Friday, July 20, 2018

The ADHA Creates A Fanfare But Then Reveals It Is All Still A Work In Progress.

This appeared last week:

Media Release: My Health Record increases pathology and diagnostic imaging connections with Victorian and Queensland services

11 July 2018
Pathology and diagnostic imaging services such as blood tests, x-rays, ultrasounds, and MRIs help healthcare providers make diagnoses and monitor their patients’ progress. An increasing number of healthcare providers and their patients are now benefiting from convenient, safe, and secure access to these reports via My Health Record where they may not have access to these reports before.
Today, the Australian Digital Health Agency announced new My Health Record system connections by Victorian Cytology Service (VCS) Pathology, and Queensland based Mater Pathology, Mater Medical Imaging, and Paradise Ultrasound.
VCS Pathology Executive Director Professor Marion Saville said the company has over 50 years of experience serving Australia’s population, providing large-scale services and solutions supporting public health programs. 
“VCS has built and now operates national register platforms and services in Australia and abroad to support major screening and immunisation programs, as well as operating a large pathology laboratory. The company understands the importance of providing secure and reliable access to quality information via an electronic health record. 
“I am proud of the VCS Digital Team who were able to successfully complete the project to connect to the My Health Record ahead of schedule, with VCS Pathology being the first Victorian laboratory to achieve this outcome,” Professor Saville said.
More than 5.9 million Australians have a My Health Record, which contains a summary of key health information such as shared health summaries, discharge summaries, prescription and dispense records. My Health Record allows Australians to share secure health information including test results with authorised health care providers at the point of care.
Australasian College for Emergency Medicine (ACEM) President Dr Simon Judkins said providing quality care in a modern health system relies on accessible and accurate clinical and patient information.
“My Health Record offers the potential to improve the interaction of patients and physicians, the quality of patient care, as well as improving efficiency of health care delivery,” Mr Judkins said.
Agency CEO Tim Kelsey said that all pathology labs and diagnostic imaging practices in Australia are being encouraged to connect to My Health Record because these services support improved health benefits and provide increased clinical usefulness within the system.
“More than 100 pathology labs and 80 diagnostic imaging practices are now connected to My Health Record, and there are over 1.6 million pathology and 151,000 diagnostic imaging reports already uploaded to the system.
“These uploaded reports are helping Australians by improving access to their health information and to reduce unnecessary tests and scans,” Mr Kelsey said.
People with a My Health Record can access their latest pathology and diagnostic imaging reports one week after they are added to the system. This timing gives their healthcare provider time to check the report and contact them about the results if needed.
For people who do not want a report added to their My Health Record, providers can tick the ‘do not send to My Health Record’ box on the request form. People can also instruct their doctor or the pathology or diagnostic imaging service not to upload the report.
In addition, individuals can set document access controls within their My Health Record, and remove pathology and diagnostic imaging reports from their record at any time.
In some circumstances certain pathology reports may not appear in an individual’s My Health Record, even if they have not withdrawn consent for upload, in accordance with legislation. For example, reports may not be uploaded on a person’s AIDS or HIV status if there are disclosure restrictions set by state or territory legislation.
Further information
The full list of health care organisations connected to the My Health Record system is available on this web page.
ENDS
Media contact
Agency Media Team
Mobile: 0428 772 421
Email: media@digitalhealth.gov.au   
If you follow the link at the bottom of the release you discover that actually recording preferences for uploading results, or not, is still a work in progress – especially as far as electronic test ordering is concerned.
You also see the ADHA has realized there are some sensitive test results that may need to be handled more sensitively – AIDS testing is mentioned. I wonder about other STI’s?
I still believe there needs to be a call centre to answer questions from patients who see results and are worried….and can’t contact their doctor.
The uploading of results may yet turn out to be a bad idea. Having such results in a secondary shared record confuses the purpose of the myHR. Is it meant to be a complete record – won’t ever be – or an emergency record – in which case test results are rarely needed ahead of medications and allergies etc.
Time will tell I guess.
David.

28 comments:

Bernard Robertson-Dunn said...

This is an expansion of their usual lie that there are 5.9 million users

"More than 5.9 million Australians have a My Health Record, which contains a summary of key health information such as shared health summaries, discharge summaries, prescription and dispense records."

Only 1.9 million SHS have ever been uploaded. ADHA told News.com.au that there are 1.2 million records with a SHS.

That means about 80% of records are useless - a SHS is the basis of "key health information"

And they are still measuring myhr in terms of uploads, not healthcare use.

Anonymous said...

And if a patient is treated using the MyHR and the data is not complete and something goes wrong, who is liable?

