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The personal internetworked notary and guardian.

In this paper, we propose a secure, distributed and scaleable infrastructure for a lifelong personal medical record system. We leverage on existing and widely available technologies, like the Web and public-key cryptography, to define an architecture that allows patients to exercise full control over their medical data. This is done without compromising patients' privacy and the ability of other interested parties (e.g. physicians, health-care institutions, public-health researchers) to access the data when appropriately authorized. The system organizes the information as a tree of encrypted plain-text XML files, in order to ensure platform independence and durability, and uses a role-based authorization scheme to assign access privileges. In addition to the basic architecture, we describe tools to populate the patient's record with data from hospital databases and the first testbed applications we are deploying.

Computer Security↗

VIPERdb: a relational database for structural virology.

VIPERdb (http://viperdb.scripps.edu) is a database for icosahedral virus capsid structures. Our aim is to provide a comprehensive resource specific to the needs of the structural virology community, with an emphasis on the description and comparison of derived data from structural and energetic analyses of capsids. A relational database implementation based on a schema for macromolecular structure makes the data highly accessible to the user, allowing detailed queries at the atomic level. Together with curation practices that maintain data uniformity, this will facilitate structural bioinformatics studies of virus capsids. User friendly search, visualization and educational tools on the website allow both structural and derived data to be examined easily and extensively. Links to relevant literature, sequence and taxonomy databases are provided for each entry.

Capsid↗

Collaborative Approaches to e-Health: Valuable for Users and Non-users.

OBJECTIVE: To describe parental use of an Internet-based educational and emotional support system, in a regional NICU program. METHODS: Baby CareLink was installed in NICUs in 4 Denver area hospitals in 2003. Parents were offered access from hospital terminals and from any other Internet access point. Data on use of the program was collected by the computer system. Discharge status was verified by Colorado's Department of Public Assistance. RESULTS: Of the 388 families admitted to Denver area NICUs with Baby CareLink during the study period, 135 (34.8%) were identified as Medicaid families (needing public assistance). After exclusions, data for 81 Medicaid and 154 non-Medicaid families were available for analysis. Medicaid families who accessed 3 or more Baby CareLink web pages per day took their infants home 17.5 days sooner than families who used Baby CareLink less often (p=0.03). Among the non-Medicaid families, more frequent users of Baby CareLink took their infants home 14.3 days sooner (p=0.04). CONCLUSIONS: Internet portals will be used by both Medicaid and non-Medicaid parents with children in NICUs to meet educational needs. More frequent use of Baby CareLink was associated with significantly shorter length of stay. Self-help tools for parents may free nursing resource for families with greater needs.

Colorado↗

A Medicaid eHealth program: an analysis of benefits to users and nonusers.

OBJECTIVE: To describe parental use of an Internet-based educational and emotional support system, in a regional NICU program. METHODS: Baby CareLink was installed in NICUs in 4 Denver area hospitals in 2003. Parents were offered access from hospital terminals and from any other Internet access point. Data on use of the program was collected by the computer system. Discharge status was verified by Colorado's Department of Public Assistance. RESULTS: Of the 388 families admitted to Denver area NICUs with Baby CareLink during the study period, 135 (34.8%) were identified as Medicaid families (needing public assistance). After exclusions, data for 81 Medicaid and 154 non-Medicaid families were available for analysis. Medicaid families who accessed 3 or more Baby CareLink web pages per day took their infants home 17.5 days sooner than families who used Baby CareLink less often (p=0.03). Among the non-Medicaid families, more frequent users of Baby CareLink took their infants home 14.3 days sooner (p=0.04). CONCLUSIONS: Internet portals will be used by both Medicaid and non-Medicaid parents with children in NICUs to meet educational needs. More frequent use of Baby CareLink was associated with significantly shorter length of stay. Self-help tools for parents may free nursing resource for families with greater needs.

Health Care Costs↗

Data warehousing as a healthcare business solution.

Because of the trend toward consolidation in the healthcare field, many organizations have massive amounts of data stored in various information systems organizationwide, but access to the data by end users may be difficult. Healthcare organizations are being pressured to provide managers easy access to the data needed for critical decision making. One solution many organizations are turning to is implementing decision-support data warehouses. A data warehouse instantly delivers information directly to end users, freeing healthcare information systems staff for strategic operations. If designed appropriately, data warehouses can be a cost-effective tool for business analysis and decision support.

Cost-Benefit Analysis↗

Creating the gene ontology resource: design and implementation.

