Quote Of The Year

Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Tuesday, October 23, 2018

Commentators and Journalists Weigh In On The MyHR Debate And Related Matters. Lots Of Interesting Perspectives - Week 14.

Note: I have excluded (or marked out) any commentary taking significant  funding from the Agency or the Department of Health on all this to avoid what amounts to paid propaganda. (e.g. CHF, RACGP, AMA, National Rural Health Alliance etc. where they were simply putting the ADHA line – viz. that the myHR is a wonderfully useful clinical development that will save huge numbers of lives at no risk to anyone – which is plainly untrue) (This signifies probable ADHA Propaganda)
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Australians made over 19K privacy principle enquiries in 2017-18

2,947 privacy complaints were also received by the Office of the Australian Information Commissioner.
By Asha McLean | October 19, 2018 -- 05:34 GMT (16:34 AEDT) | Topic: Security
The Office of the Australian Information Commissioner (OAIC) responded to a total of 19,407 privacy enquiries in 2017-18, with the most common query over the use and disclosure of an individual's personal information.
Of the total privacy principle enquiries, 14,928 were made via phone, 4,452 were received in writing, and 27 were made in person, the OAIC's Annual Report [PDF] has revealed.
1,560 enquiries were made regarding the use or disclosure of personal information; 1,351 related to the access to personal information; 991 on the general collection of personal information; and 882 on the security of personal information obtained.
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Committee recommends better teen privacy for MHR following calls by RACGP

Doug Hendrie 19/10/2018 2:27:06 PM
The Senate committee investigating My Health Record has recommended greater privacy protection for teenagers aged between 14 and 17.
Can teens’ health data privacy be better protected?
Dr Nathan Pinskier has been clear on the issue of teenagers’ data.
Last month, the immediate past Chair of the RACGP Expert Committee – Practice Technology and Management told the Community Affairs References Committee that changes should be made to prevent parents automatically having access to their teenager’s sensitive health data.
A key recommendation in the committee report released yesterday is that the privacy of teenagers aged 14–17 be protected by default unless they expressly request that a parent can view their data.
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Senate inquiry recommends locking down My Health Record by default

A comprehensive review of Australia's centralised digital health record has recommended extending the opt-out period by another 12 months while privacy controls are significantly tightened.
By Stilgherrian | October 18, 2018 -- 06:10 GMT (17:10 AEDT) | Topic: Security
The Senate inquiry into the My Health Record system has called for access controls to be applied by default, with individuals having to choose to remove access codes themselves, and for the current opt-out period to be extended for a further 12 months.
It has also called for stronger restrictions on using My Health Record data for secondary uses, commercial purposes, for employment or insurance purposes, or to enable the government to recoup revenue.
The report by the Senate Community Affairs References Committee was tabled in the Senate on Thursday by the committee chair, Senator Rachel Siewert of the Australian Greens. The inquiry received 118 public submissions.
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Children need more My Health Record privacy, says inquiry

It has called for parent access to be revoked by default when children turn 14
19th October 2018
Allowing parents to access their children’s My Health Record even after the child turns 14 may be putting the safety of young patients at risk, a Senate inquiry has concluded.
The inquiry has spent two months examining the billion-dollar system as it moves to a compulsory opt-in model.
More than two million children and adolescents already have records and the number will increase dramatically as files are uploaded next month.
Doctors have been concerned that youngsters will be bamboozled by the process for banning their parents from accessing their files, which requires them to go through the My Gov website.
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19 October 2018

Senate MHR report echoes doctors’ concerns

Posted by Julie Lambert
A Senate committee has called for the My Health Record roll-out to be put on ice for 12 months, to fix security concerns, tighten access controls and ensure patients properly understand their options.
The Senate Community Affairs References Committee’s report criticised the Australian Digital Health Agency’s information strategy, saying it had failed to give people enough information to make informed choices about the planned opt-out system.
The committee’s recommendations chime with many doctors’ concerns over the current MHR design regarding security and patient awareness.
RACGP President Dr Harry Nespolon said the problems had arisen due to the shift from an opt-in system to opt-out without adequate attention to safeguards.
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Opt out of My Health Record before 15 November

