I had an e-mail today from the author pointing out a new article on the PCEHR.
Alarm bells ringing over botched introduction of electronic health records
The Federal Government is introducing a new system for electronically managing health information — and given its botched implementation so far failure is almost guaranteed.
Called the PCEHR (personally controlled electronic health record) the idea is to give patients access to an electronic summary of their health records that can be shared among healthcare providers who will also update the record when they have contact with the patient.
The PCEHR will include information about the patient’s medications, test results, medical history and any other health-related information.
Having a PCEHR will be optional. Once a patient has decided to have one (and provided it is supported by the doctors and health services the patient uses) he or she can apply for a user name and password through Medicare or another approved agency.
The PCEHR will be web-based, so patients will be able to log in and view their entire PCEHR record. The patient will also be able to control who gets to access her or his information. Providers who have permission will access the information using their own username and password, perhaps in combination with a smart card or special USB key.
A patient may also be allowed to hide parts of her record and it is this feature amongst many that has started the alarm bells ringing among doctors facing potential liability claims after basing decisions on incomplete information.
The purported benefits of PCEHR
Sharing your health records between providers, the theory goes, increases your mobility and improves their ability to treat you without having to get the information from potentially multiple sources.
This is especially useful if you are not in a position to disclose that information yourself, for instance, when you arrive at an emergency department.
In principle, the idea is sound, but other implementations of a shared summary records around the world have not been very successful. The United Kingdom’s recent experience has shown little uptake by either consumers or health professionals.
The fact that PCEHR is optional, both for the suppliers of the information and the patients themselves means that relying on its use will be almost impossible.
Even if a patient has a PCEHR, it will be very difficult to say how complete and how up-to-date the information is. This is made even worse by the fact that a patient can hide parts of her record.
At the same time, there is little research evidence to show that shared summary records provide any significant benefit in patient health outcomes.
In the face of all this, it is fair to ask why Australia is trying to implement the PCEHR in a extremely ambitious timeframe, at a cost of $470 million dollars when budgets are tight and cuts are being made across the board.
Why PCEHR?
PCEHR was another of Kevin Rudd’s bold plans that arose out of the National Health and Hospitals Reform Commission (NHHRC) Report in 2010, but it’s built on a fairly lengthy history of government-funded eHealth programs.
Like other things cherry-picked out of this report, the commission had recommended PCEHR as part of a comprehensive action plan on eHealth.
Lots more here:
The author is David Glance. His bio follows:
“Associate Professor David Glance is director of the UWA Centre for Software Practice, a UWA research and development centre. Originally a physiologist working in the area of vascular control mechanisms in pregnancy, Professor Glance subsequently worked in the software industry for over 20 years before spending the last 10 years at UWA. The UWA CSP has developed the eHealth platform MMEx which has been used to provide electronic patient management in WA and other parts of Australia. Professor Glance's research interests are in health informatics, public health and software engineering.”
He is the third Professor who has suggested to me this is not quite the fabulous idea the Minister thinks it is.
Elsewhere there have been three main additional sets of issues raised.
First technical feasibility is under something of a cloud.
See here:
Tech metrics missing from e-health records blueprint
NBN expected to 'facilitate new opportunities'.
The National E-health Transition Authority (NEHTA) has released a 125-page blueprint for Australia's $467 million personally controlled e-health records system (PCEHR), but was unable to provide further detail on the technology required to deliver the service.
The draft report (pdf) made no mention of response times, latency or any other key technology details behind the PCEHR -- intended as a centralised system for collecting and sharing Australia's healthcare data.
While viewing rates, the number of records added, and consumer surveys were highlighted as 'key performance indicators', there was no explicit reference to critical issues such as the speed of access to data repositories.
"The existing Internet capability in Australia is able to support most current eHealth applications," NEHTA wrote.
"Once implemented, the National Broadband Network will extend broadband support and facilitate new opportunities in eHealth."