The exponential growth in the volume of accessible biological information has generated a confusion of voices surrounding the annotation of molecular information about genes and their products. The Gene Ontology (GO) project seeks to provide a set of structured vocabularies for specific biological domains that can be used to describe gene products in any organism. This work includes building three extensive ontologies to describe molecular function, biological process, and cellular component, and providing a community database resource that supports the use of these ontologies. The GO Consortium was initiated by scientists associated with three model organism databases: SGD, the Saccharomyces Genome database; FlyBase, the Drosophila genome database; and MGD/GXD, the Mouse Genome Informatics databases. Additional model organism database groups are joining the project. Each of these model organism information systems is annotating genes and gene products using GO vocabulary terms and incorporating these annotations into their respective model organism databases. Each database contributes its annotation files to a shared GO data resource accessible to the public at http://www.geneontology.org/. The GO site can be used by the community both to recover the GO vocabularies and to access the annotated gene product data sets from the model organism databases. The GO Consortium supports the development of the GO database resource and provides tools enabling curators and researchers to query and manipulate the vocabularies. We believe that the shared development of this molecular annotation resource will contribute to the unification of biological information.

Animals↗

Case vignette: to share or not to share.

For years, the notion that researchers should share data freely with fellow scientists has been discussed widely. Some argue that this is especially true when the data are generated in federally funded projects. A recent provision in the reauthorization bill for the National Institutes of Health (NIH) would ensconce this principle in law. NIH grantees would be required, on demand, to furnish their data to other researchers. According to the proposed legislation, research data would have to be preserved and made avilable for 3 years after the completion of a project, and for 5 years following publication of the results in a scientific journal. One objective, according to a congressional aide, would be to make it easier for scientists with dissenting views to obtain and reanalyze data collected with public funds. It would also facilitate publication of alternative analyses. Personal records and patent applications would be exempted, but other data from clinical, behavioral, or epidemiological research focused on the evaluation or efficacy of a drug, medical device, or treatment of any sort would be covered immediately. Is such mandatory sharing of data ethical and appropriate scholarship? Does it raise potential for abuse? Should colleagues be required to provide such access to data, whether or not federal support was used in its collection?

Behavioral Research↗

Access control based on attribute certificates for medical intranet applications.

BACKGROUND: Clinical information systems frequently use intranet and Internet technologies. However these technologies have emphasized sharing and not security, despite the sensitive and private nature of much health information. Digital certificates (electronic documents which recognize an entity or its attributes) can be used to control access in clinical intranet applications. OBJECTIVES: To outline the need for access control in distributed clinical database systems, to describe the use of digital certificates and security policies, and to propose the architecture for a system using digital certificates, cryptography and security policy to control access to clinical intranet applications. METHODS: We have previously developed a security policy, DIMEDAC (Distributed Medical Database Access Control), which is compatible with emerging public key and privilege management infrastructure. In our implementation approach we propose the use of digital certificates, to be used in conjunction with DIMEDAC. RESULTS: Our proposed access control system consists of two phases: the ways users gain their security credentials; and how these credentials are used to access medical data. Three types of digital certificates are used: identity certificates for authentication; attribute certificates for authorization; and access-rule certificates for propagation of access control policy. Once a user is identified and authenticated, subsequent access decisions are based on a combination of identity and attribute certificates, with access-rule certificates providing the policy framework. CONCLUSIONS: Access control in clinical intranet applications can be successfully and securely managed through the use of digital certificates and the DIMEDAC security policy.

Certification↗

Informed decision making: the new paradigm.

Health care cannot survive in its present form. It is becoming unaffordable for a large share of the country's population. Its quality and effectiveness inexplicably vary between communities and across time. With all these problems, the process of health care can be understood. All that are needed are good, basic data; its access, management, and analysis; and then presentation of facts and observations. Together, these functions describe the translation of data into information--the field of medical informatics. Information about such management concerns as clinical efficiency (which largely is related to appropriateness and cost-effectiveness) and about the realities of day-to-day medical practice can be used to improve the value of health care. Informed decision making is based solely on confidence that, given the right information and understanding, we can all make the right decisions. The right decisions mean better patient acceptance and satisfaction, a sense of value enhancement by payers, and support of the Hippocratic tradition.

Decision Making, Organizational↗

Disabling injuries to childcare workers in Minnesota, 1985 to 1990. An analysis of potential risk factors.

