Here is the transcript of the Senate Community Affairs Committee Hearing. My comments in italics
May 30, 2012 - Approx.: [19:20]
CHAIR: We will move to questions on NeHTA.
Senator SINODINOS: Does NeHTA feel the fact that the legislation on the PCEHR has still not passed the Senate will impact on the rollout on 1 July?
Mr Fleming : You are asking for an opinion.
Ms Halton : Essentially the legislation is the cornerstone of the rollout. As the minister and I have been at pains to say publicly, 1 July is the beginning not the end point. We do not expect everyone to be registered on that date and we did not expect all the capability to be available on that date. Is it a terminal if the legislation does not pass? No, it is not. Essentially, would we like it to pass? Clearly, but we understand, as is always the case in these circumstances, we do not control the legislation priorities of the two chambers.
DGM Comment: There are only 2 sitting weeks left (8 sitting days) this year and then the Winter Recess runs for six weeks or so.
Here is the link to the Bill
http://www.aph.gov.au/Parliamentary_Business/Bills_Legislation/Bills_Search_Results/Result?bId=r4738
Senator SINODINOS: As of 1 July, will a GP be able to purchase the GP practice management software that will enable access to the PCEHR?
Mr Fleming : As we have discussed before, there are a number of vendor panels, one of them being the GP desktop panel. On there we have a number of GP desktop providers—in fact, I think they represent about 98 per cent of the market. We have been working with them, particularly in the wave sites, which you would be aware of. They have done their first release of wave sites which are to accommodate things like secure messaging, identifier systems and so on. They are currently working through the second release and testing that with us. There are a group of vendors who are aiming to be ready for July, moving over and above the GP desktop panel to companion tools that they also aim to have ready. They are in test mode, and once they are ready they have to go through a rollout process. That will take a little while, but we are working very strongly with those groups.
DGM Comment: Note no mention of PCEHR Connectivity.
Senator SINODINOS: Is this the initial software?
Mr Fleming : There are three panels. One is the GP desktop panel and vendors are working to reflect all the specifications in their packages. Once that is done, the panel will follow a national rollout.
Senator SINODINOS: What about updates to that software?
Mr Fleming : GPs generally receive updates on a regular basis. Each supplier has a different program, but the intention is that when they go through their cycle the software will be updated accordingly.
Senator SINODINOS: Is there a cost for those updates?
Mr Fleming : No, not for GPs. They generally have software on their systems—around 98 per cent of general practices are computerised. In that context, they have general maintenance agreements with software vendors, and updates would be covered under those.
Senator SINODINOS: How many practitioners do you expect will be trained to use the PCEHR as of 30 June 2012?
Mr Fleming : As Ms Halton indicated, we are expecting a slow rollout. The group we will be dealing with first are those in our wave site. Very specifically, in that context, we will be focussing on the wave 1 site.
DGM Comment: Essentially saying none as I read that answer.
Senator SINODINOS: Do you have two sites, wave 1 and wave 2?
Ms Huxtable : Yes, but there are 12 sites all together. There are three wave 1 sites and nine wave 2 sites.
Mr Fleming : As part of the process we are going through with them, come 1 July, when the national infrastructure is available, they will start a process of migrating across to that.
Senator SINODINOS: The take-up will essentially be a demand driven process?
Mr Fleming : Yes, through the wave sites we have a close relationship, so we will be looking to implement as quickly as possible.
Senator SINODINOS: What sort of coverage do you have across the wave sites?
Mr Fleming : There are three wave sites. They cover East Melbourne, the Hunter and the Brisbane area. From memory, the total population catchment of that group is about 1.6 million people, but I will have to check that. That is the total population catchment and clearly we have targets with those groups for the number of practitioners and the number of consumers that will be added.
Senator SINODINOS: Are these internal working targets or have they been publicly announced?
Mr Fleming : They are internal working targets we have with each of the wave sites.
Senator SINODINOS: If you are a consumer in one of these areas and you log on to this on 1 July, what functions will you be able to access?
Mr Fleming : The discussion around functionality is probably more for DoHA.
Ms Huxtable : The 1 July commitment is around the capacity of consumers to register for a PCEHR. The expectation is that from 1 July a consumer can register. That can be done either through a Medicare shopfront or a Medicare call centre. There will also be an online registration capacity which may not be available from 1 July but will be available very soon thereafter. Once a consumer is registered they would be able to go in through the consumer portal and put their own information in to their record. There is a consumer entered notes area of the record. There is also a capacity for them to put in information in regard to their allergies or adverse reactions, things like complementary medicines and other information they can put in to their record.
