Quote Of The Year

Timeless Quotes - Sadly The Late Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

or

H. L. Mencken - "For every complex problem there is an answer that is clear, simple, and wrong."

Tuesday, November 20, 2018

Commentators and Journalists Weigh In On The MyHR Debate And Related Matters. Lots Of Interesting Perspectives - Week 18.

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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Australian government agrees to extend medical record opt-out

Editor: Amy Coopes Author: Amy Coopes on: November 14, 2018 In: #AusPol, digital technology, e-health
EDITOR’S NOTE: This piece has been updated following Wednesday’s Senate vote to extend the opt-out period until 2019
The Australian government agreed to extend the opt-out period for citizens from a soon-to-be-mandatory centralised online medical record system on Wednesday, bowing to pressure about unresolved privacy and data security concerns.
Australians will now have until January 31, 2019, to opt out of the government’s contentious My Health Record, after One Nation Senator Pauline Hanson successfully moved for the deadline — due November 15 — to be extended while the substantive legislation and outstanding issues be resolved.
The Labor opposition had earlier Wednesday pushed for a 12-month moratorium on the mandatory rollout of MHR, but was defeated 32-30.
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Hunt finally submits to My Health Record arm-twists as opt-out window extended

Health minister Greg Hunt has confirmed the opt-out period now ends January 31. The government has also proposed a Data Governance Board to oversee the secondary use of health data.
By Stilgherrian for The Full Tilt | November 14, 2018 -- 07:02 GMT (18:02 AEDT) | Topic: Security
"Today the Government worked with the Senate crossbench to extend the opt-out period for My Health Record," said health minister Greg Hunt in a statement on Wednesday afternoon.
He confirmed that the opt-out period, due to end this Thursday, will now end on January 31. This gives Australians nearly seven more weeks to opt out of the controversial centralised digital health records system before a record is created for them automatically.
Until now the government had been blocking all calls for an extension.
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The big question

Do data-sharing systems, like My Health Record, improve society or threaten security?

Dr Dan Angus

Senior Lecturer
School of Communication and Arts
Faculty of Humanities and Social Sciences
General purpose data-sharing systems like My Health Record are dangerous, blunt instruments, and ‘solutions in search of problems’.
My Health Record is an example of a top-down approach to technology design, where one takes an existing (often hyped-up) technology and creates a problem for it to solve. This approach stands in contrast to co-design, which seeks to work with target groups to identify concerns and design the most appropriate solutions.
Because of its homogeneous top-down approach, the architects of My Health Record have not considered or respected the inputs and perspectives of the diverse community of end-users. The rhetoric of the top-down approach is easy to spot, often of promised riches: efficiency, cost savings and simplicity.
Experience shows that this ‘one-size-fits-all’ approach to technology design will almost always fail to achieve these promised riches. And, when employed in systems such as My Health Record, it also suggests that insufficient care has been taken to safeguard vulnerable users.
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Teens’ privacy to be protected by MHR amendment

Amanda Lyons 16/11/2018 1:44:35 PM
The Federal Government has listened to the RACGP’s concerns about teen privacy and My Health Record, eHealth expert Dr Nathan Pinskier tells newsGP.
An amendment that will allow teenagers to protect their MHR from their parents’ scrutiny if they so choose is likely to pass the lower house in late November.
The Federal Government passed new privacy and security protections for My Health Record through the Senate yesterday, including measures such as permanent deletion of cancelled records, no law enforcement access without a warrant or a court order, and a two-month extension of the opt-out period until 31 January 2019.

In addition, a further amendment has been added to ensure that parents of children aged 14–17 will no longer receive automatic access to their child’s My Health Record. Instead, teenagers will have to nominate their parents as authorised representatives before they will be given access.

Dr Nathan Pinskier, the immediate past Chair of the RACGP Expert Committee – Practice Technology and Management, told newsGP this amendment is in line with RACGP advocacy efforts. .
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Greg Hunt had one job to do - Shorten on My Health Record debacle

November 15, 2018. Labor Leader Bill Shorten slams the government's rollout of the digital health record. Shorten says that the MyHealth digitisation of health records is a good thing, but that the government has failed to see many of the obvious flaws that have seen thousands of people scramble to opt out before the deadline. (AAP VIDEO/Alex Murray)
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My Health Record extension highlights lingering security, privacy concerns

As healthcare breaches continue unabated, one-third of Australians are uncomfortable with centralised health records
Health minister Greg Hunt may have cited website interruptions as the reason for extending the opt-out period for the government’s My Health Record (MyHR) scheme, but the decision also gives more time to address privacy concerns that have seen frequently-compromised industry sectors rushing to boost data security.
More than 1 million Australians have already opted out of the scheme, which will consolidate and centralise sensitive medical information from a range of providers, and the final numbers are likely to be much higher after a [xref:https://www.abc.net.au/news/2018-11-14/my-health-record-opt-out-period-extended-as-website-hits-issues/10496032 |last-minute stampede]] that this week sent the Department of Human Services’ opt-out website into meltdown.
It was an ignominious result for a strategy that has attracted scrutiny and criticism since it was announced. And despite the arguable benefits of an electronic healthcare record (EHR) – which the Australian Digital Health Agency (ADHA) has energetically spruiked with claims that EHRs can reduce prescription errors, improve service delivery to regional areas and better support cultural diversity – concerns over the privacy, security, and reuse of MyHR data have continued to taint the program’s adoption.
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Senate votes to extend My Health Record opt-out to January 31

An amendment put forward by Pauline Hanson has been agreed to by the Senate, less than 48 hours before the legislated opt-out period was due to end.
By Asha McLean | November 14, 2018 -- 01:59 GMT (12:59 AEDT) | Topic: Security
The Senate has on Wednesday agreed to push the opt-out period for the federal government's contentious My Health Record to January 31, 2019, following an amendment put forward by Pauline Hanson.
The move by Hanson followed an amendment request made earlier in the day by Labor to extend the opt-out period for 12 months.
Despite the Senate's vote, the House of Representatives is not sitting again until November 26, well after the opt-out window is due to close.
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New My Health Record privacy measures passed, but questions remain

Paul Hayes 15/11/2018 1:03:12 PM
The latest round of processes designed to strengthen the system’s privacy come one day after the Government extended the opt-out period.
Greg Hunt described the access provided by a system such as My Health Record as ‘a basic right in this day and age’.
The Federal Government has passed new My Health Record privacy and security protections through the Senate, but remains on the back foot following yesterday’s opt-out extension.

