My Health Record – Why I’ve opted out

I’ve opted out of the My Health Record (MHR). And, dare I say it? You should think about it, too.https://maureenhelen.com/wp-content/uploads/2018/08/Why-Im-Opting-Out.png

According to the Australian Government

My Health Record is an online summary of your key health information.

When you have a My Health Record, your health information can be viewed securely online, from anywhere, at any time – even if you move or travel interstate. You can access your health information from any computer or device that’s connected to the internet.

Under the My Health Record Act 2012, general practitioners, hospitals, pharmacists and other health professionals can record, online, even the most sensitive information about their patients’ mental, physical and emotional health. This can include diagnoses, treatment and outcomes.

It is estimated that around 6000 of Australia’s 25 million people have already agreed to this record, most often at the prompting of their general practitioner. Existing records can be hidden, not erased if people so choose.

What’s new? We will all be included in the scheme, unless we opt out by 15 October 2018.

Widely shared electronic records may, in some cases, assist with health care. The downside of such records, however, outweighs the possible gains.

Some reasons why I opted out of the My Health Record

  • The program is government owned. Future governments can change the laws regarding the use of the data collected – a chilling prospect.
  • The MHR program gathers large amounts of raw data that can be matched with other data sources such as Medicare and Centrelink records to create potential financial and other problems for individuals.
  • Hospitals and most clinicians already use an electronic medical records system. Information can obviously be transmitted between them on a needs basis.
  • However, errors in diagnosis and treatment can occur and these also will be transmitted through the My Health Record, In other words the MHR introduces yet another mechanism for error.
  • All information technology is open to individual and institutional hackers.
  • MHR is a summary system, not a full health record. The abbreviated information may be unreliable and of little value.
  • Recent experience with the online Census puts in doubt the ability of the Australian government to manage information technology efficiently, effectively or reliably. Remember the incident where a politician revealed information about a woman’s Centrelink information?
  • According to the Australian Privacy Foundation, ‘…the gung-ho attitude of technology specialists and the politically driven decision to make the My Health Record opt-out means that patient trust, patient choice and patient care are being put at major risk’.
  • General practitioners (or the owners of practices) are paid to upload health data into the program. This be  may at the expense of time they have available for consultation. Your information is being sold to the government. This makes me wonder if the program is for patients, the government or health practitioners.
  • Individuals are responsible for the data uploaded into their record. They must ensure that their records are accurate and up-to-date, for the rest of their lives.
  • Those who do not have access to a computer or the internet will need to go to Centrelink to check what is on their MHR. Those who do not have the necessary skills are immediately disadvantaged.

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An alternative to the My Health Record

Ian Hargreaves, a hand surgeon, says in a comment in this weeks MJA Insight,

For the moment, the most secure way of guaranteeing that your anaphylaxis or your diabetes is documented, is to wear a bracelet or pendant with the details on it, which is instantly accessible by every surf lifesaver, paramedic, or doctor who has never seen you before.

There are several companies which offer this service, including the St. John Ambulance Association.  Another is MedicAlert.

For more information about the My Health Record, I highly recommend this article from  The Conversation (2013) and this one (including the comments) from the MJA Insight  

Opting out takes about five minutes and can be done online using your Medicare Card and a Passport or Drivers Licence. You can find the link here

12 thoughts on “My Health Record – Why I’ve opted out

  1. I agree with all written above, just want to add, that we will be able to opt out if we wish to do so, after 15th October as well. At least it is what I was told by My Health Records when I contacted them to ask this question. So personally I intend to sit and wait for a while. Please correct me if I am wrong.

    • Tanya, thanks for your comment. Yes, we will be able to opt out if we wish to (as can people already have a My Health Record, like my husband, see the comment to Christina.) Unfortunately, the records set up cannot be deleted, but become ‘silent’. They are still available at a later time if there is a change to the legislation. A young man of my acquaintance opted out for himself. He tried to opt out on behalf of his young children, only to discover that they had MHRs already, created without his knowledge or that of his wife. They have been unable to have the records they do not want and did not ask for deleted. Scary!

    • Hi, Christina. From my reading, it seems that unless people opt out, they are are automatically in! Their record is set up by some magic process. This is one of the sneaky things that annoys me about the MHR.

      Some people, including my husband, who goes to a general practice owned by a company which gets a payment from the Health Department for recording patient information, gave permission to be ‘in’ several years ago, when it was suggested to him.

  2. Very interesting points, Maureen.

    I think it’s important to note that you can have a MHR and opt out of having certain parts of your medical history recorded through the MHR (e.g. if you don’t want your mental health records accessible). Individuals do have a certain level of control in that respect.

    In my experience, I have had a lot of difficulty gaining access to my hospital records for my specialist (despite requesting multiple times, in writing and verbally). I think there is room for improvement in this area.

    A system like this does run the risk of being a target for hackers, which is a very legitimate concern. I think individuals need to weigh up this risk against the prospect of medical professionals being able to treat them with a more comprehensive understanding of their health.

    • Thanks for commenting, Louisa. Yes, I do understand that individuals have some control over what is recorded. And I am usually a law-abiding, even a compliant individual!

      I guess one thing that worries me is the way some general practitioners do not always get diagnoses right, and do not provide suitable treatment. One example is when old people are over-medicated for conditions like hypertension and become very unwell as a result. Often their complaints are dismissed. However, the diagnosis and the medication will become part of a health record, possibly to the detriment of the person being seen by another health professional later.

      Another instance of muddle-up occurred when two sisters I know, children at the time, both hospitalised at the same time, had parts of their medical records put into the other’s files. These, also, would be subject to the MHR,

  3. How interesting Maureen.
    I have no idea if we have a similar system here in the U.K. I can link to my GP surgery and access my Medication list online and can order repeat prescriptions (once approved) which I collect from my pharmacist. I can also access times and dates of previous appointments with GP or nurse and make future appointments online, but I cannot access my medical records.

    • Hello, Sue. Linking with your own medical practitioner and the ease of ordering repeat prescriptions is really different from this draconian law which will come into effect in Australia later this year. The option to opt out is in the legislation, so I’m not really being too much of an outlaw. I just feel strongly about people’s personal information being available too widely on the internet.

      • I agree with you Maureen, especially after the incident you mention where a politician revealed information about a woman’s Centrelink information. I remember reading about it on Jennifer’s site. What’s to stop another politician or a clerk with access doing this again if it suits their purpose?

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