My Health Records. The name suggests that they are the record of the person about whom the records are being made. You. Me. But, is this really the case?
If the records were truly ‘yours’ or ‘mine’, then why are they compulsory with a huge rigmarole to go through to get out of them known as ‘opt out’?
We operate under the premise of freedom of choice in this country. However, it has been reported that once a record has been created, even if you opt out, the data will still be kept. To have a system where it is opt-out and a record is automatically created for all people and from which data cannot be deleted even if a person opts out of the system is a matter that fundamentally violates freedom of choice and autonomy.
Why keep data if the records are voluntary and the ownership of the patient?
What are the hidden agendas here?
There certainly are benefits to the notion of a shared health record. Patient convenience, results easily available for all carers who access the record. But we need to question, what data is being stored, and why, and what data is being and will be accessed, and by whom?
In an ideal world we would understand that nobody would use the data in these records and in an ideal world we would simply consider that these records are a convenient way of having all of the information in the one place. But the reality is, that is simply not the case.
We need to question why so many big companies are getting involved in the electronic data industry.
Apple, Google and Telstra have all invested heavily in developing e-health records and/or apps so that people can access their records. Lets be honest and speak frankly here. These companies do nothing for humanitarian reasons. It’s all about profit.
- What are they, or their affiliates going to do with YOUR health data?
- Who are they selling it to, and for what?
- And, are you going to get any of the profit from the on-selling of YOUR data?
Traditionally medical records are there so that doctors can understand what is happening in a patient’s condition to help them to see the full picture. The My Health Record has a condition that patients can log in and adjust the data that is stored in their health record. This has the potential for inaccurate and incomplete data to be stored in the health record. How will that help health care professionals better take care of their patients? Inaccurate information is not only not useful, it can be dangerous.
Additionally, anyone in an institution can log in to access the e-health record, and you will not know who it was or, what they did with that information.
At present, health records are the property of the hospitals and the relevant medical practice/clinician.
Granted such a position is not trouble free, but we need to be open and honest about the My Health Record and the problems it proposes, and the real agenda(s) behind it.
I was told directly by a CEO of a major private health insurer that the reason they want the My Health Record is not for patient convenience, but because they want access to all of the aggregate data, so that they can design algorithms for the population.
I was earlier openly told by a person developing the e-health records that the reason that companies like Telstra are getting involved is so they can get access to clinical and genomic data. An area that is fraught with concern as outlined by Elizabeth Sigston.
This is about money, and big companies, not about the ease of individual health care and we need to be clear about that.
The terms and conditions of the My Health Record state that the data can be used for research and public health purposes. That means that every consultation with a doctor is part of research. Usually, when people involve themselves in research, it is a matter of very specific consent. How many people know that when they have a My Health Record that their life will be one big investigation, the results of which they will not know the answers to and for whom the profits will be going to large companies?
Furthermore, the matter of consent on so many levels aside, the reality is, that no data is actually anonymous. Data breaches occur often, and the records are not safe from being breached, and thus patient identities and health histories being discovered. This is potentially diabolical.
Additionally, what is concerning, is WHO exactly can access YOUR files?
The government states that it is passing legislation that only a court order can allow government agencies and police to access health care records, but that is a law that is a law now.
Laws can change with a change in government or public opinion and once your data is stored, it is there for anyone to use and access as defined and made available by political positions in the future.
This is deeply concerning.
I support great health records. However, as yet, I have seen no provisions and not a solid foundation about actual patient care that supports the use and widespread use of My Health Record.
It is very clear to me from the discussions and the debates, that the My Health Record, is not actually truly about our, mine or your records: it is about the vested interests of agencies and bodies that are bigger than us as individuals. Our information and our lives are to be pawns in a bigger play. And the consequences of that will affect all of us. And that just ain’t cricket. I plan to opt out.
