systems that are fundamentally secret, that no-one has access to and that we lose completely if the company goes bust has to be a concern. I have a fear that it could well happen here in Australia.

Ms Plibersek: It is okay to sit down earlier if you run out of stuff.

Mr LAMING: I welcome the minister's intervention, which is, 'Please, don't continue.' I know it can be uncomfortable to hear, but the great challenge is that many of the speeches that we have heard from your side of parliament could simply have been lifted out of the UK House of Commons, which saw Labour MPs speaking blindly and blithely about the importance of an electronic health record just months before the whole thing collapsed. That is the only warning I give you.

Speaking as a clinician, I would love to have it working. Speaking as a clinician, I do not see why there cannot be better access to item numbers through both Medicare and PBS for public providers who are looking after the health of Australians. There are lots of easy gains, there are lots of easy wins, but it is not going to happen if we have the continued delays that we have seen from this government. You should know, Minister, about the cancelled meeting for lead clinicians. You should know about that. What is happening and why can they not meet? What are they dealing with? The summing-up of this debate is your chance, early in your portfolio, to tell us exactly where things are at and exactly where the hiccups are. Who was given the wrong specifications? What was provided back to the department that in the end could not be used? Why are we delaying meetings with clinicians? This should be the first group you meet with, not the last. These are simple questions that I put to the minister. I emphasise that the support for the concept of an electronic health record is on both sides of the chamber, but I would love to see more concern about where the project is heading overall. It is large, it is complex and it is expensive and there is a graveyard of well-intended but ultimately misguided attempts to develop this record. It will take collaboration and it will take time. Start small, do it slowly and sequence it right and we may be able to go where other nations have failed.