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, February 05, 2019

Commentators and Journalists Weigh In On The MyHR Debate And Related Matters. Lots Of Interesting Perspectives - Week 29.

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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Note: This week has just covered all the privacy compromising announcements in a week – along with the myHR. It never seems to stop!
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The opt out period for My Health Record ends today, here's the pros and cons

January 31, 2019 12:12 AM

Everyone will be different, but you need to decide whether My Health Record is for you.

The Federal Government’s My Health Record has sparked healthy debate among many Australians, and has encouraged the community to engage in deep discussions around the privacy impacts associated with having a digital health record. Millions of Australians have sifted through large amounts of information in the search for a definitive answer on whether a digital health record is a good or a bad thing.
‍With the opt out period for automatic creation of a My Health Record expiring at midnight tonight, The Australian Data Privacy Certification Register has decided to present both sides of the argument, to help you decide whether a My Health Record is suitable for you.
‍Privacy experts remain concerned about the privacy and security of the data, and health professionals are prompting Australians to allow for record creation, and trust the scheme for both convenience, and for it to be accessed in the face of an emergency.
‍Remember, it’s your choice to have a My Health Record. You should critically assess whether a digital health record meets your needs, and whether you’re comfortable with the privacy protections in place. We understand that for some Australians, the My Health Record will be of benefit to them - while for others, it won’t have any material impact on how they receive their healthcare.
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My Health Record: clinics receiving up to $50,000 a year in incentives

Amid the bonus payments, there are concerns patients have been signed up without their informed consent
Medical clinics have been pocketing up to $50,000 a year in bonus payments to sign people up to the My Health Record scheme, amid concerns patients have been registered without their informed consent.
Doctors are eligible for payments of $6.50 a patient – capped at $12,500 a quarter – under the incentive program.
To receive the payments, healthcare providers must meet five requirements, including a target of uploading health summaries of some patients.
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My Health Record: what to do if you missed the opt out deadline

By now most people will have heard about the government’s ‘My Health Record’ system. It’s the online summary of a person’s health information that can be accessed anywhere, anytime by them and their healthcare providers.
The scheme has been operating for the past six years on an ‘opt-in’ basis. That is, you only have a record if you signed up for one.
However, starting this year, the scheme will create default accounts for every Australian unless they opt-out.
If you missed the opt out deadline of 31 January 2019 and a record is created, you can permanently delete your record at any time.

Why it matters

The My Health Record scheme has obvious potential to improve health care outcomes. But it’s also important that you know what you are consenting to, who is accessing your records and for what purposes they can be used. By using an opt-out approach, if you do nothing the government can assume your consent.
But what are you consenting to? Which conversations with your doctor will be recorded and who can see those? For what purposes can the information in your records be used? And how safe is your online health data from hackers?
Unfortunately, the answers to some of these questions are still not clear and although the government has announced that they will strengthen the relevant legislation to protect people’s privacy, many people are deciding to opt out of the scheme.
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New Permanent Delete Function for The My Health Record

01 Feb 2019


Australians can choose to have or cancel a My Health Record at any point in their life, according to new laws that came into place towards the end of January.
The laws aim to strengthen the privacy and security protections within My Health Record. A function has been activated in the My Health Record system that allows a person to permanently delete their record at any time, including any backups.
All records that have previously been cancelled will also be permanently deleted from the system.
If a person changes their mind, they can choose to register for a record to enjoy the benefits of controlling their health information securely in one place to support their health and care.
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How to use your new government owned online My Health Record

Sue Dunlevy, National Health Reporter, News Corp Australia Network
February 1, 2019 7:00pm
MORE than 22 million Australians yesterday got a government owned online My Health Record they were told could save their life but experts warn it’s vulnerable to hacking and could put your privacy at risk.
Here we try to walk you through some of the things you need to know about this record and how it affects you.
The first thing you need to know is that if you go looking for your My Health Record today you most likely won’t find it.
It could be a month before your My Health Record is created as the government waits to process opt out requests and generate the health care identifier information to set up the records.
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AMA Transcript – Dr Chris Moy – My Health Record

31 Jan 2019

Transcript:   AMA Chair of the Ethics and Medico-Legal Committee, Dr Chris Moy, ABC Radio Melbourne, Breakfast with Jacinta Parsons and Sami Shah, Thursday, 31 January 2019
Subject:   My Health Record
 JACINTA PARSONS:   Have you opted out of My Health? Or have you decided, through consideration, that you’re going to stick with it? Or, probably like the large population, you’ve woken up this morning, it’s the very last day to opt out and you’ve gone “oh, hang on, what is this all about? I have no idea”. So look, we’re going to run through some of the stuff that the My Health Record is all about, some of the criticisms that were put to it early in the year that changed the date of your opt-out period and extended it to give you a bit of time to look into it – and have you actually spent the time doing that? Or have you just left it ‘til today?
We’re joined by Dr Chris Moy. He’s a clinical reference lead for the Australian Digital Health Agency, Federal Chair of the Australian Medical Association Ethics Committee. Good morning to you.
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My Health Record: Experts move to ease concerns as opt-out period ends

The impending creation of millions of electronic health records still has some Australians on edge, prompting authorities to reassure users regarding privacy and security issues.
31 Jan 2019
The My Health Record opt-out period ended 31 January.
The lead-up to the end of the My Health Record opt-out period on 31 January was punctuated by a series of reports regarding the security and effectiveness of the new system.