The capacity for the record to grow to include the upload of clinical information from a GP relates to other functions that will come on stream thereafter—it is an evolutionary rollout. The first of those relates to provider registration and the capacity of providers to upload records. Mr Fleming spoke about the work that has been occurring in the wave sites in terms of getting software upgrades, so the upload of clinical records can occur. The capacity for that to happen more broadly—so, outside the wave sites—we are looking at around September. That will be the point when that broader GP software rollout will occur, or that is the current plan in that regard. Then you will begin to see a record that is populated with shared health summaries, event summaries and the like. Over time, additional functionality will be added around medication management, for example. It is an evolutionary process.
DGM Comment: So no on-line registration till September at the earliest - not was being expected even 3 months ago
Senator SINODINOS: Are we relying on consumers coming forward to be part of this? How are you galvanising people to be part of it?
Ms Huxtable : The work in the wave sites is very much around working with general practitioners and the Medicare locals within the general practice areas, and through those means working with consumers. The wave 1 sites in particular very much have a primary care focus. In the wave 2 sites a number of different stakeholders and interests are involved. For example, at the Cradle Coast site in Tasmania they are working on advanced care directives across the Medicare local, the hospital and residential age-care facilities to develop advanced care directives and store those things. Different sectors are involved.
The point of working though those wave sites is to generate a community-of-interest approach and better understand the best way to get people engaged and interested in their records. We have also been working more broadly around change and adoption activity. We have a change and adoption partner, so there is an online learning centre and the like. There has also been quite lot of activity at conferences talking about the record. The wave sites are where the real push is, and quite a large population is involved in the wave sites. If you count wave 2 as well as wave 1, about three million people are potentially covered.
DGM Comment: But of course most of those people are only covered by some non-integrated subset of the planned PCEHR.
Senator SINODINOS: Are doctors being equipped to have the right sort of conversation with their patients to help sensitise them to this? How do you get the doctors to say the right things?
Mr Fleming : Sitting beside me is Dr Chris Mitchell who has been driving change management within the NeHTA environment and working closely with our change and adoption partner. Chris is the immediate past president of the RACGP and has been working with the various peak bodies to drive that.
Dr Mitchell : I am a rural GP in northern New South Wales. I lead change and adoption at NeHTA and work with the national change and adoption partner. You asked how to encourage particularly GPs to support the record. It comes down to a value decision. As a rural GP I have seen many of my patients fall through gaps in the healthcare system. We are promoting a system that will create a more connected health system. That is the sort of thing that general practitioners who have been in the business for a while find quite attractive. The predominant way we are driving that is making sure we have resources available for them. Those resources are being delivered online so that they are available anywhere in Australia. The Department of Health and Ageing is discussing some on-the-ground support that was announced in the recent budget. This support will also make a difference for general practice to be engaged in this process.
Senator SINODINOS: If I register as a consumer and I have a family doctor, to make sure this is ultimately a comprehensive health record, don't you need to link up with hospitals all over the place, those where I have lived before, to get my whole clinical history?
Dr Mitchell : Your point is well made. There are two elements of the strategy and the first is we are identifying priority groups, particularly older Australians, people with chronic and complex health conditions, and Aboriginal and Torres Strait Islander people. We are identifying a number of priority groups and working directly with those groups to drive interest. We have talked about the approach at the e-health sites, which is very important. Those e-health sites are providing a connected system, because we have been spending time in that area. We are also working directly with health communities and there are a lot of health communities that we can lever very effectively already. Management of chronic disease, such as diabetes, is a case in point where a lot of work has been done. Private health insurers is another area where a lot of work has been done. There is quite a detailed strategy around this to try and make sure we can lever adoption as effectively as we can.
DGM Comment: So all this is years off!
Senator SINODINOS: Are the private health insurers involved?
Dr Mitchell : There has been a lot of consultation with private health insurers.
Ms Huxtable : Medibank Private is one of the wave 2 sites we have been working with.
Ms Halton : Can we be clear that when it comes to linking up people's historical information, particularly on a state basis, it will depend a little on the timetable in particular states. If you take the ACT, the ACT government has been going through a process of linking all its hospital records to make sure it has identified historical personal records and has them connected. I have a personal story where I ended up in emergency having been knocked off my bike, and the hospital was able to access my record, which included a period when I was 14 years old. The ACT has connected records to make sure the history is available. It will take time for each of the jurisdictions to do this, but once they have done it and their patient systems are enabled to connect to the record, they will be able to find that history. But that will take time; it will not happen overnight. In a small jurisdiction like the ACT, that work is well underway.
Ms Huxtable : We have worked very closely with the states on e-health for many years, as you would aware, through the national health strategy and beyond that. In more recent years, through NeHTA, work has been done with the states and territories around assessing what jurisdictions need to do to get their systems up to speed to connect to the PCEHR. That is a live discussion and NeHTA has been working with the states in that regard.
DGM Comment: Again Ms Huxtable wittering on about the National E-Health Strategy that did not mention the PCEHR.
