Search PubMed⌕ Search

SEARCH · Search PubMed

Results for “data accessibility”

Search indexed PubMed citations on genomics, clinical trials, systematic reviews and public health. Explore titles, authors and supplied subject terms, then open the PubMed record.

Quote a phrase for an exact phrase match. Source license links do not imply unrestricted reuse.

At least 775 records · Page 43Linked to original sources
PubMed1983

Issues in the accessibility and confidentiality of patient records.

Traditional understandings of confidentiality are no longer sufficient to deal with the privacy issues raised by a modern health care system. Patient data are increasingly kept by large and relatively faceless institutions. Disclosure of health information is not an exception, but a matter of daily routine, not only for uses within the health care system itself, but also for various social purposes. This paper highlights a number of issues, related to these structural changes. A distinction is made between four main problem areas: basic issues, collection and keeping of data, patient access to records, disclosure of individually identifiable data. Under each heading, four issues are discussed.

Confidentiality↗
PubMed2004

Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study.

OBJECTIVES: Recent legislative changes within the United Kingdom have stimulated professional debate about access to patient data within research. However, there is currently little awareness of public views about such research. The authors sought to explore attitudes of the public, and their lay representatives, towards the use of primary care medical record data for research when patient consent was not being sought. METHODS: 49 members of the public and four non-medical members of local community health councils in South Wales, UK gave their views on the value and acceptability of three current research scenarios, each describing access to data without patient consent. RESULTS: Among focus group participants, awareness of research in primary care was low, and the appropriateness of general practitioners as researchers was questioned. There was general support for research but also concerns expressed about data collection without consent. These included lack of respect and patient control over the process. Unauthorised access to data by external agencies was a common fear. Current data collection practices, including population based disease registers elicited much anxiety. The key informants were equally critical of the scenarios and generally less accepting. CONCLUSIONS: This exploratory study has highlighted a number of areas of public concern when medical records are accessed for research without patient consent. Public acceptability regarding the use of medical records in research cannot simply be assumed. Further work is required to determine how widespread such views are and to inform those advising on confidentiality issues.

Access to Information↗
PubMed2003

Clinical and Doppler ultrasonography data of a polyurethane vascular access graft for haemodialysis: a prospective study.

BACKGROUND: Absence of a permanent vascular access in most patients starting haemodialysis remains a cause of high morbidity and costs. This study obtained new clinical and colour Doppler ultrasound (CDU) data of a polyurethane vascular access graft (PVAG) proposing early post-operative cannulation. METHODS: Baseline characteristics were determined in 15 patients and the PVAGs were evaluated prospectively including first cannulation, patency and complications. CDU was used post-operatively and after 1 year for assessing graft morphology and access blood flow. RESULTS: PVAGs were cannulated at a median of 4 days post-operatively. The 1-year primary patency of the PVAG was 66.7%. During the 15 months observation three grafts thrombosed, one was replaced because of infection and one because of ischaemia. CDU measurements at the feeding brachial artery revealed a mean initial access volume flow of 773+/-89 ml/min, being significantly higher in patients without thrombosis compared to patients with thrombotic events (930+/-90 vs 375+/-143 ml/min, P<0.05). The initial inability to directly monitor PVAGs by CDU changed at sites of frequent centesis, where Doppler signals and luminal morphology could be evaluated in the follow up examination. CONCLUSIONS: The PVAG offers early access for urgent haemodialysis. CDU for access volume flow measurement at the feeding brachial artery contributes to predict access thrombosis. Direct non-invasive graft imaging is limited and the ultrasonographical changes in the polyurethane material enabling graft monitoring after repeated cannulation might indicate an injury of the graft with increased risk for access failure.

Adult↗
PubMed1991

Medical record review in an employee cancer screening clinic.

Documentation was evaluated through a series of chart reviews in the University of Texas M.D. Anderson Cancer Center's employee cancer screening clinic. One hundred charts were reviewed for three periods: 1987, before a QA program was established; 1988, during the QA program's introduction; and 1989, when chart review elements were identified. Documentation increased across these periods, with a significant increase for 10 of the 32 elements across at least two periods. However, mean follow-up time (initial examination to referral and communication of test results) did not vary across time, averaging 14 days. A new computer-based data system should help reduce follow-up time and facilitate access to data on patient compliance regarding tests and referrals.

