Opting out or not?
Wed 05, Sep 2018
There has been so much change in Canberra in recent weeks! This includes some important changes to the My Health Record (MyHR).
Health consumers made it very clear that more time was needed to get information out to all communities about the MyHR. So the date that you will have to make a decision on whether you actively want to opt out of the system has been extended by a month to Thursday, 15 November. If you don’t make a decision by this date a MyHR will be automatically made up for you.
To help you make an informed decision, we have been busy doing a Facebook Live and we were also part of a successful Community Forum on 31 July where the public could directly ask questions of Australian Digital Health Agency representatives.
As a result of the recent outcry about security and privacy concerns with the MyHR, the bill has been redrafted.
Proposed changes are that a record will actually be destroyed if an individual requests for their record to be cancelled. The other change is that law enforcement will need to have a warrant for the record to be opened.
Concerns that haven't been addressed in the proposed changes are:
- Secondary use of MyHR data
- Informed and ongoing consent
- The ability to opt-in or -out of the different parts of MyHR
- Privacy default as “open” records (user needs to create pin and other protections)
To help you make an informed decision, here a collection of resources and articles that might help you make up your mind:
My Health Record official website
Health Consumers NSW Facebook Live
Consumers Health Forum of Australia My Health Record Webinar series
Positive Life NSW MHR information
How to manage MyHR (MyHR website)
How to opt out of the MyHR (MyHR website)
ABC News article 1
ABC News article 2
The Guardian article 1
The Guardian article 2
Sydney Morning Herald article
Second Community Information Forum
Positive Life NSW and the Australian Digital Health Agency, together with us, are jointly hosting a second Information Forum for people living with chronic health diagnoses and NGO services about the MHR.
When: Wednesday, 7 November 2018; 8.30am (for a 9am start) - 1pm (tea and coffee on arrival/ morning tea at 10.30am)
Where: The Novotel Parramatta, 350 Church Street, Parramatta NSW (map).
This will be an opportunity to ask questions, understand the benefits and risks of the MHR and work out what’s right for you.
Register here now