18 October 2018
You only have until 15 November 2018 to opt out of My Health Record.
My Health Record is an online summary of your key health information. This year, you will automatically get a My Health Record unless you opt-out.
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.
Up until recently, the opt-out portal was not accessible for people who are blind or have low vision. The accessibility has now been improved including the removal of CAPTCHA.
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Thu 18th Oct 2018

My Health Record: Time for Government to Opt Out

The report released today of the Senate Inquiry into My Health Record (MHR) reveals a Government intent on collecting data on patients without their knowledge, without knowing how or how well the data will be used including for commercial purposes, and without telling Australians about the many problems that this Record has. We welcome the recommendation that the Opt Out policy (which forces an MHR on people without telling them) be deferred for a further twelve months whilst the many issues raised are addressed.
These are some of those issues which the Government has failed to address.
  • At least a third of Australians are not aware of the scheme and will therefore have their private data uploaded without their consent
  • Most health care providers have not signed up to MHR which means most patients cannot benefit from their involvement with these providers
  • Most specialists are not part of the scheme and there has been no direct attempt by Government to involve them personally
  • The Government has not addressed the problems relating to many vulnerable groups including
    • Adolescents
    • Victims of family violence
    • Sex workers
    • Those with mental illnesses
    • Those who cannot themselves control their own record because of lack of skills, language and cultural barriers, lack of money, lack of good relationship with a regular supportive GP
With all of the above issues to address, the suggestion that the security of the data is ‘world class’ is dubious at best. The Government has not yet implemented its framework for use of the data for ‘research’ and other purposes. For three weeks the Government rejected calls for better controls over data access by police and welfare departments until accepting better legislation was required. This is a clear indication the Government cannot be trusted to do the right thing.
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Greg Hunt sticks to timing on My Health

  • 11:00PM October 18, 2018
Health Minister Greg Hunt will not extend the opt-out ­period for the My Health Rec­ord scheme despite a Senate committee yesterday declaring more time was needed to ­address privacy and security concerns.
Mr Hunt has already extended the opt-out period by a month, to November 15, and introduced legislative amendments to enforce the policy surrounding law enforcement access to medical records.
But the committee — whose inquiry Mr Hunt has previously labelled a stunt — yesterday made a series of recommendations for refinement and proposed the opt-out ­period be extended by another 12 months.
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myGov portal can be used by abusive partners to track down victims, Government warns

Updated 18 October, 2018  at 8:01am
Parents fleeing domestic violence are being urged to deactivate their children's myGov accounts, amid concerns abusive partners can use the portal to discover where spouses and children are living.
An email circulated by staff at the Queensland Department of Child Safety, Youth and Women has warned that a group of doctors had raised concerns about abusive partners being able to access the updated address details of their child through the Federal Government's myGov portal.

Family violence support services:

  • 1800 Respect national helpline 1800 737 732
  • Women's Crisis Line 1800 811 811
  • Men's Referral Service 1300 766 491
  • Lifeline (24 hour crisis line) 131 114
  • Relationships Australia 1300 364 277
"With this platform there is no way to protect addresses at this stage," the email said.
"It is encouraged for parents fleeing violence to deactivate their account to reduce the ability to track their new address."
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My Health Record inquiry backs away from return to opt-in

By Julian Bajkowski on Oct 18, 2018 10:43PM

But has a slew of security improvements.

