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PubMed1980

Obtaining access to data sources: an exploration of method, problems and possible solutions.

A method, route and problems relating to the gaining of access to research data or respondents is discussed. In seeking permission to gather data from patients and staff in Scottish psychiatric hospitals, using Flanagan's Critical Incident Technique, a number of problems were encountered, viz. (i) the varying admnistrative levels to which the first formal request for entry had to be made; (ii) the varying routes which had to be followed in order to gain permission, and (iii) the time taken to obtain access to data sources. The problems, their possible consequences, and a number of long and short term recommendations are made. If implemented, these may go some way toward minimizing the difficulties associated with gaining access to data sources. The long term recommendations, including improved nurse representation on existing research and ethical committees, are directed to those who shape and influence policies relating to research practice generally. The short term recommendations are directed to the nurse researcher who is seeking access to field sites, with a view to minimizing problems relating to this aspect of planning and carrying out research activity.

Confidentiality↗

PubMed2003

Costs of rheumatoid arthritis in Germany: a micro-costing approach based on healthcare payer's data sources.

OBJECTIVE: To develop a systematic set of German cost data in rheumatoid arthritis (RA) based solely on valid healthcare payer's cost data sources. METHODS: Retrospectively one year cost data of 338 patients with RA were generated and analysed. The cost data were derived from a major statutory health insurance plan ("Allgemeine Ortskrankenkasse Niedersachsen") and the regional physicians' association ("Kassenärztliche Vereinigung Niedersachsen"). The recently published matrix of cost domains in RA was applied to structure the analysis. Descriptive statistics were used to analyse the data. RESULTS: The total direct costs for the 338 patients during one year (third quarter 2000 to second quarter 2001) were euro 3815 per patient-year. RA related direct costs were euro 2312 per patient-year. Outpatient costs accounted for 73.7%, inpatient costs for 24.0%, and other disease related costs for 2.3% of RA related direct costs. Outpatients cost drivers were RA related drugs (euro 1019 per patient-year), physician visits (euro 323 per patient-year), diagnostic and therapeutic procedures and tests (euro 185 per patient-year), and devices and aids (euro;168 per patient-year). 98 patients were retired prematurely owing to RA related work disability and incurred costs of euro;8358 per retired patient-year. 96 patients were gainfully employed and incurred sick leave costs of euro 2835 per employed patient-year. CONCLUSION: Micro-costing based on healthcare payer's data provides a relatively conservative albeit highly accurate estimate of costs in RA. Both RA related and non-RA related costs must be taken into account. In gainfully employed patients and in patients who receive RA related retirement payments productivity costs exceed direct costs.

Adult↗

PubMed2001

Availability of child care in the United States: a description and analysis of data sources.

Lack of high-quality, affordable, and accessible child care is an often-cited impediment to a manageable balance between work and family. Researchers, however, have been restricted by a scarcity of data on the availability of child care across all U.S. communities. In this paper we describe and evaluate several indicators of child care availability that have been released by the U.S. Census Bureau over the last 15 years. Using community- and individual-level analyses, we find that these data sources are useful for indicating child care availability within communities, even though they were collected for other purposes. Furthermore, our results generally suggest that the data on child care availability are equally valid across communities of different urbanicity and average income levels, although it appears that larger geographic areas more accurately capture the child care market of centers than that of family day care providers. Our analyses indicate that center child care is least available in nonmetropolitan, poor communities, and that family day care is most available in nonmetropolitan, mixed-income communities. We discuss the benefits and limitations of the data sources, and point to directions for future data developments and research.

Child↗

PubMed2000

National data sources on the care and outcomes of patients with community acquired pneumonia.

Despite improved understanding and treatment of community acquired pneumonia (CAP), variations in clinical practice and patient outcomes still exists, resulting in excess healthcare dollars spent and decreased patient satisfaction. The use of treatment and outcomes research data can help providers improve their methods and standardize techniques to control costs and provide the best care for their patients. To better understand the utility and capabilities of this research, this article will compare several administrative and clinical databases. Two, data sources in particular, the EPI-Q Inc. CAP-Compare database and the University HealthSystem Consortium's (UHC) CAP Benchmarking Program contain clinical and utilization data specific to CAP. In addition there are several government and non-government sponsored data sources that include administrative data on many diagnosis including CAP. These include: Healthcare Benchmarking Systems International's EXPLORE database, the Center for Healthcare Industry Performance Studies database, the National Center for Health Statistics'--National Hospital Discharge Survey, and the Medicare Provider Analysis and Review data files.