Adolescent↗
PubMed2005

Design of a description language for generating wrapper to collect biological data.

The biological data are scattered in various areas with various formats and they are changing continuously. Therefore, data integration becomes an important issue to provide researcher a dynamic access of data. In the data integration process, the method of extracting heterogeneous data dynamically from the data source is an essential part. Data extraction method using wrapper can provide flexibility and extensibility to an integration system.

Computational Biology↗
PubMed2005

Empowering humanitarian medical development using grid technology.

BACKGROUND: The training of local clinicians is the best way to raise the standard of medical knowledge in developing countries. This requires transferring skills, techniques and resources. OBJECTIVES: Grid technology opens new perspectives for preparation and follow-up of medical missions in developing countries as well as support to local medical centers in terms of teleconsulting, telediagnosis and patient follow-up. Indeed, grids allow to hide the complexity of handling distributed data in such a way that physicians will be able to access patient data while ignoring where these data are stored. METHODS: To meet requirements of a development project of the French NPO Chain of Hope in China, we propose to deploy a grid-based federation of databases. FIRST RESULTS AND CONCLUSIONS: A first protocol was established for describing the patients' pathologies and their pre- and post-surgery states through a web interface in a language-independent way. This protocol was evaluated by French and Chinese clinicians during medical missions in the fall of 2003. The first sets of medical patients recorded in the databases will be used to evaluate grid implementation of services.

Altruism↗
PubMed2005

Peripheral quantitative computed tomography of the distal radius in young subjects - new reference data and interpretation of results.

Application of bone densitometry to clinical use requires the availability of accessible reference data and is helped by an interpretative framework that is based on bone physiology. The aim of this contribution is to provide both reference data and help in the interpretation of results for peripheral quantitative computed tomography (Stratec XCT2000 performed at the distal radius of young subjects. Data from a previous reference data study on 478 subjects between 6 and 40 years were re-analyzed and smooth curves were fitted. The corresponding equations allow for calculation of age- and sex-specific z-scores of bone mineral content, volumetric bone mineral density (vBMD) of the trabecular compartment, vBMD of the entire radial cross-section, total cross-sectional area and cortical thickness. These data should facilitate the clinical use of peripheral quantitative computed tomography in young subjects.

Adolescent↗
PubMed2000

Access and equity in the provision of general practitioner services for women in Australia.

OBJECTIVE: To assess geographical equity in the availability, accessibility and out-of-pocket costs of general practitioner (GP) services for women in Australia. METHOD: Data on general practice consultations during 1995 and 1996 for women aged 18-23 years (n = 5,260), 45-50 years (n = 7,898) and 70-75 years (n = 6,542) in the Australian Longitudinal Study on Women's Health were obtained from the Health Insurance Commission. A sub-study of 4,577 participants provided data on access to health services. RESULTS: Older women were more likely to have no out-of-pocket costs for their GP consultations, but in all age groups, the proportion was lower in rural areas than in urban areas (older age: 60% rural areas, 76% capital cities; mid-age: 24% rural areas, 40% capital cities; young age: 35% rural areas, 52% capital cities). Among mid-aged women, the median out-of-pocket cost per consultation ranged from $2.11 in capital cities to $6.48 in remote areas. Women living in rural and remote areas gave lower ratings for the availability, accessibility and affordability of health services than women living in urban areas. CONCLUSIONS: This study has shown a striking gradient in financial and nonfinancial barriers to health care associated with area of residence. IMPLICATIONS: The geographical imbalance in the supply and distribution of GP services in Australia has long been recognised but inequities in the affordability of services must also be addressed. Longitudinal survey data and Health Insurance Commission data provide a means to evaluate policies designed to improve access to health services in rural and remote areas.

Adolescent↗
PubMed2003

Using disease registries for pharmacoepidemiological research: a case study of data from a cystic fibrosis registry.

