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The intimate mediator: a carer's experience of Alzheimer's.

This research arose out of a collaboration between a service user (M) and two researchers. Following M's invitation to us to explore issues surrounding a carer's experience of Alzheimer's, we jointly agreed a research strategy in which we would engage in a series of interviews with M, with the aim of developing insight into how the intimate carer's complex journey can support and benefit other family caregivers faced with similar challenges. Using a broadly hermeneutic-phenomenological method, three essential themes emerged to describe the carer's journey: (i) something is wrong; (ii) the challenging shared journey: being the carer; (iii) coping through meaning-making: advocacy. We arrive at a position which considers the unique role of an intimate carer as a 'liminal' figure between the private world of an Alzheimer's sufferer and the public world of health and social care systems. The paper concludes with a consideration of how the unique role of the intimate carer as mediator could be more respectfully involved as an ongoing knowledge source for care planning and treatment decisions. Specific areas of consideration in this regard include mechanisms for such user involvement in policy making, day-to-day care delivery, and developments in the support of other carers. We hope to highlight the 'intimacy' of this position and the distinctive benefits and challenges of such intimacy in providing a crucial level of user knowledge and 'evidence' for ongoing treatment decisions. We also hope to highlight the value and power of single-case study in generating useful insights for practice.

Alzheimer Disease↗

Towards integration of clinical decision support in commercial hospital information systems using distributed, reusable software and knowledge components.

PROBLEM: Clinicians' acceptance of clinical decision support depends on its workflow-oriented, context-sensitive accessibility and availability at the point of care, integrated into the Electronic Patient Record (EPR). Commercially available Hospital Information Systems (HIS) often focus on administrative tasks and mostly do not provide additional knowledge based functionality. Their traditionally monolithic and closed software architecture encumbers integration of and interaction with external software modules. Our aim was to develop methods and interfaces to integrate knowledge sources into two different commercial hospital information systems to provide the best decision support possible within the context of available patient data. METHODS: An existing, proven standalone scoring system for acute abdominal pain was supplemented by a communication interface. In both HIS we defined data entry forms and developed individual and reusable mechanisms for data exchange with external software modules. We designed an additional knowledge support frontend which controls data exchange between HIS and the knowledge modules. Finally, we added guidelines and algorithms to the knowledge library. RESULTS: Despite some major drawbacks which resulted mainly from the HIS' closed software architectures we showed exemplary, how external knowledge support can be integrated almost seamlessly into different commercial HIS. This paper describes the prototypical design and current implementation and discusses our experiences.

Abdominal Pain↗

BioMeKe: an ontology-based biomedical knowledge extraction system devoted to transcriptome analysis.

Semantic interoperability between knowledge bases in medicine, and knowledge base in genomics and molecular biology will lead to advances in fundamental research as well as to improved patient care. DNA chips strategy is used for transcriptome analysis in order to identify deregulated genes in physio-pathological conditions. The objective of the BioMedical Knowledge Extraction project (BioMeKe) is to develop a knowledge warehouse in the context of transcriptome analysis during liver diseases. Knowledge sources include ontologies, related terminologies and annotations linked towards public databases (e.g., SWISSPROT). BioMeKe has been developed to have access to information using systematic investigation upon a concept, gene, gene products, pathology, or any target keyword, and is based on the combination of several relevant resources: UMLS, GeneOntology, MeSH supplementary terms, GOA, and HUGO. Current efforts are focusing on exploiting this ontology-based Knowledge Extractor, to enrich the expression data on genes delivered by a liver specific DNA microarray for better assistance of analysis.

Databases, Genetic↗

Pathways to evidence-based reproductive healthcare in developing countries.

OBJECTIVE: Developing country clinicians are aware of the discourse of evidence-based medicine but heavily constrained in their ability to access and apply new knowledge. This study aimed to obtain primary descriptive data about access to and application of reproductive health-related medical knowledge in developing countries. DESIGN: Qualitative study using semi-structured interviews. SETTING: India and Yemen. SAMPLE: Forty-one doctors working in obstetrics, gynaecology, general practice and family planning services. METHODS: Interviews were tape recorded and transcribed verbatim. A theory-driven approach was conducted to carry out thematic analysis. MAIN OUTCOME MEASURES: Descriptions of experiences, attitudes and needs. RESULTS: Doctors felt the need to update their knowledge but this was not always achieved due to time and financial constraints. Alternative knowledge sources were described including the Internet, scientific meetings, medical family networks and speciality medical societies but access to these was limited by the expense of equipment, unfamiliarity with the technology and restricted advertisement of scientific meetings and conferences. Institutional hierarchy and conflict of generations were identified as barriers to change. Demoralisation was a common obstacle. On the positive side, involvement in medical education was a powerful driver for seeking new knowledge and applying research evidence to clinical practice. CONCLUSIONS: Priorities are to identify needs specific to different countries and medical settings in the developing world, access for all to full text journals and educational activities that fully engage practitioners in the early stages of their careers. Clinical teachers are the nodal group with the strongest incentive to obtain and use new knowledge.

