Wednesday, February 09, 2011

Draft : The Person-Controlled Electronic Health Record (PCEHR) - A Uniquely Australian Approach to E-Health.

(For a Health Magazine - Comments Welcome)

In late 2008 Australian Health Ministers endorsed a National E-Health Strategy for Australia which had been developed for the Australian Health Minister’s Advisory Council by Deloittes. At its very simplest this Strategy said Australia needed to continue working on the nation’s e-Health infrastructure (secure clinical messaging, identifiers and terminologies) while investing in improving the quality and penetration of computer systems being used by healthcare providers. With this well underway it was suggested it would then be the time to start to promote health information sharing between the various actors in the health system (hospitals, practitioners, service providers etc.) to facilitate improvements in the quality, safety and efficiency of care. The Strategy also suggested that progress was required in the way E-Health initiatives were planned, managed and governed.

The endorsement of the National Strategy was not associated with any additional budgetary funding, so essentially Government felt this was a good idea but that they were not going to fund implementation. That was apparently left to the Health System.

In June 2009 the National Health and Hospitals Reform Commission (NHHRC) delivered their final report to Government. In this report (see Executive Summary Page 14) they said what was needed was a PCEHR. In their view the introduction “The introduction of a person-controlled electronic health record for each Australian is one of the most important systemic opportunities to improve the quality and safety of health care, reduce waste and inefficiency, and improve continuity and health outcomes for patients. Giving people better access to their own health information through a person-controlled electronic health record is also essential to promoting consumer participation, and supporting self-management and informed decision-making.”

Amusingly some wags have taken to calling the PCEHR the ‘politically correct’ EHR in recognition of the apparently political rather than clinical agenda the proposal seems to be advancing.

The other key recommendation in the E-Health domain the NHHRC but thus:

“We are also recommending that clinicians and health care providers are supported to ‘get out of paper’ and adopt electronic information storage, exchange and decision support software. The Commonwealth Government must set open technical standards which can be met by the vendor industry while ensuring the confidentiality and security of patient information. Most importantly, we urge governments to expedite agreement on a strengthened national leadership structure for implementing a National Action Plan on E-health, with defined actions to be achieved by specified dates.”

The first of these recommendations led to the Commonwealth Health Department announcing a near half billion package in the most recent (2010) Budget with the promise that anyone who wanted a PCEHR would be able to register for it by July 2012 - now just 16 months away. It needs to be noted that the National Action Plan on E-Health has never appeared and that support to have clinicians ‘get out of paper’ has also not been forthcoming.

Do date (as of the time of writing in early February 2011) no significant details on how the PCEHR is to actually work have been released.

From a range of sources the following draft overview of the PCEHR has been assembled.

“The PCEHR system will consist of a range of PCEHR-conformant repositories operated at the national and regional level by a mix of public and private organisations. The PCEHR system capability will transition over time to provide access to richer clinical data stored in a range of PCEHR-conformant repositories.

The PCEHR system will consist of:

• A nationally operated repository, designed to provide a distributed set of secure highly available repositories for PCEHR records on a national basis.

This PCEHR-conformant repository will be used to ensure that there is a minimum level of health information available nationally and to support the sharing of critical health information when there is no other suitable repository available locally. It is likely that the national repository will be used to store health summaries and discharge summaries.

• Other PCEHR-conformant repositories will be accessible over time. These repositories will typically be multi-purpose repositories that may have been designed for other purposes and now include new features to allow it to become conformant with the PCEHR system. Potential candidates include, but are not limited to:

– state, territory and regionally operated SEHRs (e.g. NT SEHR, NSW SEHR);

– Medicare Australia operated repository (e.g. for ACIR and Organ Donor Information);

– privately operated diagnostic services (e.g. repositories operated for/by Pathology and Diagnostic imaging companies);

– other sources including Australian Childhood immunisation register (ACIR), Adverse Drug Event Reporting (ADRAC), implant registers, cancer registries, breast screen registries, etc; and

– commercially operated PHRs (although this is subject to further policy review).”

It seems it is planned that once ‘persons’ have voluntarily registered for their PCEHR that they will be provided with access to some sort of internet portal where they, and those they authorise, can review the information held in the PCEHR system repositories.

There are a very large number of unanswered questions around what is now a project that has had so large an amount of resources dedicated to it. These include:

1. Where are the health summaries and discharge summaries to populate the repositories going to be sourced from, and why would the current information custodians make this information available to Government?

2. Who will be accountable - and presumably paid - for keeping them current even after they have been uploaded to the repositories?

