Friday, March 02, 2012

Hansard Of Debate On PCEHR Bills. Only Some Seem To Get The Complexity or the Details. Part 2.

Minister Plibersek’s (at the end) contribution and the one before it are well worth reading for background.
Wednesday, 29 February 2012
Second Reading Speeches
Mrs MOYLAN (Pearce) (09:22): As I outlined last night, there have been concerns expressed about the national eHealth transition policy by the National eHealth Transition Authority, and those concerns give rise to the capacity of the government to finalise the design and to deliver the electronic health records without—and I quote here from the National eHealth Transition Authority—'potential clinical risks'. That being said, notwithstanding some of the difficulties, the intent of the Personally Controlled Electronic Health Records Bill 2011 and related bill is sound because, as I was saying last night, in an increasingly mobile world one of the most frustrating experiences for patients across Australia is having to continually recite their medical history to each doctor, specialist and allied health professional that they come into contact with. The process is necessary at the moment as it is an unfortunate reality that an individual's medical record often gets lost, is not updated or critical information is not effectively passed between an individual's treating professionals.
In an increasingly mobile society people often overlook the need to transfer records from their previous medical practitioners. The process is equally frustrating to the medical community and, more importantly, treating professionals are acutely aware that not having a comprehensive understanding of a person's medical history is a danger in itself to the patients that they are treating. The Personally Controlled Electronic Health Records Bill 2011 seeks to address the situation by establishing the framework for individuals to have an electronic medical record. The record is intended to be an online system, which will include past and current medical conditions, medications taken, allergies, Medicare information and summaries of discharge information from hospital, as well as any information the person wishes to add themselves.
Unlike systems such as those in the tax office and other government departments, this system is not intended to be a centralised collection of information held on government computers. Instead, the system is designed to link the data sources around the country that already exist. For instance, many individuals already have an electronic record at their local GP clinic, chemist and hospital, and, rather than duplicate this or create a master record, the system is intended to allow each of these individual medical practitioners and health professionals to access those records through a single online portal.
Understandably, a person may not want all of the information shared. Through the system, participants will be able to choose who has access to what information. The system is also an opt-in system, allowing participants to activate and deactivate their records at their choosing. The scale of such a project is immense. The national State of our public hospitals report notes that in the financial year 2006-07 alone there were 16 million outpatient contacts with a further 24 million allied health services, including pharmacy, pathology and imaging services. Creating a system that can allow efficient access to such an enormous amount of information across a multitude of different systems requires significant research, testing and continual monitoring.
Ensuring that the proposed system is secure and workable is vital given its potential to save lives. Analysis by Booz & Co. suggest that up to 5,000 lives a year could be saved by having correct and timely information available through electronic records. But such a significant step forward is only part of the value that electronic records can provide. With proper planning, treatment can move from being responsive to being proactive. As the chair of the Parliamentary Diabetes Support Group, I and my colleagues who are involved in that group know all too well the importance of diabetics having records available to their treating clinicians. Diabetes Australia has developed a database of over a million Australians as part of their administration of the National Diabetes Services Scheme. Not only does it track the Pharmaceutical Benefits Scheme's subsidised medicines used; it can also be used to send reminders and advise of new products and services. This is important because it can tell the National Diabetes Service Scheme whether people are in fact taking the medication that is prescribed. We saw the tragic case of a young Western Australian girl who, in her teenage years, did not always take her prescribed medication, and she is now facing life having had a limb amputated and having serious kidney disease. So this can be a great benefit to preventing these kinds of situations from occurring.
Such initiatives in the private sector are commendable and provide a sound template which government can follow. Allowing this information to be combined as part of the electronic health system would also mean that a patient's normal GP could be alerted to considerations that might otherwise go unchecked, like patients not taking their prescribed medication. This could happen via a pop-up reminder to check the lower limbs, for example, of a diabetes sufferer—to check the feet—because we are all too aware that neglected problems with the feet can lead to limb amputation and other complications.
With proper development of this system medical treatment can shift from being responsive to preventative practices with patients confidently and proactively contributing to the management of their own treatment regimes. But it would appear that more development is required before this potential can become a reality. For instance, what assistance will be given to older Australians, the infirm and those from lower socioeconomic backgrounds to create and add to their e-records? These groups are often overrepresented within our hospital system and allied programs and could benefit the most from such a system, yet they are more likely to not have the resources or the knowledge to create an online health record. To brush such concerns aside and roll on with the project would seem counterproductive as the government would be creating a system that provides little benefit to those who need it most.
Another issue of concern in the transition authority submission is the privacy safeguards. On page 5 of that submission is the example of Christine Lee, who chooses the basic access controls which are meant to authorise only those providers involved in her care to view her records; but it appears that the basic setting—presumably the setting most people will choose—does not block other practitioners from accessing her details. In fact, in the example an interstate doctor accesses this young woman's information. Worse still, the only way that unauthorised access is discovered is by the patient themselves trawling through the computer log and picking it up. A strong analogy can be drawn here with unauthorised transactions on credit cards. While it is expected that everyone checks their statement, it is a common reality that most do not. To ensure unauthorised transactions do not take place, the bank's system highlights suspicious transactions based on a number of criteria. I would think that a similar system could be adopted with electronic records, with patients indicating the health providers who are authorised to view their records or with unusual transactions being flagged, highlighted or otherwise brought to the attention of patients.
The integration with other systems designed to assist the public should be considered as well. The submission of the National E-Health Transition Authority to the current Senate inquiry into this bill notes one benefit of online records is their availability when Australians travel overseas—but if the patient is incapacitated how can they access their records to give to foreign medical practitioners? Perhaps consideration should be given to linking the SmartTraveller website of the Department of Foreign Affairs with a tick box authorisation to allow the department to access those records in the event of an emergency when the person is travelling overseas.
Finally, it would seem prudent for the government to heed the warnings of the opposition. I note the member for Shortland was critical last night of the opposition, but one of the important functions of this chamber is to debate this legislation with a view to ironing out the bumps, to sorting out some of the problems, to make sure we get the best public outcomes we can for policy and the delivery of programs. It would therefore seem prudent for the government to heed the warnings of the opposition and the stakeholders and delay the system's full implementation until these critical issues are resolved.
Ms LIVERMORE (Capricornia) (09:33): I am pleased to be able to contribute to this debate on the Personally Controlled Electronic Health Records Bill and the Personally Controlled Electronic Health Records (Consequential Amendments) Bill. As I have said in many debates on bills in this House already, the government when elected in 2007 promised a major program of reform in our health system and here today we are debating yet another step along the reform path.
