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Data sharing in nursing research: advantages and challenges.

The sharing of data between investigators has received little attention in the nursing literature. Among other advantages, data sharing reinforces open scientific inquiry, encourages the development of multiple perspectives, and reduces respondent burden. However, ownership and control of the shared data, preservation of respondents' anonymity, and the costs of data sharing are among the issues that need to be addressed in agreements and contracts involving primary investigators, secondary investigators, and data repositories. The original researcher must spend time and energy to make data sharing possible. It is only when such efforts are acknowledged and rewarded that data sharing is likely to become a norm in the nursing profession. The authors argue that research data should be shared and nurse researchers should seek to have data from all publicly funded projects deposited in accessible data repositories. Nurse researchers need to incorporate plans for data sharing into their research programs and press for the infrastructures required to enable data sharing.

Authorship↗

[Experimental study of the new medicinal form of the antiviral preparation fluorenal].

Repository forms of a 0.1% fluorenal solution prepared with buffered polyglucin and a 1% polyacryamide were found to be curatively effective in experimental herpetic keratitis in rabbits. When stored in small tube-droppers for not less than 12 months (observation time) the repository fluorenal eye drops retain their therapeutic activity. In its new presentation the drug is highly effective, stable and convenient in use. This medicinal preparation of fluorenal permits reduce its concentration and the number of instillations.

Acrylamides↗

Using intermediate states to improve the ability of the Arden Syntax to implement care plans and reuse knowledge.

The Arden Syntax is one of a few knowledge representation languages currently in use for clinical decision support. While some of these languages are being used in active patient care settings, none have gained widespread acceptance as a clinical tool. Prior attempts to represent temporally complex care plans in the Arden Syntax have revealed difficulties in representing and tracking series of consecutive time-oriented events and recommendations, in sharing and reusing knowledge and in dealing with unobtainable data. In an attempt to improve Arden's ability to deal with these problems and demonstrate the importance of these factors, the clinical event monitor has been adapted to store coded data representing Intermediate States in the Columbia Presbyterian Medical Center (CPMC) central data repository. The Intermediate States define the current state of the patient as laid out in the care plan. Four care plans were constructed. The findings include an improved ability to track complex series of events and recommendations over long periods of time. The knowledge generated by the electronic care plans was able to be reused by the care plan that generated it, by other elements of the knowledge base and by non-decision support applications. Modular development, facilitated by the changes, simplified dealing with data not available to the central data repository by aiding the implementation of those parts of the care plan for which sufficient data is available.

Artificial Intelligence↗

The registration function as a critical dependency in a lifetime clinical record (LCR).

Over the past two years, we have successfully migrated the Regenstrief Clinical Information System into our hospital. Integral to this process was the need to develop interfaces and processes supporting movements of patient identification data between the existing clinical management system (Unity, SMS) and Carebase (RCIS). Critical to the implementation of Carebase was the development of an interface between Carebase and the registration system based upon a unique medical record number. Even more critical was the development of stable processes that supported the accurate patient identification and assignment of medical record numbers. The medical record number at our institution is assigned or verified at the time of registration. Major problems occurred when patients presented during system down-times and existing medical record numbers could not be accessed, resulting in multiple registrations and medical record numbers for the same patient. This resulted in data fragmentation and required merging at a later date. Other more serious problems resulted from the assignment of the same medical record number to separate patients and with the mixing of data from multiple patients into one patient record. This was largely due to the failure of clerical personnel to appropriately identify patients at the time of registration, or multiple patients sharing identification documents, a common problem in our geographic area. Given that clinical data was to be maintained and added to the repository for several decades, errors such as these in registration would prove catastrophic. The interfaces between the various clinical systems that pass data to Carebase are all HL-standard and largely prevent data passage if registration data is inaccurate. During the early stages of implementation, approximately 300 exceptions per day were generated from clinical systems attempting to pass data to the repository. Following re¿engineering of the registration process, education of clerical personnel, and analysis of exception type, the number of exceptions due to faulty registration data fell to less than one per week. To achieve improvement in exception volume, several innovative measures were undertaken. Firstly, down-time procedures were changed to require query of the LCR for existing registration data. The LCR was maintained on a separate platform that experienced essentially no down-time and was available for this purpose. This largely eliminated the need for the use of "down-time numbers" or medical record numbers that could be temporarily assigned to patients registered when the registration system was unavailable (data would subsequently be merged into existing patient records if the patient was found to be currently in the system). If the patient was not in the LCR, then a permanent number was assigned in sequence. A registration dataset was developed and encoded onto a magnetic card (Carecard, Eltrax) and carried by patients. This enabled the rapid verification of registration data on subsequent visits to the parent institution or affiliated clinical sites. The issue of fraudulent use of the card and encoded registration dataset, however, remained problematic. Currently, a new imaging system is being installed that will soon enable the inclusion of a photograph of the patient as a component of the registration dataset. Perhaps the most significant change in the registration process involved the education of central registration and admitting personnel. An educational program was developed that reinforced the need for accuracy in collecting registration data, identifying patients, and assigning medical record numbers; more importantly, it stressed the linkage of the registration function and patient care. Lastly, an aggressive approach to monitoring exceptions resulting from errors in registration was developed. A near real-time process for identifying errors in registrations allowed for rapid intervention and feedback to involved de

