[1] HEALTH ONLINE: A HEALTH INFORMATION ACTION PLAN FOR AUSTRALIA, Second Edition

National Health Information Management Advisory Council September 2001

 

The concept of total community involvement seems to have been discarded at that point by the NEHIPC as can be seen by the following illustration of the complex national governance arrangements, existing by 2010.

 

We have not been able to uncover the decision/recommendations of this committee, nor its many subgroups, but it seems evident that the basic governance management recommendations from the Health Online report, and their repetition as key factors within the subsequent consultants reports, has not been recognised as central to establishing the essential participatory governance required by the proposed enterprise.

The consequential progress since 2001 has been minimal, and very costly. The estimate by AHMAC in accepting the Deloitte recommendations in 2009 was $5 billion to that time.

A recommendation in 2004 to set up a separate technical IT company owned 50 per cent by the Federal Government and the balance by the States and Territories, to be known as the National e-Health Transition Authority (NeHTA), was accepted by COAG. It reported to NEHIPC. Each stakeholder provided a director, being whoever happened to be the current Health department chief executive in each jurisdiction; and its proportion of the funding.

One of NeHTA’s initial functions was to design the so-called Individual e-Health Record (IEHR). Work on this was proceeding, however, out of the blue, the National Health and Hospitals Reform Commission inquiry, reporting in 2010, and for unclear reasons recommended that the IEHR project be reshaped to provide a so-called Personally Controlled e-Health Record (PCEHR).

Our response to the subsequent Senate inquiry into the proposed PCEHR legislation in July 2011, Appendix 1 pointed out this situation, and the need for totally independent stakeholder

engagement rather than the two statutory advisory groups proposed to report to the Health Department Secretary in the position of PCEHR Systems Operator.

The independence of the Office of the Australian Information Commissioner (OAIC) was established by an amendment to the proposed bill. We are aware of the somewhat delayed MOU covering this arrangement between DoHA and OAIC.

However the community’s so-called Independent Advisory Council is not in reality independent, in that its members were appointed by DoHA and reports only to the department Secretary, who is also the PCEHR system operator. We are unaware of any public reporting or community knowledge of the activities of this Advisory Council.

Due to community concerns, these arrangements were adopted within the legislation as an interim measure only, pending further consultations on long-term governance and management of the PCEHR as it came into wider use.

The legislation makes provision for changed arrangements to be considered for implementation by July 1, 2014. CeHA did not favour this delay but did agree to it as an interim measure to June 2014 in lieu of a more appropriate governance arrangement, the council reported to the Minister.

This could be progressively developed based on emerging experience as a separate operating entity from 1/7/2014.  This original date had now been put back, which means progressive steps to proceed to effective whole of community engagement have been delayed.

CeHA will continue to advocate for effective community engagement, within a structure that conforms with the recommendations of the Health Online report and accepted by the Parliament.

This was clearly advised as a key element of the Deloitte report to COAG/ AHMAC, which was adopted as the National E-Health Strategy in 2009;

Key issues remaining unaddressed?

In Australia, the principal reason is because those responsible for advising COAG/ AHMAC seemingly have not put forward the key recommendations of the Health Online report in respect to governance and, in particular, to practical engagement with all stakeholders from day one.

That fact has been consistently pointed out by the clutch of expensive consultants who suggested various routes and detail along the way.

However, the recommendations in the agreed National E-Health Strategy were underpinned by Deloitte’s proviso that they wouldn’t work unless the Health Online governance arrangements – based on total community engagement at the operating level – were implemented.

“Finally it is unlikely that any of the strategic work stream outcomes can be achieved unless supported by a governance regime which provides appropriate coordination, visibility and oversight of national E-Health work program activities and outcomes.”

Another key factor involves computer processing of information. This is clearly a serious global issue.

For example, Enrico Coiera, Professor and Head of the Centre for Health Informatics at the University of NSW continues to join the many others in identifying why the detailed, established standard clinical language requirements are so hard to convert safely to an inflexible electronic format, in large chunks across the vast range of clinical knowledge.

