By the end of 2018, a My Health Record (MHR) will be created for every Australian unless they choose not to have one.
This major development brings potential benefits – but also raises complex questions for individuals to consider, according to Leanne Wells, CEO of the Consumers Health Forum of Australia.
Wells reviews the pros, cons and challenges involved, in the #LongRead below.
Leanne Wells writes:
After years of uncertainty about the future of a nationally effective eHealth system, Australia is now preparing for the biggest step yet towards a near-universal scheme with the expansion of the My Health Record’s (MHR) reach to all people – except those who choose to opt out.
So the crunch questions about the pros and cons of MHR now take on a more immediate and direct import for the majority of Australians who have so far not signed up.
The Consumers Health Forum has strongly supported MHR and the change to an opt-out approach because we believe that, for the majority of Australians, the potential individual and national health benefits outweigh the risks that it may pose to privacy and security.
In simple terms, the more Australians who use MHR, the more use it will be to Australians.
Going for opt out makes it much more likely that MHR will become effectively universal with all the benefits of scale, interconnected care and potential for transformational change that this offers for patients and for the health system.
It should not be seen as a revolutionary or final version that solves all our problems and that never changes – it is an evolutionary step that will only get to where it needs to be with use by, and engagement of consumers and health professionals.
A common complaint of the current level of MHR information is that often it is too meagre to be of much use and that too many health providers are reluctant to use it for cost, efficiency, and change-resistant reasons.
Consumers have also regarded it as clunky, although improvements are underway.
Yet opt-out stands to bring us much more quickly to an inflection point where, for the first time, consumers en masse will have access to their records – and to personally control who sees them and under what conditions.
We see the ability to access our own records in this way as a key step in the shift from health consumers as passive patients, to consumers as active partners in their own care, exercising choice and control.
It is important to compare MHR with the record keeping we currently have, made up of fax machines and filing cabinets, not just a future possible ideal state that My Health Record could or should reach. The best way to reach the connected digital health future we want is to take part in building it.
Further, don’t just think about how My Health Record could work in our current health system: what totally transformed models of care in the future could My Health Record enable?
A somewhat comparable development in terms of population-wide impact has been the revolution triggered by electronic banking in terms of consumers’ ease of access to payments and accounts. While this has increased the risk, though still relatively low, of accounts being hacked, who would go back to the uncertainties, queues, and time-consuming transactions of pre-internet banks?
So, to the key pros and cons of the opt-out measure. There are many more than listed here, each with greater detail. You also need to consider these as they relate to your own personal circumstances, as what we have listed as a pro may be a con for you.
Both pros and cons
Centralised record keeping – Having your own and your family’s health information such as immunisations, allergies, medicines, and end-of-life wishes available for access from a central database makes it much easier to ensure it is available wherever and whenever you need it, but it may present a single target for bad actors to access a trove of individuals’ health information.
Government oversight – Less fragmentation of records than if they were managed by a number of businesses, health providers or by the individual consumer, more transparency and accountability than if managed by industry, but concerns about access by other government departments, law enforcement or future changes to legislation are reasonable.
Low maturity of digital health in Australia – My Health Record already has a lot of great features, but not all that it could. This presents an opportunity for it to be shaped and improved over time by consumers.
Complex processes – Once your My Health Record is activated, two years of Medicare, PBS, immunisation and organ donor data will load on to your record. If you activate it by logging in, you are asked if you want this to happen. But if it’s activated by a health professional uploading something to it, then it will load automatically. This means from day one of the data upload, there will be clinically relevant information available in your record. However, if you don’t want all that information available and you haven’t already nominated not to have this information uploaded, you have to actively go in and set the privacy controls. This means we as consumers have a responsibility to go in and set the controls we wish and get others to do it too.
Requires conversation and collaboration between consumers and health professionals – Your GP and pharmacist are the best people to talk to, for learning more about what My Health Record means for you. Doing so will lead to more shared decision-making and collaborative care. However, not everyone will have access to a GP or pharmacist who can talk about it, and not all those who can are able to take the time to do so.
Consumers gain access to records about them that otherwise they might not see.
It is likely to significantly accelerate the sign-up rate from the current position where after five years, only about a quarter of the population have joined.
Greater coverage by My Health Record will help deliver more responsive health care services, and propel doctors, specialists, diagnostic firms, hospitals to maximise their eHealth involvement.
Consumer access to increasingly comprehensive and timely personal health records will stimulate engagement with our care, enabling us to be better informed and more likely to take-up medical advice.
More health information available to more health professionals should stimulate better coordinated care.