According to Federal Health Minister Greg Hunt, these privacy measures ‘further [protect] the health information of Australians’.
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My Health Record remains opt-out as Senate passes privacy amendments

The Australian government's version of improved health data privacy controls will be implemented after only minimal Senate debate.
By Stilgherrian for The Full Tilt | November 15, 2018 -- 02:22 GMT (13:22 AEDT) | Topic: Security
The automatic creation of digital health records will continue as planned for all Australians who haven't opted out by the new deadline of January 31.
The laws controlling Australia's contentious centralised My Health Record system will get significantly improved privacy provisions, however. So-called "secondary use" of health data will get regulatory oversight from a new Data Governance Board.
These changes were part of the My Health Records Amendment (Strengthening Privacy) Bill 2018, which was passed with amendments by the Senate on Thursday.
A Greens amendment to return to a voluntary opt-in model, something the government has consistently and strongly rejected, was not discussed by the Senate.
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My Health Record Opt-out Hard For People With Disability

The opt-out period for My Health Record is being extended until the end of January, but disability advocates say more resources are needed to help people with disability make an informed decision.  
Thursday, 15th November 2018 at 8:35 am
Maggie Coggan, Journalist
The opt-out period was due to close on 15 November, but on Wednesday, the Senate passed One Nation Senator Pauline Hanson’s motion of extending the deadline to 31 January. The extension was then approved by Health Minister Greg Hunt hours later.     
Therese Sands, co-CEO of People With Disability Association (PWDA), said she had strong concerns about accessibility not only with the opt-out system, but general information and resources available to people with disability on whether or not My Health Record (MHR) was a good idea.  
“We are very supportive of a longer time frame, as well as increased resources, to assist people with disability to make an informed decision about whether they wish to have a MHR or not,” Sands said.
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MyHealth Record official response

Thursday 15 November 2018 9:52AM (view full episode)
Dr Meredith Makeham, Chief Medical Advisor at the Australian Digital health Agency, answers some of the concerns raised around security and privacy within the MyHealth Record.
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Security expert says My Health Record a disaster waiting to happen

A provider of cyber security services to the government has spoken out about the weaknesses that dog the Federal Government's My Health Record system, claiming it cannot guarantee the privacy of sensitive Australian information.
Secure Logic chief executive Santosh Devaraj told iTWire there were serious concerns about the security and privacy principles which the My Health Record platform relied upon, as hundreds of thousands of medical practitioners would have access to the data.
And this would be with "limited access controls, including underage patients. This creates potential entry points for hackers which are subject to little-to-no security oversight", he said.
Devaraj, who earlier this month called for the government to put in place laws to make Internet of Things devices safer, said the existing MHR system had no reliable mechanism that would guarantee confidentiality and privacy of data.
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Your unanswered questions on My Health Record

Australians will have more time to opt out of the controversial My Health Record system. Here some of the issues readers found confusing.
news.com.au November 14, 20181:21pm
Australians will have more time to opt out of the controversial My Health Record system after an extension was approved.
The system went into meltdown today with Australians trying to opt out before tomorrow night’s deadline amid concerns that protections covering privacy and the right to delete records had not yet passed parliament.
But early this afternoon the Senate voted in favour of an amendment, proposed by One Nation leader Pauline Hanson, to extend the deadline for opting out from tomorrow to January 31.
This week news.com.au published a guide to some of the issues around the system but readers had some other unanswered questions.
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My Health Record opt-out deadline extended after system crash

By Dana McCauley
14 November 2018 — 3:55pm
Federal Health Minister Greg Hunt has agreed to extend the My Health Record opt-out deadline, after the system crashed again on Wednesday.
Mr Hunt will use his ministerial discretion to give Australians until January 31 to opt out of the controversial e-health system, giving the Parliament time to debate legislative changes aimed at better safeguarding patient privacy.
It comes after a Labor move in the Senate to suspend the system rollout for 12 months was narrowly voted down on Wednesday afternoon.
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Minister Greg Hunt relents on My Health Record opt-out period

  • 12:00AM November 15, 2018
The opt-out period for My Health Record will be extended again after Health Minister Greg Hunt reluctantly agreed to give consumers more time to see promised changes introduced into legislation.
Having already been extended by a month, amid a debate over privacy and security, the opt-out period was due to end today.
That would have seen individual records, on which copies of health data and clinical documents could be stored, created by Christmas for anyone who had not opted out.
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10:00pm, Nov 14, 2018 Updated: 10:06pm, Nov 14

In or out? The arguments for and against having a My Health Record

After insisting there would be no further extension, Health Minister Greg Hunt took to Twitter on Wednesday to extend the deadline for Australians to opt out of the government’s My Health Record project.
The opt-out period was meant to end on October 15. But community concerns about privacy – and lobbying by the Australian Medical Association (AMA) for certain amendments – saw the period extended to 3am on November 16. Thursday morning.
Parliament is currently debating proposed amendments meant to address security and privacy concerns.
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Senate forces My Health Record opt-out extension

By Justin Hendry on Nov 14, 2018 2:20PM

As opt-out portal falls over.

Australians will have an extra two-and-a-half months to opt-out out of the federal government’s controversial My Health Record scheme after the Senate agreed to extend the opt-out window.
The Senate on Wednesday forced Health minister Greg Hunt's hand by heeding calls to delay the end of the opt-out period until January 31, 2019.
The amendment, presented by One Nation Senator Pauline Hanson and supported by Labor, occurred during a morning dominated by debate around a bill to strengthen the scheme's privacy provisions.
An earlier attempt by Labor to extend the opt-out for a further 12 months had been backed by the Greens but not the Coalition.
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The My Health Record opt-out deadline has been extended. Here's what you need to know

ABC Science
By technology reporter Ariel Bogle
14 November, 2018
The Senate voted to delay the deadline, and although the amendment needed to return to the House of Representatives to be formally adopted, Mr Hunt endorsed the extension on Twitter.
If you don't make a choice by the new cut-off date, you'll be among the estimated 17 million Australians for whom a record will be automatically created in the Government's online database of health information.
The opt-out period to date has been tumultuous. Since July, software analysts, unions and family violence charities have raised privacy and security concerns about the system, while health groups have talked about its clinical benefits.
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Govt executes handbrake turn on My Health Record opt-out

