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 27, 2018

Commentators and Journalists Weigh In On The MyHR Debate And Related Matters. Lots Of Interesting Perspectives - Week 19.

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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Digital health round-up: Australia’s health records nightmare continues, and more

Australia continues to show the world how not to implement an electronic health records system, after health minister Greg Hunt has extended the deadline for opting out of the country’s controversial My Health Record system.
The scheme has faced criticism because of concerns over patients’ privacy, and they originally had until last week to opt out of the scheme.
But following public pressure and a motion in the senate, Hunt decided to extend the deadline to January 31.
According to ABC News, Hunt said: “The opt-out period will be extended until January 31, 2019, however, it’s important to note that people can opt-out at any time.”
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Courage

Posted on by Grahame Grieve
Yesterday, I spoke at the Wild Health Summit, along with John Halamka, Eyal Oren from Google, and other Australian Health IT leaders.
During my talk, and in regard to how to move forward in regard to Interoperability, healthcare it, the MyHR, and the continued use of faxing in Australian healthcare, I spoke about the need for us to have courage. Today, as a follow up, someone asked me:
“What kind of things should we do to have courage?”
Here’s my top 3 ways that we should act with courage in Australia.
1. Have the courage to speak the truth, and say unpopular things.
Note that this not excuse for being rude, or causing trouble. Nor is it ok to ‘speak the truth’ without first investing time to make sure it’s the truth.  But if it really is the truth, we should say so, even if it’s unpopuler. And there’s a strong view right now in Australia that people need to toe the party line. In regards to healthcare IT, that’s hurting us right now.
An obvious corollary to that is not to punish people for speaking the truth – even if you don’t agree it’s the truth. If they’ve made a good faith effort to find it, then open discussion can follow
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MyHR: CDA or PDF?

Posted on by Grahame Grieve
Quoting from the story Sue Dunlevy wrote about John Halamka after his visit to Australia for Wild Health this week (paywalled):
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
Technically, the MyHR is a document repository where the repository uses a modified variant of XDS (for the ‘personally controlled’ bit) and the documents are all CDA documents. A small number of the CDA documents are simply wrappers around PDF documents (<5 amounts="" are="" but="" cda="" coded="" comprehensive="" data="" documents="" embedded="" full="" in="" indeed="" of="" p="" quite="" rest="" some="" the="" them="" variable="" with="">
In spite of the fact that it’s a repository of CDA documents, most of the commentary in the media describes them as PDF documents, and John’s comments reflect that – based on what people told him while he was here. 
So if the repository is full of CDA documents, why all the commentary about PDF? Actually, the answer is pretty simple: 
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What is My Health Record?

My Health Record is an online health record system which will be generated for all Australians unless you say you do not want one.
It contains personal health information that can be accessed by the individual, their representatives and their health providers and their representatives. In certain circumstances there is scope for other people and agencies to access records. Individuals can set controls that limit, but cannot fully control, who has access to their online health information.
You will automatically have a My Health Record created for you by the government unless you opt out before 31st January 2019. After that time, you can close your Record but information will not be deleted.
My Health Record involves personal benefits and risks. By understanding the benefits and risks, you can make an informed choice about whether you want to opt out.
Consumers of Mental Health WA

CoMHWA is concerned that My Health Record does not provide enough protections for mental health consumers. 

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My Health Record a vital tool for pharmacists

22 November 2018 ADHA Propaganda
As National President of the Pharmaceutical Society of Australia, Shane Jackson often finds himself on the road. It’s his job to travel the country, meeting with local pharmacists to better understand the challenges they face in their practice.
The overwhelming response? Pharmacy is too often like putting together a jigsaw puzzle with crucial pieces missing.
“When a patient comes into a pharmacy, often the only information I’ll have is their medication history,” Shane says. “I might be able to interpret and have a chat with them about the conditions they have, but lots of different medications can be used for many conditions.”
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23 November 2018

