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PubMed2003

Strengthening the United States' database protection laws: balancing public access and private control.

This paper develops three arguments for increasing the strength of database protection under U.S. law. First, stronger protections would encourage private investment in database development, and private databases have many potential benefits for science and industry. Second, stronger protections would discourage extensive use of private licenses to protect databases and would allow for greater public control over database laws and policies. Third, stronger database protections in the U.S. would harmonize U.S. and E.U. laws and would thus enhance international trade, commerce, and research. The U.S. should therefore follow the European example and develop two tiers of protection for databases: 1) protection for creative databases under copyright law; 2) protection for non-creative databases through a special type of sui generis protection. In order to balance private control of data and public access to data, sui generis protections should define a "fair use" exemption that permits some unauthorized extraction of data for private, educational, and research purposes, provided that such extraction does not adversely impact the economic value of the database.

Access to Information↗
PubMed2005

MRS: a fast and compact retrieval system for biological data.

The biological data explosion of the 'omics' era requires fast access to many data types in rapidly growing data banks. The MRS server allows for very rapid queries in a large number of flat-file data banks, such as EMBL, UniProt, OMIM, dbEST, PDB, KEGG, etc. This server combines a fast and reliable backend with a very user-friendly implementation of all the commonly used information retrieval facilities. The MRS server is freely accessible at http://mrs.cmbi.ru.nl/. Moreover, the MRS software is freely available at http://mrs.cmbi.ru.nl/download/ for those interested in making their own data banks available via a web-based server.

Databases, Genetic↗
PubMed1996

Clinical experience with a second-generation hospital-integrated picture archiving and communication system.

In a previous report we described a second-generation hospital-integrated picture archiving and communication system (HI-PACS) developed in-house. This HI-PACS had four unique features not found in other PAC systems. In this report, we will share some of our clinical experiences pertaining to these features during the past 12 months. We first describe the usage characteristics of two 2,000-line workstations (WSs), one in the in-patient and the second in the out-patient neuroradiology reading area. These two WSs can access neuro-images from 10 computed tomographic and magnetic resonance scanners located two medical centers through an asynchronous transfer mode network connection. The second unique feature of the system is an intensive care unit (ICU) server, which supports three WSs in the pediatric, medical surgery, and cardiac ICUs. The users' experiences and requests for refinement of the WSs are given. Another feature is physician desk-top access of PACS data. The HI-PACS provides a server connected to more than 100 Macintosh users for direct access of PACS data from their offices. The server's performance and user critiques are described. The last feature is a digital imaging and communication in medicine (DICOM) connection of the HI-PACS to a manufacturer's ultrasound PACS module. The authors then outline the interfacing process and summarize some of the difficulties encountered. Developing an in-house PACS has many advantages but also some drawbacks. Based on experience, the authors have formulated three axioms as a guide for in-house PACS development.

Computer Communication Networks↗
PubMed2005

The Yeast Resource Center Public Data Repository.

The Yeast Resource Center Public Data Repository (YRC PDR) serves as a single point of access for the experimental data produced from many collaborations typically studying Saccharomyces cerevisiae (baker's yeast). The experimental data include large amounts of mass spectrometry results from protein co-purification experiments, yeast two-hybrid interaction experiments, fluorescence microscopy images and protein structure predictions. All of the data are accessible via searching by gene or protein name, and are available on the Web at http://www.yeastrc.org/pdr/.

Databases, Protein↗
PubMed2002

Research use of linked health data--a best practice protocol.

OBJECTIVE: This article outlines a protocol for facilitating access to administrative data for the purpose of health services research, when these data are sourced from multiple organisations. This approach is designed to promote confidence in the community and among data custodians that there are benefits of linked health information being used and that individual privacy is being rigorously protected. BACKGROUND: Linked health administration data can provide an unparalleled resource for the monitoring and evaluation of health care services. However, for a number of reasons, these data have not been readily available to researchers. In Australia, an additional barrier to research is the result of health data sets being collected by different levels of government - thus all are not available to any one authority. To improve this situation, a practical blue-print for the conduct of data linkage is proposed. This should provide an approach suitable for most projects that draw large volumes of information from multiple sources, especially when this includes organisations in different jurisdictions. CONCLUSIONS AND IMPLICATIONS: Health data, although widely and diligently collected, continue to be under-utilised for research and evaluation in most countries. This protocol aims to make these data more easily available to researchers by providing a controlled and secure mechanism that guarantees privacy protection.

