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, December 04, 2018

Commentators and Journalists Weigh In On The MyHR Debate And Related Matters. Lots Of Interesting Perspectives - Week 20.

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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Media release - Opt in or opt out of My Health Record at any time in your life: Australian Parliament strengthens privacy protections of My Health Record

26 November, 2018 ADHA Sourced
The Australian Parliament has this morning passed legislation to strengthen privacy protections in My Health Records Act 2012 without debate or division.
The new legislation means that you can opt in or opt out of My Health Record at any time in your life. Records will be created for every Australian who wants one after 31 January 2019. After then, you can delete your record permanently at any time.
More than 6.3 million Australians already have a My Health Record and over 14,000 healthcare professional organisations are connected, including general practices, hospitals, pharmacies, diagnostic imaging and pathology practices. My Health Record supports the health and care of Australians who choose to have one.
Briefly, the changes will:
  • Allow Australians to permanently delete their records, and any backups, at any time.
  • Explicitly prohibit access to My Health Records by insurers and employers.
  • Provide greater privacy for teenagers 14 years and over.
  • Strengthen existing protections for people at risk of family and domestic violence.
  • Clarify that only the Agency, the Department of Health and the Chief Executive of Medicare (and no other government agency) can access the My Health Record system.
  • Explicitly require law enforcement and other agencies to produce a court order to access information in My Health Records.
  • Make clear that the system cannot be privatised or used for commercial purposes.
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Joint media release with Australian College of Nursing - Nurse champions for My Health Record

ADHA Sourced
The Australian Digital Health Agency, in collaboration with the Australian College of Nursing (ACN), has appointed six Nurse Champions to drive engagement with the My Health Record nationally.
“Our Nurse Champions will work with the Agency, ACN and the broader nursing profession to educate and enable nurses to use the My Health Record in their everyday practice,” said Australian College of Nursing CEO Adjunct Professor Kylie Ward FACN.
“The six Nurse Champions represent the nursing profession’s passion for digital health and the potential benefits it offers for improving delivery of quality health care in Australia,” said Adjunct Professor Ward.
“Our Champions work in a range of health settings with each bringing a different perspective of nursing. They will be a key resource for ACN and the Agency as we seek to better understand the needs of nurses and patients as My Health Record is put into practice.
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Whatever happened to ‘evidence based policy making’?

Alf Rattigan Lecture 2018

26 Nov 2018
Description
Few within government would deny that evidence-based policy-making is important to achieving good outcomes.  Australia’s history provides ample support for that. But it is also apparent that practice over the past decade has fallen short of the ideals espoused. 
In this, the third Alf Rattigan Lecture, Professor Gary Banks will consider why that has been so and what might be done, at the political and bureaucratic levels, to moderate the increasing tendency for policy to be made 'on the run’.
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Australians granted power to permanently delete My Health Record

By Robert Fedele ADHA Propaganda
November 29th, 2018|

Australians can now opt in or opt out of My Health Record at any time and permanently delete their records following the passing of new legislation in Federal Parliament this week aiming to strengthen privacy protections.


Every Australian who wants a My Health Record will have one created for them after 31 January 2019.
They will then be able to permanently delete their records and any backups at any stage.
Responding to community calls for stronger privacy and protections, The My Health Records Amendment (Strengthening Privacy) Bill implements a range of new safeguards for people who choose to create a digital summary of their key health information which can be shared across healthcare providers.
The Australian Nursing and Midwifery Federation (ANMF), along with other unions, made a submission to a Senate Inquiry investigating amendments to the controversial system.
The ANMF stated it supported an opt-out system and introducing a range of measures to tighten privacy and security including denying parties such as health or life insurers access to records.
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Seniors Learn About My Health Record

November 28, 2018 ADHA Propaganda
At EuroSCUG’s last meeting, Darren Marcus, Digital Health Officer at COORDINAIRE South Eastern NSW Primary Health Network, gave a talk on My Health Record. This is an on-line summary of each person’s key health information, bringing together medical conditions, allergies, medications, healthcare providers, and test results, all in one place
Darren showed members a short video which illustrated the advantages of setting up a My Health Record. It is a national system, private and secure, accessible at all times, and can be personally controlled. The owner can be alerted whenever the record is accessed, and can also opt out of joining the system, or cancel the record at any time.
Darren answered many questions from members, mostly centred around security. There are multi-layered and strong safeguards in place to protect the information including encryption, firewalls, secure login, authentication mechanisms, and audit logging. Strict rules and regulations apply as to who can access the records.
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The My Health Record system