Australia’s grinding, decade-long and always controversial journey towards national adoption of electronic health and medical records is set to maintain its current ‘opt-out’ stance after a key parliamentary committee backed away from a return to voluntary adoption.
The Senate’s Community Affairs References Committee on Thursday delivered its final report into the My Health Record system, recommending a slew of improvements but pulling up short of flipping the roll-out back to the previous opt-in model.
The report represents a crucial truce in the ongoing political and social debate surrounding privacy and access elements of the troubled scheme because it stipulates far tougher default access controls over the presumption that citizens should only get an eHealth record if they proactively ask for one.
Medical and care sector stakeholders had feared that recommendations to flip the national eHealth scheme back to opt-in would again derail the potential for vital critical mass to be garnered to make the system feasible at a mainstream level.
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Major changes to My Health Record laws needed to safeguard Australians, Senate inquiry finds

By Dana McCauley
18 October 2018 — 10:00pm
The deadline to opt-out of the federal government's controversial My Health Record system should be extended by 12 months and legislation substantially rewritten to safeguard patients' safety and privacy, a Senate inquiry has found.
The Labor-led inquiry, which released its findings on Thursday, found that Health Minister Greg Hunt's implementation of an opt-out model had meant that “an unreasonable compromise may have been struck" between the system's utility and patient rights.
Opposition health spokeswoman Catherine King renewed Labor's call for the government to suspend the My Health Record rollout and "commission an independent review of privacy provisions".
Labor has already promised to extend the opt-out period by a year beyond the November 15 deadline if the party wins government.
But Health Minister Hunt refused to further extend the opt-out following the Senate report's release.
“The opt-out date has already been extended and the opt-outs are travelling at a significantly lower rate than expected," a spokesperson for Minister Hunt said. "We will not be extending it further as it would not be appropriate to delay the benefits to patients."
The spokesperson added that the government would "review and respond to other items in the report".
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Delay roll out of My Health Record for 12 months while privacy and safety flaws are fixed: Senate

Sue Dunlevy, National Health Reporter, News Corp Australia Network
18 October, 2018
HEALTH Minister Greg Hunt has refused a Senate Committee’s call to extend the opt-out period for the controversial $2 billion My Health Record by 12 months while major new privacy protections are included.
The Senate committee has expressed grave concerns the record in its current state could allow violent partners to track down domestic violence victims in hiding and wants default open access settings changed.
However, Health Minister Greg Hunt said he would not extend the opt out period.
“The opt-out date has already been extended and the opt-outs are travelling at a significantly lower rate than expected,” a spokeswoman for Mr Hunt said.
“We will not be extending it further as it would not be appropriate to delay the benefits to patients.
“The Government will review and respond to other items in the report”.
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Teenagers, E-Health and Privacy

Here at Manly Village Medical we respect and support our teenage patients’ right to privacy. We want to ensure teenagers are empowered to make choices about privacy around their healthcare. As GPs, we have a duty of care to ensure you have access to information which will inform you about choices relating to My Health Record.
My Health Record is an Australia-wide Electronic Health Record. The key idea around the record is that it enables your health information to be shared with all health professionals who are directly involved in your healthcare. https://www.myhealthrecord.gov.au/for-you-your-family
The Australian Federal government will automatically create and activate an My Health Record for you from 18 November 2018. For teenagers and young adults, it is important to know, if you are on your mum or dad’s, guardian’s or sibling’s medicare card, information uploaded to your My Health Record will be visible to whoever signs onto the medicare account. In other words, other family members have the potential to read information uploaded to your record.
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Australians could end up in a Big Brother system under new online identity program

Tory Shepherd, State Editor, The Advertiser
October 18, 2018 12:30am
AUSTRALIANS are in danger of ending up in a Chinese-style “social credit” scheme thanks to new Government online identities, a report out today warns.
The Federal Government is set to roll out trials of the IDs – which have been likened to the ill-fated Australia Card – this month.
Through the $92.4 million GovPass scheme, people can opt to set up myGovID accounts.
The accounts, which will rely on facial recognition technology, will provide people access to services including Centrelink, car registration and the Australian Taxation Office.
……
The Australian scheme is intended to save the Government money and make it faster and easier to access services.
But today’s Australian Strategic Policy Institute report says the public is “largely unaware” of the controversial scheme, and that it could face bigger opposition than the MyHealth record, which sparked fears of private information being exposed.
There are not enough safeguards in the scheme, author Fergus Hanson writes in his report, Preventing Another Australia Card Fail .
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DTA attacks China-style social credit claims about Govpass digital identity

By Julian Bajkowski on Oct 18, 2018 7:03PM

Rubbishes report from defence thinktank ASPI.