Global health leader says pivot MHR now

Posted by Jeremy Knibbs
One of the most respected and experienced digital health experts in the world last week called on the Australian Digital Health Agency (ADHA) to stop the current trajectory of the My Health Record (MHR) project immediately and refocus and prioritise  investment where it will have real and near-term benefit for the Australian health system.
Professor John Halamka, is Chief Information Officer of Beth Israel Deaconess Medical Center in Boston, US, Chief Information Officer at Harvard Medical School and Chairman of the US Healthcare Information Technology Standards Panel (HITSP).
He has worked closely with both the Bush and Obama healthcare administrations to introduce and adapt the revolutionary and at times controversial “meaningful uses” legislation in that country.
Recently he has been contracted by the Gates Foundation to advise on digital connectivity in the effort to bring HIV under control in Africa, the Norwegian government in their efforts to swing their economy to be focused on healthcare innovation, and the Chinese government, in an ambitious project to digitise the medical data of the Chinese population and create the most powerful medical AI database in the world.
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Call for providers to get behind My Health Record

By Sandy Cheu on November 23, 2018 in Government, Industry
Aged care organisations need to advocate for provider access to upload documents to residents’ My Health Records, a rural provider has told the sector’s national technology conference.
For 30-bed residential aged care provider Amaroo Aged Care in Berrigan in southern New South Wales, all residents having a My Health Record has helped address some of the challenges of providing care in a rural country town.
Earlier this year, Berrigan became the first town in Australia with all key healthcare providers connected to the national e-health system and using the My Health Record (read more here).
At the ITAC 2018 conference in Adelaide on Wednesday, Amaroo Aged Care general manager Andrea O’Neill called on the aged care industry to work together to get providers access to upload resident hospital transfer documents and care plans to the e-health system.
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Digital manifesto: ‘trust deficit’ must be overcome to realise ‘Vision 2025’

By Stephen Easton • 22/11/2018
“It is an enormous journey — one that will ultimately impact every government department, and every Australian.”
So says the federal government’s new Digital Transformation Strategy, which sets an ambitious goal of making all its public services available online by 2025 with as little need for phone lines and shopfronts as possible.
“You will have access to alternatives if you are unable to access services in a digital way,” promises the new policy brochure, launched yesterday at the National Press Club by the Minister for Human Services and Digital Transformation, Michael Keenan.
The minister hopes the vast majority of everyone else, however, will see the benefits of “seamlessly integrated” services, organised around their “needs and life events” so they don’t have to deal with as many government bodies separately, and flock to
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Aligning care with patient expectations

20 November 2018 ADHA Propaganda
We live in a digital world, where people carry supercomputers in their pockets and can buy things at the touch of a button. They rightly assume their healthcare is just as connected. But it isn’t.
“If you go to two different doctors, they can’t both see your results,” says Dr Caroline Yates. “If you’re travelling and run out of medicine, your doctor can’t see what you’re taking. Patients should be able to assume that health information is available when they need it, where they need it.”
Caroline has seen it all. She’s been a GP for more than 20 years, first in the UK where she grew up and then in Australia. She’s worked across the spectrum of general practice across Australia, including some of our most remote communities.
But no matter where she’s been, Caroline has seen the same issue of access to important health information crop up.
Note how most of the benefits are future tense….
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Beware of Big Brother in the digital age

Miranda Devine
November 17, 2018 9:00pm
A good reason not to trust the government with our private information is the revelation from the telecommunications industry that local councils, Australia Post, fisheries agencies, workplace safety authorities and Centrelink are accessing our phone records to chase up fines and infringements.
When then-attorney general George Brandis brought in the “data retention” powers in 2015, authorising warrant-free access to our metadata, it was meant to apply only to “criminal law-enforcement agencies” and was sold as an urgent measure to fight terrorism, cyber criminals and pedophiles.
Yet now it’s being used to enforce parking fines and littering. Hello, Big Brother.
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All government services to be available online by 2025, minister says

