Brand new eHealth strategy off to a bad start

I recently participated in a webinar organised by the Department of Health. It was supposed to be a consultation about the uptake of eHealth.

It went something like this: “We want to gain feedback from GPs about how we can get you to use the eHealth. This is how we’re going to do it; we’ve already organised training and we’re kicking off after the Christmas break. But before we start this session you must know that we cannot consider other options or timeframes.”

I was speechless. Literally – as I was not allowed to speak. I could only send little text messages via the closed online question platform. I was unable to see the feedback from other online participants.

Meaningful use

For years health providers have repeatedly said, if you want to make eHealth a success please take us with you.

The government is talking about new incentive payments to practices, ‘refreshed’ training programs and opt-out instead of opt-in, but there is little mention about improvements that make health providers want to use the PCEHR (now called ‘My Health Record’).

It is concerning is that the current plan mainly encourages uploading of documents. What should be facilitated is safe and more efficient care for our patients. At the moment it seems to be all about the number of uploads to the system. I cannot help but wonder what higher level performance indicators are at work here.

Any incentive has to be effective at provider level to create behavioural change. In other words, we must encourage individual practitioners to use eHealth, not just organisations and practices.

It is no surprise that the government failed again to enlist support from the profession. In its submission to the Department of Health, the RACGP wrote:

“(…) the RACGP cannot support the proposed mandatory requirements for the uploading of a specified quota of clinical documents to My Health Record. Meaningful use is not just uploading information to My Health Record, and nor is uploading information an acceptable starting point for meaningful use. Meaningful use relates to safety, quality, communication and healthcare outcomes – not merely numbers.

Unresolved issues

E-health experts have warned that the system is still unsafe. For example, some software programs merge medication dose and instructions. Others have warned that the uploaded clinical information does not always arrive in the My Health Record database.

Then there are the unanswered medicolegal issues. As I said in MJA Insight, I would be happy if the data in My Health Record was used for other purposes such as disease surveillance or even feedback on my clinical management but, in the end, it is the patient’s record and they must have a say in it. A proper consent procedure is essential for any use of PCEHR data outside individual patient care.

It appears the  system operator is currently authorised to collect information in individual health records for law enforcement, health provider indemnity insurance cover, research and public health purposes, and as required or authorised by law. This process should be more transparent with a better explanation of what it means for both patients and providers.

Removing the need for provider participation agreements is needed as these documents are very one-sided. It is not clear to me what this will mean for the liability of organisations, practices and individual practitioners.

A failing strategy

It is challenging to have a  discussion about incentivising uptake of eHealth when there are so many unknowns. It’s like trying to sell a house that’s still being built and everyone knows there are construction issues. Pushing people to live in the house does not make it a safer or a better building.

The RACGP warns against hastily implementing incentives and advises the department to wait for the outcomes of the Primary Health Care Advisory Group review, the MBS review, and the opt-out trials which are due to start.

Once the identified problems with My Health Record have been addressed and resolved, the RACGP believes that uploading of patient information to My Health Record would be best supported by a practitioner incentive payment (SIP) or an MBS rebate.

It will be interesting to see the response from the department. I’m afraid that history will repeat itself: they’ll go full steam ahead, only to discover in one or two years time that the strategy didn’t work. What do you think?

The e-health challenge: an interview with NEHTA Chair Dr Steve Hambleton

In the 2015 Budget the Federal Government has allocated significant funding to improve the electronic health record system for all Australians. The personally controlled e-health record gives patients a lot of control, but many healthcare providers are still concerned about the medicolegal risks embedded in the system.

I had the privilege to speak with Dr Steve Hambleton, former AMA president and Chair of the National E-Health Transition Authority (NEHTA), about some of the concerns voiced by doctors and consumers.

It appears there are various sticks and carrots in the pipeline to get more healthcare providers on board, but there is no sign that for example the heavy-handed PCEHR Participation Contract for providers will be changed.

The good news is that Dr Hambleton expects the current national infrastructure will help other providers and products – different to the PCEHR – to emerge in the near future.

Here is the transcript of our conversation:

Dr Steve Hambleton
Chairman of the NEHTA-Board Dr Steve Hambleton. Image: LinkedIn

Are you enjoying your role within NEHTA?

“I think I am now!”

I assume you are happy with the allocated funding of $485 million for e-health over 4 years in the latest budget?

“Yes absolutely. I think it does two things: It restarts the momentum of e-health in this country, and the Federal Government has now sent a signal to the State Governments and the e-health community saying: ‘we are serious about e-health and we want to get an outcome; we want to get some returns.’ If you think about it, we’ve really had no momentum since about September 2013.”