Medical Records Systems, Computerized↗

Survey of the hemagglutinin (HA) cleavage site sequence of H5 and H7 avian influenza viruses: amino acid sequence at the HA cleavage site as a marker of pathogenicity potential.

The deduced amino acid sequence at the hemagglutinin (HA) cleavage site of 76 avian influenza (AI) viruses, subtypes H5 and H7, was determined by reverse transcription-polymerase chain reaction and cycle sequencing techniques to assess pathogenicity. Eighteen of the 76 viruses were isolated in 1993 and 1994 from various sources in the United States. In addition, 34 H5 (4 highly pathogenic [HP] and 30 non-highly pathogenic [non-HP]) and 24 H7 (3 HP and 21 non-HP) repository viruses, isolated between 1927 and 1992, were sequenced and the sequences compared to those in recent isolates. All repository HP H5 and H7 viruses studied had multiple basic amino acids adjacent to the HA cleavage site and most had basic amino acids in excess of the proposed minimum motif B-X-B-R (B = basic amino acids arginine or lysine, X = nonbasic amino acid, R = arginine) that has been associated with high pathogenicity. Of the non-HP viruses studied, 35 of 38 for H5 and 30 of 31 for H7 conformed to the motif B-X-X-R and B-X-R, respectively. Two non-HP H5 viruses had the motif X-X-X-R at the cleavage site and a third had the motif B-X-X-K (K = basic amino acid lysine). One non-HP H7 (A/Pekin robin/CA/30412-5/94) had four basic amino acids (K-R-R-R) adjacent to the cleavage site. Although the Pekin robin isolate did not produce disease in chickens under the conditions of the study it did have the amino acid sequence compatible with that in HP AI viruses and, therefore, is considered potentially HP. This is the first account of an H7 virus that is non-HP in chickens but meets the molecular criterion to be classified as HP.

Amino Acid Sequence↗

Inter-rater reliability and review of the VA unresolved narratives.

To better understand how VA clinicians use medical vocabulary in every day practice, we set out to characterize terms generated in the Problem List module of the VA's DHCP system that were not mapped to terms in the controlled-vocabulary lexicon of DHCP. When entered terms fail to match those in the lexicon, a note is sent to a central repository. When our study started, the volume in that repository had reached 16,783 terms. We wished to characterize the potential reasons why these terms failed to match terms in the lexicon. After examining two small samples of randomly selected terms, we used group consensus to develop a set of rating criteria and a rating form. To be sure that the results of multiple reviewers could be confidently compared, we analyzed the inter-rater agreement of our rating process. Two rates used this form to rate the same 400 terms. We found that modifiers and numeric data were common and consistent reasons for failure to match, while others such as use of synonyms and absence of the concept from the lexicon were common but less consistently selected.