Attitude of Health Personnel↗

The content and sources of maternal knowledge about the infant.

The author's purpose was to explore the knowledge that a primiparous mother acquires during the first 14 days postpartum about caretaking and personal characteristics of the infant. The study also examined the sources of this knowledge. The convenience sample consisted of 33 healthy, married, middle-class women. For caretaking knowledge, on postpartum days 1-6, mothers learned most about feeding, and on days 7-13 about administering daily care. For personal knowledge, on day 1 mothers learned most about infant physical characteristics and on days 2-13 about infant activity. Mothers acquired significantly more personal knowledge about their infant than caretaking knowledge, both daily and across the 2 weeks. Knowledge acquisition was highest during hospitalization. Maternal use of self was the dominant source for learning; however, nurses were the primary source for caretaking knowledge during hospitalization.

Adult↗

What do men who are at risk of osteoporosis know about osteoporosis in developing countries? A pilot study in Isparta, Turkey.

The aim of this study was to investigate the knowledge, health beliefs and the knowledge sources of osteoporosis in Turkish males who are at risk of secondary causes of osteoporosis. One hundred and sixty men who had one of the systemic diseases or drugs which negatively affects bone metabolism were included in the study. Patients were asked to fill in a self-administered questionnaire which was modified from a validated questionnaire for Turkish female patients with osteoporosis. Twenty-two patients (15.7%) had never heard of a disease named osteoporosis. The mean score for general knowledge was 31.86 +/- 20.56 (over 100 points). Only 20 (16.9%) patients had received information from a doctor. Seventy-three (61.8%) of the patients stated that osteoporosis may be seen in men and only 42 (35.6%) patients were aware that they had a risk factor for osteoporosis. Most of the patients were unable to identify significant risk factors. Statistically significant positive correlation was found between KOS and patients' education levels (r = 0.453, p < 0.01). The findings in our study show that Turkish men who are at risk of osteoporosis do not have sufficient knowledge about osteoporosis and its consequences. We conclude that low education level of our patients accounts for poor osteoporosis knowledge.

Aged↗

Mining terminological knowledge in large biomedical corpora.

Terminological knowledge of the biomedical domain is important for natural language processing (NLP) and information retrieval (IR) applications, and a number of terminological knowledge sources, such as LocusLink, GeneBank, and the UMLS, already exist. However, because of the tremendous amount of research activity in the field, new terms and symbols are continually being created, many of which are published in the literature, but are not available in any of the other resources. Therefore, effective mining of the literature for new terminology is critical for furthering NLP and IR applications. Abbreviations are widely used in the biomedical domain, and the understanding of abbreviations requires a terminological knowledge base that consists of abbreviations with their associated senses. In previous work, several methods have been developed for automatic construction of abbreviation knowledge bases from parenthetical expressions. However, these methods pair abbreviations and their expansions based on manually crafted patterns or rules. In this paper, we propose an automatic method, which is not based on patterns or rules but is based on the use of collocations, to extract a set of related terms from parenthetical expressions including abbreviations associated with their expansions and other types of related terms such as synonyms, or hyponyms etc. Our method is based on the observation that terms associated with parenthetical expressions i) are usually related, and ii) are often collocations because they tend to co-occur more often than expected by chance. Our method was applied to the collection of MEDLINE abstracts. The method and the results were evaluated using two collections: Berman's handcrafted abbreviation list and the LocusLink collection.

Abstracting and Indexing↗

HIV/AIDS knowledge and information sources among deaf and hearing college students.

