My Health Record: to participate or not?

by Grace Riley

By now, most Australians are aware that they will be receiving an unsolicited enrollment into the Federal Government’s digital health record system – My Health Record. My Health Record is an online summary of your health information that you can share with your elected healthcare providers.

You and your children, if you are a parent, are being automatically enrolled into the My Health Record system because the Government has passed legislation that changes the system from opting-in, where you elect to have a record, to one of opting-out.

This means unless you DO something, a My Health Record will be created for you and all your medical information will be held within it.

For some people a My Health Record will be a welcome relief from having to manage the information flows of complex medical issues they may have. It’s expected to provide safer, faster care in times of emergency especially if you are unresponsive and it will assist healthcare workers to better support people with cognitive issues, language, or communication disability.

For others, there are valid concerns about the information a My Health Record might contain, who may obtain access to it and how that information might be used, or not, by healthcare workers.

If you are reading this, it’s likely that you have a Lyme disease diagnosis, Lyme-like illness or some related chronic illness attributed to a tick bite. In fact, your medical records already held by Medicare, and accessible to you via MyGov, will show this as well.

You are likely to have had several years of chronic illness necessitating multiple visits to general practitioners and medical specialists, dozens of prescriptions from pharmacies, a considerable number of pathology investigations and allied health supports, like physiotherapists, speech therapists and the like.

You are also likely to have suffered discrimination or disrespectful treatment in your health journey to diagnosis. You are likely to have endured strong debates surrounding the nomenclature associated with the term ‘Lyme disease’ and you may also have the term Lyme disease [?] written in your medical history, in various forms.

You may have a historical medical diagnosis of somatoform disorder, conversion disorder, or some other kind of mental illness, often prescribed to patients with medically unexplained symptoms. And some folks are in the appalling situation of carrying a label of Munchausen syndrome or worse still, Munchausen’s syndrome by proxy.

Each of these are LABELS, without context. And therein lies the issue for people who find themselves in a contentious medical situation or with a controversial diagnosis - a My Health Record carries no contextual information, just labels. Most of us have already experienced the effects of the biases inherent in many healthcare workers encountering ‘Lyme disease’ as a label.

As you make your decision to participate, or not, it’s important to consider your unique health situation and make sure that you fully understand what you are being signed up to, and how your My Health Record will work.

If you decide you want a My Health Record, you don’t need to do anything. A record will be created for you by the end of 2018.

If you decide that you do not want a My health Record you have until 15 November 2018, to complete the online opt-out process.

According to government literature, if you decide that you would like a My Health Record in the future you can create one at any time by following the steps to register.