Are you one of the 5 million Australians who have a My Health electronic record?
With a new record created every 38 seconds and default privacy settings which may allow the receptionist at your dentist to access your medical history, prescriptions and test results it might be worthwhile checking.
The stated objective for My Health is to improve health outcomes and give people more control of their health and healthcare.
The merits of such an objective seem worthy at first glance but how can a My Health record give people more control of their health and healthcare if they don’t even know a record has or will be created for them?
The True Justice notes that the FY17-18 Budget Papers provide that every Australian is able to have a record unless they prefer not to. This suggests quite a different approach to implementing the initiative than the unilateral creation of records for every Australian, even without them knowing, that has been adopted.
But this isn’t the only aspect of My Health which has caught the eye of readers and reporters.
Privacy Risks for Individual Medical Information?
Only by setting a Personal Access Code can you limit which health care provider or employee can access your record.
You also have the choice to opt out if you don’t want a record created. Apparently there will be a three month window of opportunity to do this in 2018 but Newscorp reported that the Australian Digital Health Agency was unable to provide guidance on when this window of opportunity may present itself.
The True Justice was unable to find any information on the opting out on the My Health website. Relevantly, the FY17-18 Budget Papers referenced above stated that every Australian would be ‘able to have a record, unless they prefer not to.’ This aspect of the initiative also seems to have changed since it was described within the House of Representatives.
Newscorp has reported that it was revealed to them that there will be no public advertising of the My Health record or the option to opt out. The Consumers Health Forum commented that confidence and trust in the system are vital to the success of My Health and that consumers need to be well informed about the record, their choice to opt out and the benefits and consequences of their decision.
The Privacy Foundation queried the decision not to better publicise the automatic creation of records for every Australians including the opt out requirements. The foundation is running a campaign to highlight the risks of the My Health initiative and to argue that creating an incomplete, secondary collation of health records attached to the internet and which may be used for various purposes poses significant risks to individuals and should not be a matter for the federal government when health care is the jurisdiction of the States and Territories.
Regardless of the perceived merits, providing a choice to opt out is an important aspect given that the system is essentially a collation of immensely personal information which many individuals wish to remain private and which the medical profession is bound to protect.
Importantly, any significant changes to an initiative from the description provided in Parliament by the representatives to the people of Australia should not be adopted without explanation. Supporting justification for the opt out approach was noted as resulting from a small trial limited to just two locations within Queensland. Such a trial is unlikely to be considered by many as being broadly representative of the entire electorate. Actions like these can have the effect of diluting public trust.
It may be the case that the Australian Government considers the rate of opting out may be too high to preserve the purported benefits and achieve economic sustainability of the system but even if this is the case, this is not the only risk to the effectiveness of the My Health system.
A secondary and incomplete collation of information?
The effectiveness of any health information collation system must surely depend on the completeness of the system. Although it is understandable that achieving such a point is necessarily a work of incremental progress rather than immediate completion, it raises the risk of the system being of such little benefit that adoption of and engagement with the system is low which in turn reduces the amount of clinical information uploaded to the system creating a potentially self-perpetuating cycle of under-use which risks the system never fully realising its potential.
Australian Government figures state that 10,243 healthcare providers are connected, including General Practices (GPs), hospitals, pharmacies, aged care residential service and allied health providers. General Practices account for approximately 59% of the health care organisations registered with My Health and were offered a financial incentive payment to upload patient files to the system.
The unanimous support of the Council of Australian Governments (ie. States and Territories who bear responsibility for their respective health systems) suggests that many of the 2 million clinical records already uploaded may have come from state public health hospitals and services.
Chemist Warehouse recently announced they would be connected to the system in 2018. All other community pharmacy software vendors have already either connected to the system or agreed to and 12,249,569 prescription and dispense records have already been uploaded to My Health. Since Chemist Warehouse represents 30% of the community pharmacy market, this number is likely to increase significantly following their connection.
Progress in populating the individual My Health records appears to be modest when one considers the 2 million clinical records uploaded for a population of 24.7m.
Slow progress in health providers using the records when the records are being created rapidly – one every 38 seconds My Health states – raises the risk of the My Health accounts being compromised with detection of the compromise being relatively slow. Such an occurrence when highly personal and identifying data is involved is of paramount importance not just to the individual affected but also the integrity of the medical services and funding structures which rely on allocation of finite resources to eligible persons. Any compromise is costly in many respects for all involved.
What is My Health if it is not a complete and accurate reference point for both the individual and properly approved health providers?
The True Justice observes an irony in dedicating a significant quantum of finite taxpayer dollars to the automatic creation of medical records to allow individuals to have better control over their health, reduce duplication and better inform treating doctors who are unfamiliar with the patient’s history when the system is arguably little more than an incomplete secondary collation of records which individual may not even realise exists and which apparently won’t be used for treatment purposes.
If My Health won’t be used for treatment purposes how can My Health contribute to reduced duplication and better inform health care and treatment options and decisions?
What do you see as the benefits to the individual to outweigh the potential risks? Do you think the automatic creation of My Health records for every Australian gives individuals the right amount of control over use and access to their personal medical information? Feel free to comment below or email firstname.lastname@example.org with your perspective.