Just a short entry to wish all the readers of this blog compliments of the season and all the very best for 2007. I hope we can see some real progress next year!
I plan a week off to consider some of the more complex issues and also to review some papers for Medinfo 2007.
Early next year I plan articles covering
• Personal Health Records
• The Opportunity Costs of not Implementing E-Health
• Shared Electronic Health Records – How can They Be Made to Work?
• NEHTA's Pre Christmas Document Releases – Do they Add Anything Useful?
• The IHI And the Access Card – What Total Policy Overlap and Stupidity.
See you in 2007!
David.
This blog is totally independent, unpaid and has only three major objectives.
The first is to inform readers of news and happenings in the e-Health domain, both here in Australia and world-wide.
The second is to provide commentary on e-Health in Australia and to foster improvement where I can.
The third is to encourage discussion of the matters raised in the blog so hopefully readers can get a balanced view of what is really happening and what successes are being achieved.
Quote Of The Year
Timeless Quotes - Sadly The Late Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"
or
H. L. Mencken - "For every complex problem there is an answer that is clear, simple, and wrong."
Sunday, December 24, 2006
Happy Christmas and A Successful New Year to All.
Thursday, December 21, 2006
NEHTA’s Contraction of Scope and Role – What does it Mean?
All of a sudden there has been an outbreak of discussion in the GP_TALK e-mail discussion list regarding the role, scope and purpose of the National E-Health Transition Authority (NEHTA).
The discussion was prompted by a correspondent asking - is NEHTA meant to be an Authority that ‘manages a transition’ (e.g. to much wider deployment of E-Health) or is it a ‘transition authority’ which is to be replaced by another authority when its job is done (in 2009 or so).
The official view – from the main Government entry point is not hard to find.
http://www.australia.gov.au/405
“National E-Health Transition Authority
The National E-Health Transition Authority (NEHTA) has been established to accelerate the adoption of e-health by supporting the process of reform in the Australian health sector. To enable this to occur NEHTA will develop the specifications, standards and infrastructure necessary for an interconnected health sector. The development of the foundations for widespread adoption of e-health is NEHTA's core mission. www.nehta.gov.au “
However NEHTA seems to have moved away from this – now saying on its home page (dated September 2006):
“Welcome to NEHTA Limited, a not-for-profit company established by the Australian, State and Territory governments to develop better ways of electronically collecting and securely exchanging health information.
Electronic health information (or e-health) systems that can securely and efficiently exchange data can significantly improve how important clinical and administrative information is communicated between healthcare professionals. As a result, e-health systems have the potential to unlock substantially greater quality, safety and efficiency benefits.”
And that their “website outlines the work that is being done by NEHTA to deliver a secure, interoperable e-health environment.”
The key difference is a much narrower role focussed on facilitation and enabling rather than direct intervention and support. It seems that NEHTA no longer sees itself as having a direct role in accelerating the adoption and use of Health IT, and also that NEHTA perceives it has no direct infrastructure or implementation role. Clearly, NEHTA sees these roles as being for someone else! (This view is supported in the recent “Privacy Blueprint” where there is much discussion of what sort of entity will deliver identity services – making it clear it won’t be NEHTA).
This view also fits with the NEHTA work-plan which focuses on developing services for provider and individual identification and for clinical terminology which will be used by other systems. NEHTA also says it is developing specifications for Shared Interoperable Electronic Health Records although it seems this work has progressed little in the last year as nothing significant has been published recently in this area that I can find.
This is most likely because similar initiatives overseas (UK and Canada) have hit quite difficult times and the levels of complexity in developing such shared records are becoming much better understood (I plan an article on this topic in due course).
The change in emphasis is of very considerable concern.
The reason for the concern is that with the establishment of NEHTA a lot of planned activity by both State Governments and the private health IT sector was put on hold, awaiting NEHTA guidance, support and direction.
It now seems this is not going to come promptly or the strategic way expected and with the HealthConnect program in mothballs (if not formally dead) NEHTA has now become a “dead hand” on innovation and progress in e-health in Australia.
In the last few days I have been approached by and chatted to both academics and industry players involved in secure messaging, software development, standards development, e-Health consulting and supply chain reform. All are concerned at the loss of momentum, lack of communication and strategic uncertainty.
What needs to be done to ensure there is a crystal clear understanding by all stakeholders of what NEHTA is actually now planning? NEHTA must urgently and clearly articulate just what it will deliver and by when and more importantly what it will not or cannot do and leave innovation and progress to others.
The problem we all now face is that, with the inertia and confusion that has now been engendered by NEHTA’s changes in emphasis, it may take some time for effective leadership to re-emerge. One can only hope the revamped AHIC can provide the needed strategic leadership and rapidly regain some much needed momentum.
David.
The discussion was prompted by a correspondent asking - is NEHTA meant to be an Authority that ‘manages a transition’ (e.g. to much wider deployment of E-Health) or is it a ‘transition authority’ which is to be replaced by another authority when its job is done (in 2009 or so).
The official view – from the main Government entry point is not hard to find.
http://www.australia.gov.au/405
“National E-Health Transition Authority
The National E-Health Transition Authority (NEHTA) has been established to accelerate the adoption of e-health by supporting the process of reform in the Australian health sector. To enable this to occur NEHTA will develop the specifications, standards and infrastructure necessary for an interconnected health sector. The development of the foundations for widespread adoption of e-health is NEHTA's core mission. www.nehta.gov.au “
However NEHTA seems to have moved away from this – now saying on its home page (dated September 2006):
“Welcome to NEHTA Limited, a not-for-profit company established by the Australian, State and Territory governments to develop better ways of electronically collecting and securely exchanging health information.
Electronic health information (or e-health) systems that can securely and efficiently exchange data can significantly improve how important clinical and administrative information is communicated between healthcare professionals. As a result, e-health systems have the potential to unlock substantially greater quality, safety and efficiency benefits.”
And that their “website outlines the work that is being done by NEHTA to deliver a secure, interoperable e-health environment.”
The key difference is a much narrower role focussed on facilitation and enabling rather than direct intervention and support. It seems that NEHTA no longer sees itself as having a direct role in accelerating the adoption and use of Health IT, and also that NEHTA perceives it has no direct infrastructure or implementation role. Clearly, NEHTA sees these roles as being for someone else! (This view is supported in the recent “Privacy Blueprint” where there is much discussion of what sort of entity will deliver identity services – making it clear it won’t be NEHTA).
