This appeared last week:
How to opt out of Australia's e-health record scheme
Get in within three months.
The federal government has released guidance on how Australians will be able opt out of having a personal electronic health record created under the country's My Health Record scheme.
It ends a period of uncertainty for those who have expressed concern about privacy and data sharing in the scheme.
A policy change from opt-in to opt-out e-health records was first mulled in 2015 when the government starting trialling the automatic creation of electronic health records for individuals.
The trials stemmed from poor adoption of e-health records under the formerly-named PCEHR voluntary scheme.
The federal government confirmed it would officially move into a full-scale rollout of opt-out records in its May 2017 budget, following support from the country's states and territories. The underlying strategy was approved in August.
But until now it had not provided clear advice on how individuals could request not to be involved in the scheme.
It had only offered the ability to register on the My Health Record website to receive updates about the process and the forthcoming opt-out period.
The department has now made public an online resource explaining how individuals will be able to opt out of the process in response to a freedom of information application. The resource had previously been blocked to public viewing.
The resource - accessible here - confirms there will only be a three-month window for individuals to request to be left out of the scheme.
The start date for this window has not yet been announced. DHS says it will be revealed early this year.
More here at this link:
The official page with the details is here:
Opt-out for My Health Record 011-04150000
On this Page:
Opt-out My Health Records
From mid 2018 every Australian will receive a My Health Record.
The date has not been announced.
Until then, the My Health Record is currently an opt-in system for both individuals and healthcare providers.
How to opt-out
An online opt-out portal will be available for individuals and families when the opt-out period commences. It is not available now.
The My Health Record enquiry line will offer an opt-out service as well.
Individuals wanting to opt-out
Currently, there is no ‘wait list’ for individuals to opt out.
The national opt-out period and timing will be announced early next year. Date to be confirmed.
Individuals can get a generic email about the opt out measure: go to the My Health Record website (see Resources page for a link) and scroll down to the Budget announcement information and enter their email address.
Service Officers should advise individuals to visit the My Health Record website (see Resources page for a link) for up-to-date information about the My Health Record system.
Individuals who don’t need to opt-out
Individuals don’t need to opt out if they:
- opted out of getting a record during the 2016 trials
- cancelled a record
Individuals who currently have a record will not be able to opt out. They must follow the existing cancellation procedure. See Cancel an individual’s My Health Record.
Opting out newborn children
Individuals can only opt out of getting a record for themselves and their children after the opt-out period commences (date has not been announced).
Parents who chose not to get a record for their newborn when submitting registration information before the opt-out period will still have to opt their child out.
Caller concerns
The Resources page contains questions and answers to help Service Officers assist individuals with basic privacy questions and general opt out questions.
Service Officers should warm transfer providers to Tier 2 My Health Record provider line, see My Health Record.
Historical opt-out trial information
An opt-out model of participation for the My Health Record system trialled in North Queensland and Nepean Blue Mountain regions. The trial was completed in 2016.
We do not have information about the outcomes of the trial.
Service Officers should advise individuals to visit the My Health Record website (see Resources page for a link) for up-to-date information about the My Health Record system.
- questions and answers about My Health Record privacy concerns
- letters that were sent during the mail out
- links to the My Health Record website
Cancellation of an individual’s bulk created My Health Record
Individuals who had a My Health Record created for them as part of the opt-out trial can cancel their record at any time, however before they can cancel their record, they must link to their record.
Opt-out trial participants are able to cancel their My Health Record themselves by linking it to their existing MyGov account, entering the record and selecting Cancel My Health Record. See the Procedure Help Individual or parental authorised representative to cancel a My Health Record.
Service Officers can cancel a My Health Record on behalf of an opt-out trial participant through the Admin Portal. See Cancel an individual’s bulk created My Health Record table in Cancel an individual’s My Health Record.
The Resources page contains general opt out information questions and answers, privacy concerns questions and answers, historical opt out trial 2016 information including the letters that were sent during the initial mail out and the transaction reference number and a link to the My Health Record website.
Related links
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The resources page is basically a FAQ and is also worth browsing. One can only assume the information provided on the official web site is accurate.One has to feel. reading through all this that there is a gritty determination on the part of the bureaucrats to make it as hard as possible to opt out!
There is also a major question to be answered as to just why you can't have your record deleted once and for all. The only reason I can imagine is Government pigheadedness! Just what right does the Guvmint have to say you can't delete your data from places we know they have a less than perfect record on security? I wonder why no-one has made a fuss about this previously?
My view is that there need to be some hard questions asked of the ADHA as to why this non-deletion rule exists. The myHR of itself contains no primary data so nothing would be lost other than user-contributed data the user presumably wants shot of!
