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Co-ordination between clinical coding systems and pragmatic clinical terminologies based on a core open system: the role of ISO/TC215/WG3 and CEN/TC2511/WG2 standardisation?

The article addresses the need to co-ordinate efforts to develop clinical coding systems and pragmatic clinical terminologies like SNOMED CT. In the first part, a description is given of the current context of divergent and replicated efforts. Then is presented a "reference terminology representation" approach based on a formal terminology representation as an open source available in the public domain with diversity in the linguistic expressiveness of end users let to competing developers and researchers. The last part is devoted to the contribution of the standardisation process in healthcare terminology initiated by CEN/TC251 and supported now by the work of CEN/TC215/WG3 to this new approach which can be summarised as the practical realisation of an ontology.

Forms and Records Control↗

[Vulvar pain syndrome (vulvodynia)--dilemmas in terminology].

BACKGROUND: In recent years there has been increasing awareness of chronic vulvar pain, both in the medical and lay communities. The etiology of vulvar pain is largely unknown. Furthermore, there is no worldwide consensus regarding the terminology and classification of this condition, which makes it difficult to compare the results of different treatments. In 2003, following more than three decades of uncertainty, the terminology and classification of vulvar pain was re-established. AIM: To review the development of nomenclature for vulvar pain and the increasing understanding of its pathophysiology. METHODS: A literature review was conducted of articles related to the nomenclature of vulvar pain and vulvar diseases, and a summary of the world congresses of the International Society for the Study of Vulvovaginal Disease (ISSVD) from 1976 until 2003. RESULTS: In 1976, members of the ISSVD recognized vulvar pain as a unique entity, and called it burning vulva syndrome. In 1985, the ISSVD renamed this disorder "Vulvodynia" and classified it into two clinically distinctive subsets: dysesthetic vulvodynia and vestibulitis. However, recent studies failed to confirm an inflammatory pathogenesis, and the term vestibulitis was replaced by the term vestibulodynia at the 1999 ISSVD congress. In 2003, the ISSVD reviewed the terminology and used the term vulvodynia, which is further classified as either generalized or localized, and by the presence or absence of stimulus for pain. CONCLUSIONS: The re-establishment of the ISSVD terminology and classification in 2003 will help physicians and researchers improve the understanding of chronic idiopathic vulvar pain, and develop effective treatments.

Female↗

The development of a controlled medical terminology: identification, collaboration, and customization.

An increasing focus in health care is the development and use of electronic medical record systems to capture and store patient information. T-HELPER is an electronic medical record system that health care providers use to record ambulatory-care patient progress notes. These data are stored in an on-line database and analyzed by T-HELPER to provide users with decision support regarding patient eligibility for clinical trial protocols and assistance with continued protocol-based care. Our goal is to provide a system that enhances the process of identifying patients who are potentially eligible for clinical trials of experimental therapies in a clinic that is limited by the existence of a singular clinical trial coordinator. Effective implementation of such a system requires the development of a meaningful controlled medical terminology that satisfies the needs of a diverse community of providers all of who contribute to the health care process. The development of a controlled medical terminology is a process of identification, collaboration, and customization. We enlisted the help of collaborators familiar with the proposed work environment to identify user needs, to collaborate with our development team to construct the preliminary terminology, and to customize the controlled medical terminology to make it meaningful and acceptable to the clinic users.

Ambulatory Care↗

A Terminology Server for medical language and medical information systems.

GALEN is developing a Terminology Server to support the development and integration of clinical systems through a range of key terminological services, built around a language-independent, re-usable, shared system of concepts--the CORE model. The focus is on supporting applications for medical records, clinical user interfaces and clinical information systems, but also includes systems for natural language understanding, clinical decision support, management of coding and classification schemes, and bibliographic retrieval. The Terminology Server integrates three modules: the Concept Module which implements the GRAIL formalism and manages the internal representation of concept entities, the Multilingual Module which manages the mapping of concept entities to natural language, and the Code Conversion Module which manages the mapping of concept entities to and from existing coding and classification schemes. The Terminology Server also provides external referencing to concept entities, coercion between data types, and makes its services available through a uniform applications programming interface. Taken together these services represent a new approach to the development of clinical systems and the sharing of medical knowledge.

Artificial Intelligence↗

WWW-available conceptual integration of medical terminologies: the ONIONS experience.

