The latest
news on the plans for the trials comes from Senate Estimates a week or so ago..
Here are the
relevant bits (Skip down a page or so if you have already read it all)
Senator MOORE: What consultation has been had
with the medical profession regarding the decision to shift to the opt-out
system?
Mr Madden: The recommendations from the
review were to increase participation in the system. The health community had
said, 'If we had the majority of our patients in the system, we would be more
compelled and likely to take this on and use it.' That came through in the form
of submissions from the AMA, RACGP, Consumers Health Forum and others—
Senator MOORE: That was prior to 2014.
Mr Madden: That was in 2014, in the report.
We did do some consultation directly with health care providers and the
community between July and September 2014 just to confirm views about how that
would work. The point I need to make is that opt-out, in the current budgetary
decision, is to trial opt-out in at least two geographical locations to
understand the issues and make sure that we have continued to maintain the
consumer's or individual's confidence in the system and to understand the
issues that might come with that. So we have not taken a decision to move
completely to a national—
Senator MOORE: But you have made a decision to
go to the trial of two opt-outs, which is a distinct change from the other
process. This committee did an inquiry into the original legislation and the
opt-in/opt-out model was a great point of contention at that time. So now, as a
result of the review, we have gone with a trialling of opt-out.
Mr Madden: Yes.
Senator MOORE: What form are the trials going to
take; has that been determined?
Mr Madden: We are looking at least at two
trial sites. We are working with states and territories through the Australian
Health Ministers Advisory Committee on the possible selection of sites. We need
to find sites which are discernible so that people who are in the sites in the
trials know that they are in the trials and people who are outside know that
they are clearly not. So we will be doing consultation on the location of the
trials. We will be trialling our communication processes and also working
through education, communication and training for GPs and other health care
providers in the trial sites. While the population and the individuals in those
areas might have a registration, we want to make sure that the health care
providers are engaged with that system as well. That is why it is important to
work with the states, so that we have a connection through the public hospital
system.
Senator McLUCAS: Are you proposing to use a PHN
boundary for those trial sites?
Mr Madden: Not necessarily. The trial
population that we are looking for across, again, a minimum of two and a
maximum of five, would be about a million people. So it would probably be an
amalgam of some PHNs and it could be based on postcodes that join a couple of
PHNs together. We want to get a spread that includes lots of people or
individuals and lots of GPs and specialists, allied and private, and public
hospitals to get the whole connected community of health care providers for
that community involved.
Senator MOORE: Have the terms of the trial been
determined yet?
Mr Madden: No. Where we have got to at the
moment is to describe the criteria that would pick out what those trial areas
might be. We will be looking to appoint an independent person to create the
evaluation criteria for that, certainly well before the trials begin.
And here:
Senator MOORE: I was just talking with you, Mr
Madden, and also with NEHTA about the opt-out trials and in terms of the
process you said you were going to look at two sites. Is that right?
Mr Madden: Yes. We are looking for a minimum
of two sites. We do not want to go any larger than five. Again, we have
criteria that would describe what would make for the best sites or not for the
best sites. Did you want to know about the logistics of the opt-out?
Senator MOORE: Yes, I do, because of the
process.
Mr Madden: By September we are looking to
have the sites selected. In the funding for the opt-out trials or what we have
called the participation trials, we have funding for education, communication
and training for healthcare providers and certainly a heavy dose of
communication for individuals in the areas so they are aware of what this means
to them, what they get as a benefit, what their rights are and what they do if
they choose to opt out. We would be looking to do that from early 2016 with the
training starting around about the same time for the healthcare providers.
We then have a period for two
months where we have a system available for the communities to inquire and get
information about staying in the system or opting out of the system. They will
have a system where they can indicate their expectation or their option to opt
out of the system and after that two months we will create skeleton eHealth
records for all of those people who did not choose to opt out. We will then
give them six weeks or so for them to log into and take control of their
records, if that is what they choose to do, because the eHealth system will
still have the patient or the personally control aspects. They can still
determine who can operate their eHealth record on their behalf, healthcare
providers that might be allowed to or not allowed to upload records to their
record and who can or cannot see particular records. They will have five weeks
to take control of those and to put all of those controls in place if that is
what they choose to do. Then about two weeks after that we will create the
records. We are looking to target that for having records in the hands of
healthcare providers and individuals after the controls have been set some time
during July 2016.