Senator SINODINOS: One of the urban myths that has arisen about NeHTA is how much money we have spent to try and get this system up. What is the total spending by NeHTA on the PCEHR?
Mr Fleming : NeHTA has two sources of funding. We are run by the Council of Australian Governments and we are funded through COAG for a series of projects, which includes things like the identifiers, secure messaging et cetera. The Commonwealth, through COAG, has a fairly major stake in that environment. The second source of funding is directly through the Commonwealth for the PCEHR. We are managing agent for the Commonwealth on that front. NeHTA receives a portion of the $467 million, which has been discussed, for the PCEHR from the Commonwealth and there is COAG money as well. Our Chief Financial Officer can break down the COAG components to give you total COAG and total Commonwealth funding for PCEHR—and address that urban myth.
Mr Hale : The PCEHR is a Commonwealth program and NeHTA entered into a managing agent contract with the Commonwealth to perform certain functions on the program. That contract was executed at $110 million for a series of actions we needed to undertake to establish the PCEHR. In regard to the COAG work program, we are coming to the end of the current three-year funding period which started in 2009. NeHTA was awarded $218 million for that period. We have not exceeded that level of spending. There are various elements to the way we account and budget, where certain funding comes in in each year. However, some of those funds are committed for future expense and therefore carried from one year to the next. That would be the indication in our budgets where figures are a little higher than the funding provided.
Senator SINODINOS: Does this funding include a number of forward years or is it funding to date?
Mr Hale : This is funding to date. The $218 million was for the period from July 2009 to—
Mr Hale : And that is shared?
Ms Huxtable : The $218 million is 50-50 and the $466.7 million is the PCEHR Commonwealth-only money which is for two years, 2010-12.
Senator SINODINOS: Does that include spending on the pilot sites?
Ms Huxtable : Around $75 million of the $466.7 million was for the wave site development. Since then we have put more money into some of the transitions, so that they can transition to the national infrastructure: I do not have that number in my head. There was also money in that for the actual build of the national infrastructure. Accenture has been working on the national infrastructure for benefits and evaluation and for the change and adoption. I think the $110 million and the $466.7 million overlap a bit, so we will have to take on notice exactly how that is broken down. As Chris said, we engaged NeHTA as our managing agent in respect of a number of these elements and then there are elements where we have a tripartite contract between NeHTA, our department and the national infrastructure partner. We have some joint responsibilities in that regard.
Mr Fleming : Specifically the $110 million is a subset of the $466.7 million.
Ms Huxtable : It is not an additional amount, so it wrapped into the $466.7 million. But on top of that we are making direct payments in respect of some other functions.
Senator SINODINOS: What do the pilot sites cost on average?
Ms Huxtable : They vary. I do not think it makes sense to talk of an average.
Senator SINODINOS: What is the range?
Ms Huxtable : I do not have that in my head. The wave 1 sites came online much earlier and were very focussed around primary care regions based around Medicare locals that already had a high level of readiness and capability to go to the next stage. The first sites were hand-picked. For the wave 2 sites there was an open process, so we got a very large number of submissions from a range of stakeholders and that resulted in those nine sites. We can take on notice exactly what the funding has been for the sites, but it ranges. You can get a sense from the fact there were 12 sites and the initial allocation was $75 million, so that gives an average.
DGM Comment: They really do seem not to want to clarify just what has cost what. Think that $110 million - $55 million per annum at $200,000 per person is a good 250 people working to deliver standard and supervise wave sites. That is 20 or so people per site - overdone a bit one might say given the sites are funded separately!
Senator SINODINOS: What was the business case for this? What benefits did you identify? I notice there has been reference to productivity benefits, a reduction in adverse events et cetera. Have these been quantified? The minister quoted a gain of $11.5 billion over 15 years, I think.
Ms Huxtable : That is correct. I talked about the work we have done with the states. Part of that work was developing a business case around shared electronic health records. As part of that Deloitte worked on the benefits, and that is the figure the minister referred to. It came out of the 2010 business case that led to some of the decision-making about investing in the record. In the last week or so we have put on our website some more information around the Deloitte figure. We can table that, if you wish. That includes public, private and community benefits offset by various costs in those areas. The main benefit contributions are around quantifying reductions in avoidable hospital admissions and GP visits due to more effective medication management and improvements in continuity of care though timely information and shared health summaries. Those are the two headline benefits. As I said, we can table that document, if you wish.
DGM Comment: You can see the document here:
It takes nonsense and fudge to a new art-form in my view.
Senator SINODINOS: Please table that document as it would be good to see the cost-benefit. A question raised with me by people in the industry is around legal liability for the hardware and the software if you are the GP purchasing it. What liability to their patients do you have for the software operating properly?
Mr Fleming : We have been working through this process very closely with the medical community for some time, including the medical indemnity insurers, as you would expect. Chris is closer to that component than I am, so I hand over to Dr Mitchell.
