When his wife attended a conference in Copenhagen, Adelaide GP and RACGP board member Dr Daniel Byrne took the opportunity to find out why Denmark is one of the world leaders in the use of e-health.
One of Australia’s problems is the reliance on paper documents. For example, almost every healthcare organisation designs their own referral forms and we still fax and post a lot of documents. In Denmark a ‘one-letter solution’ was introduced years ago: one electronic form used by thousands of health organisations.
“No patient ever left the surgery with any paper,” said Dr Byrne. “It seemed very well organised with a great e-health network. No faxes were used as everything is connected via secure networks – prescriptions, referrals, pathology and radiology ordering, even email consults.”
There are no incentives for Australian GPs to communicate with their patients by phone and email, whereas Danish GPs are paid to to take calls from patients every morning. They are also paid for e-mail communications with patients.
Dr Byrne: “The email consults are excellent. The patient has to send their email via a government secure email system. Every citizen in Denmark has a government email address – maybe similar to our MyGov system.”
“Only simple non urgent requests are done by email. I think the GP has three days to answer. The payment was around $10 per email for the GP and this seemed to work fine. If there is a bit of to and fro with a patient via email the GP asks the patient to come in for a proper consult.”
Shared medication record
National databases exist for medications and laboratory results. Dr Byrne: “The live medication list was too good to be true! Click on the medication list in any GP software or hospital system and within 2-3 seconds up pops the same real-time live medication list.”
“The GP I was with could see the prednisolone dosing schedule for a patient with polymyalgia from hospital and then just take over future prescriptions. Everyone is working off the same list. I am sure it is not perfect but a pretty good starting point compared to our nothing.”
It appears the system encourages continuity of care. After hours medical services use the same computer system as GPs and hospital discharge summaries arrive electronically at the GP surgery within two days. Scripts are sent electronically to the patient’s preferred pharmacy.
Compared to many other European countries Denmark has a high public satisfaction with the health care system.
An interesting aspect is the access patients have to the system. Via the Danish National Health Portal patients can access hospital discharge information, laboratory results, the live medication list and waiting list information.
Patients can electronically schedule GP appointments, send e-mails to their GP and renew prescriptions. They can also see who has accessed their health records.
All doctors are allowed to access the health records, but other health professionals require patient consent first. Danish law does not allow the interconnection of IT systems across sectors, such as health and taxation.
With a population of 5.6 million Denmark is one of the smaller European countries, which may make it easier to roll out e-health. The system is not perfect and there are always issues, such as interoperability.
Overall Denmark seems to be miles ahead of many other countries, including Australia where we still rely heavily on the fax machine. Dr Byrne: “In Denmark it is illegal to fax anything as the system works on a national ID number that has to be kept secure.”
This is good news. Doctors and patients are often confused about the rules regarding the collection, use and disclosure of information on a PCEHR.
An example of ambiguities includes doctors being advised not to use PCEHR data when providing third-party reports. But what happens to PCEHR information that, over time, has been incorporated in local databases? And are doctors allowed to access a PCEHR in the patient’s absence?
What’s the purpose?
This lack of clarity reflects a bigger problem — the absence of a clearly articulated and shared goal underpinning the national e-health system.
In the absence of an agreed purpose, rules and systems can become arbitrary or misguided, restrictive and lacking in consistency. Doctors, patients and policymakers first need to agree on the main purpose of the PCEHR.
Ultimately it is a tool intended to improve the provision of care: patients disclose their personal data to doctors and, in return, receive more effective and personalised care. I would be happy if the data were 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 PCEHR system operator is currently authorised to collect information in individual PCEHRs for law enforcement, health provider indemnity insurance cover, research and public health purposes, and as required or authorised by law.
This should be more transparent with a better explanation of what it means for both patients and clinicians.
Patients should also understand the pros and cons of setting advanced access controls, especially now an opt-out system is on the cards. Adequate support will be required for specific groups including the elderly, people with a disability or mental illness, and some 14–17-year-olds.
The right to be forgotten
At the moment, PCEHR data are required to be held for up to 130 years. An interesting concept to consider is the “right to be forgotten”, which has been introduced in the European Union Court of Justice to give people the right to remove data from search engines under specific circumstances.
This concept is applicable to e-health. Patients, for example those with a mental health diagnosis early in life, may want to have part or all of their PCEHR record erased at some point (not just deactivated) to avoid stigmatisation or other repercussions — rather like the expunging of juvenile criminal records to give young people a fresh start.
Liabilities & incentives
Removing the need for participation agreements seems like a good idea. The Department of Health proposes that the liability provisions in the agreements be disposed of, rather than transferred to the legislation.