BACKGROUND: The Epidemiologic Registry of Cystic Fibrosis (ERCF) was a multicentre, longitudinal follow-up project of cystic fibrosis patients enrolled at some 200 centres in nine European countries between 1994 and 1999. PURPOSE: We aimed to assess and improve the quality of a subset of data from the ERCF relating to seven English centres (1184 patients), prior to using the data for a long-term cost-effectiveness analysis of dornase alfa (Pulmozyme). Specifically we wanted to assess the completeness and accuracy of the data and the comparability of cases across centres. METHODS: We used a subset of ERCF data relating to seven UK cystic fibrosis (CF) centres. Following initial data editing, key variable data from a sample of patients from five centres were subjected to a detailed verification of ERCF data against original data sources available in the centres. Disagreements between ERCF reports and original data sources were identified and corrected in the study dataset. In addition, centre staff were questioned about relevant clinical and recording practices. RESULTS: Thanks to detailed routine data checking procedures on key variables operated by the ERCF, the rates of disagreement between ERCF data and original data as identified in our verification process on the assessed variables are generally low (0.4-3.7%). Some outcome variables (deaths, hospitalisations) seem to be under-reported by some centres. Episodes of pulmonary exacerbation are difficult to identify and also to verify. Twenty-four patients were registered twice (consecutively in two different centres). There were some differences between centres in their interpretation of recording rules. CONCLUSIONS: Researchers seeking to use disease registry data should consider detailed data quality review processes. Apart from data accuracy, reliable definitions of both critical events as well as their timing are important. The degree of under-reporting, particularly of outcome variables, should be estimated. Information on local clinical and reporting practices is necessary to interpret multi-centre data. Data protection issues may limit the possibilities for detailed data quality assessments of secondary data, as does the accessibility of original data for verification purposes. Our experiences and recommendations may be valuable for those intending to use disease registry data as well as those devising and operating such registries.

Adult↗
PubMed1984

3D Display of stillbirth in Indonesian obstetrics Part 4: Contraception as preventive determinant?

The addition of contraception to five controls (1) of the risk of SB did not alter the previous finding: antenatal visits to emerge apparently as the main determinant of late fetal survival in Indonesian university obstetrics. Parts 1-4 are the basis for inquiring into the effects of parity and education, completing thus an OCTET control model of SB. The inquiry may also be expanded by computerized multivariate analysis; but the strongest determinants should then be used in a control system for 3D display of the SB risk for medical/paramedical education. The professional providers of both "Service and Data" (PSD) need early access to their data in order to apply implications to their service job (5).

Contraception↗
PubMed2006

The role of gene expression profiling in the clinical management of ovarian cancer.

Several studies have addressed the clinical value of gene expression profiling in the field of ovarian cancer. This paper reviews the current status of knowledge that can be derived from such studies. Gene expression profiles can be used to reveal sets of genes that can distinguish normal ovarian tissue from invasive ovarian carcinomas. Independent validation of these sets may result in the identification of (a set of) markers valuable for the detection in an early stage. Microarray analysis has shown that different histological subtypes of ovarian cancer might be partly reflected by a different aetiology through the deregulation and activation of different pathways. In addition, this heterogeneity could therefore also lead to different tumour behaviours. Worldwide, the combination of paclitaxel and platinum chemotherapy has been incorporated in the standard protocol for the management of patients with advanced stage ovarian cancer, although the outcome in individual patients is uncertain. Gene expression profiling was found to be a prognostic tool with respect to chemosensitivity and had a predictive performance of 78-86%. With increasing numbers of data from published reports, access to these data for the reproducibility of its results and pooling becomes more and more important and will possibly lead to more individualisation of therapy.

Female↗
PubMed2005

Network thinking in ecology and evolution.

Although pairwise interactions have always had a key role in ecology and evolutionary biology, the recent increase in the amount and availability of biological data has placed a new focus on the complex networks embedded in biological systems. The increased availability of computational tools to store and retrieve biological data has facilitated wide access to these data, not just by biologists but also by specialists from the social sciences, computer science, physics and mathematics. This fusion of interests has led to a burst of research on the properties and consequences of network structure in biological systems. Although traditional measures of network structure and function have started us off on the right foot, an important next step is to create biologically realistic models of network formation, evolution, and function. Here, we review recent applications of network thinking to the evolution of networks at the gene and protein level and to the dynamics and stability of communities. These studies have provided new insights into the organization and function of biological systems by applying existing techniques of network analysis. The current challenge is to recognize the commonalities in evolutionary and ecological applications of network thinking to create a predictive science of biological networks.

