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PubMed1991

Standardized data collection and coding in eye disease epidemiology: the Uveal Melanoma Data System.

The Uveal Melanoma Data System of the Massachusetts Eye and Ear Infirmary is a computerized data-base designed for data management and analysis with a broad range of clinical research applications. The system was created in 1980 and has evolved to include standardized data collection forms for all aspects of uveal melanoma patient care such as initial examination, treatment, and follow-up, as well as precoded forms for computer entry, which facilitate quality control measures and data analysis. Excerpts from current versions of these forms are presented. The Uveal Melanoma Data System has been used for a variety of clinical epidemiologic investigations. Examples of its application, including descriptive studies, prognostic factor studies, and treatment evaluations, are discussed. The model has potential broad application for clinical ophthalmic research in other specialty areas.

Data Collection↗

PubMed2003

Optimizing data collection for structure determination.

The ultimate purpose of diffraction data collection is to produce a data set which will result in the required structural information about the molecule of interest. This usually entails collecting a complete and accurate set of reflection intensities to as high a resolution as possible. In practice, the characteristics of the crystal and properties of the X-ray source can be limiting factors to the data-set quality that can be achieved and a careful strategy has to be used to extract the maximum amount of information from the data within the experimental constraints. In the particular case of data intended for phasing using anomalous dispersion, the synchrotron beamline properties are relevant to determine how many wavelengths (one or more) should be used for the experiment and what the wavelength values should be. This will in turn affect the detailed strategy for data collection, including decisions about the data-collection sequence and how much data to collect at each wavelength. Collection of multiwavelength anomalous dispersion (MAD) data at three different wavelengths can provide very accurate experimental phases. Two-wavelength MAD experiments may offer the best compromise between phase quality and minimizing the effects of radiation damage to the sample. However, MAD experiments are demanding in terms of beamline wavelength range, easy tunability, stability and reproducibility. When the beamline cannot fulfill these demands, single-wavelength experiments may be a better option.

Crystallography, X-Ray↗

PubMed1998

Internet based data collection and analysis.

This paper will discuss Internet based data collection and analysis utilizing a Windows 95 and a UNIX hosted system. Forms on the World Wide Web (WWW) that illustrate the use of this technology in medical research, conference registration, and patient care will be highlighted. Some of the details involved with creating data collection forms will be presented. The paper concludes with the recommendation that the Health Telematics curricula should include a unit on creating Internet based data collection forms.

Computer Communication Networks↗

PubMed1979

Women and health statistics: areas of deficient data collection and integration.

Improved data on women's health should be based on a definition of health capital for women that takes into account reproductive efficiency and the life experience of women in relation to fertility, general health, employment, and household responsibilities. More information is needed about the conduct of household roles related to investment in health capital for family members. Definitions of health are pragmatic and are related to social systems, including health care providers, for which the definitions serve as signals for certain actions. Women can seek to modify these definitions, which have expressed historical biases about women. Data collection should include information about the extent to which privacy as a dimension of access to health care is achieved. Longitudinal and other approaches to health history data should be explored. Fertility and general health data statistics in federal data systems need to be integrated. Insurance adequacy must be determined in relation to benefit scope, relation to prices, employment requirements, and family contracts. Data that will be helpful in adapting industrial environment to health goals are needed. Provider characteristics relevant to women as patients and workers, and qualities of residential environments pertaining to health, need to be studied. Future research should include evaluation of women's health capital and opportunities for programmatic investment to improve household efficiency in conduct of health-related affairs.

Employment↗

PubMed1989

Interfacing bioinstruments with computers for data collection in nursing research.

Nurse researchers gain many advantages over manual collection and recording of data when they interface bioinstruments with computer technology for data collection. This article describes both the advantages and disadvantages of such technology, and uses examples from a study evaluating the effects of parent touch on preterm infants to illustrate strategies to overcome potential disadvantages.

Analog-Digital Conversion↗

PubMed1992

From research question to analysis: the importance of data collection form design.

