Do you want an electronic health record? If not, you need to opt out

Update November 2018. You need to tell the Government if you do not want a My Health Record. What does this mean for people with intellectual disability?

MJ and Alanna

Update November 2018

The Government has extended the deadline for opting out of a My Health Record. New laws are being passed to address some of the concerns raised by people. The new opt out deadline is 31 January 2019.

You can find out more at the My Health Record website.

The Federal Government has set up the My Health Record system so that a person’s health information is available online for health professionals.

This will usually be a good idea for people with intellectual disability who may find it hard to tell a doctor or hospital about their medical history.

However, some people do not want a My Health Record because they see it as an invasion of their privacy.

If you don't want to record, you have to opt out by 31 January 2019.

Council for Intellectual Disability (CID) has been strongly advocating that the My Health Record authority should conduct a big information campaign so that people with intellectual disability and their families can make an informed choice about My Health Record.

We have been very disappointed by the lack of action on this. However, there is now a fact sheet aimed at people with limited literacy. Download the fact sheet from the My Health Record website

For people who do want a My Health Record, they can still think about what 'access controls' they want on the record. Access controls put limits on which health professionals can see your health records and what kinds of records they can see.

CID says that people with intellectual disability should be given maximum support to make their own My Health Records decisions. However, if a person cannot make their own decisions, a guardian or family member can apply to become 'authorised representative' for the person. Find out more about authorised representatives.

Find out more


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Published 24 September 2018

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