Thursday, November 29th, 2018 
MEAA and other unions affiliated with the ACTU have raised concerns about the implementation of the My Health Record system.
The Australian Government is currently preparing to roll out a national centralised electronic health records system for all Australian residents. An online record will be automatically created for you unless you take steps to opt-out of this system before January 31 2019.
MEAA is broadly supportive of the principles behind a national system creating consolidated health records for patients and other users in the health system in Australia, however there are some concerns that have been raised by unions, health practitioners and other stakeholders. Ultimately, we want you to make an informed decision about whether to opt-out based on what is best for your health needs.
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My Health Record takes vital step forward

28 November 2018Media release
Australia’s health system takes a significant step forward now that Parliament has resolved questions concerning security and privacy of the My Health Record, the Consumers Health Forum says.
Australians have until 31 January 2019 to choose to opt out of the personal electronic health record and even after that deadline people will be able to delete their health record from the system at any time.
Legislative changes passed in Parliament this week strengthen privacy and other safeguards, including banning insurers and employers from access to individual MHRs, providing more privacy for teenagers aged 14 and over, strengthening protections against risk of domestic violence and restricting which authorities can access MHRs.
“The Consumers Health Forum has supported the “opt out” arrangement as a means of supporting the earlier roll-out of MHR across Australia than would have been the case if we had stuck with the “opt in” approach which was experiencing a more gradual take-up,” the CEO of the Consumers Health Forum, Leanne Wells, said.
“We acknowledge that the closer scrutiny of MHR in more recent months has exposed weak points and that there were genuine concerns among some people about privacy and security. 
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Hunt: My Health Record to be in ‘public ownership forever’

AAP
November 29, 2018 3:49PM

Topics

The My Health Record system will never be sold off in a cash grab, Health Minister Greg Hunt says.
With the opt out period for the program looming in January, Mr Hunt confirmed no one would be profiting off of it.
“Legislation was passed ... and I am very happy to inform it included a guarantee that My Health Record would be in public ownership forever,” Mr Hunt told parliament.
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House Of Representatives – Question Time – November 29, 2018

2:35pm
Kerryn Phelps, with her first ever quesiton, asks about the My Health Record, and the risk of patients’ data being monetised.
“Will the Prime Minister guarantee to provide the business case for the My Health Record database to this House in this sitting fortnight? This will be the final opportunity before the opt-out period ends on 31 January 2019, and Australians need to be assured about the true intentions of this program,” Dr Phelps says.
Sitting behind her, nodding along with her question, is the now former Liberal MP Julia Banks.
Health Minister Greg Hunt starts his answer by congratulating Dr Phelps on her victory in Wentworth.
“In relation to the My Health Record, legislation was passed unanimously through this House this week, on Monday, and I am very happy to inform that that included a guarantee that My Health Record would be in public ownership forever. There is no scope for revenue, there is no revenue which will be raised,” he says.
“So I’m happy to provide a guarantee that there is no capacity, there is no projection, and there is no revenue that is anticipated. I am also happy to provide the very documents which she is seeking.”
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Health Record attracts almost 52,000

Heidi Kraak  ADHA Propaganda
29 Nov 2018, midnight
Close to 52,000 Gippsland residents have signed up for a My Health Record, representing a third of the region's population, data from the 2018 annual report of the Gippsland Primary Health Network showed.
Gippsland PHN said 86 per cent of general practices and 68 per cent of pharmacies in the region are also now registered to use My Health Record three years since the new data collection system was introduced in Australia.
"Support and training continue as the Gippsland PHN engages these professionals along with allied health and specialists in the region," the primary health network said in a statement.
The number of Gippsland residents who are currently signed up with My Health Record represent a third of the region's current population of 143,033 based on the latest data by the Australian Bureau of Statistics.
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Platforms, not projects, key to executing DTA’s ‘Vision 2025’ strategy