It is unclear what this would mean for the liability of doctors and health care organisations.
It seems new incentives will be paid to doctors who upload records to the PCEHR on behalf of patients with care plans. Although this will be welcomed by most doctors, it excludes other patients who don’t have a care plan but who would also benefit from a PCEHR.
Linking payments for chronic disease management to the uploading of documents is complicated. If it is introduced without other improvements to the PCEHR system, it could create more resentment among doctors and may lead to poor-quality uploads
What happens if patients do opt out of the PCEHR? Will their doctors be paid less to look after them?
And what if a patient who would benefit from a PCEHR declines to have a care plan, or the doctor provides chronic care without creating care plan documents or health assessments? In that case, there would be no incentive for the doctor to upload data to the PCEHR.
An upload incentive across the board would avoid these issues.
More criminal penalties?
The government is also considering introducing more criminal penalties, including jail terms, additional to the monetary civil penalties that already exist for data breaches. If we want to increase participation and engagement by doctors, I’m not sure that more penalties will help.
The challenge is to make e-health an integral part of health care, and align its purposes and values with usual clinical practice.
Training & education
Astronomer Carl Sagan said: “We live in a society exquisitely dependent on science and technology, in which hardly anyone knows anything about science and technology.” If e-health is to succeed we need to invest in information and communication technology skills. We must train the next generation of e-health designers, builders, managers and users to ensure our e-health system is safe and effective.
This article has previously been published in MJA Insight. Many thanks to Ms Jen Morris, Dr Karen Price and Dr Michael Tam for their valuable feedback and suggestions on the draft of this article.
There were a few interesting tech news facts this week. I thought this one was interesting: a Dutch campaign group used a drone to deliver abortion pills to Polish women, in an attempt to highlight Poland’s restrictive laws against pregnancy terminations.
There was scary news too: a private health insurer encouraged its members to use a Facebook-owned exercise app to qualify for free cinema tickets. Not surprisingly, Facebook was entitled to disclose all information shared via the app, including personal identity information, to its affiliates.
But there was also this: Telstra has launched its ReadyCare telehealth service. For those willing to pay $76, a doctor on the other end of the phone or video link is ready to care for you. No need to visit a GP or emergency department.
The telecom provider will offer the service to other parties like aged-care facilities and health insurance funds. Telstra is aiming for a $1 billion annual revenue.
Digital developments increasingly create new opportunities, challenges and risks, but we have yet to find ways to incorporate the new technologies in our existing healthcare system.
In an interview in the Weekend Australian Magazine Google Australia boss Maile Carnegie warned that the digital revolution has only just started and that Australia is not ready for the digital challenges ahead.
Carnegie said that 99% of the internet’s uses have yet to be discovered and although Australia is the 12th largest economy in the world, it ranks only 17th on the Global Innovation Index.
She said that Australia has become a world expert at risk-minimisation and rule-making. Unfortunately this seems to slow down innovation.
“We are either going to put in place the incentives and the enablers to create the next version of Australia as a best-in-class innovation country or we’re not,” she said. “And I think it’s going to be a very stark choice that we have to make as a community.”
Who’s taking the lead?
In the last ten years we have seen major progress in for example mobile technology, but my day-to-day work hasn’t changed much. Healthcare has difficulty harnessing the benefits of the digital revolution.
Is the industry leading the way and letting governments, software developers and other parties know what is required? Do we have industry-wide think tanks to prepare for the near future? Have we listened to what our patients need and expect from us in the 21st century?
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:
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:
Law enforcement purposes
Health provider indemnity insurance cover purposes
Public health purposes
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.”
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.
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.
In the ‘Blogging on Demand’ series you get to choose the topic. If you have a great idea you want the world to know about, feel free to contact me. Northern NSW GP and technophile Dr David Guest feels that one particular low-cost health-IT solution from New Zealand, called GP2GP, is worthy of more discussion and would make a big difference in Australia.
I admit it’s odd: Every time a new patient presents, the receptionist will see to it that a huge pile of paper notes ends up on my desk, often held together by paperclips or elastic bands.
I usually move the pile over to one side and look at it for a couple of days to see if the documents will disappear which, so far, hasn’t happened. Then, during a lunch break, I bite the bullet and trawl through the record, under while entering the data into the computer: allergies, medications, history, family history etc.
Important documents are scanned and shredded. When a patient at any stage decides to leave the practice, the receptionist prints the record and faxes it to the next GP. When it’s a large record she will make sure it’s held firmly together by paperclips or an elastic band before it goes to the post office in a big envelope.
