Now that over ninety per cent of Australians has a My Health Record, we need to start using it. That also means becoming familiar with the dashboard and settings. Most people are not aware that they can control who sees what information in their record.
For example, you have the option to switch off secondary use of data. Secondary use is when third parties use your health information for purposes not directly related to your care.
This includes public health policy development and research – but also many other purposes. If you want to know more, read my blog post about this topic.
When a new MyHR record is created, your data will automatically be shared for other purposes. If you do not want this, you need to click the ‘do not participate’ button.
Unfortunately, this button is not available under the ‘privacy & access’ tab where it should be so it may be hard to find. Look for the button at the bottom of the ‘profile & settings’ tab (see screenshot below).
It is your choice to share or not share your data. There is also a helpful video available with instructions on how to control settings for secondary use of data.
Last week, at the final meeting of the My Health Record Expansion Program steering Group, we spoke about trust. Or better, the lack of trust people have in big databases, governments in general and many other institutions.
This global trend is described by psychologist professor Barry Schwartz, who says:
“(…) the disenchantment we experience as recipients of services is often matched by the dissatisfaction of those who provide them. Most doctors want to practice medicine as it should be practised. But they feel helpless faced with the challenge of balancing the needs and desires of patients with the practical demands of hassling with insurance companies, earning enough to pay malpractice premiums, and squeezing patients into seven-minute visits – all the while keeping up with the latest developments in their fields.
Schwartz says that we seem to respond to any problem with the same answer of sticks and carrots. There is a widespread belief that more and better rules and incentives will solve our woes. There is one issue. Rules and incentives deprive us of the opportunity to do the right thing. They undermine empathy, creativity and the will to figure out what moral right means.
The My Health record offers great opportunities for healthcare in Australia. However, even though 90.1% of Australians now have access to the My Health Record, this cannot be the end of the line. A system that is responsive, has means to listen to users and learn from errors, mistakes and imperfections, is key to an effective and trustworthy digital health solution into the future.
Kindness, care and empathy are an essential part of my job – and everyone else’s. But it’s unlikely that this will ever be translated into key performance indicators or expressed in My Health Record upload percentages, practice incentive payments or MBS fees.
People are inspired by great examples, not by incentives. Above all, most people want to do the right thing. Trust may be a rare commodity these days but it remains an essential ingredient of effective healthcare delivery. It’s common sense, really.
The end of the My Health Record opt-out period is in sight. Unless the government decides otherwise, next month the vast majority of Australians will have a digital national shared health record. What’s next?
A while ago I saw a patient who was passing through my town, on her way home from Cairns to Sydney. She had been seen at the emergency department in Cairns and was told to visit a GP for follow-up. She had no hospital letter or medical records but with a few clicks I was able to get access to the hospital discharge summary through the My Health Record, which included results of blood tests, ECG and chest x-ray, and I could see what medications were prescribed.
This is a rare example of the benefits of the MyHR; once the system will be used at a larger scale this could become an everyday reality.
The Australian Digital Health Agency (ADHA) says that about 1.14M Australians have opted out and apparently the opt-out rate is slowing down. At the same time others are signing up and there is an expectation, based on the opt-out trials, that many of those who opted out will eventually opt back in.
The Australian My Health Record is a compromise between a consumer record and a clinical record. This means that there will always be people in both camps who are not completely satisfied. Despite everything we’ve come a long way.
Work in progress
The My Health Record, currently in version 9.4.2, continues to evolve. Looking back over the years progress has been slow but significant.
For example, the software is far less clunky these days; accessing a record or preparing and uploading a shared health summary can now be done within seconds; we got rid of the dreadful participation contracts; there is a secondary use of data framework and users can choose to opt-out of secondary use of their data.
It is expected that more pathology and imaging providers will come on board next year and the legal framework will be further adjusted to improve privacy of Australians, including complete deletion of data if people decide they don’t want a record anymore.
According to ADHA over 87% of Australians know about the record and more than 85% of general practice is registered.
It is likely though that this awareness is rudimentary despite hundreds of engagement activities by the agency and Primary Health Networks (PHNs). Most Australians will not be aware that they have control over who-can-access-what in their records and how to change the privacy settings.
The RACGP has held many PHN-based peer-to-peer workshops across the country as well as webinars for general practitioners and staff, and around 2000 people attended – which is a lot but probably not enough. Most non-GP specialists are not yet on board.
Then there are still the concerns about for example privacy, workflow and accuracy, many of which are summarised in this year’s senate inquiry report. It appears there is still work to do.