By Darryl Carlton • 29/11/2018
The DTA’s role is to create a platform for digital transformation, not to promote individual projects. The projects belong to individual departments and agencies, argues Darryl Carlton.
Of overriding importance when reading the ‘Vision 2025’ strategy is to consider the role of the DTA.
Is the DTA the custodian of projects, or is it responsible for creating the conditions that will allow agencies, businesses and citizens to perform the actions that would be of value to them? This is unclear when reading the DTA 2025 Strategy and Vision document.
I am going to argue that the DTA has the role of creating a platform for digital transformation, and not for promoting individual projects. The projects belong to individual departments and agencies. The idea of building a platform is common to the successful internet companies. You build common and shared frameworks which can scale through open, published APIs. You create scale that, in this case, the departments can leverage.
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Australia needs integrated e-government, says security expert

Australia's move towards a digital government should be more of an integrated effort and should not be restricted in silos, a cyber security expert says, expressing scepticism about the ideas put forward by recently by Human Services and Digital Transformation Minister Michael Keenan.
Fergus Hanson, head of International Cyber Policy Centre at the lobby group Australian Strategic Policy Institute, said it would be better to have co-ordination between the three levels of government - local, state and federal - rather than provide digital services in little silos.
This was much better, both in terms of cost and security, as there would not be a single target for attackers, he pointed out. And it would avoid that great bugbear of public service: duplication.
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28 November 2018

ALP to keep pressure on health pain point

MyHealthRecord  TheHill
Posted by Julie Lambert
After its victory over the My Health Record legislation, federal Labor shows no sign of letting up on health as a pain point for the government.
The MHR amendments were rubber-stamped on Monday, after a battle in the Senate in which the government was forced to accept demands for stricter safeguards and tougher penalties for privacy breaches.
However, Labor’s health spokesperson Catherine King is maintaining a call for the Privacy Commissioner to conduct a review of the security settings available to patients who choose to keep a My Health Record.
The opposition party says the review is needed to ensure “an appropriate balance between utility for clinicians, patients and others such as carers, and privacy and security for individuals”.
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November 28, 2018 6:02 am

Legislative Changes Improve My Health Record

The National Rural Health Alliance – Australia’s peak rural health body representing more than 7 million Australians – has welcomed the legislative changes to My Health Record which have passed through Parliament.
Alliance CEO, Mark Diamond, said the changes protected the right of individuals, including teenagers and vulnerable groups, and improved the My Health Record program.
The new measures allow Australians to opt in or out of having a My Health Record at any time and provided increased security protections for people using the electronic record system.
Mr Diamond said the Alliance supported My Health Record, which was particularly important for people living in regional, rural and remote areas and often suffered from the tyranny of distance and isolation in accessing health services.
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My Health Record Changes: Too Little, Too Late?

Amendments to the Law Seek to Douse Privacy, Security Concerns Jeremy KirkNovember 27, 2018
Australia's Parliament on Monday passed legislation that strengthens privacy protections for My Health Record, the country's embattled digital medical records program. But questions remain about whether the changes go far enough to restore confidence in electronic health records.
The new changes, included in a bill called the My Health Records Amendment (Strengthening Privacy) Bill 2018, aim to assuage concerns that entities outside of care providers, such as employers and insurers, could gain access to records. Also, there were lingering questions about whether law enforcement agencies would need a court order to be allowed to obtain any records.
The amendment will allow individuals to delete their record at any time, reversing the original policy that allowed people to deactivate their record, although the government would retain a shadow copy of it for decades.
"These changes are in response to the Australian community's calls for even stronger privacy and security protections for people using My Health Record," says the Australian Digital Health Agency in a statement.
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Is the My Health Record technology out of date?

Hafizah Osman | 28 Nov 2018 ADHA Propaganda
The Australian Digital Health Agency (ADHA) has defended My Health Record from criticisms from a leading international ehealth figure that the system relies on outdated technology.
Harvard Medical School International Healthcare Innovation Professor Dr John Halamka told News Corp Australia that the $2 billion My Health Record was nothing more than “digitised paper” as it uses such “out-of-date” technology that crucial patient information on test results and diseases are unable to be read or shared by computers.
“The My Health record is a noble idea but the standard they chose is from 1995; it uses PDFs, it’s not computable, it is just digitised paper,” he told News Corp Australia.
However, an ADHA spokesperson told HITNA that the claim of My Health Record being based on outdated technology is incorrect.
“Over 100 clinical information systems are accredited to connect to My Health Record and they consume structured data such as SNOMED [Systematised Nomenclature of Medicine] codes on diseases and AMT [Australian Medicines Terminology] codes on medicines. This functionality is driving decision support and other logic in those systems through those computable codes,” the spokesperson said. 
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Just how many digital transformation strategies do we need?

