They Just Don't Get It - Personal Privacy does Matter

All in all it has been a very bad week for NSW Health IT. Both the major daily papers, The Sydney Morning Herald and The Australian have been running stories pointing out how a number of years of careful policy work related to the privacy of Shared Electronic Health Records has been swept aside - basically to meet a political time line for implementation of a trial EHR system - termed Health-E-Link.

It seems the NSW Minister for Health was persuaded that every one in the target population (citizens over 65 years living in the Hunter Region who visited local outpatient facilities) would love to to have their details available for sharing with any authorised practitioner on a compulsory basis. Later it was decided that once the details were collected the citizen would have 30 days to "opt-out" of record sharing. However the records are not deleted - merely made unavailable.

Even worse the clients of the system have no say in what will be captured - so the only way to avoid having a record established is not to attend the public services in the area.

Not surprisingly, many advocacy groups and other interested parties (dismissed as "privacy zealots" by the Minister, are less than impressed with this outcome, saying to a group we don't mind records but we want a strong say in who accesses these records and under what circumstances. They are also annoyed that the regulations to allow this information capture were slipped through quietly with no public consultation or announcement.

Just the other day a powerful coalition of privacy advocates enumerated what is required in the way of privacy for records to be made available for sharing between health practitioners.

The key points they itemised were put in the following terms:-

"We urge you to build a foundation for medical information technology that is based on the following longstanding ethical and privacy principles and protections:

• Restore the patient's right of consent
• Give patients the right to opt-out of having their records in any national or regional electronic health system
• Give patients the right to segregate their most sensitive medical records
• Require audit trails of all disclosures
• Deny employers access to medical records
• Require that patients be notified of all suspected or actual privacy breaches
• Preserve stronger privacy protections in state laws
• Enact meaningful enforcement and penalties for privacy violators"

All this is utterly reasonable and practical - and is what should be done - to ensure citizens are comfortable with shared records and these recommendation accord closely with what has been developed both in the UK and indeed for the Commonwealth under the HealthConnect banner.

Frankly NSW is a rogue state that will put the cause of health information sharing in Australia back decades unless a major policy about-face occurs. Those responsible for this should recognise they have made a grievous mistake and suspend the trial until proper reasonable controls can be put in place.

David

NEHTA Interoperability Framework - Version 1.0

Yesterday NEHTA released their Version 1.0 Interoperability Framework. At the highest level this document attempts to define how the actors in the Australian e-Health domain are intended to move towards interoperability.

The document is not for the faint-hearted as it is a complex piece of work written in a style that makes no concessions to the technical or health understanding of the audience (which is said to be senior people in the e-health community in Australia essentially).

It seems to me that the value of a document such as this needs to be assessed on the value it provides to its intended audience and the change it will justify and sponsor in e-Health activities in Australia.

I think it would be fair to say the reaction thus far has been along the lines of suggesting the paper is part of an R&D program and that only once more detail and guidance is provided will much value be delivered in the real world. When e-health software developers and vendors are asked "what will you do different tomorrow?" the answer seems to be universally "Nothing".

I have reviewed the document quite carefully and my comments are as follows:

1. This is clearly a "work in progress" and should not be considered in any way final or to be offering firm guidance - consultations on its impact are still to happen with NEHTA's owners.

2. The document as it presently exists does not review available options to many of its recommendations or explain the basis for its selections.

3. The document admits much of its basis is unproven and may not be available for 3-5 years - adoption of the "bleeding edge" approaches is not wise in a sector as conservative as Health I believe. It is possible the keenness for SOA may pass as implementation experience is gained in large complex environments.

4. The proposed standards catalogue does not have scope to hold the full range of available standards that may address a topic and explain the reasons for selection of the preferred ones and at what point such preferences may be reviewed.

5. The theoretical approach adopted and the time frames suggested do not really confront the urgent need for technology to enable Health System Reform as soon as possible.

6. It is, again, not clear, just what is the strategic and requirements context in which this document was developed. There is discussion of development of undefined NEHTA solutions and this must be a cause for concern given the track record of NEHTA like organisations in the software development area.

7. It is by no means clear just what is planned to fall under the influence of this framework - given that at present it is far to vague for any practical implementation.

8. Given legacy systems can last 10+ years in this sector - it is vital to know how these are to be dealt with and have this provided in a route-map provided for all to review and discuss.

9. Yet again archetypes are cited as a good thing - but yet again there is no explanation of how the required information infrastructure is to be developed and managed.

All in all I don't believe this document adds much that is useful to progress in e-Health in Australia. It would have been better to have a much broader consultative process before Version 1.0 was reached so at least some of the issues I and others have raised could have been addressed.

David

Is E-Health Getting Harder?

Today's post has been provoked by my having been sent a report into an e-health conference which was conducted in mid September 2004 in Sydney and which brought together many luminaries in the field. The tone of the meeting was quite optimistic but, while all the important issues were raised (privacy, change management etc), it seemed there was considerable confidence that success was just around the corner - and that by the end of 2005 concrete outcomes would be clearly demonstrable. Further optimism flowed from the fact that NEHTA had recently been established and that this would quickly make an impact in the standards area.