Injuries to clients in childcare centers have been studied to some degree, but the problem of worker injuries in childcare centers has remained unexplored. To investigate this problem, data were accessed from two sources for the years 1985 to 1990: 1) Minnesota Department of Jobs and Training for data pertinent to the populations of childcare center workers for each year of the study, and the 2) Minnesota Department of Labor for all case files relevant to reported injuries incurred by childcare center workers for each year of the study. Data analyses were conducted of all injuries as well as a subanalysis of back injuries incurred by female workers. The overall injury rate for the 6-year period was 1.08 per 100 workers. Of the 440 childcare worker injury cases, a mean age of 32 years (range, 17 to 72 years) was identified; 50% of all cases were below the age of 29 years. Analysis by subclassifications of childcare workers indicated that cooks had the highest injury rate (3.61 per 100 workers) and the greatest mean number of weeks of temporary total disability (13.2 weeks). According to anatomic site, injuries involving the back accounted for the greatest proportion of the total injuries (34.1%); 49% involved lifting a child. To protect childcare workers adequately, additional policies and regulations will be required, as well as further study in this area. Emphasis in the area of back injury is clearly needed, including education on proper lifting techniques and relevant application of engineering technology.(ABSTRACT TRUNCATED AT 250 WORDS)

Absenteeism↗

Potential meets reality: GIS and public health research in Australia.

Geographical Information Systems-computerised systems for the capture, storage, retrieval, analysis and display of spatial data-have recently been promoted as important tools for the study of public health. Attention must also be given to the issues involved in this relatively new application, especially in Australian conditions. These include the coarse spatial resolution of most health and social data, the propagation of error through the need to use estimates and concordance tables to handle data in mismatched official spatial boundaries, the inflexible analytical capacity of most GIS for the needs of epidemiology, and difficulties in access to data, which are compounded by the absence of a good metadata register. The conflict between the need for spatial precision in GIS and preserving the confidentiality of health data is a salient issue. Medical geographers and public health researchers using GIS must recognise these issues in order to work together and toward extending the use of GIS technology beyond broad ecological and accessibility studies.

Australia↗

Image archival technologies.

A typical radiology department can create many gigabytes of image data per day and as much as 1 terabyte of data per year. Archiving and accessing this much data are substantial problems. One solution is data compression, which decreases data storage requirements and increases the rate of data transfer; however, standards are not yet available. Other solutions involve improvements in archival media. Jukebox subsystems allow automated access to multiple units. Digital magnetic tape, the standard medium, can store large amounts of information and enables easy updates or replacements; more practical technologies have been introduced in recent years. Digital videotape allows storage of digital video data and features a high rate of data transfer. Optical disks, now the preferred permanent archival medium, have a large storage capacity and provide excellent long-term stability. Optical tape is also being investigated as a solution to the archiving dilemma. Which technology to choose depends on many factors, including needs of the institution and the cost, stability, transfer time, and storage capacity of the system.

Computer Storage Devices↗

Setting standards based on patients' views on access and continuity: secondary analysis of data from the general practice assessment survey.

OBJECTIVES: To examine patients' views on access and continuity in general practice to derive quality standards. DESIGN: Secondary analysis of data from general practice research studies and routine quality assessment activities undertaken by practices and primary care trusts. SETTING: General practice. PARTICIPANTS: General practice patients. RESULTS: Satisfactory standards of access were next day appointments with general practitioners and a 6-10 minute wait for consultations to begin. A satisfactory level of continuity was seeing the same general practitioner "a lot of the time." Standards varied with the analytic method used and by sociodemographic group. CONCLUSIONS: Standards expected by patients in primary care can be derived from linked report-assessment pairs. Patients may have expectations of access that are in excess of government targets. Patients also have high expectations of continuity of care. It is unclear the degree to which such standards are reliable or valid, how conflicts between access and continuity should be resolved, or how these standards relate to other priorities of patients such as high quality interpersonal care.

Adolescent↗

Rapid accessibility of nucleosomal DNA in yeast on a second time scale.

Packaging DNA in nucleosomes and higher-order chromatin structures restricts its accessibility and constitutes a barrier for all DNA transactions including gene regulation and DNA repair. How and how fast proteins find access to DNA buried in chromatin of living cells is poorly understood. To address this question in a real time in vivo approach, we investigated DNA repair by photolyase in yeast. We show that overexpressed photolyase, a light-dependent DNA-repair enzyme, recognizes and repairs UV-damaged DNA within seconds. Rapid repair was observed in various nucleosomal regions of the genome including inactive and active genes and repressed promoters. About 50% of cyclobutane pyrimidine dimers were removed in 5 s, >80% in 90 s. Heterochromatin was repaired within minutes, centromeres were not repaired. Consistent with fast conformational transitions of nucleosomes observed in vitro, this rapid repair strongly suggests that spontaneous unwrapping of nucleosomes rather than histone dissociation or chromatin remodeling provides DNA access. The data impact our view on the repressive and dynamic nature of chromatin and illustrate how proteins like photolyase can access DNA in structurally and functionally diverse chromatin regions.

