Hepatitis Australia has joined the call for a further 12-month extension for Australians to opt out of My Health Record.

In a statement released today, Hepatitis Australia said that given the final form of the My Health Record system will not receive parliamentary backing before the scheduled end of the opt out period on 15 November 2018, Hepatitis Australia fully supports moves to amend the legislation extending the opt out period by 12 months.

While recognising the benefits of the system for many people with chronic health conditions, Hepatitis Australia pointed out that "the highly stigmatised nature of viral hepatitis raises the stakes in circumstances where privacy and/or security of health information is breached. Without trust in the system, and its protections, many who stand to benefit may choose to opt out."

For more information see My Health Record - Decide by 15 November and My Health Record - Only days left to decide. For a summary of pros and cons and what action to take based on how you decide, see the paper prepared by Hepatitis Australia, Australian Federation of AIDS Organisations (AFAO), AIVL, National Association of People with HIV Australia (NAPWHA) and Scarlet Alliance Australian Sex Workers Association. 

Hepatitis Australia has also written to the Health Minister explaining their position and expressing support for a 12-month opt-out extension. Paul Karp from Guardian Australia reported that the Senate has voted today (14 November) to extend the opt out period to 31 January after a motion for 12-month extension was defeated in the upper house.  In the midst of media reports of delays in the online opt-out function, the Health Minister has tweeted that the deadline will be extended to 31 January.

Full statement from Hepatitis Australia

Hepatitis Australia has always recognised the considerable benefit of the My Health Record to many people with chronic health conditions, including diabetes, cancer, heart disease and liver disease. 

However, given the final form of the My Health Record system will not receive parliamentary backing before the scheduled end of the opt out period on 15 November 2018, Hepatitis Australia fully supports moves to amend the legislation extending the opt out period by 12 months. 

This extension was a recommendation of the Senate Community Affairs References Committee in its recent report and is consistent with the needs of vulnerable, marginalised and isolated populations with viral hepatitis. 

People affected by viral hepatitis have both the most to gain but also the most to lose from the My Health Record system. Their chronic health condition may be better managed if all health care providers use the My Health Record to coordinate their care. 

Yet the highly stigmatised nature of viral hepatitis raises the stakes in circumstances where privacy and/or security of health information is breached. Without trust in the system, and its protections, many who stand to benefit may choose to opt out.

This would be an unfortunate and unnecessary outcome given a 12-month extension, in the context of such an important system, would provide time to build community confidence and support its use. 

The My Health Record, must be designed with the needs of of the most vulnerable, marginalised and isolated populations in mind if it going to realise the promised benefits. Nobody should be forced to make a decision on opting out before parliament has finalised the system’s design.  

If the My Health Record is truly a system for “the people of Australia” rather than simply a government or clinical record, the community’s concerns need to be addressed now. 

As of today, there is a substantial risk that hundreds of thousands of people will have a My Health Record created for them without their knowledge and without any understanding of how it works. In addition, privacy settings will be on ‘open access’ risking unwanted disclosure of sensitive health information that is automatically uploaded on creation of the record.

Hepatitis Australia has welcomed the Government’s planned changes to date to reassure the community about the privacy and control of their information. We consider a 12-month opt-out extension  provides the best opportunity to get this system right for all Australians, especially the most vulnerable, marginalised and isolated in our community. 

What Hepatitis Australia believes  needs to happen before the opt-out period closes is:  

• The changes to improve privacy and security that have already been agreed by the government need to be put into legislation;

• other changes to improve My Health Record recommended by the Senate Community Affairs References Committee that have not yet been considered by government need to be reviewed and addressed; and 

• the information and assistance on My Health Record for vulnerable, marginalised and isolated communities in particular needs to be strengthened to ensure people in these communities have an understanding of their individual benefits and risks and be supported to to make an informed decision and set up their record or opt out.

A 12-month extension to the opt-out period will allow time for the above points to be addressed. 

All Australians need to be confident that the My Health Record is going to work in their best interests - that confidence is missing at the moment but can be achieved.