3. Who will be responsible and accountable for errors in the summaries?

4. How will other non-government entities be paid for their time and trouble to populate the proposed repositories?

5. Who will fund the update of all the affected systems, given the lack of financial support to clinicians and their software providers so far?

6. Who will train and support all the new e-Health users?

7. What happens if your GP, or other provider, does not want to share his records with the Government?

8. More important has anyone actually thought about any of this, and why is the public in the dark about just what is happening?

It is vital readers be aware of two facts.

First a system of the sort proposed has never been implemented anywhere in the world without the underpinning of a fully developed provider EHR infrastructure which the Government seems to think will appear out of thin air when it is ready to collect information for its PCEHR system. It does not exist at present.

Second there is no evidence base supporting the value and impact of the PCEHR system as it is presently proposed as far as I can find. The whole proposal also lacks a public benefits case, a public implementation plan and indeed any public review or discussion.

Bluntly I believe the plan for the PCEHR is a major strategic misstep on the part of the Government where essentially the cart (the PCEHR) is being put before the horse (clinician automation and information sharing).

I confidently predict major changes to the proposal before anything sees the light of day in mid 2012, in the unlikely event that anything useful is delivered in that time-frame.

Sadly this whole proposal feels to me like a slow moving train wreck that is going to cost us all a lot of money.




Anonymous said...

With all due respect, when you write that “it’s vital that readers be aware of two FACTS”, the average reader might be confused into thinking that the statements that follow indeed are facts when in reality that are opinions of the writer. Statements like that always make me wonder what the facts really are. So I did some digging around your points.
Your first statement around “a system of the sort proposed has never been implemented anywhere in the world” got me googling. I found some interesting stuff out there, one of which was reference to an EHR project in Israel that is 10 years old, creating a shared record across systems and care settings. One of the striking similarities (according to my understanding) to the Australian scenario is that like in Australia, Israel has a very high degree of use of electronic records in the GP setting, but only a “bunch of clinical systems” running in most hospitals. I also noticed that Health-e-Nation this year will have a keynote speaker from Israel and if I got it right (based on the synopsis on the health-e-Nation website) she will be discussing this very topic. Naysayers will ALLWAYS be able to find reasons to show that the experience in Israel, or in any other location with documented success, is not applicable to Australia – that’s a perfect way to hinder progress. In reality should we be led into analysis paralysis or should we rather embrace the challenge, learn from the experience of others and NOT BE AFRAID of doing something new if we are serving the greater good.
Trying to learn more about this project (the one in Israel – called OFEK) and looking at your second “fact” about the lack of evidence re the value of a PCEHR is what led me to two interesting pieces of research. The first is a peer-reviewed study published in the International Journal of Medical Informatics (September 2010) titled “The impact of an integrated hospital-community medical information system on quality and service utilization in hospital departments” I won’t go into the details but this study lays out multiple areas in which this PCEHR in Israel has provided real value.
The second resource I stumbled across was a site created by (or for?) the European Commission called EHR Impact ( which I got to through my search for more information about this OEFK project only to find an abundance of evidence around results from EHR implementations. I haven’t read it all but I can summarize it like this: The Israel thing is real and while some of the other stuff reported there isn’t really about EHRs in the way we use that term here in Australia it also shows that the Israel case is not the only one! I don’t think there’s a lack of evidence – there’s a lack of visibility to the evidence that’s out there.
I am not an Aussie, merely an expat living here for a few years – but it seems to me like instead of Australians being happy that your government is putting money where its mouth is and making an effort to turn the novel idea into reality, you guys are looking for every way to fail it before it’s even left the station. At the end of the day even if your two “facts” were spot on I would say:
A) Even if it hasn’t been done elsewhere, that doesn’t mean that it can’t be done. We all know enough about IT to say that technically this is doable
B) You don’t need to be a rocket scientist to understand that giving caregivers and IT systems involved in treatment of patients a more complete view of that patient’s medical history is likely to help provide better care
This is not to say that there’s no room for criticism – I too look at the dollars being spent on consultants and on NEHTA and roll my eyes in disbelief, but at the end of the day I would say that given that IT IS DOABLE AND VALUABLE – we’re probably doing injustice to patients with every day that we delay this initiative with counterproductive arguments. Let’s focus on making sure it’s done well than on shooting down an idea that is basically for the greater good of patients and the healthcare system.

Dr David More MB, PhD, FACHI said...

Thanks for your comments.