Privacy issues still not fixed as millions of patients were about to be signed up without their consent
14th November 2018
The deadline for opting out of the troubled My Health Record will be extended until 31 January after an 11th-hour U-turn by the federal Minister for Health.
Millions of Australians would have been automatically signed up to the $2 billion system if they had not opted out by tomorrow.
But despite concerns from doctors and patient advocacy groups over the freedom of police and government agencies to access clinical information without a court warrant, the promised legislation to deal with the privacy holes has still not been passed by the federal Parliament.
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Penalties for My Health Record breaches of 'little comfort'

FULL INTERVIEW: Cyber-security expert Nigel Phair has told Sky News says the primary database for My Health Record at the Department of Health is unlikely to be the target of hacking, but 'issues remain around local GP's and health clinics' and their access controls. More than 1 million Australians have withdrawn from the controversial service, with the November 15 deadline to opt out fast approaching. Mr Phair says the tough penalties for misuse of patient records proposed by Health Minister Greg Hunt 'offers little comfort' to those who have already had their private information on the service looked at inappropriately.
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My Health Record phone line in meltdown as Labor pursues last-ditch push to delay deadline

Australians said they felt “angry and helpless” this morning as a crucial deadline loomed - before a last-minute intervention.
Charis Chang and Sam Clench
news.com.au November 14, 201812:59pm
The My Health Record phoneline was in meltdown today as people who wanted to opt-out of the controversial scheme scrambled to make their choice known.
The Senate has just voted in favour of an amendment, proposed by One Nation leader Pauline Hanson, to extend the deadline for opting out from tomorrow to January 31.
Ms Hanson’s motion was carried on the voices. The government did not try to oppose it.
It is welcome news for many Australians who were unable to opt out this morning.
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Acute challenge for health system

  • By Jonathan Stern
  • 12:00AM November 13, 2018
Although radical advances have been made in areas such as medicines, robotic surgery and implants, the healthcare sector continues to wrestle with one major challenge: patient records. While technology has dramatically improved standards of treatment and care, it’s yet to have a similar positive impact when it comes to achieving a single view of patients.
The challenge is particularly acute when patients are treated by multiple care providers or in different facilities. For example, an individual might be treated in an emergency unit, be transferred to a hospital, and then receive follow-up care from a general practitioner in another city. Accessing the patient’s medical history at each step and updating it with details of current procedures and treatments is a complex and unwieldy task.
It’s a challenge that’s also shared by organisations outside the medical sector, where fewer than one in ten ever succeed in achieving a 360-degree view of their customers. Like hospitals, they struggle with managing data stored in multiple formats across cloud, on premises and hybrid systems. According to MuleSoft’s Connectivity Benchmark Report, organisations on average are using 1,020 individual applications across their business, but only 29 per cent are currently integrated or connected together.
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Labor turns up the heat on My Health with push to extend deadline

By Dana McCauley
Pressure is mounting for Health Minister Greg Hunt to suspend the government's My Health Record roll-out, with Labor to move a motion in the Senate on Wednesday extending the opt-out period beyond the Thursday deadline.
"We will seek crossbench support to amend the government’s legislation to extend the opt-out period for a further 12 months – in line with a key recommendation of the recent Senate inquiry," opposition health spokeswoman Catherine King said.
About 17 million Australians will be automatically enrolled in the e-health system if they do not opt out by Thursday.
Mr Hunt has refused to further extend the opt-out deadline, after already giving Australians an extra month to decide.
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My Health Record: What about Australians without internet access?

The opt-out date for the national online health system, My Health Record, is drawing closer, and rural health workers say it has not taken regional communities into account.
As an electronic system, access to digital devices, internet connection, and understanding of digital technology are prerequisites to interacting with the system. Yet, rural Indigenous communities both lack digital literacy skills, and struggle with slow and unreliable internet connection.
Rural health workers are working to improve general understanding of the system, so individuals can decide if they want to opt-in, or out.
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/ Published in MEDIA, NATIONAL MEDIA

Senate Calls On Government To Extend My Health Record Opt-Out Period

The Senate has today called on the Morrison Government to extend or suspend the opt-out period of the My Health Record.
A motion co-sponsored by Labor Senator Murray Watt passed the Senate on Monday with strong support from the crossbench.
The motion calls on the government to “extend or suspend the opt-out period until the legislation and any amendments are passed, outstanding privacy and security issues are addressed and public confidence in this important reform is restored”.
The My Health Record – originally established by Labor as the Personally Controlled Electronic Health Record – promises huge benefits to Australians who choose to participate.
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November 14 2018 - 8:00AM

My Health Record: what is it, and the case for opting in – or out

What is My Health Record?

My Health Record (MHR) is an online summary of your key health information compiled by you, your healthcare providers and Medicare.
This can include details of your medical conditions and treatments, medicine details, allergies, and test or scan results.
Healthcare providers like doctors, specialists and hospital staff may also be able to see your MHR when they need to, including in an accident or emergency.
Australians have until November 15 to opt out of the My Health Record. If you don’t opt out, a record will be automatically created for you.
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What’s happening with the legislation for My Health Record?

Shortly after the start of the opt-out period, the Federal Government announced they would move amendments to the My Health Record legislation. Those amendments would make it so that when someone cancels their record it would be deleted instead of archived by the government, and that any access to a person’s record by law enforcement or another government agency would require a court order.
Those amendments passed the House of Representatives, and are due to be voted on in the Senate on 13 November 2018. The implementation of the ability to delete records is expected to be 7 December 2018, as stated by the ADHA at the recent Supplementary Budget Estimates hearing. You can see the amendment and some proposed amendments to it here: https://www.aph.gov.au/Parliamentary_Business/Bills_Legislation/Bills_Search_Results/Result?bId=r6169 (link is external)
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Is The Grass The Same Colour? Reflections On National Governments Implementing Health Care Initiatives