Government launches first digital transformation strategy
Rohan Pearce (Computerworld) 21 November, 2018 14:43
All government services will be available through online channels by 2025 under a digital transformation strategy unveiled today.
The strategy, developed by the Digital Transformation Agency (DTA), sets four overarching goals to be achieved over the next seven years. The document says that in addition to enabling all services to be accessed digitally, the government will ensure that services are seamless and integrated and support an individual’s changing needs, with delivery to be underpinned by a secure and easy to use digital identity, and the government continuing to provide alternative, offline channels.
Human services and digital transformation minister Michael Keenan today launched the document, dubbed ‘Vision 2025’, which contains a roadmap of more than 70 initiatives, including 55 earmarked for FY18-19.
“Digital transformation is happening across the private sector, and increasingly across governments,” the minister said in remarks prepared for a National Press Club address.
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Govt pledge to put all services online by 2025

The Federal Government has said it would make all services with which citizens have to interact accessible online by 2025, according to a Digital Transformation Strategy released by Human Services and Digital Transformation Minister Michael Keenan on Wednesday.
In the process, the government claimed it would make the country one of the top three digital governments globally.
Keenan said providing data to the government — such as information about births or deaths — which has to be done multiple times at present, would be a thing of the past.
“Imagine never having to queue up in a government office again because every sort of transaction you can think of will be available online – whether it is applying for welfare payments, registering a birth or a death, or even setting up your business end to end,” he said.
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Government services to go digital by 2025

  • 5:29PM November 21, 2018
The federal government is looking to make all government services digital by 2025, with digital transformation minister Michael Keenan saying that the road map in place should make Australia one of the top three digital governments by 2025.
Releasing the strategy in Canberra on Wednesday, Mr Keenan stressed that the government was taking the issues of security, privacy and accessibility seriously, adding that it was important to allay the understandable anxiety of the public.
“Australians expect the same experience interacting with government as they have with innovative, leading private sector organisations,” he said.
 “They expect us to meet the highest standards of service delivery, customer experience, simplicity, flexibility and ease of use.”
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Westpac’s Dave Curran warns of “trust gap” hovering over digital identity, open banking

By Julian Bajkowski on Nov 21, 2018 12:22PM

Public confidence in institutions lacking.

Westpac technology chief Dave Curran has delivered a reality check to policymakers and the technology sector, cautioning crucial reforms including open banking and digital identity must be better explained and understood by the public if they are to be successful.
As the clock ticks down to Australia’s banks being required to share consumer consumers’ financial data, Curran is worried that a deficit in public confidence that institutions will do the right thing will impede much needed progress to modernise and better secure the financial system.
“If you are going to move to a more open data-connected world, which we clearly are – open banking being the start, but we're going to see it across, and technology's going to create that – you have to solve the problem of digital identity,” Curran told iTnews at a recent Trans Tasman Business Circle speech.
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My Health unnecessary

Sean Parnell explains lucidly why the My Health Record project falls into the seemed-a-good-idea-at-the-time category (“My Health in the balance”, 19/11). It’s bureaucratic overkill, but worse — it’s really unnecessary.
The information to be amassed in My Health Record is readily available now. Over the past five months I’ve had two surgical procedures, a serious infection and deep-vein thrombosis, requiring admission to three hospitals. Surgeons, specialists and hospital registrars instantly downloaded my blood studies from pathology laboratories, and got medical histories from my GP, and specialists. But they depended more on tests, scans and readings they took on the spot. Historical data is valuable only if it’s up to date; the main defect of the project is that what it collects is only history.
In an emergency, its relevance is limited; elsewhere, the information is a phone call away.
Geoffrey Luck, Killara, NSW
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Health Care Homes: Govt tweaks unpopular policy