The budget indicated that NEHTA will cease to exist as suggested in the Royle report – what will your role be after the transition?

“I hope to be able to contribute in some way, but there are no announcements about it as yet. NEHTA can now complete its task of setting up the infrastructure and I guess the Australian Commission for E-Health, if it goes forward as proposed, can take it to the next step of more meaningful and better use of e-health.”

What is the difference between NEHTA and the proposed Australian Commission for E-Health?

“I think the main difference will be in the governance, not so much the strategic direction. We recommended in the Royle review to put users and people who can meaningful influence the direction of e-health on the governance board, so the influence is there at the highest level.”

According to the PCEHR Act 2012 the PCEHR has four purposes: to help overcome fragmentation of health information, improve the availability and quality of health information, reduce the occurrence of adverse medical events and the duplication of treatment, and to improve the coordination and quality of healthcare provided to consumers by different healthcare providers.

It appears however there are least 5 other purposes of the PCEHR spread out throughout the Act:

  1. Law enforcement purposes
  2. Health provider indemnity insurance cover purposes
  3. Research
  4. Public health purposes
  5. Other purposes authorised by law 

Especially the last one seems a catch-all category. There seems to be a lack of information about what happens with our patients’ health information in the PCEHR. What are your thoughts on this?

“We should probably engage with the minister now to gain a better understanding of where they want to go with e-health, but if we simply mechanise what we’re doing with paper records we really can’t reach the benefits of electronic health. We have to analyse the data we’re creating and use that to improve care and understand outcomes.”

“For example, when a new drug is released into the community we want to know: does it actually deliver the same outcomes as when the drug trials were run? We need to make sure that the healthcare we are providing does make a difference and does get an outcome, so we do need to analyse the data. Whichever way we go, the performance of the system is going to face more transparency as time goes on, and I think the profession is beginning to understand that.”

“We need to analyse individually what we do in our practices; all the colleges are now saying: ‘as part of continuous professional development we want you to reflect on your activities within your practice and show us how you modify your activities to get a better outcome.’ That will apply to GPs, specialists, hospitals, and the systems need to be analysed as well. We can’t do that unless we have a common dataset and I think that’s what e-health gives us.”

We need more information about what the government will and won’t do with the data because the PCEHR act 2012 seems to allow for almost anything. 

“I think that’s probably a question we should put to the minister. We need to hear what’s in their heads. I don’t have any knowledge about what’s in the government’s mind.”

The data is kept by the government for 130 years, is that right?

“My understanding is that’s correct yes.”

Do you think patients are aware of this?

“I can’t answer that question, I couldn’t tell you what patients are thinking but certainly from the day-to-day interaction with patients it’s surprising to see how many people think we’re already sharing information about them and use that to try and improve the situation.”

Even if healthcare organisations or practices cancel the PCEHR Participation Agreement, 7 of the 14 clauses contain paragraphs that survive termination, including liability. Although practices may have signed up to access the incentive payments, they may be concerned about the fact that the contract has clauses that, once signed, will be perpetually binding. It makes sense to adjust the contract to entice clinicians to participate, doesn’t it?

“My comment would be that we’re bound by good medical practice in any case, no matter what we do in relation to our patients. Decisions that we make are expected to be in their best interest. And putting my AMA-hat on, our interaction with e-health should be no different and shouldn’t require any different concept than when we are interacting with patients in other ways.”

“E-health is a different way of interacting and recording data and I guess that’s why we’re well-educated and insured and act in the patient’s best interest. If you look at good medical practice and say well that’s the guidance that we’re all subscribe to, than this should apply to any interaction including e-health.”

But 130 years seems like a long time.

“We’re expected to keep paper records for a period of time and every time I try to get information about this, you know, nobody will give you a clear answer when you can dispose of them. Theoretically it might be seven years since you last used them but if you talk to a medical defence organisation they say: ‘well if you keep them longer that would be good.'”

“I’ve got electronic health records in my practice dating back to 1995 and you wouldn’t think of destroying any of those. I think it’s one of those areas that you think: is this information permanent? I mean, in 130 years is it going to be in a form that’s usable? I guess it’s one of these things we don’t know the answer to.”

How do we get doctors to use the PCEHR?

“Doctors have been sitting back asking: ‘well why should I engage with e-health when it’s not certain if the government is actually going to support it?” There has been a lot of uncertainty. We now have a strong signal from the government that e-health has a future and that we have a national infrastructure that we’re going to use.”

