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Worldviews on Evidence-based Nursing Dec 2020Preterm and sick infants benefit from parent-infant closeness and family-centered care (FCC) in neonatal intensive care units (NICUs). Prospective and feasible tools are...
BACKGROUND
Preterm and sick infants benefit from parent-infant closeness and family-centered care (FCC) in neonatal intensive care units (NICUs). Prospective and feasible tools are needed to measure these care practices to facilitate their implementation.
AIMS
To describe the development process of three prospective data collection tools that measure parent-infant closeness and the quality of FCC.
METHODS
Data collection tools were developed in an iterative process consisting of three development cycles. Feedback was gathered from parents, staff, and researchers. The first stages of development focused on the content validity, appropriate scaling, and optimization of the response rate of these tools.
RESULTS
The study included parents of 490 infants and the nurses working at bedside in 15 NICUs in six countries. The Parent-Infant Closeness Diary was developed to measure the daily duration of parental presence, holding, and skin-to-skin contact. The optimal duration for daily diaries was 14 consecutive days to maintain a good response rate. Parents provided reliable documentation of parent-infant closeness. Digital FCC tools covering the nine aspects of FCC for parents and nurses were developed to measure the quality of FCC. Participants provided answers on a 7-point Likert scale. Parents' response rates remained >50% for approximately 1 month, and the nurses' mean response rate was 55% (39%-87%) for the 3-month study period.
LINKING EVIDENCE TO ACTION
These new tools provide prospective daily information to aid the implementation of parent-infant closeness and the quality of FCC in NICU in different countries. They can be used to study and evaluate the implementation of these clinical practices NICUs in an international context.
Topics: Data Collection; Family Relations; Female; Humans; Infant; Infant, Newborn; Intensive Care Units, Neonatal; Male; Parent-Child Relations; Parenting; Prospective Studies; Psychometrics
PubMed: 33210818
DOI: 10.1111/wvn.12475 -
American Journal of Surgery May 2021
Topics: Adolescent; Adult; COVID-19; Data Collection; Female; Focus Groups; Humans; Male; Middle Aged; Pandemics; Qualitative Research; Videoconferencing; Young Adult
PubMed: 33070983
DOI: 10.1016/j.amjsurg.2020.10.009 -
International Journal of Radiation... Jul 2016Big Data in healthcare promise to answer real world questions that can be difficult to address with randomized clinical trials. In this perspective article, we analyze...
Big Data in healthcare promise to answer real world questions that can be difficult to address with randomized clinical trials. In this perspective article, we analyze five current Big Data informatics challenges of (1) data volume, (2) research oversight by Institutional Review Boards, (3) semantic data integration (4) data formats, and (5) access to knowledge bases from a biomedical informatics perspective. After briefly describing each challenge, we discuss examples of how are being addressed today. With the ever increasing number of Big Data healthcare repositories, the emphasis is shifting from mere data aggregation to advanced data transformation and analysis.
Topics: Data Collection; Data Mining; Data Warehousing; Databases, Factual; Databases, Genetic; Ethics Committees, Research; Forecasting; Information Storage and Retrieval
PubMed: 26797535
DOI: 10.1016/j.ijrobp.2015.10.060 -
BMC Health Services Research Apr 2021The International Classification of Diseases (ICD) is the reference standard for reporting diseases and health conditions globally. Variations in ICD use and data...
BACKGROUND
The International Classification of Diseases (ICD) is the reference standard for reporting diseases and health conditions globally. Variations in ICD use and data collection across countries can hinder meaningful comparisons of morbidity data. Thus, we aimed to characterize ICD and hospital morbidity data collection features worldwide.
METHODS
An online questionnaire was created to poll the World Health Organization (WHO) member countries that were using ICD. The survey included questions focused on ICD meta-features and hospital data collection systems, and was distributed via SurveyMonkey using purposive and snowball sampling. Accordingly, senior representatives from organizations specialized in the topic, such as WHO Collaborating Centers, and other experts in ICD coding were invited to fill out the survey and forward the questionnaire to their peers. Answers were collated by country, analyzed, and presented in a narrative form with descriptive analysis.
RESULTS
Responses from 47 participants were collected, representing 26 different countries using ICD. Results indicated worldwide disparities in the ICD meta-features regarding the maximum allowable coding fields for diagnosis, the definition of main condition, and the mandatory type of data fields in the hospital morbidity database. Accordingly, the most frequently reported answers were "reason for admission" as main condition definition (n = 14), having 31 or more diagnostic fields available (n = 12), and "Diagnoses" (n = 26) and "Patient demographics" (n = 25) for mandatory data fields. Discrepancies in data collection systems occurred between but also within countries, thereby revealing a lack of standardization both at the international and national level. Additionally, some countries reported specific data collection features, including the use or misuse of ICD coding, the national standards for coding or lack thereof, and the electronic abstracting systems utilized in hospitals.
