Quote Of The Year

Timeless Quotes - Sadly The Late Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

or

H. L. Mencken - "For every complex problem there is an answer that is clear, simple, and wrong."

Thursday, February 22, 2018

It Looks Like The Telstra Health Developed National Cancer Registry Is Almost There!

This popped up a few days ago:

Major component of Australia's cancer register still without go-live

By Justin Hendry on Feb 14, 2018 1:37PM

Planning will recommence after delivery of first phase.

The replacement of Australia’s outdated bowel screening register remains without a go-live date almost a year after a complex data migration process stalled the original launch.
Australia’s new Telstra-built cancer screening register is a single platform that will replace the paper-based national bowel screening register as well as the eight separate cervical cancer screening registers operated by the states and territories.
Telstra won a $220 million contract to implement and maintain the single national record for the screening of cervical and bowel cancers in May 2016.
The register was first intended to go live in time to support both the national bowel cancer screening program in March 2017 and national cervical screening program in May 2017.
But the go-live was pushed back by a complex data migration process, stalling the bowel and cervical cancer programs and resulting in extra costs for the Health department.
The system officially went live on December 1 with new human papillomavirus (HPV) tests for cervical cancer, but will remain only partially functional until next month when the transfer of historical information from the state and territory cervical registers is complete.
However the overhaul of the bowel cancer register looks some time off, with a senate committee today informed that there was currently no go-live date for this major component of the program.
“The national bowel cancer screening register planning will recommence at a point in time when we fully deliver the register service for cervical,” first assistant secretary of the national cancer screening taskforce Bettina Konti said.
Security, privacy plans now in place
The Department of Health also today revealed it had acted on criticisms about the system's security and privacy provisions.
A June 2017 audit of the system's procurement revealed the Health department had no plan for how Telstra would manage the privacy and security of the register a year after the contract was signed.
More here:

So it seems almost a year late we are almost there and the register will disappear from the agenda now it is fulfilling is purpose.

It is also good that the issues identified in the security and privacy audit have been addressed.

You have to wonder what plans are in place to extend the range of the register to cover other cancers that are screened for (breast, prostate etc.) so as to create a one stop shop for all your cancer screening needs. I don't know just how the myHR fits here and if there are overlaps or gaps and if all this capture by Government is a great idea or not?
 
Time will tell I guess.

David.

22 comments:

Anonymous said...

Almost there?! You're dreaming. There is nothing definitive in this story to suggest it is almost there. Plenty to suggest Telstra Health is flying by the seat of its pants.

….. the overhaul of the bowel cancer register looks some time off, with a senate committee today informed that there was currently no go-live date for this major component of the program.

“The national bowel cancer screening register planning will recommence at a point in time when we fully deliver the register service for cervical,” first assistant secretary of the national cancer screening taskforce Bettina Konti said.

Anonymous said...

... and when a contract of this size is entered into by the government and we then find that ... "A June 2017 audit of the system's procurement revealed the Health department had no plan for how Telstra would manage the privacy and security of the register a year after the contract was signed."

.... you could be forgiven for thinking that both the Department and Telstra Health were quite incompetent. Why then would one ever consider entrusting complex and important health record information to either party? So much for Telstra's unqualified 'expertise' as a health IT developer. Thank you Shane Solomon.

A relatively simple thing like the Cervical Registry is a very long way off from a National Cancer Registry - breast, bowel, brain, lung, prostate, ovarian, stomach, bone, pancreas, leukaemia, and many more.

Ask yourself - how many more millions of dollars will be siphoned out of the Department's coffers by Telstra each time they are asked to 'ADD' another 'cancer' to this poorly designed so called 'national' registry.

Bernard Robertson-Dunn said...

When there are no domain specialists (i.e. people who actually understand the processes and data in the system, not project managers and IT people) and a telecommunications company get together to try and deliver Digital Health, which is highly complex in terms of what it does and the environment in which it works, it is not surprising that it has a few problems (which is code for totally stuffed).

