Note: I have excluded 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)
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How are GPs using My Health Record?
Monday 6 August 2018 5:52PM (view full episode)
Dr Ewen McPhee is a rural general practitioner who says My Health Record is invaluable to his practice.
He says it helps to provide continuity of care to people moving across the region who see multiple practitioners and don't necessarily keep good records.
Dr McPhee says there are legitimate concerns around privacy issues, especially for minors and people with dementia, and argues there's a need for further careful thought around how those areas are addressed.
Guest:
Dr Ewen McPhee
Rural General Practitioner
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Unions urge members to opt out of MyHealth Record
By Anna Patty
10 August 2018 — 12:10am
Uncertainty over the potential for employers to gain access to the private health data of workers from doctors has sparked fresh calls for a boycott of the new MyHealth Record system and warnings that current laws are unclear.
Unions have urged tens of thousands of members to opt out of the controversial system arguing that employer doctors - used for pre-employment health checks or insurance purposes - could get access to and pass on a worker's entire medical history under the new system.
The claim sparked a strong denial from the government and the My Health Record System operator, but legal experts said the unions could have a case because the laws governing access were spread across several pieces of legislation and the rules were unclear.
Tom Ballantyne, from Maurice Blackburn Lawyers, said doctors who examine employees would have access to their medical health records unless the worker changed their privacy settings.
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https://www.sydneycriminallawyers.com.au/blog/my-health-record-a-further-erosion-of-civil-liberties/
My Health Record: A Further Erosion of Civil Liberties
The Turnbull government oversaw the 2015 implementation of a system that allows 21 government agencies warrantless access to all citizens’ metadata, while last year, it announced a national facial recognition system that will allow all citizens’ ID photos to be matched with CCTV footage images.
The government is currently in the process of rolling out a national health data scheme that will automatically link all citizens’ private health information – which will potentially include genomic data – to a centralised system unless individuals opt-out by 15 October.
My Health Record is being spruiked as a system that will allow doctors convenient access to a patient’s medical history. However, privacy advocates and health professionals are warning of the security and privacy threats posed by the scheme, which allows for the secondary use of data.
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AMA 'monumentally' wrong to back My Health Record: Professor Kerryn Phelps
The AMA and RACGP should have been less enthusiastic before offering their 'breathless support', she says
9th August 2018
The AMA and RACGP’s public support for My Health Record has been a monumentally bad idea, says former AMA president Dr Kerryn Phelps.
Her comments follow Minister for Health Greg Hunt’s promise to redraft the legislation so that clinical records on the system are covered by the same legal protections as those held by doctors.
Under the current My Health Record Act (2012), the Australian Digital Health Agency can hand over a patient’s medical records to law enforcers and government agencies without a warrant, providing it “reasonably believes” the request is necessary to prevent a law being breached.
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The Bartone Ultimatum: – “Fix The My Health Record”
09 Aug 2018
During a private twilight meeting in Melbourne three weeks ago, AMA President, Dr Tony Bartone, put a strong demand directly to Health Minister Greg Hunt – fix the privacy provisions of the legislation or the My Health Record (MyHR) will remain in limbo for years to come.
Dr Bartone had made public his intentions a week earlier at the National Press Club in Canberra when he declared to journalists that he would do ‘whatever it takes’ to force the Government to take action to make the privacy protections of health information as watertight as possible in the digital health age.
The new AMA President stayed true to his word.
With the blessing and support of the AMA Federal Council, Dr Bartone, a Melbourne GP, took a four-point shopping list to the Minister – amend the Act to ensure health data is not disclosed without a warrant or court order; ensure that people who opt-out do not end up with a permanent MyHR; run a public information campaign; and extend the opt-out period.
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My Health Record — a flawed initiative
Information Technology Professionals Association (ITPA)
By Robert Hudson, President, ITPA
Wednesday, 08 August, 2018
By Robert Hudson, President, ITPA
Wednesday, 08 August, 2018
One of the biggest IT issues ongoing at present is the Australian Government’s My Health Record project. It was designed as an opt-in service, where you would have to explicitly provide a healthcare provider with authority to create a record on your behalf. The primary benefit of the service was that a ‘single source of truth’ copy of your medical records (or a summary of them) would be available to any health provider nationally. So if you were away from home within Australia and required treatment, your records would be available to medical professionals, who would be able to learn your medical history, allergies etc, with the idea being that you would receive better and more appropriate medical care as a result.