Many people have chosen to use the new function created by the Australian Digital Health Agency, which allows patients to
permanently delete their record at any time.

‘The RACGP successfully lobbied to improve the privacy provisions of the My Health Records Act,’ RACGP President Dr Harry Nespolon told newsGP.
The changes include requiring a court order for non-clinicians to access the record and permanent deletion of the record if persons choose to opt out.
‘People can now join or leave the system at any time, despite the formal opt-out period ending,’ Dr Nespolon said.

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/ Published in MEDIA, NATIONAL MEDIA

Morrison Needs To Extend My Health Record Opt-Out

The Morrison Government has failed to adequately address lingering security and privacy concerns about the My Health Record as the opt-out period comes to an end.
Scott Morrison and Greg Hunt were dragged kicking and screaming into accepting Labor’s amendments and an extension to the opt-out period last year.
But since then we’ve had more reports of privacy breaches, and we’ve heard the concerns from doctors about their potential legal liabilities. The Government has done nothing to reassure patients or clinicians about these issues.
We had also hoped the Government would have used the two-and-half-month extension  to address other outstanding privacy issues – particularly around minors, default settings and automatic uploads. But they have failed to do so.
We maintain there should have been a longer extension of the opt-out period to ensure these issues were sorted out.
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Workplace Advice & Support: My Health Record

A My Health Record (MHR) will be created for every Australian (unless opted out) effective 1st February, 2019.
The My Health record is an online summary of an individual’s health information and will be maintained for 30 years after an individual’s death or 130 years after birth. The My Health Record will not replace existing health records but supplements it and is easily accessible. My Health Record should lead to better coordinated treatment for individuals as their health information can be accessed at a moment’s notice. 
The My Health Record will contain information of your medical conditions and treatments, medicine details, allergies, and test or scan results. Documents such as hospital discharge summaries, referral letters, immunization records and organ donor decisions can also be added to your record. Once you have one, doctors can upload health information into it unless you ask them not to. It is therefore up to you to discuss adding or not adding a document to your record. If you have privacy concerns, you can set a Record Access Code and give it only to healthcare professionals you want to access your record. If you want to restrict certain documents, you can set a Limited Document Access Code. These controls may be overridden in an emergency. 
The My Health record system operates under the My Health Records Act 2012 (the Act). The Act sets out: 
  • the role and functions of the Australian Digital Health Agency (the system operator of the My Health Record);  
  • a registration framework for individuals, and entities such as healthcare provider organisations, to participate in the My Health Record system; and 
  • a privacy framework (aligned with the Privacy Act 1988) specifying which entities can collect, use and disclose certain information in the system (such as health information contained in a healthcare recipient’s My Health Record), and the penalties that can be imposed on improper collection, use and disclosure of this information. 
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My Health Record: To opt in or out? The case for both sides

Today is the final day to opt out of the controversial My Health Record. So should you? Tory Shepherd looks at both sides.
Tory Shepherd
The Advertiser January 31, 201912:30am
Today is the final day to opt out of the controversial My Health Record. So should you?
Here are the major arguments for and against the national medical database.
For
In the pro-MyHealth camp is a range of doctors and scientists, including most of the peak health bodies.
They say having a national, digital record of individual health “journeys” will stop medication errors (and doctor shopping), give health specialists a heads-up on a patient when they see them for the first time, and help patients track their own treatment.
They argue the patient will control what goes on file, and stays on file. Parents will have control over young children’s files. There will also be a stream of data that will help researchers get better outcomes.
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It's Apple versus Facebook in a battle for the soul of tech

By John McDuling
1 February 2019 — 6:58am
Facebook has already been hit by its first crisis of 2019. And Apple, its nascent bĂȘte noire in the tech industry, has been quick to pounce on it.
The Mark Zuckerberg led, $US430 billion social media behemoth reported its quarterly results on Thursday morning, Sydney time. They encompassed one of the most difficult periods Facebook has faced since it listed on the Nasdaq in 2012.
And it must be said, the impact of that on its financials was...negligible.
Towards the end of last year, Facebook was submerged in one of its worst crises to date, over its handling of an earlier crisis.
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A law unto themselves: Shadow regulators must be reviewed

By Peter Strong
1 February 2019 — 10:30am
There is an emerging concern around a group we call our shadow regulators. These are not for profit organisations that have a monopolistic control over the business community on some niche issue.
These organisations do not report to any outside body such as a Senate Estimates Committees or the like. They are a law unto themselves.
They normally set their own prices for services or products and have a very easy life without too much pressure. They fly beneath the radar living comfortably and easily while the people they get their income from, in the main small business people, have to do the hard yards to keep them and others in the comfort to which they have become accustomed.
These organisations are to be found around many key business matters including bar code management and access to music as highlighted below.
Note: Talks about GS1.
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Shoshana Zuboff's book shows we've moved into the age of surveillance capitalism