Benchmarking↗

PubMedDate not supplied

An assessment of potential injury surveillance data sources in Alaska using an emerging problem: all-terrain vehicle-associated injuries.

Using injuries associated with three-wheeled all-terrain vehicles in Alaska as an example, the existing injury data bases were assessed for usefulness, cost, simplicity, acceptability, flexibility, sensitivity, specificity, representativeness, and timeliness. In this study strengths and weaknesses of existing data for all-terrain vehicles were identified and ways to improve data collection and linkages across data systems are suggested. Based on this evaluation, linked death certificates and medical examiner data provide an excellent mechanism for monitoring vehicle-related fatalities. Information sources for nonfatal and nonvehicle-related injuries require further development. Police records provide supplemental information, but they are limited to the events reported to police. Although other sources were explored, they added no advantage to the primary sources. Data processing, analysis, and dissemination--traditional responsibilities for public health and other governmental agencies--can transform these data sources into meaningful mechanisms to define injury trends and monitor injury-specific intervention strategies.

Alaska↗

PubMed2005

Prior information in behavioral capture-recapture methods: demographic influences on drug injectors' propensity to be listed in data sources and their drug-related mortality.

The authors present findings from a Bayesian analysis of Scotland's four primary capture-recapture data sources for 2000 that was carried out to estimate numbers of current injecting drug users by region (Greater Glasgow vs. elsewhere in Scotland), sex (male vs. female), and age group (15-34 years vs. > or =35 years). A secondary goal of the analysis was to obtain Bayesian estimates and credible intervals for the demographic influences on Scotland's drug-related death rate per 100 current injectors. Incorporation of informative priors altered the models with highest posterior probability. Expert opinion on how demography influenced Scottish drug injectors' propensity to be listed in different data sources was taken into account, along with external information about European injectors' drug-related death rates and male:female ratios. Higher drug-related mortality was confirmed in older drug injectors and those outside of Greater Glasgow. Female injectors' lower drug-related death rate was not sustained beyond 34 years of age. The authors recommend that demographic influences be accommodated in behavioral capture-recapture estimation, especially when it is a prelude to secondary analysis, such as the analysis of drug-related death rates presented here.

Adolescent↗

PubMed1999

Cancer occurrence in the elderly: agreement between three major data sources.

PURPOSE: To explore agreement on cancer occurrence and site among Medicare Part A, Massachusetts Cancer Registry, and death certificates. METHODS: We linked these data sources with the cohort of the population-based East Boston Senior Health Project, a component of the National Institute on Aging's Established Populations for Epidemiologic Studies of the Elderly. The cohort consists of 905 subjects dying between January 1986 and December 1990. RESULTS: We detected the following agreements on cancer occurrence: hospitalization data and death certificates (kappa = 0.70), hospitalization and cancer registry data (kappa = 0.59), and cancer registry and death certificate data (kappa = 0.50). Measures of agreement changed little when the analyses were stratified by age, sex, calendar year and place of death, autopsy performance, cigarette smoking or alcohol consumption. Site-specific agreements were higher for colorectal and respiratory tract cancer compared to breast and prostate across all three comparisons. CONCLUSIONS: The results should assist epidemiologists to better understand the strengths and limitations of these data sources.

Aged↗

PubMed1999

Differences in morbidity measures and risk factor identification using multiple data sources: the case of stroke.

BACKGROUND: Epidemiologic studies utilise medical information from a variety of sources. These include subject or proxy interviews, medical records, death certificates and administrative records. Since the choice of data source may affect the validity of study results, it is important to understand the effect of different case-ascertainment methodologies on estimates of risk. METHODS: The NHANES I Epidemiologic Follow-up Study (NHEFS) contains several sources of information that can be used to define case status. In this report we investigate whether the use of seven different algorithms for case ascertainment, each based on different combinations of data sources, results in substantive differences in the estimates of incidence rates and relative risks associated with selected, documented, risk factors for stroke. RESULTS: The seven different models of case identification gave very different estimates of stroke incidence. However, the characteristics of the cases defined by the models, except for cases identified by death certificate only, were remarkably similar. There was also remarkable similarity in relative risks obtained from six of the seven models. The model using only death certificate information generally produced higher relative risk estimates. CONCLUSIONS: Despite wide variations in the estimates of incidence, characteristics of the cases using different case definition were remarkably similar, as were the risks associated with stroke incidence. The main difference occurred when cases were identified from the death certificate only. These results furnish some evidence that analyses based on self report can provide valid, useful information.