10.1377/hblog20181106.371884
Picture it: the federal government is about to move forward with a major new and controversial health care initiative, and on the first day, the website crashes, government help desk lines light up, and angry tweets and memes ensue.
For some readers, this description likely evokes memories of the launch and subsequent crash in 2013 of the website HealthCare.gov, the federal portal for consumers in thirty-four states that had not set up their own exchanges under the Affordable Care Act (ACA).
But a similar scene played out in the summer of 2018 in Australia, as the Australian government rolled out a national electronic health record (EHR), My Health Record. Unless Australians opt out of this initiative during a specific period, the government will create a My Health Record on their behalf. But on that July 16, the start of the opt-out period, the system crashed: “call centre operators were forced to use the public facing portal after their own back-end systems apparently collapsed.”
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Uncertainty looms over MyHealth deadline

13 November 2018 — 12:05am
Australians will have to make a decision this week about whether to opt out of the federal government's My Health Record database even though some of the final details of the program are not yet clear.  The government’s handling of such a fundamental change could have been more reassuring.
Although the deadline for opting out is Thursday the legislation is still not passed. Health Minister Greg Hunt is likely to win support for two major changes: the elimination of a loophole that might have allowed family-violence perpetrators access to information about women and children in hiding from abuse; and a sharp increase in penalties for misuse or misappropriation of data.
But it appears Mr Hunt has honoured a pledge to enact changes recommended by a Senate inquiry to safeguard information, for example, to guarantee it cannot be commercialised or privatised. The ALP wants several other amendments, however, such as a delay of the deadline and a review of the privacy issues of whether parents can see their children's records after the age of 14.
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Australians need more time to opt-out of My Health Record, say politicians

November 12, 2018
Australia’s Senate has passed a motion calling on the government to extend an opt-out period for its controversial My Health Record scheme, which has been dogged by concerns about privacy.
All Australians who have not opted out by Thursday will have a My Health Record automatically created in their name, but the vote aims to give more time for people who may have been struggling to contact authorities because of high demand.
The Guardian reported that the motion calls for the opt-out period to be extended ‘until the legislation and any amendments are passed, outstanding privacy and security issues are addressed and public confidence in this important reform is restored.”
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My Health Record: Should you opt out?

There are just days left until the deadline to opt out of the My Health Record system, so here is everything you need to know about the scheme.
news.com.au November 12, 20182:37pm
There’s been a lot of confusion around the My Health Record scheme but time is running out for those who want to opt out.
People have until Thursday, November 15 to make their choice known, otherwise a record will be automatically created for them.
About six million people are already using the system and about 1.15 million have decided to opt out. About 300,000 have opted in and about 17 million are expected to be automatically enrolled once the deadline passes.
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12 November 2018

Calling time on healthcare’s digital carpetbaggers

Posted by Jeremy Knibbs
Digital transformation is very big business these days. There isn’t a “Big C” consultant in town which hasn’t locked onto big business and government in some way to take the more cashed-up (and sometimes senseless) on a journey with their teams of “smartest people in the room”.
Healthcare has been, in relative terms, a slow starter in terms of the digital-transformation game. It’s a complex market fraught with regulation, risk, emotion, culture legacy, rapidly changing technology and fragmented and legacy-bound data and systems.
But most firms see the size of the prize. And it’s a whale of a market, if you can manage to get a harpoon into it. It’s much bigger than the finance market, when you think about it. If you put the federal department of health together with each state health department, and sprinkle in some cross-governmental agencies, you have a corporation that makes Telstra look like a minnow.
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ADHA privacy boss reportedly quits as My Health Record faces first big test

There's a 'pattern of not listening' to privacy and security experts, reports claim as the first batch of My Health Record legislative amendments hits the Senate on Tuesday.
By Stilgherrian for The Full Tilt | November 12, 2018 -- 01:01 GMT (12:01 AEDT) | Topic: Security
The director of privacy at the Australian Digital Health Agency (ADHA), which runs the My Health Record system, resigned last month over privacy concerns, according to a report by Fairfax Media.
While the director, Nicole Hunt, declined to comment, two sources close to her "confirmed that she had left the business out of frustration that privacy and security concerns her team had raised with senior management were often ignored", Fairfax wrote.
The report added that privacy staff and experts had not had their advice listened to, which is part of a pattern of not listening at senior levels at ADHA and within Health Minister Greg Hunt's office.
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My Health Record 'overlooked' Australians without internet access, says a rural health worker

12 November, 2018
Rural health experts are concerned the Federal Government has overlooked how individuals and medical practitioners will manage a digital health record in areas with little internet connectivity.
Aboriginal medical organisations have been working to ensure those without internet access know they will have a My Health Record and have the means to opt-out.
The CEO of the Kimberley Aboriginal Medical Services Vicki O'Donnell said that while the Australian Digital Health Agency took some measures to inform health care practitioners working in remote areas, there was an initial oversight on the complex needs of educating and empowering Australians with limited digital literacy.
"The concern was that our mob were not informed of their records going up into the cloud, they had no idea of what part of their record was in the cloud and they had no information about how they could opt out," she said.

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Poll on the Doctor’s Portal

Poll

My Health Record: staying in or opting out?
  • Opting out (72%, 235 Votes)
  • Staying in (28%, 90 Votes)
Total Voters: 325
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12 November 2018

My Health Record part 2: the ethicist's view

Paul Komesaroff
THE My Health Record debate has evoked strong feelings across the country, with critical comments focusing unexpectedly not on the health benefits of this major social project but on its risks.
On reflection, this may be less surprising than it first seems. For years, the development of a universal electronic health record in Australia has been plagued by contradictions. On the one hand, there has been consensus that the current mix of different platforms unable to communicate with each other is expensive, inefficient and dangerous. On the other hand, despite years of work and huge investment (nearly $2 billion over 6 years), the uptake by the community of the My Health Record (MHR) has been frustratingly limited.
The recent explosion of interest in the MHR was provoked by the government’s efforts to increase the number of people included in the system by switching the method of joining from “opt-in” — whereby individuals had to choose actively to sign up — to “opt-out” — whereby if they did nothing, a record would be created regardless of their wishes. This strategy largely backfired, stimulating resistance and hostility rather than the acceptance and goodwill that were presumably intended.
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12 November 2018