Dr Maxine Speaks 
This is a great article, Maxine. Very clearly stated and I too have opted out of ‘my’ health record… it is a great idea which we know will be misused and abused. Interestingly when I called to opt out, the person on the phone confirmed that I already had one of these (I had naively set one up last year thinking it was for me to access all the information, not for other people) and that the data could not be erased…
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Thats exactly it Anne. Why are we not clearly being told all of the information and only told some of the bits that will get us to sign up for it?!
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Because if we were told the whole truth, we would not sign up!
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hahahaha so true!!!!
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This all needs to be openly said Maxine thank you.
I previously had a record and cannot now opt out – but I can cancel the record. What does that mean on the ground? That ‘my’ health data (the cancelled record!) can still be accessed for the remainder of my life plus 30 years – or if the date of my passing from this life is not known – then for 130 years from the date of my birth.
Yes you read correctly.
And all now entirely without, and in fact against my consent.
Opt out before a record is created or it is out of your hands. As you say a violation of freedom and autonomy.
This is a fundamental cleverly disguised slide away from our very societal bedrock there is much to loose here and we collectively may consider this a crucial moment to speak up.
Thank you again for the practical clarity here.
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Its pretty bad Kate. It can be accessed until 30 years after you die. That certainly has nothing to do with YOUR health care.
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If they retain a referrable medical history you cannot possibly get an unbiased 2nd opinion.
As patients we have a short time at the doctors office minutes. The time it will take to scan through what will auto include prescriptions, tests, doctor appointments to get to required data its worthless.
“Genetic relative” is defined in the Act, yet does not relate to any clause within the Act itself. When you consider Clause 98 enables delegation to Ministers for undefined purposes this is not a good sign. It was Dr Mengels dream.
Claims by Hunt that Centrelink won’t get the info are rubbish. When E-Health was launched privacy screens clearly showed DHS of which we know Centrelink is a section was uploading the data. E-Health had in its privacy Act the ability for storing records on Carers, Nurses etc that patients referred to in eg a doctors office if noted without the Carers, Nurses permission. Ex Health Minister Ley is in public interview when pushing E-Health stated an intention to circulate the medical info extracted to anyone they could including gyms.
Even before we consider that LNP has been privatising many sections of the public service around Health (eg NDIS Serco), DHS itself has appalling history of privacy breaches by its sections employees. Access to the information will be going to various places by upload & to enable use for patient. Who will be calibrating the internet security of these entities computers? Who be security checking their personnel?
In the case of an emergency do you want your first responder relying on a good internet connection day or a fast telephone call response from DHS? Do you want them spending hours wading through heaps of reports to arrive at the conclusion you have an allergy that causes swelling of your wind pipe.
Nothing but nothing is quicker than medical id bracelets, necklaces. Nothing but nothing is faster than having on your mobile “ICE” (in case of emergency) as your NOK Contact.
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Thanks for your comment Tracey. Its correct re the second opinion. Great point! And, lets not be mistaken, this would be a policy ALL governments equally would pursue were it not for public outcry, LNP, Labor equally so. Private agendas have been pushing for this health record.
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So well said Maxine. What could be useful and truly supported to all is twisted and changed by agendas and philosophies that have nothing to do with our true health. Its important we all read situations in life, past the cover, otherwise our yearning for a better days can be exploited at our expense. With the right controls and privacy details, a system like this could be beneficial in my view, but this isn’t it.
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Well said Joseph.
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I can understand the theory of allowing individuals to make sure their medical records are accurate via access to them, but only through another medical regulatory body, because there are obviously inherent risks if the records are changed in a way that do not directly reflect the real condition of the patient. Now, as for the ‘My Health Records’ option, it seems obvious that the access to these records (and the big names like Google and Apple that are getting into this game) is being used to further profits via directed advertising, marketing schemes, etc. that are most likely tied into the pharmaceutical industry and do not necessarily consider the patients best interests, but are merely trying to capitalise on the access of this data. Our medical records are personal and I would certainly opt out of this program because of the reasons stated above and as Dr. Maxine has stated, the sanctity of them being violated by an automatic recording without consent.
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