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The value of questionnaires aimed at key informants, and distributed through an existing administrative system, for rapid and cost-effective health assessment.

The requirement for a careful interview set-up in the classical key-informant approach considerably limits its extension to a larger scale. However, the administration of simplified questionnaires entirely through an existing administrative system can provide an alternative approach and become a valuable tool for fast and cost-efficient community health assessment. This methodology relies on a well-structured and working administrative system, and is restricted to health problems that are well and distinctly perceived by community members. It gives mainly qualitative results, and can therefore be used to single out rapidly and inexpensively high-risk and low-risk units. The biomedical screening of a large number of negative units can thus be avoided, and available resources can be concentrated on the positive ones. An extensive validation of this "indirect" approach by standardized biomedical measurements is a crucial requirement for its usefulness. In addition to biomedical information, questionnaires also provide information on the perception and prioritization of community health problems, which is of interest for health planning.

Child↗

A randomised trial of two information packages distributed to new cancer patients before their initial appointment at a regional cancer centre.

The purpose of this study was to evaluate the extent to which a new patient information package (NPIP) or a mini version of the same package (mini-NPIP) reduces emotional distress and meets the informational needs of patients arriving at a tertiary cancer centre for the first time. A comprehensive package, NPIP, consisting of procedural information regarding cancer centre location, description of the health care team, treatment services, research, educational activities, accommodation and community services provided at the centre; and a condensed version of the same package, mini-NPIP, were developed. Consecutive patients with newly diagnosed breast, gynaecological, lung and prostate cancer, referred to the centre for the first time were prerandomised to receive NPIP, mini-NPIP or no information package. Patients randomised to NPIP or mini-NPIP were mailed the information package at least one week before their first appointment. On arrival at the centre, patients were administered the Brief Symptom Inventory (BSI) which measures psychological distress, and interviewed regarding preferences for information and acceptability of the information packages. Of 465 randomised patients, 161 were excluded post-randomisation and 304 completed the entire interview: 100 were randomised to the NPIP, 102 to the mini-NPIP and 102 to the control group. Emotional distress as measured by the BSI was similar for all groups (P = 0.98). Most patients preferred to receive the information (98%), receive it before the first appointment (84%) and by mail (79%). These preferences were more evident for those given the information packages. The majority of patients found the information packages easy to understand (88%) and useful (89%), and no differences were detected between packages. The cost of production and dissemination of NPIP was more than double the cost for mini-NPIP: $ 8.93 vs $ 3.98 (Canadian dollars) per patient. For patients presenting to a cancer centre for the first time, packages of procedural information do not appear to reduce psychological distress, but are preferred by patients. Given the cost of producing NPIP, mini-NPIP is the preferred approach.

Feasibility Studies↗

Beyond the hyperactive molecule: search, salvage and visualization of chemical information from the Internet.

The established exchange mechanisms for chemical information are under attack from new information distribution channels on the Internet. Increasingly chemical information is distributed by means of WWW pages and similar media. However, most of this information is still primarily intended for human browsing. The search for chemical information and the reuse of encoded structures and their attached data is complicated and often impossible because of the unorganized structure of the information and the lack of tools for search, display and salvage of chemical information to help with the extraction of reusable information from Webspace. The situation is complicated by the lack of standards and formats powerful enough to encode in computer-readable form sophisticated chemical information and informational relationships. The rapid evolution of information exchange mechanisms on the Internet is another problem. The unsettled situation demands a new generation of intelligent chemistry-aware tools for information retrieval from the Net. These tools must be capable of adapting to new trends and information models as well as new information types without constant redesign and should be themselves extendable and updatable by components distributed via the same network connections as the chemical data they are supposed to deal with. We introduce a set of tools which encapsulate the established Internet (especially WWW) information transfer and visualization methods and extend them to a new level of chemical information handling.

Chemistry↗

Size distribution of "informational" RNA.

Previous investigations suggested that the size of "informational" or "messenger" RNA was confined to sedimentation rates lying between 8 and 14S. These involved procedures permitting extended contact of the RNA with enzymatically active extracts. The present study re-examined the size distribution of T2-complementary RNA isolated by a method which minimized enzymatic degradation. A much greater diversity in size distribution (4S to 25S) was observed. Experiments are described indicating that 8 to 12S informational RNA does not readily attach to the 16S and 23S ribosomal components under the conditions used for sedimentation analysis.

Escherichia coli↗

Magnetic susceptibility quantitation with MRI by solving boundary value problems.