By Shoshana Zuboff
Updated 31 Jan 2019 — 10:11 AM, first published at 28 Jan 2019 — 8:05 AM
A decade ago, privacy scholars Chris Hoofnagle and Jennifer King found that people's interest in protecting their privacy increased in proportion to their understanding of how companies acquire and use their personal data. As long as people were kept in the dark, companies could count on little resistance. That helps to explain how the plundering of personal data has exploded during the past 20 years. Tech companies learned how to turn your life into data without asking.
That our ignorance is their bliss is among the unique signatures of a new economic logic that I call surveillance capitalism.
Capitalism has always evolved by claiming things that exist outside the market and bringing them into the market for sale and purchase. This is how we turned making a living into "labor" and nature into "real estate." Surveillance capitalism now claims private human experience as free raw material for translation into behavioral predictions that are bought and sold in a new kind of private marketplace. And it takes place almost completely without our knowledge.
Surveillance capitalism is no longer the exclusive domain of the tech sector. It has now invaded every domain - automobiles, insurance, entertainment, finance, retail, health, real estate and more. 
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My Health Record: Hacking fears as medical specialists not registered to use it

Sue Dunlevy, National Health Reporter, News Corp Australia Network
January 31, 2019 9:00pm
Exclusive: Almost every Australian will have a government-owned online My Health Record created for them from Friday as cybersecurity experts warn the system is vulnerable to hackers.
Meanwhile, News Corp has been told most medical specialists can’t use the $2 billion record in their clinics because their computer software is not compatible and most are not registered to use it.
Specialists can access the records when they are working in most public hospitals but not all private hospitals.
“A lot of specialists records are not computerised, they write paper records and operation notes and put them in a manila file, and their software is not compatible,” said former AMA president and now independent MP Professor Kerryn Phelps.
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My Health Record deadline: couple find account set up without consent in 2016

University lecturer and husband tried to opt out but were told they already had account
Today is the deadline to opt out for My Health Record. An academic and her husband found out an account was set up without their consent. Photograph: Australian Digital Health Agency
A Melbourne-based university lecturer has been “completely shocked” to discover that a My Health Record account was set up in both her and her husband’s names without consent in 2016.
The couple tried to opt out of the scheme ahead of the deadline on Thursday but call centre staff members told them they both already had an account that was set up as part of a trial three years ago.
However, the trials from March to October 2016 were held in the Nepean-Blue Mountain region of New South Wales and in northern Queensland.
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Labor still pushing for MHR changes

A day before the end of the My Health Record opt-out period, Shadow Health Minister Catherine King again called for its extension

Catherine King has repeatedly called on the Morrison Government to extend the period, claiming that it has failed to adequately address security and privacy concerns.
In November, Health Minister Greg Hunt announced the government would introduce further amendments to the My Health Record legislation, after concerns about protections for people affected by domestic violence, as well as misuse of information, were raised.
“Scott Morrison and Greg Hunt were dragged kicking and screaming into accepting Labor’s amendments and an extension to the opt-out period last year,” Ms King said.
 “But since then we’ve had more reports of privacy breaches, and we’ve heard the concerns from doctors about their potential legal liabilities. The Government has done nothing to reassure patients or clinicians about these issues.
“We had also hoped the Government would have used the two-and-half-month extension to address other outstanding privacy issues – particularly around minors, default settings and automatic uploads. But they have failed to do so.”
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My Health Record will have a lower participation rate than government officials expected

  • January 31, 2019
The My Health Record will have a lower participation rate than government officials expected when they quietly calculated its economic benefit at $15 billion over 10 years.
As the formal opt-out period ends today, internal government documents show the Department of Health put “the expected opt-out rate” at 2 per cent after the My Health Record stopped being a voluntary scheme.
However, lingering privacy and security concerns, and questions over the marketing and communications campaign, led more than 1.1 million Australians to opt out before the end of October.
The Australian Digital Health Agency has not released updated figures but previously estimated the opt-out rate to be running at under 5 per cent, while Health Minister Greg Hunt yesterday said a 10 per cent opt-out rate would still be “extraordinary”.
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Matt Barrie leads digerati's opt-out of 'awful' My Health Record

By Bo Seo
30 Jan 2019 — 11:00 PM
Freelancer chief executive Matt Barrie is among the technology executives, engineers and academics who say they won't be using the federal government's My Health Record, citing privacy concerns ahead of Thursday's deadline to opt out of the system.
My Health Record is an online summary of an individual's health records, stored in a centralised database managed by the government. Its proponents say it gives patients greater mobility and the health system a richer information base on which to craft public policy, but its implementation has been dogged by privacy concerns.
Mr Barrie, who is the founder of a $308 million valued, ASX listed online jobs platform, said his decision to opt out was connected to his broader concerns with data security.
He said the health record came in amid policies mandating backdoors into encrypted messages and metadata laws that were prone to exploitation and abuse.
"This is a system that is so awful and undermines the medical privacy of the public so badly that they need to "opt-in" everyone automatically, because otherwise nobody would voluntarily sign up to it," Mr Barrie said.
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Are you in or out? Controversial My Health Record deadline is TODAY - and anyone who doesn't opt out will have their private medical details uploaded online

