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PubMed1992

Manuals for ethnographic data collection: experience and issues.

The authors' experience in developing a manual based on ethnographic methods for collecting, analyzing and using information about the 'cultural context of diarrhea' is presented. The goal of the process outlined in the manual is to recommend programmatic strategies and educational messages that are likely to be effective in achieving the adoption of appropriate diarrhea case management behaviors by mothers. The implications of manuals of this type for the role of anthropologists, and for social science capacity building in developing country programs are discussed. While recognizing that this approach risks limiting the anthropologist's role to a technical one, the authors suggest that appropriate application of program specific manuals can encourage anthropological input into formulating program policies and strategies.

Anthropology, Cultural↗
PubMed2001

Online data collection with special populations over the World Wide Web.

The quick ascendance of the World Wide Web as the dominant vehicle for internet communication has recently made experimentation in a multimedia environment feasible on the Internet. Although web sites containing online psychology demonstrations and experiments for non-handicapped individuals have appeared in recent years (especially in the areas of cognitive and social psychology), there appear to have been few attempts to conduct online experimentation with special populations. We recently completed two online pilot studies of families with Down syndrome or Williams syndrome members: a) A survey that asks (via Likert rating scales, adjective checklists, multiple-choice style questions, and text-entry boxes) about family background, computer use, and temperament of the special needs family member; and b) An experiment (completed by an individual with special needs) that includes auditory and visual digit span tasks and a memory-for-orientation task in which responses are entered via mouse clicks. Recruiting began with e-mail announcements to representative Down syndrome and Williams syndrome discussion groups, listserves, and bulletin boards, and submission of the project's URL (http://www.cofc.edu/~marcellm/testaw.htm) and key indexing terms to selected search engines. This paper reviews technical aspects of developing the online programmes as well as the strengths and weaknesses of online vs. traditional laboratory-based research in relation to issues such as experimental control, delivery of instructions, experimenter bias, participant recruitment, sample heterogeneity, generalization, attrition, privacy, financial costs, data integrity, and ethics. We conclude by offering our thoughts on two ways of implementing online experimentation with special populations: a) Using a remote parent 'helper' as a proxy to work with the target individual; and b) Collaborating with professional colleagues in Web-based projects conducted in traditional laboratory settings.

Child, Preschool↗
PubMed2003

Piloting web-based NAMCS data collection for nurse-managed centers.

Research consistently has shown that Nurse Practitioners (NPs) provide health care equivalent to that of physicians, and especially excel in patient education and case management, essential interventions to promote self-care in chronically ill ambulatory patients. Yet large-scale national studies have not been done. Nurse-managed centers are not included in the sampling frame of the National Ambulatory Medical Care Survey (NAMCS) and only 2.1% of the 2000 sample was from patient encounters with NPs.1 The aims of this pilot study were to create a web-based format for the NAMCS; to expand it by adding selected nursing diagnoses, interventions, and outcomes; and to pilot-test it with 300 patient encounters in 5 nurse-managed centers.

Ambulatory Care Facilities↗
PubMed2001

Tutorial on technology transfer and survey design and data collection for measuring Internet and Intranet existence, usage, and impact (survey-2000) in acute care hospitals in the United States.

This paper provides a tutorial of technology transfer for management information systems in health care. Additionally it describes the process for a national survey of acute care hospitals using a random sample of 813 hospitals. The purpose of the survey was to measure the levels of Internet and Intranet existence and usage in acute care hospitals. The depth of the survey includes e-commerce for both business to business and with customers. The relationships with systems approaches, user involvement, user satisfaction and decision-making will be studied. Changes with results of a prior survey conducted in 1997 can be studied and enabling and inhabiting factors identified. This information will provide benchmarks for hospitals to plan their network technology position and to set goals.

Computer Communication Networks↗
PubMed2006

Lessons learned from taking data collection to the "hood".

Culturally appropriate measures are needed to analyze the effectiveness of HIV prevention interventions. An effective strategy to ensure the culturally appropriateness of measures is the inclusion of participants from the targeted community via participatory action research. Conducting the research process within the community is one method of maximizing greater community participation. The purpose of this paper is to describe a method of pilot testing an instrument within community settings. Findings presented focus primarily on the process of the method, rather than on a statistical outcome testing of the instrument. The sample was 200 African-American women recruited in networks drawn from two rural and two mid-sized counties in North Florida. Methodological issues encountered and resolved through ongoing process evaluation are presented as lessons learned with recommendations and implications.

