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Protecting the privacy of patient information in clinical networks: regulatory effectiveness analysis.

Patient privacy is one of the major issues in the development of modern clinical information system networks. Such networks will have to demonstrate an appropriate concern for privacy as a precondition of operation. Regulatory effectiveness analysis is a novel technique for measuring compliance with a technological regulatory system. By examining the public policies, legal structures, and technical tools involved in the regulatory system, it is possible to discover discontinuities that may result in noncompliance with the regulatory system.

Civil Rights↗

How social context impacts on women's fears of childbirth: a Western Australian example.

This paper addresses the limited sociological understanding of the phenomena of childbirth fear using data from a qualitative research project conducted in Western Australia. This qualitative study used an exploratory descriptive design, with 22 women identified as being fearful of birth participating in an in-depth interview. Data analysis using the method of constant comparison revealed that social context, explored within the framework of the medicalisation of childbirth, and the intervening circumstances in which the women gave birth, impacted on how and why they experienced fear. As such, this paper argues that fear of childbirth has social as well as personal dimensions and is both a prospective and retrospective phenomena. The analysis identified prospective fear as both social and personal. The social dimensions were labelled as 'fear of the unknown', 'horror stories' and 'general fear for the well-being of the baby'. Personal dimensions included the 'fear of pain', 'losing control and disempowerment' and 'uniqueness of each birth'. Retrospective fear was exclusively personal and was clustered around the themes of 'previous horror birth' and 'speed of birth'. The analysis also revealed two central factors that mediated against childbirth fear: positive relationships formed with midwives, and the support women received from their informal network. Understanding and unpacking the dimensions of women's childbirth fear, and understanding the nature of relationships that mediate women's fear, provides health care professionals with information on which to base potential intervention strategies and support women in ways that lessen rather than heighten their fear.

Adult↗

Differences in outcome with subspecialty care: pyloromyotomy in North Carolina.

BACKGROUND/PURPOSE: Proponents of subspecialization in surgery claim that fellowship training improves the quality of care. Others claim that general training is adequate for most routine surgical procedures. The authors questioned whether there were differences in outcomes when general surgeons (GEN) operate on children and infants with common surgical conditions compared with the care of their pediatric surgical (PED) colleagues. METHODS: The authors retrospectively reviewed the Healthcare Investment Analysts North Carolina Information Network database to identify patients who underwent pyloromyotomy for congenital hypertrophic pyloric stenosis in North Carolina during the period from October 1995 through September 1998 (n = 780). Information obtained included demographics, insurance type, hospital, length of stay, total hospital charges, occurrence of mucosal perforation, and type of surgeon (general v pediatric). RESULTS: Of the 780 pyloromyotomies performed, 363 (48%) were performed by pediatric surgeons. Pediatric surgeons cared for more Medicaid patients than general surgeons (PED, 52% v GEN, 40%; P =.001). Infants treated by pediatric surgeons had a lower incidence of mucosal perforation (PED, 0.5% v GEN, 2.9%; P =.0015), which was associated with decreased overall total hospital charges (no perforation, $4,806 plus minus 79 v perforation, $6,592 plus minus 492; P =.002). When patients with uncomplicated pyloric stenosis were evaluated (96% of cases), those cared for by pediatric surgeons had lower total hospital charges (PED, $4,496 plus minus 95 v GEN, $5,121 plus minus 121; P =.0001) and shorter length of stay (PED, 2.7 plus minus 0.1 days v GEN, 3.1 plus minus 0.1 days; P =.01). CONCLUSIONS: In North Carolina, general surgeons treat more than half the patients who have pyloric stenosis, though fewer with Medicaid. The cost and incidence of mucosal perforation were increased in infants with pyloric stenosis when care was provided by general rather than pediatric surgeons.

Databases as Topic↗

Neologisms in medical practice: their potential to be 'useful', 'useless' or 'misleading'.

