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Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Sunday, November 05, 2017

Sorry To Harp But We Really Need To Rethink The myHR – It’s Just Plain Stupid Not To!

This appeared just a few days ago:
3 November 2017

First the rugby, now national e-health records

Government Technology
Posted by Jeremy Knibbs
What is it about small countries that are cold, wind beaten, have highlands, and lots of woolly hooved livestock? Both New Zealand and Scotland punch well above their weight in sport, especially rugby. And both do the same in digital health.
If you’d like a few answers to the digital health side of this strange cultural phenomenon Dr Libby Morris, clinical lead on Scotland’s SPIRE program, the pragmatic and so far successful equivalent to our My Health Record saga, might have a few. Dr Morris is the keynote speaker at next week’s annual summit of the Medical Software Industry Association (MSIA) being held in Melbourne.
To offer appropriate contrast, Tim Kelsey, and others from the Australian Digital Health Agency, will be there as well, spruiking the “Australian way”. It will be worthwhile seeing the two countries head to head. The approaches of both are a long way apart, and most commentators have Scotland a long way in the lead, despite starting five years after us. 
SPIRE stands for Scottish Primary Care Information Resource. If you’re a GP you’ve got to love the name from the outset – it’s putting primary care at the centre of things up front, where it probably should be. Some would argue that My Health Record is better because it’s patient centric. And that’s where you start to see how Scotland may have got things right and we may have missed the mark somewhat.
Patients don’t care about their EMR and they have no idea why a form of EMR for all citizens might be a good thing. GPs do. Patients and EMRs are the centre of their world. So why not start with them at the centre and work outwards? Scotland seems to have done just that. Get the main professionals engaged first and go outwards to their patients and make sure the stakeholders are in the boat before you start rowing further out to sea.
Much better still, at no point did the SPIRE program ever get close to contemplating a “boil the ocean” approach, which is the path we’ve taken with the MyHR.
Lots more here:
The lesson out of all this is very clear. Don’t push a system that almost no-one wants to use rather than supporting the clinicians and their patient to work optimally together supported by information they both know and care about.
The rest of the Digital Health infrastructure is best optimized by the Government to support the clinician and the patient NOT some data mining and analytic objective of the Government.
The rest of the article just emphasizes how misguided many of the components of the ADHA Digital Health Strategy are and how badly it seems to be being executed and communicated so far.
The positive wrap for the MSIA (Medical Software Industry Association) and its centrality in all this is both true and important. The more time passes, on the other hand, the less aligned with what matters the ADHA seems. Go the smaller and apparently much smarter countries!
Comments welcome!
David.

26 comments:

Anonymous said...

So given you and your readers are so disenchanted with the ADHA and the Department and the MHR how do you propose the MHR should be developed?

Also, given the politics and vested interests which must be considered WHO should lead the development? And who should the stakeholders be?

Dr David More MB PhD FACHI said...

Sorry, I want it shut down and replaced with distributed systems - not developed further.

The market will provide what is needed I believe...like say apps that can log into live GP systems with agreement from the GP. This allows the GP to guide and help the patient etc. with full patient consent guaranteed!

David.

Anonymous said...

I agree With you David. There is a hugely important role for governments and entities like the ADHA. If they have to anonymously ask you then they know not want they have done. One differential is no one in soo called leadership roles in ADHA current or in the past work for NZ or Scottish eHealth.

Anonymous said...

That sounds like a Humpty Dumpty sat on the wall approach. Anything goes. Get rid of the bureaucrats and all the King's horses and STOP the funding. No direction, no vision, no strategy, let's have a go, leave it to the market, one-in all-in. I wonder if that's really what the experts want who read this blog.

Anonymous said...

On the one hand you ask what can be done to get back on track and on the other you want to shut it all down and somewhere in between you seem to believe MSIA should be positioned as the centre of everything. Confusing and contradictory? - spare me.

Dr David More MB PhD FACHI said...