By Nicholas Stuart
28 November 2018 — 12:00am
A week ago, Human Services and Digital Transformation Minister Michael Keenan dramatically unveiled this government's "bold vision for Australia's digital future" at the National Press Club.
Again.
It's not, of course, as if Keenan himself had previously launched the strategy, because he hasn't. Indeed, he's been in the job for less than a year – as was his predecessor, Angus Taylor; and his predecessor, Mitch Fifield; and his predecessor, James McGrath; and even his predecessor, Malcolm Turnbull. That's because, ever since the former prime minister established the Digital Transformation Office back in July 2015, the person in charge has changed more often than the incumbent of the Lodge - and that's saying something.
This would be a joke (albeit a bad one) if the digital world wasn't so critical to our future.
Unfortunately, the threats are existential and yet our response is analog. What moves this from farce to tragedy is that our government obviously still doesn't get just how important this is. The whole responsibility for our digital future is still being shuffled from one junior minister to another – but even that wouldn't matter if any of them actually grasped how vital it is and attempted to grapple intellectually with the radical nature of what's occurring.
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RACGP welcomes stronger My Health Record privacy protection for teenagers

Doug Hendrie 27/11/2018 3:38:04 PM
Increased privacy provisions for My Health Record passed by Federal Parliament last week are exactly what Australia’s GPs have been calling for.
RACGP President Dr Harry Nespolon said changes to the My Health Record legislation will enable teenage patients' confidentiality and safety.
The RACGP’s calls to improve privacy for teenagers aged 14–18 by removing default parental access to their child’s health records has now been made law.

RACGP President Dr Harry Nespolon told newsGP he is very pleased the Government included the stronger privacy measures for a potentially vulnerable patient demographic.

The RACGP had developed its position on teenagers’ privacy based on many requests from its members, Dr Nespolon said.

‘The RACGP’s recommendations to the Government regarding My Health Record privacy for teenagers were made with the knowledge that not all minors experience supportive functional home environments. The new legislation will protect vulnerable young individuals,’ he said.
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Australians can now opt out of My Health Record at any time

Legislation passed by the Australian Parliament on Wednesday will make it possible for citizens to opt out of the My Health Record digital health program at any time.
The Australian Digital Health Agency, which administers the scheme, said in a statement that records would be created after 31 January 2019 for every Australian who wanted one.
But these records could be permanently deleted at any time, it added.
The government had initially set a date of 15 November for Australians to indicate that they wanted to opt out of the scheme.

But following a big backlash and objections from the Opposition, the government agreed to make changes to the rules around the scheme.
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Parliament passes permanent My Health Record deletion provision

Access by insurers and employers explicitly prohibited
George Nott (CIO) 26 November, 2018 16:37
Parliament this morning passed legislation to allow citizens to opt out of My Health Record at any time, and permanently delete their records.
Previously, if an individual had not opted-out their record could not be later deleted but only made “unavailable”, meaning healthcare providers could not access it or upload documents to it. It would be, however, kept for 30 years after an individual’s death or, if the date of death was unknown, for 130 years after their date of birth.
The Australian Digital Health Agency (ADHA) – the system operator of the My Health Record – today said the new bill means individuals can now “permanently delete” their record “at any time”.
“No archived copy or back up will be kept and deleted information won’t be able to be recovered,” the agency said in a statement.
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New MHR legislation passes

The Australian Parliament has passed a second round of protections to strengthen privacy for My Health Record

On Monday the Australian Digital Health Agency announced that the Federal Parliament had passed further amendments to the My Health Records Act 2012 ‘without debate or division’, as part of the My Health Records Amendment (Strengthening Privacy) Bill 2018.
These amendments were announced by Health Minister Greg Hunt early this month. The changes will:
  • Allow Australians to permanently delete their records, and any backups, at any time. A My Health Record that was cancelled in the past (and archived) will also be permanently deleted.
  • Explicitly prohibit access to My Health Records by insurers and employers. Under these measures, insurers and employers are prohibited from accessing any information within your My Health Record or asking you to disclose your information.
  • Provide greater privacy for teenagers 14 years and over. Under these measures, once a teenager turns 14, parents will automatically be removed as authorised representatives.
  • Strengthen existing protections for people at risk of family and domestic violence. Under the changes, the Agency will no longer be obliged to notify people of certain decisions if doing so would put another person at risk. Additionally parents subject to a court order, where they do not have unsupervised access to their child, or who pose a risk to the life, health and safety of the child or another person will no longer be eligible to be an Authorised Representative. 
  • Increase penalties for misuse of information. Civil fines will increase to a maximum of $315,000, with criminal penalties including up to 5 years’ jail time.
  • Clarify that only the Agency, the Department of Health and the Chief Executive of Medicare (and no other government agency) can access the My Health Record system.
  • Explicitly require law enforcement and other agencies to produce a court order to access information in My Health Records.
  • Make clear that the system cannot be privatised or used for commercial purposes.
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Possibilities of the Humanitarian Robot