EHR Implementations are where the value is, and that is exactly what the PCEHR is not about. It is about patient not provider records - and that is my main point. The papers you cite cover these and not the patients using them.

I will have a close look at the references you cite and get back if there is anything that changes my view.

Many thanks for the comments. I too believe provider records are important, nay critical - and they work. It is just the nonsense of creating patient records without the agreement, consent and support of the providers of healthcare I find that really bizarre!


Anonymous said...

Hi David,
It’s me again, thanks for your reply to my earlier comment and to the positive nature in which you appear to have taken my rebuttal.
I think your latest comment is helping us all to understand something important.
You refer to patient records vs. provider records and I am not sure that we all would agree on the definition of what a patient record is vs. what a provider record is (especially as some of us believe that all records belong to the patient). But in the spirit of being productive let me suggest the following:
- That there is well document proof of successful implementations of Shared EHRs that connect disparate systems across care settings. This is doable!
- That most (maybe all – I don’t know) of these successes are in cases in which despite the political difficulty these systems have been designed to primarily serve clinicians (who in turn serve the patients) rather than making it “all about the patient” (e.g. person controlled) and thus preventing the value they deliver from ever getting into the moment of true where provider meets patient.
- That the extreme manifestation of the challenge created by making these systems “all about the patient” is the opt-in model which is suggested in Australia. If it’s important enough to an individual to blind-side the clinician treating them of their history that person should:
o Be responsible/accountable – “if it’s important to you take action to opt-out”
o Pay for his or her healthcare - no reason for the average Aussie to pay for this persons care if the person insist on the system not using tools available to make the care more effective.
- It's unfortunate that the PC (person controller or politically correct) agenda is leading to what would appear to be a suboptimal implementation of a (PC)EHR

I hope this is useful and again, I really believe that the role of industry here is to do the tough part of helping policymakers make this happen and be a success rather than being the stick in the wheels of progress which would be for the benefit of all patients.

Dr David More MB, PhD, FACHI said...


This is not hard. There are the record systems used by Health Professionals to assist in delivering care and providing decision support for them. These are called EMRs or Provider EHRs

The evidence is clear that well designed systems of this sort make a difference to quality and safety.

If you are going to do something evidence based that is what you do.

There are no reputable studies I know of that show that Personal Health Records have a similar impact and actually improve the quality and safety of patient care.

Last time I looked the PHR seemed like a good idea but the evidence was yet to be found.

The PCEHR is a bastard child which is neither fish nor fowl and in the form NEHTA proposes has never even been attempted - let alone be supported by evidence of impact.

Shared EHRs are very complex to deliver beyond the simplest amount of information being shared. NEHTA's proposals are over complex and I believe will not work. The fate of the UK SCR shows what might happen if you over reach.


Anonymous said...

I think the heart of the issue here is what does "Person Controlled" mean?

There is an extreme interpretation of this: that the individual who is the subject of the record has absolute and complete control over exactly what goes into the record and which individuals should be able to see it.

This is clearly impractical, no matter what consumer advocates may think, so the notion of "Person Controlled" needs to be defined. If this is not clear then we are simply in no position to define the technical requirements.

Anonymous said...

It's well worth looking at this article on the usage (or lack thereof) of the UK Patient Summary Care Record:-

My understanding is that, thus far, the story in Denmark is much the same.

Maybe the concept of the Patient Centric/Controlled EHR is a flawed one...but I would submit that we won't really know until the correct foundations are in place to create an EHR that consists of information from more than one, or two, vendors' systems.

Dr David More MB, PhD, FACHI said...

I agree, but your interpretation is what NEHTA is talking about. Go and read the Government press releases and it is all about total personal control.

The issue as I see is it is to distinguish between the patient controlled shared record (where the patient records their material and stores other material from say labs etc) and the provider EMR or EHR.

Clinicians need to share information as they do now - and maybe even better - to deliver care.

The tangle is all really in the terminology but under this there is a real issue about what we should support and what, stupidly, the Government seems to be on about.

My view - its politically driven rubbish!


Anonymous said...

These last comments have been valuable in getting to the essence of things.
I think we all agree that a Shared EHR is important and essential for Australia. We also agree that the mutation of it into a PCEHR where the patient is at the epicentre of control rather than of treatment is a negative.
My only concern is that we throw the baby out with the bath water, our criticism needs to be razor sharp to help us get DOHA/NEHTA to a realistic place, balancing the public opinion (PC) needs with realities around where the benefits and technical possibly lay.

Dr David More MB, PhD, FACHI said...