This view also fits with the NEHTA work-plan which focuses on developing services for provider and individual identification and for clinical terminology which will be used by other systems. NEHTA also says it is developing specifications for Shared Interoperable Electronic Health Records although it seems this work has progressed little in the last year as nothing significant has been published recently in this area that I can find.
This is most likely because similar initiatives overseas (UK and Canada) have hit quite difficult times and the levels of complexity in developing such shared records are becoming much better understood (I plan an article on this topic in due course).
The change in emphasis is of very considerable concern.
The reason for the concern is that with the establishment of NEHTA a lot of planned activity by both State Governments and the private health IT sector was put on hold, awaiting NEHTA guidance, support and direction.
It now seems this is not going to come promptly or the strategic way expected and with the HealthConnect program in mothballs (if not formally dead) NEHTA has now become a “dead hand” on innovation and progress in e-health in Australia.
In the last few days I have been approached by and chatted to both academics and industry players involved in secure messaging, software development, standards development, e-Health consulting and supply chain reform. All are concerned at the loss of momentum, lack of communication and strategic uncertainty.
What needs to be done to ensure there is a crystal clear understanding by all stakeholders of what NEHTA is actually now planning? NEHTA must urgently and clearly articulate just what it will deliver and by when and more importantly what it will not or cannot do and leave innovation and progress to others.
The problem we all now face is that, with the inertia and confusion that has now been engendered by NEHTA’s changes in emphasis, it may take some time for effective leadership to re-emerge. One can only hope the revamped AHIC can provide the needed strategic leadership and rapidly regain some much needed momentum.
David.
Tuesday, December 19, 2006
Australian Health Information Council Resuscitated – What Should Be on the Agenda?
I am told that the Australian Health Information Council – the new and resuscitated version is to have its first meeting in February 2007.
I am also told the new chair is Professor James A Angus, BSc (Syd.) PhD (Syd.) FAA, Dean, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne. It seems Professor Angus is a very distinguished Australian pharmacologist with an interest in all sorts of receptor classes. His biography does not mention any clinical experience or health information technology background.
I am not sure whether congratulations or commiserations are appropriate for Professor Angus – time will tell I guess! (At present I have not seen an official announcement so this may be wrong in whole or in part.)
What would I want to see addressed at the first few meetings? The following, in priority order, are what I would (gratuitously) suggest.
1. The first meeting needs to work out how many seats should be around the table and who should occupy them. There is an embedded clique, I believe, of government committee attendees in this domain, many of whom have led the E-Health agenda for the last 15 years. As progress has been less than stellar it is not inappropriate to suggest that perhaps a transfusion with some new blood would be advisable. While some old blood should be maintained for corporate memory etc – at least half of the committee should have never been involved in the old AHIC or any of the committees that report to it. Perhaps it would be sensible if the Chair initially enrolled a foundation core of three or four independent experts to consider the issue of subsequent enrolments.
There should also be minimal, if any, crossover of membership between the NEHTA board and AHIC.
2. The reporting lines and governance of AHIC should be such that it is genuinely independent and is able to provide quality strategic advice to Ministers unfiltered by any external influences.
3. The new committee needs to make sure it has the resources and the independence to get things done – this means a real and tangible budget and a competent, dedicated, expert secretariat. There must no part-time bureaucrats who battle through. Ideally there should be a staff of three or four real experts to advise and assist. If it is not clear this will happen prospective committee members should just walk away in my view.
4. The new committee should closely review the terms of reference. These were watered down in November 2005 from the original 2003 version to read:
“Set up by Health Ministers in July 2003, AHIC works closely with the National Health Information Group to increase the effectiveness of IT investment in the health sector.
The revised operating arrangements for AHIC are based on an independent review of the Council commissioned by the Australian Government. These arrangements will enable AHIC to focus on providing strategic advice to Health Ministers about the more effective and efficient use of information management and information communications technology (IM&ICT) in the health sector.”
I would suggest the following terms of reference for the revamped AHIC.
A. To promptly review the progress and current status of E-Health in Australia (E-Health being broadly defined as the use of ICT in the health sector – and especially in Health Service Delivery) and benchmark and evaluate it against progress in the rest of the OECD.
This review should be of strategic and major operational systems only – not every isolated trial system in the first instance.
B. To develop a National E-Health Strategic Plan, Business Case and Implementation Plan, for presentation to and funding by Ministers within 12 months of the February 2007 meeting.
This plan needs to reflect the Health Service business drivers. These include efficiency and effectiveness of the health system, patient safety, quality of care, public health monitoring and reporting, clinician job satisfaction and retention and so on.
Issues of use and adoption of Health IT and aspects of security and privacy will also be critical to address.
Any plan must also be practically focussed and based on proven technology. It must embrace the use of standards which can be demonstrably implemented and which meet health system requirements. Benefits which flow from implementations should be focused on those who actually use the systems, not those who would like a free ride from the ‘uncompensated’ efforts of the ‘users’. This probably means introducing meaningful financial incentives for some stakeholders.
C. To advocate with all appropriate stakeholders the importance of planned, consultative action in the E-Health space.
D. To work with the Jurisdictions, the IT Industry and the Private Health Sector to obtain predefined optimal national E-Health outcomes.
E. To ensure NEHTA’s plans and directions are brought into alignment with the National E-Health Agenda and that NEHTA’s resources are focussed where the majority of CLINICAL and PATIENT benefits are to be found.
After this has been achieved I would be more than happy to let AHIC develop the rest of its agenda itself – but the members may want a long, well earned rest!
David.
I am also told the new chair is Professor James A Angus, BSc (Syd.) PhD (Syd.) FAA, Dean, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne. It seems Professor Angus is a very distinguished Australian pharmacologist with an interest in all sorts of receptor classes. His biography does not mention any clinical experience or health information technology background.
I am not sure whether congratulations or commiserations are appropriate for Professor Angus – time will tell I guess! (At present I have not seen an official announcement so this may be wrong in whole or in part.)
What would I want to see addressed at the first few meetings? The following, in priority order, are what I would (gratuitously) suggest.