Magnetic susceptibility measurement is of considerable research interest in MRI and MRS. A rigorous method was previously developed to quantify the susceptibility of an arbitrarily shaped uniform object in an inhomogeneous external field. However, it requires using the field distribution information on a spherical surface or shell in the surrounding homogeneous medium enclosing the object. In this work, a new approach was developed through solving the boundary value problems of the Laplace equation, which has an advantage that the boundary providing the necessary field distribution information can have an arbitrary shape. This method has been validated on rectangular boundaries with both numerical simulation as well as experimental data. It has also been realized that MRI provides an experimental means of solving some boundary value problems of partial differential equations, if proper boundary condition can be set up.

Computer Simulation↗

Expert and consumer evaluation of patient medication leaflets provided in U.S. pharmacies.

OBJECTIVE: Evaluate the distribution and quality of patient medication leaflets provided in U.S. pharmacies. DESIGN: Observational. SETTING: United States. PARTICIPANTS: 384 randomly selected community pharmacies in 44 states. INTERVENTIONS: Professional shoppers (acting as patients) presented four new prescriptions to study pharmacies. MAIN OUTCOME MEASURES: Medication leaflets obtained by shoppers were evaluated by expert and consumer raters using criteria specified in federal law mandating distribution of useful written information to 95% of individuals receiving new prescriptions by 2006. RESULTS: Leaflets were provided by pharmacies with 89% of 1,536 prescriptions presented by professional shoppers posing as patients. Leaflet quality varied: 95% of leaflets received high ratings on accuracy, but only 19% received high ratings on the specificity of directions. Fewer than 10% of all leaflets met quality criteria regarding contraindications, precautions, and how to avoid harm. One fourth of all leaflets had poor print size, according to the shoppers. CONCLUSION: Additional efforts are needed to meet federally mandated information distribution and quality goals by 2006.

Atenolol↗

A multiplex allele-specific primer extension assay for forensically informative SNPs distributed throughout the mitochondrial genome.

The typing of single nucleotide polymorphisms (SNPs) located throughout the mitochondrial genome (mtGenome) can help resolve individuals with an identical HV1/HV2 mitotype. A set of 11 SNPs selected for distinguishing individuals of the most common Caucasian HV1/HV2 mitotype were incorporated in an allele specific primer extension assay. The assay was optimized for multiplex detection of SNPs at positions 3010, 4793, 10211, 5004, 7028, 7202, 16519, 12858, 4580, 477 and 14470 in the mtGenome. Primers were designed to allow for simultaneous PCR amplification of 11 unique regions in the mtGenome and subsequent primer extension. By enzymatically incorporating fluorescently labeled dideoxynucleotides (ddNTPs) onto the 3' end of the extension primer, detection can be accomplished with a capillary-based electrophoresis (CE) platform common in most forensic laboratories. The electrophoretic mobility for the extension primers was compared in denaturing POP4 and POP6 CE running buffers. Empirical adjustment of extension primer concentrations resulted in even signal intensity for the 11 loci probed. We demonstrate that the assay performs well for heteroplasmy and mixture detection, and for typical mtDNA casework samples with highly degraded DNA.

Alleles↗

Six methodological steps to build medical data warehouses for research.

PURPOSE: We propose a simple methodology for heterogeneous data collection and central repository-style database design in healthcare. Our method can be used with or without other software development frameworks, and we argue that its application can save a relevant amount of implementation effort. Also, we believe that the method can be used in other fields of research, especially those that have a strong interdisciplinary nature. BACKGROUND: The idea emerged during a healthcare research project, which consisted among others in grouping information from heterogeneous and distributed information sources. We developed this methodology by the lessons learned when we had to build a data repository, containing information about elderly patients flows in the UK's long-term care system (LTC). DESIGN: We explain thoroughly those aspects that influenced the methodology building. The methodology is defined by six steps, which can be aligned with various iterative development frameworks. We describe here the alignment of our methodology with the RUP (rational unified process) framework. The methodology emphasizes current trends, as early identification of critical requirements, data modelling, close and timely interaction with users and stakeholders, ontology building, quality management, and exception handling. RESULTS: Of a special interest is the ontological engineering aspect, which had the effects with the highest impact after the project. That is, it helped stakeholders to perform better collaborative negotiations that brought better solutions for the overall system investigated. An insight into the problems faced by others helps to lead the negotiators to win-win situations. We consider that this should be the social result of any project that collects data for better decision making that leads finally to enhanced global outcomes.

Computer Communication Networks↗

Semantic integration in healthcare networks.

A seamless support of information flow for increasingly distributed healthcare processes requires to integrate heterogeneous IT systems into a comprehensive distributed information system. Different standards contribute to ease this integration. In a research project focussing on the development of a reference architecture for inter-institutional health information systems, we identified concurring standards currently in use. We therefore categorized these integration standards by distinguishing between technical and semantic integration on the one hand, and data and functional integration on the other hand. In addition, standards for semantic integration are roughly categorized according to their scope. By placing standards into a corresponding matrix a "semantic gap" is revealed, which cannot be covered by standards as it contains volatile medical concepts. As a conclusion, it is recommended to conceptually consider the necessity of system evolution in system architectures and also in future integration standards.