Access to Information↗
PubMed2002

A network system of medical and welfare information service for the patients, their families, hospitals, local governments, and commercial companies in a medical service area.

A service information system using the Internet, which connected the various people who are related to medical treatment and nursing welfare, was constructed. An intractable neurological disease patient who lives in the Onga district, Fukuoka, Japan, and the people who are related to the service were chosen as test users in an experimental model. The communicated service information was divided into open-use data (electronic bulletin board, welfare service, medical care service, and link to private company service home page) and closed-use data (the individual patient's hysterics). The open data server was installed in an Internet service provider The open data could be accessed not only by the patient, but also by the family, information center, companies, hospitals, and nursing commodity store related to patient's nursing and medical treatment. Closed data server was installed in an information center (public health center). Only patient and information center staff can access the closed data. Patients should search and collect the service information of various medical and welfare services by themselves. Therefore, services prepared for the patient are difficult to know, and they cannot be sufficiently utilized. With the use of this information system, all usable service information became accessible, and patients could easily use it. The electronic bulletin board system (BBS) was used by patients for knowing each other or each others' family, and was used as a device for exchange of wisdom. Also, the questions for the specialist, such as doctor, dentist, teacher, physical therapist, care manager, welfare office staff member, and public health nurse, and the answers were shown on the BBS. By arranging data file, a reference of various patients in question and answer, which appeared in this BBS, was made as "advisory hints" and was added to the open data. The advisory hints became the new service information for the patients and their family. This BBS discovered the possibility of becoming an important information source for companies, hospital and, administration to know the requirements of patients and their families and the kind of services to be served. Although suppliers provide medical and welfare services for the patient, there is a tendency that the service information is sent by the suppliers at their own convenience. The information system in which various people participated was constructed in order to collect information for the patient, taking a patient-oriented approach. The result of the model test showed that this information system using Internet technology is a good system for both the service supplier and its receiver.

Access to Information↗
PubMed1995

Design and feasibility of a national Medicaid Access Survey with state-specific estimates.

This article presents the results of a study to design and assess the feasibility of conducting a national Medicaid Access Survey to generate timely, state-specific estimates of access to care for Medicaid enrollees. State-specific data on Medicaid access is especially relevant because state programs and environments vary considerably and are changing rapidly in ways that could influence access. We analyze (1) basic survey design parameters and instrument content, (2) alternative sampling approaches and their feasibility, (3) pilot test results, (4) the feasibility of using existing national surveys to generate comparison estimates for state-based surveys, and (5) estimates of the required sample size and costs for such a national Medicaid Access Survey. We conclude that a survey generating timely, state-specific estimates of Medicaid access is both feasible and affordable if attention is paid to key design challenges while keeping objectives and design simple.

Budgets↗
PubMedDate not supplied

[Correlation between survival time and severity of injuries in fatal injuries in traffic accidents].