1. The first meeting needs to work out how many seats should be around the table and who should occupy them. There is an embedded clique, I believe, of government committee attendees in this domain, many of whom have led the E-Health agenda for the last 15 years. As progress has been less than stellar it is not inappropriate to suggest that perhaps a transfusion with some new blood would be advisable. While some old blood should be maintained for corporate memory etc – at least half of the committee should have never been involved in the old AHIC or any of the committees that report to it. Perhaps it would be sensible if the Chair initially enrolled a foundation core of three or four independent experts to consider the issue of subsequent enrolments.
There should also be minimal, if any, crossover of membership between the NEHTA board and AHIC.
2. The reporting lines and governance of AHIC should be such that it is genuinely independent and is able to provide quality strategic advice to Ministers unfiltered by any external influences.
3. The new committee needs to make sure it has the resources and the independence to get things done – this means a real and tangible budget and a competent, dedicated, expert secretariat. There must no part-time bureaucrats who battle through. Ideally there should be a staff of three or four real experts to advise and assist. If it is not clear this will happen prospective committee members should just walk away in my view.
4. The new committee should closely review the terms of reference. These were watered down in November 2005 from the original 2003 version to read:
“Set up by Health Ministers in July 2003, AHIC works closely with the National Health Information Group to increase the effectiveness of IT investment in the health sector.
The revised operating arrangements for AHIC are based on an independent review of the Council commissioned by the Australian Government. These arrangements will enable AHIC to focus on providing strategic advice to Health Ministers about the more effective and efficient use of information management and information communications technology (IM&ICT) in the health sector.”
I would suggest the following terms of reference for the revamped AHIC.
A. To promptly review the progress and current status of E-Health in Australia (E-Health being broadly defined as the use of ICT in the health sector – and especially in Health Service Delivery) and benchmark and evaluate it against progress in the rest of the OECD.
This review should be of strategic and major operational systems only – not every isolated trial system in the first instance.
B. To develop a National E-Health Strategic Plan, Business Case and Implementation Plan, for presentation to and funding by Ministers within 12 months of the February 2007 meeting.
This plan needs to reflect the Health Service business drivers. These include efficiency and effectiveness of the health system, patient safety, quality of care, public health monitoring and reporting, clinician job satisfaction and retention and so on.
Issues of use and adoption of Health IT and aspects of security and privacy will also be critical to address.
Any plan must also be practically focussed and based on proven technology. It must embrace the use of standards which can be demonstrably implemented and which meet health system requirements. Benefits which flow from implementations should be focused on those who actually use the systems, not those who would like a free ride from the ‘uncompensated’ efforts of the ‘users’. This probably means introducing meaningful financial incentives for some stakeholders.
C. To advocate with all appropriate stakeholders the importance of planned, consultative action in the E-Health space.
D. To work with the Jurisdictions, the IT Industry and the Private Health Sector to obtain predefined optimal national E-Health outcomes.
E. To ensure NEHTA’s plans and directions are brought into alignment with the National E-Health Agenda and that NEHTA’s resources are focussed where the majority of CLINICAL and PATIENT benefits are to be found.
After this has been achieved I would be more than happy to let AHIC develop the rest of its agenda itself – but the members may want a long, well earned rest!
David.
Sunday, December 17, 2006
Are The Wheels Coming off in the UK NHS Health IT Program?
It has been clear for some time now that the English National Health Service (NHS) National Program for Information Technology (NPfIT) has been meeting a range of difficulties.
The initial vision was that, with the expenditure of approximately 4% of the NHS budget on IT, it would be possible to create a national E-Health environment that would provide a major improvement to the quality and safety of care both in the ambulatory and hospital environments over a period of about a decade and that this investment would support the dramatic re-shaping and modernisation of the NHS.
In concept a central data “spine” was to be developed which had a range of common services and which used common Informatics Standards (HL7 V3.0, SNOMED CT etc) and standardised products from a range of hospital and ambulatory care vendors to create and maintain a spine based shared Electronic Health Record for all UK citizens. The project was huge, involving expenditure of $A30 Billion over the decade.
The whole thing is one of the most ambitious public IT projects ever undertaken anywhere in world.
Two recent events have prompted the present commentary. Before this there have also been major controversy regarding patient consent issues, the financial difficulties of a major technology provider (iSoft) and contractual difficulties and changes in providers as well as some key delays. This is said to have contributed to major morale problems and uncertainty.
The two recent events have been:
1. Lord Warner the health minister responsible for the £12.4bn NHS IT project is to retire at the end of the year. Lord Warner was a strong proponent of the NPfIT and his departure is undoubtedly a major blow to confidence.
2. The British Computer Society’s (BCS) Health Informatics Forum has produced a careful and generally critical strategic summary of the current state of play.
This report is available on line at:
http://www.bcs.org/server.php?show=ConWebDoc.8970
“Key recommendations of the report include:
• The provision of a business context for the English National Programme for Information Technology (NPfIT) at national and local level.
• A focus on local implementations at Trust and provider unit level, for example hospitals, diagnostic and treatment centres, community and mental health Trusts, practices. Providing specialty and service-based systems within provider units will encourage clinical involvement and give quicker benefits.
• There needs to be a major emphasis on standards to enable systems to interoperate effectively, rather than focusing on a few monolithic systems.
• The strategy should be evolutionary, building on what presently works and encouraging convergence to standards over time, rather than revolutionary.
• To adopt a truly patient-centred approach at the local health community level
• There are major issues about the sharing of electronic patient data which need to be resolved. These must not be hijacked by technical issues, and informed patient consent should be paramount.
• Transform NHS Connecting for Health (CfH) into an open partnership with NHS management, users, the informatics community, suppliers, patients and their carers, based on trust and respect.
• The clinical professions, NHS management and informaticians should collaborate to provide clear and comprehensive guidance for all sectors on good record keeping and data management – clinical and other, and embed this in undergraduate and post graduate training. The NHS should facilitate the take-up of this guidance.”
Interestingly the summary of the report also says “The NHS CfH programme can still make a massive contribution to safer and more appropriate patient care and remains in full agreement with the Wanless report that 4 per cent of NHS turnover should be spent on business-led informatics, according to the BCS Health Informatics Forum (BCSHIF) Strategic Panel.”
On these eight bullet points, above, I would offer the following commentary:
1. The length of time between the original strategy development in 1998 and the present has allowed alignment of the IT and business needs to drift. This is a major risk and the BCS report very correctly says it needs to be addressed.