Adult↗

PubMed2006

The Gaggle: an open-source software system for integrating bioinformatics software and data sources.

BACKGROUND: Systems biologists work with many kinds of data, from many different sources, using a variety of software tools. Each of these tools typically excels at one type of analysis, such as of microarrays, of metabolic networks and of predicted protein structure. A crucial challenge is to combine the capabilities of these (and other forthcoming) data resources and tools to create a data exploration and analysis environment that does justice to the variety and complexity of systems biology data sets. A solution to this problem should recognize that data types, formats and software in this high throughput age of biology are constantly changing. RESULTS: In this paper we describe the Gaggle -a simple, open-source Java software environment that helps to solve the problem of software and database integration. Guided by the classic software engineering strategy of separation of concerns and a policy of semantic flexibility, it integrates existing popular programs and web resources into a user-friendly, easily-extended environment. We demonstrate that four simple data types (names, matrices, networks, and associative arrays) are sufficient to bring together diverse databases and software. We highlight some capabilities of the Gaggle with an exploration of Helicobacter pylori pathogenesis genes, in which we identify a putative ricin-like protein -a discovery made possible by simultaneous data exploration using a wide range of publicly available data and a variety of popular bioinformatics software tools. CONCLUSION: We have integrated diverse databases (for example, KEGG, BioCyc, String) and software (Cytoscape, DataMatrixViewer, R statistical environment, and TIGR Microarray Expression Viewer). Through this loose coupling of diverse software and databases the Gaggle enables simultaneous exploration of experimental data (mRNA and protein abundance, protein-protein and protein-DNA interactions), functional associations (operon, chromosomal proximity, phylogenetic pattern), metabolic pathways (KEGG) and Pubmed abstracts (STRING web resource), creating an exploratory environment useful to 'web browser and spreadsheet biologists', to statistically savvy computational biologists, and those in between. The Gaggle uses Java RMI and Java Web Start technologies and can be found at http://gaggle.systemsbiology.net.

Computational Biology↗

PubMed2006

A framework of integrating gene relations from heterogeneous data sources: an experiment on Arabidopsis thaliana.

One of the most important goals of biological investigation is to uncover gene functional relations. In this study we propose a framework for extraction and integration of gene functional relations from diverse biological data sources, including gene expression data, biological literature and genomic sequence information. We introduce a two-layered Bayesian network approach to integrate relations from multiple sources into a genome-wide functional network. An experimental study was conducted on a test-bed of Arabidopsis thaliana. Evaluation of the integrated network demonstrated that relation integration could improve the reliability of relations by combining evidence from different data sources. Domain expert judgments on the gene functional clusters in the network confirmed the validity of our approach for relation integration and network inference.

Arabidopsis↗

PubMed2004

Which data source in clinical performance assessment? A pilot study comparing self-recording with patient records and observation.

OBJECTIVE: A pilot study aimed to determine the extent to which each of three data sources could provide complete and reliable data for valid assessment of clinical performance. DESIGN: Clinical decisions taken in 168 consultations by seven family physicians were reviewed against guidelines for 15 clinical conditions. In total, 206 criteria were reviewed using three sources: medical records, observation in surgery, and structured self-recording by the physicians. SETTING AND PARTICIPANTS: Seven family practices in the Netherlands. MAIN MEASURE: Scores (%) of data recorded/total were obtained for each method. Kappa scores for the agreement between the three data sources were also obtained. RESULTS: Medical record examination provided 40%, observation 72%, and physician self-recording 95% of the data required for the review against guidelines. Nine per cent of the clinical decisions could be reviewed when using medical records, 46% when using observation data, and 69% when using data from prospective self-recording. In particular, decisions in the area of patient education and diagnostic examinations could not be reviewed validly using medical records only. Kappa agreements between the data available from the three sources as well as between the review results appeared to be 0.79. CONCLUSIONS: Medical records alone only supply sufficient information for the review of a very limited set of clinical decisions. Physician self-recording has significantly more potential for valid review of a broad range of clinical decisions. Furthermore, self-recording seems a reliable data collection method that deserves further research.