  • More than 17 million Australians to have all medical records online tomorrow
  • It will enable doctors to access a patient's complete file with a simple password 
  • Health Minister Greg Hunt said it would improve a doctor's diagnosis abilities
  • But there are privacy fears over the information falling into the wrong hands
  • Domestic violence groups fear abusive partners could access sensitive data  
  • Government has flagged five years' jail, $315,000 fines for illegal data access
Australians only have until the end of the day to opt out before their medical records are uploaded online for thousands to read.
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Today is your last chance to opt out of the government's digital health record

By Ben Grubb
31 January 2019 — 12:00am
Thursday is the last day you can opt-out of the federal government's controversial $2 billion national electronic health record before you are automatically enrolled, enabling hundreds of thousands of Australian healthcare professionals to gain access to your private medical information.
Called My Health Record, the system, built by IT outsourcer Accenture, aims to centralise health records, allowing patient information to be readily available to various medical professionals.
The three-month opt-out period for the record was first meant to occur between July 16 and October 15 last year, but was extended to November 15 after an outcry over privacy and security concerns.
It was then extended a second time, until January 31 this year, to address the issue of proposed privacy fixes by Health Minister Greg Hunt not being passed by Parliament in time.
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Ambulance paramedics can’t access the My Health Record

Sue Dunlevy, National Health Reporter, News Corp Australia Network
January 31, 2019 6:00am
The Government says the $2 billion My Health Record will save your life in an emergency but there are major problems with that claim - ambulance paramedics can’t access the record.
Paramedics are often the first responders in a medical crisis and information on the My Health Record about a person’s medical conditions and medications could be crucial in determining how to treat them in an emergency.
However, News Corp has contacted ambulance services in every state only to be told they can’t access the My Health Record.
The Australian Digital Health Agency, which runs the record, confirmed to that more than six years after the record was launched, access by ambulance paramedics is “not activated yet”.
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Gen Z willing to sacrifice privacy for benefits of technology

A newly published international study, conducted by The Centre for Generational Kinetics and commissioned by WP Engine, has revealed the ways that different generations view and interact with the digital world, with Gen Z fwilling to sacrifice privacy for the personalisation that modern technology is able to provide.
The study shows that Gen Z, born between 1996 and 2010, are fuelled by technology in all facets of their life, and expect the Internet to connect them, entertain them, sell to them and build their digital brand.
According to WP Engine, these expectations also translate to what this generation is prepared to give up for their digital experience.
“We have seen that younger generations have been far less likely to opt out schemes like My Health Record, and 45% of Gen Z said that they are happy to provide their data to prioritise a personalised experience over privacy. Beyond that, 64% of Gen Z believe websites should already know what you are looking for before you tell them,” WP Engine notes.
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10:34pm, Jan 30, 2019 Updated: 11:19pm, Jan 30

The fuss behind My Health Record as opt-out deadline closes

Australians have until the close of January 31 to decide to opt out of the controversial My Health Record – and there’s a lot to consider.
The date was pushed back twice last year amid privacy concerns, but Thursday is now the official deadline, before every Australian is automatically registered to the e-health database.
The record has been beleaguered since it was first flagged, with two deadline amendments, potential privacy breaches, and Labor calling for an independent review into the system.
The website crashed in November in a rush to opt out over privacy fears, before Health Minister Greg Hunt conceded to move the deadline to January 31.
Just this week, The New Daily revealed a “confusing” design flaw in external software for pathologists that had the potential to lead to errors.
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My Health Record benefits travelling seniors - peak body

Australia’s peak body representing the interests of older people, Council of the Ageing (COTA) Australia, has urged retirees travelling Australia to consider the benefits of a My Health Record.
30 January, 2019 ADHA Propaganda
My Health Record is a digital collection of reports relating to your health, such as prescriptions, doctors records, imaging and other test results. A My Health Record will be created for every Australian from tomorrow unless you decide to opt out. The data that will be added isn't new, but currently stored separately by Medicare, your doctor, hospital or other health professionals. My Health Record simply saves all the information in one place and you can view your own information as well.
You can permanently delete your record at any time and if you change your mind, you can also re-register for one in the future.
Amid concerns about the security and accessibility of people’s records, the Government introduced further legislative amendments in November last year following a Senate inquiry to ensure the privacy of information in the system. Changes included tougher penalties for those who misuse the system, such as increased jail time, larger fines, and prohibiting employers from requesting and using information from someone’s My Health Record file.
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January 29 2019 - 3:30PM

