Quote Of The Year

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


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

Friday, April 27, 2018

A Comment For The Ages I Believe. Just Too True To Ignore!

This popped up last week:
Anonymous said...
...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.
----- End Comment:
I guess that must include the myHR since surely it is a linked site!
Here is the shiny new front page:

What is My Health Record?

My Health Record is an online summary of your health information. You control what goes into your record, and who is allowed to access it. Share your health information with doctors, hospitals and other healthcare providers from anywhere, any time.

Learn more about My Health Record

Here is the link:
For the first time we are fully told what to do to opt out of having a myHR. (Item 5)
However, if your record is created for you it will hang around for a very long time:

Cancel my record

If you have a My Health Record, you may cancel your record at any time.
You can also cancel the record of someone else if you are their authorised representative.

How to cancel your My Health Record

To cancel your My Health Record, or the record of someone in which you are their authorised representative:
  1. Log in to your My Health Record through myGov.
  2. Select the 'Profile & Settings' tab.
  3. Select profile and navigate to the bottom of the page.
  4. Read the information and click on ‘Cancel My Health Record’.

What happens when you cancel a My Health Record?

When you cancel your record, it means that:
  • Healthcare providers will not be able to upload documents to the record, or access the record - even in an emergency.
  • You, or your representative can only access the record by making a request to us.
  • Once your record is cancelled, it will be retained for a period of 30 years after your death or, if the date of death is unknown, for a period of 130 years after the date of your birth.
  • Your My Health Record may be accessed by us for the purposes of maintenance, audit and other purposes required or authorised by law.

Records contained in local clinical information systems

Even if you cancel your My Health Record, healthcare providers will continue to hold copies of any records they have uploaded to My Health Record stored on their own clinical information system.

Re-register a cancelled My Health Record

If you have cancelled your My Health Record, you can re-register at any time by:
If you re-register online, your record will include information which was in your record before it was cancelled. If you re-register via the call centre you can ask for the record to be cleared of all previous documents. These documents will remain in the archive but will not be able to be viewed by you, your representatives or your healthcare providers.
----- End Extract.
Usual rules therefore apply – stay away unless you have some compelling reason to use it!
Just why is it you can’t delete your record – technical reasons they say, but with the GPDR making Facebook and Google be able to delete records how long is it going to be the case with the myHR. The ADHA’s attitude to whose data it is must change and fast!


Bernard Robertson-Dunn said...

and then there's the site map:

"Insert some explanation about the sitemap here."

Even the content review leaves something to be desired.

Anonymous said...

They also provide a useful number for other languages, you can have any language so long as it is English. What a sloppy bunch of cow folk

Anonymous said...

The most terrifying words in the English language are: I'm from the government and I'm here to help. Ronald Reagan

Anonymous said...

I must say the site is well latex out easy to navigate and not overloaded with to much pointless information. I am pleased there is no ‘the tyranny of the fax’ to be found.

A little quality control would have gone a long way. The site is riddled with syntax errors, rendering issues on some pages and some contact information seems incorrect.

Yes agile might say MVP. But a national entity with hundreds or millions of dollars and seeking to portray trust in managing online health records, MVP does not cut it I am afraid. 3/10 Tim sorry but this is a communication mess up, something we where informed was one of the major problems with MHR progress.

Anonymous said...

The record retention/archive requirement has always been part of the deal. I am not convinced a record will not be created if you opt out. I am more and more unsure as week on week and becoming daily the ADHA seems unable to operate effectively especially when it comes to anything to do with IT. Someone needs to drag the IT manager into a room and have a long hard discussion. Either this is incompetence or a lost control and respect of the group issue.

Anonymous said...