BACKGROUND: The advances in human endeavours have led to changes in technology. New words, neologisms, have been creeping up and are coined with astounding speed. While these terms are fascinating etymologically, their impact needs to be appreciated from a realistic perspective to keep one aware of the collateral changes we are importing into common language, particularly in medical practice. The aim of this paper is to identify some of such neologisms, outline their current use and then discuss their potential to be 'useful' 'useless' or 'misleading'. METHODS: Terminologies in medical practice and information technology have been selected by the authors and their meanings have been analysed. RESULTS: The terminologies of our present interest include: Computer literacy; Surfing the web; Networking; Information technology; Medical informatics; Telemedicine; Capacity building; Problem-based learning; Mentoring; Learning curve; Evidence-based medicine; Impression; Comorbid conditions; Family medicine; Andropause; Surgical site infection; Confidence interval. CONCLUSION: Neologisms are inescapable in the face of rapid advances in knowledge, equipment and information dissemination to and through diverse cultures and languages. In their assimilation, we should be considerate in discarding familiar terms that have served time.

Humans↗

The interactive image tool: adding structure to images.

The interactive image format and tool were developed by the Stanford University Medical Media and Information Technologies (SUMMIT) group to allow medical educators to add interactive annotations and outlines to medical cross-sections, gross dissections, and clinical images. The interactive image tool (IIT) format offers a general specification for adding structural information to images. The IIT format has been used to create rich databases of image/structure information which are employed in educational software created at SUMMIT. These databases consist of information which is re-usable in other applications as well as a standalone image database. Future extensions to the IIT format will provide a means to organize information based on the structure of that information rather than on the arbitrary or haphazard links of current hypertext and hypermedia information networks.

Anatomy↗

[Using natural helping systems].

Professional psychiatric help alone is not sufficient especially in the treatment of chronic mental illness. One must offer additional support also known as social support or social network. Informal helpers are family members, friends, civilian helpers, self-help groups with contracts to media and political levels and so on. In spite of different aims they have a great deal in common such as free-of-charge help, assistance to professional helpers not as their substitutes, and being in touch with normal everyday life. Any tensions between professional and informal helpers should be relieved in a constructive manner. Support by informal carers must also be assessed although it is difficult to find the correct approach, since so many variables are involved. The significance of promoting a social network for mental health becomes particularly evident in view of the reduction of the social network in persons suffering from schizophrenia.

Caregivers↗

HallmarkGraph: a cancer hallmark informed graph neural network for classifying hierarchical tumor subtypes.

MOTIVATION: Accurate tumor subtype diagnosis is crucial for precision oncology, yet current methodologies face significant challenges. These include balancing model accuracy with interpretability and the high costs of generating multi-omics data in clinical settings. Moreover, there is a lack of validated models capable of classifying hierarchical tumor subtypes across a comprehensive pan-cancer cohort. RESULTS: We present a graph neural network, HallmarkGraph, the first biologically informed model developed to classify hierarchical tumor subtypes in human cancer. Inspired by cancer hallmarks, the model's architecture integrates transcriptome profiles and gene regulatory interactions to perform multi-label classification. We evaluate the model on a comprehensive pan-cancer cohort comprising 11 476 samples from 26 primary cancers with 405 subtypes up to eight levels. The model demonstrates exceptional performance, achieving 5-fold cross-validation accuracy between 85% and 99% for tumor subtypes labeled with increasing details of genomic information. It also shows good generalizability on a validation dataset of 887 samples, assessed using three metrics that consider tumor subtypes at individual, combined, and sample levels. Benchmarking and ablation experiments show that hallmark-based embeddings slightly influence model performance, while the integrated multilayer perceptron plays a significant role in determining classifier accuracy. Additionally, we use the SHAP method to link cancer hallmarks with genes, identifying key features that influence model decisions. Our findings present a biologically informed machine learning framework capable of tracking tumor transcriptomic trajectories and distinguishing inter- and intra-tumor heterogeneity in pan-cancer. This approach holds promise for enhancing cancer diagnostics. AVAILABILITY AND IMPLEMENTATION: HallmarkGraph is accessible at https://github.com/laixn/HallmarkGraph.

