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PubMed1990

Data collection for an obstetric department.

A well-designed computerized data collection system allows an accurate, complete data-set to be compiled for all pregnant women. It should be able to produce all the documentation necessary for pregnancy care, with minimum delay, and avoid repetitive data entry. Data is stored on computer on the back of operational tasks so that it may be subsequently used for audit. In addition it may be used for research purposes. Patient care can be improved if the computer is programmed to react to certain items being entered by requesting further relevant data-items. This therefore acts as a teaching method. A further extension of this is to use the data to help reach a diagnosis and thus suggest a logical management. A computerized data collection system cannot bring order out of chaos. Before introducing one there must be well-stated objectives of what is required from it. It must be clearly stated what is to be collected by whom and for what purpose. Apart from the capital outlay there may be a need to set money aside for revenue purposes for additional staff involved in maintaining the system. If a large system is being introduced then this will have considerable implications with regard to the work done by some staff, and job descriptions may need renegotiation--an aspect usually overlooked.

Data Collection↗
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↗
PubMed1991

The course of schizophrenia: some remarks on a yet unsolved problem of retrospective data collection.

The retrospective assessment of symptoms and syndromes is a basic measure in research of the longitudinal course of schizophrenia. In spite of its importance there have been few studies evaluating the standard of quality of instruments for retrospective data collection. Combining retrospectively and cross-sectionally collected data on schizophrenic symptomatology in a cohort study over a period of 5 years revealed a significant underestimation of symptoms when assessed in retrospect. The need for studies on the validity of instruments for the retrospective assessment of symptoms is stressed.

Delusions↗
PubMed1991

Breast cancer data collection for surgical audit.

Data are available about the mortality, the incidence, the stage, the survival, and the treatment of breast cancer. In this country mortality data are published by the OPCS and HIPE and evidence exists to show that there is a considerable shortfall in both these sources. The incidence of breast cancer is recorded by the Regional Cancer Registries and published by OPCS. The registries supply OPCS with a minimum data set which does not include the stage of the disease, which is important, and does include the quadrant, which is not. Audit shows marked regional variations in completeness of registration. International comparisons with Scandinavia are unfavourable and show what can be achieved. Patients who develop breast cancer but do not die from it may be cured. The discrepancy between incidence and mortality, which varies both geographically and historically, should therefore provide a valuable insight into changing survival, but does not do so because the data are unreliable. Wide variations in survival figures in the medical literature are probably due to variations in staging conventions rather than different treatments. It is clear that cancer stages carry a more favourable prognosis, but it still cannot be proved that earlier diagnosis in a particular individual prolongs the life of that individual. This unproven hypothesis is the rationale for mammographic screening. Data on treatment in hospitals do not link diagnosis to operation, so that it is impossible to separate operations for benign breast disease from those for cancer. The OPCS classification of operations is complex with many open-ended choices. Doctors do not participate in the coding process and clerks cannot make up for this. Radiotherapy and chemotherapy data are not collected nationally and the four regional registries who do collect it also rely on their clerks' interpretation of medical notes. Data on the use of tamoxifen are consistent and of high quality.An extensive data gathering mechanism is in place for breast cancer. A huge body of information exists about the disease which should form a valuable database. The poor quality of this information reduces its usefulness. It is the responsibility of doctors to agree on a data set and to ensure its collection. They do it in Scandinavia.

Breast Neoplasms↗
PubMed1992

There is more than one way to collect data for linkage analysis. What a study of epilepsy can tell us about linkage strategy for psychiatric disease.

The most popular strategy for finding genes in psychiatric diseases has been to focus on large pedigrees with many affected members. While this strategy has sound advantages, it also has drawbacks that have seldom been addressed. The strategy of using smaller families also has its place in a linkage analysis. To illustrate the point, I discuss herein the successful search for a gene for another common complex disease, namely, idiopathic primary generalized epilepsy. There, investigators in the Los Angeles (Calif) Epilepsy Program used mostly nuclear families who were chosen through a proband with highly specific characteristics. An independent study, using a different strategy but one still focused on small families, then confirmed the linkage. However, investigators of both epilepsy projects put much care into determining which clinical characteristics would be used to define the index cases. The implications for the study of psychiatric disease are as follows: (1) careful attention must be paid to clinical presentation, and (2) there is room for both large-pedigree and small-family strategies in designing linkage studies.

Data Collection↗
PubMedDate not supplied

Collecting data on pregnancy loss: a review of evidence from the World Fertility Survey.

Estimates of levels and differentials of pregnancy loss are presented for 40 developing countries participating in the World Fertility Survey (WFS) program. Judged against agreed-upon levels of spontaneous loss in human populations, WFS surveys measured from 50 to 80 percent of recognizable losses. The coverage of induced abortions appears to be much worse. Consistent with data from other sources and settings, the probability of loss is strongly correlated with maternal demographic characteristics: age, pregnancy order, pregnancy spacing, and pregnancy loss history. Despite incomplete coverage, the WFS data on pregnancy loss provide considerable, and largely unexploited, insight on the dynamics of the reproductive career.

Data Collection↗
PubMed1992

Improving dental epidemiologic data collection with computers.