Adolescent↗
PubMed2002

Retrospective smoking history data collection for deceased workers: completeness and accuracy of surrogate reports.

Few studies have considered the completeness and accuracy of smoking histories from surrogates for deceased workers. We surveyed 68 surrogates for uranium plant workers who completed smoking histories before their deaths. Completeness: 96% of surrogates answered definitively (yes or no) about overall smoking status (e.g., used any tobacco type), and 79 to 100% of those answered definitively about specific tobacco types. Of those reporting positive history, 50% to 67% answered detailed questions. Accuracy: Surrogates were accurate about overall smoking status (Kappa (kappa) = 0.75) compared with index self-report, but tended to underreport (P = 0.10). Spouses and nonspouses performed similarly. Accuracy by tobacco type was moderate (kappa = 0.21 to 0.56), with cigar smoking underreported. Surrogates for cigarette smokers underreported duration and amount smoked. Surrogates for deceased workers can report accurately on overall smoking status, but underreport other smoking habits.

Cause of Death↗
PubMed1980

Data collection techniques: observation.

Use of observation as a measurement procedure, assigning numerals to human behavioral acts, is discussed. Observation has important advantages which makes it best suited for certain kinds of studies, and some limitations which preclude its use in others. The central problems in the use of observation are: (1) the effect of the observer on the observed, which is usually not severe and can be minimized; (2) observer inference, which is a crucial strength and a crucial weakness; and (3) the unit of behavior to be used, which involves the molar-molecular problem. The considerations in planning both unstructured and structured observation studies are discussed, including what to observe, how to record it, how to maximize validity and reliability, and how to handle the relationship between the observer and the observed. Behavior is usually sampled using event sampling or time sampling. The uses and weaknesses of rating scales to assess perceived behavior are summarized.

Behavior↗
PubMed2004

Digital data collection and analysis: application for clinical practice.

Technology for digital speech recording and speech analysis is now readily available for all clinicians who use a computer. This article discusses some advantages of moving from analog to digital recordings and outlines basic recording procedures. The purpose of this article is to familiarize speech-language pathologists with computerized audio files and the benefits of working with those sound files as opposed to using analog recordings. This article addresses transcription issues and offers practical examples of various functions, such as playback, editing sound files, using waveform displays, and extracting utterances. An appendix is provided that describes step-by-step how digital recording can be done. It also provides some editing examples and a list of useful computer programs for audio editing and speech analyses. In addition, this article includes suggestions for clinical uses in both the assessment and the treatment of various speech and language diorders.

Computers↗
PubMed2006

Data collection on multiple births -- establishing twin registers and determining zygosity.

Twins are a valuable resource not only for studies on multiple births themselves, but on the etiology of diseases and other phenotypes. The method of ascertainment and selection of twins can be crucial for such studies and population based twin registries are thus of great importance as tools of research. Accurate determination of zygosity and chorionicity is essential in all studies of multiple births and in their professional care. The parents and the multiples ask for it. It is of pre-and postnatal medical importance and now considered as a prerequisite in several domains of twin research. It is also important for educational reasons as it helps the multiples and their parents and teachers to ascertain identity. The methods are briefly described and a plea is made to the obstetricians and pediatricians to use them systematically at birth. The distribution of zygosity and chorionicity types among spontaneous and induced twin births are illustrated.

Data Collection↗
PubMed1980

Types of research: a synopsis of the major categories and data collection methods.

Different types of research are categorized by reviewing their characteristics and describing how they can be used. Controlled research is experimental in nature and, through a priori planning, allows manipulation of the independent variable so causality can be shown. In ex post facto research, the researcher does not have control of the independent variable and so must infer causality by measuring dependent variables within the framework of independent variables that are already established or whose changes have already taken place. Most applied research in pharmacy is of the ex post facto type. The research questions to be answered will help determine the timing of the measurement of dependent variable (i.e., measure past events or make plans to measure future events), the measuring of the dependent variable (primarily with surveys), and whether time can be used as an independent variable. The effect of time can be determined by repeated measurements over a span of time (longitudinal design) or by measurement of several groups at one point in time (cross-sectional design).

Data Collection↗
PubMedDate not supplied

[Validation of data collection for an American trypanosomiasis epidemiologic study in the State of Morelos, México].