“Then we need to say to doctors: ‘well what is the benefit here?’ The primary beneficiary is the patient. The information collected that they can manage will provide the next doctor they see with accurate and up-to-date information. Specialists and public hospitals can get quick access to the curated information.”

“The reality is it’s going to make our lives easier and make our search time shorter and provide us with rapid access to accurate information. Opt-out ofcourse means that when you look for a PCEHR there’s one there; if the patient has been in hospital there will be a discharge summary; if you want to upload something it’s not complicated and you don’t have to sign people up. It will be more efficient.”

The budget mentioned revised incentives, can you tell us more?

“Nothing specifically, but I have no doubt that the practice incentive payments program will look at incentivising doctors to use electronic health records. Their software has to be SNOMED compliant, they need to have secure messaging protocols and be able to send messages between doctors and patients and utilise the e-health infrastructure. I think that’s going to happen.”

A problem with practice incentive payments is that they go to practices, not to doctors who are interacting with the PCEHR.

“It depends on how practices have set themselves up but you’re quite right. The Royle review recommended that there should be a link between annual health assessments, care plans and utilisation of e-health. This would be a direct reward for doctors if they interact with the e-health infrastructure. The government has indicated that it is going to try and implement the major recommendations of the Royle review.”

GPs could interpret a link between care plans and e-health as the government forcing them to use the PCEHR, because if they wouldn’t their income drops.

“It is by no means a definite outcome. It is something the PCEHR review commission thought would be worthwhile. The Primary Health Care Advisory Group [of which Dr Hambleton is chair as well] will consult with senior members of the profession to see what they think. I think it is pretty clear that people with high needs and chronic diseases would benefit from better electronic communication.”

I agree that certain people with chronic diseases could benefit from e-health. Many GPs however are weighing up their own risks of participating against the benefits to their patients, and that’s where some of the concerns come from.

“Yes, I think we should all look at issues like that. I suppose we will be looking to our indemnity providers to give us some guidance. The AMA has put out a guide for the use of the PCEHR which gives pretty good guidance. But if e-health reduces the risks for our patients and improves the care to our patients everybody is going to support it; if it does the opposite then they won’t.”

“I just want to make one more point. We focus on the PCEHR, and I understand why, but so many people have called me out and said: ‘we’ve spent a billion dollars on the PCEHR!’ but actually we haven’t. The national infrastructure that underpins the PCEHR is really critical for a successful e-health strategy.”

“Think about the individual health identifier, the individual practitioner identifier, practice identifier, SNOMED CT, Australian medicines terminology, secure messaging protocols and also a national product catalogue plus a national health services directory.”

“All of this basic infrastructure is built and can be used by other providers, different to the PCEHR, and that’s the exciting future. I think other products will emerge, which of course doesn’t mean that we shouldn’t make the PCEHR easier to use. We should. We’ve got to make it easier.”

Tricky medicolegal cases

I asked Dr Hambleton to comment on a few real-life cases. In some instances the doctors involved contacted their indemnity insurers but unfortunately insurers were not always able to provide advice. In his comments Dr Hambleton refers to the ‘AMA guide to using the PCEHR’ which can be downloaded here.

A patient saw another doctor in the same practice who did not upload the latest information to the PCEHR, and the patient subsequently complained to their own GP.

“There is no compulsion to upload anything to the PCEHR. A patient can ask the doctor to upload something but the doctor is not required to do it. The doctor may say: ‘I’m not your nominated healthcare provider but you need to see your own doctor to get another shared health care summary uploaded’. These sort of things need to be talked about in practice protocols and discussed with the patient.”

There was a practice that accessed the PCEHR when the patient was not present, and the patient threatened to sue the practice.

“Patients do provide standing consent for access to their records by registered healthcare providers, so they can assist with their healthcare.”

“I think we have to talk to the AMA or the indemnity providers, but accessing the PCEHR for reasons other than the patient’s healthcare probably is not appropriate access.”

One patient demanded that the GP did not mention essential information available in the PCEHR for a report to an insurance company. The GP was unsure what to do.

“That’s very clear. If you have to write a medicolegal report it would not be appropriate to access the PCEHR, as it’s the patient’s record. If you’re writing a medicolegal report doctors can only access their own records, unless the patient has given permission to access their PCEHR. Practices need to think about protocols that describe who accesses the PCEHR and why, and have systems in place to make sure this happens.”

