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GENFILES: a computerized medical genetics information network. I. An overview.

GENFILES is a comprehensive computer information network to serve research, service, and administrative needs in medical genetics. Four major databases contain detailed information generated by the cytogenetics laboratory, the prenatal diagnosis program, the diagnostic and genetic counseling clinics, and the human cell culture facility. Unique aspects are the use of RAMIS, a commercial database management system, and of microprocessor computers as "intelligent" terminals with significant data-handling capabilities. All databases are no-line in a directly accessed large timesharing computer. The system, which has been designed, controlled and maintained by regular genetics staff, is an easy to use, moderate-cost tool well suited for use as a regional clinical genetics information system.

Computers

VIDEOFAR: an epidemiologic tool for drug utilization studies.

VIDEOFAR is a computerized drug prescription monitoring system oriented to gain an epidemiological insight into the phenomenon of "drug prescription". The set of activities carried out within the VIDEOFAR project were focused to: define methods of analysis of prescription data, which could be transferred to the peripherical operating settings of the National Health Service (Local Health Units, Epidemiologic Observatories, Regional Pharmaceutical Services, etc.); implement a Drug Data Base to allow a flexible utilization of information; implement software systems in different computer environments.

Data Collection

Microcomputer use in an oral biopsy service.

The need for rapid and accurate retrieval of the data generated by an oral biopsy service and the adjacent medical center was met with the purchase and programming of a microcomputer and hard disk drive. The planning phase involved an assessment of the needs of the department, creation of an ideal form to be displayed on the video screen that can be easily used to enter the information, selection of coding systems, and selection of compatible hardware and software. Customized in-house programming using a commercially available database management system has created an entry form and menu-driven information retrieval system tailored to the needs of the department.

Biopsy

Adoption of security and confidentiality features in an operational community health information network: the Comox Valley experience--case example.

Since 1993, a budding community health information network (CHIN) has been in operation in the Comox Valley in Canada. A general hospital and three multi-doctor clinics are linked electronically. The clinics operate without paper charts using a comprehensive clinic information system. The link is provided by RSALink, a commercial message exchange service, based on Health Link, a system developed at the University of Victoria (McDaniel et al., Can. Med. Inform. 1 (1994) 40-41; McDaniel, Dissertation, University of Victoria, Canada, 1994). Health Link is a highly adaptable message exchange service with rich functionality. Despite this, the system is used exclusively to receive laboratory results transmitted by the hospital's laboratory system (RSAStat). The results are deposited in the patient data base of a commercial clinic information system (CliniCare). This case is instructive because the users' selection of services available through Health Link allows us to observe the preferences in this informational sophisticated environment. Laboratory data transmission is appreciated as highly beneficial. The reliability, security and ample privacy protection and authentication features of Health Link, in contrast, are used in a black box mode and are not consciously exploited. This is consistent with our experience of the use of other systems which have operated for a substantial time, essentially without serious protection features. Our experience suggests that security and confidentiality features are exploited only to the extent that they do not require additional effort or conscientious intervention. This puts the system provider in the difficult position of either offering interactive systems that nobody will use, or providing automated features that nobody is aware of and that are therefore not used to full advantage--if at all.

British Columbia

HELP the next generation: a new client-server architecture.

A new client-server based system which is centered around a lifetime data repository (LDR) is under construction. The goal of the new system is to maintain the patient centered decision support aspects of the existing HELP* system while providing an open architecture that supports faster application development and allows execution of applications to be distributed across many computers. These goals are achieved by implementing the system with software components that are commercially available or by adhering to national and international standards for software integration. Keys to successful integration include the use of MS-DOS @, OS/2#, and UNIX Section as operating systems, Microsoft OLE 2.0 as a standard interface to the clinical database, the use of TUXEDO as a transaction/communication manager, and the use of ORACLE [symbol: see text] RDBMS as the underlying database management system.

Computer Communication Networks

Integrating clinical and laboratory data in genetic studies of complex phenotypes: a network-based data management system.