I must not have been clear. There are many better ways for patients and doctors to share EMR information than the myHR. I believe the software industry is well positioned to offer those and save a lot of money and avoid all the side effects attached to the myHR.

The approach I suggest is already used in the UK among other locations. There are all sorts of other distributed approaches that provide better, more current information that don't involve a huge Government database which holds information of unknown quality, integrity and currency.

Time a few minds opened to the options.

David.




Anonymous said...

Rimes change, technology presents new opportunities, PCEHR was something that was a technology available at the time, much the same as VHS or the fax. We should look at the upside of the PCEHR and use it as a key stepping stone, hanging onto it stubbornly is not doing its legacy any favours.

Anonymous said...

I disagree ... PCEHR was not an available technology it was a concept for which the technology solution had yet to be developed.

Bernard Robertson-Dunn said...

There is no upside to the PCEHR.

The PCEHR/MyHR was, and is, a failure, not because of the technology but because of the decision to create a huge database in which the federal government can store patient medical data over which (in spite of what it claims) patients have no control whatsoever. The government owns the data - you can't delete it or change it. Once the government has your data it gets to keep it. The law as it exists actually mandates it.

IMHO, David is quite correct in his assertion that a distributed system that shares information among health care professionals is much better. The only people who should store and access patient medical data, are those with an interest and role in a patient's health care. The federal government's role is in industry funding, not in an individuals' health.

Anonymous said...

there is no data

Bernard Robertson-Dunn said...

"there is no data"

That's not quite true.

According to the latest statistics (which are actually in error, they've not updated the individual registrations - 5,269,296; it's the same as last week. The dashboard spreadsheet is probably correct) the total number of shared health summaries ever uploaded is 1,200,778. (IMHO) only about 20-30% could possibly be considered anything like current i.e. 240,000-400,000.

Compare that with the data the government has uploaded (and made available via the Internet, what could possibly go wrong?) 579,309,067 which is mostly Medicare/DVA/PBS records. Very little of which is health data, it's mostly a record of visits to health professionals or proscribed medicines with almost no reliable clinical value whatsoever.

In other words, most of the data in MyHR came from the government anyway. All they have done is make it less secure and less private.

And I've still not seen any statistics about use or benefit or savings.

Dr Ian Colclough said...

@5.05 PM –“ ‘there is no data’ – That’s not quite true”. I agree Bernard.

I would rather we said there is no clinically useful data that can be trusted and relied upon for clinical decision making.

@10.45 PM – I too agree with David. - “David is quite correct in his assertion that a distributed system that shares information among health care professionals is much better. The only people who should store and access patient medical data, are those with an interest and role in a patient's health care.”

That raises the questions:
1. What comprises the distributed system (architecture)?
2. Who are the people (stakeholders)?

Bernard Robertson-Dunn said...

re: 1. What comprises the distributed system (architecture)?

This is the original "system architecture" about which I've been very critical because of it's use of the terms conceptual/logical/physical - which totally non-standard when it comes to this sort of multi-stakeholder problem:

https://www.privacy.org.au/Campaigns/MyHR/docs/NEHTA_1002_2011_PCEHRArchitecture_HighLevelSystemArchitecture_v1.35.pdf\

A distributed system architecture would have two requirements:

1. There is no central database - all data is held in repositories and/or clinical systems

2. The central component (the PCEHR in this document) works only at the interoperability/transport layer and cannot see the content of the interactions between the endpoints. It knows where data is, but not the data itself.

Refer to figure 4, page 18.

grep /PCEHR System/Interoperability/

Two other consequence would be

1. the system would include all the components in that diagram, not just the PCEHR.
2. access controls would be implemented at the repository/access mechanism levels, not centrally.

These "minor" changes in the system architecture would result in major changes to the whole system, which is why the should have been sorted out very early on.

As it was, some dumb project manager decided that the only way forwards was a physical, central, government owned and controlled database. Which is why, after over five years, nobody trusts and/or uses the system.

john scott said...