Its a matter of priority and likelihood of success. Sort out provider support, provider communications and then move to a basic shared record, in that order, is what I think is needed.

Patient access to their information is fine - but not control of sensible clinical information sharing! What is sensible still needs some definition.

In summary we need clinician records and decision support - done properly - before the SCR and definitely before the PCEHR.


Anonymous said...

The notion of an individual having access to their record is a good one. After all, the subject of the record is often in a better position to interpret it than the clinicians they are working with, as they are able to combine this information with the sensory information provided by inhabiting their bodies.

Part of the clinician's job should be to assist the individual in interpreting their record (along with the subject's sensations and both parties' observations) and make recommendations for action based on experience with similar cases, etc. etc.

This paradigm for health does not seem to fit well with the expectations of many clinicians, and I think that this is behind some of the argument about personally controlled versus clinician focused.

Dr David More MB, PhD, FACHI said...

I don't see an argument. If you want to act in an evidence based way you would adopt the sequence I suggest. Just doing something because it is politically or emotionally satisfying is NOT the way to proceed in my view.

Other are more than welcome to hold differing views, or better still provide some evidence to support their assertions.

I have to say I liken this conceptually to the difference between professional and consumer software tools. I don't need the $2,000 Adobe Photoshop to tart up holiday snaps and clinical professionals need different software tools to do their job than the patient. The old adage of a 'little knowledge being a dangerous thing' applies I believe.


Anonymous said...

Where is the evidence that the approach you are recommending is better for the current and future needs of health care than a system where everyone (including the patient) shares data via (regional or national) repositories while still using specialised system for their specific requirements?

Dr David More MB, PhD, FACHI said...

I suggest you have a look at the National E-Health Strategy which provides a good summary of the evidence.

Assuming we are going to have repositories all over the place seems to me to be 'courageous' for a large range of technical reasons (synchronisation, data currency etc).

See blog later today on patient access to their shared information.


Mr. HIT said...

It's pretty clear. There is evidence of the value(and feasibility) of a shared EHR - even if EMR implementation is incomplete.
A good EHR can and should also provide access and tools to the patient. But one needs to build these things step-wise, start with the foundation of the EHR, connect enough entities and eventually provide access and tools for patient engagement. not the other way around.
As Anonymous reader wrote we just need to ensure we don't wash the baby out with the water, if the government want to build an EHR we need to help them do it right, not discourage them from doing it at all.

Dr David More MB, PhD, FACHI said...

"It's pretty clear. There is evidence of the value(and feasibility) of a shared EHR - even if EMR implementation is incomplete."

Reference please.

I don't believe that is true - but am happy to be corrected!

None in OZ or the UK have actually done well.


Mr. HIT said...

The word dosen't start and end in the UK or OZ. The UK (typically) took a "we build empires - so we'll rebuild the NHS's IT in one big bang" approach. No surprise that didn't work - not much to learn from it either (although Vitoria could have learnt a thing or two a few years ago). It appears that one of the Anonymous replies earlier cited some solid information/references.

Dr David More MB, PhD, FACHI said...

Have a close look at the references. Not actually what the PCEHR is planned to be as best I can tell.


Mr. HIT said...

I did look at them. They are of Shared EHRs (looks like they don't have the PC component) and that was my point exactly - an EHR is a good and proven idea which can deliver value. Moving from their to the PCEHR should be a well planned step taken only once an EHR has been established. but let's not trash the whole idea of the PCEHR just because it ultimately aims to be PCEHR.

Dr David More MB, PhD, FACHI said...

My point exactly. EHR and even provider shared EHRs probably good. PCEHR probably nonsense and no evidence it is useful. See most recent blog!

I am a strong believer in electronic support of clinicians - in case you had not noticed!


Mr. HIT said...

Had noticed :-)
and preciely for that reason I think it's important not to kill the Shared EHR component of the PCEHR (which to me is the essence of it). you are right that we need to make sure that the Shared EHR doesn't become victimized by people with dreams about patient control with no factual basis.

Dr David More MB, PhD, FACHI said...

Shared EHR needs to be done carefully and slowly. And only after clinician computing support really is fixed. PCEHR priorities are wrong way round!

Pretty simple really!


Anonymous said...

I've read this thread with interest.

My understanding is that the Israel platform cited works very well. It does involve an "edge server" placed at every single interface point to the EHR architecture, and that server integrates directly with the EMR system's database. The provider themselves has no real control over how that works, and the patient certainly doesn't. Not sure how acceptable that would be in our country - especially with all the politics around this.