This bill puts in place the framework for personally controlled electronic health records that we want to see as a feature of a modern, efficient and patient centred healthcare system. I have said that we want to see this framework, but the reality is that we have to do this. Efficiency and quality patient care demand that the health system of the future runs on better managed information than it does now. The starting point has to be patients. Right now, patients do not own their health records or play any active role in the management of them. Information about an individual patient is generally scattered all over the place. Some will be held at their GP clinic, their pharmacist may have additional information and there will be more at the local hospital. Usually, the only way that information is shared across healthcare providers is when the patient physically carts a piece of it from one health service to another. More often, the information is shared by the patient repeating their medical history and current treatments to the healthcare professional sitting in front of them—and then the next one and then the next one. Those healthcare professionals have to hope that the patient remembers to disclose all relevant information so that they can treat them appropriately.
Mr Speaker, I had that exact experience myself over the Christmas break. I was fortunate enough to be holidaying on the Sunshine Coast, which I know is very close to your heart. I went to see a doctor there and, right at the end of the consultation, I remembered that I was taking some antibiotics at that time and told him. It was really just a fluke that that popped into my memory. In that circumstance it was not really important, but you can imagine how difficult it is for doctors. That situation gets harder and harder for patients suffering from multiple health problems or as they age and their health care becomes more complex.
Moving towards an electronic platform for recording, assessing and sharing patient data is not some kind of nice add-on our health system. It is not an optional extra or a novelty that might be picked up as a passing fad. This is a fundamental part of making our health system work better, with better health outcomes for patients and better use of our health dollars. That is clear when you look at what is happening in our current system of information management. Medication errors currently account for 190,000 admissions to hospitals each year. Up to 18 per cent of medical errors are attributed to inadequate patient information. These are mistakes that do not need to happen and they have serious repercussions for patients and health professionals. On top of that is the waste and inefficiency inherent in our current system. Studies in hospital environments have indicated that between nine and 17 per cent of tests are unnecessary duplicates. When you think of the pressures on our health professionals and the pressures on our health budgets the thought of that kind of waste of scarce time and scarce money is outrageous. There has to be a better way.
One of the first things we did when we came to government was to establish the National Health and Hospitals Reform Commission. The commission was tasked with presenting the government with a blueprint for a health system that would meet the needs of a growing and ageing population in a way that could be sustained financially into the future. The commission recognised the importance of e-health or telehealth more broadly but specifically identified that electronic health records will be a key element in progressing its reform themes of putting patients at the centre of the healthcare system and driving efficiencies to maximise the care delivered for every health dollar spent. A key recommendation of the commission therefore was that 'by 2012 every Australian should be able to have a personal electronic health record that will at all times be owned and controlled by the person'.
We have already put one building block in place with legislation for healthcare identifiers passing the parliament in 2010. Virtually all Australians now have an individual healthcare identifier automatically created by virtue of their connection with the Medicare or veterans' affairs systems. That identifier is their unique personal passport into the electronic health record system that is being established. The information about an individual patient attaches to that identifier and provides the basis for accessing and controlling that information.
Work is well underway towards the design and implementation of the electronic health records system led by the National e-Health Transition Authority. We are now approaching the 1 July 2012 date by which we want people to be able to register for an electronic health record and experience the benefits of the system. The personally controlled electronic health record will enable consumers to have easy access to their key healthcare information online and—very importantly—enable them to share it with their authorised healthcare providers where and when it is needed anywhere in Australia. It creates the capability for a patient's record to be available securely over the internet. That means that the information can be truly shared between all healthcare providers involved in the patient's care.
The beauty of the personally controlled electronic health record is that it has the capacity to bring together crucial information about a person's health and their medical history in the one place such that it will be immediately accessible to health providers in a way that is not possible now. Information now is fragmented and largely carried around in the patient's head, meaning doctors are often doing their job based on incomplete information.
Once in place a person's electronic health record can display clinical information in summary form, such as health conditions, allergies, medications and records of medical events created and added by healthcare providers. The record can also contain discharge summaries from hospitals and information from Medicare, including childhood immunisations and organ donor status. Individuals can also add their own information, such as any over-the-counter medications that they are taking and, if it is relevant, key particulars of an advanced care directive.
These bills provide a regulatory framework to complement the work that is happening at the infrastructure and operational level ahead of the 1 July start date. To start with it establishes the Department of Health and Ageing as the interim electronic health record system operator and sets out its functions and responsibilities and the advisory bodies to the system operator. One of those is jurisdictional and another is an independent body comprising consumer, clinical, privacy and IT expertise.
The most significant parts of these bills go to the questions of how a person creates an electronic health record and the conditions they attach to it, as well as the privacy and security protections that surround it. The bills provide for the registration regime which will act as people's entry into the system. There is also a registration process for healthcare providers and other service providers essential to the functioning of the system—for example, portal and repository providers.
It is important to note that registration is completely a matter of choice for consumers. There is no compulsion on people to opt for an electronic health record and the government has been very explicit in saying that in no circumstances will health care be dependent on having an electronic health record. A consumer who chooses to register for an electronic health record can set their own access controls to determine which healthcare organisations are permitted to access their personally controlled electronically health record. There are different levels of access controls available, so consumers can make access open to all providers involved in their healthcare or they can set the controls for much more limited access. In emergency situations it will be possible for healthcare providers to override the chosen control settings to access vital information but only in narrowly prescribed circumstances and with a range of safeguards attaching to that access, which would otherwise be unauthorised.
Another important point to make about registration for an electronic health record is that it is possible for an individual to participate in the system through an authorised representative. This recognises that many people accessing healthcare services do so with the assistance and support of a carer or family member. I note that this has been particularly welcomed by the Consumer Health Forum. The registration process will be an easy and streamlined exercise that can be completed by people online or through their local Medicare office or shopfront.
The part of the bills that underpins the whole transition to electronic health records is that dealing with protection of privacy and the security of information. The Information Commissioner has said:
Ensuring that privacy is adequately addressed is fundamental to achieving community trust in e-health information systems, and gaining consumer acceptance and take-up of the new systems.
That is a very important and obvious warning and for that reason the bar is set very high in this legislation.
The bills prescribe very clearly the circumstances in which registered consumers and organisations can collect, use or disclose electronic health record information. There are penalties in the bills for unauthorised use of the information, and the Privacy Act also applies to further protect users of the system. That means that the Australian Information Commissioner has authority to investigate breaches and interferences with privacy. Those legislative safeguards have to be in place, but the design of the system has its own security features that should give people confidence that their information is being accessed properly. Anyone accessing an electronic health record will leave an audit trail, so that the person who the EHR belongs to can go into their record and see every organisation which has viewed that record. It is their record; the individual sets the controls on who gets access to what information and they can see any interaction with that information. Of course, that is not something that is currently possible with paper records. As I am giving this speech I know that there are paper records of mine sitting in a file at the base hospital in Rockhampton, and I have no idea right now who could be looking at them or what they are doing with them. That is something that just will not be possible through the EHR system, where that audit trail is very evident to each person who has an EHR.
There are already 12 lead e-health implementation sites across Australia putting e-health innovations into practice. Already the benefits of electronic health records are evident. For example, Dr Raymond Seidler, a GP from Sydney, spoke earlier this year at an e-health launch for health professionals in Canberra. As an early adopter of electronic health records whose practice is connected to nearby hospitals, he has seen what is possible. He told the launch:
The hospital receives up-to-the-minute information including pathology tests performed by the GP and has all the demographic information required clearly legible.
He goes on to say:
Previously GPs have received handwritten letters which are often indecipherable from overworked hospital doctors. Some patients forgot to bring their letter to the GP and so much information was lost.
I think that all speakers in the debate have agreed that the benefits of the electronic health records system are self-evident and it is clear that we need to continue the progress towards putting in place this system. This was highlighted even further last week when I travelled with the regional Australia committee to, among other places, Moranbah, a mining town in my electorate of Capricornia. We were looking at the practice and experience of fly-in fly-out work arrangements in Queensland and, obviously, across Australia. One of the groups who appeared before the committee were representatives from Moranbah Medical, which is one of the GP practices in Moranbah. They spoke to us about their experiences of practice in a town where anywhere between 30 and 40 per cent of the population are non-resident in Moranbah—they are people who travel to Moranbah week-on, week-off according to their rosters, to work in the mining industry. They told us of the difficulties that presents to doctors. For example, in their practice they have a snapshot from June 2011 showing that 23 per cent of patients at that practice are non-resident in Moranbah and in many cases are presenting at that practice for the first time. These are not patients who necessarily belong to that practice, even though they are seeking the services of those doctors. It is not hard to work out the difficulties that presents to doctors, but I will quote from their submission:
Without a prior relationship with a patient, a lack of medical history or other information in an emergency can be very difficult to manage and carries dangers such as drug interactions/allergy risks.
That just highlights further the importance of having those electronic health records, particularly for people working in those fly-in fly-out situations. It is much better for the patient and much better for the doctors.
I understand that with this bill today we are still at the foundational stage of getting the personally controlled electronic health records system in place, but I would call on the government to ensure that, at the appropriate time, we have a very focused campaign in places like Central Queensland, targeting both consumers and health professionals, to promote the take-up of electronic health records in recognition of the highly mobile workforce in our region.
This is a bill that continues the government's proud record of health reform, and I commend it to the House.
Mr BRIGGS (Mayo) (09:49): I rise also in line with the coalition decision to support the Personally Controlled Electronic Health Records Bill 2011, but in doing so I want to put on the record some concerns relating to the direction in which this bill is going. No doubt, as the member for Capricornia just outlined, there are some very good reasons to have an effort made into e-health. The step towards electronic health records was started under the former health minister and now Leader of the Opposition, but I have some concern about that direction because I think it raises significant issues which society more broadly are grappling with as we move into the electronic age. In effect, our lives are run by the power of the internet—information gathered and put onto the internet. We read about this regularly now, particularly in relation to our children—their access to it and the information they place on social media websites.
There is a television advert at the moment where a young person, obviously very well-qualified and well-experienced, is applying for a job. The employer interviewing him talks about how well-qualified he is but then raises issues that he found on the applicant's Facebook site relating to his personal life. While we debate bills such as this, where we are talking about putting the most private and personal information about somebody into an electronic form that can easily be emailed between different healthcare providers, I think we need to understand the risk this potentially creates for people.
I understand that the government are quite convinced that the privacy measures placed within the bill address these issues, but I must say I am less than convinced by this government's assurances that they will get this right. As the shadow parliamentary secretary in this area, the member for Boothby, has highlighted, the government have not been seen to be particularly competent. I think that is fair to say. We have also seen with this bill, like so much else that they have done, a haste and a rush to implement this without the necessary consideration or trials first being undertaken to make sure that we get this right.
As I said earlier in my remarks, there can be no more private or personal information than somebody's health records. We all see medical practitioners and medical experts from time to time, and each of us has a trust relationship with those providers. They provide tremendous service to their patients, but they have access to the most private details about a person's life. There is a danger that, when this information is put onto an electronic record under a government mandated scheme—it no doubt exists now in doctors' surgeries and chemists across the country—it can be emailed or sent around without any guarantee that it will not find its way into inappropriate hands. The member for Capricornia said that provisions of the bill ensure there is an audit trail, but we all know that it is impossible to put the genie back into the bottle after it has got out. So I urge caution on the government about the haste with which it is implementing this initiative. There are good reasons to take this slowly and steadily, so as to make sure it gets it right. In the first place, I am far from convinced that this government is capable of doing that. Secondly, the importance of this information is such that it should be treated with extreme caution and care. It is what we would do in government; this government should do it as well.
