Data Standards and Terminologies: Who Cares?

March 25

A Briefing Paper for the UK Faculty of Health Informatics

In this briefing paper we discuss the implications for developing education and training aids to ensure that current and future professionals within the NHS, industry and higher education are sufficiently informed and educated in clinical terminologies and codes. We highlight the cases of PRIMIS+ and the Yorkshire Centre for Health Informatics as educators in the field and how their experiences can be built upon through enhanced support, collaboration and cohesion. Results were informed by a one-day “masterclass” event which was attended by 40 stakeholders from academe, the NHS and industry.

The Yorkshire Centre for Health Informatics (YCHI) was awarded a grant from the UK Faculty of Health Informatics to report to look at how to ensure that current and future professionals within the NHS (and other sectors and professions) are sufficiently informed and educated in the terminologies and products of the Department of Health Informatics Directorate’s Data Standards and Products (DS&P1) team. This included being tasked to look at how much of this vocabulary, terms and concepts do the various professions (both clinical and health informatics) need to be aware of and how to influence and introduce this into educational curriculum. The need for data standards and terminologies is re-enforced by Recommendation 115 of The Kennedy Report which came out of The Bristol Royal Infirmary Inquiry2 which suggests: “Systems for clinical audit and for monitoring performance rely on accurate and complete data. Competent staff, trained in clinical coding, and supported in their work are required: the status, training and professional qualifications of clinical coding staff should be improved.” In the global health space there are numerous standards for data capture, audit and reporting such as SNOMED-CT and ICD-10 and for data transfer such as HL7. Although these attempt to be shared standards across national boundaries there are also a number of standards specific to each country. In the NHS the DS&P team are responsible for the introduction, development and delivery of coding system products used in the patient records of the NHS Care Records Service, and for the phasing out of dated systems. The vast majority of codes produced by NHS DS&P are unique and almost all of our coding systems are interrelated. A major challenge faced in ensuring that data standards and terminologies are adhered to is that in some instances there are no codes used at all which is supported by masses of free text in information systems. Reliance on codes and computation using codes is a profound change in the nature, context and use of clinical communications. In the absence of coding practice that is clearly capable of being at least as expressive and effective in communicating to clinical peers, doctors


Data Services – The Bristol Royal Infirmary Inquiry –


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prefer to use the expertise they have developed in communicating using clinical notes, a practice that at its best is a subtle and nuanced use of English that is able to communicate very complex ideas in a compact and effective way3. In other cases, local codes are used which are not linked to national or international data standards such as Read or SNOMED-CT. As highlighted by Richesson and Krischer (2007) the challenge is that there is a lack of definition of the purpose of standards which at a low-level has implications for the information model selection and design.

The challenge is how to communicate these standards to the various professions and how they can be included in education and training. The NHS Data Standards and Products are split into five services each maintaining a number of data terminology products: 1. The NHS Terminology Service manages the International Health Terminology Standards Development Organisation (IHTSDO4) which “acquires, owns and administers the rights to SNOMED CT and other health terminologies”. The Terminology Service itself supports and maintains the following Data Products: o The Systematised Nomenclature of Medicine Clinical Terms (SNOMED CT) is a common computerised language used to facilitate communications between healthcare professionals in clear and unambiguous terms. It has greater depth and coverage of healthcare requirements than the legacy versions of Clinical Terms (Read Codes) that it replaces. o Read Codes are a hierarchically-arranged controlled clinical vocabulary introduced in the early 1980s. The code sets are dynamic, and are updated quarterly in response to requests from users including clinicians in both primary and secondary care, software suppliers, and advice from a network of specialist healthcare professionals (Robinson et al., 1997). They are mainly used in primary care but are slowly being phased out and superseded by SNOMED CT.


Personal communication between Ann Wrightson (Informing Healthcare) and Dr. David Ford (Swansea University) in the context of clinical documentation.

International Health Terminology Standards Development Organisation –

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The Dictionary of Medicine and Devices (dm+d) is a dictionary containing unique identifiers and associated textual descriptions for medicines and medical devices. It has been developed for use throughout the NHS (in both primary and secondary care) as a means of uniquely identifying the specific medicines or devices used in the diagnosis or treatment of patients.