Medical Records Systems, Computerized↗

Evolution of a legacy system to a Web patient record server: leveraging investment while opening the system.

A layered system is under development to enhance our legacy system as a backend in a WEB-enabled system. Each layer of the system has defined functionality, leverages the investment in the layer below, and follows the strategy of reducing support requirements for workstations. The mainframe system provides administrative integration of sub-systems, security, and the central data repository for most information. The second layer is a graphical user interface (GUI) to the system for Windows platforms. Support needs are limited by relying chiefly on X-terminals and application servers. The "Intranet" layer is a WEB Server building upon the second layer gateways to provide platform-independent access to selected information and images. The fourth layer, under evaluation, will extend access to the central data repository for Internet users of web browsers that support private-key/public-key encryption.

Computer Communication Networks↗

Adding semantics to genome databases: towards an ontology for molecular biology.

Molecular biology has a communication problem. There are many databases using their own labels and categories for storing data objects and some using identical labels and categories but with a different meaning. Conversely, one concept is often found under different names. Prominent examples are the concepts "gene" and "protein sequence" which are used with different semantics by major international genomic and protein databases thereby making database integration difficult and strenuous. This situation can only be improved by either defining individual semantic interfaces between each pair of databases (complexity of order n2) or by implementing one agreeable, transparent and computationally tractable semantic repository and linking each database to it (complexity of order n). Ontologies are one means to provide such semantic repository by explicitly specifying the meaning of and relation between the fundamental concepts in an application domain. Here, heuristics for building an ontology and the upper level and a database branch of a prospective Ontology for Molecular Biology are presented and compared to other ontologies with respect to suitability for molecular biology (http:/(/)igd.rz-berlin.mpg.de/www/oe/mbo.html).

Computational Biology↗

Use of relational database management system by clinicians to create automated MICU progress note from existent data sources.

We designed and built an application called MD Assist that compiles data from several hospital databases to create reports used for daily house officer rounding in the medical intensive care unit (MICU). After rounding, the report becomes the objective portion of the daily "SOAP" MICU progress note. All data used in the automated note was available in digital format residing in an institution wide Sybase data repository which had been built to fulfill data needs of the parent enterprise. From initial design of target output through actual creation and implementation in the MICU, MD Assist was created by physicians with only consultative help from information systems (IS). This project demonstrated a method for rapidly developing time saving, clinically useful applications using a comprehensive clinical data repository.

Database Management Systems↗

A NIDSEC primer: Part 2--Setting the standards.

The Nursing Information and Data Set Evaluation Center (NIDSEC), established by the American Nurses Association (ANA), recently published the criteria by which it evaluates information systems that support nursing practice documentation. These criteria include nomenclature, clinical content, clinical data repository and general system characteristics. This article focuses on two of the four dimensions of nursing data sets and the systems that contain them: clinical data repository and general system characteristics.

American Nurses' Association↗

"Virtual" clinical trials: case control experiments utilizing a health services research workstation.

We created an interface to a growing repository of clinical and administrative information to facilitate the design and execution of case-control experiments. The system enables knowledgeable users to generate and test hypotheses regarding associations among diseases and outcomes. The intuitive interface allows the user to specify criteria for selecting cases and defining putative risks. The repository contains comprehensive administrative and selected clinical information on all ambulatory and emergency department visits as well as hospital admissions since 1994. We tested the workstation's ability to determine relationships between outpatient diagnoses including hypertension, osteoarthritis and hypercholesterolemia with the occurrence of admissions for stroke and myocardial infarction and achieved results consistent with published studies. Successful implementation of this Health Services Research Workstation will allow "virtual" clinical trials to validate the results of formal clinical trials on a local population and may provide meaningful analyses of data when formal clinical trials are not feasible.

Case-Control Studies↗

Integration of DICOM images into an electronic medical record using thin viewing clients.

Over the past five years the University of Washington has created a clinical data repository. This repository combines in a distributed relational database information from multiple departmental databases (MIND). MINDscape provides a platform independent, web browser view of the MIND dataset that can easily be linked to other information resources on the network.