Unfortunately, the benefits of the service were not well sold to the public, and the percentage of people who had opted-in to the service was very low — so low as to make it largely useless. (Oddly, the current My Health Record website claims that 5.9 million Australians already have a record — so the take-up is already at approximately 25% of the Australian population.)
The current federal LNP government decided to change this, and passed legislation that meant that unless people opted-out of the service within a very small window of time, they would have a record created by default, and once that record was created, there was no way to delete it except by dying (records being kept for 30 years after a recorded date of death, or 130 years from birth if a date of death was not formally established and entered into the record).
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Using My Health Record data for research could save lives, but we must ensure it’s ethical
August 8, 2018 1.27pm AEST
David Hunter Associate Professor of Medical Ethics, Flinders University
There has been considerable debate about the merits and risks of the My Health Record (MHR) scheme – ranging from the deep inefficiencies in the current system, to privacy issues and control of data.
There has been less discussion of some down-the-track intended uses of this data for secondary purposes – such as for research.
A rich dataset of health information could be used in studies that generate enormous benefits to society, but medical research is carried out under strict ethical guidelines.
Unfortunately, a consent process where people are required to opt out rather than opt in doesn’t meet ethical standards for research.
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My Health Record: everything you need to know about the central database
Pilar Mitchell | August 08, 2018
Privacy concerns have some people opting out, but are do the benefits outweigh the
The deadline to opt out of My Health Record (MHR) is quickly approaching. Anyone who doesn’t choose to opt out by October 15, 2018 will have a digital copy of their medical records made and stored in a central database.
It will hold things like medical history, mental health plans, prescribed medications and can be shared across GPs and other health care providers.
There are good arguments for centralising this information, especially for people with ongoing health issues. But there are also legitimate concerns about privacy and security. Should you and your family opt out or join the nearly six million Australians already in the database?
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Cyberattacks and the Value of Medical Data Blog
On July 20, 2018, SingHealth, a Singapore healthcare institution consisting of four public hospitals, five national specialty centers and a network of nine polyclinics, reported that it had been the target of a cyberattack resulting in the information of around 1.5 million individuals being compromised.
This is not an isolated incident as statistics compiled from the U.S. Department of Health and Human Services (HHS) indicate that more breaches involving healthcare data were reported in 2017 than any other year since records first started being published. In Experian’s 2018 Data Breach Industry Forecast, Experian noted that from January through June of 2017, 233 healthcare data breach incidents were reported to HHS, the media or state attorney generals. For the 193 attacks for which there are numbers, 3,159,236 patient records were affected. In a 2016 Data Breach Industry Forecast, Experian predicted that healthcare companies remain one of the most targeted sectors by attackers, driven by the high value that compromised data can command on the black market, along with the continued digitization and sharing of medical records.
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The troubling implications of My Health Record's genetic info plans
By Wendy Bonython
8 August 2018 — 12:00am
It is not surprising there are plans to include genetic information, in the form of genomic pathology reports, in My Health records.
Precision medicine – using insights obtained from genomics and other "big data" analysis – enables treatment and prevention strategies to be customised, potentially revolutionising healthcare. The government has committed financially to precision medicine. Genomic pathology testing is an increasingly important tool in the diagnostic arsenal. The inclusion of genomic testing results in the My Health record is consistent with inclusion of other pathology test results, increasing the amount of clinically useful information available to healthcare providers in My Health, but also contributing to a valuable research dataset.
But genetic pathology test results are fundamentally different from other pathology results. The shared nature of genetic material – received by individuals, along with their siblings, from their parents, and in turn transmitted to their children – means that information about the genetics of a patient necessarily reveals, or allows educated inferences about, the genetics of other people not the subject of the My Health Record.
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Making an extra effort to improve My Health is worth pursuing
7 August 2018 — 7:18pm
When Canberra man Matthew Toohey, who has had three rounds of brain surgery, told reporter Andrew Brown that he has opted out of the federal government's My Health Record scheme, an alarm should have sounded somewhere in the nation's capital.
The benefits that are supposed to flow from the scheme – which has run for six years without any significant security breach – are greatest for those with serious health problems and those from sections of society that struggle to engage with health services. As Adrian Pokorny, a doctor in the Northern Territory, pointed out, for many of these people having to opt in simply adds one more administrative barrier to much-needed care.
Mr Toohey did not question any of this. "Not enough has been done to assure us that the data will be secure and won't be used for purposes other than of health professionals," he said. "The concept is good, but the execution of it is poor."
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Not-for-profit sector can lead on data privacy
- 12:00AM August 7, 2018
The not-for-profit sector has an opportunity to lead from the front when it comes to data privacy, as public awareness of the issue takes centre stage in Australia, according to the latest analysis into data governance from Perpetual and Stanford University.