Dr Mitchell : Could you just repeat the question so I can make sure I understand exactly what you are asking.
Senator SINODINOS: Yes, it was about the role of the GPs in the system and what legal liability they have, based on the hardware and the software.
Dr Mitchell : Medicolegal concerns can, obviously, potentially affect adoption rates and, particularly, GPs' enthusiasm for being engaged. So one of the bodies of work that we did quite early was to work with the Australian Medical Association on some guidelines about what might be appropriate use of the personally controlled electronic health record. We did that with an intent to minimise risk and to set some peer standards around the use of the product. Now, those guidelines are currently in draft form and they are still being widely consulted on through the profession. The intent, when they are finalised, would be for other organisations to give those consideration and for the professional associations to give advice to their members to provide a better understanding. We believe that that information is probably best if it in fact comes from people's professional organisations, so we are working to support that.
DGM Translation: They have not got any agreement yet.
The other issue is the terms and conditions for the use of the personally controlled electronic health record, which are also matters that are currently under negotiation, and there is ongoing work to make sure that those terms and conditions are going to meet the needs of the system operator and users, and in fact the providers involved in the system as well.
Senator SINODINOS: Are there any ongoing costs for doctors that the government is funding in this process—ongoing costs in terms of the operation of this system in their practices?
Ms Granger : Their practices currently receive practice incentive payments to help them support appropriate technology. Many practices receive those payments to help them support the equipment involved.
Senator SINODINOS: And those payments are ongoing?
Ms Granger : Yes, and they have certain criteria which we are currently negotiating with professional associations and others to ensure that they can connect to the PCEHR.
Ms Huxtable : I am not sure if Ms Granger mentioned this, but these are practice incentive payments.
Senator SINODINOS: Yes.
Ms Huxtable : So you would be aware that from time to time we look at what practice incentive payments are being used for, to ensure that they are up to date, I guess. So in the e-health space, given the introduction of the PCEHR, we have been looking at what is the most appropriate suite of expectations you would have of practices in respect of e-health. We have been working with the PIP Advisory Group—someone else is actually responsible for this so they can come and hit me if I get it wrong!—on constructing the most appropriate suite of measures around PIPs. I think we have also had some engagement with the profession around where MBS items are appropriately used, where the taking and recording of clinical notes is a legitimate part of a consultation, and so that function can be part of a complex healthcare consultation, for example, and attract the appropriate MBS item.
The other point of support is through Medicare Locals. There was a recent announcement about money being provided through the Medicare Local network to provide support to practices—for example, around how to do data cleansing and how to incorporate individual healthcare identifiers into their practice management systems and the like, using the network of their health support officers.
Senator SINODINOS: Okay. Are you going to need all providers of general practice, aged care and pharmacy systems to be signed up to be able to use the health identifiers and interface with the electronic health records?
Mr Fleming : It would be a gradual process. We mentioned the GP desktop providers; there is a panel, and they have been working with us for quite some time now. You might also be aware that there is an aged-care panel established. So it is very similar to the GP environment, where we are now working with the aged-care industry for them to change their systems to reflect this. Same as with the GP desktop vendors, that includes identifiers, going all the way to being able to communicate and work with the electronic health record.
We have also issued an expression of interest for community pharmacies, so we are now going through the same process with the pharmacy environment. The intention is that, by the time that is completed, we will have done GP desktops, aged care and community pharmacies.
In addition, we are currently working with the jurisdictions, through our NEHTA relationship obviously, and the providers of hospital systems software to look at what can be done at that end. Over and above that, the work we have been doing with the wave sites does mean a number of the jurisdictions are capable, as part of the process, of sending us discharge messages that would flow into the electronic health record.
DGM Comment: Again reducing expectations of what will happen when.
Senator SINODINOS: Okay. The money that is in the budget for take-up assumes we get coverage of 29 per cent of the population by the end of the forward estimates; is that right?
Ms Huxtable : I am not sure where that has come from, Senator. There has been a two-year additional investment in the PCEHR, through to 2013-14. My recollection is that the expectation is around two million consumers at the end of the first two years. I am not sure that that translates to that figure that you had.
Senator SINODINOS: No, I was struggling with it in my head as well. It is in a footnote on page 192 of the portfolio budget statement regarding the PCEHR and reads:
This program has funding for only 2 years and 2014-16 targets are subject to funding being carried forward at current levels.
Ms Huxtable : That would explain it. What is in my head is the end of the first two years.
Senator SINODINOS: Yes. Does that mean you would need another $233 million to cover 2014-16?
Ms Huxtable : I think the $233 million has two elements: one is the Commonwealth's funding for NEHTA, which from memory is around $67 million, and the other is the continuation of the PCEHR. What has been agreed at the health ministers level is that there needs to be more work done around the business case for long-term funding and governance of e-health, so there is an e-health working group that will work across the states and territories to develop that in time for consideration for the 2014-16 funding cycle, basically.