Humans↗

The component-based architecture of the HELIOS medical software engineering environment.

The constitution of highly integrated health information networks and the growth of multimedia technologies raise new challenges for the development of medical applications. We describe in this paper the general architecture of the HELIOS medical software engineering environment devoted to the development and maintenance of multimedia distributed medical applications. HELIOS is made of a set of software components, federated by a communication channel called the HELIOS Unification Bus. The HELIOS kernel includes three main components, the Analysis-Design and Environment, the Object Information System and the Interface Manager. HELIOS services consist in a collection of toolkits providing the necessary facilities to medical application developers. They include Image Related services, a Natural Language Processor, a Decision Support System and Connection services. The project gives special attention to both object-oriented approaches and software re-usability that are considered crucial steps towards the development of more reliable, coherent and integrated applications.

Computer Communication Networks↗

A regulatory network underlying idiopathic pulmonary fibrosis.

BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is a progressive interstitial lung disease in which genetic susceptibility interacts with epithelial, immune, and mesenchymal remodeling. Although the chromosome 11p15.5 locus contains established IPF susceptibility signals near MUC5B and TOLLIP, the broader regulatory architecture of this region remains incompletely resolved. METHODS: We integrated IPF genome-wide association study summary statistics with methylation, expression, and protein quantitative trait loci using summary-data-based Mendelian randomization (SMR). SMR-prioritized candidates were evaluated in independent transcriptomic and methylation cohorts and further contextualized using microRNA, transcription-factor, protein-interaction, machine-learning, single-cell, and spatial transcriptomic analyses. Fibrosis-associated expression patterns were assessed in a bleomycin-induced pulmonary fibrosis rat model. RESULTS: The analyses recovered the established MUC5B and TOLLIP signals and prioritized BRSK2 as a comparatively underexplored candidate supported by eQTL-based SMR and independent molecular evidence. The BRSK2 pQTL association did not pass the HEIDI test and was therefore not interpreted as convergent protein-level genetic evidence. Network analyses linked BRSK2 to cell-cycle, metabolic-stress, and senescence-related programs, while cross-cohort machine learning prioritized FOXA2, CDC25B, and NFE2 as informative network features. Single-cell and spatial analyses localized BRSK2 preferentially to fibroblast and myofibroblast compartments and to regions with greater histological fibrosis severity. In fibrotic rat lungs, BRSK2 expression increased, whereas FOXA2 and CDC25B decreased at the transcript and protein levels. CONCLUSIONS: These findings refine the molecular landscape of the chromosome 11p15.5 IPF susceptibility locus and prioritize BRSK2 as a candidate component of an IPF-associated profibrotic fibroblast state. Its causal contribution, direct regulatory relationships, and therapeutic tractability require targeted mechanistic validation.

Idiopathic Pulmonary Fibrosis↗

Scale-free networks in biology: new insights into the fundamentals of evolution?

Scale-free network models describe many natural and social phenomena. In particular, networks of interacting components of a living cell were shown to possess scale-free properties. A recent study((1)) compares the system-level properties of metabolic and information networks in 43 archaeal, bacterial and eukaryal species and claims that the scale-free organization of these networks is more conserved during evolution than their content.

Archaea↗

Developing key laboratory performance indicators: a feasibility study. Potential roles for CLMA.