Lots more here:
http://www.itnews.com.au/News/254197,tech-metrics-missing-from-e-health-records-blueprint.aspx
Of course the NBN is a decade long project and just what happens in the meantime who knows?
Secondly the recognition that there are some huge and at present un-recognised costs have also emerged.
Doctors seek payment for e-health records
- Sue Dunlevy
- From: The Australian
- April 13, 2011
DOCTORS will have to be paid to set up personally controlled patient e-health records or the government's $466 million e-health system will not get off the ground, two doctors groups have warned.
The Australian Medical Association and the Royal Australian College of General Practitioners said yesterday that creating the records would take time and doctors would have to be paid to do it.
More here:
Thirdly there is an increasing recognition that the ‘opt-in’ approach to the consent model is going to mean it will be a very long time before user numbers really grow.
Softly softly skewers e-health savings
Tuesday, 12 April 2011 09:40
By insisting on a softly softly approach to electronic health records, the Government has missed out on an opportunity to revolutionise health care in Australia, instead paving the way for a two track national healthcare system for the foreseeable future.
The release this morning of the 135 page draft concept of operations document regarding the use of personally controlled electronic health records (PCEHR), makes clear that individual Australians will be able to choose whether to sign up for the programme, determine who can access the information stored in those records, and withdraw from the system whenever they want.
While civil libertarians may applaud the approach, it will lead to significant problems for healthcare providers which will have to respond to the whim of individual patients. Even if a patient opts into the system, if they later opt out, it will be up to healthcare providers to then scramble to assemble health records for that individual.
Lots more here:
Looks like there are a good few others who have seen through this nonsense!
David.
David -
ReplyDeleteIt's been a while since I posted here, and there has been a lot to think about.
I think that there's a strong argument for both following and not following what's gone elsewhere. You cite Scotland and Wales as examples of working EHR - and this is true. The specific implementations work well for Scotland and Wales although they are not the same solutions as one another.
What I'm trying to say is that there are "horses for courses" in EHR, and what has worked well in one jurisdiction will not work well in another - much the same as the deviations in clinical practice, which are just as diverse as the deviations in presenting morbidities.
It's not unreasonable to see that if I have significant differences in the presenting populations between my two outpatient clinics which are 100km apart, and my practice of medicine changes slightly because of it - then the "system" which supports that needs to be different too. I'm sure that practicing medicine in Adelaide, SA is not the same as Edinburgh, UK.
That said, there are distinct similarities (!), and I find it inconceivable to think that "we" in Australia would reject solutions and lessons learnt from elsewhere in the world simply because they're "not Australian". (I'm minded of the comments you reported from the Health Minister a few days ago).
One area that I see there being real issues with what we are doing down here is the belief that we should (and are able) to "model" the entire practice of (the Art) of Medicine. NEHTA have published a range of clinical information models - of which (from my understanding of them) around 70% are directly relevant to my personal practice, and having coached colleagues through them I think this is a fair appraisal of the degree of relevancy. This was attempted in the UK as part of the CfH program. Their limited success should be a marker for us - or are we arrogant enough to think that we can succeed when they didn't?
I think what we need is a flexible solution which integrates behind the scenes to my existing EMR system(s). I think that is what NEHTA is trying to say with the "ConOps" (now that I've got a copy!). If a patient is coming to me seeking care, then I can only provide them the best care that the information I have about them will allow. The more information, the better. I can (and do) use my clinical judgement to determine where some previous notes were not as accurate as they could have been. In some cases I will contact the author just to be sure. In others, I make a clinical judgement call. The same should be true with electronic health records. If the data is structured, great, it makes the technical wiring job easier. If it isn't structured, then it is what it is, display it to me in the best way you can.
[continued]
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ReplyDeleteThere's been a state wide system in SA for a long time - shouldn't this be something that we are proud of in e-Health Australia and potentially look to build upon? Sure, its not perfect, it is a platform to build on though - as opposed to seemingly needing to have a new solution "from scratch".