These concerns are not unwarranted. We have seen in the past two years the most protected information of the United States foreign service leaked across the world through the disgraceful behaviour of the WikiLeaks organisation. Putting aside the morally corrupt attitude of that organisation and its willingness to put our service personnel in danger by leaking protected information, the fact that some of the most secure and protected information of the United States could be accessed and downloaded onto Lady Gaga CDs by a low-level officer of the United States army, it is alleged, means we have to be particularly cautious about electronic health record-keeping. It shows the depth of the information kept by governments and the power of the internet to expose this information. The WikiLeaks saga has shown that information cannot be protected absolutely. There is no way that the security of information provided under a government scheme, which can easily be emailed and sent around, can be absolutely guaranteed and protected. That is a real concern and it is a genuine reason why the government should take heed of these issues. These are genuine issues; they are not partisan issues. They are issues about the responsibility of ensuring that the Australian public's most private and personal information is kept in such a way that it is not accessible by people who should not have access to it. I fear that because of the haste with which the government is moving on this bill, these issues and some of the other issues that have been identified, particularly by members on this side, have not been well enough addressed.
I appreciate the fact that the government, in an attempt to address some of these concerns, has made this scheme an opt-in arrangement. I acknowledge that it has attempted to address some of these concerns. I hope that the government has got the opt-in aspect right. The provisions in the bill seem to indicate that this is a genuine opt-in and that an individual will have to make the decision to allow their information to be sent electronically between healthcare professionals. This is a very important part of the bill. I would hope that people give this due consideration when they make the decision about opting in. Medical professionals and bureaucrats will want this information. It is the direction the country has been taking in the last 20 years. It is a lot easier to do this now.
On the face of it, the simplicity and efficiency of having this information available to all people in the medical profession, so they can understand the background of a case, make a lot of sense. There is no doubt about that. An increasing number of government agencies are moving down the path of having individual customer numbers. Centrelink is one which has records relating specifically to people, which are available electronically. We are moving by stealth to what is in a sense an Australia card. We should be very careful that we are not moving by stealth, issue by issue, to some form of identity card. That is something this parliament should be very well aware of. The Australian people may be comfortable with that in the end, but they should be involved in the decision. It should not be something that just happens inch by inch, department by department, bill by bill. It should be the subject of genuine debate about what people think is their right to the privacy of their most personal information. It does not get any more personal than your private health records.
In line with coalition policy and the decision of the party room, I support this bill. I put on record my concerns about the risks relating to the privacy aspects. I say also that this has been rushed. We saw another example overnight of the failure of a scheme this government rushed through, with the early closure of another one of its green programs, the Solar Credits scheme. It brought back terrible memories of the pink batts debacle and the green loans debacle and of all the waste and mismanagement with which this government has engaged over time. It is a concern that this scheme has been rushed so much. The government should take its time with this issue. It should take care of this issue because it needs to get this issue right. It takes only one example of somebody's health records appearing, unauthorised, on the front page of a national paper to show us how very careful we should be about moving in this direction. We have seen with the issues relating to newspapers in London that there is an appetite for this type of information from people of note. I hope that through this bill there are enough protections, that we are being careful enough to ensure that the most private information of people is protected in a proper fashion.
On that note, I conclude by saying again that I will support in line with the coalition policy but I put on record some very strong reservations about this direction.
Mr McCORMACK (Riverina) (10:14): The Personally Controlled Electronic Health Records Bill 2011 and Personally Controlled Electronic Health Records (Consequential Amendments) Bill 2011 provide a legislative framework required for the management of the personally controlled electronic health records system. The personally controlled electronic health records system is designed to be a secure electronic record of a patient's important health information. This will allow for the health information of a patient to be easily transferred between a patient's health practitioners, such as between a patient's general practitioner and a medical specialist.
In the current health system, a patient is required to repeat their medical history and information each time they visit a different clinician. This can lead to poor information flows, extra or duplicated tests, delays and potential errors. As the electronic health records will contain patient information, including past and current medical conditions, medications, allergies, discharge summaries from hospitals, Medicare information, as well as any information the patient would like to add about themselves, health practitioners will be able to help overcome some of the current issues the current health system experiences in the transfer of information.
You could say at present that the system is mired in duplicity and, as with anything bogged down with procedure and red tape, it is the ones at the end of the line—in this case, patients—who are affected the most. In fact, it has been forecast by leading global consulting firm, analysts Booz & Co., that by 2020 e-health capabilities could save up to $7.6 billion each year by reducing duplications and errors, improving productivity and enabling better adherence to best practice. This is across all facets of e-health and not just electronic health records. It is also reported that a full e-health program could help avoid up to 5,000 deaths annually once the system is in full operation. That is a staggering statistic.
Significantly, this system will be entirely opt-in, meaning that people will need to actively apply for a personally controlled electronic health record. They will then be able to deactivate and reactive their record at any point in time. It is also important to realise that the personally controlled electronic health record is not a centralised data collection system. As most information already exists in GP practices, chemists, pathology groups and hospitals, this new system will link these existing data sources around Australia and will display them in a single online portal, confidentially.
Control of which practitioners can access a patient's record is left completely in the hands of the patient, as it should be. Patients can choose to allow only their general practitioner to access the information or they can allow all their health practitioners to have access. Importantly, this will also mean patients will have their entire medical history available to them anywhere they go. A patient with a personally controlled electronic health record who becomes ill while travelling will have access to their full medical history and will be able to make this available for the doctor or emergency department they visit. That is so important, particularly when people go on holidays and, as we all know, things sometimes happen on holidays. And for families with children who may fall ill that will be a great advantage if they are able to access that sort of information anywhere, at any time, on a personally controlled health record system.
All data which a patient uploads onto their personally controlled electronic health record will be protected by the provisions of the 1988 Privacy Act and the Information Commissioner will have the powers to investigate any complaints or potential breaches of privacy. Whilst the information will be protected by these provisions, there is some issue with overlapping and confusing jurisdictions in the privacy arena based on the federal/state control of privacy provisions. It is yet to be seen how these concerns will be rectified and addressed, yet they must be fixed to give assurance to patients that anything they upload will remain private. Anything that is uploaded on their behalf will remain private. Patient confidentiality and trust in the system are paramount. In discussions with my constituents in the Riverina, they have stressed to me just how important this particular point is—that patient confidentiality must be absolutely paramount.
The coalition will not be opposing either of these bills and has always supported the concept of a shared electronic health record. Under the coalition government, 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 during those years. Whilst the coalition does not oppose these bills, there are some concerns which have been raised over the way in which the system is to be implemented.