Anonymous said...

http://mobile.abc.net.au/news/2018-07-20/health-department-investigating-instgram-influencer-campaign/10016712

Might be time for government to clear out all these new age communicationschange and wannabe disrupters. The public purse is being made a mockery of.

Anonymous said...

Breaking news - Singapore Personal data hack hits 1.5 Million health authority reports

They broke into the government health database in a "deliberate, targeted and well-planned" attack, a government statement says.
Those targeted visited clinics between 1 May 2015 and 4 July of this year.
Data taken include names and addresses but not medical records, other than medicines dispensed in some cases.
"Information on the outpatient dispensed medicines of about 160,000 of these patients" was taken, the statement says.
"The records were not tampered with, i.e. no records were amended or deleted. No other patient records, such as diagnosis, test results or doctors' notes, were breached. We have not found evidence of a similar breach in the other public healthcare IT systems."


Now Mr Turnbull and co, just what is an election win worth?

Anonymous said...

Good thing everyone is just being paranoid, denial is the best defence

Anonymous said...

The ADHA and all those champions of MHR will be hard pressed to address this one. Saying we are not the same would be a mistake

Bernard Robertson-Dunn said...

For those late to the party, Accenture, Oracle and Orion built Singapore's eHealth system. They also built the PCEHR, which was the original name of myhr

It was opt-in in those days

https://www.theaustralian.com.au/business/technology/accenture-oracle-bags-major-pcehr-deal/news-story/6d2a0b2eb48376561db145c5a2d0d158

There may or may not be anything in common between the hacked Singapore system and myhr, but it doesn't look good, not to those who only see health data being hacked.

And then there's this

Patients' concerns over hacking incident at Ochre Health Wollongong

https://www.illawarramercury.com.au/story/5538104/fears-after-health-records-hacked-at-wollongong-medical-centre/

Oh, dear, so soon after Health Engine.

Anonymous said...

And for those who think concerns are just scaremongering and isolated to tin foil hat wearers - https://www.smh.com.au/technology/errors-and-incompetence-australians-split-over-government-s-opt-out-digital-health-records-20180720-p4zsnc.html

I put to those who are advocating this health record ATM, are your opinions grounded in the fact you are being held to ransom? If you don’t spout the opinion you are being given money will flow elsewhere. When you live on a diet based on the scraps from the table you tend to obey your lord and master.

Trevor3130 said...

Anyone care to risk a small wager that Norman Swan's 'The Health Report' will not make as much as a passing reference to the Singapore data theft?

tygrus said...

You can't rely on the summary reports from the radiologists and sonographers. About 30% in this household, and probably 15% overall, contain errors (from minor to major). The specialist's always review and make their own notes which are not sent back to the health professionals conducting these tests (and writing these reports). The MyHR is probably not built to store all of the images in the full series of MRI/CT slices so they would rely on the summary report (text).

Anonymous said...

Tygrus not even with the most prolific gambling habit would that seem a worthy bet. It will be the same for ADHA, cabinet ministers, they will ignore this, the ADHA will treat it as nice but dim and The Librals will either blame the Nationals or Labour.

The silence will be deafening

Anonymous said...

Tygrus...
Are you suggesting My Health Record is not fit for purpose?

OMG, if only the gov't had known about this earlier, they may not have been so stupid to try and make a broken system opt-out and be accused of running a useless and dangerous system.

Shakes head sadly and wanders back to twitter, where ADHA/Gov't/Dr Swan are being torn to pieces.

Trevor3130 said...

Mark Fitzgibbon is on the MyHR bandwagon.
Does that mean NIB members will get a discounted premium if they comply with Govt, or will insurers use a high opt-out rate to jack up premiums all round?
BTW I will donate to charity of my choice if Greg Hunt stages a meeting with any privacy advocate before next weekend. (MyHR is, after all, "arguably the world's leading and most secure medical information system at any national level".) Handy word is 'arguably'.

Anonymous said...

Maybe they could engage some of the persons in this article

https://www.theguardian.com/commentisfree/2018/jul/20/there-is-no-social-license-for-my-health-record-australians-should-reject-it

I recall David you asked this question on social license sometime ago. The ADHA has nowhere to run, they have been warned many times, rather than take notice, they have split the community and excited those that could have helped.

Anonymous said...

I think NIB understand that the Government and Tim zkelsey are desperate to cling to anyone who will say this is worth it. Mr Hunt is just being played

Anonymous said...

they have split the community and excited those that could have helped.

They have also sent many into exile.

They way this has been stufffed up I would hope the DtA be given temporary oversight of the contract for MyHR operations and everyone from SES3 to SES1 level be released of the employment. It has been clearly 2 years of evidence the ADHA was unable to operate as an organisation and this is the result with many more failures to come. Nice experiment but the cost benefit has not proven its value

Anonymous said...