Computer Security↗

Essential tremor associated with focal nonnigral Lewy bodies: a clinicopathologic study.

BACKGROUND: Essential tremor is one of the most common neurological diseases. Its links with Parkinson disease (PD) are often debated. There have been few published postmortem studies. OBJECTIVE: To study our first case of essential tremor through the recently established Essential Tremor Centralized Brain Repository. DESIGN: Report of a case of a patient with a diagnosis of severe essential tremor for 46 years who exhibited no signs of parkinsonism. RESULTS: On postmortem examination, gross brain sections showed no abnormalities. Results of microscopic examination of hematoxylin-eosin-stained sections revealed that the locus coeruleus contained multiple Lewy bodies (LBs), although none were found in the substantia nigra, dorsal vagal nuclei, thalamus, substantia innominata, inferior olivary nucleus, or cerebellum. Immunochemical staining using antibodies directed against alpha-synuclein confirmed the presence of many LBs in the locus ceruleus and showed rare LBs in the substantia innominata and dorsal vagal nuclei. There were no LBs in the substantia nigra. CONCLUSIONS: Our patient had a very focal presence of LBs in the locus ceruleus, an anatomically restricted form of LB disease. This study provides support for the link between essential tremor and LB disease and raises the question as to what proportion of patients with essential tremor might have unusual forms of LB disease.

Aged↗

The malignant course of "benign hallucinations" in Parkinson disease.

OBJECTIVE: To monitor progression of "benign hallucinations" in Parkinson disease (PD). METHODS: We searched our data repository for subjects with PD with 3 sets of neuropsychological testing during 3 years and Unified Parkinson's Disease Rating Scale thought disorder scores taken at 4- to 12-month intervals during this period. We found 48 patients with benign hallucinations, defined as a thought disorder score of 2 (benign hallucinations, insight retained), receiving no treatment for hallucinations. We followed up thought disorder scores under best medical management for at least 3 years or until a thought disorder score of 3 (loss of insight) or 4 (delusions) occurred. In subjects whose thought disorder scores remained at 2, we assessed neuroleptic use and decreases in PD medications to abate hallucinations. RESULTS: Most subjects (81%) progressed to thought disorder scores of 3 or 4. In 7 (78%) of 9 subjects who retained a thought disorder score of 2, PD medications were reduced to treat hallucinations, and 3 subjects (33%) also received neuroleptics. If the composite end point (any of the criteria) was used, 96% of subjects progressed, with only 2 subjects continuing with stable, untreated benign hallucinations. CONCLUSIONS: Because hallucinations progress, the concept of benign hallucinations is prognostically misleading. Though hallucinations with retained insight may be "benign" for the moment, they portend serious consequences. The term benign hallucinations of PD should be considered generally unsound and dropped from operative vocabulary.

Aged↗

Müller cell cone, an overlooked part of the anatomy of the fovea centralis: hypotheses concerning its role in the pathogenesis of macular hole and foveomacualr retinoschisis.

Poorly recognized by anatomists and pathologists is the cone-shaped zone of Müller cells that composes the central and inner part of the fovea centralis. The importance of these cells in the structural integrity of the macula, as a repository for xanthophyll, and in the pathogenesis of macular diseases, particularly regarding idiopathic macular hole and foveomacular schisis, is hypothesized.

Female↗

Influence of the news media on diagnostic testing in the emergency department.

OBJECTIVE: To examine the association between mass media attention regarding invasive group A streptococcal (GAS) disease and testing for GAS in a pediatric emergency department (ED). DESIGN, SETTING, AND PARTICIPANTS: An observational analysis was performed of patients who had GAS tests done in a pediatric ED between December 1, 1999, and November 30, 2001. Data were analyzed by dividing each of the 2 years into 4 consecutive 90-day intervals. Data including age, date of the visit, presenting complaint, primary discharge diagnosis, whether a GAS test was obtained, and the results were collected from an electronic data repository. The date of the news stories, the station, and the duration of the broadcast were collected from electronic archives of the local newspaper and a broadcast monitoring service. MAIN OUTCOME MEASURE: The rate of GAS tests done per 1000 ED visits and the rate of positive tests per 1000 ED visits. RESULTS: An average of 103 GAS tests were performed per 1000 ED visits in the December through February period in year 2 compared with 55 GAS tests per 1000 ED visits in a similar period in year 1. This difference was statistically significant (difference, 48 tests; 95% confidence interval, 24-72 tests; P<.001). There were no significant differences in the proportion of positive tests (32% in year 1 vs 20% in year 2; mean difference, -11%; 95% confidence interval, -23% to 1%; P =.07). There were a total of 16 newspaper articles and 34 television stories on GAS during the 2-year study period. The peak in GAS tests and the peak in media events were concomitant. CONCLUSION: A surge in news stories regarding GAS disease was associated with an increase in testing for GAS in a pediatric ED.

