Sunday, June 26, 2016

The AMA Clearly Has A Different Vision For The My Health Record Than The Government. More Discussion Is Needed!

The AMA came out a week or so ago regarding the My Health Record. Here is the introduction and conclusions (the rest is on their web site at the link below):

Shared Electronic Medical Records - Revised 2016

AMA Position Statement on Shared Electronic Medical Records - Revised 2006. This Position Statement is part of the eHealth suite of position statements and should be read in conjunction with the following Position Statements: Electronic Prescription Transfer Systems (2009), Technology-based patient consultations (2013), and Medical practitioner responsibilities with electronic communication of clinical information (2013).
16 Jun 2016
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Conclusion
The AMA looks forward to shared EMRs operating universally with optimum ease of use and seamless integration across health care providers.  At this point there will be a universal, automatic and effective incentive for all clinicians to participate in shared EMRs.
The AMA supports a shared electronic medical record that:
  • has universal coverage for the eligible population;
  • contains reliable and relevant core clinical information  about individuals that is not subject to access controls;
  • aligns with clinical workflows and integrates with existing medical practice software;
  • recognises and rewards additional activity required by clinicians providing information to the EMR
  • has appropriate security measures in place to protect patient privacy, consistent with privacy of patient information in other forms;
  • is governed by a single national entity which actively engages with medical and other stakeholders;
  • is supported for implementation and operation across medical and other healthcare providers, starting with support and incentives for use by medical specialists; and  
  • is fully funded by governments and supported by appropriate incentives, education and training.
This Position Statement is part of the eHealth suite of position statements and should be read in conjunction with the following Position Statements:
The AMA Medical Practice Committee has principal carriage of the Position Statement on Shared Electronic Health Records.
Here is the link to the full document:
There is also a summary press release:

Access To Core Information Critical To e-Health Record Success

16 Jun 2016
Doctors and other health workers need to have access to core clinical information in electronic medical records if the Federal Government’s My Health Record system is to deliver an improvement in patient care, the AMA has said.
Releasing the AMA’s updated Position Statement, Shared Electronic Medical Records 2016, today, AMA President Dr Michael Gannon said that giving patients the ability to block or modify access to critical information such as medications, allergies, discharge summaries, diagnostic test results, blood pressure and advance care plans compromised the clinical usefulness of shared electronic medical records loaded on the My Health Record system.
“Doctors treating a patient need to be confident that they have access to all relevant information,” Dr Gannon said. “Shared electronic medical records have the potential to deliver huge benefits by giving health workers ready access to critical patient information when it is needed, reducing the chances of adverse or unwarranted treatments and improving the coordination of care.
“But, if patients are able to control access to core clinical information in their electronic medical record, doctors cannot rely on it.
“Giving patients such control, as the My Health Record system does, is a big handicap to the clinical usefulness of shared electronic medical records.”
The Federal Government launched My Health Record earlier this year to replace Labor’s troubled Personally Controlled Electronic Health Record (PCEHR) system, and trials of its opt-out arrangements are due to commence in mid-July.
But the system, like the PCEHR, gives patients the power to control what goes on the health record, and who can view it.
The AMA said giving patients such control meant the My Health Record would never realise the full benefits of a national electronic health record system.
“All shared electronic health records must include core clinical information that is not subject to patient controls,” the AMA Position Statement said. “Certainty that shared electronic health records contain predictable core clinical information which is not affected, conditioned or qualified by the application of access controls, is critical to the achievement of the legislated objectives of the My Health Record.”
Like its predecessor, the My Health Record system has generated little interest among patients or doctors – in April just 798 health providers had uploaded a shared health summary to the system.
An AMA survey of 658 medical practices, undertaken last month, found GPs were reluctant to take part because of lack of confidence in the reliability of information it contained, combined with little patient demand and an absence of support for practices undertaking the task of creating shared health summaries.
Dr Gannon said the AMA encouraged individuals to take responsibility for their health and strongly supported the idea of a national shared health summary system, but it had to be the right one – one that supports clinical care.
“All health care workers involved in providing clinical care to a patient should have access to core clinical information,” he said. “Where specific information, other than core clinical information, is not made generally available, this should be made clear to treating doctors with a flag on the medical record.”
The AMA added that in ‘break glass’ emergency situations, implied consent must sometimes be assumed to allow access to the full medical record.
The Association said the system should also provide protections for doctors who acted in good faith but missed or were unable to locate critical data “because it is buried in a sea of electronic documents”.
Dr Gannon said shared electronic medical records should not be treated as a replacement for a patient’s medical record, and should not be treated as the single and definitive source of ‘truth’ regarding clinical information about a patient.
But he said it was an extra source of information, accessible at the point of care, that may otherwise have not been available.
The AMA Position Statement on Shared Electronic Medical Records 2016 can be found here https://ama.com.au/position-statement/shared-electronic-medical-records-revised-2016
Here is the link:
There was coverage on all this here:

Doctors want patient control over e-health records revoked

AMA demands minimum patient data set that can’t be altered.

By Paris Cowan
Jun 16 2016 3:59PM
The Australian Medical Association has strengthened its calls for the reversal of full patient control over My Health Record data so clinicians can have more confidence in the under-patronised system.
AMA president Dr Michael Gannon said the ability of patients to control what is entered into their personal health record and who can access it is contributing to a lack of faith in the MyHR system amongst doctors, who have been sluggish adopting it as a result.
“If patients are able to control access to core clinical information in their electronic medical record, doctors cannot rely on it,” Gannon said, unveiling the AMA’s revised policy towards electronic health records today.
The medical lobby said as of April, only 798 Australian health providers had uploaded a shared health summary into the national My Health Record system since its inception.
The Department of Health confirmed earlier this year that just 300 medical practices nationally - out of more than 8500 - were regularly populating the system.
More here:
The bottom line of all this is that, as far as the AMA is concerned, there is a great deal of work to be done. The new Aust. Digital Health Authority now knows the issues the AMA believes need to be addressed!
Stand back and light the blue touch paper!
David.

28 comments:

Dr Ian Colclough said...

It is most reassuring that the AMA has finally documented its strong support for a shared EMR (electronic medical record).

Pages 1,2 and 3 of the AMAs position paper clearly present an excellent overview of the most important issues which should never be lost sight of if Australia is to ultimately realise the successful development and deployment of a shared EMR (Electronic Medical Record).

It is clear that significant differences exist between the My Health Record system and the AMA's views on what is required to achieve successful development and deployment of a shared EMR. These differences must be resolved urgently.

Dr David More MB PhD FACHI said...

Ian,

You are dreaming.. they (the AMA) don't want it (the Shared Record) and without major change (which the Government won't do) they are out of it!

Stop spinning and grasp the facts - the AMA thinks the myHR is rubbish and you know it!

Just why do you write such evidence-free nonsense?

David.

Dr Ian Colclough said...

Thank you David for your feedback; perhaps I have been na├»ve. If as you said “the AMA thinks the myHR is rubbish” why have they expended the time and effort preparing a comprehensive position statement advocating for the introduction of a national shared EMR?

Perhaps the answer lies in your observation that “The new Aust. Digital Health Authority now knows the issues the AMA believes need to be addressed!” As you say “there is a great deal of work to be done” – on that we can agree.

Dr David More MB PhD FACHI said...

Ian, the AMA are advocating a Shared EHR for doctors to use and be able to trust. The also don't want the consumer to be able to fiddle with or control the data. That is hardly what the myHR is....

Basically this is an ambit claim to get rid of patient control etc. The ADHA will be between the rock and hard place!

David.

Dr Ian Colclough said...

As you say David “the AMA are advocating a Shared EHR for doctors to use and be able to trust.” I consider ‘trust’ is fundamental to the credibility of a Shared EHR and I hope you agree.

You also said the AMA “does not want the consumer to be able to fiddle with or control the data”, and that “this is an ambit claim to get rid of patient control”.

I disagree with you that this is an ambit claim by the AMA. It’s certainly a difficult issue. Even so it can be resolved with goodwill and a genuine preparedness by both sides to understand the subtleties of what needs to be done to resolve this thorny problem.