Getting computers to solve this problem for us is an issue in Australia, because our IT systems don’t communicate. But in New Zealand and the UK they have found a way to transfer health records electronically. It’s called e-mail. Well, not really, but there are similarities.
Simply put, GP2GP is a software application that securely transfers an electronic health record from one practice to another, and automatically stores information in the relevant sections of a patient’s record.
Dr Guest: “Although I support the PCEHR one cannot help but feel frustrated by the slow pace of change and the limited functionality it provides. In recent times I have become much more interested in simple low-cost achievable IT solutions.”
“It would be great to emulate the UK and NZ ability to transfer medical records from one practice to another. Auto-populating medical lists, health summaries, allergies and vaccinations will save time and reduce medical errors. New Zealand has reportedly done this for less than a million dollars. Given the lack of progress in Australian health IT, it seems a no-brainer to replicate this.”
“Patients have a reasonable expectation and entitlement that information can be easily transferred to their new practice
RACGP e-health spokesperson Dr Nathan Pinskier says: “Australians legitimately change their GP and general practice for a number of reasons, for example because their GP retires, practices merge or people relocate. Approximately 10% of Australians move home each year. Patients have a reasonable expectation and entitlement that personal healthcare information held by their current general practice can be easily transferred to their new practice.”
“Transferring data via a physical medium, like discs and USBs, is problematic as they only work well between compatible systems. The PCEHR allows for the sharing of some clinical documents via a point to share environment, however this requires the patient and both the old and the new general practices to be registered with the PCEHR.”
“Furthermore the documents that may be available for transfer may not always be the information required by the new general practitioner, as documents can be restricted or removed by the consumer. The PCEHR is after all, by definition, the consumer’s personally controlled healthcare record.”
Dr Guest: “The elements enabling this transfer of data already exist in Australian electronic health records software. Most products can export their data in machine readable formats such as XML. They can also import an XML-file produced by their own software from other practices. There needs to be agreement on a standard structure for the XML-data and this is what NZ and the UK have achieved. We should use their format and then enforce it.”
The process of posting paper records and manually entering data is inefficient. Patients First, the New Zealand not-for-profit organisation responsible for introducing GP2GP, states on its website: “This results in a significant safety risk each and every time a person changes their GP.”
Indeed, when doctors or staff enter data manually, there is the potential to make mistakes.
“Having this knowledge at their fingertips will lead to improved clinical decision-making
According to Patients First, there are many benefits:
“With GP2GP, general practitioners will have detailed knowledge of their new patient’s current medication, allergies, current problems and past medical history. Having this knowledge at their fingertips will lead to improved clinical decision-making so that the right care can be provided at the right place and at the right time thus reducing the risk to patient safety during the handover of care.”
Lastly, a benefit that has been claimed is a reduction in the number of duplicate tests.
“The major issue is developing an agreed set of standards for both the content and technical requirements for point to point transfer that can be implemented by any vendor,” says Dr Pinskier. “The RACGP Optimus project has made significant progress in relation to defining the content, however there is no national program to address and fund the technical transfer work.”
Some have argued that there is no business case for software vendors to develop GP2GP in Australia. In New Zealand and the UK the project received Government funding.
The reduction in workload may not be as substantial as we would like. GP Emma Dunning pointed out in New Zealand Doctor Magazine that doctors still need to review the imported data:
“Where I used to be demoralised by the huge pile of paper notes awaiting my attention, I am now demoralised by the stream of tasks on my taskbar, in red, saying ‘GP2GP notes imported, review’. My lightbulb may never be green again!”
A 2011 pilot study from the UK found that the record transfer system was valued, but that there were issues with the quality of the records, which required significant resources to rectify. The New Zealand version also experienced teething problems.
Urgent national priority
Nevertheless, the adoption rate in the UK is 62% (2013), and in New Zealand 93% (2014) with 30,000 transferred records per month.
“I think it is excellent and it saves a lot of time
GP Dr Richard Medlicott, who is a member of several e-health task forces in New Zealand, is content: “Personally I think it is excellent and it saves a lot of time. It’s even better since we increased the file limit from 5 MB to 20 MB. I can’t see any reason you wouldn’t use it.”
According to Dr Pinskier making our systems talk to each other has become an urgent matter: “To support efficient healthcare delivery and continuity of care, we need an agreed mechanism for the safe and efficient transfer of clinical information. One would argue that this is now an urgent national priority.”
It seems GP2GP could be a cost-efficient improvement in Australian healthcare, but the question will be: who pays?
Thanks to Dr David Guest for the topic suggestion.
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?”
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:
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.
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.