While I'm on my soapbox (and well done for reading this far!) I would like to touch upon the security and privacy controls in the "ConOps". When a patient comes to see me, they trust me to provide them the best possible care. To do this, I need the best possible information. They don't know what is clinically relevant - I do. They might have "an idea", but they don't KNOW. If I believe that they are withholding information from me then I have a right to refuse to treat them, and I have. I agree that it is the patient's information, but providing them care is a mutual-trust agreement. To my mind, the requirements here are really very simple (yes, the devil is in the detail, but the majority of cases will conform).
- Complete patient information should be available to those healthcare professionals who provide the patient care
- Information should be constrained by the role that the healthcare professional has in providing that care (NB: This is the role in relation to the care being provided to the patient, not the role that the health care professional has within their organisation... of which there may be several that they are members of!)
- A patient can state within the PCEHR those healthcare professionals (or groups of healthcare professionals) that they are provided care by, and all others are excluded access
- A healthcare professional can declare that they have a relationship with a patient and need to access their information (and all of these declarations are reviewed)
- A patient can select certain information that they feel is especially sensitive, and access to that information will first alert the healthcare professional that the patient has specific concerns so the patient can verbally consent (and all of these declarations are reviewed)
There you go - five simple rules which will cover 99% of the events which occur day in, day out in healthcare in our country.
When I read the "ConOps" around Security and Privacy it simply makes my head spin. A few points. The idea that a patient will carry around a security code which they will give to clinicians they trust is simply stupid. I see patients when they are at their most vulnerable, to expect them to routinely remember a secret code which they don't use that often is laughable. To expect me as a clinician to go through an opt-in process with patients to get access to their records is laughable to. They expect me to treat them, not talk to them about a great new system.
So, I've got a few questions.
1) Has anyone done an analysis of the "ConOps" and determined whether patient participation is reasonable under the duress conditions that most patients feel when they are receiving care? This goes beyond basic clinical safety and into the general welfare and respect of the individual.
2) Am I allowed to devolve the opt-in process to administrative staff? Will the government fund the additional staff required?
3) Can a patient opt-out of all electronic health records? Even those which I hold locally right now? Does this mean I need to keep (potentially) three sets of records for a patient (who being capricious could decide to "change" at any moment)... paper, local electronic and PCEHR?
4) When will I be consulted on the PCEHR?
5) Do we have yet a definition of WHAT the PCEHR is trying to achieve, rather than a HOW?
It's late and I apologise for typographic errors above.
All for now.
There was movement at the station, for the word had passed around
ReplyDeleteThat the PCEHR had been released,
And had joined the wild tenders -- it was worth a half a billion!
So all the cracks had gathered to the fray.
All the tried and noted heroes from the vendors near and far
Had mustered to the tender box in time,
For the vendors love hard riding where the wild systems are,
And the bloggers snuff the battle with delight.
yeah sure doctors 'need' all information to 'treat' patients... (absolutley NOT true) so what with wrong with running through some questions, who's to say the doctor before you asked all the correct questions, and if I did block some information out then I was probably willing to tell another doctor so if I trust you then sure I will share that information with you, if not then obviously you are not a doctor I should be seeing. your five rules are lame and if they did excist I would avoid telling you anything that I would not want freely avalible to anyone since I would know that anyone would and could access it. if you think the current way is bad think again. I think its stupid that health places have such control over OUR medical records. How do I know you are trust worthy, your office workers are trust worthy, the computer programer is trust worthy. sometimes you doctors are so busy justifying your 'need' for knowledge that you forget that it is a privelage for me to share information with you, not your right to know! (yes it MAY inprove my health outcomes but at what cost, abuse, powerlessness, exposure, blackmail, higher insurance premiums, (all very real possibilities) all risk jepodising my health!)
ReplyDelete