The challenges (and opportunities) for laboratory management posed by cost control, managed care, information networks, and health system integration call for both short- and long-term responses. In rapidly evolving markets, new measures are needed to assess how effectively laboratories manage the information process. The objective of the research described in this report was to determine the feasibility of a system that would collect, analyze, and report nationally standardized indicators of laboratory performance and that would meet the needs of health system executives, managed care plans, and external agencies, as well as laboratory service providers. The feasibility study involved extensive interviews with a broad cross-section of the health-care industry, as well as a literature search of journals, newspapers, marketing brochures, and other documents addressing comparative performance assessment in the health-care industry. The study investigated the current status of comparative performance assessment in the health-care industry. We found that there are several important lessons laboratorians can learn from the experiences of others involved in key indicator development and performance assessment: Key indicators must measure those aspects of performance that are important and meaningful to laboratory customers. Indicators developed for laboratory management performance should be compatible with performance criteria established in other health-care sectors, particularly those that represent managed care and other customers of laboratory services. The identification of participants in the process of consensus development should be as inclusive as possible if the indicators are to gain wide acceptance. Standardized definitions and data collection rules are essential for data comparability. Credibility is key. It is necessary that the chosen measures be not only reliable, valid, and easy to implement, they must also be demonstrably related to patient care outcomes. In order to make meaningful interlaboratory comparisons, an effective system for peer groupings is also required. Currently available systems for collecting and reporting laboratory performance data were also reviewed.(ABSTRACT TRUNCATED AT 400 WORDS)

Clinical Laboratory Information Systems↗

Administrative and security challenges with electronic patient record systems.

EPRS security is clearly an area of concern to all health information management professionals. With the advent of enterprise-wide linkages, as well as community health information networks (CHINs) and other remote linkages, security is a critical issue that must be addressed in detail during system selection and implementation. Strict enforcement of security policies and procedures is mandatory. Technology has given health information management professionals the tools to secure the patient record. Use of these tools is required to meet the challenges presented by the transition to the electronic realm.

Authorship↗

Strategic constraints in health informatics: are expectations realistic?

In response to demands to enhance the efficiency and accountability of health systems, a range of different information technologies are being promoted. These technologies include integrated hospital systems, community health information networks and data repositories. However, the record of such technologies inside and outside the health industry suggest that such technologies cannot necessarily be relied on. The reason identified is that information systems are inherently logical and rational systems, and often come into conflict with the less rational social systems of organizations. Health information is identified in terms of three basic dimensions of information; that associated with managers; with professionals; and, with patients. The information of these dimensions are focused on very different objectives, have different structures and functions and are controlled by very different social processes. The information is also very complex and diverse within the dimensions. In the clinical encounter the clinician draws on specialist expertise, satisfies administrative requirements, and provides a clinical record. Thus, these dimensions converge at that point. However, collecting information is costly, and an efficient service demands economy in data collection. However, the technologies being promoted demand 'complete' data acquisition based on consistent and stable data definitions and data structures. The article argues that there is, thus, a conflict between the requirements of these technologies, and the realities of providing efficient services within a changing organizational, professional and social environment.

Clinical Medicine↗

Health information privacy: without confidentiality.

The relation between privacy and confidentiality is critically discussed. The need to be able to process data for epidemiology and management is presented. Too often the protection of privacy is considered to be a synonym of denying access to the patient's data. The function of the Canadian National Institute for Health Information is mentioned as as example of a wider trend to have a national focal point in the development of national databanks and for administering health information networks. Protection of privacy is considered to be the most important threat to the effectiveness of such networks.

Canada↗

Physician bonding: one hospital's experience.

In year one, hospital management has concluded that the objective of establishing a cost-effective physician bonding program has been realized. Early indications suggest that fundamental demand for services have increased. Additional data are being accumulated to assess the impact of the program on shifting referral patterns. Phase II expansion will continue in year two by continued recruitment efforts to include physicians, clinics and hospitals in an expanded geographic area of interest to the hospital. A Phase III community healthcare network is under consideration with proposals to the other two local hospitals. Two additional hospitals in the state are establishing compatible networks with the invitation to join the public utility in the future. As a reaction to environmental changes and increasing competition, hospitals are exploring several options to strategically position and strengthen their institutions. One of these options, the hospital-physician information network, appears to have an impact on bonding with physicians and thereby helping a hospital to maintain or increase market share. However, hospitals soon realize that the presence of a communications network alone does not achieve expected results -- stronger bonding and a positive effect on utilization. To be effective, a more comprehensive program is needed to help referral sources with their pressing needs and concerns. Based upon the findings at Saint Elizabeth Community Health Center, the impact on market share can be dramatic when the needs of the medical staff and primary-care referral sources are addressed in the design and implementation of the hospital-physician bonding program.