Having health information collated and accessible in one place would deliver more accurate and immediately available patient data when people need care away from home and in the event of emergencies. This will enable availability of information about patients ranging from allergies to advance care directives.
The availability of population-wide and de-identified health data enabled by MHR offers huge potential, if privacy and security requirements can be met, in ascertaining what works and what doesn’t work in the health system, ranging from medication results to health provider performance.
Greater consumer control of who can access what parts of an individual’s health care information.
For a supportive view, see this from the Australian Digital Health Agency.
Opt-out removes the specific requirement for people to opt in to MHR. That will make it likely that many people automatically enrolled on to MHR will not be aware of the range of health practitioners who can access their information without their knowledge and the risks to privacy that may pose. Strict privacy controls, set by an individual, are a central feature of My Health Record. Consumers can set access controls on specific documents or their entire record, and they can set up email or SMS alerts when a healthcare provider organisation accesses their record for the first time. These controls are good but require the consumer to be aware of them and use them.
Risks and benefits are individual and context-dependent – not everyone will be able to make a good judgment on what should be in or out of their record.
Opting-out or making use of My Health Record requires that consumers have sufficient health literacy and digital literacy as well as digital access, and not all Australians do.
Consumers might not be aware of the default settings of their record – they must log in to set access codes or otherwise manage their privacy and security, and not everyone will know how or why they might want to do so.
Healthcare provider initiated uploading of two years of MBS and PBS data once a record is activated helps the completeness of your record, but doesn’t give you a choice to say no to those data being logged beforehand unless you access the record first and decide not to upload this data. Prescription information could give away diagnoses a consumer would otherwise prevent from being uploaded, and though for future data a consumer can tell their healthcare provider not to upload individual items to their My Health Record, that’s not an option for past MBS and PBS data.
In the wake of disclosures about data breaches such as the Cambridge Analytica embroglio and problems with release of Medicare/PBS data in Australia, Australians will need rock solid assurance that the privacy and security protections are world class, and will be continually improved.
The Government and/or ADHA needs to be transparent with the public about the policies and procedures they have in place around access to My Health Record information by law enforcement and other government agencies, and consider whether changes to guidelines or legislation are needed. The Agency is authorised to use or disclose health information from a My Health Record if it is reasonably necessary to prevent, detect, investigate, prosecute, or punish a criminal offence or breach of law. Transparency about the policies and procedures by which they fulfil their legislated duties will help consumers with concerns in this area understand the limits and protections built into the system.
For a critical view, see this chapter abstract from the book, Tensions and Traumas in Health Law.
A closely related issue to the My Health Record rollout has been the governance concerning third parties’ use of the wealth of data that will be generated.
The upside of such data use would be to provide the evidence for improved service planning, better policy development, and research.
The Government recently released a framework document, which has provided an encouraging start for a regime that would not take effect before 2020. People with a My Health Record will be able to choose not to have their data used for secondary use purposes by selecting the ‘withdraw participation’ function in their My Health Record – we understand that this function will be available by the start of the opt-out period. The framework also flags that ‘dynamic consent’, the opting in or out of secondary uses on a case-by-case basis, is on the development timeline.
Secondary uses will not be allowed for ‘purely commercial’ purposes, nor will insurers have access to the information. The AIHW is charged with looking after secondary uses and will be developing the policies and structures needed in consultation with the public over the coming months and years.
See the framework.
For more information on how electronic health records can help population level health research, see this article, Using Electronic Health Records for Population Health Research: A Review of Methods and Applications.
Facebook was around for ten years before people twigged to issues around consent and privacy. Australia must be more proactive in safeguarding eHealth, as a future crisis could lead to diminished possibilities in terms of care received, and discourage people accessing it for fear of things being recorded they don’t want.
Perception becomes reality, and consumer fears about privacy and security could lead to people avoiding doctors and disclosing less when they do see them. This is especially important for any marginalised, stigmatised, or discriminated against group – such as many who are Aboriginal or Torres Strait Islander, mental health consumers, sex workers, drug users, or people living with HIV.
It is also important for the Federal Government be acutely mindful of how fickle community trust and confidence in a system such as My Health Record can be: trust can be slow to build, but quick to erode.
Communication about benefits and the assurance about safeguards have to go beyond what is required or even expected to ensure trust is not maintained, but built, as various consumer sentiment barometers tell us that trust in institutions generally is at a low ebb.
The consultative approach taken with the framework to guide the secondary use of My Health Record system data provides hope that this may be the case with My Health Record in general.
Health has lagged behind other sectors for too long when it comes to digital innovation. It’s time to accelerate and champion what digitally-enabled healthcare can do for the community.
• Leanne Wells is CEO of the Consumers Health Forum of Australia.