2. The NHS Classifications Service delivers national clinical classifications standards and guidance for the clinical coding profession. This includes delivering the National Clinical Classifications Helpdesk and providing an extensive Training and Accreditation scheme 5 which awards the National Clinical Coding Qualification (UK). o ICD-10 is an abbreviation for the International Statistical Classification of Disease and Related Health Problems and is used in the NHS acute sector to record diseases and health-related problems (the diagnosis or reason for a patient episode of healthcare). o OPCS-4 is an abbreviation for the Office of Population, Censuses and Surveys Classification of Surgical Operations and Procedures and is a statistical classification which translates operations and surgical procedures into codes. 3. The NHS Data Model and Dictionary Service provide the development, maintenance and support of NHS data standards including the NHS Data Model and Dictionary6 which provides a reference point for assured information standards. 4. The Spine Directory Service (SDS) supersedes the National Administrative Code Service (NACS) in providing real-time publication of information about NHS entities such as organisations, staff and services. The Information Quality Assurance Programme (IQAP) was established to ensure that guidance documents are issued to advise the NHS and Local Service Providers of the data quality related standards necessary for the NHS Care Records Service (NHS CRS).


NHS Classifications Service Training and Education Scheme – html

NHS Data Model and Dictionary –

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This research aims to examine the extent to which a single educational curriculum (or number of curricula) is required across various levels and health care professions which are defined during our stakeholder identification exercise in the Results section. To examine this question, YCHI conducted an internal literature review and hosted a one-day masterclass. The working title for the masterclass was “Data Standards and Terminologies: Who Cares?” as we wished to dispel the myth that the only stakeholders interested in data standards were the producers of those standards. The purpose of the day was to share experiences of data standards and terminologies and to discuss and inform a strategy for educational materials within the NHS. There were forty delegates in attendance (plus ten additional attendees registered for the afternoon’s online conference call) bringing together stakeholders from academe, industry, the NHS and other organisations including the Professional Association of Clinical Coders (PACC-UK), the International Medical Informatics Association (IMIA) and the National Institute of Health Research (NIHR). We were also joined by PRIMIS+7 who presented their experiences in primary care and coding and also the Microsoft Common User Interface (CUI) team discussing their design process and collaborations with the NHS. The broad range of stakeholders was recruited through numerous mailing lists such as JISCmail and the NHS-Higher Education Forum, and other professional bodies such as the Association for Informatics Professionals in Health and Social Care (ASSIST). The agenda for the day was:  A keynote presentation from Dr. Ed Cheetham, Principal Terminology Specialist, from the NHS Connecting for Health Data Standards and Products team who discussed the standards described in the Background section and the wider standards environment. This included who they work with and also what constitutes a standard using SNOMED-CT as an example.   Six open floor “experiences” of data standards in practice which are described in Section 2 of the Results. Two group exercises for identifying stakeholders and then discussing how educational material could be targeted at that particular group which are described in Sections 3 and 4 of the Results.


Primary Care Information Services (PRIMIS+) –

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An Online WebEx plenary discussion with invited delegates from across the world where the results of the group exercises were then amalgamated and shared which is described in Section 5 of the Results.

This “participatory design” approach (Schuler and Namioka, 1993) of the design of the masterclass which is used primarily in product design and software engineering gave the advantage of being representative of a broad spectrum of stakeholders and helped generate knowledge in short cycles. A survey of the same group of people would not have had the same effect and could have favoured the pre-existing notions of the researchers.

Results were collected using several techniques which allowed for data to be synthesised and displayed graphically using word clouds and mind maps and textually using descriptions and key themes. The results are presented in sections which are informed by discussions, group exercises and plenary sessions throughout the day.