The government has repeatedly stated that the personally controlled electronic health records will be able to take user registration from 1 July this year. Despite this assurance, the majority of industry experts and peak health bodies hold grave doubts that 1 July will be achievable. In fact, the President of the Australian Medical Association, Dr Steve Hambleton, said:
We predict it will be many years before the PCEHR becomes ubiquitous in health care.
The Australian Medical Association is also concerned that the medical profession will be lumped with the administrative burden of implementing the PCEHR system. Further:
'Our concern is that the PCEHR may add to the 'information chaos' apparent in today's medical practices ... this phenomenon is one in which problematic information arrives from many sources and can impair physician performance, increase workload, and reduce the safety and quality of care delivered,' according to Dr Hambleton.
This legislation was introduced to the House only on the last sitting day of 2011, and like so many other Labor announcements the government proposes a major reform and then plays catch-up to meet its own deadline. A Senate inquiry on these bills is due to report today. This government is guilty of rushing through legislation without proper scrutiny, and these bills are no different.
It was only on 24 January 20102 that the National E-Health Transition Authority announced that work on primary care desktop software development at its test sites had been halted due to the discovery of 'technical incompatibilities across versions' and that there was 'potential clinical risk' if work continued using the specifications supplied. There are also well-founded concerns about the future costs of the personally controlled electronic health records and the ongoing funding for the National E-Health Transition Authority.
The government needs to be transparent about the future long-term costs of managing and operating this program and the future funding contribution through the Council of Australian Governments, COAG, for the National E-Health Transition Authority. The current funding agreement for the National E-Health Transition Authority is due to expire on 30 June 2012, the day before the personally controlled electronic health records go live on 1 July 2012. The Standing Council on Health has agreed to fund the National E-Health Transition Authority after 30 June 2012, but no details have been released as to the agreed level of funding. The government has allocated just $35 million per year over the next three years for e-health implementation.
The Medical Software Industry Association is rightly perturbed 'that there are severe penalties in place for breaches of the Act from 1 July 2012 although the rules are not determined and there will be very short periods of time for the parties to understand and establish procedures for compliance with complex new obligations'. Fundamental to this is the problematic policy decision not to provide incentives or recompense to system participants who are nevertheless expected to contribute extensively to the PCEHR and, while doing so, assume significant risk in the event of breaches.
The Pharmacy Guild of Australia joined the chorus of condemnation against the rushing through by Labor of this legislation. Presently there is no ability for a pharmacy to add a patient's medication history to the PCEHR and there is no strategy or process in place at this time to enable this to occur. The electronic transfer of prescriptions is a reality in both pharmacies and surgeries now, and as it stands about 3.2 million records could be added to the PCEHR weekly through this system. The Pharmacy Guild has fears that the national infrastructure required to underpin the uptake and adoption of the PCEHR will not be ready within suitable time frames to enable adequate use of the system. But does this matter to Labor? The Leader of the House likes to spruik about the number of pieces of legislation which this minority government has passed; it is one thing to pass bills, but it is another for them to be implemented in the wider world.
As the PCEHR is a technology based system, it dates very quickly and there is a notable silence from the government on the future costs. There has been no comment or discussion about the long-term costs relating to ongoing maintenance of the system, upgrades to the system or the provision of a help desk or support staff for the system. The government needs to advise what these costs are going to be or potentially could be. We cannot afford to end up like the United Kingdom, where £12 billion has been spent on its e-health record equivalent, started in 2005 and canned in late 2011.
Personally controlled e-health records are a step in the right direction for the future leading to an easier flow of information between patients and health practitioners. Ultimately this system will save lives. However, it is important that the government is clear from the outset on the costs of this system to ensure that it does not become an undue burden on the taxpayer and instead works towards the goals it has been established to achieve.
Mr MATHESON (Macarthur) (10:25): Today I rise to speak about the Personally Controlled Electronic Health Records Bill 2011 and the Personally Controlled Electronic Health Records (Consequential Amendments) Bill 2011. The coalition will not oppose either of these bills but we do recognise a number of concerns that have been raised about this legislation and the government's implementation of the personally controlled electronic health records rollout. My main concern with these bills, like any other concerns I have raised in this House, is the effect they will have on residents in Macarthur. I do, however, believe that if managed and implemented correctly the electronic health records system will be a positive thing for my community, especially our most vulnerable residents.
I am proud to say that the coalition has a strong track record of investing in e-health. Under the coalition government, computerisation of general practice increased from 17 per cent in 1997 to 94 per cent in 2007, as we have heard a number of members mention today. This was achieved through a $740 million investment over those years. We originally started the focus on a shared electronic health record and have always supported the concept. Unfortunately, despite the Howard government's focus and direction towards e-health, Labor's implementation of the system since taking government in 2007 has received much criticism from the industry for their poor management of the program's development.
The bills before the House today provide the legislative framework required for the management of the personally controlled electronic health records system. The new e-system will allow for the health information of a patient to be easily transferred between the patient's health practitioners, including GPs and specialists. As it stands now, a patient has to repeat their medical history and information to a doctor each time they visit a different clinician. We all know what it is like trying to relay our own medical history to a new doctor or specialist. It can be extremely difficult for sick or elderly people, who may have a long list of past illnesses, allergies, hospital stays and treatments to remember. Repeating this medical history to each new doctor can result in poor information flow, extra or duplicated testing, delays and potential errors.
The electronic health records are designed to be a secure electronic record of a patient's important health information. The record will contain a great deal of patient information, including past and current medical conditions, medications, allergies, discharge summaries from hospitals and Medicare information, as well as any information the consumer would like to add themselves. Each patient will have the ability to determine who has access to their record and how much information is visible. I believe this is a positive step forward for patients, practitioners and our health system. It has been forecast that by 2020 electronic health records could save up to 5,000 lives and $7.6 billion each year by reducing the duplication of testing across Australia.
I am, however, aware that several concerns over privacy issues in relation to health records were raised during public hearings of the Senate inquiry into the bills. It is important that we make clear to the public that this system is a purely opt-in system, which means that a person will need to actively apply for an electronic health record. They can then de-activate and reactivate their record at any point in time. Also, the electronic health records will not be in a centralised data collection. The program is designed to link up the data sources around the country that already exist in GP practices, chemists, pathology groups and hospitals. Those who register for an electronic health record will be able to choose their own settings, including which practitioners can access their record and how much of their electronic health record they can access.
