My Health Record: what’s next?

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.

Awareness?

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.

International review

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.

Has Australian general practice moved one step closer to the British NHS?

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.

Professional buy-in?

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.

Weak evidence

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.

Data extraction

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.

Professional response

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?

This article was originally published in MJA Insight.

It has begun: Australians will soon have a digital health record

By the end of the year Australians will have an online digital health record, unless they opt out of the system. The details of the move towards opt-out will be released soon.

The Australian Digital Health Agency (ADHA) is ramping up its activities to prepare for the change to opt-out. The large-scale operation will involve extensive stakeholder engagement, a nation-wide communication and advertising campaign and increased support for consumers and clinicians.

For consumers who have not opted out at the end of the defined three-month period later this year, a My Health Record (myHR) will be created. The record will be activated when used for the first time by consumers or clinicians.

A clean slate

ADHA has opened a new call centre, launched a revamped website myhealthrecord.com.au and is now present on Twitter (@MyHealthRec).

Staff levels of the call centre – transferred from the Department of Health to ADHA – will increase from thirty to two hundred and will operate around the clock during the opt-out period.

The record will initially be empty apart from two years worth of retrospective MBS and PBS data. Consumers have the option to remove this data.

Pathology and imaging reports are uploaded into the MyHR one week after the test date. Some sensitive tests, such as HIV, may not be automatically uploaded depending on the various State or Territory legislation.

Clinicians and consumers will have the opportunity to stop the upload of results and other reports if desired. Consumers can restrict access to or remove reports from their MyHR.

No stone left unturned

No stone has been left unturned in finding ways to make Australians aware of their right to opt out: a wide scale advertising campaign will use various media including radio, social media, billboards and cinemas.

Materials such as waiting room brochures, tear-off pamphlets and reception cards will be made available to providers. Medicare will be sending out brochures to Australians. Consumer organisations have been engaged to help with awareness.

It is expected that the adoption and active use of the MyHR will vary across Australia as a result of the availability of already existing digital health solutions in various states and regions.

For example, in areas where discharge summaries are not always easily made available by hospitals, the uptake of the MyHR may be higher.

Opt-out procedure

Currently there are about twenty million Australians without a MyHR. Based on the trials it is expected that only a small percentage, about 2%, will opt-out.

It looks like the opt-out procedure will be relatively simple and can be done via an online self-service portal or by phone through the help desk. Hard copy opt-out and ‘election-to-not-be-registered’ forms will also be available through post-offices, and will be made available to hard-to-reach populations.

Although care has been taken to make sure there is no coercion not to opt-out, those who do will receive a notification that their medical information may not be accessible during emergencies. They will also be asked to give a reason after they have opted out.

The MyHR website will shortly contain information about the opt-out procedure. It is also expected that the FAQ section will be expanded to assist consumers in making a well-informed decision.

Risks and challenges

The MyHR offers clear benefits as clinicians will have increased access to information such as shared health summaries, discharge summaries, prescription and dispense records, pathology reports and diagnostic imaging reports.

However, every digital solution has its pros and cons. It has been decided that the risks associated with the MyHR will not be explicitly discussed on the website.

Behind the scenes however, risk mitigation has been one of the priorities of ADHA. This obviously includes the risk of cyber attacks and public confidence in the security of the data.

Change management

Another challenge for ADHA will be to manage expectations – before, during and after the opt-out period. The reality is that the MyHR is not a be-all and end-all, and is still on a development journey.

As a result of the troubled past of the digital record there is a large group of skeptics. It appears that so far ADHD nor the Department of Health have been able to get this group on board. The usual promotional material, touting benefits, is unlikely to change anything. A more effective approach would involve addressing the concerns, issues and perceived obstacles.

Primary Health Networks (PHNs) will assist in spreading the message. The PHNs involved in the opt-out trials reported high levels of success in engaging providers.

Other parties including the Royal Australian College of General Practitioners (RACGP) will provide peer-to-peer education, which may help to balance the message, address some of the concerns and manage expectations.

Edwin Kruys is a member of the My Health Record expansion program steering group.

The information in this blog post is intended for informational purposes only. It may not be complete and is subject to change. Please refer to offical ADHA sources for MyHR updates.

Brand new eHealth strategy off to a bad start

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

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

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

Meaningful use

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

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

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

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

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

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

Unresolved issues

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

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

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

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

A failing strategy

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

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

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

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

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

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

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

The legal stuff

Clinicians have concerns that have not yet been addressed.

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

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

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

Improvements

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

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

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