It has been fascinating to watch the issues surrounding the My Health Record evolve.
Longstanding readers of my blog would know that I have had a bee in my bonnet for many years about informed consent to participating in the My Health Record system
The system is designed so that users can control the access to their confidential records and how they are notified when someone accesses their records. The scary reality is that less than one percent of the nearly six million people who have a My Health Record had accessed that section of their files to activate these controls & notifications.
And yes, you read correctly, they need to be activated as they are switched off in the default mode.
This is even more relevant with the pending start of the change to an opt-out system which will see at least 95% (or more) of Australians end up with a My Health Record unless they actively decide to opt-out
The question arises why so few people can be bothered to control and monitor access to their most private health records – it is possibly that they see it as a greater good, “trust the government” or, more likely, were simply not provided with proper informed consent when they signed up.
This brings us to the next stage of the roll out – addition of pathology and imaging results to the Shared Health Summaries and other documents that GPs and other providers upload.
GPs all over the Country have noticed that the latest versions of their desktop software now included a box with every requested test that needed to be ticked if you do NOT wish for the results to be uploaded to the MHR.
Yes, once again you read right – it defaults to uploading and this setting cannot be changed. The box must be ticket every single time a test is request for those who do not wish to have their results uploaded.
The first response by those who observed this was that it must be a design error that will be fixed. This is incorrect – the design is by intent as admitted by the Australian Digital Health Authority
The rationale is that the Legislation has changed and has enabled a move from informed consent to that of standing consent. Healthcare providers no longer need to explicitly obtain permission from the patient before accessing or uploading information to their MHR
One can only hope that this rather important legal principle is adequately discussed in the pending medial blitz prior to the start of the op-out changeover. It is especially important with the unresolved issues regarding Secondary use of the massive data repository. The recently released framework regarding this issue purports to guide the secondary use of MHR system data for research or public health purposes. It is a voluminous document that fills any skeptical reader with unease