According to Lucy Bernholz, senior research scholar and director of the digital civil society lab at Stanford, Australians are finally starting to take the use of their data seriously. “Public attitude and awareness on this issue has changed dramatically, especially compared to three years ago when the government announced the census was going to be put online.
“But you look at the conversation around My Health Record and the government has had to change the law and it could very well be an election issue.”
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7:29pm, Aug 6, 2018 Updated: 8:03pm, Aug 6
My Health Record prompts concerns over storage of DNA data
Your risk of developing a certain type of cancer and susceptibility to particular mental health problems could be forever stored in the My Health Record online database.
This comes after a Fairfax report revealed that Australian genetic information company Genome.One is able to upload DNA data to My Health Record, which The New Daily later confirmed with federal Health Minister Greg Hunt’s office.
It has raised questions as to whether the thousands of Australian consumers who have purchased a home DNA kit could effectively upload their test results to My Health Record.
Biotechnology expert Dr Wendy Bonython told The New Daily it won’t be long before other companies also look at uploading data to My Health.
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Business playing Russian roulette with cybersecurity
- By Michael Connory
- 12:00AM August 7, 2018
Russian roulette is an interesting game of dare, jockeying against chance.
One bullet in a six-barrel chamber hoping the squeeze of the trigger isn’t a fatal shot.
And that’s exactly what Australian businesses are playing with our data.
The release of the OAIC notifiable data breaches second quarterly report last week revealed disturbing trends around the security of our information and what value is placed on its protection. None, it seems!
As harsh a comment as it may be, valuing protection can only ever be measured by commitment to invest in initiatives to ensure its safeguard. Information into our lives is now a biddable auction given the failure by businesses to secure our data.
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August 6, 2018 6:00 am | AEIdeas
Data privacy debacle down under: Is Australia’s My Health Record doomed?
Australia — the “lucky country” whose foray into building a government-funded nationwide fiber network has resulted in cost blowouts, uptake disappointments, regulatory wrinkles, and system redesigns — may be on the cusp of yet another government-funded, centrally planned, nationwide-coverage information and communications technology debacle. In the spotlight this time is the A$4 billion database of citizens’ health information, dubbed My Health Record.
The viability of the nationwide system is at stake. An unexpectedly large numbers of citizens have opted out of participating in My Health Record, as sufficient concerns have been raised about the security and privacy of the sensitive information the database holds. When the three-month opt-out window opened last month, the system crashed under the sheer weight of applications for the “right to be forgotten” by the giant government health data repository. The 1.9 percent trial defection rate indicated 500,000 Australians in total would opt out. Either they all chose to do so in the first few days, or the developers have vastly underestimated the extent to which citizens do not want to participate in the government-mandated system. The latter may well be a function of the high volume of bad publicity recently — with citizens likely getting the message “if in doubt, opt out.”
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Expert pours cold water on My Health Record genomics fears
Doug Hendrie 6/08/2018 3:28:14 PM
An RACGP e-health expert has poured cold water on fears that genomic data will not be safe if uploaded to My Health Record.
Genomic medicine is in the news.
Chair of the RACGP Expert Committee – eHealth and Practice Services (REC–eHPS) Dr Nathan Pinskier believes recent reports that genomic data would be uploaded to the government’s health data repository should not trigger concerns.
‘[Genomic data] is the same as other pathology tests. It goes to My Health Record based on consent. They’re not uploading the DNA, but just a summary of findings,’ Dr Pinskier said.
‘Consumers have control. They can upload or not upload – it’s up to them. If they want to remove the data afterwards, they can.
‘[Genomic data] is the same as other pathology tests. It goes to My Health Record based on consent. They’re not uploading the DNA, but just a summary of findings,’ Dr Pinskier said.
‘Consumers have control. They can upload or not upload – it’s up to them. If they want to remove the data afterwards, they can.
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ACOSS Welcomes Commitment to Protect Privacy of My Health Record
ACOSS welcomes the Federal Government’s commitment to make changes to the My Health Records legislation to protect the privacy of people with a My Health Record.
ACOSS believes that My Health Record has the potential to deliver better coordinated care and allow people more control over their health information. However, the current My Health Records Act 2012 fails to adequately protect the use of a person’s health information and is out of step with community expectations of privacy.
ACOSS CEO Dr Cassandra Goldie said: “The Minister’s commitment to make changes to the My Health Records Act to protect the privacy of people with a My Health Record is welcome news.