Senator SINODINOS: Yes. I will tell you where this 29.6 per cent came from. At the end of the 2015-16 financial year, there would be 6.8 million registered for a PCEHR, which is about 29.6 per cent of the Australian population.
Ms Huxtable : What page are you on, sorry? It was a footnote on page something?
Senator SINODINOS: I think it was on page 192.
Ms Huxtable : No, it is not page 192. That is a different outcome.
Senator SINODINOS: Anyway, this is an inference that it is 29.6 per cent of the population. So you need $233 million potentially every two years to cover that proportion of the population going forward?
Ms Halton : Sorry, can you just repeat the number again, which year?
Senator SINODINOS: That number was $233.7 million.
Ms Huxtable : Yes, and that has a NEHTA component—a Commonwealth contribution to NEHTA—and a PCEHR component.
Senator SINODINOS: Yes.
Ms Halton : If you go to page 192 of our PBS, for 2015-16 it has 2.6 million as our target on registration. It is on page 192 on the left-hand side, the bottom right-hand number.
Senator SINODINOS: Yes, the 2.6 million. I guess the issue is, if we need to ramp this up in terms of coverage, going forward it is a fair whack of money—is that right?
Ms Huxtable : Sorry, can you repeat that?
Senator SINODINOS: If we are at 2.6 million by the end of, say, 2015-16, how do we get to reasonable coverage of the population as a whole?
Ms Halton : No, no. Let us be clear. The money that we have got in the FEs includes some money which is the end of the development process, and there is a different amount which is operation. I do not know how you are running the ruler over the numbers, but you have to distinguish between development costs, which are in the two years worth of FEs, and \ operational costs. So with the operational costs you cannot say 'therefore it's a multiple'—does that make sense?
Senator SINODINOS: I get your point. But what I am getting at is that, if we are thinking, 'We are going to ramp the system up if it is successful and gets reasonable coverage of the Australian population,' what are the fiscal implications of that on an operating cost basis?
Ms Huxtable : Are you assuming that as participation grows, costs will grow?
Senator SINODINOS: Yes.
Ms Huxtable : I do not think that is a fair assumption at all.
Senator SINODINOS: What is the variable cost that we add to the system?
Ms Halton : It is not a linear function. The two things you have in the costs are the balance of the development cost together with some operating costs. You cannot assume the operating costs are linear—because they are not. In fact, my colleague here just wrote me a cryptic note that says, 'infrastructure synergy'.
Mr Fleming : There is an infrastructure synergy. You have to build the infrastructure and then, once you have it, it does not matter to a certain extent—
Senator SINODINOS: So the variable cost of adding to the—
Ms Halton : I love a tech-head. But he is right.
Senator SINODINOS: I am trying to get a feel for what the variable cost is as you add new people to the system.
Ms Halton : There are a small number of unknowns here, including the change in adoption costs going forward—how much, if any? There will be a certain level of natural momentum around this once it gets moving and consumer demand will drive adoption. The real question, then, is the operating cost, which is only a proportion of this number. We can disaggregate that. But you cannot assume it is linear. On the contrary, I do not expect it to be linear. There will be scale savings.
Senator SINODINOS: Of the money we have in the forward estimates, how much is for development or fixed costs as opposed to being for a variable component based on take-up rate?
Ms Huxtable : Someone else can give that answer.
Senator SINODINOS: Just an order of magnitude?
Ms Halton : In reality, I think we are still negotiating with the national construction partner in regard to some of that, so we would probably not want to say too much about that anyway.
DGM Comment: This tells you the development work is not done and Accenture is going to need more funds I suspect. The rest feels like obfuscation to me as it registration costs per individual won’t fall and there is still development work and then a thing called maintenance!
Ms Granger : I probably cannot give you an order of magnitude, but I would say that the technology is being built so that it can take a much larger scale of population than we expect in the early years.
Senator SINODINOS: You would assume so.
Ms Granger : That is the case.
Senator SINODINOS: Senator Boyce has previously expressed interest in safety studies and the record on safety testing. I note here that a document called Clinical safety case report was posted on the website last Friday, just in time for estimates—
Ms Huxtable : Now, now, Senator. That is very cynical of you.
DGM Comment: Hardly.
Senator SINODINOS: which I think Senator Boyce will appreciate. Has this been vetted by the government before it has been put on the website? Did it go through the minister's office or is it just a straight working document?
Mr Fleming : I will describe the process we follow. We have a group of 60 clinical leads who represent various areas of the clinical community. They get involved from the very early stages. In fact, we had a group of clinical leads involved in the original strategies, business cases and concept of operations through to the detailed design and then system testing. All the way through we have clinicians involved in this process and every step of the way there are required sign-offs. The document that was published is a summary of that process—as you would expect, there are numerous documents attached to this—and was ultimately signed off by the head of our clinical leads group, Dr Mukesh Haikerwal.