Does the organisation hold certification for both ISO 9001 (Quality Management Systems) and ISO 27001 (Information Security Management) across all business units?
Find out where the software is being developed and supported from.
What is the quality like? Is it secure?
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.
What contingencies are in place if the software fails to deliver as promised?
Healthcare around the world is plagued by software problems. To give just a few examples:
Issues with the Obamacare website caused user frustration, but also security breaches. Personal information was disseminated over the internet, affecting millions of people.
Closer to home, the Australian PCEHR has difficulties getting off the ground because of concerns at various levels. Major security problems with the Australian MyGov website – which also gives access to our eHealth records – were exposed by a researcher who was able to hack into the secure part of the website.
Queensland Health has an unfortunate track record of software problems, most recently with Metavision, an intensive care software package that created medication errors.
Why is the healthcare industry prone to these software debacles?
I caught up with Australian health IT experts to get some answers. In this post I’m talking to Sydney professor Enrico Coiera, who has extensive experience in the field of health informatics and bioinformatics. He’s got interesting things to say about eHealth, the PCEHR, and Telstra’s plans to enter the healthcare market.
What’s the cause of e-health fiascos?
Coiera: “Today in Australia there is still, inexplicably, no governance system for e-health safety. No one is looking at your GP desktop system to make sure patients will not be harmed through its use.”
“Yet, look at what has been achieved in the airline industry, and then compare their safety governance processes to those that we have in healthcare IT. A functional and effective governance system needs a rapid reporting arm, and a rapid response arm.”
“If something goes wrong it must be reported, and rapidly communicated back to all other users who might be experiencing the same issue, and then quickly repaired.”
“The other thing is of course that while we are fiddling and doing nothing, clinical software is getting more complex, with more functions and more opportunities for failure, and as a result, patient harm.”
“In the past, software failures weren’t always seen as a patient safety issue. IT glitches were regarded as annoying, perhaps time-wasting.”
“It’s only in the last decade that we’ve realised that unsafe IT makes for unsafe care. And now that we know that e-health is a patient safety issue, people are not putting up with it anymore. They do want to know that their clinical systems are safe.”
Man vs machine
I often wonder if software solutions are tested thoroughly enough before they are introduced in the clinical setting, but according to professor Coiera I’m underestimating human factors as a cause for errors:
“I’m not sure that improving software testing is the only challenge with e-health safety. Having said that, in Australia there are no requirements on testing for clinical systems, so we don’t know whether or not even this basic requirement is being met by software vendors.”
“My biggest criticism of the e-health industry is that their software is often not very innovative.
“Keep in mind that there is no such thing as a safe system: While about 50% of e-health incidents are primarily technical in origin, the other 50% of incidents are caused by a human factors, for example someone selecting the wrong medication or medication dose from a drop down menu.”
“This means that to have a safe system, both our software needs to be built to appropriate standard, but also that clinicians must be trained to be safe users of the technology. Implementations of software in clinical settings also need to be carried out with an eye to risk reduction.”
“My biggest criticism of the e-health industry is that their software is often not very innovative, and not designed with human factors in mind. It is hard to comprehend how unusable some clinical systems are, with too many clicks to achieve even simple tasks, and user interfaces simply adding in new functions and becoming complex over time, rather than focusing on clarity and simplicity in design.”
“This lack of innovation is probably a function of the size of the e-health market, and the ability of vendors to lock in customers by making it hard to move from their system to others. Innovation comes from true competition, as well as customers who reward innovation.”
How do we fix the PCEHR?
Many people are calling for a rethink of the PCEHR, saying that a massive data repository is not the answer.
Coiera: “There has never been a strong case to develop a centralised national record. The main issue with the PCEHR design is that its explicit clinical purpose has never been clear.”
“GPs should have access to hospital patient data, but that can happen by logging on directly to the hospital system.
“There are actually many compelling reasons to move data around the system, using more interoperable records and networks. GPs for example should have access to hospital patient data, but that can happen by logging on directly to the hospital system, not looking at some extract of the data in a central repository.”
“Wasn’t that the whole point of the Internet, for goodness sake? Data needs to be fluid, it should move around.”
Big business vs big government
Frustrated with the government’s PCEHR, some are hoping big business will solve the problems. Telstra has announced plans to get involved in telemedicine and e-health. The question is whether this will be an improvement, as Telstra has had its fair share of software malfunctions – including at least one security breach affecting one million BigPond customers. But Coiera is positive:
“We should welcome big companies, it’s good for us. The government’s job is to protect privacy and security through regulation and law. The government should stick to what it’s good at, and leave software development to industry. Government is used to being in charge and driving change top down, whereas businesses are usually better at listening to the client.”