Senator MOORE: So it is just over the year?
----- End extract.
So, in
summary, after site selection we will have:
1. Education
of providers and consumers on what is happening, what their rights will be to
opt-out starting in early 2016 - with some training for providers in early 2016.
2. Two months
will then be spent with consumers being able to try the system and inquire about
and choose to opt-out etc.
3. Then
everyone who did not opt out will have a skeleton record created within the
system - presumably using data from the IHI service.
4. The opted
in consumers will then have five weeks to take control of their record and set
their desired access controls.
5. Two weeks
after that the record will be populated with all the other information like,
presumably PBS and Medicare claims data.
6. Providers
and users will then have access and the system will be available for use a
little over a year from now. Of course there will still be limited numbers of
Shared Health Summaries and other useful clinical documents.
At present we
do not seem to have information on:
1. How long
the trials will actually run? - it would need to be a reasonable while - at
least a year in my view.
2. Just how
the trials will ensure the consumers (and providers) are actually engaged with
all this - we are, remember, talking about a million people - many of whom will
be children, homeless, lacking literacy or internet access, be mentally
impaired or incompetent, be just who just ignore Government messages etc. (is no
response treated as agreement to have a record or not?).
3. What the
evaluation criteria for the Trials will be and how the trial outcomes will
inform what happens next?
4. How will
those who move in or out of a geographic trial area be detected and informed
what is to happen to them and what they need to do?
5. How will
those who reach an age of competence for independent decision making be alerted
that they need to take some decisions and how will children who desire independence
from parental access to their record be managed?
6. How will
children who do not have control of their record and who want to suppress
information (medications, referrals etc. that has been automatically loaded) from
parents and others and who are old enough to know what they are doing, obtain
the control they want of their record?
7. How will it
be determined who controls an opt-out record if the patient is for some reason
not able to take control for themselves?
8. What will
happen if a disengaged consumer has information automatically loaded into the
PCEHR they are concerned about being known to others and this information is
then disclosed via clinician access to the record (or more likely their staff)?
9. How will
control of created PCEHRs be adjusted in the event of divorce, family violence etc?
Feel free to
add further concerns of your own regarding the trials. I am sure there are many
others.
I have to say
to have an unconsented record created and populated for you when you are a demented
90 year old in a nursing home or a fifteen year old who wants nothing to do
with her abusive parents having access to her auto-created record seems pretty
bizarre. Surely we need to have a positive response agreeing to opt in before
record are created? If not the Government is setting itself for a ‘world of
pain’ I reckon. I wonder has this been properly thought through?
David.
26 comments:
Recently, hackers acquired the security clearance details on most US government employees. The data includes everything from 127 page clearance forms, detailing the most intimate aspects of their lives.
If it is on a computer system, it will be hacked. It will become public, will be sold, and will be abused. This is quite apart from the potential for abuse by governments in the future.
Doctors who keep records on paper, kept in secure filing cabinets, protected by alarms will find themselves quite popular, methinks.
I often wonder whether the Prime Minister, The Treasurer, The Health Minister and the Minister for Human Services, would take heed of a well worded position statement signed by 50 or more experienced eHealth software developers and practitioners urging them to terminate this insane PCEHR profligacy.
Hello Anon,
Is there a link to this 'well worded position statement'
We would all love to read it!
David.
Why would these guys listen to any "experienced eHealth software developers and practitioners"? They seem to be deaf to any sort of expert advice, from the UN, the IMF & ICCC downwards.
Hello David - you have misinterpreted what I said - let me be a little clearer.
I often wonder if any good might come from preparing a well worded position statement, signed by 50 of more experienced eHealth software developers and practitioners, and then sending it to the Honorable Members mentioned above urging them to terminate this insane PCEHR profligacy.
Instead of geographical trials, perhaps a better approach might be to take a different slice of the pie? For example, focussing on health summaries and medications data for older clients in aged care homes might demonstrate some real benefits.