INTRODUCTION: In forensic pathology, only trauma systems based on disintegration of anatomic structure of organs and tissues, could be used for objectivization, comparison and establishing of severity of injuries. Trauma systems based on pathophysiological values are useless. The Abbreviated Injury Scale (AIS) and its derivate Injury Severity Score (ISS) are the most common. AIS coded injuries are divided into six body regions and injuries are assigned a six-digit score in relation to their severity. ISS results the sum of the squares of the highest AIS values from the three most severely injured body regions. In this way, the ISS values are discontinued and vary from 0 (absence of injuries) to 75 (incompatible-with-life injury). PURPOSE: The purpose of this paper is to establish the correlation degree between outliving period and trauma severity in persons fatally injured in traffic accidents, and according to this finding to point out the ISS value of critical injury. MATERIAL AND METHOD: A retrospective autopsy study was performed; it included the material of the Institute of Forensic Medicine in Belgrade of 1998. The autopsy reports and accessible clinical medical data were analyzed for persons over the age of 18, fatally injured in traffic accidents who survived trauma less than 15 days. The sample was statistically prepared (chi 2-test, t-test, correlation coefficient, regression line). RESULTS AND DISCUSSION: The sample included 272 persons: 193 males and 79 females. The proportion of men was more significant (chi 2 = 4.76; 0.01 < p < 0.05). Average age was 51.08 years (SD = 18.08): males 49.84 +/- 17.41 and females 54.09 +/- 19.38. The most frequently injured persons in our sample were pedestrians (134). The authors combined the autopsy and accessible clinical data in order to obtain the ISS value for each case. They considered that all persons found dead on the spot or died ante portam did not outlive trauma. The sample distribution by ISS values showed three peaks: for ISS--75, 41-50 and 26-35. Peaks indicated the number of the injured body regions and trauma severity in these persons. In 87 persons who did not survive, the ISS value was 75. There were 73 persons without outliving period with ISS values less than 75: their mean ISS value was 31.87 (SD = 11.30). In 112 cases the mean outliving period was 4.79 days (SD = 3.77) and their mean ISS value was 18.05 (SD = 15.33), which was a statistically significant lower ISS value than in previous group (t = 7.015; p < 0.001). A weak negative correlation between outliving period and ISS values in our sample was noted (coefficient of linear correlation r = -0.452). Our sample is representative (t = 8.37). Coefficient of a determination (r2 = 0.20), pointed to the fact that direct correlation outliving period-trauma severity was only about 20% and the rest of correlation i.e. 80% depended on other factors (e.g. effective emergency medical system and triage, prompt and correct diagnosis, adequate medical treatment and care, etc.). The calculated linear regression was as follows: outliving period approximately 52-3 ISS. This regression pointed out that critical and potentially fatal injury, in our sample, was injury with ISS of 17. There were 22 persons with ISS < or = 7. Six of them died on the spot as car passengers; they died due to mechanical asphyxia (thoracoabdominal pressure) or respiratory and/or circulation failure due to critical chest injury (flail chest, contusions and rupture of the lungs with consequent haemopneumothorax). The rest of 16 persons survived trauma in an average of 8.56 days (SD = 3.88), and the causes of death were pneumonia, thrombus and fat embolism, sepsis, etc. CONCLUSION: By anaylzing our sample of fatally injured persons in traffic accidents (unpenetrated blunt trauma), there was a negative weak correlation between the outliving period and severity of injury based on ISS. This correlation was partly direct but mostly depended on other factors (e.g. effective emergency medical system and triage, prompt and correct diagnosis, adequate medical treatment and care, etc.). Establishment of these factors could be possible through state medical projects in big medical trauma centres. Prospect registration, evaluation and scoring of all injuries in hospitals and dissecting rooms, and comparison of the obtained results, can give valid data on mortality of injured people, bad diagnosis, and appropriate medical treatment. The autopsy of injured persons dead on the spot can point out what kind of injuries are incompatible with life, as well as with their severity. The autopsy of injured persons who survived trauma can point to the most frequent injury complications, clinical diagnosis and preventable deaths. According to this paper, the critical injury by ISS is 17. In such cases, the forensic pathologist must answer the following questions: whether the death was due to trauma; whether the precipitated cause of death was the consequence or complication of injury; what were the mechanism and mode of dying; whether the death was preventable; if there were possible malpractice and negligence, etc.

Accidents, Traffic↗
PubMedDate not supplied

The BioImage Database Project: organizing multidimensional biological images in an object-relational database.

The BioImage Database Project collects and structures multidimensional data sets recorded by various microscopic techniques relevant to modern life sciences. It provides, as precisely as possible, the circumstances in which the sample was prepared and the data were recorded. It grants access to the actual data and maintains links between related data sets. In order to promote the interdisciplinary approach of modern science, it offers a large set of key words, which covers essentially all aspects of microscopy. Nonspecialists can, therefore, access and retrieve significant information recorded and submitted by specialists in other areas. A key issue of the undertaking is to exploit the available technology and to provide a well-defined yet flexible structure for dealing with data. Its pivotal element is, therefore, a modern object relational database that structures the metadata and ameliorates the provision of a complete service. The BioImage database can be accessed through the Internet.

Copyright↗
PubMed2007

Automated mass correction and data interpretation for protein open-access liquid chromatography-mass spectrometry.