With technology playing a bigger part in our lives everyday, Lizzie O’Shea is combining her work with Digital Rights Watch, and as a humanitarian lawyer, to ensure the digital world is as ethical and and democratic as it can be. She is this week’s Changemaker.
Monday, 26th November 2018 at 8:52 am
Maggie Coggan, Journalist
The automation of machines, welfare, government programs and whole industries is moving at a pace the average person finds hard to comprehend.  
Everyday, people around the world give away their personal details when signing up to things that make their lives easier, trusting that this information and these programs will serve them in the way it says it will.
But how this information is being used is coming under scrutiny, as unethical and unfair practices used by tech companies target some of the most vulnerable in society.
O’Shea believes there is a way to use technology for good however, and is on a mission to expose and educate people about the humanitarian side of the digital world.
In this week’s Changemaker, O’Shea discusses the human influence on making technology, keeping people to account, and the democratic underpinnings of technology.   
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Getting ready for a cyber-security aware 2019

by Phil Kernick, Chief Technology Officer and Co-Founder, CQR Consulting
It’s been a big year in the cyber-security sector. Attacks on individuals and enterprises have become ever more frequent and the tactics employed by hackers and cyber-criminals ever more innovative.
Australian organisations paid out an estimated $3.8 billion in protection money in 2018, according to Gartner Group. That figure is likely to grow, not shrink, in 2019, as enterprises continue to invest significant sums to reduce the likelihood of their experiencing a disruptive and expensive attack or data breach.
So what will the new year have in store on the cyber-security front? These are the trends and topics we expect will make headlines over the next 12 months.
Ransomware on the wane
Infecting individuals’ or organisations’ systems with ransomware – malicious programs designed to block access until the hapless victim pays up – has been a profitable exercise for cyber-criminals in recent years. We’ll likely see less of it in 2019, courtesy of the fact that companies have wised up to the risk, improved their security posture and become increasingly reluctant to cough up. That doesn’t mean the perpetrators will hang up their hats any time soon. Cyber-criminals are nothing if not adaptable and it’s a guarantee they’re working on clever new ways to part the careless and poorly protected from their hard earned.
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  • Updated Nov 26 2018 at 12:00 AM

Government's 'mind-boggling' digital transformation policy steps out of a time warp

When Minister for Human Services and Digital Transformation Michael Keenan took to the stage at the National Press Club in Canberra on Wednesday lunch time, his bold speech title gave attendees and the watching masses on live television warning that he was about to do something special … "OUR BOLD VISION FOR AUSTRALIA'S DIGITAL FUTURE" it shouted.
The Minister then proceeded to launch what he called the government's Digital Transformation Strategy, a plan he said would have all government services available online by 2025.
No more lengthy queues for payments at Centrelink, a digital online identity that would enable citizens to transact across agencies without dozens of different passwords, and digital democracy platforms that would enable greater transparency and a greater ability for the government to reach out directly to Australians.
It was dazzling stuff, and presumably aimed at calming the anger of the millions of Australians unfortunate enough to have to deal with government agencies like the Department of Human Services in order to make ends meet.
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Comments welcome!
David.

21 comments:

Anonymous said...

Not directly related to health (yet) but this is a clear example of why Canberra should just stop.

Shadow Attorney-General Mark Dreyfus said the Coalition had made a number of concessions to improve oversight and accountability.

"It appears the Government will agree to proposals by Labor that will ensure there is better oversight and limitation of the powers in this bill, and better safeguards against potential unintended consequences," Mr Dreyfus said in a statement.