A sample of 34 deaf undergraduate college students at Gallaudet University and 46 hearing undergraduate college students at the University of Maryland Baltimore County completed a questionnaire that asked about their knowledge and sources of information concerning the human immunodeficiency virus and acquired immunodeficiency syndrome (HIV/AIDS). The deaf students had significantly lower scores on an "HIV/AIDS Knowledge Index" than the hearing students. This difference could not be explained by the deaf students' gender, class standing, family structure, or father's or mother's education level. The deaf students obtained more of their information about HIV/AIDS from family and friends than the hearing students, who relied to a greater extent on teachers, television, and reading material. The interpersonal sources used by the deaf students are more prone to factual errors than formal sources. Deaf students need methods of educating themselves about HIV/AIDS that are more accurate and that recognize the importance of sources as well as the content of information.

Acquired Immunodeficiency Syndrome↗

Improvement of oral health knowledge in a group of visually impaired students.

PURPOSE: The aim of this study was to evaluate the effectiveness of a repeated oral health education programme on oral health knowledge and hygiene of visually impaired students. MATERIALS AND METHODS: The study was conducted at one of the two visually impaired boarding schools of Istanbul, Turkey. The number of subjects was 65, comprising 28 totally and 37 partially visually impaired students between 7 and 17 years of age. A 24-item verbal questionnaire was developed to record their general health, impairment, the socio-economic profile and education level of their parents, oral health knowledge, sources of information about oral health, awareness of sugar in-take/caries risk, frequency of dental check-ups and oral hygiene habits, as well as any difficulties they experienced thereby. They were given individual training on oral care three times with two-month intervals within the nine-month framework of the programme. To measure the oral hygiene status, plaque index (PI) and gingival index (GI) scores were recorded of all teeth at four sites throughout the sessions. After completion of the programme, the oral health knowledge of the students was evaluated using the same questionnaire to determine the effectiveness of the programme. RESULTS: Statistically significant improvements were found at the level of oral health knowledge and oral hygiene status both in totally and partially visually impaired students at the end of the study (p < 0.001) as compared with at the beginning. No significant difference was found between the knowledge of totally visually impaired and partially visually impaired students. CONCLUSION: It was concluded that with an appropriate programme, the oral health knowledge of visually impaired students could be improved. This programme, if conducted on a one-to-one basis, ensures clinical and statistical significance.

Adolescent↗

Protective medical legislation deficient knowledge of maternity (health and safety) rights for work-adjustment exists amongst flexible trainee doctors: is there a risk to maternal and foetal health?

OBJECTIVE: To assess awareness, identify knowledge source and evaluate uptake amongst doctors of "health and safety rights" (HSR) contained within the current European protective medical legislation for pregnant workers. STUDY DESIGN: A descriptive cross-sectional pilot study, by a postal questionnaire during the period 1998-1999, targeted 97 UK doctors (West Midlands region) after their first pregnancy. RESULTS: Of 67 respondents (response rate 73%), 41 (61%) were Registrars (SpR) and 25 (37%) SHOs: 80% work-schedules did not change during pregnancy. Only 11% (95% CI, 4-21%) of the doctors surveyed actually knew their maternity rights. 66.2% had no knowledge of maternity legislation; 80% of respondents had not taken up health and safety rights. Fifty-two percent (95% CI, 40-65%) reported maternal and neonatal complications. CONCLUSIONS: In a self-selected group of flexible trainees following their first pregnancy, only one in five female doctors have adequate knowledge about the legislative "health and safety rights" of work-schedule adjustment. A combination of reasons may contribute to the low uptake of these rights. The question of whether or not poor knowledge and uptake of legislative rights may be detrimental towards pregnancy and neonatal complications requires a large prospective study. An improvement in the knowledge of current maternity legislation could occur by targeting all medical students, all doctors, postgraduate trainers and National Health Service (NHS) employers.

Adult↗

Context-based ontology building support in clinical domains using formal concept analysis.

OBJECTIVE: Ontology in clinical domains is becoming a core research field in the realm of medical informatics. The objective of this study is to explore the potential role of formal concept analysis (FCA) in a context-based ontology building support in a clinical domain (e.g. cardiovascular medicine here). METHODOLOGY: We developed an ontology building support system that integrated an FCA module with a natural language processing (NLP) module. The user interface of the system was developed as a Protégé-2000 JAVA tab plug-in. A collection of 368 textual discharge summaries and a standard dictionary of Japanese diagnostic terms (MEDIS ver2.0) were used as the main knowledge sources. A preliminary evaluation was taken to show the usefulness of the system. RESULTS: Stability was shown on the MEDIS-based medical concept extraction with high precision. 73+/-14% (mean+/-S.D.) of the compound medical phrases extracted were sufficiently meaningful to form a medical concept from a clinical perspective. Also, 57.7% of attribute implication pairs (i.e. medical concept pairs) extracted were identified as positive from a clinical perspective. CONCLUSION: Under the framework of our ontology building support system using FCA, the clinical experts could reach a mass of both linguistic information and context-based knowledge that was demonstrated as useful to support their ontology building tasks.