Hospital Information Systems↗

Challenges in data collection, analysis, and distribution of information in community coalition demonstration projects.

PURPOSE: This article summarizes the experiences of 13 grantees funded by the Centers for Disease Control and Prevention under the Community Coalition Partnership for the Prevention of Teenage Pregnancy in collecting, analyzing, and disseminating data as required under the requirements of this community-based demonstration project. While describing the challenges associated with these activities, this article suggests how future demonstration projects can better support both centralized and locally based data collection and analysis and enhance their usefulness for various audiences. METHODS: A multi-method data collection approach was employed that included: (a) a systematic review of semiannual progress reports submitted by the grantees to CDC between 1998 and 2002, (b) telephone interviews with program directors and evaluators and (c) site visits to four of the 13 grantee locations. In all, 46 individuals were interviewed, for an average of 3.5 respondents per grantee site. Data collected for this article focused on three data collection/analysis activities required as part of the Partnership: needs assessments conducted during the planning phase of the project, the collection of cross-site indicator data and project-specific studies. RESULTS: Grantees from the 13 Partnership communities indicated that two of the data collection/analysis requirements (the needs and assets assessments and project-specific studies) were useful and should be included in future demonstration projects. The collection of cross-site indicator data was found to be more challenging. Across all areas of data collection/analysis, the grantees' efforts were complicated by data collection challenges, difficulties conducting studies of local programs, and uncertainties about how local efforts fit with national goals for the demonstration projects. CONCLUSION: The data collection/analysis activities within the Partnership were viewed by the grantees as being both supportive of project efforts, but also challenging. On the positive side, the presence of community-based evaluators helped the grantees to profile community needs, identify program interventions, provide participant feedback, and track community mobilization efforts. Collection of the cross-site indicator data was difficult for many of the grantees and not always connected to locally determined objectives. The value of these activities can be enhanced in the future if greater attention is given to creating more clearly defined goals at the demonstration project level and to providing guidance on scientifically valid data collection and analysis techniques to maximize the usefulness of local efforts.

Adolescent↗

Distribution of information in biomedical abstracts and full-text publications.

MOTIVATION: Full-text documents potentially hold more information than their abstracts, but require more resources for processing. We investigated the added value of full text over abstracts in terms of information content and occurrences of gene symbol--gene name combinations that can resolve gene-symbol ambiguity. RESULTS: We analyzed a set of 3902 biomedical full-text articles. Different keyword measures indicate that information density is highest in abstracts, but that the information coverage in full texts is much greater than in abstracts. Analysis of five different standard sections of articles shows that the highest information coverage is located in the results section. Still, 30-40% of the information mentioned in each section is unique to that section. Only 30% of the gene symbols in the abstract are accompanied by their corresponding names, and a further 8% of the gene names are found in the full text. In the full text, only 18% of the gene symbols are accompanied by their gene names.

Abstracting and Indexing↗

Distribution of informal and formal home help for elderly people in Sweden.

We examined the effects of functional ability and various sociodemographic characteristics of 553 elderly persons on their need for domestic assistance. The Sickness impact Profile was used to assess functional ability. Multiple logistic regression identified the following statistically significant determinants of informal home help (including various practical activity of daily living [ADL] chores): poor physical status, age greater than 85 years, male gender, not living alone, and living in a rural district. The following determinants of formal home help manifested themselves: poor physical status, male gender, and living alone. Physical status, age, gender, and district of domicile were independently associated with overall use of home help.

Activities of Daily Living↗

Gene regulatory network structure informs the distribution of perturbation effects.

Gene regulatory networks (GRNs) govern many core developmental and biological processes underlying human complex traits. Even with broad-scale efforts to characterize the effects of molecular perturbations and interpret gene coexpression, it remains challenging to infer the architecture of gene regulation in a precise and efficient manner. Key properties of GRNs, like hierarchical structure, modular organization, and sparsity, provide both challenges and opportunities for this objective. Here, we seek to better understand properties of GRNs using a new approach to simulate their structure and model their function. We produce realistic network structures with a novel generating algorithm based on insights from small-world network theory, and we model gene expression regulation using stochastic differential equations formulated to accommodate modeling molecular perturbations. With these tools, we systematically describe the effects of gene knockouts within and across GRNs, finding a subset of networks that recapitulate features of a recent genome-scale perturbation study. With deeper analysis of these exemplar networks, we consider future avenues to map the architecture of gene expression regulation using data from cells in perturbed and unperturbed states, finding that while perturbation data are critical to discover specific regulatory interactions, data from unperturbed cells may be sufficient to reveal regulatory programs.

Gene Regulatory Networks↗