The development of data collection forms is an extremely valuable planning phase for a research study. Stepping through the process as outlined in Table 3 can save time and resources because the process will help the researcher define only those variables necessary to accomplish the research objectives, define the type of forms that should be developed for the selected variables, and develop forms that will assist the collection of standard, reliable, and valid data.

Data Collection↗

PubMedDate not supplied

Longitudinal research and data collection in primary care.

PURPOSE: This article reviews examples of and experience with longitudinal research in family medicine. The objective is to use this empirical information to formulate recommendations for improving longitudinal research. METHODS: The article discusses 3 longitudinal studies from the Nijmegen academic family practice research network: 1 on the prognosis of depression and 1 each on the prognosis of and outcomes of care for type 2 diabetes mellitus. The Nijmegen network has recorded all episodes of morbidity encountered in Dutch family medicine since 1971 in a stable practice population. This network's experience is evaluated to identify lessons that may help other practice-based research networks (PBRNs) in pursuing longitudinal research. RESULTS: In terms of external conditions (conditions related to the general setting), the stability of a population and a high level of continuity of care substantially enhance the ability to perform longitudinal research. In terms of internal conditions (conditions related to the PBRN), motivation of family physicians and their staff to conduct ongoing data collection, and their ownership of the data are key for success. Other critical internal conditions include standardization of data; collection of data by clinician-friendly means; training of family physicians and their staff in data collection, as well as meetings for discussion of this task; provision of feedback to practices on the research findings; use of standard procedures to promote adherence to data collection; availability of facilities for regular measurement of patients' health status or chart review; and use of mechanisms for tracking patients who leave the practice area. CONCLUSIONS: Insight from existing experience suggests that longitudinal research can be enhanced in PBRNs. The best way forward is to build longitudinal data collection by drawing on lessons from successful studies. Primary care research policy should advocate for a role of longitudinal research and stimulate its development in PBRNs under favorable population circumstances.

Biomedical Research↗

PubMed2006

Data collection from very low birthweight infants in a geographical region: methods, costs, and trends in mortality, admission rates, and resource utilisation over a five-year period.

AIMS: 1. To determine the survival and morbidity of infants at discharge with a birthweight of less than 1500 g in the geographically defined population of East Anglia. 2. To demonstrate a cost-effective method of regional data collection. 3. To determine whether there were any changes in the demand for neonatal care. STUDY DESIGN AND SUBJECTS: A prospective cohort analysis using a single database to collect data on 1244 very low birthweight infants from eight neonatal units in one Region from 1993 to 1997. RESULTS: Estimated ascertainment of VLBW infants to the study was 96%. Over the 5 years survival rates were stable (75-79%). 52% of deaths in infants admitted for neonatal care occurred on day 1, with just 15% of deaths occurring after 28 days of life. Mortality risk significantly decreased with increasing gestational age at birth. Compared to 22-25-week old infants, the mortality risk decreased by 65% for 26-27-week old infants (OR 0.35 95% CI (0.21, 0.59)) and by 92% for 32-39-week old infants (OR 0.08 95% CI (0.03, 0.21)) with intermediate odds ratios of 0.22 (0.12, 0.42) and 0.13 (0.06, 0.28) for the 28-29 and 30-39 weeks gestation, respectively. Higher birthweight, after adjusting for gestation also decreased the mortality risk (OR 0.78 per 100 g difference, 95% CI (0.71, 0.86)). No change was seen in the number of extremely preterm infants admitted for intensive care or resource utilisation, although a significant increase was seen in the number of infants dying in delivery rooms. There was a reduction in the reported incidence of pulmonary interstitial emphysema (10-4%) but no change in the number of ventilation days or the rate of chronic lung disease. The mean maternal age increased from 27.7 years to 28.9 years during the study. Maternal steroid administration increased (30% to 59%) and was associated with a decreased risk of mortality (OR 0.44, 95% CI: 0.31-0.62). CONCLUSIONS: It is possible to collect useful data from the neonatal period at a reasonable cost from a geographically defined population. This information was used for informing clinicians, counselling parents and in the era of managed clinical networks will be useful in guiding the provision of effective health care resources.