Eighteen months later we seem to have stalled in some important ways.

Firstly the time frame to get basic delivery of the management of the identify of providers and consumers has slipped to the end of 2007 and we have seen that it is now clear development of the required extensions for SNOMED-CT (covering medications, devices and some other areas) is also going to take until 2007.

To date the details of how each of these will be achieved has not been made public so it is hard to know just how high the likelihood of success is.

Internationally it has also become obvious that progress is slower than may have been hoped for. Examples include the delays now being experienced in the well resourced Connecting for Health Initiative in the UK, the slowness with which progress is being made to finalise both HL7 V3.0 and the ISO/CEN EN13606.

It seems intrinsically many major initiatives are more challenging than they initially appear. For this reason the start small and develop at a pace that all can accept is increasingly appearing to be better and better advice.

It is interesting that an article expressing a similar sentiment appeared very recently on the US Modern Medicine website entitled "Dr. McCoy to sickbay: Not 'stat' but with all deliberate speed".

It seems to me we need to select some important do-able goals, get them done, and then take the next step - remembering that in 2006 it is the human and cultural issues that will give the most trouble - not the technical ones.

David

A Government Mouthpiece

On Monday I was "lucky" enough to listen in on the first two hours of the NEHTA 2006 Vendor Forum. On the whole I felt that NEHTA provided little evidence that they had mastered the complexity of Health IT and, sadly as expected by now, they still did not unveil a coherent e-health strategy that could put their initiatives in a comprehensible format.

The whole day was sprinkled through with flavours of Web Services and its bigger brother Service Orientated Architectures (SOA). While the slides were colourful, what was not made clear is that Web Services and SOA are both still very much works in progress and still having much of their implementation complexity worked out. I think it is rather early in the 'hype cycle' to hitch Australia's e-health future to these, as yet, unproven technological approaches. Time will tell, but another false architectural start - like HealthConnect - would be a very bad thing.

The worst aspect of the day was a speech given by a DoHA representative who should have known better given his background. His argument was based on the premise that because it is not possible to work out how to distribute the benefits from Health IT between governments, consumers and providers each should fund their own infrastructure. This is facile in the extreme. It is well known that the majority of benefits flow to the payers (Government in our case) and consumers and that most of the costs are incurred by the providers. If there is not a policy response to this stark fact nothing will happen - as has largely been the case to-date.

The only reason any competent bureaucrat would assert otherwise has to be because they have been told there will be no money and they need to put the best spin possible on a sad situation.

It will be interesting when the NEHTA Benefits Realisation Project identifies the truth. I wonder where DoHA will hide then?

David

An Australian e-Health Strategy – Why, What and What Could It Achieve?

It seems your humble commentator has been ruffling the feathers of the great and powerful in the e-Health domain. I say this not because anything negative has happened but rather that some of my suggestions appear to be causing at least a minor response. It could be, however, that I am just an optimist and the improved information flows and so on were going to happen anyway. No matter, it is all to the good. Well done NEHTA.

The central issue in e-health as I see it is that Australia has not developed, articulated, discussed and agreed a National e-Health Strategy, which brings together all the work being undertaken around the country, assembles it into some sort of coherent whole and provides forward direction and leadership for all involved. In response to the apparent movement from NEHTA I want here to expand my arguments and suggest just what the National Strategy I am proposing may look like.

Before doing that I must answer the “why do we need one?” question. This is easy. Without a plan in virtually every walk of life there is a tendency to see a lack of progress, waste of resources and repeated false starts. The reason this sounds familiar is that this accurately describes the National progress in the e-Health domain. As a colleague so delightfully puts it – all we have seen is largely ‘Brownian Motion’ with no solid progress in any direction. In large projects, such as National e-Health, even with a plan progress can be difficult and slow, but without one failure is inevitable. The second reason we need a plan in my view is that we humans work best and contribute most if the goals and objectives are clear – hence the need not only for a plan, but for it to be publicly articulated and communicated.

On the basis that we need the plan, what should it contain and what factors and constraints should it consider.

Before anything is done the first step is to ensure it makes sense to proceed with planning. This is done by developing a generalised Business Case for National e-Health implementation. If overseas experience is any guide this will confirm the need for action and a plan.

What is involved in doing a plan? The first thing the National Strategy needs is a current view of just what is going on everywhere, and what is working well and needs to be preserved and encouraged. Next, once we have worked out where we are we need to work out where we need to be. This will involve a lot of consultation with all interested stakeholders to develop a vision of future Health Service delivery and then ensure we can put in place the technology to make it work. Fortunately there has been a lot of work done on the desired future state of the Health System and this can be utilised to guide the planning of the supporting technology initiatives.