The next stage
The agency has started preparing for the ‘post opt-out period’. As it stands around mid December empty shell records will be created, and activated once accessed by providers or consumers.
ADHA says the aims of the next stage of the consumer campaign will be maintaining awareness, taking control of the My Health Record and encouraging consumers to discuss the MyHR with providers.
The provider campaign will focus on the expected benefits including improved efficiency, such as less search-time, and better health outcomes – although skeptics will question the latter claim by the agency.
There will also be a focus on getting specialists on board, aged care access, improved family safety and child protection and education for vulnerable consumer groups.
Meanwhile ADHA has released an international review of digital health record systems. The findings show that the Australian MyHR empowers consumers to access and personally control their information, including what’s in it and who can see it.
ADHA emphasised that, although many countries have laws that allow users to view their health information, only Australia and a limited number of other countries allow citizens to control who sees their information and request corrections to their own health data.
The MyHR PR machine is in full swing. It will be interesting to see what the response to the senate inquiry will be and what happens next year. I hope the momentum of recent times will continue.
What needs to change?
From a usability point of view the wow-factor is still missing and although that’s nothing new in healthcare, some work in this area would go down well.
For example, it would improve workflow and safety if doctors could download MyHR information not just as PDF but import new medications straight into a local medication list.
The secondary use of data framework is fairly broad, and could be tightened up a bit further. Many have commented that the messaging around the MyHR should be less promotional and more about benefits versus limitations – but I’m not holding my breath here.
What change do you want to see?
Details have been changed in the case above to ensure patient confidentiality.
In 2019, the Department of Health, via its practice incentive scheme, will not only start setting the key performance indicators of general practice but also further tighten its grip on practice data. It is not unlikely that the Department’s strategy will create the same issues the National Health Service is currently encountering: loss of patient-centeredness of care, unreasonable KPIs and low doctor morale.
The redesign of the Practice Incentive Program (PIP) has been in the cards for a while. The introduction of a new quality improvement (QI) payment system was deferred for 12 months in May 2018 because of concerns that it was not fit for purpose.
Central role of PHNs
If it goes ahead in May 2019, the impact of the new scheme will be significant. The big change will likely be that Primary Health Networks (PHNs) become exclusive “QI providers” for general practice. This means that they will extract, analyse and store practice data and present GPs with benchmark reports. Many PHNs have already started collecting data in anticipation of the changes.
To be eligible for quality improvement incentive payments, practices will have to demonstrate to PHNs that their performance is on par with the Department’s KPIs. Although analysis and benchmarking of clinical data are becoming increasingly important to improve patient care, there are many issues with the proposed PIP overhaul.
Initially, there was talk about more organisations becoming QI providers, such as the Royal Australian College of General Practitioners (RACGP) and the Improvement Foundation, but, according to Medical Observer, it looks like there will be no profession-led alternative to the PHN model and, as a result, practices will not be given a choice of QI providers.
General practice is at risk of gradually losing control over its quality improvement processes, which will no doubt leave many grassroots GPs dismayed.
The main issue with the scheme is related to professional buy-in. The Department of Health has gone through the usual process of consulting the profession, but it has always been clear that the PIP redesign was going to occur regardless of the opinion of GP groups.
The Department may claim in its communications that the KPIs are supported by the various professional bodies, but the level of engagement, trust and satisfaction with the new QI system will be low for various reasons.
First, this is an example of a top-down government solution, largely designed by the Department of Health. As we have seen with the My Health Record and Health Care Homes, this approach usually creates just as many problems as it is trying to fix.
Similarly, there has been a lack of engagement with the e-health PIP (ePIP) scheme, which requires practices to upload shared health summaries to the My Health Record to remain eligible for incentive payments or ePIP. This may have given the Department a countable number of uploads, but there is no evidence to suggest that it has improved meaningful use of the My Health Record or quality of care in general practice.
In the PIP redesign process, only payments to practices have survived. For example, the aged care incentive payment to GPs providing care to patients in residential aged care facilities will be scrapped. This incentive is worth $3000–$5000 per doctor. Many have argued that it is incomprehensible that funding benefitting aged care is removed at a time when residential aged care facilities need more support to provide the medical care required.
By stopping these service payments to individual doctors, the incentives will be one step further removed from those who are responsible for the actual quality improvement activities. Again, this does not inspire confidence in the Department’s new QI system.
Measuring performance against KPIs in combination with performance payments will almost certainly create new problems. Quality indicators used by governments around the world are often easy to measure isolated parameters that have limited valuefor complex systems such as general practice.