In this day and age it is accepted that patient’s are legally entitled to ‘access’ their clinical information. A Shared EHR between service providers should not preclude them from doing so.

The fundamental issue here lies in the ‘controls setup’. What do we know about the ‘controls setup’ in the government’s MHR?

The ‘controls setup’ must be comprehensive, protected and parameter driven. If these criteria are, or can be, met my reading of the AMA’s position paper is that the AMA will be satisfied, doctors and other uses will be satisfied, the patient will be satisfied and hopefully the Department will be satisfied. On the other hand, if these criteria cannot be met, or have not been adequately architected into the existing MHR system, then the system effectively will remain unused by doctors.

It is not acceptable to suggest neither side will agree with each other and that therefore nothing can be done. It is facile to suggest that “basically this is an ambit claim (by the AMA) to get rid of patient control”. There is a place for patient control and there is a place for doctor control. While the issue is politically and organisationally complex it can, and must, be resolved. It’s not that hard.

Dr David More MB PhD FACHI said...

"In this day and age it is accepted that patient’s are legally entitled to ‘access’ their clinical information. A Shared EHR between service providers should not preclude them from doing so."

Sure the AMA just doesn't want information in the Shared Record - if there is to be one - changed, hidden etc. etc.

Having patients see what is in the record is a great idea.

BUT - just what do we need a national duplicated, secondary system for? Why not just give those patients who want it access to a web version of the GPs record? No risk of many of the issues around creating a pile of .pdfs etc.

A billion dollar or two National Shared Record is unnecessary and a waste of money!

David.

Bernard Robertson-Dunn said...

David asked: "just what do we need a national duplicated, secondary system for?"

Great question.

IMHO there are two options:

1. A single system that supports all participants for all purposes and contains all data, that must manage multiple and overlapping security, privacy and functional controls

2. A set of discrete systems that support groups of participants for specific purposes and only contain relevant data, but which can inter-operate and interchange data as required.

MyHR is neither, furthermore, as David points out it is a secondary, duplicated system. In other words it is worse/less useful than either.

Dr Ian Colclough said...

David, we agree that “Having patients see what is in the record is a great idea.”

One option, as you suggest, is to give them “access to a web version of the GPs record”. With this approach I presume you envisage each clinical desktop vendor developing their own cloud-based system for use by their general practice clients.

If the patient has more than one GP presumably the patient may have more than one record; if different vendors service each GP!

Presumably you are proposing that imaging and pathology results held in more than one cloud-based GP record, provided by different clinical desktop software vendors, will in some way be consolidated into ?one? record. Not to do so surely perpetuates the issue of silos of patient information leading to continuing fragmentation of the healthcare system.

I agree wholeheartedly that creating a “pile of PDF’s” to go into any record anywhere for the purpose of clinical care is a futile exercise; and that should not be the basis for building a shared EHR.

Anonymous said...

Re June 28, 2016 2:33 PM “it is a secondary, duplicated system”.

Option 1 sounds attractive – “A single system that supports all participants for all purposes and contains all data, that must manage multiple and overlapping security, privacy and functional controls”.

In fact Option 1 sounds very much like the national Shared EHR which was originally proposed by the National Health Reform Commission some years ago. In fact it also sounds just like what the AMA has outlined in its Position Statement.

The logic that follows here is that redesigning My Health Record to achieve this goal would be a winning solution in every way and it would overcome your criticism / argument that “MyHR is … a secondary, duplicated system”

Bernard Robertson-Dunn said...

The only problems are:

1. It is very difficult, if not impossible to build such a system - one that satisfies the needs of everyone.

2. if such a system were implemented, it would replace all other practitioner support systems. This is unlikely to be acceptable to many stakeholders and be incredibly costly.

3. It would be a homogeneous, monolithic system, difficult to change and enhance.

4. It would introduce many problems and risks in the areas of reliability, availability, resilience, security and privacy.

5. The government has never built and properly maintained such a system.

H. L. Mencken said "For every complex problem there is an answer that is clear, simple, and wrong." This is one of those answers.

Anonymous said...

"In fact Option 1 sounds very much like the national Shared EHR which was originally proposed by the National Health Reform Commission some years ago.

