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At least 19 recordsLinked to original sources
PubMed1979

Significance of data collection. Viewpoint - academia.

The academic view of the collection of data relating to the health of workers must reflect a concern for the value of the data for research purposes. Most routine data systems do not provide information of research quality, and often are not appropriate or sufficiently detailed to allow specific hypotheses to be tested. the cost of serving research purposes in such systems is likely to be prohibitive. However, the monitoring of illness in groups of employees can and should serve as a most valuable research resource when viewed as a screening and detection mechanism. Therefore, a data collection system should be carefully designed with research needs in mind, so that it will be appropriately sensitive and consistent.

Epidemiologic Methods↗
PubMed1976

Development of long-term care data systems. 20. Problems of data collection in long-term health care.

Data collection involves decisions of what to count, how to count, and what to do with the count. The first of these will be determined by the third, since it is the goals which decide what data should be collected. Ways of categorizing and classifying patients, services, treatments, and personnel in relation to long-term medical care must be formulated, and development of comparable data requires definition of baselines or units of observation. Many decision makers with widely varying interests will be competing for information, and to ensure timeliness and accuracy, data collection should be restricted to a minimum of simple, easily obtained, and unambiguous items. Routine reporting of events, periodic censuses relating to persons, and sample surveys all have advantages and limitations. Probably the most useful tools are long-term care registers, as they enable longitudinal studies of patient cohorts. Reliable but confidential means for linking personal records must be found and all records in the system must flow into a central collecting point.

Classification↗
PubMed2025

Building a Digital Health Research Platform to Enable Recruitment, Enrollment, Data Collection, and Follow-Up for a Highly Diverse Longitudinal US Cohort of 1 Million People in the All of Us Research Program: Design and Implementation Study.

BACKGROUND: Longitudinal cohort studies have traditionally relied on clinic-based recruitment models, which limit cohort diversity and the generalizability of research outcomes. Digital research platforms can be used to increase participant access, improve study engagement, streamline data collection, and increase data quality; however, the efficacy and sustainability of digitally enabled studies rely heavily on the design, implementation, and management of the digital platform being used. OBJECTIVE: We sought to design and build a secure, privacy-preserving, validated, participant-centric digital health research platform (DHRP) to recruit and enroll participants, collect multimodal data, and engage participants from diverse backgrounds in the National Institutes of Health's (NIH) All of Us Research Program (AOU). AOU is an ongoing national, multiyear study aimed to build a research cohort of 1 million participants that reflects the diversity of the United States, including minority, health-disparate, and other populations underrepresented in biomedical research (UBR). METHODS: We collaborated with community members, health care provider organizations (HPOs), and NIH leadership to design, build, and validate a secure, feature-rich digital platform to facilitate multisite, hybrid, and remote study participation and multimodal data collection in AOU. Participants were recruited by in-person, print, and online digital campaigns. Participants securely accessed the DHRP via web and mobile apps, either independently or with research staff support. The participant-facing tool facilitated electronic informed consent (eConsent), multisource data collection (eg, surveys, genomic results, wearables, and electronic health records [EHRs]), and ongoing participant engagement. We also built tools for research staff to conduct remote participant support, study workflow management, participant tracking, data analytics, data harmonization, and data management. RESULTS: We built a secure, participant-centric DHRP with engaging functionality used to recruit, engage, and collect data from 705,719 diverse participants throughout the United States. As of April 2024, 87% (n=613,976) of the participants enrolled via the platform were from UBR groups, including racial and ethnic minorities (n=282,429, 46%), rural dwelling individuals (n=49,118, 8%), those over the age of 65 years (n=190,333, 31%), and individuals with low socioeconomic status (n=122,795, 20%). CONCLUSIONS: We built a participant-centric digital platform with tools to enable engagement with individuals from different racial, ethnic, and socioeconomic backgrounds and other UBR groups. This DHRP demonstrated successful use among diverse participants. These findings could be used as best practices for the effective use of digital platforms to build and sustain cohorts of various study designs and increase engagement with diverse populations in health research.

Humans↗
PubMed1978

Monitoring disease in England and Wales: methods applicable to routine data-collecting systems.

This paper reviews routine data-collecting systems and methods for disease surveillance in England and Wales. It discusses population-based correlation studies, which seek to explain disease trends by relating routine health statistics to possible causative agents on a secular, geographical, or occupational basis. It describes recent developments in linking information collected by routine general purpose systems as a means of identifying and following individuals exposed to potential hazards.