"Let me be clear — this bill is far from perfect and there are likely to be significant outstanding issues.

WTF this bill is far from perfect??? They either do not understand or do not care about the implications of this.

I recall the PCEHR was less than perfect, did we not rush through Telstra and the cancer registeries??

Andrew McIntyre said...

The sad part is that not only is MyHR pretty inadequate for any specific use case, it is also an Oxygen thief - What progress is being made on decision support, terminology, compliance and reliable interoperability while everyone debates the death throes of a highly flawed system.

Anonymous said...

Andrew a quick look at Tommies twitter account indicates we have been entertainly NHS persons regarding interoperability and getting a band back together whatever that means. So if peeps from the UK know one here has heard of are collaborating on ideas but people like you who many here have heard of are not being invited, what sort of image does that portray?

Anonymous said...

The pattern across the Jurisdictions such as the QLD eHealth considerable blowout, SA ePas ( or eFail) and growing issue in NSW such as Northern Beaches Hospital, where it is reporting records are having to be transferred via fax from Mona Vale and Manly Hospitals, staff are working through the night, sending faxes containing patients' history to the new facility because its computer systems are not fully operational (good job they did not burn the fax).

What this questions is the national strategy, these people running the state disasters are also responsible for shaping the national strategy and propping up the myehr, endorsing questionable benefits and a future where the myhr will enable Uber drivers and receptionists to perform emergency surgery through an app connected to a private health insurance gateway.

The only comforting relationship to the UK is caredata blew up in their faces for all the right reasons and the UK for a brief period seemed to move in a more promising direction.

Anonymous said...

But Queensland Health have implemented an additional committee to provide oversight. albeit under the careful direction and scrutiny of the same bungling, misleading fools the committee is supposed to be keeping an independent eye on.

Anonymous said...

Received an interesting request to review and validate (yes simply review and validate) from the ADHA. I will remain anonymous as I am not sure why it was sent to me. I have never signed in to collaborate with ADHA and I am sure no college or practice would have supplied my details.

Healthcare providers should make sure that information from the MHR that they have used in the course of decision making or providing health care is included in their own records and potentially in their local CIS. This could also include the origin of this information that has been documented outside of the MHR.

The hard delete option now provided is an extension of the fact that information in the MHR can be amended at any time by the patient removing a document or a healthcare provider amending a document.

As such the system now has similar properties to the hard delete option and healthcare providers cannot be certain that specific information already viewed or used to form a clinical opinion will be available to use in a later consultation.

Bernard Robertson-Dunn said...

AFAIK, in any active myhr, any document deleted or hidden by a patient or the author is never fully deleted but retained by the Systems Operator, who is the only one able to see it. Why this is so has never been explained.

I don't know what the situation is re a document that has been downloaded by a healthcare provider and used for decision making, if it has been deleted because it is incorrect.

Is anyone liable or accountable when incorrect data is used in providing health care?

It would seem that myhr is unreliable and that a health care service provider should always check the validity of the data, preferably with the patient.

At one time this advice was on the government's website, but since the redevelopment, it's disappeared.

Dr Ian Colclough said...

@9:18 AM are you serious? "Healthcare providers should make sure that information from the MHR that they have used in the course of decision making or providing health care is included in their own records and potentially in their local CIS. This could also include the origin of this information that has been documented outside of the MHR.".

Have you quoted the above verbatim from an ADHA document or are they simply your words?

Either way that can best be described as a right bugger's muddle.

It is inconceivable to me that any competent self-respecting clinician would contemplate inserting such information in the practice's clinical record; we work very hard on ensuring that whatever is filed in our patients'clinical records is accurate so that it can be referred to in the future with confidence.

Dr David G More MB PhD said...

Ian and All,

As I see it there is a huge problem that all clinicians need to be aware of and that is that the reason you made a clinical decision may suddenly vanish from the myHR if the record owner decides to delete it.

The fix is to make sure that anything you use from the myHR is also on your own system(s) or years later a medico-legal issue just might arise and the basis of your decision making could be challenged.

It's simple, anything you rely on needs to be in your system(s) not some possibly transient Government system.

David.


Anonymous said...

@10:24. Not my own words. Was sent this in an ADHA document presumably to review.

Anonymous said...

@10:24 AM and 1:55 PM, You both make good points.