A computerized dental data recording system (DDRS) was developed for the New England Elder Dental Study to improve data quality and increase field staff efficiency. The DDRS displays video screens similar to traditional paper forms to record data on coronal and root caries, dentate and denture status, subacute bacterial endocarditis screening, gingival bleeding, calculus, and periodontal attachment level. DDRS provides facilities for date and exam-component time tracking, on-line contextual comments, random record retrieval, editing, data backup, and data output in various data formats. This study compared the DDRS with a paper-form system for data entry accuracy. Dental caries and periodontal disease measurement data from 38 subjects were recorded on paper forms and independently entered using DDRS. The DDRS identified 150 illogical data errors, 39 inconsistent data errors, 7 invalid data and 34 miscellaneous data errors. Four technicians with field experience using both paper forms and DDRS reported time savings using DDRS in the field. DDRS has the potential for additional time savings by minimizing the time for data coding, cleaning, and management. Results demonstrate that DDRS could improve the quality of oral epidemiologic data by mandating strict adherence to protocols, preventing errors, and increasing field efficiency.

Computers↗
PubMed1991

A model for multidisciplinary data collection for cervical metastasis.

A system for multidisciplinary data collection for metastatic neck disease is discussed. Information from 87 neck dissections and 3218 lymph nodes is reported to illustrate the strength of the model. Clinical (endoscopic) assessment under general anesthesia, surgical assessment during the neck dissection, and radiographic (computed tomographic scan) assessment were compared with the pathological evaluation. All disciplines stratified the necks by region and node size. This model provides an effective stratagem for multi-institutional studies.

Data Collection↗
PubMed1990

[Proposal for a data collection system for colposcopy services].

A computerized system for colpocytologic data collection and filing, is presented. A descriptive and easy to elaborate recording of anamnestical data and examination findings is achieved using two correlated files. Step by step filing is obtained by multichoice scheme which progressively appears on the screen.

Colposcopy↗
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↗
PubMed1992

Computer-assisted drug data collection.

Computerized systems for recording information about medication prescribing and use are important for studies in health services and pharmacoepidemiology. Such systems, if properly designed, can facilitate analysis as well as data collection. Although drug information systems exist for pharmacy service delivery applications, there are currently no descriptions of systems developed primarily for research applications in this area. This paper describes a computerized data collection system, developed for researchers, usable on portable equipment, and containing error checking features; the system has been extensively tested in over 850 study subjects taking part in a study of medication use in nursing homes that examines the impact of educational interventions for doctors and nurses on prescribing practices.

Clinical Pharmacy Information Systems↗
PubMed1992

Fully three-dimensional reconstruction from data collected on concentric cubes in Fourier space: implementation and a sample application to MRI.

An algorithm is proposed for rapid and accurate reconstruction from data collected in Fourier space at points arranged on a grid of concentric cubes. The Fourier transform of the object to be reconstructed is decomposed into the sum of three functions by subdividing its domain into three non-overlapping mutually orthogonal double pyramids. Each of the three functions is zero-valued outside one of the double pyramids and has values inside that double pyramid which are the same as those of Fourier transform of the object to be reconstructed at the same points. Inverse Fourier transforms of these individual functions can be calculated using the chirp z-transform. The outputs of these inverse transforms for the three functions are estimates of their values at points of the same rectangular grid. The function to be reconstructed is estimated for this grid by adding together the three inverse transforms. The whole process has computational complexity of the same order as required for the 3D fast Fourier transform and so (for medically relevant sizes of the data set) it is faster than backprojection into the same size rectangular grid. The design of the algorithm ensures that no interpolations are needed, in contrast to methods involving backprojection with their unavoidable interpolations. As an application, a 3D data collection method for MRI has been designed which directly samples the Fourier transform of the object to be reconstructed on concentric cubes as needed for the algorithm.

Algorithms↗
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↗
PubMed1991

The Pregnancy Risk Assessment Monitoring System: design, questionnaire, data collection and response rates. PRAMS Working Group.

The birth certificate, the primary tool for population-based surveillance of the condition of infants at birth and maternal status during pregnancy, provides little data about maternal behaviour during pregnancy. To collect data on maternal behaviours that influence pregnancy outcome, we implemented the Pregnancy Risk Assessment Monitoring System in seven states. For this population-based surveillance, new mothers were sampled from birth certificates 2 to 6 months after delivery and contacted by mail; follow-up of nonrespondents was by telephone. Participants completed a 10-page questionnaire. Stratification permitted over-sampling of women with adverse pregnancy outcomes. Among 10,563 women sampled during 1988 and 1989, stratum-specific response rates ranged from 30% to 89%. In 11 of the 28 strata, response rates were greater than 70%. Response rates varied considerably between states. Rates were lower for Black mothers, mothers of low birthweight infants, unmarried mothers and mothers with less than 12 years of education. Active refusal to participate and undelivered mail occurred infrequently. Mail and telephone surveillance of new mothers can yield adequate response rates in selected population groups. Trials of alternative approaches to enhancing response among Black and disadvantaged mothers, such as additional mailings or post-partum in-hospital recruitment, are needed.

Black or African American↗