This conversation highlights the difficulties of trying to sort out information and information flows at the level of technology. Yes, technology is important. But it is at best a second or third order issue.

What is of paramount importance is a clearer understanding of how we best approach clinical interactions and the clinician - patient interaction necessary to support the delivery of care within and across clinical settings and professional silos.

It is at this level that we obtain purchase on shared meaning (semantics) as well as the norms governing information sharing.

IMHO it is time to raise the focus of our conversation above the technology to the human level of health in order to better understand how we might productively go forward.



Bernard Robertson-Dunn said...

John,

Yes I agree, which is why the question "should the government see and/or own a person's medical data?" without good reason is so important. The technology by which they may do this is irrelevant.

The fact that the technology they have put in place does this, without fully disclosing/discussing the issue and obtaining everyone's permission, is appalling.

BTW, paying for healthcare and pharmaceutical products is a good reason - as far as it goes. It doesn't go as far as broadcasting such information and/or using it for purposes it was not gathered/intended.



Dr Ian Colclough said...

@ 9:43 AM “That raises the questions: 1. What comprises the distributed system (architecture)?” I think the first question has been answered very well by Bernard and John.

The second question remains: 2. Who are the people (stakeholders)?”

Also, John raises another curly ‘issue' - question’ when he says “it is time to raise the focus of our conversation above the technology to the human level of health in order to better understand how we might productively go forward.”

Question 3. How can that be done?

Bernard Robertson-Dunn said...

Q2: everybody - literally; we are talking about the health care of all Australians

The full range of other stakeholders is probably not known because we are talking innovation - different/new ways of doing old stuff.

q3. It can't be done top down. Learn from history. The English industrial revolution was so successful because the environment for competition, trial and error, evolution, revolution and risk taking was promoted by government. But government played no part whatsoever. They provided funds and the Royal Navy to protect trade routes - both for getting raw material and delivering finished goods.

Compare that with the French who tried to impose government, engineering and scientific control. They failed miserably.

The English went on to found a world wide empire; English is the international language. The French are still in decline when it comes to major contribution. They are even trying to control their language.

john scott said...

This is in partial response to Ian's question at 12:01PM regarding 'How can it be done?'
I am purposefully working at a level above technology because this is where the changes have to occur and indeed are beginning to occur.

Nature of Our Systems
We begin by recognizing that the systems we design, build and benefit from are all socio-technical systems. That is, they have a human part and a technology part.

Underpinning every system is an Idealized View which describes the roles and expectations of the stakeholders. This Idealized View changes over time, as witnessed by the introduction of Medicare and reforms to private health insurance, etc. Some countries have chosen other idealized views. The emergence of the Internet has also had a profound impact on Idealized Views.

There is an even deeper World View that informs thinking about policy and regulation.

The Value of Crisis
A crisis of confidence in the existing World-View has to occur for a new way of thinking about the world to emerge and make sense.

One can imagine a crisis as the stress that accompanies the birth of a new state of affairs. In this view the old order no longer exists but is largely destroyed as our circumstances are transformed.

A crisis is important because it exposes how a system is understood by policy elites. That understanding is the paradigm on which the conduct of (system) policy is based.

A paradigm is a way of looking at the world that, in its time and place, makes sense to a group of people.

Bernard (in 1:25PM) has provided us with a timely illustration of this point.
He has gone back to the English Industrial Revolution to examine the World View, and in this case, cites two elements:
1. The role of government; and,
2. The role of competition.

A Crisis in World View - the Productivity Commission Report
The Productivity Commission has recently released its "Shifting the Dial" report which highlights the 'economic policy reform narrative' crisis and flags the desirability of change in current World View. Ross Gittins elaborates on this 'shift' in a recent (about 5 November) article in the Sydney Morning Herald entitled: 'Few noticed we just saw a radical shift in reform thinking'.