My Health Record part 1: the GP view

Karen Price
GPs Down Under
This is the 11th article in a monthly series from members of the GPs Down Under (GPDU) Facebook group, a not-for-profit GP community-led group with over 6000 members, which is based on GP-led learning, peer support and GP advocacy. This article accompanies another in this issue, by ethicist Professor Paul Komesaroff.
THE GPDU administrative team has overseen critical debates both for and against the My Health Record (MHR). Many of these issues are summarised in a blog by Dr David More. There are many further complex technical and privacy concerns discussed on technical forums. Some of the ethical issues and the social contract that the government has with the population are discussed by Salinger Privacy.
Our experiences in general practice with our patients suggest that these complex issues are not well known by many patients. Some patients don’t know about the MHR at all and some do not know about the opt-out period, which will finish on 15 November 2018. “Informed consent” would therefore seem to be a questionable process in this context.
The utility of MHR and the consent process are two very different parts of this discussion. While it is laudable to aim for full interoperability of medical records between medical teams, the utility of this iteration of the MHR remains questionable. Reference is often made on the GPDU forum to an “‘uncurated’ drop box of PDF files with unproven clinical utility”. There are also the concerns regarding “mission creep” and the untested secondary, and opaque uses of data by other organisations. Without a very rigorous consent process, there is the potential for harm for many vulnerable population groups, which sits at odds with the notion of primum non nocere. Thus, in practice, the MHR seems a long way from delivering the ideal of a fully implemented successful project involving engaged stakeholders.
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A health revolution or the biggest risk to privacy Australians have ever seen? Why the digital rollout of 17 million medical records comes with big risks - and you have only days to opt out

  • More than 17 million Australians to have all medical records online by Christmas
  • 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 husband or boyfriend could access data  
  • Government has flagged five years' jail, $315,000 fines for illegal data access
It's being billed as the biggest overhaul of Australia's health system in a generation - a long-overdue move that will make it easier for doctors to more accurately diagnose their patients. 
By the end of this year, 17 million Australians will have all their private medical records uploaded online as part of the My Health revolution - unless they formally object by November 15.
While the Government is talking up the amazing benefits, there are growing fears the details of individuals could fall into the wrong hands - including those of domestic violence sufferers into the hands of their abusers.
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Practioner expresses concern over My Health Record

As the deadline to opt-out of My Health Record fast approaches, Dr Con Costa feels it's his responsibility to inform the community of the other side
Anastasia Tsirtsakis
Controversy surrounding My Health Record continues, as the deadline to opt out of the digital database fast approaches.
Despite a senate inquiry into the matter recommending that it be postponed for 12 months, supported by Labor and the Greens, the coalition has chosen to go ahead with its plan giving Australians until 15 November, after which around 17 million Australians will automatically have a health record created for them.
It will include their medical data from the past two years including every doctor they have visited, medical conditions, pharmaceutical data, and pathology results – all of which will automatically become available to some 900,000 medical practitioners across the country – a reality that concerns Dr Con Costa.
The outspoken Sydney-based practitioner says it could have long-term implications on patients if the data gets into the wrong hands.
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  • Updated Nov 11 2018 at 5:13 PM

Start-up investors slam roll out of 'My Health Record'

Leading start-up investors have criticised the federal government's "disastrous" rollout of the My Health Record system aimed at digitising medical records, saying the policy instability is crushing innovation.
Australian health IT start-up Tyde is the creator of the first consumer-focused app – a single point to access and manage records and appointments that can join the entire family's health records together – for the federal government's My Health Record that is being rolled out by the Australian Digital Health Agency.
All Australians will have a My Health Record created automatically  unless they opt out by November 15, which has sparked fears over privacy and safety of health information.
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Comments welcome!
David.

The Spectator (Australia) Reveals The Truth On The #myHealthRecord.

This is on the cover of the magazine.


Here is the link to the associated article written by Terry Barnes a former Health Department bureaucrat and conservative commentator.

https://www.spectator.com.au/2018/11/very-public-health/

Enjoy the article - well worth a read for a conservative take on the #myHealthRecord.

David.

Monday, November 19, 2018

Weekly Australian Health IT Links – 19th November, 2018.

Here are a few I have come across the last week or so. Note: Each link is followed by a title and a few paragraphs. For the full article click on the link above title of the article. Note also that full access to some links may require site registration or subscription payment.

General Comment

Well this has been an amazing week as we saw the surrender of this dying Government to common sense and extend the myHR opt-out period with the support of Senator Pauline Hanson who would not know a myHR if it bit her. What was all that about and what does she want in return do you reckon?
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Senate passes motion calling for extension of My Health Record opt-out period – as it happened

The Senate has just passed a Labor motion with crossbench support calling on the government to extend the opt-out period for the My Health Record rollout.
All Australians who have not opted out by 15 November (Thursday) will have a My Health Record automatically created in their name, sparking fears from privacy experts that the public has not had sufficient time to opt out as demand increases.
The motion calls for the the opt-out period to be extended “until the legislation and any amendments are passed, outstanding privacy and security issues are addressed and public confidence in this important reform is restored”.
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My Health Record phoneline in meltdown as Labor pursues last-ditch push to delay deadline

MILLIONS of Australians are about to be signed up to a controversial scheme, despite a last-minute push for a delay.
Charis Chang and Sam Clench
THE My Health Record phoneline is in meltdown as people who want to opt-out of the controversial scheme scramble to make their choice known.
Adelaide father-of-two, who wished to be known only as Ben, said he and his wife had been trying to get through on the phoneline for days.
“My wife has been on hold for an hour and it has just dropped out,” he said.
“I’ve been on hold a couple times and it has dropped out, including this morning. I was on hold for 15-20 minutes before it dropped out.”
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My Health Opt-Out Deadline Extended To January 31 As Website Crashes Under Demand

Josh Butler

10 daily Senior News Reporter

The Senate has voted to extend the My Health Records opt-out period to January 31, as experts say privacy issues still need to be addressed.

