Sunday, December 15, 2013

What Is Likely To Come Out Of The PCEHR Review? It Is Pretty Hard To Pick.

This appeared a few days ago.

Aussies to be automatically enrolled for e-Health records under changes

·         SUE DUNLEVY
·         News Limited Network
·         December 13, 2013 12:00AM
AUSTRALIANS would be automatically enrolled for an e-Health record and have to opt out to protect their health privacy under sweeping changes to the $1 billion white elephant.
A government review of the troubled computer system is also considering changing the extent to which patients control what appears on the record.
And doctors could get paid to upload patient health summaries onto the record to get more clinicians involved in using it.
Launched in July 2012 the Personally Controlled Electronic Health Record was meant to bring medical records into the digital age and contain an electronic patient health summary, a list of allergies and medications and eventually X-rays and test results.
Seventeen months after it was launched only a million people have signed up for the record and only one per cent of these records has a clinical summary uploaded by a doctor.
A government inquiry into the record headed by Uniting Care Health chief Richard Royle has been charged with overhauling the struggling policy.
The intention of his panel is "not to kill it but build on the foundation base", he says.
"If there is one consistent theme it is that the industry wants to see it work," says the man who will next year launch Australia's first digitally integrated hospital.
Voluntary sign-ups for e-health records have been slow and the Consumer's Health Forum which previously backed an opt-in record has told the inquiry it now wants an opt-out system.
More here:
On the basis that there was not actually much hard news in the article a correspondent pointed out that this might be a little ‘kite flying’ on the part of the review to test what sort of reaction was elicited.
Alternatively it might have just been adding just a little pressure for some release on the review’s thinking. As all will recall the Minister is to get an interim report by the end of 2013, but, I would guess there is little chance of the review becoming public for a good while yet.
The one bit of real news for me was that there had been 82 submissions. As of writing Eric Browne’s estimable list convers about 30 or so submissions - so there are apparently a good few that have not yet been disclosed. Missing are just what DoH and NEHTA are saying for example.
See here:
With all this said I have thought more about my blog of last week and have slightly changed my view. The main reason for the change is that I suspect (and have been assured) there is furious lobbying going on behind the scenes about the review outcome - and indeed the article mentioned above may be a response to briefings which have led to an awareness of that campaign.
See here for original blog on the topic.
It seems to me there are three possible outcomes.
First there is the option to fundamentally review the intent,  information model, consent model, patient control model, design purpose, architecture, planned role etc. for the PCEHR and to develop a major e-Health project that might actually deliver something that is useful for the key stakeholders. This would be smaller, more focused on delivery and clinical outcome driven and would prove itself useful gradually over time at hopefully a lower cost.
This would, however, be a fairly large, long, expensive, risky and complex project (or series of projects) - and it is hard to know what would be happening in the meantime. This would also probably be only slightly cheaper and smaller than the original PCEHR project. Having actually considered what is really needed in a national EHR record, it also might just work!
Second there is the ‘lip stick on the pig’ approach which tarts up a few things, hope pathetically that doing these minor changes will improve usage and utility while not costing much. This is what is being lobbied for as it will assist all the little piglets to stay pretty firmly attached to the funding nipple for a year or so more till the abject failure simply cannot be ignored. A review at that time may even the suggest that option 1 now needs to be done - and more milk and honey will flow. This is the easy political - kick the can down the road - option.
Third the program can be cancelled / phased out and a new better governed and designed approach can be adopted with efforts diverted to more basic activities. This is the preferable - but politically much harder - option.
So we have the PCEHR Heavy Option - fairly expensive and risky, might work but politically costs too much for a cash strapped government - the PCEHR Light Option - costs little but defers problem and gets nowhere- and last the PCEHR No Option, switch off and focus on the important e-Heath basics - right answer but hard sell.
You can be sure the vested interests, rent-seekers and disparate academics looking for a project  are in there very hard pointing  out how wonderful all this PCEHR is - how the evidence supporting it will flow if only we are supported for a few more years -  and what is another billion dollars between friends? Of actual evidence essentially they have none of course! Option 2 is preferred by these souls as it might just keep things going but my how much more we could squeeze from option 1 they must be wondering!
You choose. I would almost bet you some flavour of Option 2 is what we see. If that happens will be a bit sad!
Would love comments!


Terry Hannan said...

