[LINK] opting out of the e-health record

Roger Clarke Roger.Clarke at xamax.com.au
Thu Aug 3 14:12:20 AEST 2017

At 7:36 AM +0930 3/8/17, Brenda Aynsley wrote:
>Morning linkers
>I read in itnews this morning:
>"From next year every Australian will get an e-health record <https://www.itnews.com.au/news/every-australian-will-now-get-an-automatic-e-health-record-461072>, unless they explicitly remove their consent."
>Could anyone advise me and others how one might do this?
>I fear its a chicken and egg situation, folks will need to create some record with the Australian government in order to then opt out of the 'services' offered by the government sigh.

This has been discussed on multiple occasions on the privacy and APF Health Ctee lists.  Here's a summary provided by two of the active participants on the question.  Interpolations in square brackets are by me.

1.  Arrangements During the Pilots

I have no idea of what the procedure will be in the future, but below is my
experience of opting-out during the 2016 opt-out trials.

I received a letter from Department of Health to say "You are getting a My
Health Record!" The letter contained the following paragraph:

"What if you don't want one?  If you don't want a My Health Record, you need
to tell us.  You can tell us from 4 April 2016 to 27 May 2016* by going to
myhealthrecord.gov.au, calling 1800 723 471 or visiting a Medicare Service
Centre.  Have your Medicare card and other identification ready."

*This limited period in which to opt out was prescribed by the My Health
Records (Opt-out Trials) Rule 2016

I first attempted to use the website to opt out. There was an online
verification process asking for driver's licence, passport or immigration
card number.  

I decided to ring instead and I was not asked for these numbers. I was asked
for my name, address, date of birth and Medicare number.
I was also asked my reason for opting out.  They had a list of reasons you
could choose from.  From my scrawled notes, things like - "no use", "no
benefit to me", "lack of privacy".

A week later I received a letter confirming that I had opted out.

[What was actually done is unknown, as is whether (a) the denial of consent was ignored and a record created anyway, or (b) a skeleton record was created, or (c) an entry was made in a separate database to record the denial, or (d) the separate database was later conveniently lost or not integrated, or (e) the opt-out feature was never implemented, or (f) they reneged and withdrew the opt-out feature.]

2.  Arrangements as they extend the Pilots

In the explanatory memorandum to the current legislation it says "In an
opt-out system, healthcare recipients would automatically be registered
for a My Health Record without the need to apply or give consent, unless
they elect to opt-out."

In other words, if the government says that a person can withdraw their
consent to be registered for a MyHR, they are stretching the truth.
Consent it not needed nor given if a person is automatically registered.

[It's also been mentioned on occasions that a record *is* created, and the opt-out can't be exercised until after it's created, and all that an opt-out does is suppress additions to the record, or accesses to the record (or maybe just access to the record by the individual to whom it relates?!  After all that's the approach used by Google and Facebook, so it *must* be right).

[I was deeply involved throughout the 'stakeholder engagement' process for the PCEHR.  It was a complete debacle, with 'professional' 'engagement officers' used to keep advocates away from the design team.  The executives were totally untrustworthy.  Even the lead clinician, who *I* thought was untrustworthy (but who other people seemed to accept as if he was one of the good guys) eventually left - because he discovered that the other execs were untrustworthy ...]

Roger Clarke                                 http://www.rogerclarke.com/
Xamax Consultancy Pty Ltd      78 Sidaway St, Chapman ACT 2611 AUSTRALIA
Tel: +61 2 6288 6916                        http://about.me/roger.clarke
mailto:Roger.Clarke at xamax.com.au                http://www.xamax.com.au/ 

Visiting Professor in the Faculty of Law            University of N.S.W.
Visiting Professor in Computer Science    Australian National University

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