So, if you value your privacy and want to stay out of this scheme read carefully and sign up to be alerted when the opt-out window opens.
Best of luck!
David.
24 comments:
From mid 2018 every Australian will receive a My Health Record.
Reading this statement I understand a record must first be created. If the record is not deleted when the indervidual outs our then the only one who cannot control the record is the citizen for which the record is for (in those cases where matching errors do not occur).
What do you mean? I don't follow?
David.
This is only the beginning. Once every citizen is press ganged into the database, all healthcare workers will be forced to use it and all software vendors will be forced to include integration into it via their software. Stalin must be proud
As usual, the government is economical with the truth.
It is more correct to say that a person will be registered for a record. If they don't create a myGov account and link their myhr to it they can't access it or get any notifications etc. If they don't go and see a GP (e.g.) and get them to be their nominated service provider, then no Shared Health Summary can be uploaded.
All that will happen is that Medicare billing data (very little clinical information, all it says is that you visited someone, not why), PBS data (not much use without context) and discharge summaries (not much use if they don't contain full data such as test results/opinions etc) will accumulate in the myhr, which won't be much use to anyone. Not that a myhr with other data is much use anyway.
I have no idea what the commenter at 4:49 PM was trying to say.
Come May 2018 a record will be created for every Australian
1. Once a record is created it is never deleted.
2. So even if you opt out your record will remain
3. Collecting automatically uploaded information
4. As you have opted out you cannot access the record.
5. There is no reason others cannot access it
6. There are incidence where health information has been posted to the wrong record
7. There is a potential that information you wish no one to be privy to will appear in your record, as you have opted out you will not know this or be able to hide that information
You can opt out but you can never leave.
@6:04pm. You make a compelling case for never going near the myHR!
David.
Unfortunately as 6:04 points out, it makes no difference if you try and distance yourself the Government will create one anyway. There is something very wrong going on here. Reminds me of that caredata parody only this time the end result maybe very different and many Australians will find their identifiable and personal information being sold to the highest bidder either on the open market or the dark web.
I already have a My Health Record. I registered for it a year ago. I have now decided I don't want it. I read the web site to see how I could cancel My Health Record. The instructions were clear. I followed them. I ended up in a recurring nonsensical loop. I wasted my time. I could not delete my record even though the instructions I followed said I could. I rang the call centre number but it left me in the message loop - "we will be with you shortly". 45 minutes later - still getting the message "we are busy, we will be with you shortly". I hung up. Surely I can cancel my record today or am I trapped forever?
"Surely I can cancel my record today or am I trapped forever?"
No you cannot cancel your registration, only deactivate your record. It will not store any more information, but if you decide to re-activate it, it will pick up where you left off.
Make sense? Not to me it doesn't.
IMHO, there are two options if you are worried bout what the government might do with your data.
1. Opt out in which case you will not be pre-registered and no record wil be created.
2. Register, take control and make sure that there is nothing of any use in it - which is what I've done, but I know what I'm doing.
Opt out in which case you will not be pre-registered and no record wil be created.
Bernard I am not convinced that is the case. As with a previous post I believe the ADHA will create the record regardless and then you can opt out. The system has not demonstrated any real smarts and I doubt they have built anything reliable enough to enable handling a list of records not to create.
I wonder what the ADHA will do after optout? There will be little need for them to go on tour promoting it and they are irrelevant in all other areas of digital health and any attempt to control the standards or software market will fail dismally. I wonder if it a year the country will come to realise the MyHR is a bit boring and medicine is the domain of trained practitioners who care.
re "no record will be created"
This is what it says in the Privacy Policy on myhealthrecord.gov.au
"Registration for a My Health Record in the 2016 Opt-Out Trials
In 2016 trials of opt-out participation occurred in Northern Queensland the Nepean Blue Mountains area. My Health Records were created for everyone with a Medicare address in these areas, unless they indicated they did not want a My Health Record.
My Health Records were not created for people who indicated they did not want one. In the future no My Health Record will be automatically created for people who indicated they did not want a My Health Record as part of the 2016 opt-out trials."
My understanding is that this is the same policy that will apply for full opt-out.
I thought that in the announcement that DHS would be setting up a portal for people who didn't want a myGov account to opt-out that it also said that a record would not be created, but I can't find it quickly.
Perhaps you are correct and this statement ‘From mid 2018 every Australian will receive a My Health Record.’ is simply missing the ‘unless they chose not to’
Perhaps the ADHA could clarify and release some technical insights into how those opting out do not have a record created and what happens if information is sent to the MyHR that there is no record account to file it in.