1. Wordle
An initial high-level perception of experiences was elicited where masterclass delegates were asked to provide three words describing their practical experiences of data standards and terminologies. The question that they were answering stated: “What are three words you would use to describe the current level of understanding and use of standards in the NHS?” The words were noted on paper sheets and then typed and input into an online word cloud generator, Wordle

( which calculates word frequencies and displays results graphically. The results are shown below:

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As can be seen from the word cloud, despite the coverage of the policy-level agenda there are still people whose current level of understanding and use of standards in the NHS is inconsistent, variable, confused and fragmented. Whilst data standards in themselves are fixed there is no “standard for standards” and often terms mean different things to different stakeholders. This highlights a failure to recognise that health informatics is a multidisciplinary area and that customary professional vocabulary in different disciplines can easily clash. This is a serious communication problem that needs recognising. As one of the delegates suggests “... most of those attending are already committed to the standardisation agenda” and so we must all work together to improve the communications of these issues with standards.

2. Open Floor Experiences
An “open floor” experiences session gave invited guest speakers the chance to give short presentations of fifteen minutes (with discussion time) on their involvement in data standards and terminologies. These included experiences from: a) Jacky Skeel and Helen Atkinson from PRIMIS+ b) Sue Eve-Jones from the Professional Association of Clinical Coders (PACC-UK) c) Owen Johnson from YCHI and their use of SystmOne in undergraduate primary care teaching d) The Microsoft CUI team e) Ann Wrightson from Informing Healthcare f) Rick Jones on the National Laboratory Medicine Catalogue (NLMC).

Having numerous stakeholders was beneficial in that it gave delegates a much broader view of data standards than many of them had seen before. Each experience is described in this section and the two most relevant to education and training were by PRIMIS+ (University of Nottingham) and the Yorkshire Centre for Health Informatics are also included in the Case Studies section to give examples of how their work is being delivered in their local areas. a) PRIMIS+ (University of Nottingham) PRIMIS+ is a free service to primary care organisations to help them improve patient care through the effective use of their clinical computer systems. It has been part of The NHS Information Centre for Health and Social Care services since the beginning of January, 2009, and has been training, supporting and analysing service for primary care since 1997. b) Professional Association of Clinical Coders UK (PACC-UK) Prepared by the Yorkshire Centre for Health Informatics Page 6

PACC-UK is an organisation solely dedicated to supporting clinical coders in the UK. The Association was formed to improve the profile and status of clinical coders and other professionals working within the UK clinical classifications arena. The Association’s primary objective is to help raise the profile of Clinical Coders and to promote the understanding of the value of clinically coded data. Issues that were raised included the lack of good standards and their accessibility in practice and the methods of current standards of clinical coding education were critiqued. An important distinction was drawn between the role of coders in the classification diseases and the applications of codes to records, a terminology function. Three quotes formed the basis of discussion, one suggesting that “Data can only be used for the purpose for which it is collected” which requires an understanding of context and purpose of coded data, and how it has been collected. The second that “errors using inadequate data are much less than those using no data at all” which was argued to be extremely dangerous in a clinical setting, and the third was “Experts often possess more data than judgement” suggesting that just because data may be available to health professionals they should not assume that it is entirely correct. c) Undergraduate use of TPP SystmOne (Yorkshire Centre for Health Informatics) NHS Connecting for Health supports the NHS to deliver better, safer care to patients, via The National Programme for IT. Students starting medical school degrees can now expect to be working in a networked information environment radically different from that which current healthcare providers, their tutors and the public have been used to. Their ability to work with the information that technology provides will be critical to patient safety while their potential to take a leading role working with new technology may be a critical factor in encouraging and supporting others to adapt to new systems. YCHI have an established working group entitled Clinical Information Systems in Primary Care (CISPC) which is dedicated to the development of relevant and up-to-date clinical education for all primary health care practitioners including doctors and nurses. The group is working with Leeds Medical School to develop an informatics vertical theme through all five years of the undergraduate medical curriculum at Leeds and a key element of this has been the use of real clinical information systems in hands-on sessions which have been found to be extremely successful and engaging for their students. d) Microsoft Common User Interface (MS CUI)