The identification of genes underlying a complex phenotype can be a massive undertaking, and may require a much larger sample size than thought previously. The integration of such large volumes of clinical and laboratory data has become a major challenge. In this paper we describe a network-based data management system designed to address this challenge. Our system offers several advantages. Since the system uses commercial software, it obviates the acquisition, installation, and debugging of privately-available software, and is fully compatible with Windows and other commercial software. The system uses relational database architecture, which offers exceptional flexibility, facilitates complex data queries, and expedites extensive data quality control. The system is particularly designed to integrate clinical and laboratory data efficiently, producing summary reports, pedigrees, and exported files containing both phenotype and genotype data in a virtually unlimited range of formats. We describe a comprehensive system that manages clinical, DNA, cell line, and genotype data, but since the system is modular, researchers can set up only those elements which they need immediately, expanding later as needed.

Clinical Laboratory Information Systems

A model for the assessment of medical workstations for health care support.

The development of medical workstations for the support of patient care, the assessment of care, management support, and education is just at its beginning. During the Working Conference on the Health care Professional Workstation held in Washington DC, June 1993, several aspects of such workstations were discussed, but it was also recognized that prototyping or learning by experience could be a rich source to further promote the progress in this field. Eight such prototypes or already operational medical workstations were demonstrated and a preliminary user assessment was done to obtain a first insight in the advantages and the type of criteria of such evaluations. It was concluded that such assessments were of great value to (i) give feedback to the designers of medical workstations, (ii) indicate areas of strength and for further research, and (iii) to offer criteria to potential users of such workstations for making decisions on using such systems. The assessment criteria deal with functionality, architecture, user interfaces, communications and integration, and data and knowledge management.

Artificial Intelligence

Large database management in clinical dental research.

Previously the management and analysis of large databases for longitudinal clinical dental research has been severely restricted by the costs of custom-made software and access to suitable computing equipment. However, the recent availability of powerful personal computers and the use of the Scientific Information Retrieval Database Management System (SIR/DBMS) in association with BMDP Statistical Software has now created an enormously powerful tool for extensive and fast data manipulation requiring relatively few commands and the capability to easily perform detailed statistical analyses.

Computer Graphics

[A query system for the "SINTESI" database in scientific research and medical practice].

"SINTESI release 1.0" is an application for Windows that was designed to enable a practical approach to day-hospital evaluation and management of several metabolic and instrumental parameters. "SINTESI" provides electronic archives such as demographics, history, follow-up, laboratory, electrocardiogram, Doppler echocardiography, vascular echo-Doppler, Holter ECG, nuclear imaging, radiology, ergometric testing, ambulatory blood pressure monitoring, hemodynamics. We have improved the first release (1.0) with a new application that queries the database ("SINTESI release 2.0"). The new query application, developed in collaboration with experts of the Italian Group for the Study of Atherosclerosis and Metabolic Diseases, was designed with the central file displaying buttons that recall electronic archives, allowing to select the variables for the query. At the end of each operation, the user always returns to the central file, where it builds the query formula by "AND/OR" logic operators. Query formula and results can be recorded to be used whenever needed. The results of the query can be exported as DBF or ASCII files for analysis with statistical packages. This feature allows the use of the data bank for medical research.

Cardiovascular Diseases

aCHEdb: the database system for ESTHER, the alpha/beta fold family of proteins and the Cholinesterase gene server.

Acetylcholinesterase belongs to a family of proteins, the alpha/beta hydrolase fold family, whose constituents evolutionarily diverged from a common ancestor and share a similar structure of a central beta sheet surrounded by alpha helices. These proteins fulfil a wide range of physiological functions (hydrolases, adhesion molecules, hormone precursors) [Krejci,E., Duval,N., Chatonnet,A., Vincens,P. and Massoulié,J. (1991) Proc. Natl. Acad. Sci. USA , 88, 6647-6651]. ESTHER (for esterases, alpha/beta hydrolase enzymes and relatives) is a database aimed at collecting in one information system, sequence data together with biological annotations and experimental biochemical results related to the structure-function analysis of the enzymes of the family. The major upgrade of the database comes from the use of a new database management system: aCHEdb which uses the ACeDB program designed by Richard Durbin and Jean Thierry-Mieg. It can be found at http://www.ensam.inra.fr/cholinesterase

Animals

CQL: a database in smart card for health care applications.