Implications for e-Health
The definition of 'productivity' in service producing industries lies at the heart of the world's e-Health challenge.

The Productivity Commission does not have an answer here.

Service producing industries are not in the first instance about the efficient use of scarce resources, but about the creation of value and wealth through mutuality.

The resolution of this productivity challenge will have to meet what can be called the 'productivity scorecard' test:
1. a shared, meaningful definition to workers and managers;
2. admit both objective and subjective measures;
3. supports measuring and monitoring; and,
4. is capable of implementation.

Next Steps for e-Health
Our first step forward has actually been taken by the Productivity Commission by opening up the conversation to discuss a new economic policy reform narrative; one which acknowledges three major contemporary challenges:
1. Services as the locus for innovation and value and wealth creation;
2. Fiscal sustainability; and,
3. Growing social inequality.

Reflecting on Bernard's Industrial Revolution comments, we can add that the strength of the capitalist system has been based to a significant degree on the development of systems of trust and credit (investment); systems which are highly normative, that is, based on what is considered to be normal and the correct way of doing something!

Mutuality and trust are the basis for cooperation. We need organized, purposeful, sector-wide cooperation in order to provide the means to enable the electronic sphere to make its contribution to a modern, 21st century health system.

These two issues of 'productivity' and organized, purposeful, sector-wide cooperation are where we should be turning our attention.

Bernard Robertson-Dunn said...

John,
Well expanded. The only thing I would add is tat we need a balance between cooperation and competition. Which defines the only realistic role for government - to achieve a degree of balance, and most certainly not as a participant.

Dr Ian Colclough said...

Excellent commentary John and Bernard too. The issue of achieving a healthy balance between achieving a high degree of cooperation in an environment which is very competitive is an aspiration which cannot be easily achieved.

Even so I agree with you Bernard that it is the only realistic role for defining government's involvement.

However experience tells me that the strategies and the operational and business models required to bring that about are far and away beyond the ken of government (politicians and bureaucrats); particularly when Government should not be designated 'as a participant'. Whilst I have no problem with that most people with whom I have discussed that concept over the last decade have found it almost impossible to comprehend; and I understand the reasons why, which I can best summarize as an inability to think differently.

Grahame Grieve said...

> Government should not be designated 'as a participant'

But it must be, since it provides healthcare services (and I, for one, would really *hate* to have a system that behaves any more like the disaster in USA than it already does)

The key is the governments 2 roles - providing governance, and providing services, must be transparently firewalled from each other in the health eco-system. The lack of this led to the collapse of the previous standards process; if we can't get this right, we won't be able to start the process again

Anonymous said...

"But it must be" ........ It always has been thus.
"But it must be" ........ Lessons from history would suggest otherwise.
"But it must be" ........ Not necessarily so.

Bernard Robertson-Dunn said...

>> Government should not be designated 'as a participant'
>But it must be, since it provides healthcare services

The government (I was assuming a Federal context) does not provide health care service - it funds other people to provide health care service.

The Federal Department of Health is a policy agency, not a service delivery agency.

Grahame Grieve said...

Bernard, the discussion wasn't 'the federal government'... had it been, my comments would have been a little different. But courtesy of the MyHR, the government is, whatever we might thinkg about it, a service provider in this area.

john scott said...

Bernard/Ian, I agree that we need a framework that provides a clear understanding of the where and under what conditions cooperation and competition operate.

This has important implications for the digital agenda, particularly in regard to informing and enabling innovation in health care service delivery.

Grahame, I agree most definitely that we do not want to go any further down the path toward the American model.

Further, I agree in broad terms with your separation of government roles into: a) governance; and b) service provision. I would add another contribution which is c) investment in the public interest. Our health system is for ALL Australians.

Bernard Robertson-Dunn said...

"...courtesy of the MyHR, the government is, whatever we might think about it, a service provider in this area. "

My (and David's) argument is that it shouldn't be.