Journal Article↗
PubMed1997

Pancreatic cancer and comparison of a hospital-based tumor registry with a National Cancer Data Base.

BACKGROUND: The Commission on Cancer of the American College of Surgeons has called upon institutions providing cancer care to compare practice patterns and outcomes with the National Cancer Data Base (NCDB). Using data from the Virginia Mason Tumor Registry (VMTR), we sought to compare our pancreatic cancer care patterns with those reported nationally, while critically evaluating the accuracy and usefulness of our registry. METHODS: A review of the 906 computerized patient files in the VMTR from 1973 to 1995 was performed, with more detailed data on patients from the last 5 years retrieved from 224 manual abstracts. These data were compared with the 1991 NCDB for pancreatic cancer. RESULTS: The percent of cases according to AJCC stage in the NCDB (n = 9,715) versus the VMTR (n = 149), respectively, with cases of unknown stage excluded, were stage I 22% versus 22%, stage II 9% versus 12%, stage III 17% versus 28% (P <0.05) stage IV 52% versus 38% (P <0.05). One-third of the cases in the VMTR 1991 to 1995 were of unknown stage; number of cases with unknown stage for NCDB was 26.6%. The percent of surgical procedures for the NCDB (n = 7,802) versus the VMTR (n = 224), respectively, was pancreatectomy 14% versus 11%, local excision 1% versus 0%, no cancer-directed surgery 83% versus 89% (P <0.05), unknown 2% versus 0% (P <0.05). The actuarial relative survival rates for the 1991 NCDB versus 1987 to 1995 VMTR was 3-year 18% versus 38%, and 5-year 14% versus 35%. CONCLUSIONS: In comparison with the NCDB, VMTR may have fewer stage IV pancreatic cancers, but improvement is needed in decreasing the number of patients for whom the stage is unknown, as many of these likely represent late stage disease. We have a similar resection rate and a higher survival compared with the NCDB, but a mechanism is not in place to statistically compare our survival data with those of the NCDB. Even though all accredited hospitals are required to have a tumor registry, our data were difficult to compare with those of the NCDB because of coding and reporting deficiencies and inability to statistically compare survival data. Before our practice patterns and outcomes can be compared with national standards, both the VMTR and the NCDB must have standardized data collection and better access to the data.

Actuarial Analysis↗
PubMed2000

Monitoring, modelling and environmental exposure assessment of industrial chemicals in the aquatic environment.

Monitoring and laboratory data play integral roles alongside fate and exposure models in comprehensive risk assessments. The principle in the European Union Technical Guidance Documents for risk assessment is that measured data may take precedence over model results but only after they are judged to be of adequate reliability and to be representative of the particular environmental compartments to which they are applied. In practice, laboratory and field data are used to provide parameters for the models, while monitoring data are used to validate the models' predictions. Thus, comprehensive risk assessments require the integration of laboratory and monitoring data with the model predictions. However, this interplay is often overlooked. Discrepancies between the results of models and monitoring should be investigated in terms of the representativeness of both. Certainly, in the context of the EU risk assessment of existing chemicals, the specific requirements for monitoring data have not been adequately addressed. The resources required for environmental monitoring, both in terms of manpower and equipment, can be very significant. The design of monitoring programmes to optimise the use of resources and the use of models as a cost-effective alternative are increasing in importance. Generic considerations and criteria for the design of new monitoring programmes to generate representative quality data for the aquatic compartment are outlined and the criteria for the use of existing data are discussed. In particular, there is a need to improve the accessibility to data sets, to standardise the data sets, to promote communication and harmonisation of programmes and to incorporate the flexibility to change monitoring protocols to amend the chemicals under investigation in line with changing needs and priorities.

Environmental Exposure↗
PubMed1998

Three-dimensional ultrasound imaging.

