My Health Record – an essential conversation to have in Australia

By Andrew Howard

The recent My Health Record (MyHR) debate has been essential for Australia – across government, technology and health sectors, as well as, with the broader community.  It’s demonstrated how as new technology infrastructures are deployed and technologies evolve, we need to ensure that legislative frameworks keep pace.

And that people, not efficiencies, remain the centre of the system. Because those who engage, support or interact with the MyHR system need to understand it will support their personal health journey now and in the future. 

E-health is changing the health sector

We know that new technologies are rapidly changing Australia’s health system and the way it operates in the future will be vastly different to the way it operates today.  People will receive more health information through technology-enabled systems and devices.  Many consultations will be done virtually, supported by measurement and diagnosis systems that are closer to the consumer’s point of need.  Surgery, too, has already begun to be managed by computers.  In the future many procedures will be monitored by humans – the same way we trust the autopilot in a plane – if we have extraordinarily well-trained pilots.

But it’s not just about technology – it’s also about people. It’s about how, when and where we access the health system. There are periods during our lives where we will rarely see a doctor and other times when we’ll need to access to doctors, specialists and hospitals – and our health records.

My Health Record – one solution to prepare us for the future

The My Health Record database was developed to help prepare for a rapidly changing health system. First deployed in 2012, it was built to be an index service for important health information.  People could opt in to MyHR and control access to their personal health information.  Those with MyHR records could ask their clinicians to upload health information to the record – so that others could access the information.  There were default settings for what was considered sensitive information – such as a prescription for a medication to control an STD.  But in most cases, information would be shared by default.

People could also allow carers and family members access to their medical records through the platform.  They could also control which clinicians could see the information.  An audit trail provided users with a record of the people or  organisations accessing their health data. If an individual accessed the information inappropriately, this would be quickly and easily traced.

Without advertising and government promotion, and limited incentives, the MyHR adoption reached over six million people. Since the MyHR business case, there have been five Health Ministers from both sides of politics who, while needing to re-assess expenditure, agreed that the MyHR is a great initiative and if deployed and managed correctly, will save many lives and reduce the costs of health care delivery.

Privacy and security concerns

The recent decision to move all Australians to MyHR, with the opt out option, raised valid concerns about privacy and security. As pointed out in a Fairfax editorial:

“People who had previously ignored My Health suddenly had to think about the risk that embarrassing, personal information could be hacked and sold or used by governments to persecute or punish. There are precedents including the commercial misuse of social media such as Facebook and a leak of data for 26 million people last year from the British National Health Service.”

Sydney Morning Herald online

In response, Greg Hunt, Minster for Health, announced on 31 July that the MyHR leglisation will be strengthened to match existing Digital Health Agency policy.

This means that a court order is required to release any MyHR information without consent. The amendment will ensure no record can be released to police or government agencies, for any purpose, without a court order.

When it comes to the security of the system, I was directly involved in the designs for defence grade security that was deployed. The security layers were better than the banking sector when it was switched on in 2012.  So, with the ongoing investments in the infrastructure, I am certain that the Australian Digital Health Agency, the Digital Transformation Authority and the Department of Health have maintained an equivalent capability.

Transparency and information control

Like online banking, MyHR gives Australians online access to their health records and control of who can view or access the information. It tracks every ‘transaction’ – who has viewed a record or uploaded information, like a pathology report.

And it provides real time notification via text message or email, when there has been activity on a record, such as a doctor viewing information. If there are inconsistencies, they can contact the Agency to query.

There are also stringent consumer controls that give Australians control over their medical records.

These controls allow individuals to:

• apply a record access code to their entire record so that only those healthcare providers with that code can access their record
• remove documents from their record if they do not want them as part of the record, or apply a limited document access code to restrict access to specific documents, or
• cancel their record at any time to ensure no one can access the information in the record.

These controls are backed up by penalties of prison time and significant fines in the case of unauthorised access.

Hopefully these measures will build trust and encourage Australians to stay in the system. If 97% of Australians adopt the MyHR, this will be a great step forward for the health sector.

The benefits for individuals and families include:

Reduced medication errors.
When your healthcare provider uses digital health to create or dispense a prescription and uploads your health summary information, other health professionals will be able to make better decisions.  For example, if you have seen more than two clinicians who have prescribed medications, these clinicians should be able to see your current medications and avoid prescribing contraindicated substances.   As a backup, your pharmacists will also be able to see your medications, and be able to detect potential issues with your prescriptions.