Child↗

Effect of a standardized pharyngitis treatment protocol on use of antibiotics in a pediatric emergency department.

BACKGROUND: Pharyngitis is a common complaint in pediatric patients. If clinical parameters are used alone, bacterial pathogens will be wrongly implicated in many cases. A nonstandardized approach to the treatment of children with pharyngitis in an emergency department setting may lead to inappropriate empirical therapy, contribute to increased bacterial resistance, and result in adverse events related to the treatment provided. OBJECTIVE: To implement evidence-based guidelines for the diagnosis and treatment of children with pharyngitis in an emergency department setting and thereby influence practices of prescribing antibiotics. DESIGN AND METHODS: An evidence-based guideline for the evaluation and treatment of patients with pharyngitis was developed and implemented in our emergency department. Preintervention and postintervention patient cohorts were identified by a search of the emergency department's clinical repository. A medical record review was performed using a standardized data abstraction form (history and examination data, diagnostic testing, and therapy provided). Treatment decisions were judged as appropriate if the diagnosis of pharyngitis caused by group A beta-hemolytic streptococci was based on confirmatory microbiological testing rather than on the history and physical examination findings alone. RESULTS: We included 443 patients for study (219 preintervention and 224 postintervention). In the preintervention group, 97 (44%) of 214 received appropriate treatment. In the postintervention group, 204 (91%) of 224 received appropriate treatment. CONCLUSION: An evidence-based clinical guideline can influence and improve practices of prescribing antibiotics by pediatric emergency physicians in a teaching hospital setting.

Adolescent↗

Multiple sclerosis and Epstein-Barr virus.

CONTEXT: Infection with Epstein-Barr virus (EBV) has been associated with an increased risk of multiple sclerosis (MS), but the temporal relationship remains unclear. OBJECTIVE: To determine whether antibodies to EBV are elevated before the onset of MS. DESIGN, SETTING, AND POPULATION: Nested case-control study conducted among more than 3 million US military personnel with blood samples collected between 1988 and 2000 and stored in the Department of Defense Serum Repository. Cases were identified as individuals granted temporary or permanent disability because of MS. For each case (n = 83), 2 controls matched by age, sex, race/ethnicity, and dates of blood sample collection were selected. MAIN OUTCOME MEASURES: Antibodies including IgA against EBV viral capsid antigen (VCA) and IgG against VCA, nuclear antigens (EBNA complex, EBNA-1, and EBNA-2), diffuse and restricted early antigens, and cytomegalovirus. RESULTS: The average time between blood collection and MS onset was 4 years. The strongest predictors of MS were serum levels of IgG antibodies to VCA or EBNA complex. The risk of MS increased monotonically with these antibody titers; relative risk (RR) in persons in the highest category of VCA (> or =2560) compared with those in the lowest (< or =160) was 19.7 (95% confidence interval [CI], 2.2-174; P for trend =.004). For EBNA complex titers, the RR for those in the highest category (> or =1280) was 33.9 (95% CI, 4.1-283; P for trend <.001) vs those in the lowest category (< or =40). Similarly strong positive associations between EBV antibodies and risk of MS were already present in samples collected 5 or more years before MS onset. No association was found between cytomegalovirus antibodies and MS. CONCLUSION: These results suggest a relationship between EBV infection and development of MS.

Adolescent↗