12:06, I as many would welcome such a move that engages subject matter experts for an open and honest debate. I believe however the government and ADHA will hide and hope this blows over. Faced with actual evidence their argument is on fragile ground. It’s proven to not be safe (clinical), nothing is secure and seamless might work for a garment but further inforces the fact once your in you have unfettered access

Bernard Robertson-Dunn said...

The story so far: Tim has embarrassed Greg. Greg and Tim have embarrassed the PM. Not good. It's not actually Tim's fault, but what is his fault is taking on the job in the first he should have known better.

The gov't must be hoping this week is a spike. It may well calm down a bit but my guess is it will either plateau or snowball. It's not going to go away.

The gov't will ignore rational analysis like this at their peril.

"There is no social licence for My Health Record. Australians should reject it"
Julia Powles, The Guardian

https://www.theguardian.com/commentisfree/2018/jul/20/there-is-no-social-license-for-my-health-record-australians-should-reject-it

BTW, Tim has angered/bullied the press both here and in the UK. It is significant that the guardian (a UK publication) is being so vocal. There are people from the UK both watching and participating in the shit-storm on Twitter and in the media, getting their own back for care.data. They, most certainly, will be keeping the heat on the gov't's feet.

Another guess. The gov't can't bow to media generated pressure, therefore they will endure another 12 or so weeks of mud slinging. Things will then go quiet and they will come out with a statement similar to:

"In the light of the very vocal public reaction in recent months we will conduct a thorough review of the system to determine if opt-out is the best approach to promoting an otherwise very important initiative".

From then on, things will be dampened/quieten down and give them time to delay things until the next election, after which you won't hear much more at all about the dear departed myhr. Just like the Australia card.

The myhr will either remain extant but moribund, or be put out of its suffering and decommissioned. What is also likely is that the gov't will not learn the lessons of failure.

Of course I could be wrong, in which case, unlike the gov't, I will learn from my mistakes.

Dr David G More MB PhD said...

And remember 500,000 punters are voting in 5 bye-elections on Saturday. Wonder what they all think?

David

Anonymous said...

@Bernard - It's not actually Tim's fault, but what is his fault....

Well yes and no. The Royal Report gave Tim Kelsey, the Board and the Minister many options, they collectively (mostly on advice from Tim Kelsey) to go optout on the current system design, all it needed was a bit of user design and national tour it seemed. They achieve the national tour bit and did some UX updates. They probably did not engage all the right groups and certainly have created an atmosphere of mistrust and secrecy. We hear tales of organisational blunders frequently, and although ultimately the CEO should be held account the COO would be responsible for this and the failure to quickly transition to an operational readiness in two years is shameful.

For a government agency that was handed this on a plate they have done a poor job and I am the poorer for it as a patient

Trevor3130 said...

Opt-out will not go away. The three bigger non-clinical beneficiaries of centralised aggregate health data are public health, financing and pharmaceuticals. We've heard from #2 - PHI via NIB.
#3 operates through tame mouthpieces and the stuffing of party coffers. Key phrases to look out for include "life-saving", but the test will come when incapacitated citizens are being processed through EDs and it's apparent that shortcuts to their assessments are not possible, despite what MyHR has to say about them.
Haven't heard much from #1. I wonder if that's because some of the key data is held captive by States. Trouble is, public health hangs off government munificence and it would be career-bending to speak out against MyHR. But, you never know, Mr Hunt may observe that, arguably, MyHR could be the driver for abolishing obesity, if the scale readings of every school child at the start of every school semester are piped into MyHR.

Bernard Robertson-Dunn said...

The one question that David and I (mostly David) have been asking for years is - who is this system for?

It serves neither clinicians nor the pubic well, because it tries to serve both.

In order to engage and appease patients, control over content has been ceded to the patient. Not just in terms of who can see what, but over what is in it. Both are deal breakers.

Patients are critical to content. If they don't go to their GP and get involved in things like the SHS etc, then very little will get uploaded (at least 80% of existing myhrs are empty of an SHS) - another deal breaker.

Although not stated explicitly, responsibility for the accuracy, completeness and currency of a patient's myhr lies with the patient - another deal breaker. A GP's health record is updated by and for the GP at the time of consultation. Obvious, logical and justifiable. The benefit and the cost are both due to the GP.

For it to be of clinical use it needs to have more than just allergies, immunisations, medication lists (which are unreliable and chaotic). Event summaries are pretty meaningless - the value is in the detail and context.

The information also needs to be in the language of clinicians, not in a simplified form for patients, which requires significant time and effort to achieve and will lose meaning - two more deal breakers.