Supporting dependents with complex or changing health needs.
People who care for family members with complex health issues can have oversight of what decisions, tests or results are uploaded. For example, an aging parent may undergo a test but not know or understand what it’s for. With access to health records, the family member may be able to alleviate confusion or seek further advice from the clinician.

Emergency treatment and treatment on holiday.
Many require treatment from an Emergency Department or at a clinician while on holiday and do not remember their medical history and medications.  If their home GP follows the RACGP guidelines, critical information about your medical alerts, allergies, history and medications will be available. The MyHR already has many reported instances of lifesaving information being available.  With 26 million people on this system, the benefits in these setting will increase significantly.

Pathology reports are available to a consumer and clinicians.
Clinicians can avoid the run-around chasing results ordered by another clinician.  For example, a GP referral may miss key pathology, and so a specialist may order the same tests again. The MyHR will provide quick and simple access to these results.   For a patient – the pathology results will be available online after seven days (or sooner if your GP reviews the results and authorises personal access).

A longitudinal health record that stays with you over your lifetime. 
There are cases where an event early in life may become relevant in later life – such as taking a drug that might have an unforeseen impact on your health in later years.   When new discoveries are made, you or your health professional will be able to check back through your history to see if there was an unintended medical risk.

Child immunisation records.
Child immunisation records are required for childcare and school.  Being able to keep up-to-date and provide evidence quickly and easily is essential for parents and carers.

 

The system also needs to support, and be supported by, clinicians.

In the early days of the health record, some software vendors did a great job integrating the MyHR information into workflow, while others – especially in the GP market – did as little as possible to satisfy the limited incentive programs. Over the last six years, the health sector has been slowly building the necessary integrations from their own budgets.  The opt out policy setting has driven a new wave of investment and innovation.   From a safety and quality standpoint, this has meant a major shift forward in the capabilities of software in the sector, both with the MyHR information and other capabilities being developed to compete in a market that now has digital awareness.

There are new products emerging that will provide decision support capabilities that link local health information with the MyHR to help the clinician navigate the new health record data.

Examples include:

• The ADHA funded 14 test beds that will improve the use of MyHR information in a clinical setting.  There were over 100 submissions, showing that there are many ways that the information could be adopted into clinical workflows.
• Outcome Health is implementing a decisions support tool for GPs to compare their local GP software records with the MyHR.  This will work with a variety of currently offered GP packages.
• MyBeepr, a secure clinical messaging provider is developing the ability to attach MyHR and other clinical documents in a secure chat platform.
• Fred IT, a major pharmacy vendor is linking to the MyHR prescribe and dispense repositories to alert pharmacists to potential medication risks – especially when a consumer may have received scripts from their GP and specialist (who have not connected their systems to the MyHR).

While the focus has been on encouraging GPs, specialists and hospitals to adopt MyHR, other providers will use the platform as use and acceptance of the system increases. This includes allied health professionals, dentists, aged care facilities, local district nursing services or blood collection services. There are benefits to having a holistic record of a person’s interaction with health or wellness providers.

New technologies and data to enter the system

The national infrastructure and the MyHR are just a small sample of the information about to flood the health sector.  Health professionals will find it increasingly difficult to stay up to date with new technology, new data feeds, and the expectations to make faster diagnosis and shorten treatment pathways.   All these new sources of information need to be considered in context, and decisions made about which technologies should be adopted. The MyHR goes to solving some problems in the health sector, but it is not the silver bullet.   A plan that considers the rapid changing environment will help position organisations to take advantage of the new business models that will take hold in the coming decade.

Matt Hancock, the UK’s Secretary of State for Health explained the situation at the 2018 NHS Expo:

We know from painful experience that putting data into one big database is bad practice. But likewise, having thousands of databases that don’t talk to each other costs lives too. The consequence of the failure of the National Programme for IT was for the NHS, its leadership and delivery partners to learn many correct lessons, but also some wrong lessons.

Correct lesson: don’t try to build national databases with all the data in one place.

Wrong lesson: don’t set national rules to allow databases to talk to each other.

Correct lesson: don’t try to procure a new national IT system centrally.

Wrong lesson: let every organisation procure whatever they like locally without any rules on how they are structured.