2. The BCS recognises the need to get quality basics in place quickly – and this is very sound. People need to see success to believe further success is possible.
3. The BCS is keen on standards based interoperability. I have some reservations this is achievable in the short to medium term – but if a sensible messaging strategy is adopted there is very little downside. The detail of the report makes it clear the BCS understands the practical difficulties of implementation of some of the standards and that time may be required to get things right.
4. The suggested movement from a centrally controlled implementation model to a more collaborative approach is clearly very sensible – although how this can be done at a practical level will need to be thought through.
5. The move to a patient-centred approach at a local level is sound if what is intended is more patient control of their information. The detailed text makes it clear this general direction is supported.
6. The BCS Forum clearly understands the complex issues around information sharing, consent and the like and wisely suggests progress be dramatically slowed until practical and acceptable solutions are found and properly evaluated.
The report also is keen that initiatives around PACS, Choose and Book and GP Record Transfer (GP2GP) continue saying they seems to be working as are some of the central spine services (Patient ID etc).
Overall I think this is a very, very sound twenty pages that has many answers for the UK and also is a valuable document for Australian readers as well. I commend it to you.
The real risk is that central NHS bureaucrats will loose their nerve and funding for the program will dry up, rather than an appropriate review and continued support for a forward direction and continued investment. (There is a real likelihood this is what happened in Australia with HealthConnect)
Should this happen the “I told you so” pundits and the risk averse will have a “once in a generation” win and IT enabled healthcare delivery globally will be a major looser. I really hope those involved in the UK can work through all this.
David.
The initial vision was that, with the expenditure of approximately 4% of the NHS budget on IT, it would be possible to create a national E-Health environment that would provide a major improvement to the quality and safety of care both in the ambulatory and hospital environments over a period of about a decade and that this investment would support the dramatic re-shaping and modernisation of the NHS.
In concept a central data “spine” was to be developed which had a range of common services and which used common Informatics Standards (HL7 V3.0, SNOMED CT etc) and standardised products from a range of hospital and ambulatory care vendors to create and maintain a spine based shared Electronic Health Record for all UK citizens. The project was huge, involving expenditure of $A30 Billion over the decade.
The whole thing is one of the most ambitious public IT projects ever undertaken anywhere in world.
Two recent events have prompted the present commentary. Before this there have also been major controversy regarding patient consent issues, the financial difficulties of a major technology provider (iSoft) and contractual difficulties and changes in providers as well as some key delays. This is said to have contributed to major morale problems and uncertainty.
The two recent events have been:
1. Lord Warner the health minister responsible for the £12.4bn NHS IT project is to retire at the end of the year. Lord Warner was a strong proponent of the NPfIT and his departure is undoubtedly a major blow to confidence.
2. The British Computer Society’s (BCS) Health Informatics Forum has produced a careful and generally critical strategic summary of the current state of play.
This report is available on line at:
http://www.bcs.org/server.php?show=ConWebDoc.8970
“Key recommendations of the report include:
• The provision of a business context for the English National Programme for Information Technology (NPfIT) at national and local level.
• A focus on local implementations at Trust and provider unit level, for example hospitals, diagnostic and treatment centres, community and mental health Trusts, practices. Providing specialty and service-based systems within provider units will encourage clinical involvement and give quicker benefits.
• There needs to be a major emphasis on standards to enable systems to interoperate effectively, rather than focusing on a few monolithic systems.
• The strategy should be evolutionary, building on what presently works and encouraging convergence to standards over time, rather than revolutionary.
• To adopt a truly patient-centred approach at the local health community level
• There are major issues about the sharing of electronic patient data which need to be resolved. These must not be hijacked by technical issues, and informed patient consent should be paramount.
• Transform NHS Connecting for Health (CfH) into an open partnership with NHS management, users, the informatics community, suppliers, patients and their carers, based on trust and respect.
• The clinical professions, NHS management and informaticians should collaborate to provide clear and comprehensive guidance for all sectors on good record keeping and data management – clinical and other, and embed this in undergraduate and post graduate training. The NHS should facilitate the take-up of this guidance.”
Interestingly the summary of the report also says “The NHS CfH programme can still make a massive contribution to safer and more appropriate patient care and remains in full agreement with the Wanless report that 4 per cent of NHS turnover should be spent on business-led informatics, according to the BCS Health Informatics Forum (BCSHIF) Strategic Panel.”
On these eight bullet points, above, I would offer the following commentary:
1. The length of time between the original strategy development in 1998 and the present has allowed alignment of the IT and business needs to drift. This is a major risk and the BCS report very correctly says it needs to be addressed.
2. The BCS recognises the need to get quality basics in place quickly – and this is very sound. People need to see success to believe further success is possible.
3. The BCS is keen on standards based interoperability. I have some reservations this is achievable in the short to medium term – but if a sensible messaging strategy is adopted there is very little downside. The detail of the report makes it clear the BCS understands the practical difficulties of implementation of some of the standards and that time may be required to get things right.
4. The suggested movement from a centrally controlled implementation model to a more collaborative approach is clearly very sensible – although how this can be done at a practical level will need to be thought through.
5. The move to a patient-centred approach at a local level is sound if what is intended is more patient control of their information. The detailed text makes it clear this general direction is supported.
6. The BCS Forum clearly understands the complex issues around information sharing, consent and the like and wisely suggests progress be dramatically slowed until practical and acceptable solutions are found and properly evaluated.
The report also is keen that initiatives around PACS, Choose and Book and GP Record Transfer (GP2GP) continue saying they seems to be working as are some of the central spine services (Patient ID etc).
Overall I think this is a very, very sound twenty pages that has many answers for the UK and also is a valuable document for Australian readers as well. I commend it to you.
The real risk is that central NHS bureaucrats will loose their nerve and funding for the program will dry up, rather than an appropriate review and continued support for a forward direction and continued investment. (There is a real likelihood this is what happened in Australia with HealthConnect)
Should this happen the “I told you so” pundits and the risk averse will have a “once in a generation” win and IT enabled healthcare delivery globally will be a major looser. I really hope those involved in the UK can work through all this.
David.
Wednesday, December 13, 2006
Is SNOMED CT a Practical Usable Clinical Terminology Today?
In a recent posting at the E-Health Insider web-site it is reported that the Royal College of Physicians is urging a “universal and rapid SNOMED deployment” to be undertaken by the UK Connecting for Health IT Program.
