STEP and SGML/XML: what it means, how it works		Table of contents		Indexes		Reuse and Reality: A Journey from Ideal Concept to Real World Implementation

Blood Sweat and Tears (Five years of practical experience applying XML/SGML to clinical information)

Tony Sharer

Operations Director

Graphnet Newport Pagnell
Bucks United Kingdom MK16 8HE
Phone: +44 1908 484048
Fax: +44 1908 484123
Email: tonys@graphnet.co.uk Web: www.graphnet.co.uk

Biographical notice:

For the past five years Graphnet has been pioneering the use of XML/SGML to improve the utility of clinical information by making it available in a patient centred, clinician friendly way. This work has culminated in a full working patient record system at the Robert Jones and Agnes Hunt Orthopaedic Hospital Trust Oswestry United Kingdom.

ABSTRACT:

EBM

EHR

EPR, Electronic Patient Record

Health

Medical

NHS

This document has been prepared in response to a request from Joachim Dudeck (Universitaet Giessen) to comment on the practical experiences and lessons learnt during the development of a working XML/SGML based EPR (Electronic Patient Record) .

"Blood Sweat and Tears"

Graphnet is in its fifth year of development of XML/SGML based ( EPR ).

Blood

Initially the response from IT professionals, Medical Informatics Experts and NHS Management towards using SGML for medical records was hostile and sceptical.

Entrenched attitudes, self-interest and lack of vision were significant obstacles. We were frequently told that this approach wouldn't work and that more conventional computer technologies were the way forward. Some believed that data base technology would be the answer. Others that scanning paper records and providing online access to the images would be the panacea. Whilst we could see that these technologies would provide part of the solution we couldn't envisage how they were "the answer."

In 1995 we commenced our work, firstly determining if SGML was an appropriate technology to be used for developing an EPR . Sean Brennan Bill Dodd and Peter Drury from the NHS Executive had sufficient vision and foresight to fund an appraisal into the use of SGML in healthcare initially within the Robert Jones and Agnes Hunt Orthopaedic and District NHS Hospital Trust in Oswestry.

This work has involved and evolved into studies into what clinicians need and expect from EPR , clinical working practices, the documents and the opinions of 300 healthcare professionals from several Trusts, who use patient records in the course of their professional duties. There were also consultations with the Royal Colleges. The result is a working XML/SGML based EPR in the Robert Jones and Agnes Hunt Orthopaedic and District Hospital Oswestry UK, which has the largest number of XML/SGML health records in the World.

This response, to Joachim Dudeck's request for our observations about building a workable XML/SGML EPR system architecture is based on our practical experience of how to develop data structures and architectures that provide clinicians with patient centred information that can be used to improve patient care.

We do not believe that there is a single answer to how to produce an EPR . Attempting to promote XML as "the answer" is as wrong headed as saying that using database technology is the only solution.

Sweat

Workable solutions need to take into account existing systems and infrastructures. Most Acute Trusts, in the UK, still do not see investment into clinical based IT as a high priority. Pentium PC's in many Trusts are still a rarity. At the Robert Jones and Agnes Hunt Orthopaedic Trust, the IM&T Department funds the replacement of ten PCs per year. Working with elderly technology creates many headaches but it is part of the working reality.

Internal IT skills and expertise are often in short supply. At the Robert Jones and Agnes Hunt Orthopaedic Trust, staffing levels of the IM&T department are severely depleted. In 1995 the IM&T department comprised of six people. Now, in 1999 there are currently two people performing the same function.

Based on our experiences and investigations the majority of Acute Healthcare Institutions have a number of diverse computer systems (Systems for controlling Patient Administration, producing laboratory, x-ray information, clinic notes, discharge summaries and reports etc.) Most Trusts use these systems to output paper documents to make up a physical patient health record.

It is unlikely that healthcare organisations will discard their existing systems and implement new high cost integrated replacements. What is needed is a way of making improved use of existing systems and data.

EPR s of the new millennium are likely to use Internet/Intranet type approaches that use a mix of best of breed specialist systems to produce relatively low cost, scalable, solutions to the problem of providing clinical information in a form acceptable to and usable by healthcare professionals.

The problem of what to do about the free text element of a health record is a question that has not, until now, been adequately addressed.

Approximately 70% of a health record comprises of free narrative text; making this free text element capable of machine processing is key to gaining value from this information in terms of research and clinical governance.

There is also a need for a framework that enables the information from these disparate systems to be presented in a clinician friendly way. Valid XML/SGML on its own is not the total answer but it is an important component in making an EPR a practical reality; providing both the means of analysing free narrative text and the framework/mechanism for delivering the information in a patient centred clinician friendly way.

Tears

Implementing computer systems in a clinical environment is a fraught business.

Partisan attitudes about ownership of information, interdisciplinary rivalry and an inherent conservatism are significant hurdles. In our experience data structures need to be defined by working practices. Re-engineering working practices whilst encouraging the use of computer systems produces complications, leads to misunderstandings about expectations and causes failed implementation.

Clinical document structure must be followed initially and only changed once existing practice has moved to structured markup. Complex data designs result in data overload, systems that are over complex and failure in practice (Experience the USA and Japan).

The use of document markup is ideal for clinical governance, research and audit but using markup for delivering information to patient and specific devices must be by local initiative backed by clinical management and Information Management and Technology protocols.

Technology should be used to aid the clinician with respect to safe and efficient practice and not de-skill the clinician.

Conclusion

Information and specialist knowledge are the stock in trade of clinicians. The provision of healthcare in Europe is in the hands of highly educated clinicians that have been subjected to an expensive, lengthy, rigorous and demanding training regimes. The biggest challenge facing those of us promoting EPR is in convincing healthcare professionals that clinical information, in an electronic format, is as indispensable as a stethoscope or a scalpel.

EPR is a clinical tool that helps healthcare professionals use their skill experience and knowledge to improve and enhance patient care. Providing systems that threaten the status and professional standing of clinicians by notionally "de-skilling" their role will create hostility and opposition to the use of these new clinical tools.


STEP and SGML/XML: what it means, how it works		Table of contents		Indexes		Reuse and Reality: A Journey from Ideal Concept to Real World Implementation