The MyHR was designed on these principles.  It is not a central national database of all health record data.  The MyHR concept of operations stressed the design of an index to the data sources or ‘repositories’ using templates to structure the clinical information on a common terminology and Health Language Seven (HL7) – the international standard for health care interoperability standards.

These standards for interoperability ensure that new systems or upgraded systems can write their specifications to enable meaningful information exchange.

The e-health sector is responding the lessons learned.  The new Rest API-based HL7 international  Fast Healthcare Interoperability Resources (FHIR) standard was built on the experiences in multiple health systems. FHIR doesn’t solve the need for de-identified aggregated data sets for research – so there will still be some aggregated big data stores.  FHIR was developed to allow health networks to safely and securely find and assemble information to support effective decision-making by clinicians.

The current MyHR and the centralised data store of shared health summaries, referrals and diagnostics is a stop gap until FHIR-based clinical systems are brought online.  In five to ten years, the MyHR will likely evolve into an indexing database that accelerates the ability of local systems to interoperate effectively.

The MyHR and the efforts of the ADHA have laid the foundations for the sector to innovate.  With 26 million people having a digital health record, the pace of change will accelerate.  We need to be able to bring multiple sources of information, such as the local records, MyHR, and other datasets, together into a research platform that can quickly identify issues.  We then need to be able to collectively respond to the problems so that care can be coordinated to focus on the needs of the person.

One of the major issues is the time taken to diagnose and treat a condition.  A recent report showed that referrals in the health sector are 75% incomplete and inaccurate based on the RACGP referral guidelines.  Specialist letters are even worse.  The underlying problem is that people working in the system do not know everything that is required to manage a person’s care.  We need to collaborate and share information.  We should be looking at the way technology can help support decision making, and how it can be used to streamline the referral processes to get a person on the road to wellness faster.

What’s needed for success

On 23 August 2018, the Senate referred the My Health Records Amendment (Strengthening Privacy) Bill 2018   to the Senate Community Affairs Legislation Committee for inquiry and report. Submissions were sought until 14 September 2018.  The reporting date is 8 October 2018.

It is likely that MyHR will become an election issue and it is in the interests of the Coalition and Labor parties to support the success of the system and commit to ongoing reforms.  The major parties recognise the need to control the growing percentage of GDP spend on health – and that the MyHR is a major part of the strategy to improve healthcare delivery.

Without MyHR, we risk returning to a system made up of islands of data and experiencing more problems in the transfer of care.  We would see the same problems repeated over and over, with little capability to pull information together at the point of need.  We would see many more billions of dollars poured into dysfunctional systems, while the consumer loses control over their health journey.

All stakeholders need to work towards building a better healthcare system, ensuring that MyHR is included.

Firstly, the Department of Health, Australian Digital Health Agency, state and territory health departments, clinical colleges, private health insurance, e-health providers and other healthcare providers working together to inform the Senate committee of the plan for the implications of an opt out MyHR and the reforms that new technologies will enable.

Then we need a cohesive strategy that maps out the building blocks that link the technology capabilities into an agreed COAG health reform agenda, including:

• investments in infrastructure and security to protect information held throughout the healthcare system – in MyHR, general practice, allied health, hospitals, diagnostic businesses, and private health insurers
• ongoing education of users and providers in the system to alleviate fear, support adoption and encourage innovation
• accepting the short-term additional costs (and possible system re-platforming delays) to ensure interoperability of healthcare systems in the future, based on FHIR standards
• reinforcing the legislative penalties associated with MyHR record and other privacy breaches including resources for the privacy commissioner and police to investigate incidents of inappropriate access to any health information
• funding research platforms that can utilise MyHR and link other health data, providing an evidence-base that measures effective change to clinical practice, and
• providing evidence to clinicians that using the MyHR, and other decision support systems, will improve healthcare service delivery at an improved margin.

Finally, consumers need to take control of their health.  Australians need to know more about how to use the systems that support their health care journey.  And they need to know that our politicians, healthcare providers, private health insurers, diagnostic services providers, universities, researchers, pharmacies and pharmaceutical companies, medical device providers, medical suppliers, construction companies and technology providers are delivering services that result in better health outcomes without putting personally sensitive health information in the wrong hands.

About Andrew Howard

Andrew is the former CEO of NeHTA and head of the MyHR program. He is an e-health specialist and Director at Third Horizon. Learn more