My Health Record: Opt out option taken by GP

Nadine Morton
A NSW Central West doctor will opt out of the Federal Government’s My Health Record initiative ahead of the deadline this week.
My Health Record is an online summary of key health information such as allergies, medicines you are taking, medical conditions you have been diagnosed with, and pathology test results such as blood tests.
The national database is accessible by health professionals including GPs and hospital emergency department doctors and nurses.
The scheme has been criticised by some who claim that the government has not proven that information will not be stored securely.
More than 6.4 million Australians already have a My Health Records and unless you opt out, one will be created for you after January 31.
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10:30pm, Jan 29, 2019 Updated: 10:12am, Jan 30

My Health Record design flaws could ‘put patients at risk’

My Health Record has pulled a “confusing” software design flaw after inquiries by The New Daily, just days before the opt-out deadline that was twice pushed back over a privacy backlash.
The flaw was spotted by a former worker on the controversial e-health network, who said it could risk patient privacy.
Rachel De Sain, the former head of innovation and development at the Australian Digital Health Agency (ADHA), supports the “life-saving” My Health Record.
But the digital health strategist said poor design of external software could unnecessarily burden health workers and put patient privacy at risk.
She said a mistake could lead to negative headlines and risked the government “throwing the baby out with the bathwater” in election year.
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My Health Record could be a 'lifesaver’ for migrant communities in Australia

As Australians weigh up whether to opt-out of the My Health Record before the extend deadline of January 31, they're being reminded that there could be benefits for those from culturally and linguistically diverse backgrounds.
30 January, 2019 ADHA Propaganda
By Maani Truu
My Health Record will mean better medical care and fewer hospital admissions for people from culturally and linguistically diverse communities (CALD), according to the national group representing Australia’s ethnic communities.
Mohammad Al-Khafaji, acting chief executive officer of the Federation of Ethnic Communities’ Councils of Australia (FECCA) said the record can bolster communication between medical professionals and people with low levels of English proficiency, leading to better health outcomes.
 “My Health Record is a tool that no doubt will be a potential lifesaver for many CALD Australians, especially those with limited support and limited English,” he told SBS News.

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My Health is Australians' choice: minister

Australians who haven't opted out of having a My Health Record by Thursday will soon have one, but the health minister says they can delete it when they want.
Australian Associated Press January 30, 201911:53am
Australians are being reminded it is up to them whether or not they have an electronic medical record, as the "opt-out" deadline for My Health Record looms.
Health Minister Greg Hunt has stressed that people can join or leave the system at any time, despite a formal "opt-out" period ending on Thursday.
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There are real benefits to be had from the My Health Record

28 January 2019 — 8:00pm
After a delay to strengthen security and privacy protections, the radical expansion of the federal government’s centralised digital medical records system will be begin on Thursday. Unless you opt out, your medical records will be loaded into a national database accessible by health professionals.
This is a reversal of the situation since the 2012 launch of My Health Record, and is expected to increase the participating proportion of the population to about 90 per cent from the 25 per cent to which it has grown as an opt-in program. About 6.5 million people are already in the system, while 1.1 million have opted out.
The vast majority of the approximately 17 million people poised to have their medical data collated already bank, shop and do much administration online, indicating they are generally comfortable sharing personal data online. For such people, and for those who have complicated, chronic or serial health issues, having a My Health Record file makes good sense. There are evident, potentially life-saving benefits to doctors and surgeons having access to information in an emergency, for example.
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The new, desperate struggle to secure the critical fabric of society

By Nicholas Stuart
30 January 2019 — 12:00am
We are at war.
Today, yesterday, each and every day, strings of malicious code are pushed down wires, searching for their targets. Some of these are simple thieves; some seek information that others want to keep private. These are the usual activities of spy and intelligence agencies.
What’s changed today is that other armed forces have got into the game as well. They’re planting digital bombs, burrowing down and preparing for war. The problem is our response is being critically hobbled.
For hundreds of years we’ve accepted, tolerated, and grown accustomed to spies collecting information and operating clandestinely without any declaration of war. Codes of behaviour have grown up around such activities. These practices have been normalised. But what’s changed, today, is that it’s not just trench-coat wearing intelligence agencies that are operating in the cyber world and this is not a low-stakes competition. It’s a new, desperate struggle to secure the critical fabric that links our modern post-industrial society. Rip this apart and the country disintegrates.
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Denham Sadler
January 29, 2019

MHR opt-out deadline looms

My Health Record
Lizzie O'Shea: "There are many design flaws that have been made known to government and not been remedied."
The deadline to opt-out of the government’s highly controversial My Health Record is looming amid ongoing concerns surrounding the reliability and security of the data stored on the system.
While all Australians that haven’t opted out will be set to get a My Health Record from Thursday, former government tech lead Paul Shetler said the entire system is “obsolete” and requires a “fundamental rethink”.
The opt-out period was originally slated to finish in November, but was extended until 31 January by the Senate due to a number of concerns and ongoing issues.
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My Health Record deadline looms, with privacy experts and Government at odds

By Medical reporter Sophie Scott, technology reporter Ariel Bogle and Specialist Reporting Team's Laura Gartry
If you are still unclear about how My Health Record works or whether you should have one, you are not alone — many people say they are still confused.