@ 7:30 AM. Good suggestion although I hold little hope the ADHA will publish such transparency. I checked their website. Other than a set of new specifications I could not find anything. It does appear that CDA is still the investment of choice
Agree the Minister needs to clear this up. The workflow for the Minister to trigger cop out states this
Minister makes Rules that apply opt-out model nationally (to begin on a date to be prescribed)
option 1 - Minister makes notifiable instrument before Sep 2018 prescribing date Part 3 of Rules commences – opt out begins on that date
Option 2 - If Minister does not make notifiable instrument by 1 Sep 2018, opt-out period begins on 2 Sep 2018
goes to - Opt-out period begins
3 months
Opt-out period ends
My Health Records created for all eligible individuals who did not opt-out
http://www.health.gov.au/internet/main/publishing.nsf/Content/0E1126442C4BF6F0CA25820F000501A4/$File/optout.txt
The senate committee was told this in October 2017 - https://www.itnews.com.au/news/why-australians-wont-use-mygov-to-opt-out-of-e-health-records-474785
Individuals that decide to opt-out of the system after this period won’t have their e-health record deleted, rather cancelled records will be archived and made inaccessible to the individual or healthcare providers.
The Department of Health’s special advisor on strategic health systems and information management Paul Madden told senate estimates in late May that this was to ensure that records could be easily restored if an individual was to change their mind.
re "Perhaps the ADHA could clarify and release some technical insights into how those opting out do not have a record created and what happens if information is sent to the MyHR that there is no record account to file it in. "
AFAIK, DHS will be creating a portal where people will go, identify themselves and opt-out.
The obvious thing is for DHS, who own the Medicare number which will be used (as is now) to register people for a myhr, to flag the medicare number as "opt-out" in which case the myhr registration process will ignore it and not register the number.
It is worth noting that DHS can't yet operate its opt-out portal because there will need to be legislation to support it. The official page under Background Resources says so.
My guess is that without the legislation, the default is that data on all the people who want to opt-out will need to be retained and archived. Considering the type of person who will want to opt-out, they won't be happy to be so identified in perpetuity.
IANAL, but I believe that specific legislation can over-ride the archives act and permit this data to be deleted.
"The Department of Health’s special advisor on strategic health systems and information management Paul Madden told senate estimates in late May that this was to ensure that records could be easily restored if an individual was to change their mind."
Who is Mr Madden (now late of the Department)to help us make up our mind if we want out for ever?
If someone wants out it should just be honoured and the record permanently deleted - no ifs or buts !!!!!
David,
...Paul Madden told senate estimates in late May that this was to ensure that records could be easily restored if an individual was to change their mind.
So why keep the record for at least 30 years after they die? In case they come back to life and want their MyHR restored?
didn't think it through, did they.....
@7:21PM I tried to deactivate my record. It's not possible!
@9:36 AM Bernard said "... the DHS who own the Medicare number which will be uzed (as is now) to register people .. "
Excuse me! I thought the IHI number was being used! It was developed and issue to everyone at great expense. The justification they gave for using the IHI was because the Medicare database was too inaccurate and riddled with duplicate numbers and dead people as to render it inappropriate for the PCEHR, MY HR!
My understanding is that the IHI was based upon Medicare data.
Anyone wanting to opt-out won't know their IHI, so will have to use their Medicare number.
Some years ago they wanted to replace the Medicare card with the Human Service Access Card for just the reasons you state, but they stuffed that up as well.
Now even this information has disappeared..
Opt-out for My Health Record 011-04150000
http://operational.humanservices.gov.au/public/Pages/your-health/011-04150000-01.html
"This document outlines key information on the My Health Record opt-out record.
This procedure is no longer current and will be removed from the Operational Blueprint. If you have this procedure bookmarked, you will need to delete it from your favourites. This procedure will be removed completely in approximately one month. Contact Operational.Blueprint to request historical content."
@8:51PM March 30. That would be a case of removing everything in preparation for ADHA specific minimal viable information. Somewhere hidden deep within the thorny misinformation, prepare participants stories, power points and misguided beliefs will be new material. Probably produced by the same people who brought us PDS and small print.
I am guessing this indicates the Ministers office has all the approvals and signatures to move to opt out. My money in that 6-8 weeks and the MyHR crashes.
Well if the rumour that the ADHA infrastructure was down for a few days because of a power issue is true (that is just gob-smacking on so many levels) then the Minister would have to eithe tissue it by carrier pigeon of fax it, as Tim has a irrational reaction to faxes we are probably safe.
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