Myhr does not advance the value of health records, it has the unintended consequence of turning your poor GP into a data entry clerk. And don't forget, there is no value for the GP in putting data they already have into the system.

What needs to happen to advance health record systems is to implement capabilities to analyse, interpret and transform the data. That is not only very much harder, it is very hard indeed. Addressing this is not happening in ADHA or anywhere else in Australia or the world. I've looked.

The myhr doesn't even start to move down this track, all it does is create a distraction from the real game (improving the efficiency and effectiveness of health care) and destroy trust in government institutions which, love them or hate them, are critical to modern society.

And if you think this is only happening in the health domain:

Watchdog's secret report lashes ATO for weakening trust

https://www.smh.com.au/business/the-economy/watchdog-s-secret-report-lashes-ato-for-weakening-trust-20180713-p4zrem.html

All this lessening of trust is likely to result in a push-back to the government's attempt at a trusted on-line identity system.

Dr Ian Colclough said...

I agree with all that you just said Bernard (5:19 PM). Even so I doubt there will be any change in the status quo unless the public and the doctors make their voices heard, and that includes the peak bodies which have been both neglectful and complicit in saying what the bureaucracy has wanted to hear rather than what should have been said.

I have often said the peak bodies, through their spokespeople, have clearly not understood the many issues which they have so frequently pontificated upon.

The steam roller will keep trundling along because, as I have often said, it's too big to stop and there is too much political capital tied up in it by ALL stakeholders - it's a classic bureaucratic muddle. At some stage, probably when it becomes too embarrassing for the Prime Minister to do nothing, he will instruct the Auditor-General to become involved - but when?

Still, that too probably won't change much UNLESS the peak medical bodies do a somersault and start admitting things like:
- "we were wrong, it should go back to being opt-in", or
- "it doesn't offer the functionality we expected so it isn't really of much use to doctors or their patients", or
- "it needs to be put on hold for more R&D before being either discontinued or further deployed".

Bernard Robertson-Dunn said...

Ian, Don't forget, PM's and government change. If it isn't killed it will probably just starve to death as GPs ignore it. Over 80% of existing myhrs are effectively empty. That ratio is probably going to stay constant.

Researchers, ED departments etc will discover there's no value in the data. Even in the 20% that have some it is likely to be stale and very (as opposed to only somewhat) unreliable.

The peak bodies, as in the government, just don't understand the intricacies of health data and expect simple solutions to work. Even the new CRC my find it difficult to make and significant progress - they come from the old way of thinking.

Dr Ian Colclough said...

"they come from the old way of thinking" @7:23 PM. They do indeed Bernard.

I have been advocating new ways of thinking about the 'problem' for over decade and I do not resile from that.

From time to time I have met with all the senior management of NEHTA and the ADHA and no-one has shown the slightest interest in even wanting to step forward to first base to explore what those 'new ways of thinking' might be.

No matter what ADHA does today the old ways of thinking will prevail and the results will be the same. New ways of thinking are not welcome; it's too confronting, too challenging and it might lead to changing the way they do things and that would be too disruptive to be comfortable!

Anonymous said...

To confronting and too disruptive. Yet those how push the MyHR believe they are innovative disrupters. Yet their narrative betrays their grasp on modern technologies or medicine. They talk of the fax and the filing cabinet as arguments for the MyHR, yet the MyHR breaks the GIGO aspect of information- garbage in garbage out. GPS already use powerful software ( other than apparently key advisors to ADHA). Sure there are oppertunities to improve communications between actors in a patients journey but a centralised online shoebox filling system has no place in the modern world. Far from helping it is actually a ball and chain and one that needs to be archived off and placed in a museum.

I note a key advisor to ADHA and the RACGP now quotes this is no longer about saving lives. Things have become so confused even the ‘for’ campaign no longer share a common message.

Bernard Robertson-Dunn said...

Of course the myhr is disruptive.

It disrupts a patient/GP consultation while the poor GP consults the AMA's guidelines, all 27 pages of it, accesses the patient's myhr to ensure that what they put up is consistent with all that is there (as the government advises) talks with the patient about the content of the SHS and then, in just a few clicks finally uploads the revised SHS

Or just clicks on the old SHS so that it qualifies for the ePIP.

The AMA guidelines
"AMA Guide to Medical Practitioners on the use of the Personally Controlled Electronic Health Record System"

https://ama.com.au/system/tdf/documents/AMA%20Guide%20to%20using%20the%20PCEHR%20Final%20June%202012%20Formatted%20300812.pdf?file=1&type=node&id=36028

Anonymous said...

If you have to tell people you are an innovative disrupter, then it is highly likely you are not, more likely a buzzword bingo player.