Misleading, missing or incorrect information causes mistakes or harm. Many doctors are unsure how they can assess if information available in the PCEHR is reliable or not.

“I think this is a really important comment as well. You can’t assume that any information in the PCEHR is absolutely accurate. If you are using that information you often have the patient in front of you so when you are taking a history, check if the information is accurate or not. No information is ever going to be complete and we shouldn’t expect that the PCEHR contains complete information.”

“Patients have the right to say, for example, ‘please don’t upload the fact that I had a termination’. Patients should understand that we don’t have to use the PCEHR and if we do, it should be weighed up like any other object of information we get.”

By looking at the PCEHR billing information providers can find out where patients have been, eg other doctors, even if a patient has asked the other doctor not to upload anything to the PCEHR. Are we supposed to have access to this information?

“Well, supposed to and allowed to are two different things. When patients consent to the PCEHR use, they are basically providing standing consent for access to the information that’s there. They have given consent but they also need to understand what consent means.”

“Patients have a lot of control: You can shut it down to one doctor or you can shut it down to only the doctors you give the access code to, and patients can switch the controls on and off.”

Some doctors are concerned that information they upload may be deemed not 100% accurate, in which case they would be in breach of the PCEHR Participation Contract.

“We are trying to provide the best available data. We will be judged by the standard of what a colleague reasonably would have done in the same circumstances. The intention of a shared health summary is to provide the next practitioner with a guide to manage the patient. If you think about it: there is not much difference between uploading a health summary to the PCEHR and writing a referral to a colleague using that exact information.”

“It is part of good medical practice to continually review the information that’s there, and for example delete previously prescribed antibiotics from the current medication list, and look over the past medical history we’re providing to other doctors to see if it is still relevant and useful to the patient’s medical care. It is certainly true that if you upload reams of information you may confuse the next provider.”

Rebooting the PCEHR: Opt-out and a new name are not enough

Health Minister Sussan Ley has announced that “the Abbott Government will deliver a rebooted personalised myHealth Record system for patients and doctors that will trial an opt-out, rather than opt-in, option as part of a $485 million budget rescue package (…).”

I like the word ‘rebooted’, as it implies a fresh start and that is certainly what the Australian e-health records system needs. ‘MyHealth record’ sounds better than PCEHR too. But many questions remain, including the most important one: will clinicians use the renamed system once it’s opt-out instead of opt-in?

The legal stuff

Clinicians have concerns that have not yet been addressed.

For example, at the moment the information in the PCEHR may be used by the Government for data mining, law enforcement purposes and ‘other purposes authorised by law’, for up to 130 years, even after a patient or provider has opted out.

When healthcare organisations or practices cancel the PCEHR participation agreement, seven of the fourteen clauses survive termination, including liability of providers.

Other concerns are that the Minister of Health may make or change PCEHR rules without legislation and the Department of Health can change the participation agreement at any time without the need for input from doctors or patients.

Improvements

If the Health Minister is serious about engaging clinicians, here are some of the issues that must be resolved:

  • The purpose of the PCEHR (myHealth Record) must be clear
  • The legal framework should be reviewed, and any changes must be agreed upon by consumers and clinicians
  • If consumers want to opt out at any stage, they should have the option to have their data removed from the system
  • If providers opt out at any stage, their liability should end as well.

And that’s just the beginning. Here’s to hoping that the $485 million will be spent wisely.

7 simple strategies to avoid eHealth fiascos

In healthcare we’re often confronted with poor quality software. Bugs and security issues are common, and the design is usually not intuitive. I spoke to Frank (not his real name), an insider in the health IT industry. Frank gives us an interesting look behind the scene and seven strategies for developing or implementing new software.

“Any industry can be a target for poor software,” says Frank, “but healthcare certainly has its fair share. Believe it or not, medical software is unregulated. Medical software that runs on a computer, mobile phone or tablet does not fit the definition of a medical device in section 41BD of the Therapeutic Goods Act 1989, as they were not intended by the manufacturer to be used for therapeutic purposes.”

“How many software developers have clinical employees? Do these employees have input into design or are they there to sell the dream?

“There is a serious gap between software design and the real-world application. Often software developers do not fully understand what is actually required by the healthcare industry to support the services that they provide.”

“Far too often, developers over-promise and under-deliver. What software can do often does not live up the expectations of the customer. How many software developers have clinical employees? Do these employees have input into design or are they there to sell the dream?”

Causes of poor quality

Some argue that developers should test their product better before it can be used in patient care. Is this an issue?

