-- Media Release --
Australian Privacy Foundation
11 July 2018
For Sale - Your Privacy and Your Health Data.
Did you know that the government is already buying health data from your GP?
My Health Record (formerly known as the PCEHR) has been working since July 2012. Initially it was hardly used, which raises the question – if it’s so good why was it not promoted and used by GPs? Rather than address the many failings of the system the government decided to do two other things:
The first was to change it from an opt-in system to an opt-out. That means rather than you choosing to be registered, the government would do it for you unless you decided you didn’t want to be registered. They have also changed the need to first obtain your consent to register you and to gather and store your health data. The government hopes that if more people are registered GPs will use it. This is a strange argument, considering its lack of usefulness.
The second was to try and buy health data from your GP. The government’s spin is that it is a part of the Practice Improvement Program (the ePIP). GPs must upload a certain number of Sheared Health Summaries each three month period t get paid. The government claims it only takes a few seconds and a couple of clicks, but this does not comply with the obligations the AMA say GPs have when managing eHealth Record. If it is quick and easy to do, it probably isn’t worth much. The government is paying for bulk, not quality. They don’t want it for providing health care; they want it in order to link it to other data and to monitor health providers.
The RACGP are in favour of GP’s being given an “incentive”, although they are not particularly happy with the ePIP mechanism. There is also a Medicare code that GPs can use to get paid for the time they spend gathering and uploading your data; not treating the patient. All this takes time out of the consultation; time that could be better used treating your condition.
Let us tell it like it is: GPs are being asked to sell your health data to the government. You give it away hoping to get good health care. If a tradesperson were to claim they were not selling a service to their customers, they were merely reacting to an “incentive”, it is doubtful the ATO would agree. Why should the government get away with calling payment for a data transfer transaction something other than it really is – buying your health data?
There is evidence that paying for a patient’s health data doesn’t actually work very well. In a recent article  it s argued that “Put simply, if you pay people to do something, the vast majority of them will do the bare minimum required to get paid.”
For a GP to be able to sell your health data to the government you need to be registered for a My Health Record, so if you don’t have one you are probably safe. As soon as you are “given” one, your data may end up in the government’s database and it will stay there until well after you die. You can’t delete your record (only de-activate it) and you can’t delete any of the data in it.
There is a good case to be made for government collecting performance and aggregate data so that they can make better decisions regarding health funding and health care policy. However, this data is significantly different from an individual’s personal health data. The government has not provided a satisfactory answer to the question “what are the health benefits for a patient to give their health data to the government?”
Do you really believe the government when they say it is “your” health record? It’s about you; you just don’t own it. Your health record is not your property in Australia. Legally, it is your doctor’s record, not yours. The Productivity Commissioner has proposed that this be altered, to form a joint record.  Don’t expect that to happen any time now. This push to buy your health data has a lot in common with other attempts to get at and use your data:
Other examples include Health Engine selling patient details to law firms; Facebook selling data to Cambridge Analytica to influence elections and the Brexit vote; Ancestry.com making available your DNA and family history to police departments and other companies. It is not clear if the police are paying for this access but they are still getting at it, without your knowledge and/or explicit consent.
The reality is that your health data is being used for far more than your health. In the trade this is known as monetising your data. Your data has become a commodity but it is unlikely you will get paid for it. It is even more unlikely you will know much about it or have any say in it.
This is having major negative effects. Trust is out the window. Can you trust your doctor has your best interest at heart when they are selling your data to the government? Can you trust the government not to misuse your data? Can you trust the system to keep your data safe and private? The system is more than just My Health Record, which is designed to permit data to be downloaded to GP and other systems.
The government will be obtaining your health data from more than just your GP and will be doing it without your explicit consent – it will be assumed.
The government will be telling you that there are many professional and health related institutions that are behind this scheme. Ask yourself why? The simple answer is because they want to get at your data. In some cases it could be because it will improve your health care. In others it won’t.
Who do you trust to tell you the truth?
Do you trust a government prepared to buy your health data to tell you all you should know about My Health Record. Look at the material they make available about opting out. Apart from the glowing claims about benefits, do they talk about the costs, the risks and the fact that they are paying for your data to be uploaded?
Are you really convinced that you understand my health record well enough to realise the risks to your privacy?
If the answer is yes; do nothing; your GP and the government will do the rest. You don’t have to know what’s going on, and you probably won’t be able to find out.
If you don’t, follow the advice of Positive Life NSW – if in doubt opt-out. You can do this from 16 July – if we can trust the government to be telling us the truth.