Decision Support Systems, Clinical↗

The evolution of diabetes information systems.

Diabetes information systems have already evolved rapidly in recent years along a developmental pathway initiated by the St Vincent Declaration, fuelled by the rapid pace of IT development in the 1990s and now endorsed by the emerging NHS information strategy. They will be central to the delivery of 'patient-centred' care and essential to supporting and monitoring the diabetes national service framework implementation. Widespread experience has identified three key principles. Firstly the need for a core data set that supports both service delivery and quality development. Secondly, because of the multiprofessional, multisector nature of diabetes care, there is a need to reconcile information from many diverse sources into unitary diabetes care records. Thirdly the crucial importance of making data collection a by-product of every day care delivery (i.e. no duplicate data entry). The work of many local innovators, allied to the increasing experience of the Diabetes UK sponsored UKDIABS project has generated substantial expertise. With the aid of new extraction/analysis tools such as QUIDS and a consistent approach to assessment, this work has hopefully laid secure foundations for monitoring the implementation of the national service framework. Furthermore, parallel developments under the aegis of the National electronic Library for Health (NeLH) should enable those involved with diabetes care to access relevant knowledge and information with ease. Increasingly user friendly ways by which patients can interact with their electronic records and linked knowledge sources will create many new opportunities. Diabetes information systems are likely to be at the forefront of diabetes care delivery in the future, providing patients and professionals with timely and accurate data for the organization and delivery of care.

Data Collection↗

ARIANE: integration of information databases within a hospital intranet.

Large information systems handle massive volume of data stored in heterogeneous sources. Each server has its own model of representation of concepts with regard to its aims. One of the main problems end-users encounter when accessing different servers is to match their own viewpoint on biomedical concepts with the various representations that are made in the databases servers. The aim of the project ARIANE is to provide end-users with easy-to-use and natural means to access and query heterogeneous information databases. The objectives of this research work consist in building a conceptual interface by means of the Internet technology inside an enterprise Intranet and to propose a method to realize it. This method is based on the knowledge sources provided by the Unified Medical Language System (UMLS) project of the US National Library of Medicine. Experiments concern queries to three different information servers: PubMed, a Medline server of the NLM; Thériaque, a French database on drugs implemented in the Hospital Intranet; and a Web site dedicated to Internet resources in gastroenterology and nutrition, located at the Faculty of Medicine of Nice (France). Accessing to each of these servers is different according to the kind of information delivered and according to the technology used to query it. Dealing with health care professional workstation, the authors introduced in the ARIANE project quality criteria in order to attempt a homogeneous and efficient way to build a query system able to be integrated in existing information systems and to integrate existing and new information sources.

Computer Communication Networks↗

Survey of general practitioners' knowledge about Helicobacter pylori infection.

BACKGROUND: Helicobacter pylori, occurring throughout the world and causing gastroduodenal diseases, is one of the most common chronic bacterial agents in humans. The purpose of this study was to measure the general practitioners' (GPs) knowledge and practices pertaining to H. pylori infection. METHODS: A cross-sectional type questionnaire survey was conducted in all of 19 primary health care centres (PHCC) in Samsun, Turkey, between November 1 and December 31, 2003. The questionnaire was sent to 124 GPs and 109 (87.9 %) of those filled in. They were requested to answer the questions on the knowledge, sources of medical information, diagnostic tests and treatment to H. pylori. RESULTS: Medical journals were the most frequently used source of information on H. pylori, being cited by 86 (78.9%) of GPs. Ninety-two (84.4%) of the GPs reported having used one or more tests and 17 (15.6%) never used any test for the diagnosis of H. pylori infection. Only 9.8% had used stool antigen test for diagnosis. GPs reported that they would prescribe symptomatic treatment without ordering diagnostic tests for 29 (26.6%). 54.1% of the GPs explain that they sent patients with H. pylori infection to a specialist, and most used a triple drug regimen containing a PPI. Treatment duration varies between 7 to 28 days. 80.7 of the GPs treat patients for 14 days. CONCLUSION: GPs may not have enough knowledge about the importance of stool antigen test or possibility of usage of this test. GPs have not sufficient knowledge about the difference between symptomatic and asymptomatic individuals. It is thought that GPs preferred to treat the patients with suspected ulcer empirically or to send them to a specialist because of the limited diagnostic conditions. The efforts to educate the GPs about the algorithms regarding the management of H. pylori infection during post-graduation period should be improved in PHCCs.