Senator SINODINOS: In this context, what does safety actually mean? What obligations do you carry in signing off on a document like that?
Mr Fleming : I will pass over to Dr Mitchell in a minute to give a clinical perspective on that. The work we do is about safety and the efficacy of the system—whether it is fit for purpose et cetera. It flows all the way through to how it would work in production, what the process flows are, what the implications are for the commission using it et cetera. It covers all those aspects; it must be fit for purpose.
Ms Halton : Just before Dr Mitchell weighs in, I will make one comment from a safety and quality perspective. Apart from noting that the safety and quality commission are working very closely with NeHTA on this, as they should, the thing I would say from a safety perspective about this kind of work is that it, in a way, provides a better opportunity to systematise some aspects of safety than occurs in the current world. In the current world, it is a one on one arrangement, which depends on the application, the interest, the diligence—whatever you want to describe it as—of the particular clinician and the clinician's local IT, staff and all the rest of it. It is a bit like the airline industry—you have a capability to systematise safety in this world in a way that you do not in the current world. Having said that, the clinical community have rightly said, 'Yes, and if you get it wrong, it could be pretty nasty,' and that is very true. So you have to make sure you have systems to test and make sure that the safety side of it is robust. But I do think there is an upside on safety from this technology. But Dr Mitchell will be far more persuasive than I have been.
Dr Mitchell : That is exactly the point. Clinical safety, at all levels of health care, is always a journey. The system we have at the moment is fundamentally fragmented. What we are trying to create is a better connected system so that communication can take place between providers of care. The information in the personally controlled electronic health record is going to be fundamentally dependent on the quality of data which is held in the solutions the clinicians are using. It has been my personal experience, in this journey, that being involved in that process makes dramatic improvements to the data quality in my practice. For example, our practice is involved in a program called the eCollaboratives, which is a clinical process of improving data quality in general practice in preparation for sharing that information. Just the simple process of actually printing out my records and giving them to my patient at the end of the consultation makes a dramatic difference to the quality of my notes and my records. I think you will see those same changes going through a whole lot of different levels of the health system as we increase the transparency of the information. This is happening at the moment, but it is hidden.
What we are trying to create is a more transparent and connected system. There are a number of tools. For example, in my practice there is a clinical data self-assessment tool we can run. I believe my practice is a good practice and we have put a lot of effort into the quality of care we are able to deliver. One of the items we have run through the tool is, for example, the medications that are currently in my clinical record but which have not been printed out for the last six months. While not every one of those medicines is incorrect, some of them are medications that should have been ceased. The increased transparency allows me to improve the quality of my medical records. Not only will that affect the personally controlled electronic health record but, every time I write a referral to the hospital and every time I write a referral to one of my specialist colleagues, I will be levering those benefits. The point you are making in terms of clinical safety is very well made. I think we all need to be very careful about this. But we also need to respect that the systems we have are not perfect and that what we are trying to build is better than what we have at the moment.
Senator SINODINOS: As you say, you are on a journey. When it comes to issues of safety around the health system, however, at the end of the day, if something goes wrong, consumers will want someone to blame. In my experience, they end up blaming governments. They say, 'This system is ultimately being run by the government'—or Medicare or whatever. What I am asking is: from our point of view, who takes the rap on safety in this particular case? Is NeHTA signing off on the safety of the system in this way? Who takes the responsibility within the government system?
Mr Fleming : NeHTA takes responsibility for all of the steps. Where we have produced that PCEHR Release 1a sign-off, we have a number of clinicians involved in that and we have sign-off all the way through. We then work with the department very closely—and the chief medical officer is involved in that—in looking at what happens on an ongoing basis in the operational context. So it is being worked through. The other point which is worthwhile noting, given that you talked about the consumer, is that this is very much about consumer empowerment. As part of this process, the consumer will have a lot more information than they have ever had in the past. That in itself is a safety mechanism which did not exist before.
DGM Comment: NEHTA will want to get out of this frame as the errors mount as they will in a system that has not really been piloted and tested in ways that might have been prudent.
Ms Halton : I can give you a personal example of the point Dr Mitchell just made about the safety aspects of what is in somebody's record. I accompanied a senior family member around a range of hospital visits in the not too distant past. The senior family member got a list of medications the senior family member was allegedly on. The senior family member, not surprisingly given the genetic connection, anally went through the list and said, 'But I am not on that, that or that.' As he went to his next range of appointments, each time he had to hand over this list and say, 'I am not on that, that and that.' What this enables you to do is have a much more direct dialogue with a clinician on a regular basis. In fact, if you took up Dr Mitchell's point, instead of, on every consultation, having to hand over something, you would have had that discussion long since and would no longer have to explain to X clinicians and acute care facilities, 'I am not on that, that and that but actually I am on this other thing which has not made it onto the list'—because the other thing would have been there as part of the record; it would have been much more complete. There are a series of elements to this equation. There is the personal element—both the clinician and the patient—and then there are the systems that connect all those bits of information together. So, from a quality and safety perspective, firstly you get greater patient engagement earlier in this arrangement, and secondly the clinician is able to review that information and will structure it with the patient. Then, yes, there are systems things that have to work from a technical perspective to make sure they do not get things wrong, but certainly from our view those things are (1) more evident and (2) more transparent. That does not mean nothing will go wrong. Sometimes things do go wrong, but they do now.
