Your choice your control about your information about you - My Health Record

There has been a lot of debate about the privacy impacts of My Health Record. Some people were uncomfortable that it had changed from an “opt in” scheme, where you had to make a decision to participate, to an “opt out” scheme where you participated unless you acted to not participate. Other people were uncomfortable with the level of protection in the law for the information stored in the record. Some people welcomed not having to repeat everything to every health professional and having detailed information readily accessible and under their control. So- is My Health Record good or bad- how do we know?

Like most things, there are both positives and negatives. My Health Record, used the way it is meant to, will have helpful outcomes, especially for those who have a lot of interactions with health professionals. It allows all your relevant health information to be in one place, and you can control who has access to the information. To do that, you need to understand what information is held, and how you can use your privacy settings with the record to control who sees what.

For example, you may not want some health providers to have access to sensitive information about your mental health, or aspects of your medical care or prescription drug usage that you do not want to share. On the flip side, you can decide that it is more helpful if a particular treating health professional has a full picture of what is going on in your health care, including pathology tests, x-rays and scans and prescription drugs.

If you participate, health professionals will be able to upload information directly to your record and other health professionals, will be able to review that information.

You might decide that some health information reveals things about you and your health that you only want to share with relevant professionals. By using the privacy controls and content settings you can make sure that only the people you want to have access to your information can have access to it.

There is an exception to this: law enforcement bodies will be able to apply for access to your record through a court and the court will then decide if information is released and what information is released.

For many people in our community including sex workers, people from the trans and HIV communities have a right to be wary of the online database.  Concerns are well founded and participation in the scheme could lead to prosecution and stigmatisation from medical professionals.  It could be deeply problematic for many and for those who are not health literate, do not have access to computers or the internet and do not know how to navigate the government portals.

The use of My Health Record has to be about choice and control; your choice and your control about your information about you. That means that you need to be empowered and equipped to be an active and involved health consumer.

It is important that you have a look at what information can be held on your My Health Record. You need to understand both the privacy protections available and their limits. Then you can decide if participating in this scheme is for you.

You can opt for your information to not be used for research purposes, decide who and in what circumstances the information is shared, and determine what information is included.

After thinking about this, you might decide that you do not want a My Health Record. That is your right and you can ‘opt out’ – but you need to act now. Unless you ‘opt out’ by 15 November 2018 a record will be created for you. Check out the My Health website or contact the AIDS Action Council and speak to one of our peer navigators or counsellors and put yourself in control of your health information.

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