The article can be found here:
http://www.ehiprimarycare.com/news/item.cfm?ID=2338
More interesting than the article is an anonymous response to the suggestion found at the bottom of the article. This is worth quoting in full as it goes to make some points and provide some useful resources for those interested in the area of practical, clinically useful SNOMED CT implementation.
“12 Dec 06 12:29
SNOMED: caveat emptor
Readers of this article (and the RCGP) are advised to check the detail before rushing into demands for immediate SNOMED implementation.
Major suppliers, would be implementers and academics are on public record stating SNOMED has manifest and significant quality control and implementation issues.
http://hl7-watch.blogspot.com/
http://www.shopcreator.com/mall/infopageviewer.cfm/Abiescouk/SCT06download
On a purely pragmatic level, clinical code sets supporting QOF/QMAS on the DoH website (URL changes almost daily :-( ) for SNOMED have not been updated since 2005 release (unlike those for the Read Codes which are up to date). This latter alone is unlikely to encourage jobbing GPs to queue up as guinea pigs for the 'imminent' releases of SNOMED enabled systems from EMIS, In Practice and others.
It just isn't as simple as whip the system suppliers I'm afraid.”
A review of the material found on these pages certainly raises some interesting and very complex questions and I would suggest anyone with an interest in the area review these two sites and the links / downloads provided carefully.
The messages I came away from all this material with were as follows:
1. If David Markwell’s presentation from March 2006 is to be believed the work of encapsulating the complexity for SNOMED CT behind a useable clinically friendly interface has yet to be completed. Without well engineered seamless interfaces to the use of SNOMED CT adoption and use of the terminology will be very slow indeed
2. The Kaiser Permanente implementation of SNOMED CT within its EPIC software implements a narrow subset of the full contents of SNOMED to make clinical coding and billing easier.
3. Professor Alan Rector (a global terminology guru if there is one) from Manchester University has recently said in a presentation that “Unless we can formalise the mutual constraints ... HL7 v3 + SNOMED = Chaos'. 'The documentation is beyond human capacity ... to write or to understand'.”
4. Other groups appear to be really struggling to deploy usable clinician friendly systems.
5. There are some significant academic linguists and ontologists who have very significant concerns about the underlying data model on which SNOMED CT is based.
6. The emergence of supporting terminologies in areas where localisation to a specific country is needed (e.g. in the local formulary) has been slower that might have been expected.
7. There is at least some concern regarding the overall data quality of the material already contained in SNOMED CT.
8. There also seem to some harmonisation issues between HL7 V3.0, CEN/ISO Standards and OpenEHR with Archetypes which indirectly impinge to some extent of terminology use.
What does all this mean practically?
I think that it is at least possible that large scale deployment of clinician friendly SNOMED CT may be more delayed than is anticipated at present – i.e. out to beyond 2010 and there is even the possibility that it may all prove ‘too hard’ and some simpler better designed approach – based on the lessons learnt from SNOMED CT – may need to be engineered.
Whatever happens it seems clear all those interested in the area should spend some time getting familiar with the current state of play so they can formulate, for themselves, informed estimates of just when systems which fulfil the promise of SNOMED CT are likely to be available.
I for one will not be holding my breath. Just as HL7 V3.0 and openEHR have taken over a decade to be developed and are not yet quite ready for ‘prime time’ as far as I know I suspect history will repeat with SNOMED CT.
I hope I am wrong!
David.
The article can be found here:
http://www.ehiprimarycare.com/news/item.cfm?ID=2338
More interesting than the article is an anonymous response to the suggestion found at the bottom of the article. This is worth quoting in full as it goes to make some points and provide some useful resources for those interested in the area of practical, clinically useful SNOMED CT implementation.
“12 Dec 06 12:29
SNOMED: caveat emptor
Readers of this article (and the RCGP) are advised to check the detail before rushing into demands for immediate SNOMED implementation.
Major suppliers, would be implementers and academics are on public record stating SNOMED has manifest and significant quality control and implementation issues.
http://hl7-watch.blogspot.com/
http://www.shopcreator.com/mall/infopageviewer.cfm/Abiescouk/SCT06download
On a purely pragmatic level, clinical code sets supporting QOF/QMAS on the DoH website (URL changes almost daily :-( ) for SNOMED have not been updated since 2005 release (unlike those for the Read Codes which are up to date). This latter alone is unlikely to encourage jobbing GPs to queue up as guinea pigs for the 'imminent' releases of SNOMED enabled systems from EMIS, In Practice and others.
It just isn't as simple as whip the system suppliers I'm afraid.”
A review of the material found on these pages certainly raises some interesting and very complex questions and I would suggest anyone with an interest in the area review these two sites and the links / downloads provided carefully.
The messages I came away from all this material with were as follows:
1. If David Markwell’s presentation from March 2006 is to be believed the work of encapsulating the complexity for SNOMED CT behind a useable clinically friendly interface has yet to be completed. Without well engineered seamless interfaces to the use of SNOMED CT adoption and use of the terminology will be very slow indeed
2. The Kaiser Permanente implementation of SNOMED CT within its EPIC software implements a narrow subset of the full contents of SNOMED to make clinical coding and billing easier.
3. Professor Alan Rector (a global terminology guru if there is one) from Manchester University has recently said in a presentation that “Unless we can formalise the mutual constraints ... HL7 v3 + SNOMED = Chaos'. 'The documentation is beyond human capacity ... to write or to understand'.”
4. Other groups appear to be really struggling to deploy usable clinician friendly systems.
5. There are some significant academic linguists and ontologists who have very significant concerns about the underlying data model on which SNOMED CT is based.
6. The emergence of supporting terminologies in areas where localisation to a specific country is needed (e.g. in the local formulary) has been slower that might have been expected.
7. There is at least some concern regarding the overall data quality of the material already contained in SNOMED CT.
8. There also seem to some harmonisation issues between HL7 V3.0, CEN/ISO Standards and OpenEHR with Archetypes which indirectly impinge to some extent of terminology use.
What does all this mean practically?
I think that it is at least possible that large scale deployment of clinician friendly SNOMED CT may be more delayed than is anticipated at present – i.e. out to beyond 2010 and there is even the possibility that it may all prove ‘too hard’ and some simpler better designed approach – based on the lessons learnt from SNOMED CT – may need to be engineered.