Key points:

  • January 31 is the last day to opt out of having a My Health Record created for you
  • Many people are uncomfortable with having multiple agencies and doctors access their information
  • The chairman of the AMA says My Health Record is comparable to internet banking, and will save lives
Privacy experts are concerned about the system's security, yet health experts are urging Australians to join, saying a connected data system will save lives and reduce medical errors.
After January 31, if you haven't chosen to opt out, a My Health Record will automatically be created for you.
For people like Ash Polzin who have a complex health record and a history of incorrect diagnoses, they prefer opting out.
During the 20-year-old's two-year transition from a woman to a trans-man, Ash was seen by multiple medical specialists and given varying diagnosis and treatment plans.
"Even digital health advocates and the allied health networks that I'm involved in came to the decision that it wasn't the right choice for me," Ash said.
"A big part of that was knowing that I already have incorrect diagnoses on my health records in hospitals and I don't want those impacting my care."
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Mon 28th Jan 2019

My Health Record: Insecure, Incomplete, Not Fit For Purpose. Why the Rush?

Is the rush to force 15 million Australians into the My Health Record (MHR) system without their consent just a ploy to have their private data available for commercial purposes at a later date? Would you trust this and future Governments to do the right thing?, asked Dr Tim Woodruff, president, Doctors Reform Society.
On 31st January millions of Australians will have a My Health Record created for them, whether they are aware or not. The main stated purpose is to improve patient care. It has little chance of doing that because it will be so incomplete in most cases. Its other purpose is data collection for ‘research’ purposes. The legislation to control such use has not been passed.
There are many problems with MHR. It could be useful if it was designed and implemented properly. The track record suggests that that has never been the intention. It took a Senate Inquiry to find a huge range of problems with the program, both in its design and in its implementation. The Government reluctantly accepted it needed to make some changes but it has forged on, neglecting or delaying dealing with many of the faults exposed.
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How the GDPR affects Australian Businesses

Australia January 21 2019
Many in the Australian business community, and especially those trading internationally or with a technology or data focus, will be coming to grips with (or at least have heard about) last year’s ‘once in a decade’ changes to the European Union (EU) equivalent of the more familiar Privacy Act applying in Australia.
Effective from 25 May 2018, the General Data Protection Regulation (GDPR) of the EU mandates comprehensive requirements for the protection of personal data. The GDPR gives teeth to European data protection law by allowing for the imposition of significant penalties for contraventions of the GDPR by controllers and processors of personal data. In some cases, these penalties include fines of up to €20 million, or 4% of the worldwide annual revenue of the prior financial year, whichever is higher.
Australian businesses may be caught by the GDPR even where they do not have a European parent or subsidiary. This is significant as it may require compliance with the GDPR in a wider range of situations than previously applicable, and potentially impose significant sanction on non-EU trading entities if in breach of the rules.
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My Health Record: How to opt out, pros and cons explained

Sue Dunlevy, National Health Reporter, News Corp Australia Network
29 January, 2019
With less than 72 hours to go, every Australian will get a My Health Record on January 31 unless they opt out.
The record will contain information on the medicines you are taking, your medical consultations, medical test results and reveal if you have had an abortion, a mental illness, a sexually transmitted disease or a drug addiction.
The record is likely to be useful for older Australians and those with chronic and complex health conditions and people taking multiple medications.
If these people end up in hospital in an emergency doctors can access their record and see what medications they are taking and whether they have any allergies.
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American leaks details of Singapore HIV patients online

An American man has leaked details on the Web about individuals who have been diagnosed with HIV in Singapore, having apparently having obtained the information from a man with who he had a relationship.
The Singapore Ministry of Health said in a statement that it had verified that confidential information about 14,200 people diagnosed with HIV uptil January 2013 and 2400 of their contacts had been leaked online by Mikhy K. Farrera Brochez, a US national who had been living in Singapore between January 2008 and June 2016.
The statement said that the online information had been taken down but Brochez was still in possession of the same.
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Should you opt out of the My Health Record?

Tuesday 29 January 2019 8:06AM (view full episode) ADHA Propaganda
The deadline for Australians to opt out of the My Health Record is rapidly approaching.
You've got just 48 hours to decide whether to remove yourself from the digital one stop shop, which records your entire medical history.
So far about 1.1 million people have done just that but about 6.5 million people are enrolled in the digital medical records system.
The rollout was delayed due to an array of problems, and while the Senate has now passed amendments to improve safeguards, concerns remain about privacy, security and medical liability.