The system has been designed to ensure that the patient will be in full control of who sees what information and when they are allowed to see it. I am concerned, however, that this is not the case in either of the trials currently under way, and it remains to be seen whether this will be the case after 1 July this year. Patient's data will also be protected by the provisions of the 1988 Privacy Act, and the Information Commissioner will have the powers to investigate any complaints or potential breaches of privacy. But, while this is the case, there is an issue with overlapping and confusing jurisdictions based on the federal/state control of privacy provisions. This is something that must be rectified before the rollout of the system in July this year. This also brings me to my next concern. Why are we debating these bills before the Senate inquiry has publicly reported on its findings? We have seen this situation so many times: Labor announces a major project and then scrambles to meet its own deadline. This legislation was only introduced to the House on the last sitting day of 2011. Now it is up for debate, before the Senate inquiry into these bills concludes on 29 February. In its public hearings on 6 February the Senate inquiry heard testimony highlighting a number of stakeholder concerns with these bills. I would think that it would be important for the Minister for Health and the government to defer debate on these bills until the Senate inquiry has publicly reported on its findings. However, we know that this government is famous for rushing through legislation without proper scrutiny, and these bills are no different.
A number of concerns have also been raised over the future costs of the system and the ongoing funding for the National E-Health Transition Authority. The government needs to come clean on the future long-term costs of managing and operating the program and the future funding contribution through the Council of Australian Governments to the transition authority. I believe the taxpayers in Macarthur and all over Australia have the right to know what the future long-term costs of this system will be.
The government has only allocated $35 million per year over the next three years for e-health implementation. Like any computer network or IT system, technology dates very, very quickly, so there needs to be some forecast of the future costs of these issues. There has been no comment on or discussion of the long-term costs relating to ongoing maintenance of the system, upgrades to the system or the provision of a help desk or support staff for the system, so you can see there are a few holes there. We only need to look at the situation in the United Kingdom, where they have spent £12 billion on their e-health record equivalent, which was scrapped in late 2011. This is not a scenario we can afford to impose on the Australian taxpayer.
Another primary concern that has been raised is the lack of encouragement or incentives for general practitioners to create the shared health summaries as part of the system. The summary is a collection of the patient's medical history and will make up one part of the patient's electronic health record. It is expected that a patient's general practitioner will spend additional time and effort creating and maintaining these shared health summaries, but they have been given no incentive to do so. We need widespread support from our general practitioners because they primarily will be the driving force behind the system's success.
While there are many concerns which need to be addressed before the rollout of this system on 1 July, there are a number of perceived benefits of an electronic health record system for this country. It has been forecast that by 2020 e-health capabilities could save up to $7.6 billion each year by reducing duplications and errors, improving productivity and better adherence to best practice. These figures are for all facets of e-health, not just electronic health records. The government's own numbers suggest that the benefits of e-health records alone in Australia would be $11.5 billion to 2025.
In addition, the same report suggests that a full e-health program could help avoid up to 5,000 deaths annually once the system is in full operation. It goes on further to state that a fully implemented e-health system could avoid up to two million primary care and outpatient visits, 500,000 emergency department visits and 310,000 hospital admissions annually. Importantly, it will also mean that patients have their entire medical history available to them anywhere they travel. How many times have we seen Australian people become injured or sick overseas? If a patient with their own personal electronic health record becomes sick whilst travelling, their full medical history will be available for the doctor or emergency department that they visit.
I do believe the positives of this system outweigh the negatives. This is why the coalition do not oppose this legislation, but we reserve the right to move amendments following the outcome of the Senate inquiry. I know that there are many people in Macarthur who will benefit from having their own electronic health record, but like all Australian taxpayers they deserve the right to know how much this system will cost them in the long term. This is why I support all of the positive features of this e-health system but cannot fully support this legislation until the findings of the Senate inquiry, released later this week, are dealt with appropriately. What is wrong with constructive criticism and deliberate scrutiny to deliver good policy? I think that is exactly what we should be doing in relation to this legislation.
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.
Ms PLIBERSEK (SydneyMinister for Health) (10:49): It is a great pleasure to sum up on this legislation today, the Personally Controlled Electronic Health Records Bill 2011 and the Personally Controlled Electronic Health Records (Consequential Amendments) Bill 2011. I thank members for their consideration of this legislation and their contributions to the debate on these bills.
At present, consumer health records are scattered over a range of locations and clinics rather than being attached to the consumer and easily available at the point of care. This means that consumers need to retell their story every time they visit a different healthcare provider. This outdated approach can result in things like unnecessary retesting, delays and medical errors. For example, we know that medication errors cause about 190,000 admissions to hospital each year, with eight per cent of those errors being due to inadequate consumer information.
I can tell you a story that was told to me by a doctor married to another doctor—a two-doctor household. The father of one of them was living with them and he collapsed in a shopping centre one day because his GP, his heart doctor and another specialist had all changed his medication independently without talking to each other. When they discovered this change, it was completely predictable that this combination of medicines would have had an adverse effect on the patient, but because the doctors were not able to check each other's prescribing an adverse effect occurred. That is just one example of the 190,000 people admitted to hospital each year because of things like medical errors and medication errors.
The Personally Controlled Electronic Health Records Bill 2011 before the House today establishes the essential IT and governance infrastructure that allows consumers to set up their own personal electronic health records—computer based records that can be accessed anywhere there is an internet connection. That means that records can travel with consumers clinic to clinic and doctor to doctor at the click of a button.
We had some criticisms from the member for Bradfield yesterday saying that this should be an opt-out system rather than an opt-in system. He was strongly contested by the member for Mackellar. The reason that we have made this an opt-in situation is that it is important that people feel ownership of their records and feel confident that this is something that they want and want to participate in. Once this essential infrastructure is in place later this year, consumers will be able to opt in and begin registering for personal electronic health records and accessing a range of basic information on their own health care.
Over time, as people register and we work with both consumers and healthcare providers to build on this infrastructure, more detailed and sophisticated features will be available as part of an electronic health record. A number of speakers are worried that this is the big bang—that it is the whole rollout all at once. It is important to emphasise that this is a gradual process starting in the lead sites and allowing individual patients to register, at a time of their own choosing, in a system that will build over time. Just as you would build a house, this legislation helps to lay the foundations for e-health today—strong foundations that will underpin the development of the sector as it expands into the future. This is about developing the foundations of that system carefully and systematically. We are very aware that this is a complex area of reform and a that a national e-health records system will have to be built over time as both consumers and healthcare providers join the system. But since 2010 we have been working closely with consumers and with healthcare providers. To get this right we will continue to keep talking and working with these groups.