Senator SINODINOS: Just to round off on this, with some of those priority groups you talked about before that you are particularly focused on, this is where the issue of consumer empowerment comes in, because a lot of them are not necessarily very well informed, particularly in a digital sort of environment. So how do you test their needs and compensate, perhaps, for their lack of digital sophistication or whatever you want to call it, or IT sophistication, or even their access to some of these tools?
Mr Fleming : I will start by answering. I mentioned before that we have a group of clinical leads. We also work very closely with the Consumers Health Forum, which does a very similar job in many respects. The Consumers Health Forum is a peak body for many, many consumer groups. So we work closely with it and the department, and it works through and help that dialogue and the representation. So our change management teams then work very specifically with a number of the key groups in chronic disease et cetera to help drive that through. It is very similar to the clinical process. We have a process that we follow with our consumer groups.
DGM Comment: Did not answer the question.
Senator SINODINOS: Okay. Thanks.
Senator DI NATALE: I think Senator Sinodinos has already asked a few of my questions, so I will follow on from the questions around safety. If you are an individual and you have a concern, just talk me through what happens. Who do you contact? Just looking at it from the consumer level, what do you do? What is the process?
Ms Granger : You contact the systems operator, which will be—
Ms Halton : It depends on what the concern is.
Ms Granger : Yes, that is true, but I think the first point of call is through the Medicare DHS call centres and inquiry lines.
Ms Halton : Hang on a second. We need to be clear about what kind of problem. Say you have been to Dr Mitchell's practice, he has handed you something on the way out and you have said, 'Whatever—I'm rushing off to my next appointment.' You have got home that night, slapped it on the table, had your cup of tea at the end of dinner and then read it and said, 'Well, that's wrong: he's put a medication on here I don't think I'm on,' or, 'There's one on here missing.' The first thing you do is ring him. So it depends on the nature of the problem. If it is a problem—
Senator DI NATALE: That is, I think, fairly clear, but I am talking about a specific problem with your record.
Ms Halton : That is the point. If there is a problem with your record, it depends on which part of the record there is a problem with. If it is a part of the record that has come from your consultation with Dr Mitchell, you go back to him. If it is a problem with a part of the record that you have added yourself, you will have a capability to change it because it is yours. So it really depends on which part. We have to make sure people are aware of where to go. If it is a systems operation problem, then exactly—you will come to the system operator. We do need to make it clear to people, depending on what the authorship of the issue or problem is, where you go.
Senator DI NATALE: Fair enough. Let us assume it is a system operator issue. What do you do? Literally there is a hotline at the systems operator level?
Ms Granger : That has opened already—a 1-800 number.
Senator DI NATALE: You talk through your complaint?
Ms Granger : Yes, and it depends on what the nature of your inquiry and complaint is. If it is a simple one, they will handle it there. Otherwise it can be referred to the Privacy Commissioner if it is that kind of issue. If it is an issue with an individual provider, we may suggest that you go back to them.
DGM Comment: So the Privacy Commissioner is to handle complaints about wrong information being in a record to privacy breaches etc. Might get pretty busy as adoption rises - if it actually does.
Senator DI NATALE: Is there an appeals process if you are not happy with the way it has been resolved?
Ms Granger : Yes, in the same way as any other government process. There are AAT processes and so on in place—Administrative Appeals Tribunal and so on.
Senator DI NATALE: Good. I have a few questions around the advisory council. Can you just tell me a little bit about the role of the advisory council.
Ms Granger : It is there to advise the systems operator and is appointed by the minister and in the proposed legislation. It is fundamentally to advise on consumer and clinician experience in the healthcare system. It has about seven to eight members across some specific criteria.
Senator DI NATALE: How much info can they get from the system operator? Can they get audits, consultant reports et cetera? Are they able to access that level of information?
Ms Granger : They are able to ask for research to be done, but it is hard to tell the nature of that in advance.
Senator DI NATALE: Okay. One of the issues, I suppose, is this question of consent. One of the things that have been raised with us is the issue of the system changing over time. Obviously, as we said, it is an evolution, a work in progress and so on. How do you resolve that issue that you are consenting to something that may change over time? What is the process for dealing with that? Do you understand the question?
