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Directions for clinical research and genomic research into the next decade: implications for informatics.

Medical informatics is defined largely by its host disciplines in clinical and biological medicine, and to project the agenda for informatics into the next decade, the health community must envision the broad context of biomedical research. This paper is a sketch of this vision, taking into account pressures from changes in the U.S. health care system, the need for more objective information on which to base health care decisions, and the accelerating progress and clinical impact of genomics research. The lessons of modern genomics research demonstrate the power of computing and communication tools to facilitate rapid progress through the adoption of open community standards for information exchange and collaboration. While aspects of this vision are speculative, it seems clear that the core agenda for informatics must be the development of interoperating systems that can facilitate the secure gathering, interchange, and analysis of high-quality information and can gain leverage from worldwide collaboration in advancing and applying new medical knowledge.

Clinical Trials as Topic↗

Science and practice: a case for medical informatics as a local science of design.

Because scientific research is guided by concerns for uncovering "fundamental truths," its time frame differs from that of design, development, and practice, which are driven by immediate needs for practical solutions. In medicine, however, as in other disciplines, basic scientists, developers, and practitioners are being called on increasingly to forge new alliances and work toward common goals. The authors propose that medical informatics be construed as a local science of design. A local science seeks to explain aspects of a domain rather than derive a set of unifying principles. Design is concerned with the creation, implementation, and adaptation of artifacts in a range of settings. The authors explore the implications of this point of view and endeavor to characterize the nature of informatics research, the relationship between theory and practice, and issues of scientific validity and generalizability. They argue for a more pluralistic approach to medical informatics in building a cumulative body of knowledge.

Computer Systems↗

Integration and beyond: linking information from disparate sources and into workflow.

The vision of integrating information-from a variety of sources, into the way people work, to improve decisions and process-is one of the cornerstones of biomedical informatics. Thoughts on how this vision might be realized have evolved as improvements in information and communication technologies, together with discoveries in biomedical informatics, and have changed the art of the possible. This review identified three distinct generations of "integration" projects. First-generation projects create a database and use it for multiple purposes. Second-generation projects integrate by bringing information from various sources together through enterprise information architecture. Third-generation projects inter-relate disparate but accessible information sources to provide the appearance of integration. The review suggests that the ideas developed in the earlier generations have not been supplanted by ideas from subsequent generations. Instead, the ideas represent a continuum of progress along the three dimensions of workflow, structure, and extraction.

Computer Communication Networks↗

Review of computer-generated outpatient health behavior interventions: clinical encounters "in absentia".

OBJECTIVE: To evaluate evidence of the effectiveness of computer-generated health behavior interventions-clinical encounters "in absentia"-as extensions of face-to-face patient care in an ambulatory setting. DATA SOURCES: Systematic electronic database and manual searches of multiple sources (1996-1999) plus search for gray literature were conducted to identify clinical trials using computer-generated health behavior interventions to motivate individuals to adopt treatment regimens, focusing on patient-interactive interventions and use of health behavior models. STUDY SELECTION: Eligibility criteria included randomized controlled studies with some evidence of instrument reliability and validity; use of at least one patient-interactive targeted or tailored feedback, reminder, or educational intervention intended to influence or improve a stated health behavior; and an association between one intervention variable and a health behavior. DATA EXTRACTION: Studies were described by delivery device (print, automated telephone, computer, and mobile communication) and intervention type (personalized, targeted, and tailored). We employed qualitative methods to analyze the retrieval set and explore the issue of patient interactive computer-generated behavioral intervention systems. DATA SYNTHESIS: Studies varied widely in methodology, quality, subject number, and characteristics, measurement of effects and health behavior focus. Of 37 eligible trials, 34 (91.9 percent) reported either statistically significant or improved outcomes. Fourteen studies used targeted interventions; 23 used tailored. Of the 14 targeted intervention studies, 13 (92.9 percent) reported improved outcomes. Of the 23 tailored intervention studies, 21 (91.3 percent) reported improved outcomes. CONCLUSIONS: The literature indicates that computer-generated health behavior interventions are effective. While there is evidence that tailored interventions can more positively affect health behavior change than can targeted, personalized or generic interventions, there is little research comparing different tailoring protocols with one another. Only those studies using print and telephone devices reported a theoretic basis for their methodology. Future studies need to identify which models are best suited to which health behavior, whether certain delivery devices are more appropriate for different health behaviors, and how ambulatory care can benefit from patients' use of portable devices.

Ambulatory Care↗

Collaborative efforts for representing nursing concepts in computer-based systems: international perspectives.

Current nursing terminology efforts have converged toward meeting the demand for a reference terminology for nursing concepts by building on the foundation of existing interface and administrative terminologies and by collaborating with terminology efforts across the spectrum of health care. In this article, the authors illustrate how collaboration is promoting convergence toward a reference terminology for nursing by briefly summarizing a wide range of exemplary activities. These include: 1) the International Classification of Nursing Practice (ICNP) activities of the International Council of Nurses (ICN), 2) work in Brazil and Korea that has contributed to, and been stimulated by, ICNP developments, 3) efforts in the United States to improve understanding of the different types of terminologies needed in nursing and to promote harmonization and linking among them, and 4) current nursing participation in major multi-disciplinary standards initiatives. Although early nursing terminology work occurred primarily in isolation and resulted in some duplicative efforts, the activities summarized in this article demonstrate a tremendous level of collaboration and convergence not only in the discipline of nursing but in multi-disciplinary standards initiatives. These efforts are an important prerequisite for ensuring that nursing concepts are represented in computer-based systems in a manner that facilitates multi-purpose use at local, national, regional, and international levels.