Characterization of recombinant protein purification fractions and final products by liquid chromatography-mass spectrometry (LC/MS) are requested more frequently each year. A protein open-access (OA) LC/MS system was developed in our laboratory to meet this demand. This paper compares the system that we originally implemented in our facilities in 2003 to the one now in use, and discusses, in more detail, recent enhancements that have improved its robustness, reliability, and data reporting capabilities. The system utilizes instruments equipped with reversed-phase chromatography and an orthogonal accelerated time-of-flight mass spectrometer fitted with an electrospray source. Sample analysis requests are accomplished using a simple form on a web-enabled laboratory information management system (LIMS). This distributed form is accessible from any intranet-connected company desktop computer. Automated data acquisition and processing are performed using a combination of in-house (OA-Self Service, OA-Monitor, and OA-Analysis Engine) and vendor-supplied programs (AutoLynx, and OpenLynx) located on acquisition computers and off-line processing workstations. Analysis results are then reported via the same web-based LIMS. Also presented are solutions to problems not addressed on commercially available, small-molecule OA-LC/MS systems. These include automated transforming of mass-to-charge (m/z) spectra to mass spectra and automated data interpretation that considers minor variants to the protein sequence-such as common post-translational modifications (PTMs). Currently, our protein OA-LC/MS platform runs on five LC/MS instruments located in three separate GlaxoSmithKline R&D sites in the US and UK. To date, more than 8000 protein OA-LC/MS samples have been analyzed. With these user friendly and highly automated OA systems in place, mass spectrometry plays a key role in assessing the quality of recombinant proteins, either produced at our facilities or bought from external sources, without dedicating extensive amounts of analyst resource.

Animals↗
PubMed1998

Research implications of improvements in access to the ONS Longitudinal Study.

In this article we outline significant changes in the way the ONS Longitudinal Study data are stored, accessed and analysed. The data were held previously on mainframe computers. Recent technological changes have made it possible to introduce PC-based systems without compromising confidentiality. The advantages of this new computing environment are illustrated with recent findings on geographic inequalities in health.

Adolescent↗
PubMedDate not supplied

[Perception of the impact of Bipolar Disorder and its diagnosis in health centers in Argentine and Chile].

OBJECTIVE: Early detection and treatment of Bipolar Disorder (BD) determine a significant relief in the considerable burden this disease implies. In order to adequately plan the strategies to guarantee access to treatment, it is useful to consider data which reflect the everyday vicissitudes the people affected by this pathology have to deal with. People on treatment for BD in centres in Argentina and Chile were surveyed, collecting data on their access to diagnosis and treatment. The centre surveyed in Chile, unlike those in Argentina, operates as a specialized unit. METHODOLOGY: An anonymous assisted survey was carried out; a random sample of people assisted in the participating centres with a diagnosis of BD type I or II, and stabilized for a period no shorter than 12 months, was assessed. RESULTS: 100 people were surveyed in Argentina and 69 in Chile (70% women, age 45.2 +/- 14.7, average schooling 12 years). Seventy one percent began symptoms at adult age (28,43 +/- 13 years), 14% during childhood. Age at first consultation was: 30 +/- 12.5; 85% reported having suffered psychotic symptoms, 46.4% suicide attempts, 71% hospitalisations for BD. Sixty-nine percent reported diagnostic delays longer than a year (median 8 years), 75% reported having received other diagnosis prior to their BD diagnosis (62% unipolar depression, 41% schizophrenia). Forty-one percent reported being unemployed. Delays and diagnostic errors were associated to a significant increase in the functional impact reported. CONCLUSION: Approximately 7 out of 10 people report difficulties in the access to a BD diagnosis. These difficulties magnify the already important impact of the disease.

Argentina↗
PubMed2005

Design of a Multi Dimensional Database for the Archimed DataWarehouse.

The Archimed data warehouse project started in 1993 at the Geneva University Hospital. It has progressively integrated seven data marts (or domains of activity) archiving medical data such as Admission/Discharge/Transfer (ADT) data, laboratory results, radiology exams, diagnoses, and procedure codes. The objective of the Archimed data warehouse is to facilitate the access to an integrated and coherent view of patient medical in order to support analytical activities such as medical statistics, clinical studies, retrieval of similar cases and data mining processes. This paper discusses three principal design aspects relative to the conception of the database of the data warehouse: 1) the granularity of the database, which refers to the level of detail or summarization of data, 2) the database model and architecture, describing how data will be presented to end users and how new data is integrated, 3) the life cycle of the database, in order to ensure long term scalability of the environment. Both, the organization of patient medical data using a standardized elementary fact representation and the use of the multi dimensional model have proved to be powerful design tools to integrate data coming from the multiple heterogeneous database systems part of the transactional Hospital Information System (HIS). Concurrently, the building of the data warehouse in an incremental way has helped to control the evolution of the data content. These three design aspects bring clarity and performance regarding data access. They also provide long term scalability to the system and resilience to further changes that may occur in source systems feeding the data warehouse.