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The Microsoft Common User Interface (MS CUI8) programme works in collaboration with the NHS to provide User Interface Design Guidance and Toolkit controls that address a wide range of patient safety concerns for healthcare organizations worldwide, enabling a new generation of safer and more usable health applications to be quickly and easily created. The CUI team shared their experiences of working with the NHS, challenges that they face as designers and how their process is based in constant consultation with the NHS and other stakeholders. They demonstrated a test product called the Clinical Documentation Solution Accelerator (CDSA) which gives health professionals the controls to clinically-encode standard Microsoft Word documents such as discharge letters with elements such as SNOMED-CT codes and other information such as medicines and treatments. They stressed the importance of how front-end design can affect decisions as well as the implications for “back-end” data modellers and designers. e) Informing Healthcare (NHS Wales) NHS Wales is working incrementally towards a “Single Record” – not a central database, but a combination of pragmatic ways of connecting healthcare IT systems so that information for patient safety and to support care is available where and when it is needed. Two systems are particularly relevant from the point of view of clinical coding. The first is the Individual Health Record (IHR), a service that makes a selective extract from GP practice data available in unscheduled care settings. In the IHR service, a content model is being used that accommodates coding as currently used in GP practice systems, and for example uses rules agreed with GP system suppliers, based on codes, to exclude sensitive information such as sexual health from the service. The second system is the Welsh Clinical Portal (WCP), an in-house development supporting pathology & radiology requesting and reporting in secondary care. In the WCP, coding of the requests is represented in the interface in a way that emphasizes usability in the clinical context, with rigorous coding (SNOMED CT) applied internally. In both these programmes of work, it is our experience that clinical and IT staff who are involved in design and development need to have an appropriate kind and level of knowledge about coding. Their knowledge needs are different, and also overlap, so that a multidisciplinary team can work together to deliver a safe and effective information system to support care. f) The National Laboratory Medicine Catalogue (NLMC)


Microsoft CUI –

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The NLMC is a British National Formulary for laboratory investigations. It is a system-independent dataset, nationally-defined and managed, that contains the nationally-validated core attributes that are common to any valid Pathology request. For example test request name and associated valid specimen types would both be attributes within the NLMC. Once the NLMC becomes widely embedded within pathology order communications solutions it will mean that pathology tests that have been validated for use in the NHS and can be requested by a care provider will always be presented to them in an identical way regardless of the requesting location or pathology service being used. Discussion A number of key points were generated through the presentations and discussions:  The need for standards is well understood by insiders and is less well understood by practitioners. In some instances codes are being used to drive finance which distorts information value where the context of collection and use is crucial to data interpretation.  There is a wide variety of high quality material available already but finding the most appropriate platform to share materials has been a challenge. There are examples of where training and education has shown coding volume and quality improving.  The lack of a capable development and deployment workforce can be as big an inhibitor as knowledge of standards which leads to a danger of “watering down” training which undermines quality.  Multidisciplinary approaches are key as well as the need for common user interface design. System agnostic design guidance is needed to support a healthy healthcare information technology supplier base.  Controlled collaborative tooling is needed to support the process – not a free for all but must allow easy access for contributors. The experiences of this range of stakeholders were then collated into a group exercise outlining the stakeholders groups and how much they should care or know about health data standards.

3. Stakeholder Identification
The diverse range of stakeholders could be allocated to a group of primary users – those who are required to use codes as part of routine patient care such as clinicians, nurses and allied healthcare professionals – secondary users who use codes for audit or other managerial purposes or research,

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technology users who are designing and building clinical systems or the standards themselves, national organisations and professional bodies, and trainers and educators. A draft mind map of stakeholders is shown below:

It was proposed that each stakeholder needs to care about data standards but the extent of which data standards was debated. For example, clinicians were believed to need to know about clinical standards such as SNOMED-CT and about user interfaces but not about HL7 interoperability or Internet protocols. They should also look to invest time in learning about reporting tools and security standards. Suppliers of healthcare IT systems needed to know (and care) the most in supporting such a wide range of stakeholders. Through each of the table’s discussions it was evident and agreed that simply “teaching standards” is inappropriate.

