Opt out or opt in – but whatever you do make a decision!

After months of anticipation the big day finally arrived – as of 16 July 2018 Australians can choose to opt-out from having a My Health Record

We can spend time on the fiasco that the opt-out roll-out has turned out to be or even debate the pros and cons of the system but what is much more concerning to me is that, despite a very significant media exposure, there still appears to be a huge number of Australians that remain blissfully unaware of what is happening.

In order to understand the implications of the changes one should look at what we had before the opt-out period and what we will have after the opt-out period:

The system prior to 16/07/18:

1. Some patients had no My Health Record – by choice or because no one has asked them if they wanted one
2. Some people chose to have a My Health Record
3. Some people were surreptitiously signed up for a My Health Record without their knowledge or forgot that they were asked to sign up for one
4. Some people, such as minors, had a My Health Record created when they were born

During the opt-out period:

1. If you do not already have a My Health Record you can contact the Department and elect not to have one
2. Some people will elect to op-out only to discover to their surprise that they already have a My Health Record – they can still elect to cancel it although that the data that is already contained in it will remain there for thirty years after their death (or 130 years if the date of death is unknown) – it will however not be visible to the patient or Clinicians (presumably it will still be available for secondary data use)
3. Some will elect to create a My Health Record but restrict the addition of historical Medicare and PBS data (typically data since 2016)

The system after 15/10/18:

1. People who already have a My Health Record will still have one
2. People who ACTIVELY CHOSE to opt-out will not have a My Health Record (but their data may still be collected behind the scenes – see below)
3. People who elected not to do anything will automatically have a “shell” My health Record created for them that will initially contain no data.

It is very important for all readers to understand how this “shell” is populated with data:

• The very first time anyone enters any data into the system that would normally be added to the My Health Record a large vacuum is activated that would suck in all PBS and Medicare data from the previous two years (which is being collected, unseen,  in the background regardless of any choices we as patients make). This action could be as simple as the act of a Pharmacy dispensing a script electronically
• A hugely important issue that has slid under the radar and that the media has not highlighted is the fact that the legislation has changed from the longstanding principle of INFORMED consent to now being a matter of STANDING consent – in simple terms it means that your healthcare provider has no legal requirement to ask your permission to upload your health information to the My Health Record system. It can be discussed with you but no permission is required.

           THIS IS A MASSIVE SHIFT IN THE LEGAL PRINCIPLES INVOLVED 

 

• There has also been some very shrewd changes in the way that the electronic health record systems that GPs use now uploads to the My Health Record system:
  • Regardless of whether the patient has consented to having a My Health Record every single pathology or imaging request will have the following at the bottom of the request:

 (This slide is from a presentation done June 2017. They have since figured out where to place the consent – right at the bottom of the screen where the vast majority of Clinicians will not notice it or remember to untick the option)

 

• The Digital Health Authority has stated that patient’s who has elected to not have a My Health Record will not have any data uploaded. I am not an IT technician but the following slide would suggest otherwise

1. The electronic “call” is supposed to check if the person has elected to have a My Health Record (Still referred to as the PCEHR in the slide)
2. Any uploading request of an electronic pathology/imaging upload for a patient creates a “disclosure” which will enable that information to be uploaded – even if the patient has chosen not to have a MHR (“Does PCEHR Exist” call returns False)

I may be wrong

and would love for someone from the

Australian Digital Health Authority to

correct me if I am.

As things stand it would however appear that every single erroneous omission by a GP to untick the upload box, or a Pharmacist dispensing a drug, would result in the creation of a datafile for a patient – invisible to the patient and Clinicians but adding to the greater datapool that could be used for secondary use. Or by hackers.

So please don’t be a passive observer – make an informed decision.

And while you are at it set the access and notification controls up

if you do decide to have a My Health Record