“I think we will be seeing that government gets out-of-the-way in e-health, while still protecting the rights of citizens via law. With the arrival of industry should come competition and innovation. The companies that listen best to what we want as clinicians and consumers will win.”
If you are using Dr Google to find information about a health problem – like most people do – you will come across unreliable information. Here are 6 warning signs that will help you stay clear from quackery sites.
Information may simply be outdated or incomplete. But sometimes it is deliberately incorrect or manipulated, for example to make you buy something. How to differentiate between the good and the bad? (I admit, this is not always easy).
#1: The site wants to sell something
If a website is trying to sell a product, the information provided may not be objective. Be careful if the site is:
Showing lots of advertisements or testimonials, difficult to distinguish from the website content
Offering a free trial, money back guarantee or special offer
Using phrases or words like: Recommended by doctors, used by professionals, scientifically proven, patented technology, or guaranteed results.
A site may not explain that its main purpose is to sell something. Stay clear if it sounds too good to be true, for example if the website is promising you a miracle or magic cure, amazing results, or a new, quick or easy way to fix your health problem.
Are links to original sources or scientific research provided? Missing or insufficient information may be a clue that a website is not reliable. Websites carrying the HON Code or HealthInsite logos are usually reliable.
#3: The website is out-of-date
Always check how old the information is. Has the website recently been updated? If the information is more than 2-3 years old it’s best to look for a different source of information – or talk to a health professional.
#4: The site has a less reliable domain
Trustworthy health websites contain the domains .gov, .org or .edu, indicating that the information comes from the government, a not for profit organisation or a university.
This doesn’t mean that other websites are always unreliable, but it’s good to find out who is sponsoring or paying for a commercial website (.com or .com.au) before relying on the information. You particularly want to know if the information favors the sponsor.
Websites written by a single person are less reliable than websites run by professional organisations. Yes, that includes this blog (I just shot myself in the foot, didn’t I?)
#5: You have landed on Wikipedia
Wikipedia scores high in search engines so it’s easy to arrive at a Wikipedia page. As much as I like Wikipedia, one study showed that it may contain errors.
#6: The site is requesting your information
Reliable health information is freely available online (at no cost), so there is no need to give a website your details, like your email address. If you must submit personal information, check what will happen with your details first.
A rule of thumb: Don’t rely on one source. Try to find other reliable websites or sources confirming a message or claim about a product or service. Ask an AHPRA-registered doctor or health professional if you’re not sure.
If you would like to know more about finding reliable health information online, have a look at this 16-minute tutorial by the US National Library of Medicine.
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.”
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 start of Doctor Amir Hannan’s career was a rocky one. In 2000 he took over the surgery from convicted murderer Doctor Harold Shipman. On their first day, Amir and his colleague found that Shipman’s children had removed all furniture, phones and computers from the practice. Equipment had to be borrowed from other surgeries.
The practice has long since been turned around into a thriving GP clinic with a strong focus on eHealth; for the past 7 years patients have had online access to their electronic health records.
Around the world there are several projects going that allow patients to get access to their records, and Amir Hannan is one of the trail blazers.
He did his medical training at Manchester University and then trained as a General Practitioner in the north-west of England. I got in contact with him after he posted a comment on my blog post about OpenNotes, and he was kind enough to talk to me about his amazing pioneer work.
Amir is passionate about the project: “I am motivated by the desire to do the very best for patients and staff by bringing out the best in all of them. Empowering them, empowers me. When they benefit, I get an immense sense of achievement. It becomes infectious and helps me to overcome any challenges I may face.”
The practice administration and clinical system he uses in his practice is called EMIS, widely used by GPs in the UK. Amir: “EMIS also provides a secure online facility for patients, called ‘Patient Access’, which allows patient access from a range of internet devices.”
What are the benefits?
Amir says the system offers many advantages:
“Benefits include a more open relationship with patients, which enables patients to feel more in control. They can book appointments online, order prescriptions online, update their contact details and access the full records if they wish. This helps patients to read what the doctor or nurse has said, see test results or letters as soon as they arrive back in the practice, check for any errors or missing data and help with completing medical and insurance forms.”
“It improves the relationship between patient and clinician, leading to a partnership of trust.
“Information buttons provide links to trusted information so that patients do not have to do a Google search. You can do all these things via smart phone, tablet or PC.”
“It improves the relationship between patient and clinician, leading to a partnership of trust. Patients use it intelligently saving their time and doctors’ time to make the system safer and more efficient.”