Cohort Studies↗

PubMed1989

A study of the effects of frequency of probe data collection and graph characteristics on teachers' visual analysis.

Teachers often rely on visual analysis of graphed student performance data to evaluate progress and make program decisions. However, because collecting data can be time consuming and interfere with instruction, teachers would like to know how much data is necessary to make reliable judgments. To investigate the effect of frequency of data collection on teachers' judgments and decisions, this study addressed the question of whether teachers' judgments differ according to frequency of data collection, whether teachers' judgments differ according to type of trend, and whether teachers' judgments based on different types of graphs vary with frequency of data collection. A set of 16 graphs of actual student performance data was analyzed by 59 teachers of students with moderate to profound handicaps. The data were analyzed by a two-factor repeated measures design, and results indicated that when asked to evaluate student performance, teachers' judgments tended to be consistent and accurate when the graphed data represented continuous and systematic improvement in performance. However, when the data represented a decrease in performance, no change, or highly variable performance, judgments tended to differ by frequency. When asked to make program recommendations, teachers' judgments tended to differ by frequency for all types of trends.

Data Collection↗

PubMed1993

Data collection and complication rates in clinical audit.

Audit data were collected continuously between February 1988 and July 1991. For the initial period (February 1988-June 1990) data were collected by monitoring of ward admission and discharge records and by collecting data from operating theatre records whilst complications were noted in a 'complications book' which was kept on the notes trolley. In July 1991, when a computerized system for storing and processing audit data was introduced into the department, the methods of data collection changed. For each patient a proforma was attached to the clinical notes which was filled in at each stage of the hospital stay. On this proforma was a list of possible complications which were ticked, as appropriate, at the time of discharge from hospital. We have reviewed the results of clinical audit during these two periods. The number of operations performed per month fell slightly in the latter period (p = 0.005). However, there was a significant increase in both the number of complications (p < 0.0001) and in the complication rate (p < 0.0001). Further analysis showed that there was a similar increase in the number of recorded major and minor complications, and that this increase was also seen even when changes in medical personnel were accounted for. We suggest that the increased complication rate recorded in the latter period reflects the change in the method of data collection. This has important implications when comparing outcome measures for clinical departments.

Consultants↗

PubMed2002

ESHRE Preimplantation Genetic Diagnosis Consortium: data collection III (May 2001).

The ESHRE PGD Consortium was formed in 1997 to undertake a long-term study of the efficacy and clinical outcome of preimplantation genetic diagnosis (PGD). Here, the third report of the ESHRE PGD Consortium is presented, collating data received from 25 centres on referrals, cycles, pregnancies and babies born after PGD. The second report, published in December 2000, reported on 886 referrals, a total of 1318 started cycles (of which 465 for aneuploidy screening, 386 for fluorescence in-situ hybridization (FISH) and 385 for PCR going beyond oocyte retrieval), 163 pregnancies and 162 children born. This year, 675 referrals from 12 centres were added giving a total of 1561 referrals, 370 regular PGD cycles, 334 PGD-aneuploidy screening (PGD-AS) cycles and 78 cycles for social sexing from 24 centres and 215 pregnancies and 117 babies from 12 centres. Because more in-depth information was asked for the cycles, this year's data will be shown separately as well as cumulatively. One striking feature of this year's data collection is the appearance of the first data for gender screening on preimplantation embryos for social reasons. The ethical concerns regarding social sexing will be discussed, as well as the forthcoming changes in timing of data collection. When the data collection was discussed at the last meeting of the members of the ESHRE PGD Consortium in Lausanne, Switzerland (June, 2001), it appeared that the current system of data collection, although yielding results very quickly, showed fundamental flaws. The ESHRE PGD Consortium Steering Committee intends to remedy to these problems, on the one hand by introducing a new type and timing of data collection, and on the other hand by re-analysing and correcting the data which have already been sent in during the past 4 years.