The evidence to support financial incentives is weak, and the British Quality and Outcomes Framework (QOF) pay-for-performance system has illustrated what can go wrong: QOF has not improved care but did result in the loss of the patient-centredness of care and has created a significant decrease in doctor morale.
No funding priority
The new QI PIP will be subsidised by a shift of funding from other PIP and SIP incentives — which has been labeled as “robbing Peter to pay Paul” by the Australian Medical Association. In 2016, $21 million were removed from the PIP budget to partially fund the Health Care Home trials. The last budget announcements made it clear that there will be no increase in PIP funding in the near future. The PIP scheme, introduced in the 1990s, has never been indexed.
The Department of Health has not yet provided clarity on what the PIP scheme will look like beyond May 2019. This lack of transparency about long term planning creates uncertainty for practices. Although the expectations will start off low, it is to be expected that the Department will adjust the KPIs upwards over time, wanting more for less.
One of the PIP eligibility criteria for practices is accreditation against the RACGP’s Standards for general practices, and it will be interesting to see if upcoming changes to the PIP scheme will affect the percentage of practices that take the effort to go through the accreditation process.
Finally, general practice is not only facing loss of control of quality improvement but is also about to miss out on an opportunity to become custodians of its clinical data. Although the QI PIP data will be extracted from GP practices, it will likely be managed and controlled by PHNs and other government agencies, such as the Australian Institute of Health and Welfare.
When the government defunded the Bettering the Evaluation and Care of Health (BEACH) study in 2016, general practice lost its most important longitudinal source of data. It doesn’t take much imagination to figure out what will happen with the QI PIP data when, in a future reform cycle, PHNs or other government agencies involved are subject to funding cuts or cease to exist altogether.
The Department of Health’s underlying thinking seems to be that the responsibility for quality and data should be taken away from the profession, even though the government’s own data governance practices don’t always inspire confidence.
The department should have given professional organisations the responsibility to execute a mutually agreed strategy, acceptable to all parties, including custodianship of data for quality improvement purposes.
Our peak bodies are working hard behind the scenes to negotiate the best possible outcome. It is more important than ever for the profession to work through any differences and present a united front. The question remains, can we stem the tide of increasing departmental control or has general practice definitely moved one step closer to the NHS?
It’s often been said, the Australian My Health Record is not a finished project. It is evolving and has, indeed, lots of potential to improve and streamline patient care. Sadly, the privacy issues that have haunted the project for years still seem to be unresolved. And when it comes to secondary use of patient data, there’s more to come from a different direction.
Back in 2013 I wrote this in a blog post about the My Health Record, then called the Personally Controlled Electronic Health Record or PCEHR:
“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.”
Five years later and there are still ambiguities about when, how and for what reason law enforcement agencies and other non-medical parties can access the national My Health Record system. This should have been crystal clear by now. Here’s is what I posted in 2015:
“(…) 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. (…) The legal framework should be reviewed, and any changes must be agreed upon by consumers and clinicians.”
When asked about this issue at yesterday’s Press Club AMA president Dr Tony Bartone indicated that he is prepared to push for legislative amendments to improve the confidence of Australians in the My Health Record.
I was glad to hear this. I’m all for amendments of the My Health Record legislation but at the same time the Department of Health is on a journey to get its hands on GP patient data – and this is unlikely to change.
For example, the Department of Health is preparing a new data extraction scheme, to be introduced in May 2019. To remain eligible for practice incentive payments GP clinics have to agree that de-identified patient data will be extracted from their clinical software by, perhaps, Primary Health Networks. From there the data may flow to, possibly, the Australian Institute of Health and Welfare, the organisation responsible for the secondary use of data in the My Health Record.
If this scheme goes ahead, government organisations will begin to take over data and quality control of general practice. The argument will be that it is in the interest of the health of the nation. Perhaps it’s my well-worn tin foil hat, but I have a sneaking suspicion what I will be blogging about in the years to come.
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.”
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?
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.
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:
A public list should be made available of all organisations with access to clinical patient information
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
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
Remove the dreaded IP clause from the participation contract that states that all information can be used by the government world-wide, perpetually etc
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
Ensure and facilitate that clinicians are not exposed to higher medicolwegal risks when participating
Registration for the PCEHR as well as cancellation should be quick and easy
Ensure a 24/7 knowledgeable and custom-oriented help desk with minimal waiting times
Send out a quarterly newsletter to all participating clinicians to keep them up-to-date with PCEHR and NEHTA developments
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.