“Patients can send secure messages electronically, write into the surgery on paper and their comments can be added to the record or they can complete an Instant Medical History which we have recently introduced. We do not encourage email as it is not a secure means of communication and our replies could be seen by other family members which may compromise the patient’s right to confidentiality.”
“We need to do further studies to prove patients accessing their records and, most importantly, understanding them, do in fact enjoy better outcomes such as improved blood pressure control, diabetes care or reduced time off work. Anecdotally patients seem to have better compliance of treatment and we have many testimonials from patients describing their positive experiences. Such evidence may become available as more patients sign up.”
What are the risks?
Amir feels his patients are more in control of their health and care and, at least anecdotally, there seem to be some benefits. But are there any downsides?
“We take security and privacy very seriously. The software requires patients to register using their pin numbers for the service and then use passwords to get access to their records. This seems acceptable to the patients. We have not had any data breaches to date. We offer advice for patients to help them understand these issues better.”
“Very few patients ring the surgery because they do not understand something and we have not been sued for anything as a result of giving patients access to their records. In fact we are still waiting for our first complaint and that’s after offering the service for over 7 years. Currently over 2650 patients, 23% of our registered patient population, have access to their records. Records sharing is safe and does not increase litigation.”
“Every encounter afterwards can lead to patients learning more about their symptoms and how they can do more for themselves.
“It does take some time for patients to sign up for online services, and we do have an explicit consent process. Patients are asked to get their pin numbers from the receptionist, look at some of the support material which explains what records access is, and then complete an online questionnaire which confirms their understanding of the issues. Their request then has to be processed which takes about 10 minutes per patient.”
“It is a journey of discovery for patient and clinician so that every encounter afterwards can lead to patients learning more about their symptoms and how they can do more for themselves. Paradoxically, this seems to lead to a reduction in anxiety because patients, carers and family can check what has been said, see that the practice has done what it agreed to do, gain a better understanding of their health and improve their health literacy – patients worry less as a result.”
Amir’s practice offers the service for free to patients, although there is no funding in the UK to support practices to engage with their patients online. Amir: “Our implementation using the practice-based web portal has required the practice to provide its own resources. The current strategy locally has been for the market to drive innovation, which has failed completely. Funding will need to be made available to encourage innovation and enable stretched practices to invest in such tools to gain maximum benefit and to scale this.”
The UK Royal College of General Practitioners has published a guide titled ‘Enabling patients to access electronic medical records. A guide for health professionals‘. Amir recommends this to anyone who is interested in setting up a similar system.
“My hope is that one day all people in the world will be able to do this. This is the future of healthcare and it is happening now! See how others are doing it, such as in the UK: PatientView or in America: Kaiser Permanente and OpenNotes.”
“I use my twitter account to share experiences with others.
“It is not easy and it takes time, resources and effort. Build links with others and collaborate with them to share experience and knowledge. Build a practice-based web portal such as ours, which helps to engage with patients and provides a mechanism of informing, signposting, engaging and empowering patients and their carers. Engage on twitter and social media – there is a great deal of interest. I use my twitter account to share experiences with others.”
“Listen to your patients and staff. Work with them and develop a strategy and a plan. Most importantly get on and do it. Don’t procrastinate or worry about what might happen – instead think about the opportunities and consequences of enabling patients to access their records and understand them.”
Although doctors are in the top three of most trusted professions, they also have a conservative image.There is the perception that doctors are resistant to change, such as the introduction of eHealth in their practices.
Nothing could be further from the truth.
Doctors are used to change. Medicine and healthcare are areas where new developments happen on an almost daily basis.
However, just because something is new, doesn’t mean it’s better. Many doctors have learned this the hard way. That’s why we need to be convinced before we change our current practices. Not with arguments but with evidence.
It’s best to try a new idea out on a small scale. Prove that a product or service has benefits to patients and doctors – but no major disadvantages – and we will consider it.
Consumer access to electronic health records may not be far off. In the not-so-distant future people will look up their file from home or a mobile device. They will also be able to add comments to their doctor’s notes.
In its current version the Australian PCEHR allows limited access, but the US OpenNotes record system has gone a step further by inviting consumers to read all the doctor’s consultation notes.
Pulse+IT magazine reported that 18 percent of Australian doctors believes consumers should be able access their notes; 65 percent would prefer limited access and 16 percent is opposed to any access at all.
