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A software architecture to support a large-scale, multi-tier clinical information system.

A robust software architecture is necessary to support a large-scale multi-tier clinical information system. This paper describes our mechanism for enterprise distribution of applications and support files, the consolidation of data-access functions and system utilities stored on the data access tier, and an application framework which implements a coherent clinical computing environment. The software architecture and systems described in this paper have been robust through pilot testing of our applications at Massachusetts General Hospital.

Computer Security↗

Bioinformatics tools for single nucleotide polymorphism discovery and analysis.

Single nucleotide polymorphisms (SNPs) are a valuable resource for investigating the genetic basis of disease. These variants can serve as markers for fine-scale genetic mapping experiments and genome-wide association studies. Certain of these nucleotide polymorphisms may predispose individuals to illnesses such as diabetes, hypertension, or cancer, or affect disease progression. Bioinformatics techniques can play an important role in SNP discovery and analysis. We use computational methods to identify SNPs and to predict whether they are likely to be neutral or deleterious. We also use informatics to annotate genes that contain SNPs. To make this information available to the research community, we provide a variety of Internet-accessible tools for data access and display. These tools allow researchers to retrieve data about SNPs based on gene of interest, genetic or physical map location, or expression pattern.

Chromosome Mapping↗

Evaluation of the personal dental services (wave 1) for Lambeth, Southwark and Lewisham primary care trusts--Part 1: Retrospective analyses of registration data and access issues.

AIM/OBJECTIVE: The purpose of the study was to undertake analyses of registration data for the personal dental services (PDS) of Lambeth, Southwark and Lewisham primary care trusts and relate the analyses to the PDS goal of increasing uptake of dental services. METHOD: Secondary analyses of registration statistics provided by the Dental Practice Board were undertaken for both 1 years pre-PDS (October 1997 to September 1998) and post-PDS (October 1998 to March 2003) periods. Three sets of analyses were undertaken to consider different aspects of changing registrations: (1) Absolute numbers of patients registered at each time interval; (2) Rates of change in numbers of patients registered for the entire period after the introduction of PDS; and (3) Rates of change in numbers of patients registered for the most recent 3 years of available data. RESULTS: There was a significant increase in the numbers of children registered under capitation, post-PDS as compared to the pre-PDS level (all ages and both genders combined). Post-PDS, the rate of increase for the children was approximately one additional child per practice per month (0.96, 95% CI 0.41-1.52). Similarly there was a significant trend for increasing adults registrations over time of about two and a half adults per practice per month (2.42, 95% CI 0.90-3.95). There was no evidence of a change in registrations for children or adults in total over the most recent period of 3 years. CONCLUSIONS: The analysis of the absolute numbers of registered patients each month indicated that the PDS practices had more children registered than before the implementation of the PDS scheme, but not adults. Overall post-implementation there was a trend for increasing registrations in both children and adults, but the most recent data indicated a plateau effect. Further consideration of facilitators to achieve PDS goals of improved uptake of services is required, particularly as they relate to local contexts.

Adolescent↗

A direct approach to control short term population dynamics in time series studies.

BACKGROUND: Short term population dynamics is an important issue in several epidemiological studies. Usually, calendar time or dummy variables are used to control indirectly for this confounding. This study tested a direct method. METHODS: The study compared as proxy variables of population dynamics the summer 2003 data of cooking gas consumptions, solid urban waste production, and television access for the municipality of Bologna (Italy). RESULTS: Solid urban waste production and television access data showed similar trends. Considerably different were the >65 year olds estimates with respect to total population based on television access. CONCLUSIONS: Television access data are probably the best indicator in the estimates of population dynamics in large or densely populated areas, especially because of the possibility of stratifications with respect to age.

Aged↗

Migration of the Japanese healthcare enterprise from a financial to integrated management: strategy and architecture.

The Hospital Information System (HIS) has been positioned as the hub of the healthcare information management architecture. In Japan, the billing system assigns an "insurance disease names" to performed exams based on the diagnosis type. Departmental systems provide localized, departmental services, such as order receipt and diagnostic reporting, but do not provide patient demographic information. The system above has many problems. The departmental system's terminals and the HIS's terminals are not integrated. Duplicate data entry introduces errors and increases workloads. Order and exam data managed by the HIS can be sent to the billing system, but departmental data cannot usually be entered. Additionally, billing systems usually keep departmental data for only a short time before it is deleted. The billing system provides payment based on what is entered. The billing system is oriented towards diagnoses. Most importantly, the system is geared towards generating billing reports rather than at providing high-quality patient care. The role of the application server is that of a mediator between system components. Data and events generated by system components are sent to the application server that routes them to appropriate destinations. It also records all system events, including state changes to clinical data, access of clinical data and so on. Finally, the Resource Management System identifies all system resources available to the enterprise. The departmental systems are responsible for managing data and clinical processes at a departmental level. The client interacts with the system via the application server, which provides a general set of system-level functions. The system is implemented using current technologies CORBA and HTTP. System data is collected by the application server and assembled into XML documents for delivery to clients. Clients can access these URLs using standard HTTP clients, since each department provides an HTTP compliant web-server. We have implemented an integrated system communicating via CORBA middleware, consisting of an application server, endoscopy departmental server, pathology departmental server and wrappered legacy HIS. We have found this new approach solves the problems outlined earlier. It provides the services needed to ensure that data is never lost and is always available, that events that occur in the hospital are always captured, and that resources are managed and tracked effectively. Finally, it reduces costs, raises efficiency, increases the quality of patient care, and ultimately saves lives. Now, we are going to integrate all remaining hospital departments, and ultimately, all hospital functions.