Establishing a national e-health records system is part of the government's e-health agenda. It is an agenda that builds on the work of GPs, hospitals and other healthcare providers and that is integrating modern technology into day-to-day health care. Already, 97 per cent of GPs have access to computers and 96 per cent have access to the internet in their consulting rooms. I congratulate doctors for supporting this technology becoming part of their practice, with all of the benefits of improved efficiency and accuracy it provides.
I was in a fantastic GP superclinic a couple of days ago down at Shell Cove family practice, and I was looking at the computer technology they use. That technology allows them not only to access individual patient records but to search within their patient database for people who have a particular condition. If, for example, they get new information about a better way to treat diabetes they can look for every patient who has got diabetes and systematically contact those patients and say: 'We have got new information for you. Would you like to come in and talk about this new information?' They can search for young women who are smokers and contact them and say, 'Did you know about this new measure that might help you?' This government has put lower strength nicotine patches on to the PBS. They can contact people who are smokers and say, 'Have you considered this treatment for you?'
The potential is not just in transferring old paper based records into electronic records but in the tools that it gives practitioners to better serve their patients—the people that they have regular contact with. We are providing significant support for GPs and other front-line healthcare providers to take up new technology, including, from the middle of this year, the e-health records system. For example, the Practice Incentives Program provides up to $50,000 per practice to over 4,000 general practices to support the adoption of e-health initiatives. The government is also supporting Medicare Locals to provide general practices with on-the-ground assistance to improve their readiness for e-health, including help with improving the quality of their data and records. We are keen to make processes as easy as possible for GPs so that they will be able to use existing Medicare rebate items in the preparation of clinical notes if they are viewing or adding information to a consumer's e-health record during a consultation. In 2010 this government committed $467 million to a two-year program to build national personal electronic health records infrastructure, and this legislation is part of delivering on that commitment.
A number of opposition members have mentioned an article in the Australian written by Karen Dearne on 28 February—yesterday—about e-health blow-outs. Despite the fact that I corrected the record yesterday during this debate, members opposite continue to use this inaccurate reporting. I am very disappointed that the opposition continue to be prepared to ignore fact. The two main sources of funding for the e-health agenda are the personally controlled electronic health records allocation and the COAG approved funding. Both of these sources of funding are within budget. The personally controlled electronic health records allocation is $467 million over two years. This allocation goes towards the National E-Health Transition Authority, Medicare support, the 12 e-health pilot sites and the national infrastructure partner—that is, not the National E-Health Transition Authority alone.
The National E-Health Transition Authority also receives funding announced by COAG. Currently, that funding is $218 million over three years. The Commonwealth contributes 50 per cent of this funding, which is around $109 million. The Commonwealth's portion of this funding is used for e-health related activities other than the personally controlled electronic health records system, such as healthcare identifiers, e-prescribing, standards and specifications, and the National Authentication Service for Health. The $760 million figure cited in the Australian cannot be reconciled with either the personally controlled electronic health records system or the COAG funding allocations. It seems to have been reached by making significant errors in calculation, including the double counting of funds. The majority of the figures that are added together to reach $760 million are actually part of the $467 million budgeted investment, including the quoted $21 million, $89 million and $38½ million funding announced for the National E-Health Transition Authority. In addition, the $136 million figure used in the media includes $109 million allocated by COAG and a carryover from the previous COAG funding period from 2009 to 2012. They seem to have been simply added together and, in many cases, double counted. It is very important that the opposition acknowledge that this inaccuracy, which they continue to repeat, does not reflect the budget position of the e-health rollout that we are talking about. Throughout the development of this infrastructure there have been extensive consultations with clinicians, with consumers and with health IT industry individuals and bodies. We are looking to the health sector and technology experts to innovate and to implement the rollout of e-health. The national e-health records system will place the individual at the centre of their own health care by enabling access to important health information by individuals, and their healthcare providers, when and where it is needed. Individuals can choose whether or not to have an e-health record and, if they choose to participate, they will be able to set their own privacy and access controls. Yesterday, the member for Mackellar suggested they could carry a USB stick with their private health information on it. Mr Deputy Speaker Leigh, I think you would understand—as certainly the member for Boothby would—the danger of leaving your USB stick lying around is very significant indeed.
As the records created by healthcare providers evolve over time they will have the capacity to contain health information such as conditions, medications, allergies and records of medical events. The records will also be able to include discharge summaries from hospitals, information from Medicare and some information entered by consumers. Some have expressed concern that patients will not enter some information or that they will try to take information away. It is important to realise that patients do not always tell their doctors everything that the doctor would like to know and, when patients visit a variety of different doctors, the clinician often gets only part of the story. E-health increases the likelihood of having full information from the patient.
We know that consumers and healthcare providers need to have confidence in the e-health records system and the information it contains, so it is critical to implement a legislative framework that provides for robust, transparent governance and appropriate protections for participation in, and use of, the system. The Personally Controlled Electronic Health Records Bill 2011 will do just that. Key elements of the bill will establish the system operator and its advisory bodies, a registration regime for consumers, a privacy and security framework and associated penalty mechanisms, and the circumstances in which information in the national e-health records system can be collected, used or disclosed by particular parties. The bill also provides for the legislation to be reviewed after it has been operating for two years.
Much has been made in this debate of cybersecurity and privacy matters and I want to take a moment to address those in a little more detail. Strict operational rules, along with existing provisions in the Criminal Code and criminal offences for related matters such as cybercrime, will work together with the civil penalties in this bill to protect consumers and the national e-health records system. The civil penalties in the bill are significant, including possible fines of several million dollars. The bill will apply across Australia in all states and territories, so it has been developed to work with existing Australian laws wherever possible. The consequential bill will make amendments to the Healthcare Identifiers Act 2010, the Health Insurance Act 1973 and the National Health Act 1953 to enable the use of healthcare identifiers in the operation of the national e-health records system, and allow access to certain Medicare information for inclusion in an individual's e-health record. This is a once-in-a-generation opportunity to deliver important reforms starting with the foundation and infrastructure. These bills are part of the government's bold health reform agenda: reform that will make it easier for consumers to receive the right care when they need it, where they need it. I commend the bills to the House.
Question agreed to.
Bill read a second time.
---- End Transcript.