4. Stakeholder Course Design
Groups of delegates were randomly-allocated a stakeholder from the Stakeholder Identification session to discuss their own views on delivering a one-day course to that particular group of stakeholders. This included ideas for content to address their particular needs but also the critical success factors of such a course. These are summarised in the table below:

Themes and Issues

Critical Success Factors

Content Depth (Generic vs. Specific) Specialisms Content Overlap

Relevance to Stakeholder Groups (Income, Quality, Legal, Input to Research Projects) Penetration

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Source for Case Studies (Good and Bad) Context and Message (Morgues, Prisons, Court Rooms) Continuous Touch Points (Stage of Career)

“Top of the Shop” Support Finance Embedded Standards Before and After Comparison

Repetitive Training Models

Results were then presented back to the group and were discussed. The key questions surrounding the approaches needed to satisfy these goals is whether current resources are adequate or whether there is a need for new ones to be developed. There are already a number of suppliers of training and education in the NHS and higher education institutions so there is a tension between whether we should be supporting existing suppliers, introducing a more competitive market or facilitating further collaboration between organisations in both the public and private sector. As an example, both PRIMIS+ and YCHI are in relatively unique positions in a turbulent landscape but what may be lacking is adequate dissemination of their results and experiences. Would sharing these case studies help? And, how do we share results and experiences from those who are doing with those that need to be doing? Other resources such as the National Clinical Coding Qualification (UK)9 and the associated training10 which are tailored specifically for clinical coders need to be highlighted, shared and personalised to other health care professions and be built into higher education teaching and training rather than existing in isolation. The options that we believe would satisfy this resource need are highlighting the importance of higher education Masters courses and CIS training in the medical undergraduate curriculum. For existing professionals there is a need for them to continually refresh their knowledge through “train the trainer” models of information cascading as demonstrated by the PRIMIS+ model and also within the Clinical Coding Trainer Toolbox11 and the Approved Clinical Coding Trainer status. For software


National Clinical Coding Qualification (UK) –

Delivering Key Skills for Clinical Coders – html

Clinical Coding Trainer Toolbox – html

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suppliers, who are incredibly important in building and maintaining legacy and new health care systems, there should be incentives for them to adopt standards but also increased awareness campaigns of existing products and tools. For example, the Microsoft CUI designs guidance and Data Model and Dictionary. Results also highlighted the need for multiple methods of dissemination of training and education products for different stakeholders. For example, medical students were felt to need shorter, more interactive exercises which would increase in complexity during their period of study. It was also suggested that these exercises were linked to research projects and would continue as continuing professional development throughout their career. For senior managers it was important to highlight the financial and legal implications for not coding although it was recognised that this would need to be in short timeframes. It was felt that unless the ‘Top of the Shop’ understood the critical need for the adoption of standards then enabling culture change further down the organisation is hard. Hence a key target audience would be Chief Executives and members of Trust Boards.

5. Online WebEx Session
The recommendations were then discussed via a plenary session which was opened up to external delegates through an online WebEx panel which was “attended” by AGFA Healthcare and a representative from NHS National Services Scotland. The discussions were centred on a common set of questions which were made available to participants prior to the session:          Where we are now? Who should take this forward? Who should pay? How is there a return on effort? What is the role of national leaders? What is the role of local professionals? What should the Universities be doing more of? What about commercial trainers? What about the ICT suppliers?

The group reflected on where we are now and then who should take this agenda forward. There is no central buy-in yet much of the work is voluntary and many research units would like to collaborate but effort has not been centralised or brokered. This generates questions around who should pay for such cohesion but also what would adequate return on effort look like. What is Prepared by the Yorkshire Centre for Health Informatics Page 12

required is an agreement of the basics and what standards exist and their scope and availability. For example, researchers may wish to know about how to build databases that conform to national standards and how to access local expertise.

Case Studies
Two case studies were chosen as they best represented how educational institutions are tackling the issues surrounding training needs of health professionals. PRIMIS+ on the needs of primary care organisations and YCHI the use of a clinical information system in undergraduate teaching.

PRIMIS+ (University of Nottingham)
PRIMIS+ is a free service to primary care organisations to help them improve patient care through the effective use of their clinical computer systems. They work via information facilitators funded by local Primary Care Trusts (PCTs) to provide GPs with:      Training in information management skills and recording for data quality Analysis of data quality, plus a comparative analysis service focused on key clinical topics Feedback and interpretation of the results of data quality and comparative analyses Support in developing action plans to improve data quality Support in achieving accredited standards for good quality data.