Death Certificates↗
PubMed1976

Medical economics survey-methods study: design, data collection, and analytical plan.

This paper describes the background, methodology, data collection, and analytical plan of a pilot investigation conducted under contract for the National Center for Health Statistics during 1975. The objective was to determine the cost effectiveness of a variety of strategies under consideration for national application to develop previously unavailable information on utilization of, and the costs and payments for, health care. Detailed data on health care utilization and expenditures were collected periodically from a panel of 691 Maryland households over a six-month interval. Issues to be tested through a random experimental design include whether periodicity (monthly vs bimonthly interviews) and type of contact (in-person vs telephone) are significant factors in the cost effectiveness of this type of survey. An extensive record check involving all providers and third-party payers identified in the household survey was carried out. Record information will be used to 1) provide a basis for measuring accuracy of household data, 2) fill gaps in household knowledge, and 3) determine whether a subset of the record sources can provide adequate information for correcting household data. The household survey resulted in an initial response rate of 77.5 per cent with a subsequent attrition rate over six months of 13.6 per cent. Signed permission to access record data was obtained for 84.9 per cent of the individuals completing the entire survey. The most intensive survey strategy, monthly, mostly in-person contact, resulted in the lowest participation. The analytical plan presents details of the approaches to be taken in making judgments on the relative accuracy and completeness of data obtained by the various survey strategies and the contribution made by availability of data from record sources.

Adolescent↗
PubMed1992

TCK: a clinical genetics data collection system.

This work examines the database design and user interface design for a clinical genetics data collection system known as TCK. A specific design goal is automatic generation of the CORN reports. Emphasis in this paper is on how the logical data model resulting from the database design, and the user interface work together to enforce the enterprise results pertaining to data. Data screens are shown, sample queries are explained and the data mapping to the CORN reports presented.

Computer Simulation↗
PubMed1979

Data collection for cross-sectional image reconstruction by a moving ring of positron annihilation detectors.

A ring of positron annihilation detectors capable of two independent motions in the plane of the ring is considered. It can rotate around its center, and the whole ring may move so that its center traces a circular path. Provided certain parameters are chosen according to given formulas, data collected by such a detector ring can be reorganized (rebinned), in a computationally very inexpensive fashion, so that the data items in each bin are measurements along parallel lines spaced at small equal intervals. Efficient high resolution reconstruction algorithms that assume such data organization can therefore be applied to data collected collected by a moving positron ring detector. The method is demonstrated on a realistic example.

Computers↗
PubMed1975

Gamma-ray spectrometry data collection and reduction by simple computing systems.

The review summarizes the present state of the involvement of relatively small computing devices in the collection and processing of gamma-ray spectrum data. An economic and utilitarian point of view has been chosen with regard to data collection in order to arrive at practically valuable conclusions in terms of feasibility of possible configurations with respect to their eventual application. A unified point of view has been adopted with regard to data processing by developing an information theoretical approach on a more or less intuitive level in an attempt to remove the largest part of the virtual disparity between the several processing methods described in the literature. A synoptical introduction to the most important mathematical methods has been incorporated, together with a detailed theoretical description of the concept gamma-ray spectrum. In accordance with modern requirements, the discussions are mainly oriented towards high-resolution semiconductor detector-type spectra. The critical evaluation of the processing methods reviewed is done with respect to a set of predefined criteria. Smoothing, peak detection, peak intensity determination, overlapping peak resolving and detection and upper limits are discussed in great detail. A preferred spectrum analysis method combining powerful data reduction properties with extreme simplicity and speed of operation is suggested. The general discussion is heavily oriented towards activation analysis application, but other disciplines making use of gamma-ray spectrometry will find the material presented equally useful. Final conclusions are given pointing to future developments and shifting their centre of gravity towards improving the quality of the measurements rather than expanding the use of tedious and sophisticated mathematical techniques requiring the limits of available computational power.

Activation Analysis↗
PubMed1992

Quality control of dietary data collection in the CARDIA study.