Guests

Dr Steve Hambleton
Chair, My Health Record Expansion Committee; former President, Australian Medical Association
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“Some patients may even die”: GPs warn against My Health Record ahead of looming 31 Jan deadline

28 January 2019
As the 31 January deadline to opt out of My Health Record approaches, doctors are sounding the alarm once more over the controversial system that some claim could even cause patient death.
My Health Record is an online summary of all your health information held by the government. It aims to be a ‘one-stop shop’ for patient records and data, accessible by registered healthcare providers involved in your care.
Over a million Aussies have already opted out of the scheme which rural doctor and Flinders University senior lecturer Tim Leeuwenburg has described as a “shambles”.
It’s also been flagged by medical practitioners, industry experts and academics alike for its potential susceptibility to hackers, availability to third parties without users’ express consent, and insecure protection.
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Ross and John get ‘My Health Record for dummies’ amid fresh legal concerns

28/01/2019
MML
You know those news stories that just make your eyes glaze over?
For Ross and John, that’s been the My Health Record debate.
But they concede it’s important, so today they said “Righto, time to shape up” and asked Australian Medical Association president Dr Tony Bartone to break it down.
It’s back in the news because some doctors are said to be seeking legal advice, concerned they could be liable for mistakes on the new My Health Record website.
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January 28, 2019 12:10 am

Australia’s First Independent Privacy Certification Framework Launches, As The World Recognises Data Privacy Day.

Not for publication prior to 12:01am AEST 28 January 2019
Australia’s First Independent Privacy Certification Framework Launches, As The World Recognises Data Privacy Day.
ADELAIDE, AUSTRALIA – 28 JANUARY 2019 – The Australian Data Privacy Certification Register, Australia’s first independent privacy certification framework, launches today – coinciding with the twelfth edition of Data Privacy Day.
The Australian Data Privacy Certification Register (ADPCR) has launched its new privacy framework today, offering independent privacy certification for Australian organisations. The framework centres around six key privacy principles, encompassing how organisations manage their people, process, and policy. Using an automated assessment engine, the ADPCR verifies the information provided by organisations, to ensure they have met the standards required to achieve certification.
An ADPCR spokesperson has confirmed that the new framework, which extends upon existing privacy legislation, but does not certify organisations for compliance with the Australian Privacy Principles (APP’s), has already started gaining traction – “We are deep in talks with several key Australian businesses who are excited about undertaking certification, and are keen to demonstrate to their customers that they do take privacy seriously. We’ll start to see the size of our certification register build over the next couple of months.”

Note: Not sure about this - can't find who they are and what their motive is. Does anyone know?
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GPs raise fresh concerns about the legal risks of My Health Record

Monday 28 January 2019 6:15PM (view full episode)
Australians have until Thursday to opt out of the Federal Government's controversial My Health Record database.
Late last year, the Government agreed to an amendment which pushed back the opt out deadline, amid concerns around privacy and data security.
But now GPs are warning of the legal risks of conflicting or incomplete My Health Record information, and are demanding the Government indemnify them against potential lawsuits.
Guest:
Dr Kerryn Phelps, Independent MP for Wentworth
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Shorten backs doctors over My Health liability concerns

1:43pm, Jan 28, 2019
The My Health rollout has been controversial from the beginning.
Labor leader Bill Shorten wants another extension on the deadline for patients to opt out of the controversial MyHealth record as doctors warn it should be out on a back burner for another 12 months.
January 31 is the latest deadline for people to opt out of the government’s troubled My Health Record system. If they fail to do so, millions Australians will have a record created for them.
The government stresses that if you already have a My Health Record, and decide you don’t want one anymore, you can cancel it.
Doctors are warning it must be delayed because it’s not a complete list of patients’ drug records and patient care raising fears of legal liability.
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Dr Chris Moy on My Health Record: There is almost a distorted focus on privacy compared to the need for doctors to know vital information about their patients. MORE: (link: https://bit.ly/2G1zxPi) bit.ly/2G1zxPi #skylivenow
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ParentsNext: single mothers say they were forced to allow 'sensitive' data to be collected

Exclusive: welfare program participants told they would have payments cut if they refused to sign form
Single mothers placed on a compulsory welfare program for disadvantaged parents allege they were pressured into allowing private job service providers to collect their “sensitive information”.
ParentsNext participants are asked to sign a privacy notification and consent form, which is similar to documentation provided to those on other welfare programs such as the employment scheme Jobactive.
The program is compulsory for those who want to receive parenting payments and are considered “disadvantaged”, but departmental guidelines state that participants may decline to sign the form and still take part.
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Policy & Politics | 28/01/2019 7:00:05 AM
Doctors Reform Society

Patients may die from My Health Record

Doctors warn patients may die as a result of the Morrison government rushing to introduce their national My Health Record (MHR) program on 1st february 2019 before doctors have accurate and complete computerised medical records .
"I have worked as a GP and an accreditor for General Practice for 20 years and have reviewed thousands of medical records and  an average of  20% of records include  inaccurate or out of date diagnosis and medication lists. Medical record inaccuracies when used by a  doctor, who dosnt know the patient, or one of the 300000 health workers who will have access to everyones My Health Record from 1st february will result in some patients receiving inappropriate treatment and some patients may even die from the inappropriate treatment"said Dr Robert Marr spokesman for Doctors Reform Society
"Medical confidentiality will also be destroyed by the Morrison governments plan to rush the introduction of MHR on feb 1st because over 300000 health workers including everyone from podiatrists to chiropracters will be able to access anyones medical records if they feel they have a legitimate reason to look at their records."
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27 January, 2019