The CQL-Card is the first smart card in the world to use Database Management Systems (DBMS) concepts. The CQL-Card is particularly suited to a portable file in health applications where the information is required by many different partners, such as health insurance organizations, emergency services, and General Practitioners. All the information required by these different partners can be shared with independent security mechanisms. Database engine functions are carried out by the card, which manages tables, views, and dictionaries. Medical Information is stored in tables and views are logical and dynamic subsets of tables. For owner-partners like MIS (Medical Information System), it is possible to grant privileges (select, insert, update, and delete on table or view) to other partners. Furthermore, dictionaries are structures that contain requested descriptions and which allow adaptation to computer environments. Health information held in the CQL-Card is accessed using CQL (Card Query Language), a high level database query language which is a subset of the standard SQL (Structured Query Language). With this language, CQL-Card can be easily integrated into Medical Information Systems.

France

[Criteria of good manufacturing practice conforming electronic data processing].

Good manufacturing practices (GMP) are not only supported by data management systems but also implicate that they must meet the supplier qualification criteria in terms of GMP. Elements which technically support a GMP-conformity are multiuser-operating systems, relational data bases, object-oriented languages and data parameters. The most important part is covered by human resources of a bloodbank, which starts with the definition and ends with validation tests. Only the required profile of the end-user makes the GMP-conformity of a data management system constructable and realizable. Competence in project-management and clearly structured projects let such systems perform as planned.

Blood Banks

Data management in multi-center clinical trials and the role of a nation-wide computer network. A 5 year evaluation.

Multidisciplinary collaboration in multi-center trials needs a formalized data management structure to ensure true progress monitoring and high quality research data. Cadans, a customized facility for data management, related to the Interuniversity Cardiology Institute of the Netherlands, designed a computer-based data management system for multidisciplinary multi-center collaborative research projects. In this paper we describe the system and the role of integrated access to research databases on a data network. Areas of concern are also discussed.

Cardiology

An intranet database for pacemaker patients.

A database system, incorporating smartcard technologies, was designed to hold the personal and pacing details of pacemaker patients, who attended a clinic at the Royal Sussex County Hospital (RSCH), Brighton, UK. Following an initial period of a 12 month clinical trial, with the database running on a standalone personal computer, the Pacemaker Patient Database has been redesigned and implemented as an intranet-based system. This paper describes the issues relating to the development of the new prototype system and identifies the design principles for intranet-based electronic health care (EHCR) record database systems.

Computer Communication Networks

ADAMS: Aggregate Data Management System for epidemiologists and health-care managers.

An effective health-care policy is supported by the availability of data in the form of statistical tables for epidemiologists and health-care managers. Creation, analysis and exploitation of these data strongly support the monitoring of trends in mortality and morbidity phenomena and the evaluation of offered health services. This might imply the transformation of statistical tables to more suitable formats. A successful management, manipulation and querying of a statistical table is a complex activity requiring a considerable knowledge of statistical problems. Computerised support can be precious in this task and this led to the development of several data management systems. In this paper we sketch out the features of ADAMS (Aggregate Data Management System), a system conceived to allow an easy interaction with statistical tables, reshaping and browsing of their descriptive part. ADAMS aims at simplifying the problem of extracting information from a statistical database and performing statistical table manipulation. The following functionalities are provided: definition of a statistical database at descriptive level; storage of data in the database; manipulation of data according to the summarisation and reclassification operators; browsing between data and their descriptive part. It also supports different manipulation styles according to different user profiles.

Data Interpretation, Statistical

Reference master: a microcomputer-based storage and retrieval system for bibliographic references.

A complete system for housekeeping and retrieval of bibliographic references managing individual reprint collections is described. By the use of special hardware and individual data base software even large reprint collections in the range up to 65,000 papers are handled economically. A fast 8-bit microprocessor (HD 64180) in combination with a Winchester hard disk drive serves as the basis for rapid access to the desired information. An efficient string search algorithm written in assembly language guarantees a fast operation with a search speed of more than 6,000 entries/minute. The system cannot only prepare reference lists and reference files, but also incorporates an editor and maintains the control whether reprints are already on file or requested. The implementation of back-up schemes assure against data losses. Using a state of the art design single board computer and the most recent mass storage device technology, the system is as well small and cost effective, and thus suitable for personal use. In addition, some general questions and pitfalls concerning the management of scientific literature collections are touched upon.

Bibliographies as Topic