The Coronary Artery Risk Development in (Young) Adults (CARDIA) Study developed and implemented quality control (QC) measures to minimize misclassification associated with dietary data. Manual and automated data inspection were used to monitor quality. Of the 5111 participants who completed a dietary history, 717 (14%) had dietary forms reviewed and 153 (3%) had the interview audiotaped. Results show that for the 717 forms reviewed, the overall form completion error rate was 0.22% and the "critical" error rate (i.e., those errors impacting on nutrient computations) was 0.12%. The proportion of forms free of any type of error increased over time (p less than 0.0001). The discrepancy rate in recording and interviewing methods as estimated from the 153 audiotaped interviews was 0.7%. Inter-interviewer differences were small as indicated by the audiotaped interviews and the proportion of error-free forms completed by interviewers. The results indicate that the dietary data collected in CARDIA were completely and accurately recorded for use in analysis.

Adolescent↗
PubMed1976

A quantitative assessment of femoral head activity using 99Tcm -polyphosphate and a computer data collection system.

Abnormal femoral head activity in Legg-Calve-Perthes' disease has been measured using 99Tcm -polyphosphate and a gamma camera/computer data collection system. A reference point on the data matrix, which is unaffected by the diease, is used for deriving comparative uptake ratios in each femoral head. The reference point remains unaltered after surgical procedures or short intervals between follow-up studies. Early abnormality can be measured in both unilateral and bilateral femoral head pathology.

Child↗
PubMed1975

Diagnosis of dyspepsia from data collected by a physician's assistant.

This paper presents a study of the diagnosis of "dyspepsia" in 154 patients based on data collected at their initial outpatient attendance via an interview with a non-medically qualified physician's assistant. The reactions of patients to this type of interview were favourable, and the data recorded were as reliable as those recorded by clinicians. We conclude (1) that the data recorded by the physician's assistant are valuable diagnostically; (2) where these cannot be collected by a qualified physician, this task may be delegated to a non-medically qualified person; but (3) this interview should augment and not replace the traditional clinical interview.

Diagnosis, Computer-Assisted↗
PubMed1979

[A self-administered questionnaire applied to 30,000 teen-agers. Assessment of this method of data collection (author's transl)].

In the French "département" of "Bas-Rhin", about 30,000 teen-agers filled in a self-administered questionnaire about respiratory symptoms, in spring 1976. The assessment of this method of data collection shows a very high response rate (99,7 p. cent). If we consider as incomplete all the questionnaires having at least one unanswered question concerning respiratory symptoms or smoking, 55,8 p. cent of them were incomplete, but for most questions non-response rate was lower than 4 p. cent. The consistency of answers was very satisfactory (mean inconsistency rate: 0,39 p. cent) and the likelihood of answers was proved.

Adolescent↗
PubMed1978

[Errors in clinical data collection (author's transl)].

In the design of clinical trials the collection of the routine data is often not sufficiently defined. Numerous mistakes may occur in the registration of blood pressure, heart rate, body temperature, body weight, circumferences. The mistakes have to be prevented by standardization. In particular the intake of drugs especially during long-term medication has to be supervised.

Body Height↗
PubMed1976

Physiological data collection system for field use in trained military dogs.

This research program resulted in synthesis of a complete system for "in the field" collection of dynamic physiologic data from trained military dogs. Sensors and sensor implantation techniques were developed for arterial blood pressure, electroencephalogram, electrooculogram, temperature, and respiratory rate monitoring in dogs under strenuous field conditions. A data acquisition system was developed that provided the capability for recording this physiologic data for later computer analysis, and computer programs were written for evaluation of the data. In the final evaluation of the system, two factors indicated a need for additional refinement: (1) that of reducing EEG signal artifact due to cable capacitance and, (2) signal jitter caused by the casette recorder.

Analog-Digital Conversion↗
PubMed1977

Adequacy of survey data collected from substitute respondents.

This study examined interview data on personal habits (smoking, drinking and dietary histories) when collected from two sources. A sample of 300 pairs of subjects (mostly husbands and wives) was obtained from an ongoing health survey in Hawaii, and both members of each pair were interviewed separately about the habits of the husband. Care was taken that the members of each pair had no opportunity to communicate with each other between the start and completion of both interviews. The results showed remarkably good agreement in overall mean values between the two groups of respondents. In general, approximately 75% of the pairs agreed within acceptable limits on most items. There was no clear association of the degree of agreement within pairs with a variety of characteristics of the surrogate group, including age, race, level of education, family income, and duration of residence of proportion of meals eaten together with the subject. These findings are encouraging for the use of surrogate respondents in studies of personal habits where direct interviews are not always feasible, or where the use of such substitutes can improve the reppresentativeness and size of the sample.

Adolescent↗