The Digital Transformation Agency is at public loggerheads with one of Australia’s most influential national security policy think tanks, the Australian Strategic Policy Institute, over claims its digital identity rollout needs strict legislation to stop a Chinese-style social credit system.
Yep, you read that right.
The DTA on Thursday hit back hard at an analysis brief penned by the head of ASPI’s international cyber policy centre, Fergus Hanson, which also bleakly warned the government risks a repeat of the Australia Card and Access Card flops because of poor public education and understanding of the schemes.
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Time running out to decide on My Health Record

17 Oct 2018, 1:29 p.m.
AUSTRALIANS have less than a month to decide who can access their health records.
MY HEALTH RECORD: Opt-out period expires on November 15.
The opt-out period for My Health Record will expire on November 15.
Those who do not opt out will automatically have a digital record created for them on a national data base accessible by health professionals including GPs, specialists and pharmacists.
While various health experts say the database could save lives, many Australians have fears about the security of data while others believe the system should have remained as opt-in.
Australian Patients Association executive director strategy, Michael Riley, said it was important that patients and their families did not get caught up in the emotive arguments being put forward by groups and individuals that were either for or against Australians maintaining their My Health Record.
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My Health Record: Opt Out or Stay In?

Chris Kelly  ADHA Propaganda

A quick internet search will reveal that My Health Record is a contentious issue right now. Various objections are spurted out while others praise the idea – with no proper debate between either side.

To combat the current media mishmash, here’s our comprehensive neutral overview of the viability of My Health Record:

Privacy

According to Timothy Pilgrim PSM, former Australian Information and Privacy Commissioner at the Office of the Australian Information Commissioner (OAIC), “even organisations with great information security can fall victim to a data breach, due to the rapid evolution of data security threats and the difficulty of removing the risk of human error in large and complex organisations.” Which means, if you don’t want to risk your personal information being hacked, you should remove yourself from the internet altogether – because that’s the only surefire way to fully protect your personal information. In all seriousness, reverting to the age before the internet is not going to happen. So, the next best option is to minimise the risks and follow proper procedures for when breaches occur. My Health Record does this in various ways.
According to My Health Records Act 2012, only “healthcare providers” – who are registered with the system and are involved in your care – can gain access to your health records. This may include health care providers such as your General Practitioner (GP), pharmacies, pathology labs, hospitals, specialists, and allied health professionals. You can also allow – to your discretion – spouses, friends or family members to access your records.
Note: The authors are part of a lifestyle promotion company….
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How to corrode your social licence in nine easy steps

October 17, 2018, Anna Johnston
A lesson from the Australian Government.
Privacy missteps are eroding the public’s trust in the Government’s ability to achieve ambitious digital projects, and risking trust in the very notion of government itself.
The corrosive effects of privacy debacles are cumulative, with hashtag-worthy government disasters like #Censusfail colliding in public consciousness with the re-identification of MBS/PBS data, bumping up against the cruelty of #Robodebt and the stupidity of declaring a war on maths, and flaring into outrage at a Minister’s unpunished disclosure of a welfare recipient’s personal information to a journalist.
Each privacy catastrophe eats away at the public’s trust in successive government projects, before they even get off the ground. Reasons people have given for opting out of the My Health Record system have included fear of misuse by the government of the day, citing both Robodebt and the weaponisation of Centrelink records by Minister Tudge.  And then in turn, mistrust in My Health Record has been referenced in multiple submissions to PM&C’s Issues Paper on the proposed Data Sharing & Release Bill, as a way of illustrating the dangers of proceeding without caution and due respect for privacy and security.
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Why seniors are encouraged to be connected online

