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.

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.

A new hope for the My Health Record?

It looks like we’ve entered a new chapter in the Australian digital health story. After several rocky episodes it seems the force is with us and Australia’s digital health record system is on the road to recovery. At the same time there are challenges ahead.

When it comes to the national electronic My Health Record (formerly PCEHR) there is no shortage of scepticism among health professionals. Many have disengaged after unsuccessful encounters with earlier clunky versions of the system.

A lot of work has been done to make the interface easier to use. Accessing the system and uploading a shared health health summary has now become a fairly simple process – as it should be.

Towards opt-out in 2018

The My Health Record will get a massive boost in the middle of 2018 when the system changes to opt-out. Currently Australians have to actively sign up if they want a digital shared health record but next year every Australian will have a record – unless they opt out.

Earlier this month the Council of Australian Governments (COAG) approved Australia’s new digital strategy which carries the title ‘Safe, seamless and secure: evolving health and care to meet the needs of modern Australia‘.

The strategy outlines plans between now and 2022 for secure messaging between providers and with patients, telehealth, interconnectivity and interoperability, electronic prescribing and dispensing, test beds for new digital health technologies, development of health apps & tools and workforce training and upskilling.

Digital health strategic priorities
Digital health strategic priorities 2018-2022. Source: National Digital Health Strategy

The Australian Digital Health Agency (ADHA) has indicated it wants to co-design an implementation framework with the broader healthcare sector.

ADHA CEO Tim Kelsey said on Norman Swan’s RN that it is not just another strategy document: “I want to reassure people that this is going to be about delivery and people should hold me and the agency to account for delivering actual real benefit.”

Kelsey also admitted that at the moment the My Health Record doesn’t have as much clinical value as most doctors would want, but that a record of dispensed PBS medications is currently available. More clinical content will be coming soon, such as radiology and pathology.

Challenges ahead

The strategy document acknowledges some of the issues doctors have with regards to security, safety and use of the data: “They [doctors] need assurance that the digital systems they use support them to meet their obligations to keep their patients’ health information secure and private, and that health data will be used safely and appropriately to improve patient outcomes.”

Doctors have also voiced concerns about the medicolegal risks that come with accessing a patient’s My Health Record, for example when diagnostic tests and images will be available that may not have been reviewed and actioned by the requesting clinician. Clear guidance is required on how the reports are to be handled and who is responsible.

Most clinicians will not have an issue with de-identified data in the My Health Record being used for research or public health purposes, but transparency around secondary use of data will be welcomed and would encourage engagement with the system.

Uploading of shared health summaries is happening in general practice but concerns have been raised about the quality of some of the data. The current incentive payments seem to encourage volume. However, if the uploaded clinical content is not useful, others may not engage or upload data from their end. A classic case of the chicken and the egg.

New hope

It seems the Australian Digital Health Agency has sorted out many of the governance issues and is becoming a more transparent, engaging enterprise. An effective implementation strategy will genuinely address the barriers to engagement with the MyHealth Record and not just sprout benefits. I believe there is hope for Australia’s digital health record.