PRIMIS+ provides training and assistance to information/data quality facilitators employed by PCTs or local Health Informatics Services (HIS). These facilitators then “cascade” their knowledge and skills to GPs and practice staff in their local health communities which is analogous to the “training the trainer” models of education. These are also facilitated by “learning networks” where peers share best practice and connect with others with similar interests. The benefits of these networks include learning from successes and failures, assisting in planning and making changes and valuing existing skills and expertise. There are currently five learning networks discussing a range of topics from data quality in prisons to query running and writing. PRIMIS+ provide several “units” of training in their curriculum which include the “Language of Health”, “Analysing and Interpreting General Practice Clinical Data” and “Data Extraction in Clinical Practice”. These units are made up of a blend of face-to-face workshop sessions and online learning

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to make a more flexible learning experience. Since its launch, more than 100 facilitators and Primary Care Trust (PCT) staff have enrolled on the PRIMIS+ Learning Centre and 40 learners have already completed an online learning element. On the PRIMIS+ web site they also share a number of case studies 12 which includes “Data Quality and Coding”. Two examples are:  CHART is a software tool developed by two GPs which queries and extracts data from a practice’s clinical system including set libraries for Local Delivery Plans (LDPs) and the Quality and Outcomes Framework (QOF). At Bury Primary Care Trust (PCT) they use CHART to look at the QOF for audits but also LDP smoking and obesity returns and to help with learning disability registers. The Trust also use CHART to cross-check other data sources such as disease registers to ensure the correctness of the reported numbers. For national data collections such as flu vaccine uptake, CHART creates a summary which can be uploaded electronically to the Health Protection Agency and also allows practices to share all the graphs and data with their entire primary care team. As a tool, CHART is giving health care providers more control over their data but is also helping to educate them of the importance of standards and coding.  At South Gloucestershire PCT they have been working with 31 practices to ensure members of staff know which codes to input, and eradicate the use of free text or local codes. Reports by their Information Management and Technology Directed Enhanced Service (IM&T DES) flagged up errors in data from incorrect coding, with inappropriate gender codes and the use of local or practice codes highlighted as the most common problems. Regular practice visits were scheduled to run audits and discuss the importance of correct data and talks were given at user group meetings, data quality newsletters were sent to practices and additional training was suggested where it was needed. It is evident from the number of case studies and training events that PRIMIS+ are doing extensive work in this area which needs to be supported and promoted.


PRIMIS+ Case Studies –

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Undergraduate use of TPP SystmOne (Yorkshire Centre for Health Informatics)
YCHI works in partnership with a national clinical information systems supplier (TPP) to create a complete virtual primary care practice with over 300 virtual patients in as close a simulation to real life clinical settings as possible. A teaching laboratory with 45 PCs is configured to run real informatics systems with “hands-on” sessions involving each student taking responsibility for maintaining an individual patient’s electronic record based on carefully-designed scenarios delivered as worksheets and videos of patient consultations. A key feature of the learning experience is students recognising the professional, clinical and practical implications of relying on each other’s accurate and effective information systems use. Students quickly appreciate the need to develop and encourage good practice and are enthused to exploit the clinical benefits of informatics solutions. This approach is motivated by a belief that work place learning must reflect the real working environment in order to ensure clinicians are fit for purpose. To date 390 students have taken this introductory teaching session and completed their six week placement in primary care. The majority of students were clearly IT literate and competent with the basic technology though some needed detailed help. Most coped well with first exposure to a complex and rich clinical system though some initially found the session overwhelming and needed help entering clinical data. From our initial observation we felt that many students do not have an appreciation of the overall process of care despite the ubiquitous use of care pathways in the NHS planning, and have yet to develop an abstract model of the structure of distributed electronic as opposed to linear paper records. Without this it is difficult to place the use of the CIS in context and we are iteratively amending our introductory material to take this into account. We were encouraged by the degree to which the session stimulated spontaneous discussion about the differences between coded data, that is auditable, and the rich, non-coded narrative data which conveyed a fuller, more holistic clinical picture. Students rapidly developed insight into the strengths and weaknesses of current methods of information capture within the consultation such as the Read code browser. The most competent students quickly found how to navigate the system and many were able to appreciate the sophisticated design features of the human-computer interface. Formal feedback for all of the sessions confirmed these observations with students finding the sessions informative and stimulating. In the first year of the teaching (2008/09) 252 students attended the teaching sessions and completed the course evaluation. 75% felt more prepared for their clinical placement and 89% felt it was relevant and useful to their current learning and 90% felt it relevant to their future working (Lea Prepared by the Yorkshire Centre for Health Informatics Page 15

