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’s not just the My Health Record we should be concerned about

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.