It's classic government/big company IT. Everybody understands project management and something of the technology, nobody understands what the technology is supposed to do.

But they think they do.

Dr Ian Colclough said...

Bernard said "It's classic government/big company IT. Everybody understands project management and something of the technology, nobody understands what the technology is supposed to do."

Exactly. I think 12.56 PM raises the possibility of what could prove to be cause for huge concern when suggesting that "A relatively simple thing like the Cervical Registry is a very long way off from a National Cancer Registry - breast, bowel, brain, lung, prostate, ovarian, stomach, bone, pancreas, leukaemia, and many more."

I suspect we won't really know the real truth of that for quite a while, however, if additional costs (?? $millions)are incurred each time another cancer domain is added to the National Registry we won't be too surprised.

Anonymous said...

Everybody understands project management

I hate to rain on the parade but my experience bugger all understand project management. Those that do are unable to as decision are made without consultation or thought. They all think they understand the theory but have no crash or experience in the field and should not be anywhere near projects.

Bernard Robertson-Dunn said...

Talking about projects not meeting deadlines - and this is only a website for heavens sake:

My Health Record Website Redevelopment
https://marketplace.service.gov.au/digital-marketplace/opportunities/647

"The Australian Digital Health Agency (the Agency) is seeking to redesign and redevelop the My Health Record public-facing awareness website on the domain www.myhealthrecord.gov.au"

"• The project should be completed by the beginning of January 2018 for testing.

• The website will be launched by the end of January 2018."

Assuming they started at the end of October they are already one month late on a three month contract.

Oh well, business as usual. Lots of promises, a failure to deliver.

Anonymous said...

Bernard I am sure the ADHA under estimated the effort to migrate to a new platform architecture. The tender stated they were at discovery phase. There is not indication that an information layer exists or even a design brief, just random research and stuff, which would take a bit to pull together all the time I am sure ADHA moved the goal posts.

Luke much of Government they are no longer savvy customers and no not what they are asking for or what it means to achieve it.

Bernard Robertson-Dunn said...

I agree that they underestimated the effort required to revamp the website, especially when the three month period included Christmas.

However, they did specify a web launch day, which they didn't meet.

IMHO, the reference to discovery referred to the phase the project was in at the time of the tender. The output of the successful tenderer's work was supposed to be a fully working website by the end of January.

Three things suggest to me that it will be quite a long time before the new website, as described in the tender, becomes available.

1. "The content will undergo a complete audit and update. An interactive self-help facility will be created to enable users to more easily find the information they are looking for. The website will facilitate the links between the My Health Record website, MyGov and the OptOut portal. The website will provide information for both providers and consumers."

2. everything in "What's the key problem you need to solve?"

3. everything in "Describe the users and their needs"

It is also interesting that they expect users to include "Parents and their children (newborn to under 14);"

It would seem that ADHA cannot move to opt-out until:

DHS implements its opt-out portal.

ADHA implements the new myhealthrecord.gov.au website

Legislation is passed permitting DHS to gather data on those who wish to opt-out.

They have a lot to do before September, which is the default start of the opt-out period, although they could put it off until later. But that might overlap with the next election, which could be fun, and risky.

Anonymous said...

Bernard, the individual in charge of the MyHealthRecord website redevelopment is Darian Eckersley, Senior Director Design at Australian Digital Health Agency, Sydney.

Anonymous said...

Darian Eckersley, BA, Visual Arts.

At least he's not a project manager. Oh, he's managing a project. WCGW?

Anonymous said...

WCGW? From his perspective nothing much. Some big consultants will redesign the web site under contract. WCGW? From their perspective nothing much. Why is this so? Because as far as both of them are concerned designing a user friendly web site that is reasonably easy to navigate is a walk in the park. It's not necessary to be au fait with health stuff or to 'understand' the multiple ways health information is used or might be used or accessed. Why would they need to know that?

Anonymous said...

