New name and opt-out policy won't save the personal health record

The federal government is set to spend A$485 million to rescue Australia’s failed personalised electronic health record project. All Australians will be set up with a record and can opt out, in contrast to the previous system where patients opted in.

The new system, called myHealth Records, will be revised according to the recommendations of a report commissioned by the former health minister Peter Dutton in 2013. The report had 38 recommendations to improve the existing Personally Controlled Electronic Health Record system (PCEHR). The very first was to change the name from the less-than-catchy PCEHR (pronounced “pecker”) to the only slightly more acceptable myHealth Record.

Other recommendations included the dissolution of the National E-Health Transition Authority (NEHTA), the organisation widely blamed for the overly complicated and unusable system that resulted from nearly A$1 billion in funding. In its place will be an oversight organisation called the Australian Commission for e-Health that will have a variety of sub-committees reporting into it.

The report also tried to address another criticism of the system by tackling the incentivisation of GPs to actually spend time uploading data to their patients’ personal records. The recommendation here was to tie cash incentives to uploading data and that billing for GP management plans require these plans to be uploaded to the patient’s myHealth record.

Probably the biggest change from a political perspective is the default creation of a record for every Australian, then allowing people to opt out. This would certainly address the low take-up rate of the PCEHR. After three years, only two million people have registered for a record so far, with the majority of these records being empty of any meaningful data.

The PCEHR review report showed that even by December 2013, consumer access to the system was dropping rapidly and provider access stayed flat, despite increasing amounts of content being put into the system.

While some of the changes proposed for the personal record may increase general usage of the system, it still remains fundamentally flawed.

The first problem is that the system still represents a “scrapbook” approach to a clinical record. There is no guarantee that all the health professionals involved in the care of a patient will participate and supply information, nor that the information supplied will be complete.

Couple that with the ability of the patient to hide aspects of their record and the final picture is not only incomplete, but acting on it becomes a significant clinical risk. UNSW Australia researcher Professor Enrico Coiera has detailed the extensive clinical risks inherent in a personal record here.

Using the record in clinical practice is extremely difficult. In fact, the Australian Medical Association’s own guidelines details that the personal record is only a “memory prompt” for the patient and that “remains the treating medical practitioner’s responsibility to take a clinical history from their patient”. In other words, a doctor can not rely on the personal record to make clinical decisions.

Coiera goes further and voices a view that I share which is that summary records are essentially pointless and that the only shared record that makes sense is a fully distributed and shareable clinical record. All practitioners involved in the care of the patient would have access to the record or could obtain appropriate access when necessary.

There are variations of this model that also would work. In one model, only the information pertinent to the current treatment of a patient is shared among the care team and the patient using a peer-to-peer mechanism.

There is the possibility that the sharing mechanism could actually use a shared ledger system such as the one that underpins cyber-currencies. A major benefit of this system would be that it would be unnecessary for the government to be involved at all, as no centralised infrastructure would be needed.

According to media reports, the government expects the myHealth Record to save A$2.5 billion a year. Where this number came from is unknown but it is different from the original estimates of Booz and Co which put the annual savings at A$7.6 billion. The proviso here was that this was a fully implemented system with 100% participation.

However, savings should be treated with a great deal of scepticism as there is no mechanism by which incomplete participation in this system would be able to deliver any benefits, let alone those claimed in the budget.

It is really unclear why the government is persisting with a system that, in the eyes of e-health experts such as Sydney clinician and commentator Dr David More, is deeply flawed. It is possible that in supporting this scheme, they don’t have to think of alternatives and can be seen to be participating in some sort of digital health strategy.

David Glance receives funding from the commercialisation of a clinical platform that supports the PCEHR. He has received funding from the Department of Health and Ageing in the past.