Frank: “Quality must be incorporated into the entire software development life cycle, from inception through implementation and this is not always happening.”

“A lot of the actual coding occurs overseas, in countries like India, where the employment costs are much lower. Code may be written cheaply and quickly overseas but it isn’t necessarily quality code.”

“Testing is often an after thought and done quickly due to time constraints

“Testing is often an afterthought and done quickly due to time constraints. The most crucial functionality usually gets tested but bugs can still slip though.”

“On the other hand, sometimes the client is not specific about their requirements. This could be a result of not engaging the organisation to understand what requirements need to be met. How often are clinical and other front line staff asked what they need before software arrives?”

The PCEHR 

Talking about client requirements: Let’s look at the Australian national E-health records database, the PCEHR. The Government wants to use the data and eventually save money (even though so far they have wasted millions of dollars on the project). Consumers want full control of the data, and doctors need a reliable, safe, secure and easy-to-use tool. Is it possible to develop a national product that ticks all these boxes?

Frank: “Highly unlikely. There are too many competing interests and egos with those that have been involved. In the early days, NEHTA was an interesting organisation to observe. It was obvious that they didn’t understand the complexity of system interoperability or consumer expectations on how information is to be shared and stored.”

“Fear, uncertainty, and doubt also play a part in the slow uptake of the PCEHR

“The reality is that software used in healthcare is effectively a closed shop, and it’s difficult for different systems to be integrated. Once you’ve bought a solution from one vendor, it’s incredibly difficult – but not impossible – to walk away from it.”

“Also in recent years, there has been a seismic shift in patient expectations overseas and we’re starting to see the rise of patient advocates and patient hackers. These are savvy people who aren’t going to sit back and be a passenger in their personal health journey.”

“Fear, uncertainty, and doubt play a part in the slow uptake of the PCEHR. Some providers don’t want patients to be able to access reports on the PCEHR, others are concerned that patients may choose to make some information not sharable or viewable which may compromise care. I think the truth lies somewhere in between.”

7 tips to avoid fiascos

I asked Frank what doctors, healthcare managers and business owners can do to avoid disappointments. Here’s his list of 7 tips:

  1. Be as clear as possible about your expectations and needs. Make sure you discuss the features you’re looking for and categorise them: absolutely essential, must have, good to have, nice to have, can live without. Ask how many features the software developer can provide in your first 3 categories.
  2. Make sure that the software vendor understands your requirements. Get them to provide their understanding in writing so that you can see that they’ve understood.
  3. Does the organisation hold certification for both ISO 9001 (Quality Management Systems) and ISO 27001 (Information Security Management) across all business units?
  4. Find out where the software is being developed and supported from.
  5. What is the quality like? Is it secure?
  6. Don’t pay anything to a software developer before you are sure what you’ve been given is fit for purpose and what you asked for.
  7. What contingencies are in place if the software fails to deliver as promised?

The Australian PCEHR: Success or failure?

Where are we at with the PCEHR? I asked four leaders in the field about their thoughts: Has it been a success or a failure? Can it still be improved and if so, how?

Dr Frank Jones, President of the Royal Australian College of General Practitioners: “The concept was always good, but it failed to engage with front line medical professionals and was hijacked by lawyers. I am also really unhappy with the government’s plan to upload results if not viewed by the requesting doctor after seven days – a disastrous situation!”

“The other thing that is never talked about and that people outside GP-land are unaware of, is that GPs can already access their practice patients’ notes, anywhere, anytime. GPs leading the way again – in many ways this has diminished the value of a PCEHR at a front line GP level.”

“Lets get the basics right first: Initially we need the information such as active relevant medical issues, allergies and OTD medications.”

In its present form a failure

Dr Brian Morton, Chair of the AMA Council of General Practice: “In its present form as a GP I would have to say it’s a failure. There is no recognition nor remuneration for GPs to spend the time to prepare and submit the data which must be done with the patient present. Professional clinical input to the design process has not been given the status needed to make PCEHR workable and relevant to medical practice.”

“Privacy and consumer political correctness have over-ridden safe principles of health care. The very poor uptake of the PCEHR is evidence of this. If we are to reap the benefits then recognition of the cost of data entry needs to be made.”

“Remove and prevent data which is not clinically relevant for care, for example Medicare billing data, as medical assumptions cannot be safely made based on a billing event. Identify clearly in the record that data has been removed or data hidden; the ability to over-ride the control of this is inadequate for safe care. Start the use of PCEHR with small and focused data entry such as active medical history.”