Clinical Competence↗

PubMed1992

CD-ROM source data uploaded to the operating and storage devices of an IBM 3090 mainframe through a PC terminal.

A powerful method of processing MEDLINE and CINAHL source data uploaded to the IBM 3090 mainframe computer through an IBM/PC is described. Data are first downloaded from the CD-ROM's PC devices to floppy disks. These disks then are uploaded to the mainframe computer through an IBM/PC equipped with WordPerfect text editor and computer network connection (SONNGATE). Before downloading, keywords specifying the information to be accessed are typed at the FIND prompt of the CD-ROM station. The resulting abstracts are downloaded into a file called DOWNLOAD.DOC. The floppy disks containing the information are simply carried to an IBM/PC which has a terminal emulation (TELNET) connection to the university-wide computer network (SONNET) at the Ohio State University Academic Computing Services (OSU ACS). The WordPerfect (5.1) processes and saves the text into DOS format. Using the File Transfer Protocol (FTP, 130,000 bytes/s) of SONNET, the entire text containing the information obtained through the MEDLINE and CINAHL search is transferred to the remote mainframe computer for further processing. At this point, abstracts in the specified area are ready for immediate access and multiple retrieval by any PC having network switch or dial-in connection after the USER ID, PASSWORD and ACCOUNT NUMBER are specified by the user. The system provides the user an on-line, very powerful and quick method of searching for words specifying: diseases, agents, experimental methods, animals, authors, and journals in the research area downloaded. The user can also copy the TItles, AUthors and SOurce with optional parts of abstracts into papers under edition. This arrangement serves the special demands of a research laboratory by handling MEDLINE and CINAHL source data resulting after a search is performed with keywords specified for ongoing projects. Since the Ohio State University has a centrally founded mainframe system, the data upload, storage and mainframe operations are free.

CD-ROM↗

PubMed1995

Fatal farm injuries: a five-year study utilizing a unique surveillance approach to investigate the concordance of reporting between two data sources.

The agricultural industry has been ranked among the most hazardous. Yet, it has been alleged that occupational injuries and fatalities are seriously underreported. Access to quality agricultural injury data poses a special problem. The purpose of this study was to investigate the concordance of reporting of fatal agricultural injuries between death certificate data and the Newspaper Clipping Service data in the state of Minnesota, utilizing a surveillance system developed by the University of Minnesota. Between September 1, 1981, and August 31, 1986, a total of 350 agricultural fatalities were identified in Minnesota; 82% were identified through death certificate data and 67% through the Newspaper Clipping Service. Differences in reporting between the two data sources were noted for gender, age, injury type, anatomical site, source, mechanism of injury, and multiple versus single injury. If only death certificates had been utilized, 18% of the fatalities would have been missed. Although it is apparent that death certificate data have an advantage over the Newspaper Clipping Service data for fatality reporting of specific variables, this study revealed that death certificate surveillance alone will miss mortality data and detection of certain potential risk factors. Suggestions for improving surveillance of agricultural fatalities are identified. However, until relevant changes are made, it will be essential to use a combination of data sources that include the Newspaper Clipping Service to identify agricultural injury fatalities accurately.

Accidents, Occupational↗

PubMed1992

Value of Food and Agriculture Organization data on food-balance sheets as a data source for dietary fat intake in epidemiologic studies.

The relationships between the per person supply (expressed as percent of total energy supply) of saturated fatty acids (SFAs), monounsaturated fatty acids (MUFAs), and polyunsaturated fatty acids (PUFAs) obtained from 1979-1981 Food and Agriculture Organization (FAO) data, and the per person intake obtained from 52 individual dietary surveys performed in 19 countries, were examined. In particular, the ratio of PUFAs to SFAs (P:S) and the ratio of unsaturated fatty acids (MUFAs and PUFAs) to SFAs (U:S) obtained from both data sources were examined. Significant correlations (P less than 0.001) were found between the two data sources for the P:S, U:S, SFAs, and MUFAs and PUFAs (P less than 0.02) in 19 countries. It is concluded that the data on fat intake from the FAO are valid for use in epidemiologic studies. In view of the variability of the data, it is recommended to use them either expressed as percentage of energy or as ratios of the different components.

Diet Surveys↗

PubMed2004

Probabilistic inference of molecular networks from noisy data sources.

