Thursday, May 16, 2013

Article Draft - It Seems This E-Health Business I Much Harder Than We All Thought. We May Need A Fundamentally Different Approach.

I was lucky to be asked to spend a couple of hours with a team of academics from Australia and the U.K. to explore some of the issues around the implementation of centralised National E-Health Systems  around the world - with a special focus on the U.K., Canada, New Zealand, the U.S. and Australia a little while ago.
I found it very interesting that as the conversation progressed that despite the difference in starting perspectives that the conclusions reached and the perceptions of what was needed seemed to be remarkably aligned and similar.
It was pretty clear from our conversation, and my own research, that there were very few, if any, top down public sector national systems that has not either failed or seemed to be heading that way. Interestingly the reasons seemed in most cases to be quite similar and to revolve around issues of the lack of any compelling value being offered by the proposed system to those who were the intended users, a considerable rigidity in approach from Government with a very much ‘one size fits all’, often rather politically driven and unrealistic and short timelines, lack of genuine clinician involvement, a failure to distinguish between and IT project and a clinical project as well as investment decisions being made on the basis of so-called ‘business cases’ which grossly exaggerated the potential benefits and typically substantially underestimated the costs that would finally be incurred.
In the broadest of terms there seemed to be agreement that if benefits were to be obtained for a National Health System through the deployment of Health IT that the strategy that would most likely be successful would involve the following:
1. Focus of the absolute basics - key GP and Specialist system capabilities along with secure communications between GPs, Specialists, Pharmacies, Hospitals, Allied Health and Service Providers (Labs, Imaging etc.)
2. Sticking to proven and well understood technical Standards. Health care at an operational level should not be operating at the ‘bleeding edge’!
3. Initially working at a scale that was manageable and where delivery can be assured. I feel that a size of the old Divisions of GP or Medicare Locals (as they now are) seems about the right way to develop and plan a project roll out.
If these information flows can initially be established at a very simple document level and are working well there will be clear benefits to all parties in the information exchange and - assuming national Standards are used appropriately progressive scale up of solid, working Health Information Exchange would be easily possible.
An obvious step here would be to adopt the Clinical Care Record (CCR) Standard or similar to provide an information header that would assist with care co-ordination as it constitutes an valuable summary of health status and problems.
Equally, as the systems were fully bedded down and operational, the information content of the content of the messages can be improved and made richer to provide greater clinical and patient benefit.
With all that working consideration can then be given to developing improved access for patients to their information should they want it and improved services for patients interacting with their clinicians. Progress in such a structured way offers the best chance for really positive and useful outcomes for both clinicians and patients.
To have all this work well the only support required at a national level is the provision of three key infrastructural elements. There are:
1. A Health Identifier Service - so it is possible to safely join pieces of information from different sources for the same patient.
2. An End Point Location Service to allow messages to be directed to the correct recipients. (These presently exist and work well at more local levels)
3. A properly led, funded and governed Standards setting mechanism at a national level.
To me having these basics properly implemented and used is where most of the ‘pay-dirt’ is for all involved. Interestingly all this can be done using proven and established technology and systems.
To move forward from here we need to really start to think how we can address the second issue that was a major topic of conversation. This is the issue of the astonishing complexity of representing clinical information and clinical thought processes in computerised form. This issue is a real sleeper in much e-health research because as anyone tries to move forward to better define clinical knowledge they soon realise the limitations of both language and the available coding systems  to express and capture clinical thought processes and to structure and represent such concepts reproducibly. The semantics of clinical information turns out to be really very complex indeed.
The fact that complex messaging standards such as the full version of HL7 Version 3.0 and Clinical Terminologies such as SNOMED-CT are still works in progress tens of years after work began is a testament to this truth that capturing semantics and clinical knowledge  is actually very hard indeed!
If you want a taste just how hard all this is - I suggest exploring this project web site from a few years back.
Work Package 6.1 written by Professor Alan Rector of Manchester University is especially enlightening.
A plea, from the trenches, to all bureaucrats and Governments is to accept the big picture internationally and recognise and that large centralised systems are especially a career limiting and wasteful plan while a focus on doing the bottom up basics (as has been done pretty well in New Zealand) is a much better path for reduced cost, patient benefit and safety, clinician satisfaction and career longevity.
Comments Welcome.


Brett Esler said...

David, can you name names with these opinions? I would be interested in hearing from those 'on the record' endorsing a more regional approach.

Dr David More MB PhD FACHI said...


The regional standards approach is mine largely, with my friends thinking the National Approaches seemed to clearly be too large. I think you will find the U.S also has this view - except at the Standards and High Level Strategy Levels.

We all agreed picking the right size scale is part of the trick to get success!

No, I won't be naming names as these are my interpretations - not really quotes!


Anonymous said...

"To have all this work well the only support required at a national level is the provision of three key infrastructural elements."

DOHA/NEHTA report card:

1. A Health Identifier Service - Yes (at a cost of at least $135m)
2. An End Point Location Service - No
3. Standards - An increasingly corrupt standards setting process that has been hijacked by NEHTA and DOHA to serve their own agenda.

Overall result = Fail.



Tom Bowden said...

Hi there,

While relentless self promotion is always a bit unattractive, I couldn't resist putting in a word to support your comments about the benefits of the NZ model HIT David.

We have:
- focused on supporting day to day patient care
- by and large resisted building centralised structures (a few have slipped through)
- achieved steady progress over a 20 year history..

Today an average general practice communicates electronically with 72 other organisations every month and we have widespread use of advanced systems such as online hospital referrals and emergency care summary record access.

Evolution not revolution has been key to the progress we have made.

- Develop pragmatic readily usable standards
- devolve to state based operations
- encourage private sector involvement within a rigid ethical framework...

...would be a few of my immediate suggestions.

Kind regards,

Tom Bowden

Terry Hannan said...

David, These projects confirm that any successful national e-Health system must have the following functionalities: collaboration, scalability, flexibility, the facility for rapid form design (to allow clincians effective data entry), the uses of standards, web-based connectivity, low cost (preferably open-source and downloadable for free). Most importantly these e-health systems must be clinically useful i.e. if not used by clinicians implementation will not be successful. Clinicians are those most in need of data to assist clinical decision-making and for effective information management. If e-Health systems do not have this/these capacities/facilities they will/have failed. Sadly many e-health implementation project implemeters fail to read the "history" that demonstrate how cussess can occur. Your topic for discussion raies for me the whole idea relating to a "record" (a type of mental fixation on a structure). We need to be more outward looking at the total "information management" tasks to be resolved.
As stated in the WHO charter. "information (and its management) IS care". Terry Hannan

Trevor3130 said...

It's worth the time to have a look at Pharma's interest in Health IT. They put out PharmaTimes for the UK, but the current issue on data collection is very interesting.
From the piece by CSL's UK MD -
The “threat” of openness has been demonstrated by the public exposure of poor practice at the Mid Staffordshire Trust. And although it will drive up standards, there will still be voices cautioning against opening data.
At a less dramatic level there will be little control or regulation on what is done with the data. Analyses will be made and imperfect or wrong conclusions drawn. The press will trumpet and the public will be misled.