My Health is a new database from the Australian Digital Health Agency to keep track of your health information, giving access to medical staff. The idea is your information won't get lost or overlooked if you move between different doctors or medical facilities, with the online records allowing staff to check on allergies, medication, medical conditions and test results.
The system has been under the microscope since the opt-out period began in July.
Opting out was only meant to be available until October.
However, outrage from privacy and health groups -- as well as Labor and the parliament's crossbench -- over how records could be accessed, and by who, as well as calls for greater public education around the system, saw the government rush through changes. Privacy protections were tightened, and the opt out period was extended to November 15.
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Privacy concerns prompt My Health Record opt-out extension

  • 2:41PM November 14, 2018
The Senate has backed a more than two-month extension for Australians who want to opt out of My Health Record, as an insurance lawyer warns it’s a matter of “when, not if” the system will be breached.
Crossbench senators backed a motion to expand the opt-out period to January 31, after a Labor motion to expand the opt-out period by 12 months failed.
Health Minister Greg Hunt had prolonged the opt-out period by a month after ongoing concerns about personal data shared between doctors could be at risk from cyber attacks and privacy breaches.
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Hidden conflict: My Health Record boss privately giving advice to health firms

By Esther Han
15 November 2018 — 12:00am
The chairman of the agency responsible for the bungled My Health Record rollout has been privately advising a global healthcare outsourcing company.
The Herald discovered the relationship between the UK based government contracting giant Serco and the Australian Digital Health Agency (ADHA) chairman Jim Birch after obtaining internal documents that detail the board members' conflicts of interest.
The revelation comes as federal Health Minister Greg Hunt was forced to extend the My Health Record opt out period after a compromise deal with the Senate crossbench and a last minute meltdown of the website left thousands of Australians struggling to meet the original deadline.
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How do you get the best out of online booking systems?

Doug Hendrie 13/11/2018 1:16:26 PM
RACGP eHealth experts say the careful management of online appointment systems is essential.
Online appointment systems have real benefits – but also complications to manage.
People in 2018 are accustomed to doing almost everything online, from buying a plane ticket to signing up to parent–teacher interviews.

Unsurprisingly, that means many patients expect to be able to book their GP appointments online.

But these increasingly popular appointment-booking systems must be well managed to ensure the best results for patients and doctors, say two RACGP eHealth experts.

Dr Rob Hosking, Chair of the RACGP Expert Committee – Practice Technology and Management (REC–PTM), told newsGP that online appointments have genuine benefits – but also challenges to overcome.
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The top takeaways from HIMSS AsiaPac18

Hafizah Osman | 12 Nov 2018
Health IT heavy hitters from across the globe descended on Brisbane last week, for the HIMSS AsiaPac18 conference and exhibition, bringing together an extensive roster of industry experts and leading thinkers.
Themed Healthcare Anytime, Anywhere, this year’s conference was the platform for many topics that are affecting the healthcare space, as well as key insights to be shared to improve operations in this space. 
A major milestone in Australian healthcare history, two local digital healthcare pioneers were recommended for their digital efforts at the event
UnitingCare Queensland’s Saint Stephen’s Hospital in Hervey Bay and the Royal Children's Hospital (RCH) outpatient service division in Melbourne were praised for having attained HIMSS Electronic Medical Record Adoption Model (EMRAM) Stage 7 accreditation. 
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Healthy body of evidence for AI: Murray Brozinsky

  • 12:00AM November 13, 2018
It is now a matter of when, not if, artificial intelligence is widely used across the healthcare system, says technology strategist Murray Brozinsky, who adds it will drive down costs and improve patient outcomes.
US-based Mr Brozinsky, in Sydney to attend CBA’s Future of Healthcare conference, said the convergence of conversational AI with sensors and remote monitoring would significantly improve patient outcomes.
He explained that conversational AI asked the patients questions such as how they were feeling or how a wound was healing, while connected devices were checking signs such as weight and blood pressure via remote sensors.
 “By collecting biological information with what the patients are revealing through conversational AI, healthcare professionals get a very good picture of what is happening with that patient on a continuous basis,” Mr Brozinsky said. “These technologies are at an inevitable point because when you look at the people who use it, they love it. The data is pointing to improved outcomes and lower cost.
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Any health data for sale? Google is ready to slurp it up

If Australian health data brokers are looking for a buyer with plenty of money, then they need look no further than the world's biggest search engine.
Google has indicated that it will now turn its attention to mining health data after folding its DeepMind Health unit into the main company and getting rid of the independent review committee that was part of the unit.
But DeepMind has, in the process, broken a pledge which it made to Britain's National Health Service, with whom it worked, that "data will never be connected to Google accounts or services”.
"We commit to only using patient data to help improve care, under the instructions of our partners, who will continue to act as our data controllers at all times," DeepMind said at the time.
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Australia : Medical sector vulnerable to health data cyber attacks

By AIR team | 16 Nov 2018
Medical providers are urged to take precautions in the lead-up to the deadline for the digital electronic health record system My Health Record, a leading health insurance lawyer has warned. Barry.Nilsson. partner Robert Samut said under current data protection laws in Australia, the onus on a medical provider is to take all "appropriate measures" to protect a patient's health data.
“A cyber criminal is able to sell personal health information for far more on the black market or the dark web than a credit card,” said Mr Samut. “With medical information, cyber criminals are able to gain access to prescription medication, receive medical care, access financial data and steal a person’s identity.”
The warning comes as the deadline to opt out of the controversial My Health Record was extended to 31 January 2019 by the Federal Health Minister Greg Hunt.
According to figures released by the Office of the Australian Information Commissioner during April to June 2018, the largest source of reported data breaches was in the private health sector (20%). The second largest source was the finance sector (15%) followed by the legal, accounting and management services sector (8%), the private education sector (8%), and the business and professional associations sector (6%). Mr Samut said the data showed that it isn’t a matter of “if the data would be hacked, but when”.
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Diagnostic dunny just the start of biological revolution

  • 12:00AM November 17, 2018
American bioscientist Raymond McCauley calls it the toilet of the future, one full of gene sequencers, which will make it the most networked appliance in the home.
“It will be able to look at your cells, the cells of what you eat, what infects you and then process it all on the cloud. Then we will send emails to you, your doctor, your nutritionist, your spouse and probably the people trying to sell you things,” he told The Australian after presenting at the Sohn Hearts & Minds investment conference.
“Not only will we be able to sense the health of your body and diet, we will be able to provide tips such as ‘You’ve really got to stop eating chorizo’.”
He says a South Korean entrepreneur, whose family has a toilet manufacturing empire, has already been developing a diagnostic toilet.
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Cloud move means sky's the limit for Australian genome research