“Make a Medicare item number for the initial entry of data and an item for review yearly by the patient’s usual GP. Enable the functionality of automatic loading of diagnostic imaging & pathology data to the PCEHR when it is received and reviewed by the requesting provider. For example in our software: when it is transferred from inbox to patient record.”

A clear disaster

E-health blogger Dr David More says: “It is a clear disaster as it has failed to be utilised by, and successfully engage with, either clinicians or patients to any significant degree after what is over two years since initial implementation.”

“It should simply be abandoned and a new eHealth Strategy based on serving the needs of clinicians in information sharing and use developed. Patient engagement should be at the level of providing useful e-Health services to such as e-mail, repeats, referrals, results and record access via local practitioners.”

Effectively dead

Dr David Glance, Director Centre for Software Practice, University of Western Australia: “I would say that the PCEHR is effectively dead – there is some interesting commentary here. The liberal government has not killed it but they haven’t supported it actively either. Nor have they put forward any other strategy. So given the financial climate we are in now, I don’t expect that to change.”

“I fundamentally believe that Australia has a basic structural issue when it comes to implementing central strategies around eHealth. We are still lagging in electronic record adoption in our hospitals and public health services and to a lesser extent within the specialist community. Until that changes, any shared electronic health record will always have gaps and be less than useful.”

“Clearly NEHTA needs to be disbanded and something else put in its place. It was self-serving, bureaucratic and pretty hopeless when it came down to it.”

“With regard to opt-in/opt-out, I would say that opt-out is always a better option with a far easier access mechanism than was implemented for the PCEHR. But given how awful the implementation was, the point was moot. Talking of the implementation, given what we know about user interface, you would have thought that the interface to the PCEHR could have been a lot better than it was.”

The PCEHR: Moving forward

I can confirm that the Government is not going to build a massive data repository. We don’t believe it would deliver any additional benefits to clinicians or patients – and it creates unnecessary risks (~Nicola Roxon)

I’ve studied the PCEHR but I’m still not sure what the government has built and for what purposes. I was always under the impression that the PCEHR was designed to assist clinicians to improve patient care through better data flow. But this may not be the case.

The recent resignation of NEHTA’s top National Clinical Leads is an ominous sign. If the Department of Health does not start sharing ownership of the PCEHR soon and improve governance of the system, the PCEHR will fail. Here’s a quick rundown of the issues and how to move forward.

Legal issues

A first glance at the PCEHR Act 2012 seems to confirm that the PCEHR is built with clinicians in mind, as its four purposes are clinical in nature:

  • To help overcome fragmentation of health information
  • To improve the availability and quality of health information
  • To reduce the occurrence of adverse medical events and the duplication of treatment
  • To improve the coordination and quality of healthcare provided to consumers by different healthcare providers

So far so good. But the Act is 93 pages long and I could find at least five other ‘non-official’ purposes of the PCEHR spread out throughout the Act:

  • Law enforcement purposes
  • Health provider indemnity insurance cover purposes
  • Research
  • Public health purposes
  • Other purposes authorised by law

And this is where the concerns begin. These ‘non-official’ purposes are not directly related to the care doctors provide to their patients. In general, one would say that patients and clinicians have to give informed consent before their health information can be used for research or other purposes. It seems informed consent is missing here.

Contractual flaws

Combine this with certain clauses in the one-sided PCEHR participation agreement and you’ll forgive me for thinking that the government, contrary to Roxon’s reassuring words, has built a massive data repository:  Once clinicians sign the agreement, they grant the Department of Health and Ageing a perpetual, irrevocable, royalty-free and license-fee free, worldwide, non-exclusive license (including a right to sub-license) to use all material they have uploaded to the PCEHR.

Those who think that you can always opt out are mistaken. Even if health care organisations or practices cancel the participation agreement, seven of the fourteen clauses survive termination, including clauses regarding liability. It is good to know that the government will continue to use the information after cancellation by a clinician or consumer for up to 130 years.

Another concern is the fact that the Minister may make or change PCEHR rules without legislation, and the Department of Health can change the participation agreement at any time without the need for input from clinicians. We thought the After-Hours and PIP contracts by Medicare Locals were a disaster, but this agreement is possibly worse.

Other problems

By now it is obvious that Clinical Leads and professional organisations have not been involved in many important decisions. There is a range of other issues, which I won’t discuss here in detail, including technical software glitches and the absence of MBS item numbers. Under the PCEHR Act 2012, all clinicians are appear to be seen as employees, which could be a problem as many doctors may be employed as contractors for various reasons.