Might this, might that ...... I have consistently promoted a different approach for a fraction of the cost, which would have wide support by vendors and consumers, which would result in early, widespread deployment of some critical eHealth solution(s)which once embedded into the daily business processes of service providers will not easily be displaced, and I have made this known to some bureaucrats and Health Ministers and their advisers on a number of occasions but, as always, deaf ears have consistently prevailed and they have walked away to do what they have always done thereby getting the same result. THEY DO NOT GET IT.
They are lost in the enormity of what they think they can achieve - small thinkers like June 17, 2015 8:38 AM have no place in their world. In my experience many of the 'small' thinkers are wise, experienced, smart and competent and they DO get it. The problem here is the bureaucrats see them as a threat and always have - how dare these small thinkers - 'experts' - try to tell us in power with all the money to spend that we have got it all wrong', how dare they.
I went to my doctor's today. I asked him if he uses the PCEHR. He said - no, it's useless.
He said the problem is that "they, the developers" never asked the doctors what was needed.
No amount of training of doctors will get them to use the PCEHR if it doesn't do what is needed.
And no amount of "usability" will help, because "usability" isn't the issue.
But the trials will be declared a success because they are not testing usability they are testing "the implementation of opt-out to ensure public confidence in the system was maintained".
Considering the public confidence is so low, it will probably be maintained.
The developers did ask the doctors what they needed. They got lots of answers, and then they picked some. What did your doctor think would be useful?
If they 'did ask' doctors for their needs, and then 'picked some' I guess they used a dart board to make the choice?
Unless they had deep experience in clinical informatics, then one answer from a clinician might very well seem as important as another. Sifting through user needs to come up with compellingly useful design is a different skill set to being an expert in the engineering mechanics of how that design is built. I fear the software engineers ticked themselves into thinking they were also interaction designers.
Grahame,
We didn't have time to go into what he thought would be useful.
Re what doctors and others want....
There is a huge difference between automating what currently happens, incrementally addressing existing problems/issues and completely changing the way the whole system works.
I contend that if you expect people who are expert in what they currently do to tell you a much better way of doing something (that might in fact make what they do obsolete) then you are fooling yourself.
In the case of the PCEHR all they have developed is a different sort of filing cabinet that doesn't even contain all the information a health professional needs to do their job, never mind support a new and better way of delivering health.
The developers did ask the doctors what they needed. They got lots of answers, and then they picked some."
I beg to differ. Key feedback on the original Concept of Operations by doctors and clinical peak bodies voiced their concern about incomplete records with 'blocked' documents. Also they advised that inclusion of PBS and MBS claims data was not only useless, but not safe to include in the record. They warned against not considering clinical workflow; and they specified that they needed a composite view of data in a record, with allergies, medications etc - not multiple documents that would need to be navigated and compared.
The problem was not that the doctors weren't asked, but that their advice was ignored by DOH. Developers cannot necessarily be blamed, as they were required to comply with NEHTA solution architectures and specifications, and there was no traceability back to the Concept of Operations and feedback from doctors. It would be an interesting exercise to compare what has been delivered with the original Concept of Operations and clinical feedback received.
If you look at the document map in the PCEHR High Level System Architecture document, available on the NEHTA website, you can see that the Concept of Operations is the primary source document for the system and feeds into everything else, including Business Requirements.
It also feeds into a High Level Design which in turn feeds into the PCEHR High Level System Architecture.
When I was at IBM, I was certified as an IT architect, which is accepted by the Open Group as being equivalent to their certification (which is much more rigorous than TOGAF certification) , so I claim some reasonable degree of competence in this area.
I have never seen any sort of methodology or framework that could produce the document map in the PCEHR High Level System Architecture.
Best practice starts with business requirements, develops various architectures and finally moves into Design.
The document map indicates that everything is backwards. It's almost as though they have unilaterally decided on a solution and then produced a set of documents that appears to the uninitiated as though they have followed some sort of methodology.
Was said at the time - A concept of operations document was a curious choice and said much about what the architects/software developers at NEHTA thought the problem was.
What is even more curious in that document map is that at the top it has a series of headings that belong to a Zachman style approach and down the left are the words Conceptual, Logical, Implementable, which belong to a Structured Analysis approach, although Physical is more often used than Implementable.