8 comments:

B said...

To me,the most important paragraph in this whole debate is from Andrew Laming, a GP and with lots of other relevant health qualifications:

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.

Or, to put it another way: The argument is not about the goal of eHealth, it is about the way in which eHealth is being implemented.

Anonymous said...

The Opposition supports the Bill that is not the issue - as 3/02/2012 10:02:00 AM said it is all about the way eHealth is being implemented.

Get it wrong and we are faced with a monumental failure.

Anonymous said...

Ms LIVERMORE said at 9.33
“The commission recognised the importance of e-health or telehealth more broadly but specifically identified that electronic health records will be a key element in progressing its reform themes of putting patients at the centre of the healthcare system and driving efficiencies to maximise the care delivered for every health dollar spent. A key recommendation of the commission therefore was that 'by 2012 every Australian should be able to have a personal electronic health record that will at all times be owned and controlled by the person'. “

The truth is that e-health and telehealth were after thoughts by the HHR Committee which added them to the agenda as a Supplementary Report following much outcry and teeth gnashing on this blogsite and by the MSIA.

Anonymous said...

As Mr McCORMACK (Riverina) (10:14)sad "The current funding agreement for the National E-Health Transition Authority is due to expire on 30 June 2012, the day before the personally controlled electronic health records go live on 1 July 2012."

The logical extension of that is .... and whatever funding is required to continue the program for another 12-24 months it will be made available before the end of the financial year in the MAY Budget. So NEHTA's future is secure.

B said...

re:
"The logical extension of that is .... and whatever funding is required to continue the program for another 12-24 months it will be made available before the end of the financial year in the MAY Budget. So NEHTA's future is secure."

I'm not sure there's anything logical about that statement.

It may be a fact, in that a decision has been made but is not yet public, however, it is not a guaranteed consequence.

Anonymous said...

Either Minister Plibersek has her numbers right or The Australian has them right. Any idea which one of of them is wrong?

Anonymous said...

Mr McCORMACK (Riverina) (10:14): said " The Pharmacy Guild of Australia joined the chorus of condemnation against the rushing through by Labor of this legislation. Presently there is no ability for a pharmacy to add a patient's medication history to the PCEHR and there is no strategy or process in place at this time to enable this to occur. The electronic transfer of prescriptions is a reality in both pharmacies and surgeries now, and as it stands about 3.2 million records could be added to the PCEHR weekly through this system."

Why is there no strategy in place to enable this to occur? Wasn't this a central plank of the Deloitte National eHealth Strategy?

Anonymous said...

Anonymous 3/02/2012 02:03:00 PM asked why pharmacy records cannot be put into the PCEHR. This would be possible by either:
- prescriptions and dispense records copied to the PCEHR
- pharmacist access to shared health summaries or other mechanism to update medication lists

The first option is not possible because the prescription records are not available to anyone unless they have the special code. (This is both with the current implementations and the proposed standards.) I have not seen an adequate explanation for why this is necessary. There is no reason both prescription and dispense information should not go directly to a PCEHR conformant repository.

The second option is not possible because
- only medical practitioners can produce shared health summaries
- AMT has not yet reached a level of sophistication that allows proper consolidation of medications

There are also aspects such as recording compliance and adverse reactions that are not covered by the prescriptions/dispense records.

This area needs pilots and research.