17th Oct 2018 9:00 AM | Updated: 10:11 AM
A GOVERNMENT-funded initiative called Be Connected is being rolled out nationally for the first time to help "digitally excluded" individuals get online.
The program is being administered with the help of 1800 volunteer partners across Australia, including the Gladstone City Library, not-for-profit organisation Welcoming Intercultural Neighbours, and National Seniors Gladstone.
Welcoming Intercultural Neighbours executive officer Natalia Muszkat said Be Connected was aimed at allowing older-generation people to become competent online users.
"Think about My Health Record or Centrelink - everything is online and then you have a big group of people who don't know how to do it," Ms Muszkat said.
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Game changer: Creator of FHIR writes about approaching critical mass and a growing data sharing revolution

Grahame Grieve | 17 Oct 2018
HL7 is close to publishing the fourth milestone release of the FHIR standard at a time of increasing uptake that the US Office of the National Coordinator for Health IT recently said could soon approach critical mass. These are exciting times.
In a blog post, ONC's Steven Posnack and Wes Barker wrote that the US "might be at a turning point when it comes to the adoption and implementation" of HL7's FHIR standard, supercharged no doubt by the integration of the standard by mammoth companies such as Apple.
But there is still much to be done both here and internationally to get health systems sharing patient information and fuelling quality care – which is what our work is all about.
FHIR contains the foundation content for exchanging data about all parts of the healthcare process. It supports exchanging patient clinical summary, care plan management, medication management, diagnostic reporting, as well as clinical decision support, administration, financial management, and even clinical trial administration.
From the beginning, the mission of the FHIR community – which I am privileged to lead – has been to change the way healthcare is practiced by providing the technical infrastructure that allows applications to connect in new ways, ways that erode the barriers to improved care. We’ve seen other industries disrupted by the combination of technologies and scalability that the web offers, and we want to bring that to health.
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My Health Record privacy amendments 'woefully inadequate': Labor

An Australian senate committee has recommended passing the My Health Records Amendment (Strengthening Privacy) Bill 2018, but Labor senators have lashed out at the government's "stubborn refusal" to fix further problems.
By Stilgherrian | October 14, 2018 -- 23:08 GMT (10:08 AEDT) | Topic: Security
After carefully reading and considering 31 public submissions on the My Health Record privacy amendments, as well as three further documents from community health organisations, the Senate Community Affairs Legislation Committee's report on its inquiry has made just one solitary recommendation.
"The committee recommends the Bill be passed," it reads.
The committee didn't come up with a single suggested improvement to the hastily written Bill, at least according to the majority view. Solid effort, although to be fair there's a second, more comprehensive inquiry under way.
The Bill in question is the My Health Records Amendment (Strengthening Privacy) Bill 2018, which is intended to allay the privacy concerns which have lead to 900,000 Australians opting out of the centralised digital health records system.
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Australians’ information privacy is protected by Claytons policing

  • By Michael Connory
  • 11:00PM October 15, 2018
Treasurer Paul Keating’s floating of the dollar in the 1980s symbolised Australia’s willingness to embrace globalisation.
It was also the decade when iconic winery Orlando Wines distributed its non-alcoholic beverage Claytons.
Today the term “Claytons” is commonly used to describe something masquerading as legitimate when it isn’t, which begs the question, is the Office of the Australian Information Commissioner (OAIC) a Claytons regulatory body?
As confronting as the question may seem, the stark reality remains, we continue to establish regulatory bodies that are toothless tigers, and are ineffective at executing what they are mandated to do.
The OAIC’s key objective is to prosecute serial offending corporates who repeatedly show no regard to the codes of practice and regulations required as custodians of our personal information.
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With one month left to opt out of My Health Record privacy concerns remain