WCGW? "The content will undergo a complete audit and update".

The dependencies don't deliver, the project gets delayed and the plan for opt-out goes tits-up.

Dr Ian Colclough said...

@ 3:41 PM I noted your tongue-in-cheek comment. Lest you be misunderstood permit me to add my two bob’s worth. As an absolute basic it is most definitely necessary to be au fait with health stuff and to 'understand' the multiple ways health information is used or might be used or accessed. However, a lot more than that is required if the core design team overseeing the web portal development is to ensure they get it ‘right’. This is far more complex than most people imagine.

I spoke with Darian a few weeks after he was appointed last year and gently tried to get that message through. I was not confident he understood, but it’s possible he did. Time will tell.

Anonymous said...

None of which has anything to do with the cancer screening register. The failures of this project are causing unnecessary deaths as stated by those who commenced it are skilfully forced or shamed the parliament into approving Telstra to undertake it even though it was clear the work was not ready to start nor Telstra was ready. Heads should roll

Anonymous said...

A health minister who is a lawyer.

The head of ADHA who has a history degree and worked as a journo.

A project manager on a health oriented website project who has a degree in Visual Arts and the project is already running late.

A telecommunications company charged with developing a cancer screening registry and can't get it working.

A national health record system that the government is forcing on everyone because nobody was using it.

And we are supposed to be leading the world in Digital Health?

Anonymous said...

I would not be so critical of inderviduals trying to do the right thing. The ADHA is a nightmare to do anything in. It is an utterly broken organisation. We cannot get things approved, people and organisations experience long delays in procurement of goods and services, and then long delays in payments.
Processes, policies and systems are broken, non-existent and have little relationship to each other. There are multiple divisions that now operate as seperate entities with their own agendas and modes of operating. The general manager of our organisational capability is incompetent and so far out of her depth it creates a bad atmosphere and difficult working environment as others have called out on this site.

Leaders of digital health, the ADHA can’t even tie its shoe laces. So I doubt the problem resides with who or who is not project managing, it is more they have operate in an environment that is a shame and void of any skilled leadership or organisational management. Does this place risk on the MyHR, yes a very high risk.

Bernard Robertson-Dunn said...

Three months late on a three months project, www.myhealthrecord.gov.au has finally had a change of look and feel. I don't know if and/or how much content has changed. What I've looks at is pretty much the same as it was. There may also be new information on the site.

An interesting page is
https://www.myhealthrecord.gov.au/for-you-your-family/howtos/opt-out

on which is a "related topic" link which refers to:
https://www.myhealthrecord.gov.au/for-you-your-family/howtos/opt-out

i.e the related topic is itself. Looks like they still haven't sorted op-out yet.

Anonymous said...

Deciding whether to opt out - but I still can't understand how one can manage access to one's My Health record. The glossary doesn't help - see https://www.myhealthrecord.gov.au/glossary.
E.g.

"Record Access Code
A Record Access Code (RAC) is a code which can be used to restrict access to an individual’s My Health Record. The code is provided to a healthcare provider for all providers in the linked healthcare organisation to grant access to the individual’s My Health Record."

Here is another: the following Glossary entry seems to confuse a healthcare provider organisation (HPO) with the identifier for a healthcare provider organisation (HPI-O):

"Assisted Registration Tool
The Assisted Registration Tool (ART) is purpose built software to enable an HPI-O to assert a patient’s identity and then submit their details to the My Health Record system for registration."
This is like saying a 'driver's licence number' can drive a car. That's silly 'cos it can't even steer -it's just a number.

ADHA - Please get someone sensible to edit your website information. It makes us nervous and opt-outish.

Anonymous said...

https://www.myhealthrecord.gov.au/disclaimer

...the Australia Digital Health Agency does not guarantee, and accepts no legal liability whatsoever arising from or connected to, the accuracy, reliability, currency or completeness of any material contained on this website or on any linked site.