Mr Fleming : Absolutely.
Senator DI NATALE: You do not want to consent to an appendectomy and end up finding out you are getting your tonsils out.
Ms Forman : In relation to consent, the consent that a consumer is required to provide is basically consent for healthcare providers to upload their information. They can at any point ask for a particular item not to be uploaded, so they can withdraw that consent along the way. But that is really the main consent that they provide, and we would not expect that general sort of consent to change depending on the functionality that is in the record. People would be made aware of new functionality through the various information channels on the record, and they would be free to reconsider their participation at any point if they wanted to.
Senator DI NATALE: But doesn't the consent also relate to the design of the system? You are consenting to a particular system. If things change significantly over time, do you have legal advice on how you deal with that? Is that something you have considered in detail? Informed consent is a pretty tricky area, isn't it? Is that something you have considered?
Ms Forman : Yes, we have. We believe that the way the consumer consent is being sought is a legal process and does allow for informed consent.
Senator DI NATALE: I suppose I just worry. Could you get to a point where somebody says, 'Well, I don't want that particular change, and that's not what I consented to when I first consented?' Could they hold things up?
Ms Huxtable : You could unconsent.
Ms Forman : Yes, you could opt out
Ms Halton : You can withdraw at any time.
Ms Huxtable : Or whatever the relevant word is—deconsent.
Senator DI NATALE: Is there the capacity for people to consent to a system as it was and then not necessarily participate in a particular change?
Ms Huxtable : I am struggling a bit to imagine the scenario here, because what they are consenting to is a mechanism through which electronic health information is shared. In the first instance that electronic health information may be information provided predominantly through general practice, and over time it could include medication information, pathology and diagnostic imaging. But it is all in the suite of sharing of health information. Right at the beginning, they can either choose to enable any provider involved in their care to receive or view their information or choose to have a provider access code so they can give some providers access or not. That can happen at the beginning. It can happen at any time. They can choose to have a more stringent or more narrow range of providers involved in their care, but I do not think the fundamental design would change. It is just a matter of how much is encapsulated by that design.
Ms Halton : The reality is that you can change at any point who you enable to access what. In a way, I guess the way to think about this is which part of the picture you are going to let anyone else look at, not, 'Can I fundamentally redesign the picture?' It is simply, 'Which part will I enable who to see?'
Senator DI NATALE: I suspect there are people who are just a little nervous about it; that is all.
Ms Halton : As we all understand. That is why I made the point earlier that this is not going to be 22 million people registered on day one. We do not want that.
Senator DI NATALE: Sure. Just remind me: what is going to be the functionality on day one? I know we have discussed this before, but it might be worth just doing so specifically?
Ms Huxtable : From day one, the focus is very much on consumer registration, so it will be the capacity of consumers to ring through the Medicare call centre or attend a shopfront and register for the record. There will be an online registration function which we are pushing very hard to have available from 1 July, but it may come some weeks after that. Basically, once a consumer has registered they then will be able to go in through a consumer portal and put information into their record. That can include information about allergies or reactions and information about complementary medicines. There will be an area of the record where they can provide consumer-entered notes so they can keep their own notes on health events. That is the first tranche of functionality.
DGM Comment: So we are basically getting a basic user entered Personal Health Record on July 1, 2012 that you will be able to ring up and register for. And that sounds like it until September at the earliest.
The next tranche of functionality is around provider registration and the capacity of providers to upload clinical information. That will follow within a few months of 1 July. We talked before in Melbourne about the GP software specification issues and how that becomes ubiquitous.
Senator DI NATALE: Yes, which is down the track.
Ms Huxtable : That will be more like September.
Senator DI NATALE: We also discussed immunisation history, where a prescriber or—
Ms Huxtable : Yes. MBS, PBS, immunisation and organ donor registry information.
Senator DI NATALE: So those four things will still be on track?
Ms Huxtable : They are on track, but they were not 1 July releases; those are within the next few months after 1 July. That is the next tranche of information that becomes available.
Senator DI NATALE: I had understood those to be on 1 July. No?
Ms Huxtable : No.
Senator DI NATALE: So if you are a GP, in a couple of months you will be able to sit down and access those four things: immunisation history, MBS, PBS and organ donation information, is that right?
Ms Huxtable : The consumer will be able to view those things in their record. The provider could go in through a provider portal to view the record and that information would be available. The provider could also upload event summaries or shared health summaries in respect of a patient to record that point.
Senator DI NATALE: Thank you.
[20:21]
Here is the link.
All I can say is that a vast sum of public money seems to have been spent for not a great deal. Certainly we now know for sure any real benefit flow from this system is not going to be seen any time soon!
For the dollars we really have not got much at all as citizens so far - despite the hype and bluster from DoHA.
For the dollars we really have not got much at all as citizens so far - despite the hype and bluster from DoHA.
David.