Moving forward

If the PCEHR can be used for data mining, legal purposes, insurance purposes etc, then that is fine, but, I would strongly advise the profession to stay clear from it. If however we agree, that the PCEHR is a clinical tool, then clinicians must be involved.

What we need first of all is an open, well-informed discussion about the purposes of the PCEHR. What are consumers and clinicians exactly saying yes to when they sign up? A proper, transparent, independent governance structure with specific executive authority should be formed. This PCEHR Board should include members from professional and consumer organisations and act as a watchdog over the PCEHR. Any changes to the rules require a consultative process with professional bodies including AMA and RACGP before the Board can sign off. The current PCEHR Advisory Committee and Council are not fulfilling these criteria at the moment.

Consumers should know exactly what happens with their data after they have visited a health care professional and who has access to their information. The purposes of the PCEHR must be clear and agreed upon by all stakeholders. Clinicians own the rights of the data they create and upload, there is no need to grant the government a perpetual irrevocable license to use this data.

The PCEHR Act 2012 and the participation contract must both be reviewed and made 100% acceptable to clinicians and 100% opt-out must be possible for clinicians and consumers at all times.

This will take time, but if we don’t start now there is no hope for the PCEHR.

This article has been published in Medicus, the journal of the AMA(WA)

How to save the PCEHR

The resignation of NEHTA’s top National Clinical Leads in August 2013 was the final straw for the PCEHR. I have said it before and I will say it again: if clinicians are not on board the PCEHR will fail. There are some big decisions to make by the relevant authorities if they want to save the project, and making these decisions without clinical advice is impossible.

The PCEHR Act 2012 states that the data in the PCEHR can be used for law enforcement purposes, indemnity insurance purposes for health care providers, research, public health purposes and ‘other purposes authorised by law’. This is far from reassuring. There are many grey areas and unanswered questions. There are too many agendas. The PCEHR should first be a useful clinical tool to improve patient care.

What we need is an open, well-informed discussion about the purposes of the PCEHR. What are consumers and clinicians exactly saying yes to when they sign up?

Dr Mukesh Haikerwal
Two of NEHTA’s Top National Clinical Leads: Dr Mukesh Haikerwal and Dr Nathan Pinskier in Geraldton (August 2013). Photo: Dr Ian Taylor

Consumers must know exactly what happens with their data after they have visited the doctor or the hospital. We need to agree on secondary use of the data and informed consent by clinicians and consumers is a basic requirement here. The PCEHR Act 2012 and the participation contract should both be reviewed and made 100% acceptable to consumers and clinicians.

Most of all we need genuine stakeholder engagement. This is a big challenge but certainly not impossible. Let’s hope common sense prevails.

NEHTA visit: not exactly Khrushchev vs Kennedy

My email inbox was overflowing, there were text messages wishing me good luck, journos calling and a press photographer was rocking up at the practice. On Twitter NEHTA’s visit had been dubbed ‘Khrushchev vs Kennedy’, others said that Geraldton was like the little Astrix & Obelix village, resisting the mighty Roman legions of Julius Caesar with the druid Getafix’s magic potions. But the analogies turned out to be wrong (in a good way)…

Dr Mukesh Haikerwal and Dr Nathan Pinskier, the two prominent clinical leads working with NEHTA to get the PCEHR off the ground, had decided it was time to visit us in the west. Also present at the Meeting was AMA(WA) rep Michael Prendergast, one of our practice partners Dr Elly Slootmans, our CEO Richard Sykes and our operations manager Louise – who has spent about 100 hours earlier this year to get the practice PCEHR-ready before we realised that the risks of signing up would be too high at this stage for the business and the doctors.

Dr Mukesh Haikerwal
Dr Mukesh Haikerwal

The good

Mukesh, or ‘Mr eHealth’ as some are calling him, gave a persuasive presentation about the PCEHR, including the challenges ahead. His team is working on an interesting program called CUP (Clinical Utilities Program) to iron out the problems clinicians are facing when getting started or working with the national eHealth record system.

Mukesh and Nathan made a strong case for the PCEHR, including potential benefits such as electronic referrals, discharge summaries, ePrescribing, encrypted messaging etc. They seemed very aware of the issues and are putting in a lot of effort to fix them so the PCEHR eventually becomes a tool that makes our lives easier.

Concerns

After the presentation we had a good debate about some concerns, such as the legal framework of the PCEHR and the governance issues. Interestingly, many of the concerns are not technological but, as our CEO Richard explained, if we don’t resolve them, practices will find it difficult to sign up no matter how good the PCEHR software will be.