Patients will no longer need a My Health Record to get in to the program
20th November 2018
Health Care Homes patients will no longer be forced to sign up for a My Health Record, with the government admitting the unpopularity of its beleaguered online system is putting patients off enrolling in its other signature policy bungle.
When the Department of Health officially launched the $140 million Health Care Homes program last year, one of its key requirements was that all participants must sign up for a My Health Record within one month of enrolling.
Practices were also obliged to continually update participants’ records so the patients, who each had a minimum of two chronic health problems, could easily share their information with other practitioners.
The requirement would have been attractive to health officials because it ensured the key health policies of two successive governments — Health Care Homes and My Health Record — were working in lockstep.
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'We have to admit when the free market is not working': Apple chief's privacy call

By Brian Fung
20 November 2018 — 9:50am
Apple chief executive Tim Cook argued in an interview with Axios that aired on HBO Sunday that the tech industry's approach to privacy reflects a failure of the free market, and that government regulation is "inevitable" in the face of missteps by platforms such as Google and Facebook.
Cook said that he was no fan of regulation, and that he prefers markets to operate unimpeded. But Silicon Valley needs to get with the program, he said.
"We have to admit when the free market is not working," Cook said, "and it hasn't worked here. I think it's inevitable that there will be some level of regulation. I think Congress and the administration at some point will pass something."
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Health data hacks a matter of when, not if

16 November 2018
Jerome Doraisamy 
A health insurance lawyer has warned that medical providers must take precautions in anticipation of the My Health Record opt-out deadline, as the medical sector is “vulnerable” to data cyber attacks.
Barry.Nilsson partner Robert Samut said that under current data protection laws in Australia, the burden falls on medical providers to take all “appropriate measures” to protect a patient’s health data.
“A cyber criminal is able to sell personal health information for far more on the black market or the dark web than a credit card,” he said.
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Very public health

17 November 2018
9:00 AM
I’ve known health minister Greg Hunt for over twenty years. When he is convinced about something he doesn’t hold back and jumps in, boots and all. It’s no surprise Hunt passionately defends the government’s personal healthcare data-sharing programme, My Health Record, becoming an opt-out scheme, with opting out only through a cumbersome, inconvenient and intrusive online process. This time he’s wrong.
Hunt inherited the opt-out legislation, but personally put it into effect after few people opted in since the costly scheme started in 2012. Even so, since July over a million Australians having defied the government and opted out through a process deliberately made cumbersome and intrusive, and a Senate inquiry raised further questions about My Health Record’s operation. In response, the minister this month announced new legislation better to protect the most intimate personal data we have – what we see the doctor about, our diagnoses and our treatments.
Even newborns are caught up. If you happened to have a baby on 15 November, the day the government’s opt-out amnesty period was due to end, the bub will be presumed to be getting a My Health Record even if you’ve already opted out; the authorities don’t encourage you to find out how you can opt the baby out too. Hunt’s proposed legislation doesn’t give one comfort for two big reasons: compulsory sharing of personal data is itself a fundamental invasion of privacy; and who can access My Health Record, and the conditions under which they do, still favour Big Brother’s interests over yours.
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My Health Record opt-out  Extended

19 Nov 2018
The My Health Record opt-out period has been extended until January 31, 2019.
The Government had to backdown and delay the cut-off date for people wanting to delete their digital health records in the new system.
The Senate forced the Government into its embarrassing position by voting in mid-November – just before the opt-out was supposed to end – to extend the period.
Despite this, Health Minister Greg Hunt described the vote as win for the Government because Labor had tried to extend the opt-out period by 12 months.
“Labor’s plan to delay and derail the rollout of the My Health Record was blocked today,” Mr Hunt said after the Senate vote.
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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 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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  • Updated Nov 19 2018 at 11:00 AM