Computer Systems↗

"It just feels morally not right to Sell the data": Ethical and social perspectives on human genomic data sharing in Uganda-A phenomenological qualitative study.

While genomic data sharing enhances transparency and research efficiency, it also raises significant ethical and social challenges. This study explored stakeholders' perspectives on these issues, particularly around privacy, confidentiality, and equity in collaborative research. A phenomenological qualitative study was conducted between August and December 2023 at Makerere University College of Health Sciences, other research-intensive institutions, and national regulatory bodies. The study engaged 86 participants: 47 key informants (16 researchers, 14 ethics committee members, nine community advisory board members, and eight research regulators) and four deliberative focus group discussions with 39 participants. Interviews were transcribed verbatim, and thematic analysis was conducted using NVivo 14. Three major themes emerged: (1) stakeholders' experiences in genomic research, including their roles as participants, implementers, or overseers; (2) ethical concerns, such as informed consent, third-party data access, inequities between high-income and low- and middle-income country (LMIC) researchers and participants, and the lack of benefit-sharing frameworks; and (3) social implications, including stigma, discrimination, labeling, community perceptions of fairness, and the need for meaningful engagement. Participants emphasized the importance of protecting participant rights, promoting equity, and ensuring robust data governance and security. The theoretical frameworks of principlism and distributive justice provided a valuable lens for examining these concerns, particularly by highlighting the need to safeguard privacy and fairly distribute responsibilities and benefits in global collaborations. Participants also noted that perceptions of fairness are shaped by trust, local context, and past experiences with research factors that are critical for building equitable and respectful partnerships. This study underscores the urgent need to strengthen protections for research participants and promote fairness in genomic data sharing. Policies should, if adopted, emphasize culturally contextualized consent, active community engagement, restricted third-party data access, and strong data protection mechanisms to address existing inequities and prevent misuse.

LMICs↗

Clinical information systems.

Clinical information systems are the computer and information systems used by health care personnel to facilitate patient care. These systems have evolved from financial systems to true patient care systems with variable levels of functionality. Early systems provided laboratory and radiology results, and modern systems now provide copies of the radiology images and decision support for therapeutic orders. The rapidly changing technological infrastructure has created barriers to implementation of the electronic medical record, while coding schemes continue to be refined to enable data access and aggregate data analysis. Further refinement of clinical information systems is required before the potential value of these systems is realized in the clinical management of patients.

Child↗

[Data processing the the RAST laboratory].

We describe a clinical laboratory information system for the RAST laboratory based on personal computers. In developing this system, we paid special attention to easy handling which does not require any computer experience on the user's side. Data storage and retrieval are managed by a relational database system with fast data access. Aside from the usual functions of a laboratory information system, the laboratory work is facilitated by a clear distribution of samples, the possible on-line connection to various analyzers, as well as the provision of cumulative results and a fast access to archive data.

Allergens↗

Issues in data sharing and access: an industry perspective.

Epidemiologic data sharing and access, and information sharing and access, are complex issues with no consensus within the industrial community. The purpose of this paper is to provide an introduction, as well as some personal perspectives, to the issues of data access and sharing. These perspectives include a discussion of types of data sharing, advantages and barriers to openness, and alternatives that lower the need for sharing of the raw data.

Confidentiality↗

Access to data and the information explosion: oral contraceptives and risk of cancer.

This report describes a technically feasible method to deal with the enormous volume of literature published regarding oral contraceptives. This subject was discussed in 3735 publications during the period from November 1977 through October 1980. Our findings showed that those papers reporting original, numeric relationships involving risk of cancer and use of oral contraceptives were one percent of the total 3735 publications. However, only seven of the 27 articles involved were authored by individuals from departments of obstetrics and gynecology. Further, only four of the 27 were published in journals devoted to obstetrics and gynecology. The analyses suggest a form of censorship taking place, in that the obstetrics/gynecology specialists do not have ready access to the primary data.

Contraceptives, Oral↗

TongueTwister: an integrated program for analyzing lickometer data.