What are the pros and cons? Here are some of the often-mentioned arguments:
Improved participation and responsibility
Increased consumer’s knowledge of their health care plan
Consumers can read their notes before and after a consultation as reminder
Consumers can help health practitioners to improve the quality of the data, eg by adding comments
Consumers can better assist practitioners in making fully informed decisions
Consumers may interpret the data incorrectly creating unnecessary concerns
Increased risk of security breaches and unauthorised access
Unwanted secondary use of the data by eg insurance companies or governmental organisations
Practitioners may need to change the way they write their notes
An article in the New England Journal of Medicine reported that OpenNotes participants felt they had a better recall and understanding of their care plans. They also felt more in control. The majority of consumers taking medications reported better adherence. Interestingly, about half of the participants wanted to add comments to their doctor’s notes too.
Most of the fears of clinicians were, although understandable, ungrounded:
The majority of participants was not concerned or worried after reading what their doctors had written (many just googled medical terms and abbreviations)
Consumers did not contact their doctors more often
A minority of doctors thought OpenNotes took more time, others thought it was time-saving
According to the OpenNotes team transparent communication results in less lawsuits. I couldn’t find any information about the security risks of the system.
Overall, consumers were content: 99% percent preferred OpenNotes to continue after the first year. Doctors were positive too, see this video:
Consumers have the right to know what information is held about them, and they have the right to get access to their health records. Online access therefore seems to be a logical step to exercise these rights. Although the PCEHR allows consumers to see a summary, the consultation notes cannot be viewed. OpenNotes is about sharing all consultation (progress) notes between a consumer and his/her practitioner.
I believe there are 3 trends happening that will push this development:
The culture of sharing data online
The increasing consumer participation in health care
Evolving digital and mobile technologies
The 3 main reasons why it will not happen overnight:
An attitude change towards full access takes time
Security and privacy concerns
Lack of incentives for software developers and practitioners
Online access to electronic records (viewing and commenting) will boost transparency. It will change the interaction between consumers and practitioners and may even improve quality of care. I’d love to see more trials and experiments in this area. What do you think?
About ten years ago I did a locum in an innovative GP practice in The Netherlands. When prescribing medications, the computer system allowed me to either print the script and hand it to my patient, or send it electronically to the pharmacy. Consumers who elected the second option, were able to collect their medications at the pharmacy twenty minutes later.
I’m not sure how secure the system was, but it was easy to use, saved a lot of paper, and prevented lost scripts and medication errors.
ePrescribing in Australia
Here in Australia doctors are printing or handwriting scripts. This month however I noticed a little QR code in the top right corner after printing a script. It took me a while to figure out what it was for: Patients can scan this code with a mobile device, submit the information electronically to the pharmacy of their choice and pick the script up on a preferred day and time.
The app, developed by the Fred IT Group, is called eRx Express. It can be downloaded for free on mobile devices. It seems that the benefit for health consumers is reduced waiting time at the pharmacy – which is great, especially if people have already been waiting to see their doctor.
I also have a few reservations…
First of all, consumers have to scan and send information via their smart phones, and they still need to bring in the paper script when collecting their medicines at the pharmacy. So it involves a few more steps and we’re not yet saving trees.
Second, as always, I would like to know what happens with the data during and after scanning, transmission over the internet and on the servers of the Fred IT Group and others. Is the information sold or disclosed to third parties?
It would be good if consumer details and their prescription history would not be collected or used for other purposes. But usually, when something is free, we become the product. In other words, there is often a price to pay with regards to our personal data.
The small print
You agree that we may disclose your de-identified prescription data to selected third parties for the research and marketing purposes of those third parties.
We do not warrant (…) that any data transmissions between you and us will be secure and that any data you send us shall at all times remain secure.
We reserve the right to (…) charge for the App or service provided to you at any time and for any reason (whether stated or not).
As long as private or governmental organisations want control of our health data for other purposes than patient care, eHealth initiatives will not take off. Of course health consumers are free to use this service, but at the moment the benefits do not seem to outweigh the risks.
The General Practice Data Governance Council is “committed to profession-led governance regarding the issues of data collection activities in general practice,” in particular secondary use of patient data generated through clinical care delivery to patients.
GPs and consumers have voiced concerns with regards to secondary use of data uploaded to the PCEHR, so I thought it would be interesting to have a look at the PCEHR and see if it meets the goals of the Data Governance Council.
As outlined in an earlier post, it appears PCEHR data can be used by the government for:
Law enforcement purposes
Health provider indemnity insurance cover purposes
Public health purposes
Other purposes authorised by law
The eight goals of the General Practice Data Governance Council are in the context of secondary use of data from general practice. They are listed below, followed by my pass or fail verdict with brief comments.
1. Protect the needs and interests of all data stakeholders
FAIL – The PCEHR Act 2012 and the PCEHR participation contract increase liability for health professionals and remove control by consumers and clinicians.
2. Ensure integrity in the use of data for secondary purposes
FAIL – There is lack of information about how the data in the PCEHR is used outside the general practice setting.