In other industries, the basic computing processes are run by experienced IT formatting people who are used to dealing with compatibly stable, standardised situations, rather than the complexities of the changing medical and physical situations of health which are individual to every person.

Whilst these challenges have been going on, unresolved, for over a decade, the genomic understanding of the body is providing opportunities for new treatment procedures that might need quite different recording, in ways not yet thought of, but whose need will require a normal, step by step development approach.

Be that as it may, we are still left with the fundamental issue of being better able to share knowledge between clinicians and consumers, and, probably more importantly, with other clinicians and researchers within a scenario that cannot be achieved via one-sided, compartmentalised, manual records.

The importance of this is recognised; it is accepted that e-health is the best option for progress.

However no one sector holds sufficient universal knowledge or skills to the overall systemic requirements and teamwork to the degree required.

It’s clear that so far the cost has been very high, the targets are elusive and announced results tending to be overblown.

Locally, we are also aware that it is proving very difficult to have clinicians engage with the target of fully sharing data as envisaged.

Many clinicians hold the stated belief that the original proposal for the PCEHR, as a shared record, was flawed and would introduce safety hazards as well as being likely to reduce their diagnostic abilities. Such reservations whilst well known have tended to be left publicly unsaid but this is changing.

Many clinicians will continue to rely on their own unshared records and seem to regard their Medicare claims information as sufficient data to be provided to the PCEHR, but not adequate for quality diagnosis.

There may be other legal responsibility reasons for this apparent stand-off which also needs serious attention.

After having seemingly assumed this confrontation could not be resolved, DoHA retreated, agreeing that there would be two separate records and that clinicians would request financial incentives to become involved, such a measure has now been devised.

However, as several clinicians may be involved in treating each consumer, and they will likely be keeping their own separate, unshared records for each patient; this could create a situation overlooked within the public understanding that a suitable personal e-health record may not be available where and whenever it is needed.

The present sparsity of meaningful content in the PCEHR makes judgement of this aspect impossible.

Without a comprehensive response as to how the secure sharing of data through the multi-repository structure (as set out in the NEHTA Concept of Operations proposal), will be introduced and managed is also an unknown situation of concern to consumers. It is also a legislated requirement that such data not be stored or handled offshore. However this essential requirement has already been informally challenged.  So we need to beware.

A major challenge flowing from the Government decision not to have a PCEHR “access card-like” single database has led to the situation of having multiple data repositories holding individually fragmented pieces of shared data to be then put together in some way. It is also a legislated requirement that such data not be stored or handled offshore.

The need to cover this seemingly awkward situation to record the health services of 23 million (and expanding) consumers feeding off 800,000 individual operators within about 80,000 health service provider organisations is a significant challenge about which the community has not been kept informed.

 

Figure 2. Fig 10 from PCEHR Concept of Operations

So Fig. 10 of the NeHTA Concept of Operations paper came into being to show how the tsunami of individual health report data would be securely controlled by having the items brought together for each consumer – involving an average of 22 consultations per person per annum (i.e. 506 million report items) – and that’s before counting the non-Medicare claimable services provided across the community also intended to be drawn into the record. However the average figure is somewhat / misdirected when applied to the infants, aged, chronically ill, disabled, mentally ill, etc component of the community that comprise about 20% of the population and 80% of the cost.

NeHTA conducted the first and only consultation about how repositories will work in January 2013 (better late than never).

This event produced some surprising information, much of it not yet on the public record.

Several private repositories are already operating, and several more are in planning mode – yet essential standards and connectivity are not apparent even in planning mode.

Seemingly the OAIC has not yet been consulted beyond the Con-Ops Fig 10 design which plans on combining all these – not yet standardised – data streams into potentially 23 million individual PCEHRs through a central indexing mechanism to be operated by the so-called National Repository Service. The design of the National Repository Services (NRS) is currently contracted by DOHA/NeHTA to Accenture, but it is intended to be operated by Medicare with an acceptable securities arrangement yet to be finalised. We are very concerned with the practicality of this proposal.