We present the most applicable aspects of our research in the conceptual integration of terminologies. From past experience, we claim that the conceptualizations provided for terminological ontologies need to be philosophically and linguistically grounded. We developed ONIONS, a methodology for integrating domain terminologies by exploiting a library of generic ontologies. Our current focus is on flexible and cooperative modelling of terminological ontologies. We adopt modular and negotiable architectures of ontologies and some WWW-oriented tools, such as Ontolingua and Ontosaurus.

Computer Communication Networks↗

Branches of the vagus nerve destined for the heart and the adjoining great vessels in the house shrew, Suncus murinus, with reference to the terminology of the vagal cardiac branches.

In order to help to organize the understanding of the bewildering complexities of the innervation of the mammalian heart by the vagus nerve and to clear up of confusions as regards the vagus cardiac branches, we scrutinized these branches in the adult house shrew, Suncus murinus, under a stereomicroscope. A number of branches were given off from the vagus nerve not only to the heart, but also to the adjoining great vessels, both outflowing and inflowing. When compared from the developmental viewpoint, the basic conformations of these branches on two sides were found not to differ from each other, but rather presented a symmetrical configuration, the feature which has been ascertained also in mammalian embryos. Relying on developmental criteria, we classified them into the arterial porta-related and the venous porta-related groups, formulating a new terminology by naming them on the basis of their destination. This version of terminology allowed us to define the vagus cardiac branches of the house shrew more accurately than the current terminology (e.g., Nomina Anatomica), and seems to provide us a clue for clearing up confusions concerning the terminology of the vagus cardiac branches in mammals.

Animals↗

Thesauri and formal classifications: terminologies for people and machines.

Terminologies are now software. They are key components of the integration of electronic patient records, decision support systems and information retrieval systems. To be used as software, the different types of content in traditional terminologies must be separated, which we term here: conceptual, linguistic, inferential and pragmatic. The conceptual knowledge at the heart of the terminology needs to be expressed formally in order to provide a dependable framework for the other types of knowledge. Information left implicit in most existing coding and classification systems must be made explicit. The test of the resulting terminologies is how well they support software for key functions: including data entry, information retrieval, mediation, indexing, and authoring.

Abstracting and Indexing↗

The Copernican era of healthcare terminology: a re-centering of health information systems.

Health terminology and classifications have been an unseen backwater in healthcare practice and information systems development. Today however, the recognized need for comparable patient data is driving a new discovery about its strategic importance. Consistent patient descriptions and concept-centered data representations are crucial for efficient discovery of optimal treatments, best outcomes, and efficient practice patterns. The fabled linkage of knowledge sources at the time and place of care requires the conceptual intermediary of common terminology. A brief history overviewing the evolution of health classifications will provide the foundation for considering present and evolving health terminology developments. Their roles in health information systems will be characterized. Discussion will focus on the likely influences of the HIPAA legislation nationally and the new ISO Healthcare Informatics Technical Committee internationally, on terminology adaptation and incorporation.

Disease↗

A clinical terminology in the post modern era: pragmatic problem list development.

A brief review of the rich heritage of classifications and terminologies is the background for a description of the Mayo Clinic's clinical terminology development. Vender specific system constraints prompted the scope and style of an interim problem list vocabulary. We describe the sources and review process which led to a working terminology for use in a Computer-based Patient Record (CPR). Because terminology development is often subjective and metrics against which to measure the quality of individual human judgements are few, we decided to compare the selection of preferred terms made by general internists with those made by sub-specialists. A significant difference between a sub-specialist's assignment of preferred terms and a general internist's (948 vs. 2271, P < 0.001) was observed. Sub-specialists were less than half as likely as a generalist to designate a term as a preferred form. These results emphasize the need for sub-specialty editing when assigning preferred terms to concepts.

Disease↗

Perceptions of diagnostic terminology and cytopathologic reporting of fine-needle aspiration biopsies of thyroid nodules: a survey of clinicians and pathologists.