My Health Record problems give government a bitter, but needed privacy pill

by Brian Fletcher
My Health Record has managed to become one of the most talked about bills of 2018, with the Australian Government facing intense scrutiny for a scheme seen by many as a rushed policy that has failed to consider the privacy of the millions of Australians it was built to service.
Intensified by the wave of key amendments announced in recent weeks – namely, stricter access policies and higher penalties for data misuse – the public debate surrounding My Health Record has been passionate.
Symbolic was the slowdown of the scheme's website and help line as Australians attempted to opt out the day prior to what was, until last Wednesday, a November 15 deadline.
But, away from the senate inquiries and political footballing, many of us in the cyber security space have seen the privacy dialogue spurred by My Health Record as a welcome one.
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My health in the balance

Concerns remain over the digital record scheme’s security, growing cost and efficacy.
November 18, 2018
If the decision last week to extend the opt-out period for the My Health Record scheme was intended to bring more certainty to the process and resolve lingering concerns over privacy and security then it still has some way to go.
Electronic health records so far have cost taxpayers close to $2 billion through changes of government, changes of minister and changes of design, and with ­implementation now drifting into another year. Australians have been given until January 31 to ­decide whether to opt out of a My Health Record or have one created for them. The success of the scheme depends very much on public and health sector confidence in its potential benefits — and at the moment you could be forgiven for thinking that confidence is well and truly shot.
The best-case scenario, depending on who you believe and what happens in the coming months, is that more than 20 million Australians will have a My Health Record with a shared health summary, copies of clinical records, scans and medication history, updated and available to their treating doctor if and when required. Across time this will improve care, avoid errors, save money and give ­patients an unprecedented level of control over information kept under their name (provided they know how to exercise that control).
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November 18 2018 - 3:00PM

My Health Record continues to attract controversy

·         Chris Bath
The controversial My Health Record scheme has been forced to extend the opt out deadline for a third time, naming January 31 as the new date to make a decision by.
The proposed national database has polarised the nation, with well over a million Australians already opting out before October, while the phone and website went into meltdown on Thursday as thousands more rushed to opt out at the last minute.
The system has come under plenty of fire from both individuals and organisations who have questioned the security around such information, and its ability to be bought, sold and hacked.
Local GP Casey Sullivan can understand people’s concerns, although believes the system can be very effective if the government can “get it right.”
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Benefits from big data at risk from untrustworthy, bungling politicians

By Ross Gittins
18 November 2018 — 2:00pm
The digital revolution holds the potential to use mere “data” to improve the budget and the economy, and hence our businesses and our lives. But you have to wonder whether our politicians are up to the challenge.
In a speech last week, the Australian Statistician, boss of the Australian Bureau of Statistics, David Kalisch, said the new statistical frontier is “data integration” – you take two or more separate sets of statistics and put them together in ways that reveal new information. Things you didn’t know about how bits of the world work.
This is just exploring the huge, still largely untapped potential of computers to manipulate a lot of figures and produce useful information about what’s going on in this field or that. But it also involves new statistical techniques for combining data in ways that make sense and don’t mislead.
(This, BTW, raises a bugbear of mine. Digitisation, which allows us to measure any number of aspects of a company’s performance cheaply and easily, has given rise to the enthusiasm for “metrics”. But bosses who allow their metrics to be chosen and presented by people who know a lot about IT but nothing about the science of statistics, or who draw conclusions from those metrics without any knowledge of stats, are asking to be led up the garden path. They never know when the metric is answering a different question to what they imagine.)
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Comments welcome!
David.

2 comments:

Anonymous said...

I think the first headline sums the issue pretty well.

Australia continues to show the world how not to implement an electronic health records system, after health minister Greg Hunt has extended the deadline for opting out of the country’s controversial My Health Record system.

However, Tim, Roman and Bettina still remain in their positions, making new problems every day.

Anonymous said...

And in terms of being able to 'implement' anything widely useable as an IT system, we haven't come close with MyHR in 8 years since it was dreamt up, 6 years since it went 'live' but now ALL government services will be online within 7 years apparently! Via MyGov one assumes? Pink pigs might fly.

As for the CDA/PDF business - well, the standards that were supposed to be agreed to and put in place for interoperability just never did get off the ground for a whole lot of reasons.