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- Updated Aug 6 2018 at 11:00 AM
Security fears are still too high, so I'm opting out of My Health Record
by Carlo Minassian
I've opted out of My Health Record and I'd urge anyone concerned about their privacy and security to do the same.
While the recent move to enshrine in legislation the need for a court order before releasing records to police or government agencies is positive for privacy, criminals don't care for court orders. To put it simply, not opting out of My Health Record before the October 15 deadline will expose your private health data to being hacked or compromised.
While ample assurances have been given by Health Minister Greg Hunt, much of these are based on claims of apparently infallible, "military-grade security" protecting our data.
My Health Record's biggest benefit is the greater accessibility it offers to Australians and their health care professionals. Ironically, it is this greater accessibility that makes the system so vulnerable.
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Privacy, Trust and My Health Record, or The Spy in The Consulting Room
This was first published in Privacy Unbound, the Journal of the International Association of Privacy Professionals ANZ (iappANZ) Edition no. 85, August 2018
1 Introduction
Dr Bernard Robertson-Dunn is an electronic and automation engineer, has a PhD in modelling the electrical activity in the human small intestine and has had over forty years modelling, architecting and designing large scale information systems, mostly in government environments.
These include the Departments of Health, Finance, Immigration, Defence Bernard has been following the progress of, and has contributed to, the debate on the My Health Record for over ten years. He has no association or affiliation with any vendor or government organisation. Bernard is chair of the Health Committee of the Australian Privacy Foundation.
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We need new ways to protect people in the digital era
By Dhananjayan Sriskandarajah
6 August 2018 — 12:18am
In an age of ever-advancing, ever-encroaching technology, how do we ensure that our basic rights are protected? New technologies and the speed of progress these days may have many positive impacts on our lives but the fact that they are poorly regulated and hardly understood by the public, poses serious threats.
In Australia, the importance and complexity of this issue is best demonstrated by the growing controversy surrounding the My Health Record system. Many Australians are sceptical of joining for fear that sensitive personal information could fall into the wrong hands and exploited. Hundreds of thousands have already opted out, in defence of their right to privacy protection. And despite government assurances, it’s clear more is required to address an increasingly concerned public’s need for cybersecurity.
So Health Minister Greg Hunt has announced changes to the legislation that will allow people to withdraw from My Health Record after the opt-out period ends and have their electronic health record deleted. Originally, all records were to be kept for up to 130 years, even after a patient requests they be deleted. Also, the authorities now cannot access information against a patient’s wish without a court order – a growing concern.
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Is it possible to delete information on My Health Record?
Experts say it is challenging to permanently delete information from a digital system. Image by Pixabay
Minister Greg Hunt stepped up and spoke about the My Health Record controversy, saying Australians can opt out and ask for their information to be deleted permanently. However, experts in the topic are concerned about his statements because deleting information from a digital system is a challenge.
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MyHealthRecord: Why this GP opted in
Authored by Linda Mann
I JOINED what was then the Patient Controlled Electronic Health Record, now known as My Health Record (MyHR), as soon as it was available. I won’t be opting out.
In addition to working in urban Sydney, I have worked in the Northern Territory since 2006, using the statewide (albeit very old) medical record, which has been instrumental in permitting continuity of care for patients who move around the NT. Of course, if they have care outside the NT, their treatment is blind to me.
I have been really impressed with the value of knowing who has had treatment already for a condition I thought I was seeing for the first time, of knowing what medications the patient is prescribed, in addition to the ones I thought I knew, and of having specialist access more easily.
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Sunday, 5 August 2018
Tell me again why the Turnbull Government is insisting My Health Record will become mandatory by the end of October 2018?
It is not just ordinary health care consumers who have concerns about the My Health Record database, system design, privacy issues and ethical considerations.
It is not just the Turnbull Government which has not sufficiently prepared public and private health care organisations for the nationwide rollout of mass personal and health information collection - the organisations themselves are not ready.
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My Health Record can store genomic data but critics say it's not ready
The federal government's My Health Record system is capable of storing genomic information, such as a person's genetic risk of developing cancer, which could turbocharge medical research but has intensified privacy and security fears.
Fairfax Media can reveal Sydney-based whole genome sequencing company Genome.One developed “necessary infrastructure” in order to upload highly sensitive genomic information onto My Health Records.
The Australian Digital Health Agency (ADHA), which for weeks has been deflecting privacy and data security concerns, handed the for-profit company $40,000 in September last year to support the development of the software.
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Comments welcome!
David.
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