Databases, Factual↗
PubMed2006

Opinion of patients on accessibility of primary health care centers in Siauliai region.

This article presents the data about the accessibility of primary health care in Siauliai region and about factors related to the patients' perceived access to primary care. The survey was carried out in June 2004, in the context of a joint project of Kaunas University of Medicine and NIVEL, the Netherlands Institute of Health services research. Patients, treated in private and public health care centers in Siauliai region, took part in this survey. The majority of patients are positive about territorial accessibility of primary health care, indicating that it is easy to get to primary health care centers. Patients expressed a high level of satisfaction with the behavior of reception desk personnel. However, they are more critical about waiting time for the general practitioner's consultation: every third noted that they had to wait for far too long. The majority of respondents pointed out that general practitioners rooms and waiting corridors are convenient and comfortable, and that general practitioners have sufficient medical equipment. Most of the patients are very well informed and satisfied with the opening hours of primary health care centers. The main factors related to the patients' evaluations of primary health care accessibility were living place of patients and type of ownership of health care center. Patients living in the towns were less likely to evaluate the accessibility of primary health care centers positively, compared to those living in the city of Siauliai. Patients receiving health care services in private centers were much more positive about access to services than those receiving services in public centers.

Adult↗
PubMedDate not supplied

Tools for community-oriented primary care: a process for linking practice and community data.

BACKGROUND: Community-oriented primary care (COPC) is an increasingly attractive paradigm for primary care delivery. Further work is needed, however, to implement COPC in busy practice settings. This study reports a feasible method for linking practice and community health data for use in COPC. METHODS: Using one practice and its community as an example of the process, we sought data related to five common cancers. Data from readily accessible community sources were combined with practice morbidity data using commonly available computer hardware and software. RESULTS: We developed a user-friendly database and maps showing rates and distribution of the example diseases. We also developed strategies to obtain complete case identification and to address confidentiality and proprietary concerns. CONCLUSIONS: Understanding patterns of disease expression in the practice and the community is critical to the COPC process. Rapid, inexpensive methods for displaying these patterns, such as the database and maps described, must be accessible to clinicians if COPC is to move from theory into practice. Partnerships between health care providers and institutions can also help get this capability into the hands of clinicians.

Community Health Services↗
PubMed1999

Data needs in studies on equity in health and access to care--ethical considerations.

In order to study equity in health and access to care in an appropriate way, data are needed on an individual level and must include information about health, mortality, morbidity, utilization of care, age, sex, residential area, family situation and the social and economic circumstances of each individual. These data must be collected at several points of time during a life cycle. This is a demanding task requiring many resources and methodological and ethical considerations. The ethical and political trade-off is between our demand for knowledge and a fair distribution of resources in order to achieve equity in health and access to care and the need to administrate sensitive data without threatening personal integrity. In presenting results from Swedish studies, it is argued that the benefits of using registers for this kind of epidemiological research by far outweigh the risk of using registers.

Data Interpretation, Statistical↗
PubMed2007

BRENDA, AMENDA and FRENDA: the enzyme information system in 2007.

The BRENDA (BRaunschweig ENzyme DAtabase) enzyme information system (http://www.brenda.uni-koeln.de) is the largest publicly available enzyme information system worldwide. The major parts of its contents are manually extracted from primary literature. It is not restricted to specific groups of enzymes, but includes information on all identified enzymes irrespective of the enzyme's source. The range of data encompasses functional, structural, sequence, localisation, disease-related, isolation, stability information on enzyme and ligand-related data. Each single entry is linked to the enzyme source and to a literature reference. Recently the data repository was complemented by text-mining data in AMENDA (Automatic Mining of ENzyme DAta) and FRENDA (Full Reference ENzyme DAta). A genome browser, membrane protein prediction and full-text search capacities were added. The newly implemented web service provides instant access to the data for programmers via a SOAP (Simple Object Access Protocol) interface. The BRENDA data can be downloaded in the form of a text file from the beginning of 2007.

Animals↗