As Anon 7:47am said, the retention timeframe has always been there from the start - but that was when it was opt-in. And even then, it caused concern over the sheer amount of data that would have to be stored, managed, secured etc. In an opt-out environment the magnitude of that problem is now blown out of any manageable proportions - especially given the track record of ADHA to date. And since the early days of this debacle (nearly a decade on now) the rise in identity fraud and hacking of health records has risen dramatically. This DB will be a treasure trove for crooks but you also have to ask the question - why do they want to keep it for so long and just what are they going to do with it? Why keep the medical records of dead people? Unless you are going to utilise them in some de-identified way. Guess that is what they mean by these records only being accessible for 'other approved purposes'.

Anonymous said...

Well the whole concept was based on the Banking industry, dead people are useful. That said there are valid research purposes. I think in reality the ADHA is not demonstrated it is a well oiled and disciplined Agency fit to operate in this space. For example, interoperability and new models of care. Just want will they do other than gather stories? I struggle to see my ability to design and coax change into happening.

The framework for action speaks of a need of a lost capability.

Anonymous said...

I note the errors are still present. I did find the link for software developers bemusing. There is nothing in there for software developers and seems to have been stagnant for sometime. Anyone know what might be going on, it was launched with such fanfare and promise. Reminds me of a halve job from the NEHTA days

Anonymous said...

7:55 PM Racheal De Sain has left the ADHA, this is just an example of people behind her were/are visionless and lost when no one is there to instruct them, was the same when I worked at NEHTA. Great BS artist but lacks substance

Anonymous said...

The so called developer site was and is a bit of an early failure, nice idea but poorly envisioned and woefully executed. In reality it is nothing more than a set of links to other sources. The ADHA would do well to switch it off and look to the framework for action to get some fresh ideas.

Anonymous said...

Rachael De Sain: education - the University of life.....

Can we see a pattern here?

Anonymous said...

I am not convinced a formal tertiary education or not is a problem. Your ability to sit through a lecture does not qualify you as being clever. Problem can take all sorts to solve, many perspectives and experience can make a good mix. That said the dismissive nature taken towards leading experts in the formation of ADHA was highly questionable but that is the underbelly bullying culture of some at the ADHA.

Anonymous said...

It should by now be clear to all and sundry that, just like its predecessor NEHTA, ADHA is totally lost and beyond being salvageable.

Bernard Robertson-Dunn said...

Talking about NEHTA...

I was reading Doing Health Policy in Australia (2008)by Paul Dugdale, BMBS, MA MPH, PhD, FAFPHM. He used to work at ACT Health, I think he's now Director at the Centre for Health Stewardship at The Australian National University.

It says this:

"The major areas in which NEHTA is introducing standards and pathways for information technology transformation are supply chain management, integrating integration of communication standards between hospitals and other agencies secure messaging and information transfer, consent models that address the issues of privacy and access to information, development of indexes and directories so patients and clinicians can find each other's data, and of course standards for the clinical data themselves.

Once these building blocks are in place, it will allow full communication between all the different clinicians and units working within the health care system.. From the patient's point of view, it all ends up in an event summary of their health record, although that health record itself need not ever be held comprehensively together in one single location."


Was this true in 2008?
How much of this did NEHTA deliver?
What's missing?
How does the ADHA strategy reflect this vision?
Is this vision realistic?
What lessons can we learn after 10 years of government effort and $2b?

Dr David G More MB PhD said...

Bernard some files towards the bottom may give you answers - as might the NEHTA Annual Reports



Anonymous said...

Bernard - was this true in 2008? Yes it was, many efforts made daily good progress, what happened? The PCEHR now MyHR. It stopped secure messaging, destroyed clinical informatics and made terminology a second class citizen. Architecture and Standards are all but relegated to the sidelines, emerging into the light only briefing as someone pretends to care.

Bernard Robertson-Dunn said...


Did the National Product Catalogue/Australian Catalogue of Medicines happen?

The lesson government seems to have learnt is that you can ignore your mistakes and just keep doing the same old thing, but leave out the hard bits.

Unfortunately, as tygrus pointed out

health care is very hard.

Dr David G More MB PhD said...

Yes to both!