My Health Record – opt out trials in Nepean Blue Mountains and North Queensland

Since 2012, people around Australia have been able to create an electronic health record on a Commonwealth database. The record is then available to treating health professionals. This system is obviously very valuable for people with intellectual disability who often have trouble recalling and giving a medical history. This system now has a new name - My Health Record.

2.6 million people now have My Health Records and the Australian government is keen to expand the system so that far more people have them.


The government is conducting an “opt out” trial in two areas-Nepean Blue Mountains Primary Health Network and Northern Queensland Primary Health Network.  During March, people living in these areas will get a letter from the Australian Department of Health saying that a My Health Record will be set up for you unless you say they don't want one.  Then, from July, doctors and other healthcare providers will be able to look at all of your record unless you have set "access controls" on the record.

Many people with intellectual disability who receive the letter from the government will find it hard to understand. Families and others can then support the person to understand and decide about whether they want to opt out of the system or set controls on who can access their records and which records can be accessed.

If a person cannot understand the decisions involved with a My Health Record, a guardian or family member can apply to be "authorised representative" for My Health Record and make decisions for the person. Authorised Representatives have to make decisions based on any wishes of the person with a backstop of making decisions based on the person's personal and social well-being. For information about becoming an authorised representative, see

Public Guardians at present cannot be authorised representative. NSW CID has been strongly advocating for this problem to be fixed and the Department of Health has said that it will move on it shortly.

My Health Records have great potential to improve the health of people with intellectual disability.  However, for privacy reasons, some people may want to set access controls on their record or even opt out from the system.

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