The human genome consists of seven billion DNA base pairs and it takes 100GB to represent the unique sequence for a person. Australian National University researchers have turned to the cloud to enable clinical applications.
The Human Genome Project was a vast long-running and internationally collaborative project to determine the sequence of nucleotide base pairs that make up human DNA, and identify and map all the genes of the human genome, both physically and functionally. In fact, it is the world’s largest collaborative biological project across all of history.
However, it’s massive. Who’d have thought humans are so complex? With a genome of seven billion DNA base pairs, it takes 100GB to store the unique genetic sequence for any individual human being as a string of text using the letters A, T, C and G that refer to the bases – adenine, thymine, cytosine and guanine.
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Doctors raise alarm over first TripAdvisor style website for healthcare

Sue Dunlevy, National Health Reporter, News Corp Australia Network
November 15, 2018 8:00pm
Exclusive: Health funds have been accused of trying to influence which surgeons your GP refers you to under a controversial new TripAdvisor style online referral system.
Doctors are concerned the new service that will be provided via medical software on the desktop computers of all GPs from February could be the slippery slope to the introduction of US-style managed care.
But the CEO of health practitioner comparison website Whitecoat which is running the service says it will help patients find the best performing surgeons with the lowest out-of-pocket expenses.
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Clarifications about the FHIR Trademark

Posted on November 16, 2018 by Grahame Grieve
HL7 owns the “FHIR” ®  trademark (along with the FHIR flame icon). While the specification itself is licensed under Creative Commons Public Domain, and can be used in anyway possible, the Trademark is not public domain; HL7 defends the trademark carefully.
What that means is that anyone can use the term “FHIR” to refer the FHIR specification – that’s called nominative use – it’s naming the thing that FHIR identifies. Note that HL7 asks that people use (R) along with the FHIR mark, at least once). But if an organisation uses the word “FHIR” to refer to something of their own, this is not nominative use, and they require written permission from HL7 to use the trademark in this fashion.
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Australia wins bid to host 15th International Conference on Nursing Informatics

HISA and Nursing Informatics Australia (NIA) have won the bid to host the 15th International Congress in Nursing Informatics in Brisbane 2020, in conjunction with HIC 2020.
The conference, founded by the International Medical Informatics Association (IMIA), will take place on 26-29 July 2020.
Stay up to date with the latest developments, including expressions of interest to present, registration, and program announcements by clicking here and selecting the NI 2020 option.
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  • Updated Nov 15 2018 at 3:20 PM

Navis Capital Partners makes biggest ever investment, buys Australian health care company

Asian private equity firm Navis Capital Partners has signed its biggest ever deal. 
It is understood Navis Capital, which was founded in Kuala Lumpur in 1998 and is headed locally by Phil Latham, has acquired medical supplies business Device Technologies for a price just north of $700 million. 
A deal was signed on Thursday, sources said. It's believed Navis Capital will invest from its own Asia-based funds and will seek to complete the deal before the end of the year.
It is Navis Capital's biggest deal in Australia and globally. The firm's best known locally for formerly owning clothing brands business Retail Apparel Group and Guardian Early Learning, and has traditionally written equity cheques worth up to $100 million. 
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Phishing email identified by Australian Digital Health Agency

12/11/2018
The Australian Digital Health Agency has identified an email phishing campaign that contains a link to download malicious software (malware) on a user’s device.

Initial assessment indicates only 4 out of 57 anti-virus products detected the zip file as malicious. The malware opens a back door and steals passwords and connects to a command and control centre and also has the ability to spread to other devices.

The email subject contains a fake summons to attend a court hearing or trial and also includes a link to a PDF document hosted on Google Docs.

The Australian Digital Health Agency have provided a Digital Health Cyber Security Alert with some recommended actions by IT departments and useful references.

If you have feedback or information you wish to share about this matter, please contact the Digital Health Cyber Security Centre at cyber-incidents@digitalhealth.gov.au.
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Canterbury transfers one million patient records to SI PICS

Monday, 12 November 2018  
eHealthNews.nz editor Rebecca McBeth
More than one million patient records have been transferred to Canterbury DHB’s new patient management and administration system, the South Island Patient Information Care System.
SI PICS went live across CDHB on 6 October.
Provided by Orion Health, it will eventually become the region-wide solution for patient management and administration across the South Island’s five district health boards.
The system went live at Nelson Marlborough DHB in May 2018. West Coast and South Canterbury DHBs will implement it in 2019, followed by Southern DHB, with all due to be live in 2020.
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Data retention: Centrelink, councils, Australia Post among organisations accessing ‘metadata’

Telco group reveal dozens of agencies accessing ‘metadata’
Rohan Pearce (Computerworld) 13 November, 2018 15:41
Telecommunications industry group Communications Alliance has revealed details of dozens of state and federal departments and agencies that are accessing so-called communications ‘metadata’.
The 2015 legislation that introduced the data retention regime authorised a list of “criminal law-enforcement agencies” to obtain warrant-free access to metadata. Those agencies included federal, state and territory police agencies, a number of anti-corruption bodies, Border Force, the Australian Securities and Investments Commission; and the Australian Competition and Consumer Commission.
However, last month at the hearing of an inquiry into the government’s bill aimed at enhancing police access to encrypted communications services, Communications Alliance CEO John Stanton said that a significantly larger number of organisations were accessing information kept by telcos to meet their data retention obligations.
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Greens flag AU$1.5 billion NBN policy, Aussie GDPR, data retention repeal

The Greens party wants to invest AU$1.5 billion to make the NBN more equitable, AU$100 million in video game development, and AU$63 million in digital inclusiveness, as well as repealing data retention and setting up a Digital Rights Commissioner and GDPR-esque laws.
By Corinne Reichert | November 14, 2018 -- 08:00 GMT (19:00 AEDT) | Topic: Mobility
Australia's Greens party has announced its policies across National Broadband Network (NBN) connectivity, as well as on digital rights across privacy and security, also calling for the mandatory data retention scheme to be repealed.