Centromere↗

The impact of water supply and sanitation on area differentials in the decline of diarrhoeal disease mortality among infants in Stockholm 1878-1925.

This study analyses the impact of improved water supply and sanitation on the level and rate of decline of child diarrhoea mortality in Stockholm 1878-1925. Previous studies have failed to demonstrate an effect of improved water supply on the risk of diarrhoea mortality at the individual level. Using data on access to water and sanitation from a household survey in 1895 and mortality rates and sociodemographic information from individual data 1878-1925 to analyse area differentials in diarrhoea mortality, it was found that the proportion having their own latrine in the household was associated with lower mortality risk in 1895-1900, while the proportion having water in the household was associated with lower diarrhoea mortality risk during the mortality decline until 1925. Population effects of improved water and sanitation on diarrhoea mortality may be better measured at area level than at individual level.

Diarrhea, Infantile↗

The Merck Gene Index browser: an extensible data integration system for gene finding, gene characterization and EST data mining.

MOTIVATION: To make effective use of the vast amounts of expressed sequence tag (EST) sequence data generated by the Merck-sponsored EST project and other similar efforts, sequences must be organized into gene classes, and scientists must be able to 'mine' the gene class data in the context of related genomic data. RESULTS: This paper presents the Merck Gene Index browser, an easily extensible, World Wide Web-based system for mining the Merck Gene Index (MGI) and related genomic data. The MGI is a non-redundant set of clones and sequences, each representing a distinct gene, constructed from all high-quality 3' EST sequences generated by the Merck-sponsored EST project. The MGI browser integrates data from a variety of sources and storage formats, both local and remote, using an eclectic integration strategy, including a federation of relational databases, a local data warehouse and simple hypertext links. Data currently integrated include: LENS cDNA clone and EST data, dbEST protein and non-EST nucleic acid similarity data, WashU sequence chromatograms. Entrez sequence and Medline entries, and UniGene gene clusters. Flatfile sequence data are accessed using the Bioapps server, an internally developed client-server system that supports generic sequence analysis applications. Browser data are retrieved and formatted by means of the Bioinformatics Data Integration Toolkit (B-DIT), a new suite of Perl routines.

Abstracting and Indexing↗

Integrated databanks access and sequence/structure analysis services at the PBIL.

The World Wide Web server of the PBIL (Pôle Bioinformatique Lyonnais) provides on-line access to sequence databanks and to many tools of nucleic acid and protein sequence analyses. This server allows to query nucleotide sequence banks in the EMBL and GenBank formats and protein sequence banks in the SWISS-PROT and PIR formats. The query engine on which our data bank access is based is the ACNUC system. It allows the possibility to build complex queries to access functional zones of biological interest and to retrieve large sequence sets. Of special interest are the unique features provided by this system to query the data banks of gene families developed at the PBIL. The server also provides access to a wide range of sequence analysis methods: similarity search programs, multiple alignments, protein structure prediction and multivariate statistics. An originality of this server is the integration of these two aspects: sequence retrieval and sequence analysis. Indeed, thanks to the introduction of re-usable lists, it is possible to perform treatments on large sets of data. The PBIL server can be reached at: http://pbil.univ-lyon1.fr.

Databases, Genetic↗

Medical decision support: experience with implementing the Arden Syntax at the Columbia-Presbyterian Medical Center.

We began implementation of a medical decision support system (MDSS) at the Columbia-Presbyterian Medical Center (CPMC) using the Arden Syntax in 1992. The Clinical Event Monitor which executes the Medical Logic Modules (MLMs) runs on a mainframe computer. Data are stored in a relational database and accessed via PL/I programs known as Data Access Modules (DAMs). Currently we have 18 clinical, 12 research and 10 administrative MLMs. On average, the clinical MLMs generate 50357 simple interpretations of laboratory data and 1080 alerts each month. The number of alerts actually read varies by subject of the MLM from 32.4% to 73.5%. Most simple interpretations are not read at all. A significant problem of MLMs is maintenance, and changes in laboratory testing and message output can impair MLM execution significantly. We are now using relational database technology and coded MLM output to study the process outcome of our MDSS.

Academic Medical Centers↗