There was never a proposal for a central repository of common clinical documents prior to the PCEHR - and which was a radical deviation from the 2 eHealth business cases approved by COAG.

Until that time the plan always was for a process of 'connecting up' clinical repositories so that data could be exchanged as needed. The idea was to quickly get moving exchanging crucial information such as discharge letters, path results etc, and with time to develop ways for GPs (for example) to access hospital records of their patients directly (with appropriate consent etc). The plan was based on the essentially distributed nature of the internet and the realisation that centralisation was expensive and unlikely to be either effective or risk free, nor was it where technology was going.

You have to remember that the PCEHR and its centralisation strategy came from within DOHA (abetted by paid consultancy houses) and against expert advice. The reasons driving that decision are lost to any history I know.

john scott said...

Colleagues, the challenges we face going forward will not be resolved through the lens of centralized electronic health records. We have spent over $1 billion and we are as far away from having something of use as we were when we first embarked upon this journey over a decade ago.

If we are to make progress our focus and indeed narrative needs to shift to the physical human sphere of health and the information exchanges that are necessary to support care delivery that is safe, high quality and efficient. And in this context, the articulation of the contribution of ICT, including data stores.

The purposeful separation of the human sphere from the electronic sphere provides the space wherein we can realistically workout the norms informing and guiding the capture, storage and exchange of health information. These NORMS will necessarily be anchored in the Duty of Care--a concept which is foreign to all but a few sectors of the economy.

Further, it is only at the level of human communications that we can begin to ensure semantic as well as syntactic interoperability.

We do need electronic data stores. A strategic perspective on the human communications of healthcare would facilitate resolution of the conditions under which we create shared data stores. For example, continuity of care for patients with chronic conditions is not easily resolved by the organisation-centric view, such as we find in our major hospitals. Much of the care provided to chronic condition patients takes place in an ambulatory setting and involves a variety of service providers. Information capture, storage and exchange is resolved more easily through appropriate contextualization.




Andrew McIntyre said...

Reliable exchange of health information between health care providers is always what we have needed. We have exchange happening but the reliability and quality of the information being exchanged is not as good as it could be because there has been a failure of governance in this area. Despite this it is happened outside the sphere of influence of the people with a history of having spent billions of dollars on centralized repositories of human readable documents. This does little to advance the quality and safety as there is no value add from decision support.

We needed, and continue to need government to ensure that what is exchanged is of high quality, but not try and mandate solutions. People with little technical knowledge or understanding mandating their own pet solutions is how we got to the current mess. Their would be a huge payback to improving the quality and reliability of the existing solutions ie HL7V2, but no doubt they will try and come up with something new and unproven despite the fact that 99% of electronic exchange is in HL7V2 today and most of it will continue to be in that format for 10-20 years.

If they practiced governance of what the industry uses, rather than trying to come up with solutions we would be a lot further ahead. I think its clear that governments inventing working solutions is a very unlikely event.

Dr Ian Colclough said...

Bernard’s points 1, 2, 3, 4, 5 are compelling.

Bernard Robertson-Dunn said...

We should not lose sight of the main aim in health care - better decision making that leads to better health.

Data is only a means to that end, it is not an end in itself.

IMHO, that's the fundamental problem with the PCeHR/MyHR and most other health record systems.

There has been little or no attempt to support health care decision making. If there had, the data in, and available through, the MyHR would be much better managed.

AFAIK, at the moment a health professional has to wade through individual documents, summaries, test results, etc looking for information that might be relevant to the case they are working on. There may be more data in the system, but hidden, or not entered to the system that is critical to that case - the carer wouldn't know - hence there isn't even trust.

Compared with the billions spent on health record systems, little or nothing has been invested in the decision making side of health care - the side that really matters.

IMHO, giving patients access to their health data sounds like a wonderful idea and makes politicians all warm inside. Unfortunately patients are ill equipped to make use of most of their data, may misunderstand it and react inappropriately.

A central database of health summaries might be a good idea - for some people.

Put the health professional at the centre of a health information ecosystem; work out how to help them make better decisions for patients, then identify what information is needed and how best to get it and manage it.