AU$1.5 billion NBN policy

Announced by Senator Jordon Steele-John on Wednesday night at Canberra Technology Park, the Greens party criticised the Coalition's NBN multi-technology mix approach to providing broadband across the nation.
The Greens party's NBN plan would see a AU$1.3 billion Federal Telecommunications Concession established; a AU$250 million NBN migration program to close the digital divide in regional areas; ensuring NBN infrastructure will remain publicly owned; and see the NBN rollout completed using "best-choice technology".
It would also make "quality" connectivity more affordable, and ensure regional telecommunications are "funded, fair, and fit for purpose".
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ACCC figures reveal telcos buying more NBN capacity

However, latest ACCC data doesn’t include impact of end of NBN Co pricing promotion
Rohan Pearce (Computerworld) 13 November, 2018 12:03
Figures released today by the Australian Competition and Consumer Commission reveal that the average NBN bandwidth per household increased in the three months to 30 September — from 1.66 megabits per second at the end of June, to 1.71Mbps.
However, the data on the increased capacity (CVC) purchased by telcos came ahead of a major NBN Co discount scheme ending, with the company last month warning that there may be some fluctuations in congestion levels on its network.
“It is important RSPs [retail service providers] maintain sufficient CVC capacity to ensure consumers get the service they have paid for, particularly in the busy period,” ACCC chair Rod Sims said in a statement.
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Time to ditch dud NBN

  • By Laurie Patton
  • 9:56AM November 16, 2018
The contrast could not be any starker. As warnings emerged that Australia’s telcos are seeing their profits squeezed by the end of NBN Co’s short-lived wholesale price discount, across the ditch came word that New Zealanders are about to see their broadband speeds greatly increase while the price of connecting to the internet comes down. How could this be?
Back in 2013 communications minister Malcolm Turnbull was ordered by prime minister Tony Abbott to “destroy” the NBN. As Turnbull fatefully decided to abandon a 21st Century fibre-based rollout — on flawed advice from a bunch of so-called mates — over in New Zealand they kept deploying fibre-to-the-premises (FTTP).
NBN Co was forced to effectively spin its wheels for months on end, as it reworked all its rollout plans in order to use Telstra’s ageing copper wires and run-down 25 year old pay TV cables. Meanwhile, Chorus New Zealand was busily perfecting ways to reduce the cost of fibre installations. These days it costs Chorus around 50 per cent per premises less than it did five years ago.
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Enjoy!
David.

Sunday, November 18, 2018

We Are Really At The End Of The Road With The #myHealthRecord. I Tweeted The Obituary A Day Or So Ago!

Here is the tweet.

Dr David More‏ @davidmore

Has anyone stopped to wonder why the #MyHealthRecord that was so flawless and ready for opt-out in June / July has needed so much legislative repair to get to be even half OK? Could a hubristic ADHA CEO and Board have anything to do with it and should they still be in a job?

3:01 PM - 16 Nov 2018

What I should then have gone on to say is that this whole fiasco must now be terminated as it has comprehensively failed and now needs totally re-imagined if it is to indeed proceed at all, and yes those who pushed for and created this disaster need to leave. It is hard to believe just how badly the Government has been let down by the ADHA and a Minister who did not seek independent advice on the issues he was facing.

Asking those who were accepting payments to support the system, is hardly the way to get neutral and unbiased advice on how to proceed. It is of note that many of these are now saying that "yes" change was and is needed as the program implodes.

Those opting out feel betrayed by a tin-eared and stubborn Government who would not accept they had many real and valid concerns, and termed calls for an Inquiry "a stunt".

Those who have been reading here for a while will know I am less than enthusiastic about the myHR project but I think it is fair to now call it out as a total cluster f..k. It has clearly been a mismanaged, misconceived and disastrously led program which needs vastly more than some legislative change to be made a success. Put simply it is doomed.

Among the key proximate contributing issues to this disaster - all attributable to the ADHA and its executive are:

1. A disastrously ill-conceived and targeted communications program.

2. A failure to be open and transparent about the risks associated with the program. The bipartisan political spin on supporting electronic health records makes one really wonder if they actually know what they are talking about.

3. An ill-conceived and ill-communicated switch from opt-in to opt-out, which has really spooked the public making them think of other mass data grabs and the risks associated.

4. Continuous and comical exaggeration of the possible benefits of the system in the absence of credible evidence.

5. A total failure to recognise the scale of the unpaid imposition of the system on clinicians.

6. Lying and deception as to the level of use of the current system and opt-out levels by concealing information.

7. A PR team at the ADHA who thinks the public does not recognise spin when it sees it. They do!

8. The ADHA just ignoring so much of the Australian population with the internet deprived, the very old and young and the remote just out of the loop.

9. The failure by the ADHA to understand the fundamental importance of specific consent and trust between doctor and patient.

10. Attempting such a dramatic change in an environment of public mistrust and cynicism and not facing this issue head on - rather than with pretty transparent spin.

In the more distant past the parents of this fiasco have been:

1. A total lack of a clear idea of what was /could be achieved by a National EHR and how this could best be implemented if a clear cut business case could be made.

2. Imposition of absurd political time-lines and technology choices on the prior PCEHR which meant is was handicapped from the start.

3. An inappropriate technology architecture for past and certainly current circumstances, where technological advance has made the myHR all but obsolete.

4. Gross political interference in many aspects of subsequent implementation.

5. A lack of clarity on what the system was for really. It is clear it is not a system focused on the needs of clinicians or patients so who is it intended to serve and why is the Government pushing so hard. Just what are they hiding?

6. A stupid and ominous stubbornness to accept that, as it is at present, the $2 Billion investment is now largely lost and needs to be written off.

7. A total failure to make a compelling case for either patient or clinician involvement with the system.

8. Conduct of reviews of the system by clearly biased proponents who possessed no special insight or knowledge.

There is a history to be written on this but can any-one really think that the program should continue without independent review, audit and assessment , and has lost virtually all the public trust it may have held.

It is clearly in its death throes and should be allowed to die quietly while totally new plans are made for what comes next. The current Board and CEO of the ADHA should also have nothing to do with the new National EHR Program, if we are to indeed have one.

Let’s be utterly clear, the present myHR is completely stuffed and we need to stop it before we all go blind!!

David.

AusHealthIT Poll Number 449 – Results – 17th November, 2018.

Here are the results of the poll.

Have You, Or Will You, Opt-Out Of The #myHealthRecord Before The End Of The Opt-out Period On Thursday?

Yes 93% (196)

No 4% (9)

I Have Not Decided 1% (3)

I Have No Idea 1% (2)

Total votes: 210

It seems that 90% or so of the well informed readers of this blog are outta here! That is a pretty large negative vote I would suggest.

Any insights on the poll welcome as a comment, as usual.

A really, really great turnout of votes!

It must have been a very easy question as only 2/210 readers were not sure what the appropriate answer was.

Again, many, many thanks to all those that voted!

David.