The purpose of this paper is to show up the importance of the standardization concepts in American Trypanosomiasis epidemiological studies. The consistence in the measurement of some dwelling characteristics was evaluated. A validation of the Queretaro antigen for indirect hemagglutination reaction as a diagnostic test and the interobserver concordance for the serologic readings were also made. The observers were instructed in some sessions. The pretests were made in the laboratory with positive and negative sera, with sera from the studied population. Results show that the interobserver concordance after the instruction, for the dwelling variables ranged from 70% to 100%. Sensitivity of the Queretaro antigen was 100%, specificity 55%, the predictive value of a positive test 55%, and the predictive value of a negative test 93%. The interobserver concordance was 47%. The pretest and the pilot study are very important in getting the objectives of the principal study.

Chagas Disease↗
PubMed2002

National Pharmaceutical Stockpile drill analysis using XML data collection on wireless Java phones.

This study describes an informatics effort to track subjects through a National Pharmaceutical Stockpile (NPS) distribution drill. The drill took place in Seattle on 1/24/2002. Washington and the State Department of Health are among the first in the nation to stage a NPS drill testing the distribution of medications to mock patients, thereby testing the treatment capacity of the plan given a post-anthrax exposure scenario. The goal of the Public Health Informatics Group at the University of Washington (www.phig.washington.edu) was to use informatics approaches to monitor subject numbers and elapsed time. This study compares accuracy of time measurements using a mobile phone Java application to traditional paper recording in a live drill of the NPS. Pearson correlation = 1.0 in 2 of 3 stations. Differences in last station measurements can be explained by delay in recording of the exit time. We discuss development of the application itself and lessons learned. (MeSH Bioterrorism, Informatics, Public Health)

Anti-Bacterial Agents↗
PubMed2001

Identifying and prioritizing gaming workers' health and safety concerns using mapping for data collection.

BACKGROUND: This research was prompted by the clinical presentation of workers from a variety of gaming occupations with injuries and illnesses and multiple health and safety concerns. METHODS: Using participatory action research principles, 51 gaming workers in Ontario and 20 gaming workers in Manitoba were consulted during a series of focus group sessions. Mapping exercises were used to survey the participants about their health concerns, perceived occupational hazards and the impact of working conditions on their personal lives. Participants were then asked to prioritize their concerns and make recommendations for improvements. RESULTS: Gaming workers from both provinces identified similar health, hazard and psycho-social concerns. They prioritized the issues of stress, ergonomics, indoor air quality (including second-hand smoke and temperature), biological hazards, physical hazards and noise. CONCLUSIONS: This study points to a need to more fully investigate and address health and safety issues in the gaming industry. It also demonstrates the effectiveness of a worker-driven, participatory consultation.

Adult↗
PubMed1987

Discovering carcinogens in the occupational environment. Methods of data collection and analysis of a large case-referent monitoring system.

A multi-cancer site, multi-factor, case-referent study was undertaken to generate hypotheses about possible occupational carcinogens. About 20 types of cancer were included. Incident cases among men aged 35-70 years and diagnosed in any of the major Montreal hospitals were eligible. Probing interviews were carried out for 3 726 eligible cases. The interview was designed to obtain detailed lifetime job histories and information on potential confounders. Each job history was reviewed by a team of chemists who translated it into a history of occupational exposures. These occupational exposures were then analyzed as potential risk factors in relation to the sites of cancer included. For each site of cancer analyzed, referents were selected from among the other sites in the study. The analysis was carried out in stages. First a Mantel-Haenszel analysis was undertaken of all cancer-substance associations, stratifying on a limited number of covariates, and, then, for those associations which were noteworthy in the initial analysis, a logistic regression analysis was made taking into account all potential confounders. This report describes the fieldwork and analytical methods.

Carcinogens, Environmental↗
PubMed1993

Ventilation-perfusion scintigraphy in the PIOPED study. Part I. Data collection and tabulation.