Another issue of concern to consumers is the manner of promoting opt-in registration and secure access to one’s own health records and to authorised providers and also to their staff who incidentally are not required to be PKI check system processed. Such checking in whatever form is to be handled by each employer. The manner of such check has not been made public.

Originally it was planned that online access would be through this secure consumer portal, complete with audit trails and other privacy safeguards.

But it now transpires that consumers can only access the PCEHR by contracting the Government’s single online access point via MyGov website; involving the mandatory creation of a MyGov account in combination with the various Centrelink services.   The detail of this is buried in the minutiae of the secondary registration documentation.

This however is not mentioned in either the 20-page e-health registration booklet provided to consumers, nor the actual 12-page application to register form.

This arrangement needs study as it seems to provide for Access Card type entry of one’s personal data by a string of “unrelated” government agencies.

The basic cause of this long line of uncertainty involving both security and reliability of critical data is very concerning. It arises from the lack of application of the Four Cs Principle across the health system, all the way from COAG right through to the long disregarded, non-involved consumer.

The essential 4C’s principles are Communication, Cooperation, Collaboration and Coordination, but always subject to the key rule of “Keep It Simple”.

The further issue being created by all this is unnecessary complexity.

The key problem-solving rule that needs to always be in focus when contemplating why e-health is so difficult is one of cause and effect.

The actual cause has been long known, but is not recognised as such.

It is the absence of whole of community engagement and two-way consultation, throughout all stages.

Whilst, as is common; poor performance (i.e. the inevitable effect), is frequently given as cause of the overriding problem, thus needing misplaced attention and increased but wasteful funding rather than the lack of identifiable responsibility for effective organisation and implementation to suit the need of all stakeholders.

With this eHealth operation, no-one seems to be actually responsible for it.

This story is to be continued and will pick up on separate issues of concern, for instance, standards, quality and safety and others mentioned elsewhere.

Whilst as is common, poor operator performance is frequently given as the cause of what is actually the overriding problem, which in this case can be attributed to the lack of identifiable responsibility for the detailed implementation program as set out in the final Concept of Operations document prepared by NeHTA and released by DOHA on 9^th September 2011.

There was widespread concern at the time that this proposal was incomplete in terms of its governance provisions, which were quite vague and unlikely to suit the needs of many stakeholders.  Providing the required eHealth infrastructure is a quite complex operation.

The provisions of the “Concept of Operations” seem to be somewhat misdirected in that no party is structurally placed to attend to the overall responsibilities.

 

Governance

We are obviously dealing with a proposal which will require cultural change across the whole health sector.

We doubt that the consequences of this are recognised across any of the industry sectors at the grass roots level. Those consequences were made perfectly clear in the original Federal Parliamentary Health Online Report and we accept them as being valid as per our earlier reference.

A number of prominent consultants have also agreed with this assessment including the ultimate Deloitte action recommendation accepted by all Australian Federal and State Governments in 2010.

In their principal recommendation, Deloitte qualified their report with the comment that unless the whole of community engagement in the Governance Structure was applied, then success could be jeopardised. This long standing recommendation, in our view has not been adopted in any meaningful way.

This recommendation has been primarily based on the essential need to break down the silo mentality that pervades the health system management and will inhibit any successful reform of the health system itself, let alone achieve the environment of collaborative teamwork which is absolutely essential for an eHealth Network to function as envisaged.

This critical Governance factor was recognised in an original consumer input back in 2008 and we suggest that the evidence now emerging globally suggests that failure to create community engagement is a principal reason for failure to make targets.