Whatever happens it seems clear all those interested in the area should spend some time getting familiar with the current state of play so they can formulate, for themselves, informed estimates of just when systems which fulfil the promise of SNOMED CT are likely to be available.
I for one will not be holding my breath. Just as HL7 V3.0 and openEHR have taken over a decade to be developed and are not yet quite ready for ‘prime time’ as far as I know I suspect history will repeat with SNOMED CT.
I hope I am wrong!
David.
Monday, December 11, 2006
The Access Card Debate Begins in Earnest.
ABC Radio National today broadcast a very useful review of the proposal for an Access Smartcard which is currently under development by the Commonwealth Government with the pointman being the Minister for Human Services, Joe Hockey.
The show, Background Briefing, is summarised by the ABC as follows:
“Getting smart: the Access Card
The government is bringing in a new national card, called the Access Card. Everyone who uses Medicare, Centrelink, or any government service, will have one. And they're not just normal cards. They have mini-computers inside them that can store data about your name, address and anything else. The government says they're like mp3 players, and big business loves them, but opponents say they're a new version of the Australia Card - an ID card in disguise. And they say that privacy is in peril. Reporter: Sharona Coutts”
The fifty minutes of audio, suitable for playing on both a PC or portable .mp3 player can be found here:
http://mpegmedia.abc.net.au/rn/podcast/current/audioonly/bbg_20061210.mp3
Among the interesting points made in the show were the following:
1. Enabling legislation for the Access Card has not been passed and is due to be introduced in the first half of 2007. Mr Hockey recognises that this will be the time when the project will be under most challenge. It would be a ‘courageous decision’ to spend too much before that approval is obtained. At present the Opposition is saying they don’t have enough detail to be sure which way they will vote. It seems unlikely the Greens or Democrats will support the proposal so the numbers in the Senate are likely to be tight. In the House of Representatives it is hard to know how things will play out with some Liberals being philosophically opposed to ID cards or anything like them.
2. The Government has developed a Privacy Impact Assessment for the Access Card proposal (with the assistance of Clayton Utz, a major national law firm), but it is not being released for reasons which have to be very hard to understand.
3. The Government asked a Privacy Task Force to review the proposal and when the Task Force said the individuals signature and ID number should not be human readable (i.e. written in clear text) on the card these recommendations were rejected. The concern with this information being readable is that this will make it easy for anyone to obtain (or demand) an individual’s key number and maximise the risk of “function creep” of the card. Over time it is feared everyone from the video shop up will want to record the card number and use the signature to verify identity.
4. The Government (and Mr Hockey) are not prepared to disclose even his estimates how long and complex the access card enrolment process for each citizen. This leads to concern about just how accurate the start up costing estimates and the actual proposed start date are.
5. Mr Hockey claims the Secure Customer Registration System (SCRS) will hold less information than an individual’s driver’s license but fails to disclose the range of linkages to other huge databases (e.g. CentreLink and Medicare) that will be required for the system to work.
6. It does seem that it will be technically very difficult to have citizens use their Access Card and their PC to securely store information on their card without creating highly exploitable security weaknesses as Mr Hockey has been suggesting.
7. A system as centralised as the one proposed here, but having so many users, is inevitably going to be abused by Departmental insiders for profit, curiosity or worse. (Witness the breaches at the ATO, CentreLink and the Child Support Agency). There seems to be an emerging sense of concern in the community regarding the risks such systems pose to some vulnerable parts of the population (e.g. separated wives who are being sought by their abusive husbands etc.)
As I have pointed out before, those of us who are interested in the deployment and use of Health IT have a vested interest in this project and similar identity management efforts. If the public and political contention around the Access Card becomes significant there will be negative impacts on all efforts to improve access to, and the flow of information, in other domains – including health.
It seems unlikely, for example, that NEHTA’s plans for an Individual Health Identifier (IHI), delivered as a web service it is assumed, would not be caught up in any Access Card contention and debate. It is interesting that NEHTA plans have thus far not attracted much, if any attention from the various privacy and security lobbies.
Equally, concern may emerge regarding the efforts of the various State Health Departments to deploy State-Wide universal identifiers (I wonder how many State Health Departments would want to record the Access Card Number once it becomes available? Unless they were legislatively barred I suggest the number would be close to 100%).
It seems to me that if both the privacy and function creep issues around the proposed Access Card are not handled both more robustly and more sensitively that presently appears to be the plan E-Health may wind up a major collateral casualty of a potentially failed Access Card implementation.
I commend the show as a very good listen.
David.
The show, Background Briefing, is summarised by the ABC as follows:
“Getting smart: the Access Card
The government is bringing in a new national card, called the Access Card. Everyone who uses Medicare, Centrelink, or any government service, will have one. And they're not just normal cards. They have mini-computers inside them that can store data about your name, address and anything else. The government says they're like mp3 players, and big business loves them, but opponents say they're a new version of the Australia Card - an ID card in disguise. And they say that privacy is in peril. Reporter: Sharona Coutts”
The fifty minutes of audio, suitable for playing on both a PC or portable .mp3 player can be found here:
http://mpegmedia.abc.net.au/rn/podcast/current/audioonly/bbg_20061210.mp3
Among the interesting points made in the show were the following:
1. Enabling legislation for the Access Card has not been passed and is due to be introduced in the first half of 2007. Mr Hockey recognises that this will be the time when the project will be under most challenge. It would be a ‘courageous decision’ to spend too much before that approval is obtained. At present the Opposition is saying they don’t have enough detail to be sure which way they will vote. It seems unlikely the Greens or Democrats will support the proposal so the numbers in the Senate are likely to be tight. In the House of Representatives it is hard to know how things will play out with some Liberals being philosophically opposed to ID cards or anything like them.
2. The Government has developed a Privacy Impact Assessment for the Access Card proposal (with the assistance of Clayton Utz, a major national law firm), but it is not being released for reasons which have to be very hard to understand.
3. The Government asked a Privacy Task Force to review the proposal and when the Task Force said the individuals signature and ID number should not be human readable (i.e. written in clear text) on the card these recommendations were rejected. The concern with this information being readable is that this will make it easy for anyone to obtain (or demand) an individual’s key number and maximise the risk of “function creep” of the card. Over time it is feared everyone from the video shop up will want to record the card number and use the signature to verify identity.