The Prospective Investigation of Pulmonary Embolism Diagnosis (PIOPED) study of more than 700 patients is the largest existing study of the accuracy of lung scintigraphy in the diagnosis of acute pulmonary embolism. Perfusion scans were obtained in all patients and ventilation scans in almost all, using standardized techniques. Chest radiographs were obtained in all patients within 12 hr of the lung scan. Most patients underwent pulmonary arteriography. The images were interpreted according to a set of interpretive criteria which remained constant throughout the trial. A standardized, detailed description of each image set was derived by consensus of teams of two readers blinded to clinical and arteriographic findings. This communication reports the methods used to describe and categorize the ventilation-perfusion scintigrams obtained in patients who were enrolled in the PIOPED study. Scintigraphic technique is reviewed briefly, probability assessment is described and the scan description is reviewed in detail. The form used to describe the findings on ventilation-perfusion scans is reproduced. Use of this standardized description permits retrospective evaluation of the PIOPED interpretive criteria. In addition, it represents a rigorous approach to scan analysis which could facilitate application of formal interpretive schemes and enhance the reproducibility of lung scan interpretations in the clinical setting.

Data Collection↗
PubMed2006

Consensus statement on injury definitions and data collection procedures in studies of football (soccer) injuries.

BACKGROUND: Variations in definitions and methodologies have created differences in the results and conclusions obtained from studies of football (soccer) injuries; this has made interstudy comparisons difficult. PROCEDURE: An Injury Consensus Group was established under the auspices of Fédération Internationale de Football Association Medical Assessment and Research Centre. Using a nominal group consensus model approach, a working document that identified the key issues related to definitions, methodology, and implementation was discussed by members of the group during a 2-day meeting. After this meeting, iterative draft statements were prepared and circulated to the members of the group for comment before the final consensus statement was produced. RESULTS: Definitions of injury, recurrent injury, severity, and training and match exposures in football, together with criteria for classifying injuries in terms of location, type, diagnosis, and causation are proposed. Proforma for recording players' baseline information, injuries, and training and match exposures are presented. Recommendations are made on how the incidence of match and training injuries should be reported and a checklist of issues and information that should be included in published reports of studies of football injuries is presented. CONCLUSIONS: The definitions and methodology proposed in the consensus statement will ensure that consistent and comparable results will be obtained from studies of football injuries.

Athletic Injuries↗
PubMed1986

Italian registry of patients off therapy after childhood acute lymphoblastic leukemia. Results after first phase of data collection.

The Italian Registry of Off-Therapy patients after childhood tumors now includes 760 subjects with acute lymphoblastic leukemia. These patients were all removed from treatment by December 31, 1981, and were followed in 35 different institutions. All the children have received multiple-drug treatment, combined, in 79.7% of the cases, with cranial irradiation. Thirty-nine (5%) experienced a relapse before treatment suspension. Total duration of antileukemic therapy ranges between 18 and 131 months (median, 38). At the last updating (December 31, 1981), 699 subjects were alive, 6 were lost to follow-up, and 55 had died. Life-table analysis shows that 90.8% were alive and 77% were alive in continuous complete remission at 36 months, whereas at 66 months, the cumulative proportions were 88% and 75.5%, respectively. One hundred thirty-six of 760 relapses after therapy suspension were reported: 83 in male patients and 53 in female patients (P less than 0.01). The longest interval between relapse and treatment suspension was 64 months. Six of 55 died in continuous complete remission 3 to 44 months after treatment suspension. Five births of apparently normal babies to female patients have been reported. A general outline of the project and the future program are given.

Actuarial Analysis↗
PubMed2005

The use of electronic debit cards in longitudinal data collection with geographically mobile drug users.

OBJECTIVE: To assess the use of electronic debit (ATM) cards in conducting longitudinal research with geographically mobile ("urban nomad") drug users. METHODS: Young illicit drug users with recent travel history were street-recruited from the Lower East Side area of New York City. Multiple efforts were made to develop positive relationships between participants and the study. Honoraria were paid through electronic debit cards usable at ATMs countrywide. Participants were encouraged to complete follow-up interviews in person if they were in New York, or by telephone if elsewhere. Follow-up rates from two other recent cohort studies of young drug users in New York are used to illustrate use of the electronic debit card method. RESULTS: One hundred and thirty-nine participants were recruited during 2001-2002. They had traveled extensively, averaging 31 trips per participant to different cities during the previous 3 years. Telephone follow-up interviews were obtained from participants in over 200 different cities/towns. Follow-up interview rates were 81% at 6 months and 71% at 12 months - substantially higher than corresponding rates in the comparison studies. CONCLUSIONS: The use of electronic debit cards, combined with other efforts to develop positive relationships with participants, led to high rates of continued study participation. Debit cards may be very useful in conducting longitudinal research with geographically mobile populations.

Adolescent↗