Aneuploidy↗

PubMed2006

[Data collection for quality assurance in neonatology: how do physicians compare to documentation specialists?].

BACKGROUND: The quality of data collected for the German nationwide quality assurance program in neonatology is currently unknown. The aim of this study was to compare the quality of data collected by resident physicians with the quality of similar data collected by a dedicated research nurse. METHODS: Data for the German national quality assurance program in neonatology, derived from a cohort of 128 premature newborns with a birth weight <1500 g and/or a gestational age of <30 weeks born in the year 2003, were collected by residents taking care on these patients, and separately by a dedicated research nurse for the European Neonatal Network (EuroNeoNet). The data set collected for both networks included 44 common data items. The two data sets were compared, and any disagreement was double-checked using the chart of the baby to clarify which of the data entries was wrong. Furthermore, as data items are not equally important, a weighted analysis of all mistakes was performed. RESULTS: We found wrong data in 108/128 (84 %) of the data sets collected by the residents, and in 43/128 (34 %) of the data sets collected by the research nurse (p < 0.001). The weighted analysis revealed that residents made more mistakes in 30/44 of collected data items, whereas the research nurse did worse only in 1/44 data items. CONCLUSION: This study shows that the quality of data obtained by our resident physicians was worse than the quality of data obtained by our dedicated research nurse.

Clinical Nursing Research↗

PubMed2005

A comparison study: paper-based versus web-based data collection and management.

The purpose of this pilot study was to compare the cost, accuracy, and efficiency of a web-enhanced handheld computer data collection system with those of the traditional paper-based data collection and management system and to increase awareness/knowledge of researchers on these two data collection and management methods. This is an important topic because funding resources are diminishing and high startup costs associated with automated data collection systems may give researchers pause when faced with these financial expenditures. Hence, this information will position grant writers and funders to make intelligent decisions regarding the feasibility and advantage of web-enhanced electronic data collection strategies.

Computers, Handheld↗

PubMed2005

Accurate data collection for head injury monitoring studies: a data validation methodology.

BACKGROUND: BrainIT is a multi centre, European project, to collect high quality continuous data from severely head injured patients using a previously defined [6] core data set. This includes minute-by-minute physiological data and simultaneous treatment and management information. It is crucial that the data is correctly collected and validated. METHODS: Minute-by-minute physiological monitoring data is collected from the bedside monitors. Demographic and clinical information, intensive care management and secondary insult management data, are collected using a handheld computer. Data is transferred from the handheld device to a local computer where it is reviewed and anonymised before being sent electronically, with the physiological data, to the central database in Glasgow. Automated computer tools highlight missing or ambiguous data. A request is then sent to the contributing centre where the data is amended and returned to Glasgow. Of the required data elements 20% are randomly selected for validation against original documentation along with the actual number of specific episodic events during a known period. This will determine accuracy and the percentage of missing data for each record. CONCLUSION: Advances in patient care require an improved evidence base. For accurate, consistent and repeatable data collection, robust mechanisms are required which should enhance the reliability of clinical trials, assessment of management protocols and equipment evaluations.

Brain Injuries↗

PubMed2006

[Evaluation of clinical practices: methods of data collection and information sources?].

OBJECTIVE: The aim of our study is to present the methods used to observe clinical practices, to evaluate their advantages and limits, and to specify the context in which they are preformed. METHODS: We conducted a bibliographical search on MEDLINE using key words, completed by an offline search. We selected articles published in French or English between 1985 and 2003. RESULTS: Thirty articles, of which 3 were reviews, as well as an additional 5 reports and 9 books, were selected. We distinguished direct or objective approaches to clinical practices as well as indirect or declarative approaches. We also noted whether the approach was individual with data collected from individual practitioners, or collective, with data coming from databases. Most methods of collecting data used medical records, often in the context of internal or external clinical audits or peer reviews. The other sources of data were self-administered questionnaires, written case simulations and simulated patients. Data was also extracted from previously existing databases: claims databases, registries and ad hoc databases. CONCLUSION: An objective individual approach insures the highest quality of information, but possible high costs can limit the use of this approach. It is necessary to continue researching the best means of collecting data on clinical practices, because of the obligation of each practitioner to evaluate individual clinical practices.