From today Australians have 31 days to opt out of the controversial ehealth scheme, My Health Record (MHR). As the deadline approaches the chorus of criticism for MHR has not subsided and the Senate committee investigating the scheme has been granted another extension.
There are two Senate Inquiries into My Health Record – one looking at the overall system and a second investigating whether the underlying legislation should be further strengthened.
The broader inquiry into MHR was scheduled to release its report last Friday, but a second extension was granted and a report is now expected on Wednesday, less than one month before the November 15th opt out deadline.
The second inquiry released its report on Friday, recommending the legislation proposed by Greg Hunt to strengthen MHR be passed. Despite supporting the changes overall, committee senators from Labour and The Greens argued the proposed changes did not go far enough to ensure privacy and security.
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15 October 2018

Tighter privacy measures agreed for MHR

MyHealthRecord Technology TheHill
Posted by Julie Lambert
A senate committee has given a tick of approval to proposed added privacy measures for the My Health Record, but the wrangling is far from over.
The My Health Records Amendment (Strengthening Privacy) Bill 2018 was drafted amid an outcry over privacy issues, such as whether police would be able to demand access to patients’ health information.
In one key amendment, the bill removes the ability of the system operator (the Australian Digital Health Agency) to disclose a patient’s information to a law enforcement or other government agency without a court order or the patient’s consent.
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Comments welcome!
David.

8 comments:

Anonymous said...

The first “propaganda’ My Health Record: Opt Out or Stay in.

I was sure I had read this sometime ago, and yes originally January. Are we now republishing old material to flog a dead hoarse?

Anonymous said...

I note revised optout figures are emerging in the press, just short of 1.2 million or 4.8%. That is remarkable, in two months more people have opted out than signed up in the first two years. Surely this is telling Canberra the system is not needed and it is preventing better solutions being tried and adopted where they work well.

https://www.zdnet.com/article/my-health-record-opt-outs-now-sit-at-over-1-1-million/

Bernard Robertson-Dunn said...

I wonder how many people would have opt-ed out if ADHA had done a proper media campaign explaining the costs and risks not just the benefits.

And told the truth. These statements are either incorrect or are an exaggeration:

"What is My Health Record?

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."

https://www.myhealthrecord.gov.au/for-you-your-family

Whatever happens in terms of the opt-out initiative, people will discover just how useless the thing is and GPs and specialists will be very reluctant to engage with it.

Think horses and water.

Bernard Robertson-Dunn said...

And for those not paying attention to twitter, the Labor party may well be getting ready to make myhr an election issue.

@billshortenmp

"Morrison needs to suspend the My Health Record rollout and order a privacy review. Now."

https://twitter.com/billshortenmp/status/1054954855670956034

@CatherineKingMP

"More than 1.1 million Australians have now opted out of the My Health Record following the Government's bungled roll-out #estimates"

https://twitter.com/CatherineKingMP/status/1054939798543065088

All the Labor party has to do is keep asking the questions "did you know about the My Health Record and what the government has done mostly without telling you? Can you trust this government?"

If the Labor party does make myhr an election issue and differentiates itself from this government, it will have to do something different if it wins the election. An absolute minimum would be to leave it at opt-in. Potentially they could save money and mimimise political risk by just scrapping it.

Anonymous said...

The ADOHA claim of less than 5% is like everything else they spew forth could have been written by Trump himself. Children cannot optout nor can the millions how have a record already whether they wanted one or not. The 1.2 Million who have opted out at a rate of 400,000 a month more accurately represents 8-9%.

Anonymous said...

6:03 PM. It is worth factoring in 17.8% of the population are 14 years of age or under, so cannot optout.

Anonymous said...

Children can't opt-out themselves but their parents can opt them out, so you can't really remove that population.

You can remove the 6 million who already have a record, as they can at best cancel rather than opt-out.

You can also remove a further 40%ish of the remaining, as at the Senate Inquiry we learned that only ~60% of people were aware that opt-out was a thing. We also know that many won't have the digital literacy necessary to opt-out.

Kelsey said at the Inquiry that there were 28 million possible records so lets be generous and take that as a starting point. Minus the 6 million, then 60% of whats left is ~13.2 million who could have opted out. 1.14 million of that amount is, what, 11-12%?

Anonymous said...

and most of the people who haven't opt-ed out probably believe the lie that they will be getting a summary of their health information.