NEHTA visit
Michael Prendergast (AMA), Dr Nathan Pinskier (NEHTA), Richard Sykes (our practice CEO)

We talked long and hard about the PCEHR participation agreement and why this document is the reason many health care organisations will not sign up. Michael Prendergast explained the pitfalls of signing these kinds of contracts without legal advice.

Other topics we discussed were the (harsh) civil penalties related to the PCEHR, the IP data rights problem, and secondary use of data in the system.

We know about the benefits of the PCEHR for patient care, and indeed there are many, but what has been missing is a proper debate about the other ways the data could be used; the PCEHR Act 2012 mentions eg ‘law enforcement purposes’, ‘other purposes authorised by law’, and research.

The way forward

I was very pleased to see that Mukesh and Nathan acknowledged these problems and understood that we – and many other clinicans – cannot go ahead before this has been sorted out. Michael was very helpful and will take the issues back to the AMA.

It was a pleasure to talk to these tech heads and it once again became clear to me that this is a journey that will take many years. For the first time I saw some light at the end of the tunnel. Khrushchev vs Kennedy wasn’t the right analogy because our interests are not opposed, but I’d settle for ‘Roosevelt & Churchill’. Modesty is my best quality (~ Jack Benny). Mukesh and Nathan, thanks for listening.

NEHTA is coming to town

“Be a yardstick of quality” ~ Steve Jobs.

First of all, many thanks to the GPs, registrars, practice managers, journos and eHealth-specialists who made suggestions how to move the eHealth-records system forward.

The original comments can be found here. It’s an excellent read and summarises the sticky PCEHR-issues from a clinician point of view.

On Friday afternoon I received a phone call from NEHTA (National E-Health Transition Authority). Their clinical leads are coming to Geraldton to discuss the PCEHR. Our team of doctors and managers is getting ready. We have invited the AMA, and they’re flying in to Geraldton as well.

It will be good to hear first-hand why it is so hard to make the system more acceptable to clinicians – and for our clinical team to give feedback. But the main question is: will NEHTA and the Department of Health go back to the drawing board and change what needs to be changed to get clinicians on board?

It’s late, but hopefully not too late to make the PCEHR work for everybody. If there’s anything you want us to bring up (apart from the wish list mentioned above), feel free to leave a comment below and we’ll pass it on.

Will more money fix the national health record? What’s on your wish list?

According to Pulse+IT magazine NEHTA wants to make their e-Health records system (PCEHR) more useful and usable for clinicians and consumers. A steering committee chaired by GP Dr Mukesh Haikerwal will meet next week for the first time.

When I expressed my enthusiasm on LinkedIn, the following two spot-on responses made me smile:

Agree Edwin lets hope. However from the look of the makeup of the steering committee it does not look like there will be much input from regular GPs and is mostly in house between NEHTA and DoHa.

Why didn’t NEHTA do this at the scoping stage (before a line of code was cut). Now they are trying to do this retroactively and hope that it works…. Nothing short of amazing….

My wish list

Minister for health Tanya Plibersek has announced yet more money today ($8M): pathology and diagnostic imaging will be stored in the PCEHR.

How to improve the uptake of the PCEHR by clinicians? I will send in my wishlist. Here it is:

  1. A public list should be made available of all organisations with access to clinical patient information
  2. Government and affiliated organisations are not allowed to use any uploaded clinical data for e.g. insurance purposes, audits, police/immigration/background screening etc. This needs to be spelled out in the participation contract
  3. Data mining and scientific research can only be performed after doctor and patient have given consent. This needs to be spelled out in the participation contract
  4. Remove the dreaded IP clause from the participation contract that states that all information can be used by the government world-wide, perpetually etc
  5. When health care organisations or individual clinicians no longer want to take part they must be able to remove all their uploaded clinical data from the database
  6. Ensure and facilitate that clinicians are not exposed to higher medicolwegal risks when participating
  7. Registration for the PCEHR as well as cancellation should be quick and easy
  8. Ensure a 24/7 knowledgeable and custom-oriented help desk with minimal waiting times
  9. Send out a quarterly newsletter to all participating clinicians to keep them up-to-date with PCEHR and NEHTA developments
  10. Cherish the clinical steering committee, make sure it’s involved at all times, and ask for lots and lots of feedback from clinicians!

What’s on your wish list? Leave a comment below and I’ll send it to the steering committee.