INTRODUCTION: Guidelines on thyroid fine-needle aspiration biopsy (FNABs) reporting calls for unambiguous diagnostic terminology in order to maximize treatment. This study evaluates how pathologists follow the guidelines and clinicians understand the diagnostic categories in terms of patient care. DESIGN: Survey 1 asked pathologists who perform/interpret FNABs which of "atypical," "indeterminate," "suspicious," and "nondiagnostic" they routinely use. Survey 2 asked clinicians who treat thyroid nodules to correlate these categories to the options of "negative FNAB/follow-up," "repeat FNAB," and "proceed to surgery." The anonymous, voluntary results were entered into a database and analyzed. MAIN OUTCOME: Pathologists' and clinicians' response rates were 70% and 35%, respectively. Survey 1: 27% of pathologists used three, 27% used one, and 44% used two categories. Survey 2: 98% clinicians would repeat the FNAB with a "nondiagnostic" and 96% opted for surgery with a "suspicious" diagnosis. "Indeterminate" prompted 58% to repeat the FNAB and 32% to send the patient to surgery. "Atypical" would lead 37% to repeat the FNAB and 52% to send the patient to surgery. CONCLUSIONS: Pathologists actively use the terminology "suspicious," "indeterminate," or "atypical," which cause confusion in some clinicians. These results support the need for a more standardized terminology for FNAB reporting and education of the clinicians on that terminology.

Biopsy, Fine-Needle↗

Reformulation of consumer health queries with professional terminology: a pilot study.

BACKGROUND: The Internet is becoming an increasingly important resource for health-information seekers. However, consumers often do not use effective search strategies. Query reformulation is one potential intervention to improve the effectiveness of consumer searches. OBJECTIVE: We endeavored to answer the research question: "Does reformulating original consumer queries with preferred terminology from the Unified Medical Language System (UMLS) Metathesaurus lead to better search returns?" METHODS: Consumer-generated queries with known goals (n=16) that could be mapped to UMLS Metathesaurus terminology were used as test samples. Reformulated queries were generated by replacing user terms with Metathesaurus-preferred synonyms (n=18). Searches (n=36) were performed using both a consumer information site and a general search engine. Top 30 precision was used as a performance indicator to compare the performance of the original and reformulated queries. RESULTS: Forty-two percent of the searches utilizing reformulated queries yielded better search returns than their associated original queries, 19% yielded worse results, and the results for the remaining 39% did not change. We identified ambiguous lay terms, expansion of acronyms, and arcane professional terms as causes for changes in performance. CONCLUSIONS: We noted a trend towards increased precision when providing substitutions for lay terms, abbreviations, and acronyms. We have found qualitative evidence that reformulating queries with professional terminology may be a promising strategy to improve consumer health-information searches, although we caution that automated reformulation could in fact worsen search performance when the terminology is ill-fitted or arcane.

Consumer Behavior↗

Integrating guidelines and the clinical record: the role of semantically constrained terminologies.

The extent to which protocols and guidelines will be used depends critically on how well they are integrated with existing medical records and each other. Effective integration requires consistent information structures and content, but if the union between components becomes too intimate it may restrict interaction with other applications. Such isolation leads to operational inefficiencies and can be financially unattractive. Systematic representation methods for protocols address part of the problem but are hampered by the unsuitability of existing medical terminologies; the effort required for bespoke development is prohibitive. Unifying and generalising terminological functions in a single "Terminology Server" that can support both construction of systems and their operational use promises to reduce development effort whilst allowing individual designers considerable independence. However, significant theoretical and practical questions remain about how far the problems of communication can be mitigated by a generalised, use-independent terminological system.

England↗

A general method for sifting linguistic knowledge from structured terminologies.

Morphological knowledge is useful for medical language processing, information retrieval and terminology or ontology development. We show how a large volume of morphological associations between words can be learnt from existing medical terminologies by taking advantage of the semantic relations already encoded between terms in these terminologies: synonymy, hierarchy and transversal relations. The method proposed relies on no a priori linguistic knowledge. Since it can work with different relations between terms, it can be applied to any structured terminology. Tested on SNOMED and ICD in French and English, it proves to identify fairly reliable morphological relations (precision > 90%) with a good coverage (over 88% compared to the UMLS lexical variant generation program). For English words with a stem longer than 3 characters, recall reaches 98.8% for inflection and 94.7% for derivation.

Linguistics↗

Data representation in healthcare: a design for a freely-available openly-developed international reference terminology for healthcare.