Data Collection↗

PubMed1990

Computer-assisted data collection in multicenter epidemiologic research. The Atherosclerosis Risk in Communities Study.

The Atherosclerosis Risk in Communities (ARIC) Study uses a computer-assisted data collection (CADC) system in which staff at four Field Centers directly record into microcomputers much of the data obtained from the 16,000 study participants during 4 hours of interviews and exams. A pilot study was conducted to evaluate the feasibility of training Field Center staff in the use of a CADC system and to assess study participants' reaction to such a system. When asked to compare CADC to a paper-based system, all five of the pilot study staff members preferred the CADC system. The 16 pilot study participants either had no preference (63%) or preferred CADC (37%). With respect to data quality, no systematic differences between the two methods of data collection were evident in the pilot study. The CADC system required approximately 10% longer for data collection, keying, and editing than the paper-based system took for collection alone. Immediate data entry in a CADC system may improve data quality by eliminating a transcription step and by allowing prompt detection of suspicious values while the participant is still available to provide confirmation or correction. CADC simplifies data collection by automating complex branching questions and can enhance data completeness. The ARIC CADC system is based on commercially available software customized by the study's Coordinating Center. The microcomputer-based CADC system described in this report may serve as the prototype for future epidemiologic studies that collect standardized data on large numbers of participants at a small number of sites.

Arteriosclerosis↗

PubMed1995

Resident data collection: do the numbers add up?

OBJECTIVES: Our purpose was to investigate methods for standardization of data collection across residency training programs in obstetrics and gynecology. STUDY DESIGN: A survey was developed and sent to all accredited residency programs in the United States and Canada. It assessed each program's current data collection method and whether the system could track discrepancies, account for completeness of data, or collect primary care data. The second part of the survey was designed to assess program director consistency in assignment of resident responsibility. RESULTS: In 78.5% of programs residents used a paper-based system. Only 27.1% and 31.3% of the residency programs, respectively, had systems for resolving resident responsibility conflicts or determining accuracy percentages. Few (8.3%) program directors were able to collect primary care data. There were wide variations among program directors in assignment of resident responsibility in the simulated cases, indicating different interpretations of Residency Review Committee reporting criteria. CONCLUSIONS: Most resident data systems in use do not promote or require standardization of data collection; therefore comparisons between programs would be difficult. The ideal system would be flexible, require standardization of data collection, enable direct transfer to Residency Review Committee forms, be translatable to any residency program, and allow meaningful intraprogram and interprogram comparisons.

Data Collection↗

PubMed1998

Automation of data collection for matrix-assisted laser desorption/ionization mass spectrometry using a correlative analysis algorithm.

Automation of data collection in matrix-assisted laser desorption/ionization (MALDI) mass spectrometry using a correlative analysis algorithm is demonstrated. This algorithm was employed to compensate for mass spectral jittering in MALDI data collection (e.g., peak shifts along the m/z axis, signal intensity deviations, etc.). Several important parameters for performing correlative analysis, such as the minimum correlation coefficient to be used and number of mass spectra to acquire prior to correlation, have been investigated and optimized. In addition, the correlation algorithm improved mass resolution of low- and high-molecular-weight compounds by as much as a factor of 4. Signal reproducibility in MALDI quantitative analysis also is improved when correlation is employed for data collection. This data collection algorithm can be used in conjunction with other instrumental optimization programs to allow for fully automated MALDI analysis, which is required for the routine applications carried out in many analytical laboratories.

Algorithms↗