Information on molecular networks, such as networks of interacting proteins, comes from diverse sources that contain remarkable differences in distribution and quantity of errors. Here, we introduce a probabilistic model useful for predicting protein interactions from heterogeneous data sources. The model describes stochastic generation of protein-protein interaction networks with real-world properties, as well as generation of two heterogeneous sources of protein-interaction information: research results automatically extracted from the literature and yeast two-hybrid experiments. Based on the domain composition of proteins, we use the model to predict protein interactions for pairs of proteins for which no experimental data are available. We further explore the prediction limits, given experimental data that cover only part of the underlying protein networks. This approach can be extended naturally to include other types of biological data sources.

Algorithms↗

PubMed2004

A comparison of multiple data sources to identify vaccinations for veterans with spinal cord injuries and disorders.

Monitoring vaccination activity requires regular access to information about patient vaccination status. This report describes our experience using multiple Department of Veterans Affairs (VA) data sources to determine availability and completeness of vaccination information for veterans with spinal cord injuries and disorders (SCI&D). Administrative and clinical databases were limited to coding vaccine administration, undercounted vaccinations, and were unable to account for whether the vaccine was offered and the reasons for nonreceipt. Medical record review provided more detail but was labor intensive and costly. Patient surveys provided the richest information but were costly, time-consuming, and based on a sample of patients. Agreement was poor between data sources. This report suggests that while VA is well positioned to use national databases for clinical care decisions and to inform policy, vaccination data were incomplete. Electronic records must include data that are consistently entered and validated before they can be useful for care management and decision making.

Data Collection↗

PubMed2002

Assessing the magnitude of fatal Rocky Mountain spotted fever in the United States: comparison of two national data sources.

To assess the magnitude of fatal Rocky Mountain spotted fever (RMSF) and to evaluate the completeness of national surveillance for this occurrence from 1983 through 1998, two independent sources of RMSF mortality data were analyzed using a capture-recapture method. Two hundred twenty-four deaths reported through RMSF case report forms (CRFs) were compared with 304 RMSF-associated deaths recorded in the United States multiple cause-of-death (MCD) database. Demographic, geographic, seasonal, and temporal characteristics of decedents were remarkably similar between sources. Median annual deaths ascertained from CRF and MCD data sources were 11 (range = 5-35) and 18 (range = 5-39), respectively. Decedents were matched between sources by year, state, age, sex, race, and month-of-death; 111 deaths were matched to both sources, and percent concordance between CRFs and MCD data during the 16-year study period was 27% (range = 7-45%). An estimated 612 RMSF-associated deaths occurred during the study period (median = 37 per year, range = 16-64), suggesting that approximately 400 fatal cases of RMSF went unreported to national surveillance during the period 1983-1998, for an estimated completeness of CRF reporting of 36%.

Death Certificates↗

PubMed2004

Polypharmacy in HIV: impact of data source and gender on reported drug utilization.

Drug use in HIV is complex and may involve multiple therapeutic and nontherapeutic agents including prescription, over-the-counter, complementary and alternative medicine, and social/recreational drugs. This study was designed to assess the extent of such drug use in HIV-infected men and women. One hundred four adults were recruited through the HIV Ontario Observational Database from HIV outpatient clinics throughout Ontario, Canada. Patient demographics and data on drug use and physician awareness of drug use were collected through in-person interviews and medical chart review. All patient interviews and 96% of medical charts revealed the use of at least one drug. Eighty-five percent of patients reported use of antiretroviral medications; nearly 70% used highly active antiretroviral therapy. Patients used significantly more drugs by patient report (15.7 +/- 7.7) than by medical chart review (8.4 +/- 5.0) reporting up to 39 drugs per person. Pill burden was substantial, averaging 20.7 +/- 12.5 and ranged up to 69 "pills-per-day." Patient-reported physician awareness of drug use was highest for prescription drugs and lowest for social/recreational drugs; correspondingly agreement between medical chart and patient report ranged from 80% for antiretrovirals to 10% for non-prescribed drugs. The drug and pill burden faced by patients with HIV is considerable. Prevalence of use for specific drug classes varied with both data source and gender while number of drugs used differed only by data source. Our findings emphasize the complexity of pharmacotherapy in HIV and the need for comprehensive drug assessment, particularly because of the risks of drug-drug interactions and decreased adherence secondary to therapeutic complexity.

Adult↗