Pros and cons of opting out of My Health Record as deadline approaches

The deadline for Australians to opt out of a new $2 billion system, which will see their medical details recorded online, will finally pass on Thursday, after a delay which ensured the rollout of more stringent controls to safeguard the data.
My Health Record will see millions of patients’ details uploaded for health professionals to access as part of an online summary of an individual's information.
It will include information on their allergies, medical conditions, treatments, medicines, and test reports, with the data able to be shared securely with their clinicians.
After mounting pressure over privacy fears, the original deadline to decline involvement was extended from last November to January 31 by Health Minister Greg Hunt.
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Comments welcome!
David.

12 comments:

Anonymous said...

I note capital health network on twitter yesterday using “approximately 90% of Australians will have a my health record. Wonder if they know something? It does tie into the information floating around the Agency that 23% of eligible citizens that could opt out have opted out.

Anonymous said...

Unsubstantiated = meaningless. What are the facs?

Anonymous said...

23% sounds a bit more correct than ten. You have to remove the 6 million that already have a record - and if you're playing fair, also all those without the digital or health literacy to be able to make an informed decision, or act on it

Anonymous said...

Population = 25 million.

If 10% opted out = 2.5 million
If 20% opted out = 5.0 million
If 23% opted out = 5.75 million

6 million had already been enrolled before opt-out. How many of those people have now opted out?

As 6 million already had a record the 'base' for opting out was approx 19 million. If 23% of these eligible citizens opted out that would be 4,370,000 which would equate to 17.48% of the 25 million population.

And probably even more significant is the % of doctors not enrolled or using the system:
(a) GPs
(b) Specialists

Bernard Robertson-Dunn said...

Those numbers can make sense if you realise that only about 17 million people are eligible to opt-out.

Out of a total population of 24 million, 6.43 million have a record and about 1.4 million are not old enough to opt-out.

23# of people eligible to opt-out comes to 3.9 million, which is many more than they were hoping for.

This number can be re-framed into 90% of people will have a myhr by appropriate rounding/overestimating/underestimating

In the context of care.data Tim was quoted as saying:

"When asked by the (UK, MP health) committee what would happen to the project if 90% of patients decided to opt out of allowing their data to be sent to the database, Kelsey said: “That would not be a good position for us to be in.”

He also said that if 90% of patients decided to opt out he wouldn’t think there would be a health service for much longer, to which the committee accused him of scaremongering."

https://www.computerweekly.com/news/2240215074/NHS-England-admits-failure-to-explain-benefits-of-caredata

He will do his utmost to keep the number above 90%

It is a bit ironic that the failure to "explain the benefits of care.data to patients" is exactly what's happened in Australia and why the ADHA went silent at the end. The more they tried to explain, the more people opt-ed out.

Maybe it wasn't a failure to explain the benefits, more a lack of benefits of what they were trying to explain.

Anonymous said...

All hypothetical. Show me the evidence. Show me the numbers.

The last statistics published was 13 January.

tygrus said...

Could children be opted out by themselves or by their parents?
I think you could take 23% of a much smaller number if it excludes children, those already in the system, visitors (who have left), and Australians who have passed away.

Bernard Robertson-Dunn said...

At what age do I stop having access to my child’s record?

https://www.myhealthrecord.gov.au/for-you-your-family/howtos/frequently-asked-questions

"From 14 years, a young person can manage their own My Health Record.

Under new My Health Record privacy laws, when a child turns 14, their authorised representatives, usually their parent/s or guardian/s, will automatically be removed from being able to access their child’s record.

If the young person would like a parent or guardian or other trusted person to have access to their record, they can add them as a nominated representative.

Technical changes to the My Health Record system will be made to reflect the new laws, and implemented in the system at the time of record creation."

That last sentence says that children aged under 18 cannot opt-out in the period just completed.

Anonymous said...

AnonymousFebruary 07, 2019 4:50 PM, yes the last numbers published were some time ago, using that number over that period it is not a good trend, that aside February 07, 2019 12:06 PM was simply stating something tweeted by an organisation that would have a relationship to those that would know the opt out figures. Rumours perhaps but there are similar figures being spoken about by a range of sources.

The silence does not help, if no one had opted out I am sure there would be parades and scantily dresses Morris dancers.

Anonymous said...

All hypothetical. Show me the evidence. Show me the numbers.

Quite agree the whole MyHR from powerpoints to mythical designs to advertising is hypocritical, limited and questionable evidence and yes were are the true numbers.

Anonymous said...

"Rumours perhaps but there are similar figures being spoken about by a range of sources."

Chinese whispers, no doubt.

Anonymous said...

No i pretty sure they were Australians that mentioned it but I have no doubt the Chinese are probably fully aware.