3. Increase availability of data and information to support general practice and patient health outcomes
PASS – It is expected that in the future hospitals, specialists, allied health providers and others will be uploading information (this is currently only happening on a small scale). This should eventually support general practice and patient health outcomes.
4. Promote consistent approaches to management of data and data requests
FAIL – Although the process of data requests and uploading etc is consistent and clearly outlined, there is lack of information about the how the system operator (read: Department of Health) deals with the data.
5. Promote compliance with privacy legislation
PASS – It appears the PCEHR is compliant with privacy laws.
6. Provide open and transparent processes
FAIL – There is a lack of information about secondary use of PCEHR data by the government or other organisations with access to the PCEHR database.
7. Identify opportunities for secondary data use
PASS – The government has certainly been creative in identifying opportunities for secondary use. Consumers and clinicians are generally not aware of this and specific informed consent is missing.
8. Promote data quality improvement processes
FAIL – Although quality assurance and improvement processes may exist within NEHTA or the Department of Health, they have not been made public to the best of my knowledge.
Fail x5, pass x3. This may explain the lack of enthusiasm by GPs. In my opinion the uptake of the PCEHR will improve if these eight goals are met.
Feel free to agree/disagree and leave a comment below.
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.
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
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.
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.
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.
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)
It is good to see that social media and eHealth are becoming mainstream topics at national health conferences. At the recent GP Education & Training Conference in Perth (GPET13) I attended two workshops about our professional online presence.
The first one was about the benefits of social media and was attended by GP supervisors, registrars and students. The second one, sponsored by a medical defence organisation, warned about the dangers of the online world, and interestingly there were mainly GP supervisors in the room.
Before I continue I must declare that I was one of the presenters at the first workshop. But it was good to be reminded by professor Stephen Trumble about what can go wrong. His excellent presentation created a lively discussion. Here are seven random points I took home from the workshop:
Doctors should be careful when looking up patients online, eg via Google. In general this is only acceptable if doctors are acting in the interest of patients, for example when trying to find contact information in an emergency.
Privacy settings of Facebook and other social media tools may change or fail, therefore: do not trust these settings. Assume that everything posted online, even in private networks and groups, is public. I have blogged about the elevator test, which is one way to check if something is suitable before posting.
Taking pictures of patients or their body parts is fine as long as the patient has been made aware of the purpose and who will see the picture, has given consent prior to taking the picture and has been de-identified. When doctors publish the picture online, consent must be noted within the publication. If the picture is later used for other purposes, the patient must again give consent.
When doctors collect patient information on their mobile devices, eg when taking a picture with a smart phone or when using a transcription service, these devices must be protected from misuse, unauthorised access, alteration or disclosure. The simple passcode on iPhones is generally deemed insecure (but can be made more secure in the phone settings). If patient information is stored overseas on cloud systems, local security laws apply and they may not meet Australian standards.
Old smart phones, even if factory settings have been restored and the data erased, still contain information. This is of course also true for USB sticks, practice computers, photocopiers with a hard disc etc.
I have blogged about the issues with Skype in patient care. From the handout: “Skype is not recommended for telehealth consultations but has not been deemed ‘unsuitable’. There are privacy, confidentiality and quality issues and many doctors who start with Skype end up upgrading to commercial systems.”
Last but not least: email is not suitable to transfer patient information. Encrypted email is the preferred option.
It is sad that the eHealth practice incentive payments (PIP) by the government are only paid to practices taking part in the PCEHR. As a result costly software, system and security upgrades will not be a budget priority for many practices.
Online communication for education: risks, responsibilities and rewards. Workshop by Prof Stephen Trumble, Ms Nicole Harvey. GPET 13 Conference, Perth
General professionalism online – handout by MDA National
Informed consent and Telehealth – handout by MDA National
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?
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.
It is not easy to find balanced information about the PCEHR. For that reason I welcome the information prepared by the Australian Privacy Foundation. The APF has been an advocate for privacy protections, representing the public interest to governments, corporations and industry associations.
The APF has always strongly supported eHealth, but in a press release Dr Juanito Fernando said: “Neither clinicians nor the rest of the community understand the system, let alone the full implementation details.”
The APF has prepared two FAQs: one for health consumers (great for waiting areas) and one for clinicians. The government’s FAQs about the PCEHR can be found here.
Let’s hope the new information will improve awareness about the PCEHR and stimulate discussion about the many grey areas.
Dr Edwin Kruys has provided feedback on a draft version of the FAQs for clinicians by the Australian Privacy Foundation
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.
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.
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.
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.