Medical Informatics Applications↗

Can general practice provide useful information?--evaluation of a primary health care information project in northern England.

OBJECTIVE: To develop a computerised primary care information gathering network capable of producing reliable risk factor and morbidity data from a wide diversity of general practice software systems. METHOD: Fourteen practices from the Wakefield and Pontefract district collaborated in sharing information and solving technical difficulties associated with collecting data on coronary heart disease (CHD) risk factors, diabetes, and asthma. Practices also participated in rheumatology and mental health needs assessment projects. RESULTS: Data could be transferred by diskette in only five of the systems and paper reports had to be used to post process the data into a standard format. Not all data were complete or comparable. Crude estimates only of smoking prevalence and smoking cessation interventions were possible, as well as of age and sex specific prevalences for asthma and diabetes. The rheumatology health needs assessment, using the prospective collection of consultation based data, highlighted an unmet need for rheumatology services in the community. CONCLUSIONS: Although practices have been willing to devote considerable time and effort to the project, the diversity of software has precluded a simple methodology for data collection and analysis. The amount of useful information retrieved so far, has been limited but a number of important lessons have been learned which have implications for similar information projects and the use of primary care information in service planning.

Computer Communication Networks↗

Evaluating medical information systems: ethnomethodological and interactionist approaches.

This paper examines how qualitative research can contribute to the evaluation of medical information systems. Most qualitative studies of the use of medical computer systems adopt either an interactionist or, less commonly, an ethnomethodological perspective. The paper compares and contrasts the two approaches through the detailed discussion of two case studies, one rooted in each tradition. It identifies the implications of using these different analytical approaches and assesses their strengths and weaknessess. The paper argues that the preference for interactionism has led qualitative researchers to overlook important aspects of the social processess which surround the use of computer systems and that, consequently, a shift in emphasis towards ethnomethodological research is necessary. Nonetheless, it concludes by asserting that both strands of qualitative research can illuminate the organizational impact of medical computer systems.

Attitude of Health Personnel↗

Data-driven computer simulation of human cancer cell.

Using the Diagrammatic Cell Language trade mark, Gene Network Sciences (GNS) has created a network model of interconnected signal transduction pathways and gene expression networks that control human cell proliferation and apoptosis. It includes receptor activation and mitogenic signaling, initiation of cell cycle, and passage of checkpoints and apoptosis. Time-course experiments measuring mRNA abundance and protein activity are conducted on Caco-2 and HCT 116 colon cell lines. These data were used to constrain unknown regulatory interactions and kinetic parameters via sensitivity analysis and parameter optimization methods contained in the DigitalCell computer simulation platform. FACS, RNA knockdown, cell growth, and apoptosis data are also used to constrain the model and to identify unknown pathways, and cross talk between known pathways will also be discussed. Using the cell simulation, GNS tested the efficacy of various drug targets and performed validation experiments to test computer simulation predictions. The simulation is a powerful tool that can in principle incorporate patient-specific data on the DNA, RNA, and protein levels for assessing efficacy of therapeutics in specific patient populations and can greatly impact success of a given therapeutic strategy.

Apoptosis↗

Roundtable on bioterrorism detection: information system-based surveillance.

During the 2001 AMIA Annual Symposium, the Anesthesia, Critical Care, and Emergency Medicine Working Group hosted the Roundtable on Bioterrorism Detection. Sixty-four people attended the roundtable discussion, during which several researchers discussed public health surveillance systems designed to enhance early detection of bioterrorism events. These systems make secondary use of existing clinical, laboratory, paramedical, and pharmacy data or facilitate electronic case reporting by clinicians. This paper combines case reports of six existing systems with discussion of some common techniques and approaches. The purpose of the roundtable discussion was to foster communication among researchers and promote progress by 1) sharing information about systems, including origins, current capabilities, stages of deployment, and architectures; 2) sharing lessons learned during the development and implementation of systems; and 3) exploring cooperation projects, including the sharing of software and data. A mailing list server for these ongoing efforts may be found at http://bt.cirg.washington.edu.

Bioterrorism↗

Computer-generated patient education materials: do they affect professional practice? A systematic review.

A systematic search of seven electronic databases was done to identify randomized controlled trials that assessed the effect of computer-generated patient education material (PEM) on professional practice. Three studies met the authors' criteria. All three studies involved preventive care. All used a complex intervention of which computer-generated PEM was a major component. Improvements in practice were seen in all studies, although these gains were generally modest. One study showed improvement in patient outcomes. Mann-Whitney statistics calculated for the studies' outcome measures ranged from 0.48 to 0.66, equivalent to risk differences of -4 to 32 percent. Computer-generated PEM seems to have a small, positive effect on professional practice. The small number of included studies and the complex nature of the interventions makes it difficult to draw conclusions about the ability of computer-generated PEM to change professional practice. Future work should involve well-defined interventions that can be clearly evaluated in terms of effect and cost.

Humans↗