The analysis of lickometer data is often rendered prohibitively tedious by the large volume of data generated by the typical experiment. TongueTwister is an integrated program for the rapid and automatic analysis, presentation, and summary of long- and medium-access data collected by lickometers or of brief-access data collected by multi-bottle lickometers such as the DiLog Instruments MS80. The program was written in C+2 for Macintosh computers, and analyzes data collected by MS-DOS PCs. It takes advantage of the Macintosh user interface to provide quick and convenient output from all the files of a single experimental session, and to export the data to third-party statistical software or other documents. It can batch-process data files by automatically opening and analyzing all the files in a directory; thus, the user can employ directories as a simple database for organizing experimental groups. When a lickometer data file is opened, a textual summary, a raster plot of the lick pattern, the cumulative licks, the lick rate, a histogram of inter-lick intervals, and a breakdown of the session by fractions are automatically calculated and displayed. When an MS80 brief-access file is opened, the lick pattern for each tube presentation and a textual summary of the mean values derived for each tube are automatically displayed. If a directory of files is opened, the mean values derived across all the individual files are calculated and graphed. Analysis parameters can be tailored to the investigator's liking. Tables or graphs can be saved to disk, or copied and pasted into other Macintosh programs for additional analysis. The program may also be used for general-purpose analysis of periodic event records.

Animals↗

Web access to data in a mobile ECG monitoring system.

Cardiovascular diseases and, in particular, diseases related to arrhythmias are a problem that affects a significant percentage of the population, being one of the major causes of death in Europe. New advances in the fields of PDAs, mobile phones, wireless communications and vital parameter sensors have permitted the development of revolutionary medical monitoring systems, which strikingly improve the lifestyle of patients. However, not all those monitoring systems provide patients with real assistance - anywhere and at any time. We have developed a system that goes a step further than the previous approaches, being designed to capture, record and, as a distinctive feature, locally analyze the ECG signals in a PDA carried by the patient. In that sense, the system has a decision support module based on decision tree methods that can detect, with high precision, any arrhythmias that the user may be suffering. Alarms can then be activated in time to alert a medical center in order to provide the proper medical assistance. One of our aims when building the system has been to optimize limited and expensive resources like PDA memory size and wireless communication costs. Moreover, accessibility is also an important feature of the system that has been achieved by the development of web services to query the data computed in the PDA. In this way, authorized personnel (physicians and relatives) can easily obtain access to that data.

Computer Systems↗

Beefing up your storage networks: a solution for disaster recovery.

Redundancy of all technologies involved in securing, accounting, transporting, authenticating and authorizing access to patient record data is vital to ensuring against practices and procedures that might be construed as HIPAA violations or threats to patient well-being. This is particularly notable in data storage technologies, where it is critical to store multiple, redundant, synchronized copies of the electronic patient record, including all radiological imagery in all modalities, to prevent a HIPAA-related compliance issue from being raised. This involves constructing storage networks that are simple to maintain, yet have sufficient flexibility and resiliency of design to ensure future growth and increasing disaster tolerance without affecting radiological operations or patient record data access at any time, i.e., a zero-disruption storage architecture. In terms of time, the optimal set of technologies to create a zero-time recovery window involve geographically dispersed computing and storage facilities, interconnected by several redundant but logically and physically separate networks. In this architecture, patient record data is kept in multiple locations via synchronous mirroring or replication techniques, assuring realtime updating of all instances of the patient record. In addition, zero-time recovery mandates the use of online magnetic disk technologies in all locations to hold enough patient record data to perform all necessary and sufficient examinations and consultations. Hospitals are finding that using networked storage technology from vendors who have pre-qualified their technology with existing healthcare imaging applications creates secure, highly available access to data. Other facets to consider for selecting an optimal solution for radiology data storage and disaster recovery include choosing a solution that is standards-based, easy to implement and operate, and requires minimal full-time-equivalent (FTE) staff hours. For radiology applications, look for a system that removes complexity from storage management. The current need to meet HIPAA regulations actually creates a positive opportunity for hospitals to re-examine and upgrade their data management procedures to ensure less interaction by FTE staff. Electronic data can be made more secure than paper data, is much faster to retrieve, and can be viewed in multiple locations at the same time. However, these benefits are lost if a healthcare organization implements a cumbersome system that integrates poorly with existing applications and networks, and requires intensive administration.

Computer Security↗

A framework for uniform access to data, software and knowledge.

An object-oriented framework is presented that offers integration of various types of entities at one workstation. Five types of entities are distinguished: data, knowledge, functions, presentation forms and hardware, and for each of these entities an 'accessor' is introduced. An accessor offers abstraction from the particularities of access to the entities. For the interaction with this framework a programming language has been defined. A restricted form of the framework has been used to implement a prototype medical workstation for the support of clinical data analysis.

Artificial Intelligence↗