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, 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.

6 comments:

Anonymous said...

The above does not paint a good picture David. It is almost as if the ADHA believed that if we speak they will come. For a bunch of people to have claimed to have run the length and breadth of the country discussing the system it would seem that they failed to do much listening. Perhaps the population would have been more trusting if the ADHA had been working with various colleges and advocacy group and respected members of the community that are well versed in health informatics.

Clearly the team at ADHA has caused enormous damage and ripple effects across a number of government agendas. That it might turn out to be a good thing.

Anonymous said...

Of coarse all this will be completely ignored. I would bet my life savings the ADHA is secretly meeting with private health insurers plotting a path forward to innovate ways to get hold of the data.

Anonymous said...

An over on the other channel things are not looking to good for Northern Beaches Hospital.

Anonymous said...

@5:59 PM no one in the Department would be so silly as to be meeting openly or secretly with private health insurers. That would be opening up a whole can of worms and the last thing the Minister or the LNP needs right now.

Anonymous said...

No one in the department! You might be correct. However the ADHA or at least Tim would and probably is. The department lost control of this long ago and I would guess the are struggling to get the boy back on a leash.

Anonymous said...

The federal Department of Health (DoH) has dropped a requirement that patients participating in the Health Care Homes trial have a My Health Record, despite it being a centrepiece of the trial model announced in 2016.

What a bunch of winners the ADHA are