Sunday, November 29, 2015

It Seems I Was Really Right About The Purpose Of The PCEHR. It Is Nothing To Do With Helping Provide Doctors The Tools They Need.

This tender appeared a few days ago:

Request for Expression of Interest for a Framework for secondary uses of My Health Record.

ATM ID                              Health/041/1516
Agency                              Department of Health
Category                           80101504 - Strategic planning consultation services
Close Date & Time       21-Dec-2015 2:00 pm (ACT Local time)
Publish Date                   26-Nov-2015
The basic description is here:
The Request for Expression of Interest will require respondents to articulate how they will deliver a framework for the secondary use of My Health Record system data (previously ‘Personally Controlled Electronic Health’). Respondents will be expected to include a detailed description of how they would conduct community consultations regarding a draft Framework, to the required standards within the stated timeframes.
The final Framework will enable the System Operator (currently the Secretary, Department of Health) to make informed decisions about the benefits, risks and costs of options presented for secondary uses of My Health Record system data. Respondents should note that the Department intends to assess expressions of interest and short list submissions to identify organisations who have the experience and expertise required. 
Here is a little bit more detail:
From the tender document:
2.1    The Commonwealth of Australia acting through the Department of Health (‘the Department’) is responsible for better health and wellbeing for all Australians. The Department aims to achieve its vision through strengthening evidence-based policy advice, improving program management, research, regulation and partnerships with other government agencies, consumers and stakeholders.
2.2    Secondary use of data from the My Health Record (previously called the ‘Personally Controlled Electronic Health Record,’ or PCEHR) system for research, policy, system use, quality improvement and evaluation activities can support the capacity, quality and safety of healthcare and the healthcare system and lead to innovative approaches to healthcare.
2.3    A framework for the secondary use of data will enable the System Operator (currently the Secretary, Department of Health) to make informed decisions about implementation of proposed arrangements for the secondary use of data including community consultation, risks, benefits and costs of options presented.
2.4    The final framework will ensure that personal data contained in the My Health Record system will remain secure and always be de-identified for secondary use purposes.
2.5    The final framework will also provide assurance that the My Health Record system data is available for the purposes provided for by the Personally Controlled Electronic Health Record Act 2012 (note that this Act will become the My Health Records Act 2012 in early December 2015, following Royal Assent).
----- End Extract.
Funny that just last week I said:
“If you are looking to provide clinical utility for most of the stated purposes of the PCEHR all that is needed is the Shared Summary. Of course you can create a huge pile of results and prescriptions but how often, if ever, is anyone going to actually wade through all the junk to find something relevant, rather than just ring the relevant provider etc?
The only reason a national system would want the results of billions of blood test results has to be for some - unannounced - data mining project or the like.”
See here:
Well it has now the plan been announced - and even worse where is the Tender on making the PCEHR more useful and where is the Tender on evaluation of the PCEHR?
It is clear the Government has no interest in supporting the quality and safety of care as a priority - rather than setting up a tool to assist them micro-managing and controlling clinical practice.
I am sure the RACGP and the AMA will now understand just why the Government is trying to compel use of their hopeless system by clinicians - to obtain the information with which they can control what goes on - and not for any clinical - but rather financial reasons. I seriously doubt they will fall for that!
Everyone should also remember that de-identification in this day and age is getting to the stage of a practical impossibility - so to trust any framework developed for government is pretty unwise.
For individuals - putting your information into this national system for the Government to exploit - without your consent - is just folly in my view. It may, at any time, come back to bite.
This lot simply can’t lie straight in bed and are not to be trusted. For five years they have claimed the PCEHR was a clinical care tool - and now we know that was a ‘whopper’!


Anonymous said...

The PCEHR exists for one reason only - to prosecute GPs who "over-service" their patients. Where over-service is defined by a bunch of ignorant public servants hiding behind their desks in Canberra.

Minister Ley has no idea the trouble these functionaries are going to do for her career.

Anonymous said...

Won't be long before the start charging a license fee to software development companies to connect to the Mining Your EHealth Record and probably kicking around licensing NEHTA specs, however as they were paid for by the Jurisdiction through tax payer funding I am not sure this is possible plus you could not give them away in the rubbish state they are in

Anonymous said...

Anonymous, are you suggesting Goverment is about to become a major software solution provider for e-health?

Trevor3130 said...

From Government gets it right on mental health

It is good, then, that the government has realised that the best way to connect young people, who have grown up with digital technology at the centre of their lives, is indeed through digital technology. A digital platform called Synergy is being developed by the Young and Well Cooperative Research Centre. Synergy will allow young people to enter the mental health system in a variety of ways. Given that as many as 99 per cent of people in this country aged between 16 and 24 go online every day, providing such support evidently has great potential to not only save lives but to increase the wellbeing of so many people.

Is this an(other) example of magical thinking in relation to Health IT?

Anonymous said...

I notice the term "de-identified" being used yet again. Anyone with any understanding of health informatics knows that this is not a trivial exercise, and cannot be guaranteed unless you know exactly what information the receiving entity already has.
I suspect that this has been issued by someone who thinks "de-identified" means stripping the name and some other demographics from the data, and this is all that is needed.
Data matching has now become so sophisticated and such a trivial exercise that pretty much any collection containing useful information can be matched to other collections to "re-identify" any entry.

Karen Dearne said...

Well, they didn't take long to reveal their true motives, now that they have the mandatory participation locked in and a committee that will steer ACeH in the direction the government wants...

I have always believed the endgame was making use of personal health information, rather than supporting better care for individuals as and when needed.

They'll be happily sharing it across government departments and with private companies in no time flat

And commenters are right, data matching will be used to match your medical information with every other retained bit of data they can put their hands on

Anonymous said...

Ha, another tender for yet another Framework. I can almost hear the snouts snuffling at the trough already.