The Australian Digital Health Agency recommends that users exercise their own skill and care with respect to their use of this website and that users carefully evaluate the accuracy, currency, completeness and relevance of the material on the website for their purposes.

Well that's OK then. The website is about as reliable as the My Health Record itself.

How "users carefully evaluate the accuracy, currency, completeness and relevance of the material on the website for their purposes" isn't explained.

Trust us, but don't rely on us.

Eric Browne said...

Re: April 19, 2018 10:13pm Access to My Health Record.
Two concepts confusingly used in the MyHR marketing guff and in the legislation are "access" and "healthcare provider".
Access refers to obtaining (e.g. viewing or downloading) MyHR content. It does not usually refer to uploading content to the MyHR.
Healthcare provider can refer to an individual or an organisation. Permission to connect to the MyHR is performed at the organisation level via an HPI-O.

When a MyHR is created for an individual, the default settings are applied, meaning that consent for organisations to upload is assumed, and no controls are placed on access.

Apart from MBS and PBS data, restricting uploading of documents to the MyHR must be performed on a document by document basis at the source - i.e. the organisation producing the document. It cannot be done via the MyHR system.

I am not aware of any mechanisms having been established by organisations to allow patients to restrict uploading of documents by changing the default standing consent, but it would be feasible for organisations to build that capability into their systems.

A Record Access Code can be used to restrict access by healthcare provider organisations to view/download MyHR documents.

Once you have created a Record Access Code, your MyHR is closed for access to all provider organisations which have not been given the code and entered it into the relevant provider software.

If you go to a GP clinic which has been set up to access the MyHR system and give your doctor the code, they may know how to enter the code in their system to gain access. Normally that process would give access to the organisation - probably the clinic, but perhaps a group of clinics under single management.

On the other hand, if you go to a hospital for an outpatient appointment say, and hand over your Record Access Code, you would normally have no idea how many providers you are giving access to. It might if it were a Qld public hospital, for example, be the majority of staff in Qld Health - perhaps 50,000? It all depends on how the hospital's software access to the MyHR system has been configured. It is unlikely that any of the staff you encounter at a hospital would have any idea of the scope of their organisation with respect to MyHR access.

Bernard Robertson-Dunn said...

If you think the https://www.myhealthrecord.gov.au/disclaimer is bad, have a look at ADHA's website's terms of use.

https://www.digitalhealth.gov.au/website-terms-of-use

especially this part:

"Disclaimers and limitations of liability

a) Subject to any express written agreement between you and the Agency to the contrary and to the fullest extent permitted by law:

the Website and the Content are provided on an 'as is' basis;

you use them at your own risk; and

the Agency disclaims all express or implied warranties of any kind including, without limitation, as to accuracy, adequacy, completeness, merchantability, fitness for a particular purpose and non-infringement of third party rights.

b) Where legislation implies any condition or warranty which cannot be excluded, the Agency’s liability under any such condition or warranty will be limited to:

in the case of goods, the replacement of the goods, the supply of equivalent goods, the repair of such goods, the payment of the cost of replacing the goods or of acquiring equivalent goods, or the payment of the cost of having the goods repaired; and

if the breach relates to services, the supplying of those services or the payment of the cost of having the services re-supplied.

c) In no event will the Agency be liable for any direct or indirect loss or damage whether through negligence or otherwise (including, without limitation, special, consequential or exemplary damages; damages for loss of profits, goodwill, loss of data; or other intangible losses) suffered by you or any other person as a result of, or in connection with your use of the Website, Content or linked websites."

Anonymous said...

This is illuminating. Subsection (a) should be widely distributed in the Medical Observer, the Australian Doctor, the Medical Journal of Australia and all Medical Defence Union Newsletters to Members. That the mainstream media has not picked this up is bewildering in the extreme, particularly as the naive public have funded this with $2Billion of taxpayer's money under false pretences. This is as corrupt as anything we have witnessed in the revelations of the last few weeks with Facebook, Cambridge Analytica and the Banking and Finance Royal Commission.