The importance of data representation in healthcare has been of concern for centuries. In the last fifty years there has been an increasing awareness of the need for formal representations of terminological systems. We propose that terminological system development should be consensus driven and the product of iterative open refinement in order to practically serve the needs of the healthcare community. The system of development and maintenance of such a system must involve recruitment of the best and the brightest in the medical community to take responsibility for insuring the accuracy and completeness of such an effort. We suggest a method for algorithmically building a starting point for such a reference terminology. Further we suggest a distributed authoring environment that would allow domain experts to contribute regardless of their location or language. Open intellectual contribution is the necessary ingredient for a consensus based international health reference terminology.

Algorithms↗

Anatomy of an earmold: a formal terminology.

The science of earmold (or hearing aid shell) modification has achieved a level that exceeds existing terminology. To date, there is no standardized terminology for various areas of the earmold and hearing aid shell. This article outlines a system of terminology that conforms with anatomic naming principles, retains current terminology where appropriate, and provides nomenclature for previously unnamed areas. A formal nomenclature should aid teaching and communication among professionals.

Ear, External↗

The 2001 Bethesda System: terminology for reporting results of cervical cytology.

OBJECTIVES: The Bethesda 2001 Workshop was convened to evaluate and update the 1991 Bethesda System terminology for reporting the results of cervical cytology. A primary objective was to develop a new approach to broaden participation in the consensus process. PARTICIPANTS: Forum groups composed of 6 to 10 individuals were responsible for developing recommendations for discussion at the workshop. Each forum group included at least 1 cytopathologist, cytotechnologist, clinician, and international representative to ensure a broad range of views and interests. More than 400 cytopathologists, cytotechnologists, histopathologists, family practitioners, gynecologists, public health physicians, epidemiologists, patient advocates, and attorneys participated in the workshop, which was convened by the National Cancer Institute and cosponsored by 44 professional societies. More than 20 countries were represented. EVIDENCE: Literature review, expert opinion, and input from an Internet bulletin board were all considered in developing recommendations. The strength of evidence of the scientific data was considered of paramount importance. CONSENSUS PROCESS: Bethesda 2001 was a year-long iterative review process. An Internet bulletin board was used for discussion of issues and drafts of recommendations. More than 1000 comments were posted to the bulletin board over the course of 6 months. The Bethesda Workshop, held April 30-May 2, 2001, was open to the public. Postworkshop recommendations were posted on the bulletin board for a last round of critical review prior to finalizing the terminology. CONCLUSIONS: Bethesda 2001 was developed with broad participation in the consensus process. The 2001 Bethesda System terminology reflects important advances in biological understanding of cervical neoplasia and cervical screening technology.

Female↗

Employment of the anatomical terminology of the Nomina Anatomica in the radiologic literature.

The purpose of this paper was to assess the relationship of the anatomical terms employed in the radiologic literature to the International Nomenclature derived from the Nomina Anatomica. A critical analysis was made of the anatomical terminology employed in three French and two American journals of radiology. In about 40% of the French journals, the International Anatomical Nomenclature was not adhered to, whereas in 50%, there was no difference in the terms encountered between the French traditional terminology and the French adaptation of the Nomina Anatomica. In contrast, a close adherence to the Nomina Anatomica was observed in the two American journals. The exceptions most frequently encountered are detailed. The aim and principles of the Nomina Anatomica, based on the Latin terminology and aimed at clarification and systematisation, are stressed. The advantages of employing the International Anatomical Nomenclature in medical papers, allowing easy understanding by foreign readers in a world of rapid information exchange are highlighted.

Anatomy↗

The standardization of terminology for researchers in female pelvic floor disorders.

The lack of standardized terminology in pelvic floor disorders (pelvic organ prolapse, urinary incontinence, and fecal incontinence) is a major obstacle to performing and interpreting research. The National Institutes of Health convened the Terminology Workshop for Researchers in Female Pelvic Floor Disorders to: (1) agree on standard terms for defining conditions and outcomes; (2) make recommendations for minimum data collection for research; and (3) identify high priority issues for future research. Pelvic organ prolapse was defined by physical examination staging using the International Continence Society system. Stress urinary incontinence was defined by symptoms and testing; 'cure' was defined as no stress incontinence symptoms, negative testing, and no new problems due to intervention. Overactive bladder was defined as urinary frequency and urgency, with and without urge incontinence. Detrusor instability was defined by cystometry. For all urinary symptoms, defining 'improvement' after intervention was identified as a high priority. For fecal incontinence, more research is needed before recommendations can be made. A standard terminology for research on pelvic floor disorders is presented and areas of high priority for future research are identified.

Fecal Incontinence↗