Computer Communication Networks↗

[Temporary medicosocial admission: alternative to hospitalization of elderly persons?].

The orientation of elderly patients, temporarily disabled, to acute care beds is inappropriate because of its adverse effects on functional status and its costs. The creation of short-stay units (SSU) in nursing homes provides an alternative to acute care hospitalization. The aim of this retrospective study, involving the first 64 patients oriented to the SSU from the emergency center, was to evaluate this new health care network. The analysis was focused on the rate of appropriate orientation (site of living at four month; subsequent medical events), as well as the functional quality of this health care network. Information were collected from medical records of the 64 patients oriented to SSU and 64 sex- and age-matched patients admitted during the same period, and the opinion of the network's partners. The mean age of patients and controls was 82 years. Four months after admission to the SSU, the orientation was considered appropriate in 58% of the cases (living at home without subsequent hospitalization), doubtful in 8%, and inappropriate in 33%; 27% of patients and 13% of controls were living definitely in nursing homes (p < 0.1). No medical or social characteristics was correlated to inappropriate orientations. In conclusion, the creation of SSU may be considered as an improvement in the care of elderly patients. The main problem of this orientation was the high percentage of patients living permanently in a nursing home four months later. Accurate assessment's tools capable to predict the subsequent decrease of the functional status should be used in the daily practice in order to improve the orientation of elderly patients.

Aged↗

Computational sequence analysis revisited: new databases, software tools, and the research opportunities they engender.

The increasing quantity and complexity of sequences and structural data for proteins and nucleic acids create both problems and opportunities for biomedical researchers. Fortunately, a new generation of practical computer tools for data analysis and integrated information retrieval is emerging. Recent developments in fast database searching, multiple sequence alignment, and molecular modeling are discussed and windows-based, mouse-driven software for CD-ROM and network information retrieval are described. Each method is illustrated with a practical example pertinent to lipid research. In particular, the connection among cholesteryl ester transfer protein, bactericidal permeability-increasing protein, and lipopolysaccharide-binding proteins is determined; novel repetitive sequence motifs in mammalian farnesyltransferase subunits and related yeast prenyltransferases are derived; biochemical insights from a three-dimensional model of human apolipoprotein D based on two insect lipocalins are discussed; the relationship between apolipoprotein D and gross cystic disease fluid protein from human breast is reviewed; and prospects for modeling apolipoprotein E-related proteins are described. In addition, information on a number of general and special-purpose sequence, motif, and structural databases is included.

Amino Acid Sequence↗

Medical Internet exchange project in Japan.

The Internet has been widely used by medical institutes and hospitals around the world, however; its use for telemedicine is still low. The main reason for this is the availability of bandwidth and poor security through the net. Meanwhile, we have established and have been operating 'Cancer Information Network' among 11 Cancer Centers in Japan, mainly for Multipoint TV Conference using HDTV image. There are also similar projects among 9 cardiovascular centers in Japan. By March, all 240 national hospitals will have been connected by an IP network using an ATM backbone. The above network projects are operated independently, and have an 'Intranet' characteristics within them. There are also many hospitals and clinics connected to the Internet by commercial internet providers. To make a secure and efficient network between these medical networks and medical sites, we started the Medical Internet eXchange project (MDX project) constructing a Medical Network Operation Center to create a link between them. To provide the administrative policy of this project, we established the Medical Internet eXchange Association. We are planning to expand this project to Asian-Pacific countries using the Asian-Pacific Advanced Network (APAN), and also expand it to worldwide connections in the future. For this purpose, we are currently asking other countries to form a structure similar to MDX-Japan. The concept, hardware system, software system, firewall configuration, and routing policy will be also discussed.

Computer Systems↗