Adult↗

The semantic metadatabase (SEMEDA): ontology based integration of federated molecular biological data sources.

A system for "intelligent" semantic integration and querying of federated databases is being implemented by using three main components: A component which enables SQL access to integrated databases by database federation (MARGBench), an ontology based semantic metadatabase (SEMEDA) and an ontology based query interface (SEMEDA-query). In this publication we explain and demonstrate the principles, architecture and the use of SEMEDA. Since SEMEDA is implemented as 3 tiered web application database providers can enter all relevant semantic and technical information about their databases by themselves via a web browser. SEMEDA' s collaborative ontology editing feature is not restricted to database integration, and might also be useful for ongoing ontology developments, such as the "Gene Ontology" [2]. SEMEDA can be found at http://www-bm.cs.uni-magdeburg.de/semeda/. We explain how this ontologically structured information can be used for semantic database integration. In addition, requirements to ontologies for molecular biological database integration are discussed and relevant existing ontologies are evaluated. We further discuss how ontologies and structured knowledge sources can be used in SEMEDA and whether they can be merged supplemented or updated to meet the requirements for semantic database integration.

Databases, Genetic↗

Modeling medical content for automated summarization.

Medical information is available from a variety of new online resources. Given the number and diversity of sources, methods must be found that will enable users to quickly assimilate and determine the content of a document. Summarization is one such tool that can help users to quickly determine the main points of a document. Previous methods to automatically summarize text documents typically do not attempt to infer or define the content of a document. Rather these systems rely on secondary features or clues that may point to content. This paper describes text summarization techniques that enable users to focus on the key content of a document. The techniques presented here analyze groups of similar documents in order to form a content model. The content model is used to select sentences forming the summary. The technique does not require additional knowledge sources; thus the method should be applicable to any set of text documents.

Automation↗

Structured data management--the design and implementation of a web-based video archive prototype.

In response to the lack of readily available multimedia rich medical knowledge sources to support medical education and patient care, we designed and implemented a web-based video publishing platform. In order to promote the development of high-quality, up-to-date educational content, we have devised a scalable structure that allows online submissions and continuous updating of video and accompanying textual descriptions. Our goal is to enable experts in varied medical domains to collaborate in the construction of a video library using an intuitive web-based interface. Neurologists at Stanford built a well-annotated neurology video collection that initially emphasized childhood and adult movement disorders. The collection may be accessed either as a stand-alone resource or as part of the Stanford Skolar MD, an integrated online medical knowledge provider. This manuscript discusses the design framework and implementation details of structured media content development. We present examples illustrating media data collection, content indexing using UMLS concepts, media storage, and web presentation.

Abstracting and Indexing↗

Modeling microbial growth within food safety risk assessments.

Risk estimates for food-borne infection will usually depend heavily on numbers of microorganisms present on the food at the time of consumption. As these data are seldom available directly, attention has turned to predictive microbiology as a means of inferring exposure at consumption. Codex guidelines recommend that microbiological risk assessment should explicitly consider the dynamics of microbiological growth, survival, and death in foods. This article describes predictive models and resources for modeling microbial growth in foods, and their utility and limitations in food safety risk assessment. We also aim to identify tools, data, and knowledge sources, and to provide an understanding of the microbial ecology of foods so that users can recognize model limits, avoid modeling unrealistic scenarios, and thus be able to appreciate the levels of confidence they can have in the outputs of predictive microbiology models. The microbial ecology of foods is complex. Developing reliable risk assessments involving microbial growth in foods will require the skills of both microbial ecologists and mathematical modelers. Simplifying assumptions will need to be made, but because of the potential for apparently small errors in growth rate to translate into very large errors in the estimate of risk, the validity of those assumptions should be carefully assessed. Quantitative estimates of absolute microbial risk within narrow confidence intervals do not yet appear to be possible. Nevertheless, the expression of microbial ecology knowledge in "predictive microbiology" models does allow decision support using the tools of risk assessment.

Bacteria↗