Then you might get some value out of the data.

Bernard Robertson-Dunn said...

Who does this remind you of?
http://dilbert.com/strip/2016-06-28

Anonymous said...

Decision support systems are all well and good; nice to have when someone has put them together and made them easy to use. BUT first please, to help me practice as a doctor and fix (treat)the patient just give me the facts - in a logical, ordered, easy to access format.

Just give me the facts; the cumulative results of recent (and past if required)pathology, chemistry, microbiology and similar investigations, the current (and past if required) imaging reports and access to the images, the current list of medicines (and past medicines prescribed and discontinued), and so on. And give them to me in a way which I can electronically share collaboratively with my patient's other health service providers and with my patient. And after you've done that, and I and my colleagues are satisfied with what you have delivered, then by all means focus your energies and resources on developing your decision support systems and come back when you've done so.

Anonymous said...

We need to have a definition of what is meant by a Decision Support System.

I think pathology and radiology reporting systems are good examples of a DSS. Some might see a list of prescribed medicines in a medicines record is a DSS. Others may disagree.

Bernard Robertson-Dunn said...

If you read what I wrote very carefully, you'll notice that I didn't say we needed decision support systems. What I said was, we need to support decision making.

What anonymous 1:32pm described is a good start, but it's important to recognise that it's access to data that matters, not how and where it's stored. There are some good ways of doing that and some very bad.

It is likely that multiple and different decision support systems will be developed for use by specific practitioners. These are the systems that will deliver real value, much mote than the data stores. It's also where competition, flexibility, innovation and other good things can happen.

To summarise. The drivers need to be:

Health care professionals -> decision making -> decision making support -> data -> IT systems.

Unfortunately, IMHO, they started at the wrong end.

Andrew McIntyre said...

We need data that could be used for decision support, rather than the decision support at the same time. I was one of the trial users for the early HL7v2 in Australia and we have >15 yrs of lab data on existing patients that is usable for decision support, it doesn't mean its being used yet. In that 15 years radiology reports have not progressed and clinical reports have not progressed. Getting good data is not very sexy, which is why castles in the air are more attractive. However getting good data is the foundation of good decision support, which is where the future savings are supposed to come from. I guess "Watson" might just read the pdfs and give us good decision support, but thats a gamble.

Anonymous said...

It is very clear from the many intelligent illuminating comments above that NEHTA and the Department have not understood the problem they were trying to solve. Moreover they got led astray by chasing the mythical PCEHR as advised by ill informed consultants.

Did they listen to their medical experts like Mukesh Haikerwal and others - clearly not - they all resigned in frustration because the general consensus among the system developers at NEHTA and in the Department was that the doctors didn't understand.

Like most massive complex IT projects there is a stage in their life cycle where they reach a point of no-return. My Health Record has arrived at that point. ePIP incentives designed to force uptake by doctors is a last resort; use it or lose your ePIP dollars.

Anonymous said...

Anonymous June 30, 2016 12:41 PM

You're dreamin'!

Herr Haikerwal was the most vocal advocate of the PCEHR among the handsomely paid shills NEHTA funded in their court, and any protests or contrarian views to their PCEHR evangelistic stance met with pejorative commentary of "green-eyed" envy, jealous of their more enlightened and "successful" PCEHR ways...

If they believed in it soooo much, why they never funded it with their own pilfered capital to garner all the market returns is beyond me, but they're happy to socialise the unlimited losses with reckless abandon to all our detriment!

Shame, Shame, Shame.

Forever "Rest in Misery" NEHTA!

Anonymous said...

The reason we need Decision Support now (not later) is that we have had 15 years of "give us a few years to get the record right" and then you can have DSS. But the record is never 'right' so we kick the DSS can further up the road.

Yet, all the evidence shows that DSS is where the benefits and savings are. One only needs to read the literature on overdiagnosis, on prescription error etc, to realise that DSS solve a present day problem that matters to patients.

So please, no more kicking the can up the road. We've already waited too long.

Anonymous said...

What precisely July 01, 2016 11:27 AM do you mean by Decision Support?