IMHO, not the work of an experienced architect. And I would have thought that a project supposedly trying to develop a long lasting component of a national infrastructure initiative would have needed quite a lot of brainpower and experience.
Did it get it? The evidence would suggest otherwise. Although it could be that managers (both project and public sector) were really at fault.
Bernard, I believe those terms are taken from the NEHTA Interoperability Framework (https://www.nehta.gov.au/implementation-resources/ehealth-foundations/interoperability-framework). I'll see if the author wants to (and can) contribute here
Looking at this set of documents:
1. Interoperability Framework Version 2.0 — 17 August 2007
2. Concept of Operations: September 2011 Release
3, High-Level System Architecture PCEHR System Version 1.35 — 11 November 2011
4. eHealth Interoperability Framework Version 1.1 30 April 2012
They are not compatible or consistent.
A Concept of Operations is not mentioned in document 1, is referred to in document 3 and mentioned and defined in document 4.
However the definition in document 4 bears little or no relationship to the actual Concept of Operations.
The terms Conceptual/Logical/Implementable are not mentioned in docs 1 and 2 but
is defined in doc 3 and mentioned 4.
However the definition of Conceptual/Logical/Implementable is not consistent with normal architectural modelling. In doc 3, the High-Level System Architecture, Conceptual is defined as being Stakeholder centric and Implementable as Platform Specific.
Accepted architectural practice states that each of the four major architecture types Business/Application/Data/Technology can have Conceptual/Logical/Physical perspectives.
There is an interesting footnote in the High Level System Architecture on page 1, under Architectural Approach
"The NEHF (National eHealth Framework) differs from other popular frameworks such as TOGAF. TOGAF is more of a process-oriented framework for creating and managing architectural artefacts. NEHF is a specification framework used to describe system architectures. NEHF. and the SAIF framework it is based on. are strongly influenced by ISO 10746, which is an international standard reference model for open distributed processing (RM ODP). The viewpoints and levels of abstraction in the NEHF are more similar to the categories that underpin the Zachman framework. However, RM-ODP also provides a specification language that is compatible with UML."
This rather strange set of statements appear to be at odds with doc 1 which states that TOGAF is to be adopted. Doc 2 has no mention of TOGAF and doc 4, has TOGAF9 in the References section but is not actually mentioned in the rest of the document
NEHF is not mentioned in doc 1, 2, 4, but is referred to in doc 4 the High Level Architecture.
What is even more interesting is that there is no document called the National eHealth Framework available on the NEHTA website.
I really can't make sense of the architecture stuff that is publicly available; either the approach or the architecture documents themselves.
And what is really missing is a system development methodology. An architecture framework is really just a table of contents for architecture artifacts, maybe with a guide to their production. A system development methodology is the fundamental approach in which architecture is just one component.
A search of the NEHTA website does not return anything remotely like a development methodology.
Let me get this straight. Grahame, are you saying that there was only a *single* author of the NEHTA interoperabilty framework? If so, that's just head-shakingly wrong.
..... and the architect and author was .........
I believe there was a single lead author, yes. Of course there was a much wider design and review team. FHIR works similarly, though there are many authors now. But you should all assume that program timelines trumped any quality processes that any managers or architects wished for.
"But you should all assume that program timelines trumped any quality processes that any managers or architects wished for"
Grahame,
Hardly an excuse for the work that was not up to scratch and not properly reviewed.
The program timelines were nonsense as all involved and the serious watchers knew. Ms Roxon has a huge amount to answer for IMVHO. Another case of a politician 'not knowing what they didn't know' and rather supine technical staff.
Sadly I think it has got worse since!
David.
How can unrealistic timelines not lead to compromises in the work? Other than everyone quitting, what do you think will happen?
It totally depends on your views on accountability and ethics. Everyone is different. I hope I would have walked out - but how can you ever know? Everyone to their own lights.
David
An even better alternative to walking out was the decision by some experts who were not prepared to compromise on their standards, ethics, integrity and professionalism, who would not prepared to join NEHTA because, after extensive investigation, it was apparent that they would no be able to help NEHTA due to the megalomaniacal sycophantic behaviour that was being exhibited by those in charge. There is an abundance of evidence now available to prove the wisdom of those experts decision.
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