by Bernard Robertson-Dunn
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MEDIA RELEASE: Why is the government planning to gather all Australian’s Medical Data? … and will not be running a mass media campaign to let you know how to opt-out.

It is reported recently [1] that the Federal government will be registering everyone who doesn’t already have one for a My Health Record but has no intention of proactively informing Australians of this gross invasion of their privacy.

My Health Record is designed to store data on government servers about your medical treatment. As Mr Kelsey, the CEO of the Australian Digital Health Agency, who is responsible for running My Health Record, is quoted [2] as saying:

“My Health Record takes copies of records from other systems, EMR systems included, from hospitals, from GP software systems, from pathology and radiology systems.
It takes those copies (not original documents) and makes them easily visible to clinicians, keeping in account reports such as pathology and digital imaging display only the report itself, not the visual image.”

They will keep this data effectively forever.

In spite of what the government claims about My Health Record, you do not own the data in it.

“No document is ever actually deleted from the My Health Record system. However, an individual has the ability to remove from view any document in its entirety from their My Health Record. Individuals can subsequently restore documents they have removed from view.
An individual cannot edit any document that has been uploaded by their healthcare providers to their My Health Record. This means they cannot change or remove parts of any document uploaded by healthcare providers.” [3]

If you cannot delete or change data in My Health Record, in what sense do you own it? Let’s face it, you don’t. It is the government’s to do with as they see fit. And improving your health care is not one of those things. Matching your data with other data sets the government already holds is their stated aim.

A recent report [4] suggests that GPs and hospitals claim that My Health Record is not fit for purpose and that its use is “alarmingly low”. So not only is it highly intrusive and health carers see no use for it but the Federal government is attempting to quietly force this system on as many Australians as it possibly can.

There is no valid clinical reason why your medical data should be shared with the Federal Government. The only people who should see it are you and your health care professionals.

The government killed off real patient control over medical confidentiality, but without solving the need for a safe, clinically-usable medical record system. Now they plan to railroad everyone into giving up their medical treatment data without first asking or explaining the future risks. Perhaps they hope they can get away with it before anyone catches on – once they’ve got your data, it will be too late to get back control.

This is not informed consent; this is more like a sneaky, secretive back-door data grab.

This is no way to deal with your most sensitive personal information. It is not worth risking a breach of the essential trust between doctors and their patients for this sort of dangerous, already-obsolete Big Data train smash waiting to happen.

After spending an estimated $2 billion or so for no good purpose, the government should shut this system down and delete everything in it.

Media Contact:
Dr Bernard Robertson-Dunn
Chair Health Committee
Australian Privacy Foundation
Mobile 0411 157 113
Bernard.Robertson-Dunn@privacy.org.au

[1] Privacy groups outraged over failure to inform Aussies about a new government health record
Daily Telegraph, 25 November 2017
https://www.dailytelegraph.com.au/lifestyle/health/privacy-groups-outraged-over-failure-toinform-aussies-about-a-new-government-health-record/newsstory/5d1c7f980de28966d3ede764ae875cb6
[2] http://opengovasia.com/articles/how-the-australian-digital-health-agency-is-helping-create-aseamlessly-connected-digital-healthcare-system-for-australia
[3] https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/news-025
[4] http://www.healthcareit.com.au/article/gps-and-hospitals-claim-my-health-record-not-fitpurpose-alarmingly-low-usage-figures-are

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