I have always thought that underlying Decision Support is the clinical data that is deposited in the clinical record; like pathology results.

Can you define it please? Can you give us 2 or 3 examples?

Anonymous said...

Decision support means software that takes as input patient level data and outputs some form of interpretation. The commonest forms of DSS we have today are drug-drug interaction checking, and computer interpreted lab tests (albeit many of those systems use simple statistical rues to flag if a result in in normal range).

DSS that we COULD have today (but mostly don't) include

1/ flagging tests that are inappropriate e.g. do not order that X ray for back pain - the evidence tells us it is a waste of money
2/ suggestions of which tests to order to include/exclude a diagnosis
3/ suggesting cheaper, more effective drugs than the one you are about to prescribe for a patient with a given diagnosis

Dr Ian Colclough said...

Anon July 01, 2016 11:27 AM argues that DS (Decision Support) should be developed now instead of being put off until after the record has been developed. Others argue that there is a need to get the record right before developing DS which, in my view, shows a lack of understanding of the rightful place of DS; perhaps they are motivated by self interest and a desire to focus on developing the record first without being distracted by DS.

There are two separate issues here with neither being strictly dependent on the other.

DS can be helpful depending on how it is applied; less so in the absence of a reliable comprehensive clinical record with which it can interact. On the other hand, DS tools can operate perfectly well in the absence of a clinical record. So the issue is more one of priorities, politics and pragmatism, as well as one of informed judgement which is often lacking in such discussions. Defining the cost effective benefits of DS tools can be difficult, elusive and a very subjective argument in the absence of a compelling evidence base.

Certainly, (1) flagging of tests that are inappropriate, (2) suggesting the use of cheaper alternate drugs that are equally appropriate for managing a particular condition, (3) suggesting appropriate tests to be undertaken to confirm or exclude a diagnosis, are all good examples of Decision Support software tools. How they are applied is critical to how well they are accepted and embraced by the user.

Developing a drug-drug interaction alert DS system integrated with clinical prescribing software clearly offers benefits until the prescribing doctors become annoyed by the alert warnings that they opt, not unreasonably, to turn off the DS alerts!

The reasons why this occurs are many, not the least of which is that all too often the drug-drug interaction warning system is made so complex by the system developers that they lose sight of what is really useful and how best to present the information in a way which will assist, but not hinder or annoy, the user.

Enrico Coiera said...

It is also important to understand that if your goal is to improve the quality, safety end effectiveness of health care then the evidence from decades of research shows that digital records on their own do not do much - they are a necessary element of the infrastructure.

It can come as a shock when one reads multiple studies and systematic reviews to discover that digital records have almost no impact on outcomes, and can even carry an impost on efficiency due to increased time documenting. If you actually want to translate the latent power of records into clinical actions that improve care, only decision support does that reliably and with clear effectiveness.

Its the 1-2 combo that does it. There is no rationale behind tying one had behind our back as we have done for more than 20 years - and probably has hampered the EHR campaign to boot, as the benefits you could use to sell the enterprise that come from DSS have not been visible.

That one can design poor EHRs or poor DSS that diminish their value and can cause harm - that is another important and seperate topic.

john scott said...

Enrico,

I agree in large measure with your statements.
I am fascinated by your statement: "if your goal is to improve the quality, safety end effectiveness of health care..." These metrics obviously require decision support tools.

What is missing however, is the efficiency metric. It is missing for good reason. The reason being that the traditional measure 'productivity', from manufacturing, doesn't work in healthcare. The Commonwealth Health Department recognized this fact in a paper prepared for Health CEOs and stated that what was needed was a 'specific concept' not an 'average concept'.

A 'specific concept' would have applicability at the point of care, that is, the point of utility of knowledge and information. Such a metric would help us reveal the quality of cooperation, coordination and collaboration among clinicians and organisations in regard to both stored records and information flows / exchanges and the impact of deficiencies.

As such, if we are to assess digital records and EHR initiatives to determine what is and isn't working we need to lift our focus. Electronic health records and decision support are necessary but not sufficient if we are to have a sustainable, agile and integrated health system to meet the evolving needs of our community.