David, you have listed the options clearly on the possible government decisions of the PCEHR project. My next comment may be based on complete ignorance and thus stand to be corrected. Mr Royle is presented as a solution for the directorship of the Federal e-healtb project. This "rings" of another "administrative approach to the problems needed to be overcome. I do not read of "hear" the clinical ring about the whole process. To me this is of enormous concern especially if the review process is not entirely "open". Would the government permit him to clealry define his perspectives on e-health and whta experiences does he bring to the table. Being "fully digitalised" does not mean a hospital delivers better care. I also have concerns (as expressed in the past) about practitioners being paid to uptake an uproven technology.

Bernard Robertson-Dunn said...

If the minister decides to continue the PCEHR in anything like its current form it has the potential to be a "courageous decision."

Any anyone in politics should know what that is code for.

All it will take is an incident with a major negative health outcome and the media will be all over it like a rash.

The minister would be well advised to tread very carefully with this issue. A failed IT project is nothing new. Ignoring expert advice and harming people is a whole different ball game.

Anonymous said...

Bernard Robertson-Dunn said... If the minister decides to

Face the facts folk. The Minister is beholden to his advisers. He will do what they tell him he should do. One doesn't have to be an Einstein to know what they will tell him to do.

Dr David More MB PhD FACHI said...

"The Minister is beholden to his advisers. He will do what they tell him he should do. One doesn't have to be an Einstein to know what they will tell him to do."

And pray what do you think that will be? I do not accept that the Minister will do as he is told. Remember politics may cause him to do something different.


Bernard Robertson-Dunn said...

Ministers have two sorts of advisers - political and departmental.

My hope is that they both read this blog and learn from it. I'm not suggesting that the comments are always, or even ever correct, but they do represent alternative views. And when it comes to politics, perception often trumps everything else.

If advisers are reading this, then here's my advice. Minimise risk. The minimum risk is to kill the PCEHR, anything else risks killing people.

Why? Bad data.

Anonymous said...

"..AUSTRALIANS would be automatically enrolled for an e-Health record.."
It would then be easier to have: incomplete patient registrations with missing data that is not checked; multiple records created because hospital et. al. records failed to automatically match existing records; many problems with privacy, security and accuracy created when the patient doesn't know about the creation nor access to the record when someone else may have sufficient details to impersonate them during medical care and/or have sufficient details to create a login to the new registration. Removing the patient from the registration process is too risky as demonstrated by people running around with clipboards with insecure patient details and data entry errors.

I once had a nurse miss-type my DOB and then said she couldn't change it because she would have to redo the Asthma tests attached to the record (compared me too baseline 10yrs older than I am). You should never design software assuming all data is right the first time. You have to design systems assuming data may be incorrect and needs to be corrected without the loss of related data.

The development of the PCEHR system should never be considered as finished when expecting a never ending list of bugs and ever expanding functionality requirements.

~~~~ Tim C.

Anonymous said...

“If advisers are reading this, then here's my advice. Minimise risk. The minimum risk is to kill the PCEHR, anything else risks killing people.
Why? Bad data”
The government seems to have already minimized its own risk legally by providing the PCEHR repository, but making others responsible for the quality of the data to be provided. If there is bad data put in there, well then those naughty GPs need to clean up their act! Medications listed to the wrong patient? Well then those silly pharmacists need to clean up their act. MBS/PBS claiming data incorrect then consumers need to go to that other big department (Human Services) and fix their data themselves. Something else wrong with the data or the presentation when it is viewed by the clinician? - then those software vendors need to take the blame. What happened to the proposed ‘consolidated view’ in the PCEHR Concept of Operations? It was abandoned when DOHA realized that they would have to take responsibility for providing a ‘view’ of a patient’s state of health derived from different data definitions and missing items. Now they are proposing an integrated view be created within each clinician’s software – not their responsibility if those others get it wrong or use it incorrectly.
Sorry DOHA and NEHTA, it will never work while there is not a vision of working together and having a joint responsibility to get the data right from the point of care through to the consolidation of data in a central view. It is basic information management, and the PCEHR has failed. Making it opt-out will just make things a lot worse.

Bernard Robertson-Dunn said...

Anon said:

"The government seems to have already minimized its own risk legally by providing the PCEHR repository, but making others responsible for the quality of the data to be provided."

There's legal risk and political risk. Poor politics loses an election.

And do these others fully understand their legal risk?

"It is basic information management, and the PCEHR has failed. Making it opt-out will just make things a lot worse."


Anonymous said...

Not to mention the pure fact that it was never designed in the first place to cope with an opt-out option from a scalability perspective!! 23million records as opposed to the current 1million is a totally different kettle of fish when it comes to data management. It's bound to blow it up if they try to change it I would imagine.