The problem for me is I don't want MHR documents cluttering up our easy to use Patient Health Record system which we rely upon. Perhaps the compromise position is one where, if or when we access some information off the MHR that information should get filed in a separate section of our practice computer so that if any 'questions' are subsequently asked we can delve into the 'MHR Compartment'.

Bernard Robertson-Dunn said...

What do you do if you have made a decision based on a myhr document (which you have downloaded) and it is updated or the information in it is superseded by another and your decision is now inappropriate or even dangerous?

How will you know?

What responsibility do you have to ensure that old decisions are still valid?

What guidance does ADHA offer?

Anonymous said...

Not sure I would use “good points” probably “highlighting dangerous flaws”

So if I am reading this correctly. In events where a healthcare provider relies on information sourced from a patient’s MyeHR to make a clinical decision, diagnosis or recommendation to the patient, that information should be recorded, in a medico-legal context probably as onerously as being contemporaneously downloaded or printed from the MyeHR and included into their own records or CIS, as a record of the information used to derive the clinical diagnosis and treatment decision at that time.

As I understand hard delete means there will be no audit logs kept within the MyeHR for those having wisely decided to support a better health system and requested that their MyeHR is deleted.

The ADHA would appear to be a little short on smarts. Perhaps even a clinical risk

Anonymous said...

The whole thing has just become a dog's breakfast now and they are trying to fix it from the wrong end. Initially, the whole concept of the PCEHR was the documents within it would not be deleted but locked. And changes would come from new versions uploaded from originating systems which were seen as the 'source of truth'. Locked documents were only to be accessed for legal reasons. Who knows what the story is in regards to legalities now but audit logs of everything including deletion have to be maintained for National Archives purposes.

Anonymous said...

The governments HR system is outside the Archives Act so not required to archive. That does raise a whole other bag of issues though. I agree with everything else you say. It is clear there are two dangerous camps at play. One is not equipped to understand the implications of their narrative and the change implications they continually make on the fly. The other just blindly seems to change system functionality blindly without question.

My guess is the hard delete will be a modification of the current make private function, with little thought into the implication of change the conditions of the overall model.

It is not either camps fault as such, that is they way the ADHA and the APS in general works, command and obey, good little termites slowly rise in the ranks by following and not making any ripples. Eventually the get into the other camp and the cycle is reborn. The introduction of clowns like Tim Kelsey is the system is not setup to identify and stop his sort of craziness. Hence we now have far reaching negative implications of his blazed disregard for people privacy and trust has broken down.

Anonymous said...

A dogs breakfast sums it up nicely. The ADHA will soon be synonymous with Australian Digital Healthrecords Auction-house

Bernard Robertson-Dunn said...

I doubt that anyone at ADHA understands the mess they are in. Calling it a dog's breakfast is a compliment - at least a dog would appreciate it.

(Part 1 of 2)

Picking just a few rather fundamental aspects of what's happened might give you some idea of the mess.

The original intent of the PCEHR was to reduce the fragmentation of health data. Existing health data that was to be included in the PCEHR system was in conformant repositories. These were to have standard interfaces and be accessed by solving the interoperability problem – which as we all know, hasn’t happened.

Other data was to be held in a national repository service. These other data were specific documents, Shared Health Summaries, Discharge Summaries etc, that were uploaded and held in one or more central databases.

Access control and auditing was to be achieved through a two factor authentication scheme delivered by the National Authentic Service for Health (NASH) and was to identify individual users. This was never properly implemented, hence only institutions can be identified through the system. It is possible to find out which individual may have accessed a particular record but only by the System Operator asking the institution.

Because of a failure to solve the interoperability problem, AFAIK, there are no conformant repositories, there are only central databases.

This has had a number of consequences.

The first is that there is no way to get at a patient’s existing health data. Bang goes the objective of reducing fragmentation. It also limits the amount of data in the system and explains why, immediately after being registered for a My Health Record, it is empty.

(continued in part 2)

Bernard Robertson-Dunn said...

(part 2 of 2)

The second is the little matter of MBS/PBS data. This is held by DHS in what is or could be a conformant repository. There are some very strict laws that govern who can store and link these data. As part of the National Health Act 1953, the Privacy Commissioner created in 2008 a set of Privacy Guidelines that are binding on all government agencies.

https://www.legislation.gov.au/Details/F2008L00706

One of the guidelines, 7.2, applies to the Department of Health and says:

"The Secretary of the Department, or delegate, must not permit the establishment of a system which stores claims information from both the Medicare Benefits Program and Pharmaceutical Benefits Program in a combined form."