4. The Government (and Mr Hockey) are not prepared to disclose even his estimates how long and complex the access card enrolment process for each citizen. This leads to concern about just how accurate the start up costing estimates and the actual proposed start date are.
5. Mr Hockey claims the Secure Customer Registration System (SCRS) will hold less information than an individual’s driver’s license but fails to disclose the range of linkages to other huge databases (e.g. CentreLink and Medicare) that will be required for the system to work.
6. It does seem that it will be technically very difficult to have citizens use their Access Card and their PC to securely store information on their card without creating highly exploitable security weaknesses as Mr Hockey has been suggesting.
7. A system as centralised as the one proposed here, but having so many users, is inevitably going to be abused by Departmental insiders for profit, curiosity or worse. (Witness the breaches at the ATO, CentreLink and the Child Support Agency). There seems to be an emerging sense of concern in the community regarding the risks such systems pose to some vulnerable parts of the population (e.g. separated wives who are being sought by their abusive husbands etc.)
As I have pointed out before, those of us who are interested in the deployment and use of Health IT have a vested interest in this project and similar identity management efforts. If the public and political contention around the Access Card becomes significant there will be negative impacts on all efforts to improve access to, and the flow of information, in other domains – including health.
It seems unlikely, for example, that NEHTA’s plans for an Individual Health Identifier (IHI), delivered as a web service it is assumed, would not be caught up in any Access Card contention and debate. It is interesting that NEHTA plans have thus far not attracted much, if any attention from the various privacy and security lobbies.
Equally, concern may emerge regarding the efforts of the various State Health Departments to deploy State-Wide universal identifiers (I wonder how many State Health Departments would want to record the Access Card Number once it becomes available? Unless they were legislatively barred I suggest the number would be close to 100%).
It seems to me that if both the privacy and function creep issues around the proposed Access Card are not handled both more robustly and more sensitively that presently appears to be the plan E-Health may wind up a major collateral casualty of a potentially failed Access Card implementation.
I commend the show as a very good listen.
David.
Availability of Electronic Decision Support Evaluation Guidelines
Some good news has just been received from Professor Enrico Coiera. I thought it was worth posting the information here.
"Subject: EDSS Evaluation Guidelines
The AHIC EDSS evaluation guidelines have been unavailable for some time, with the demise of the AHIC website.
I'm happy to announce that we are now hosting the guidelines at our site:
http://www2.chi.unsw.edu.au/edsse/wrapper.php
Please let me know if there are any difficulties in accessing the material, and any thoughts on how we keep this project alive are most welcome.
Also, please do circulate the url to your EDSS colleagues.
Prof. Enrico Coiera
Director
Centre for Health Informatics
University of New South Wales
UNSW 2052 NSW Australia
T: +61 2 9385 9026
F: +61 2 9385 9006"
Professor Coiera can be reached at the following e-mail address e.coiera (-at-) unsw.edu.au if required for comment etc.
These guidelines were developed by the UNSW Centre for Health Informatics two or three years ago having been commissioned by the now apparently defunct Australian Health Information Council. While maybe now very slightly out of date they are an invaluable resource for all interested in the field.
David.
"Subject: EDSS Evaluation Guidelines
The AHIC EDSS evaluation guidelines have been unavailable for some time, with the demise of the AHIC website.
I'm happy to announce that we are now hosting the guidelines at our site:
http://www2.chi.unsw.edu.au/edsse/wrapper.php
Please let me know if there are any difficulties in accessing the material, and any thoughts on how we keep this project alive are most welcome.
Also, please do circulate the url to your EDSS colleagues.
Prof. Enrico Coiera
Director
Centre for Health Informatics
University of New South Wales
UNSW 2052 NSW Australia
T: +61 2 9385 9026
F: +61 2 9385 9006"
Professor Coiera can be reached at the following e-mail address e.coiera (-at-) unsw.edu.au if required for comment etc.
These guidelines were developed by the UNSW Centre for Health Informatics two or three years ago having been commissioned by the now apparently defunct Australian Health Information Council. While maybe now very slightly out of date they are an invaluable resource for all interested in the field.
David.
Sunday, December 10, 2006
Sometimes It’s Vital to Just Opt-Out!
Underneath the calm exterior of the NSW HealtheLink project it appears there is a little policy anxiety and confusion.
Prior to the trial commencing a Privacy Policy was published dated March 17 2006. As regular readers will be aware the policy was based on automatic opt-in and capture of clinical information with notification to each patient that they had thirty days to ‘opt-out’ before any information held on the Healthelink database would become available to all registered healthcare providers.
Regular readers will also be aware that, although there is an audit trail to record access to records, once any provider has access to Healthelink they can search for and locate any patient for which the most basic identifying information is known (e.g surname and approximate age).
The only patient control available is essentially to opt-out of the entire system.
We now find seven months later the Privacy Policy has been updated. The new document is dated October 22, 2006.
Two things appear different.
First the residential postcodes 2170 (around Liverpool) and 2560 (around Campbelltown) have been excluded from the paediatric trial. It’s hard to know what motivated these changes – unless maybe these areas lacked co-operating GPs.
Secondly the following has been added to the Privacy Policy.
“2.3 Information specific laws and policies
All personal health information is generally considered to be sensitive personal information, dealing as it does with matters that are personal and which an individual will generally expect to be shielded from public disclosure.
Sometimes individuals will have different expectations about how some of their personal health information will be used or disclosed. These expectations can be based on their own cultural or personal background, family situation, a feeling that certain information is particularly stigmatizing. Some common examples include information collected by services providing specialist genetics services, child protection services or sexual health services. There are additional legal restrictions imposed on use or disclosure which apply to the release of a person’s HIV status, adoption and organ donation information.
Whilst the Healthelink pilot system does not have the ability to identify and restrict access to these different types of personal information, some information is able to be filtered out prior to being lodged with Healthelink. These are:
• Data received from community based sexual assault and PANOC (Physical Abuse and Neglect of Children) services. NSW has special restrictions on access to adult and child sexual assault records and PANOC records, in accordance with the Criminal Procedures Act, the Children and Young Persons (Care and Protection) Act , the NSW Interagency Guidelines on Child Protection, and other NSW Health Policy.
• All molecular genetics test results (e.g. familial cancer gene status) and all cytogenetics test results (e.g. karyotyping) received from community based genetics services in the Hunter New England Area Health Service.