The objective of this article is to provide scientists, engineers and clinicians with an up-to-date overview on the current state of development in the area of three-dimensional ultrasound (3-DUS) and to serve as a reference for individuals who wish to learn more about 3-DUS imaging. The sections will review the state of the art with respect to 3-DUS imaging, methods of data acquisition, analysis and display approaches. Clinical sections summarize patient research study results to date with discussion of applications by organ system. The basic algorithms and approaches to visualization of 3-D and 4-D ultrasound data are reviewed, including issues related to interactivity and user interfaces. The implications of recent developments for future ultrasound imaging/visualization systems are considered. Ultimately, an improved understanding of ultrasound data offered by 3-DUS may make it easier for primary care physicians to understand complex patient anatomy. Tertiary care physicians specializing in ultrasound can further enhance the quality of patient care by using high-speed networks to review volume ultrasound data at specialization centers. Access to volume data and expertise at specialization centers affords more sophisticated analysis and review, further augmenting patient diagnosis and treatment.

Algorithms↗
PubMed2003

DARTS 2000 online diabetes management system: formative evaluation in clinical practice.

RATIONALE, AIMS AND OBJECTIVES: Failure to engage in user-informed evaluation of emergent health informatics tools can have negative consequences for future implementation, related both to poor usability or clinical utility and to suboptimal stakeholder buy-in. This paper describes a formative evaluation in primary care of a multifaceted, web-based resource for diabetes management. The primary aims were to assess the usability and utility of the prototype in order to inform system refinements prior to implementation, and to investigate barriers and facilitators to system use so as to aid the development of a tailored implementation plan. METHODS: A mixed-method approach involving survey, remote observation, semi-structured interviews and electronic feedback. CONTEXT: One Scottish local health care cooperative comprising five general practice surgeries and their staff. RESULTS: A survey following temporary exposure to a dummy site revealed high levels of computer familiarity, welcoming attitudes and positive ratings of usability, format and utility. Comments mainly addressed content accuracy, feature suggestions and usability issues. Key barriers and facilitators to use included time and training. Remote observation following access to live clinical data enabled profiling of usage by individual and professional group. In the 3 month observation period administrators were the most frequent users, followed by GPs and nurses, with clinical and data entry screens accessed most often. Semi-structured interviews with key respondents sampled by professional group and usage frequency provided richer qualitative information on barriers and facilitators to use, patterns of system integration into work routines and system usability, content and utility. Content analysis of electronic feedback revealed mainly technical queries and general expressions of satisfaction. CONCLUSIONS: Evaluation informed a number of important and unforeseen improvements to the prototype and helped refine the implementation plan. Engagement in the process of evaluation has led to high levels of stakeholder ownership and widespread implementation.

Attitude to Computers↗
PubMed1987

[Obstetric-perinatologic data collection using a personal computer].

A concept covering the collecting and processing of obstetrical and perinatological data is described. Collecting of patient data is effected on the basis of a case history that has been drawn up in an EDP-adequate manner, which, however, can also be used in the conventional way. This procedure was chosen because for some time to come one cannot do without a document for handwritten notes to avoid duplication of work by "double tracking" and to eliminate transmission errors, and also to continue the present procedure of dealing with the patient. A commercial data base system was chosen for data collection and storage (dBase III by Ashton Tate). This relational data base has its own programming language with very powerful macro calls. Data input is effected by means of programme masks which the user can solicit via menu monitoring. The requisite hardware configuration consists of a computer with a main storage comprising 640 KB, system MS-DOS, and a hard disk of at least 20 MB. This data collection system operates in an obstetric hospital with annually more than 1,600 births and more than 1,200 entries during early pregnancy, to the satisfaction of the users. Besides compiling the usual statistical analyses and formulating research problems, the system automatically prepares the discharge reports. This rationalisation procedure compels the user to collect the data with care and also completely. On the whole, such a data collection system offers to hospitals of any size quick and easy access to data at any time, as well as optimised patient care, without additional effort and at a reasonable cost level.

Computers↗
PubMed2006

FlyBase: anatomical data, images and queries.

FlyBase (http://flybase.org/) is a database of genetic and genomic data on the model organism Drosophila melanogaster and the entire insect family Drosophilidae. The FlyBase Consortium curates, annotates, integrates and maintains a wide variety of data within this domain. Access to the data is provided through graphical and textual user interfaces tailored to particular types of data. FlyBase data types include maps at the cytological, genetic and sequence levels, genes and alleles including their products, functions, expression patterns, mutant phenotypes and genetic interactions as well as aberrant chromosomes, annotated genomes, genetic stock collections, transposons, transgene constructs and insertions, anatomy and images, bibliographic data, and community contact information.

Animals↗