It might be arguable that the PCEHR, as a Department of Health system, was not legal, although the fact that the PCEHR didn’t store MBS/PBS data might have been a loophole. In addition the PCEHR had the explicit consent of patients to acquire and store their health data.

The big problem was moving to opt-out.

It is not clear if the DHS MBS/PBS system was ever a conformant repository or if data was extracted and stored in a National Repository.

Anyway, how has the Department of Health got round the Privacy Guidelines? It is important to know that the Privacy Commissioner spent two years consulting with a wide range of stakeholders before issuing his guidelines – which have just been reviewed and confirmed in new legislation that comes into force on 1 April 2019.

When the various laws were amended in 2015/16 to enable a move to opt-out, a new clause was inserted in the National Health Act 1953.

That clause is in section 135AA Privacy rules and is:

"(5AA) Nothing in this section, or in the rules issued by the Information Commissioner, prevents the My Health Record System Operator including information to which this section applies in the My Health Record of a healthcare recipient."

At no stage in the various Explanatory Statements that cover the National Health Act 1953, The My Health Records Act, The Information Commissioner’s submission to the Department of Health regarding the change to opt-out has the fact that the government has sidestepped the law that previously stated that the Department of Health was not to store and/or link MBS/PBS data.

To summarise just these few aspects of the My Health Record that ADHA and most observers are probably not aware of:

1. The My Health Record does not and cannot, in its present form, achieve its stated objective of reducing health data fragmentation.

2. The Commonwealth government has gradually eroded the privacy protections of My Health Record.

3. The aspects of the system that may have delivered some benefits (i.e. linking existing health data) do not exist.

4. The only data in My Health Record that may have some benefit (and those benefits have never been justified or valued) come from the Shared Health Summary which is a major data entry imposition on GPs.

The My Health Record has failed to deliver on its objectives. The steps it is taking to increase uptake are making things worse, especially in terms of privacy. Digital Health is more than dumb record keeping, the true battle ground of health care transformation is a million miles away from the vision of the ADHA. The government would be wise to dump My Health Record and any attempt to directly participate in health care service delivery and learn from its very sorry mistakes.

Anonymous said...

Love the propaganda tags! Surely HIMSS, of all organisations, should butt out of Australian affairs - of which it has little knowledge - and enrich itself in other patches.

Anonymous said...

Another challenge will be that it (theirHR) is not a front and centre tool. It is not a knowledge tool. The marketing and product placement of this thing is really a classic nice and dim idea.

Anonymous said...


The guessed at benefits of the GOVHR for a consumer claimed by ADHA is that for the first time clinically relevant information is available to all health care providers that they interact with (which is a stretch of a claim). What is not mentioned but can be derived from ADHA's false advertising claims are the risks associated with the removal of information from the GOVHR or limiting access to certain health care providers (noting can only be achieved at an org level in most cases. This is because information that could be of benefit to a health care provider when making a clinical decision is no longer available and as such cannot form part of the decision. (which begs the questions of relevance, currency and integrity).
Once data in removed or permanently deleted audit logs will be removed a consumer will no longer have that information. This will restrict consumers should they wish to use it as part of a medico-legal claim I state this as I believe the ADHA will start to use fear and doubt going forward as a tool to further pressgang people into the system. The same as is being used in the encryption disaster.

Consumers who have previously cancelled their records will automatically have their record permanently deleted. So the ADHA believe but I am sure with numerous caveats, and as we learn the MBS PBS database is the backdoor anyway.


So the risk for healthcare providers will be in part around the fact audit logs will no longer be available within the GOVHR for those consumers who have chosen to permanently delete their record therefore the ADHA will force the onus is on the health care provider to ensure that interactions with the GOVHR are noted. There will be statements such as local policies around how health care provider interact with the GOVHR already existing and should be continued to be used. Interactions with the GOVHR should be logged externally to the GOVHR system. So duplication, fragmentation and inability to trust data presented continues to grow, administrative overheads increase. This will result in consumers and providers further reduced to data points and dehumanised and less time spent caring (Dr Moy)

Oh and if the do turn it off those how state it is the second coming will herald a new era and that they somehow influenced that change. Sickening to watch, sickening knowing my hard earned tax dollars are funding this crap.