• All HIV associated test results (e.g. HIV antibody, HIV conformations, HIV viral loads) received from Hunter New England Area Health Service. .
Unless the individual requests otherwise, health professionals who access the Healthelink record will be able to see all other personal health information contained in an individual’s Healthelink record. If an individual has concerns about this, they may choose which organisations can have access to their record, or the individual may elect to opt out of the system.
Alternatively, healthcare providers can contact Healthelink to request that access to individuals’ records by the individual or their associate be restricted if they consider there are risks to the individual. Further information about managing sensitive information generally is provided in a number of NSW Health policies which guide staff on the management of personal health information. These are summarised in the NSW Health Privacy Manual, Section 15.9.”
Essentially, what we have here is a confession that some very private and sensitive information can slip, unknown to the patient, onto the Healthelink data-base. Were this not the case the change shown above would not have been necessary. I can only assume it is to avoid Government liability for breach of trust and / or disclosure of a possible serious risk.
Given the inevitability of security violations – even in the best regulated environments – the inability of a patient to have sensitive data actually removed from the database – rather than simply made inaccessible - is a serious worry.
That better and more robust privacy controls were not developed before the trial commenced is also a real concern. Clinicians really need to look very hard at the contents of their clinical records before permitting automatic transfer of their patient’s record to Healthelink in my view, despite being assured they are indemnified.
Before posting there is another gem I noticed in the Privacy Policy as I was reading it through. After saying that personal private information can be disclosed for emergency, compassionate, audit legal and a range of other issues there is one last reason.
11. Use and disclosure as required by the Minister or Premier
NSW Health may use or disclose personal health information if the information is required by the Minister or Premier.
Further details: Privacy Manual, Section 11.3.14
Just exactly why the Premier or Minister would be so empowered beggars belief. No wonder there are problems with community trust in such projects when things like this are said to be acceptable. One has to be grateful the authorisation was not “the Premier or delegate” – which might ensure any public servant could disclose and use - I guess.
I note in passing some of these information categories are held on the Oacis databases in South Australia. I have yet to hear back as to how these sensitivities are handled there.
David.
Prior to the trial commencing a Privacy Policy was published dated March 17 2006. As regular readers will be aware the policy was based on automatic opt-in and capture of clinical information with notification to each patient that they had thirty days to ‘opt-out’ before any information held on the Healthelink database would become available to all registered healthcare providers.
Regular readers will also be aware that, although there is an audit trail to record access to records, once any provider has access to Healthelink they can search for and locate any patient for which the most basic identifying information is known (e.g surname and approximate age).
The only patient control available is essentially to opt-out of the entire system.
We now find seven months later the Privacy Policy has been updated. The new document is dated October 22, 2006.
Two things appear different.
First the residential postcodes 2170 (around Liverpool) and 2560 (around Campbelltown) have been excluded from the paediatric trial. It’s hard to know what motivated these changes – unless maybe these areas lacked co-operating GPs.
Secondly the following has been added to the Privacy Policy.
“2.3 Information specific laws and policies
All personal health information is generally considered to be sensitive personal information, dealing as it does with matters that are personal and which an individual will generally expect to be shielded from public disclosure.
Sometimes individuals will have different expectations about how some of their personal health information will be used or disclosed. These expectations can be based on their own cultural or personal background, family situation, a feeling that certain information is particularly stigmatizing. Some common examples include information collected by services providing specialist genetics services, child protection services or sexual health services. There are additional legal restrictions imposed on use or disclosure which apply to the release of a person’s HIV status, adoption and organ donation information.
Whilst the Healthelink pilot system does not have the ability to identify and restrict access to these different types of personal information, some information is able to be filtered out prior to being lodged with Healthelink. These are:
• Data received from community based sexual assault and PANOC (Physical Abuse and Neglect of Children) services. NSW has special restrictions on access to adult and child sexual assault records and PANOC records, in accordance with the Criminal Procedures Act, the Children and Young Persons (Care and Protection) Act , the NSW Interagency Guidelines on Child Protection, and other NSW Health Policy.
• All molecular genetics test results (e.g. familial cancer gene status) and all cytogenetics test results (e.g. karyotyping) received from community based genetics services in the Hunter New England Area Health Service.
• All HIV associated test results (e.g. HIV antibody, HIV conformations, HIV viral loads) received from Hunter New England Area Health Service. .
Unless the individual requests otherwise, health professionals who access the Healthelink record will be able to see all other personal health information contained in an individual’s Healthelink record. If an individual has concerns about this, they may choose which organisations can have access to their record, or the individual may elect to opt out of the system.
Alternatively, healthcare providers can contact Healthelink to request that access to individuals’ records by the individual or their associate be restricted if they consider there are risks to the individual. Further information about managing sensitive information generally is provided in a number of NSW Health policies which guide staff on the management of personal health information. These are summarised in the NSW Health Privacy Manual, Section 15.9.”
Essentially, what we have here is a confession that some very private and sensitive information can slip, unknown to the patient, onto the Healthelink data-base. Were this not the case the change shown above would not have been necessary. I can only assume it is to avoid Government liability for breach of trust and / or disclosure of a possible serious risk.
Given the inevitability of security violations – even in the best regulated environments – the inability of a patient to have sensitive data actually removed from the database – rather than simply made inaccessible - is a serious worry.
That better and more robust privacy controls were not developed before the trial commenced is also a real concern. Clinicians really need to look very hard at the contents of their clinical records before permitting automatic transfer of their patient’s record to Healthelink in my view, despite being assured they are indemnified.
Before posting there is another gem I noticed in the Privacy Policy as I was reading it through. After saying that personal private information can be disclosed for emergency, compassionate, audit legal and a range of other issues there is one last reason.
11. Use and disclosure as required by the Minister or Premier
NSW Health may use or disclose personal health information if the information is required by the Minister or Premier.
Further details: Privacy Manual, Section 11.3.14
Just exactly why the Premier or Minister would be so empowered beggars belief. No wonder there are problems with community trust in such projects when things like this are said to be acceptable. One has to be grateful the authorisation was not “the Premier or delegate” – which might ensure any public servant could disclose and use - I guess.
I note in passing some of these information categories are held on the Oacis databases in South Australia. I have yet to hear back as to how these sensitivities are handled there.
David.
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