There is an overriding need to balance “top down” policy and practical “bottom up” operating techniques.[1] 

 

Privacy and security system operation

Consumer dissatisfaction with this key requirement can become a major blockage to Consumers opt-in or even to subsequent withdrawal. This was recognised at a Senate inquiry and the proposed legislation was changed to provide for independent over-sighting by the Office of the Australian Information Commissioner – OAIC.

CeHA is of the view that the oversighting of operational performance, message content and standards development and compliance should also be independently oversighted in order to speedily sort out the inevitable record errors as they occur.

Our presentation to our Parliamentary inquiry into Cyber Security for Australian Senior Citizens expressed concern of the great risk posed by the probable extension of identity fraud to medical record related e-communications.

 

Standards

An eHealth Network operation requires a separate but compatible set of standards to suit the individual established requirements of each of the four collaborating industry sectors: Governments, Service Providers, Consumers and Vendors to suit their distinct pattern of procedures and their interoperability. As stated earlier this will require independent administration working through a body providing cross industry co-operating representatives in a traditional standards setting mode as developed over many years by the Australian Standards Association.

 

Target audience

All parties seem to agree that Health Servicing of the Community fits the pattern generally referred to as the 80/20 rule. The major incidence of Health Servicing events derives from approximately 20% of the population. The cost of providing the required service to them is 80% of the total cost.

The initial target audiences chosen in the Australian Project seem to have taken note of this 80/20 rule;

a)       New Born

b)       Aged Care / Chronic Illness / Disabilities / Mental Illness

We support this decision because:

a)    The New Born present a unified group whose normal procedures and health aspects have been well managed and substantially standardised over a long period through a co-ordinated Baby Health System in each State and Territory.

A quality manual baby Health Record has been in operation for many years and its trial conversion to an electronic format conforming with the KISS principle – “keep it simple”. We understand that work on a “blue book” is progressing.

b)    Aged Care comprises a large base across the population in Aged Care facilities many of which are in need of upgrading in many respects.

This can be addressed in a relatively standard way and aligns with a complementary Federal Budget Drive to fund and achieve such required improvements in conjunction with State and Territory responsibilities.

The Aged Care facilities are substantially operated by NGO operators. There is considerable scope to address the lifestyle and well-being issues which could improve personal enjoyment and would also likely reduce need for continual expensive hospital re-admissions.  This needs proficient integration and collaboration by the service providers.

The work in this area could obviously flow on into the other 80/20 category groups eg. Chronic illness, Disabilities and Mental Health.

E-Health could assist in achieving benefits in both service quality and cost and so is to be welcomed.

It is pleasing that the Aged care NGO Consumer Groups and the private facility providers and the Government are well advanced towards a positive drive for using an EHR to improve Health Services in these areas.

c)    However the vital requirement for communication, cooperation, collaboration and coordination whilst generally recognised in principle the need for such principles to be orchestrated within a practical governance structure as required by the recommendation in the Health Online report has not been implemented.

 

Population Health

CeHA continues to be strong supporters of the advantages to be gained in population Health Programs by developing Electronic Event Registries covering major mishaps  or danger  areas as soon as practical even in an elementary initial format.

Apparent priority areas for increased attention and reporting thereof:

d)    Medication Management

e)    Incidence of Falls (particularly the Aged)

f)     Surgery Mishaps

g)    Return to hospital (quality of discharge reporting)

h)    Incidence of infections in hospitals etc.

i)      Chronic illnesses

j)      Lifestyle / Wellness issues and localised population Health incidence

In summary we consider the need to require that each person in the targeted audience is to have a personal care plan designed by each person’s multi – disciplinary care team / principal service co-ordinator and accepted by the patient / carer.

 

Information research priorities

Evidence obtained through the analysis of de-identified information could inform and guide the development of research priorities and in particular, further develop translational research techniques for grant funded projects to ensure improved benefits flow onto the patient community.

The above list of issues is not exhaustive but highlights the key ones of concern to patients. These have been identified and highlighted by CeHA in opportunities we have had to present to Government bodies, inquiries and Government appointed consultants.