et al., 2009). Tutors who delivered the sessions found the system easy to incorporate into the classes and facilitated the practical demonstration of tools such as the semi-automated Read coding and BMI calculation. Feedback from GPs involved in the teaching programme confirmed the value of helping the students understand system capabilities before exposure to the clinical problems and the potential influences of the system on the consultation and the doctor patient partnership.

Conclusion and Recommendations
The research confirms that standards are viewed as a key element if progress is to be made in the provision of digital systems in health. The work reveals some large gaps in understanding of the complexity of the issues, particularly as regards a divide between technical and managerial leaders. The scale of the educational problem is large and multi-faceted and it is unlikely that any single measure will meet the needs of the NHS to adopt standards more rigorously as its information systems developments move forward. It is likely that a joint bottom up and top down approach will be needed to achieve further progress. The aim of the top down approach should be to ensure that senior NHS business managers understand the imperative for standards to underpin efficient and effective clinical care. This also includes the need to be sufficiently aware of the technicalities as to be able to have confidence in the recommendations of their Informatics staff when selecting systems and approaches to system deployments. At a middle-management level there is a need to ensure that long-term gains are not sacrificed for short-term pragmatic wins. This will require a collective approach to systems integration with judicial choice of routes to conformance as demonstrated by the Welsh approach. Included in this layer are the systems suppliers where gaps in knowledge are evident. Some incentive-building and policing of the systems being provided in the market place will be necessary supported, one hopes, by the better informed choices of better-educated NHS managers. The scale of educational need on the ground is also large. This probably relates more to questions of data quality than standards per se as many of the coding and classification standards should probably not be exposed to end-users. The development of usable, intelligent common user interfaces will be critical to this part of the endeavour and exposing users to better-designed systems which allow them to concentrate of clinical tasks must be a major goal rather than them acquiring detailed knowledge of terminologies and code schemes.

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How this is delivered is a matter for conjecture but is likely to involve partnerships between the NHS, higher education institutions (HEI) and the training sector, with each group contributing to its own niche. One common theme was the way in which standards collections are hidden from view or held in obscure collections. Increasing their visibility and ensuring easy access for supplier and developers may be a key step.

This paper was written by Mark Hawker, Owen Johnson, Dr Rick Jones and Dr Susan Clamp. We are grateful to the many respondents for their contributions. The Yorkshire Centre for Health Informatics is a leading international centre for health informatics expertise, collaboration and research. Our mission is to improve heath care practice through high quality research and evidence based education and training. The centre brings together partners from the University, NHS and Industry to help meet the challenges in handling health information. Our objectives are to develop knowledge through multidisciplinary research; develop ‘best practice’ and quality assurance within health informatics processes; disseminate ‘best practice’ through education and training; facilitate knowledge transfer by bridging the gap between health informatics researchers, healthcare providers and health IT industries.

Lea, A., Nicholls, G., Pearson, D., Clamp, S., Johnson, O. and Jones, R. (2009) Learning about and using electronic medical records (EMR) in undergraduate education – the Leeds experience. Proceedings of the Association for Medical Education in Europe. Spain: Malaga. Richesson, R. L. and Krischer, J. (2007) Data standards in clinical research: Gaps, overlaps, challenges and future directions. Journal of the Medical Informatics Association; 14(6): pp. 687-96. Robinson, D., Schulz, E., Brown, P. and Price, C. (1997) Updating the Read Codes: User-interactive maintenance of a dynamic clinical vocabulary. The Journal of the American Medical Informatics Association; 4(6): pp. 465-72. Schuler, D. and Namioka, A. (1993) Participatory Design: Principles and Practices. L. Erlbaum Associates Inc: NJ, USA.

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