Out of the requirements and consultative process there should emerge a number of options reflecting the use of different technical approaches, different priorities, different levels of preparedness to invest and so on. These will ideally be worked up into three or four roadmaps and then a second consultative process with stakeholders and the public will choose the most appropriate. This roadmap will then be worked up, in detail, and all the implications for consumers, professionals and others, risks, costs and so on thought through.

At this point there will exist both a clear reason for action and agreement at a high level as to what direction should be taken.

What might an overall strategy look like. The objectives and mission are easy. What we want from technology is better co-ordination of care (only answer questions once, don’t fall between the system’s cracks etc), greater safety with relevant knowledge provided to carers at the point of care, greater efficiency of service delivery at all levels and ideally our own little personal health record that has all our health information securely stored so that when needed it can be made available to those who need it – our doctor, nurse or who ever.

What technologies and systems do we need? Essentially there are five.

First all our hospitals need clinically rich and administratively effective internal systems that enhance patient safety and operational efficiency. These you can buy off the shelf from a range of Australian and overseas vendors – (IBA, Cerner, etc). These need to be advanced systems that provide excellent care documentation and physician order entry with advanced decision support.

Second our GPs and Specialists need similarly effective systems which manage all aspects of our care electronically and can receive and transmit information (referrals, prescriptions, test requests etc) securely and safely. These can be obtained reasonably cheaply but ideal ones are still a little way off.

Thirdly we need service providers (Specialists, Laboratories, Radiological Practices, Pharmacists etc) to provide their product (i.e. reports etc) electronically. Systems to do all of this are available off the shelf.

Fourthly we need in place a secure set of message standards to allow the information to flow where it needs to go safely and privately. These exist in simple form and are improving quite quickly.

Lastly we need some Standards to ensure all information that flows can be properly and reliably linked to the individual it relates to and contains information in a form that can be properly actioned by the receiving system. These largely exist today

With some will, and a rational funding plan that pays those who create the information that is of benefit to those who get to use it, implementation need take no longer than three to four years. The Implementation Plan will need to adopt a simple, walk before you run, bottom up style but is eminently doable for reasonable cost given the potential benefits.

There will be some issues with integration with previous initiatives but there is nothing that is not doable in all this, other than the need to have a plan and the will and resources to execute it.

What could this achieve? The answer has not yet been fully worked out but if the experience overseas is any guide savings of 5-10% of the health budget and a considerable reduction in clinical errors of all sorts is well within our grasp. We should stop talking about it and get on with it!

(Please note - for the expert readers - this commentary is very high level and lacks detail - but I am convinced it is basically sound - comments welcome!)

David

NEHTA and Benefits Realisation

It is an excellent move for NEHTA to start thinking about how benefits are to be realised from investments in Health IT. They have just released a short paper describing their plans for the next 12 months and, knowing the background of the project leader, they will get a good job done.

There is only one fly in the ointment. No matter who is assessing benefits opportunities they need to be clear as to what strategic implementation plan it is they are assessing the benefits of!

One can only hope that very soon NEHTA takes us all into their confidence and lets us know just what this plan is and what it involves.

Only with that done, and a costing of the strategy planned developed, will the first step of my master plan for e-health be underway, i.e. the development of a national business case that can mobilise government and public support.

We will all be watching NEHTA closely over the next few weeks to see what comes.

David

The Slow Demise of Health-E-Link

Its been another bad day for e-Health In Australia.

Today we learned that the NSW HealthConnect Trial for NSW - the Health-E-Link project is coming apart for the most basic of reasons - the lack of proper involvement and consultation of healthcare providers and consumers.

It seems that NSW Health has been so keen to get the project operational they have altered NSW Health Information Privacy regulations - to the annoyance of many who are interested in the issue - and have also failed to sign up the local doctors before attempting to 'go live'.

This is very sad as the project has cost a lot of money and was probably the best resourced of all these so called 'trials'.

Again it seems the bureaucracy has not understood the basic tenets of the management of complex change.

The losers, as always, are the Australian public, who deserve a great deal better.

David

Reaction to the NEHTA Standards Framework

It has been quite interesting to see the various reactions to the recently published NEHTA Standards Framework.

Some were very positive hoping to see much improvement in the timeliness and responsiveness of the e-health standardisation process and looking forward to more input from the relevant interests and stakeholders.

One correspondent made the very useful suggestion that it would be very valuable if technology was used to facilitate standards development and to make the processes more transparent and clear. A suggestion I heartily endorse - pity it was not a specific action point in the framework.

Mostly, however, there seemed to be disappointment about the lack of specific clarity in the action plan and the funding plans. One correspondent repeatedly muttered - "just a marketing doco with no real content".

Amusingly there has been fun when another correspondent pointed out in the GP e-mail list that the spelling standard for the document was confused and rather US like (or may be mid-pacific) with the use of centre and center occurring. I wonder what language standard was intended . The document also seems to be from the far future with the following "Copyright © 20066, NEHTA." being noted. An omen?

The total proof of all this will be, however, where e-health standards are in 12 months.

We will all watch with interest.

Cheers

David