CONCLUSIONS
Harmonizing ICD coding standards/guidelines should be a common goal to enhance international comparisons of health data. The current international status of ICD data collection highlights the need for the promotion of ICD and the adoption of the newest version, ICD-11. Furthermore, it will encourage further research on how to improve and standardize ICD coding.
Topics: Hospitals; Humans; International Classification of Diseases; Morbidity; Surveys and Questionnaires; World Health Organization
PubMed: 33827567
DOI: 10.1186/s12913-021-06302-w -
Medecine Sciences : M/S Oct 2018Human biological samples are key resources in unravelling physiopathological factors underlying diseases and influencing their outcome. By making use of these resources,... (Review)
Review
Human biological samples are key resources in unravelling physiopathological factors underlying diseases and influencing their outcome. By making use of these resources, genomics, proteomics and molecular imaging techniques have achieved unprecedented progress in the past decade. The development of genomics platforms, molecular imaging as well as bioinformatics allowed a significant development of the biomarkers field thus realizing significant advances towards personalized medicine. The exponential increase of data, their complexity, the necessity of their integration for analysis require the development of appropriate infrastructures. These latter should integrate experts from different fields as well as an optimal organisation of biobanks including novel access and exchange rules for biological material and data.
Topics: Animals; Biological Specimen Banks; Data Collection; High-Throughput Screening Assays; Humans; Precision Medicine
PubMed: 30451660
DOI: 10.1051/medsci/2018203 -
Lancet (London, England) Aug 2022
Topics: Cost of Illness; Data Collection; Humans; Iran
PubMed: 35964605
DOI: 10.1016/S0140-6736(22)01336-8 -
Global Health Action 2017
Topics: Data Collection; Global Health; Health Status Indicators; Humans; National Health Programs
PubMed: 28532310
DOI: 10.1080/16549716.2017.1299978 -
Cancer Epidemiology Dec 2016This article reports on the methods and framework we have developed to guide economic evaluation of noncommunicable disease registries.
BACKGROUND
This article reports on the methods and framework we have developed to guide economic evaluation of noncommunicable disease registries.
METHODS
We developed a cost data collection instrument, the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool), based on established economics methods We performed in-depth case studies, site visit interviews, and pilot testing in 11 registries from multiple countries including India, Kenya, Uganda, Colombia, and Barbados to assess the overall quality of the data collected from cancer and cardiovascular registries.
RESULTS
Overall, the registries were able to use the IntRegCosting Tool to assign operating expenditures to specific activities. We verified that registries were able to provide accurate estimation of labor costs, which is the largest expenditure incurred by registries. We also identified several factors that can influence the cost of registry operations, including size of the geographic area served, data collection approach, local cost of living, presence of rural areas, volume of cases, extent of consolidation of records to cases, and continuity of funding.
CONCLUSION
Internal and external registry factors reveal that a single estimate for the cost of registry operations is not feasible; costs will vary on the basis of factors that may be beyond the control of the registries. Some factors, such as data collection approach, can be modified to improve the efficiency of registry operations. These findings will inform both future economic data collection using a web-based tool and cost and cost-effectiveness analyses of registry operations in low- and middle-income countries (LMICs) and other locations with similar characteristics.
Topics: Cardiovascular Diseases; Cost-Benefit Analysis; Costs and Cost Analysis; Data Collection; Humans; Neoplasms; Registries
PubMed: 27726980
DOI: 10.1016/j.canep.2016.10.003 -
Journal of Radiation Research Mar 2018Patient- and provider-reported outcomes are recognized as important in evaluating quality of care, guiding health care policy, comparative effectiveness research, and...
Patient- and provider-reported outcomes are recognized as important in evaluating quality of care, guiding health care policy, comparative effectiveness research, and decision-making in radiation oncology. Combining patient and provider outcome data with a detailed description of disease and therapy is the basis for these analyses. We report on the combination of technical solutions and clinical process changes at our institution that were used in the collection and dissemination of this data. This initiative has resulted in the collection of treatment data for 23 541 patients, 20 465 patients with provider-based adverse event records, and patient-reported outcome surveys submitted by 5622 patients. All of the data is made accessible using a self-service web-based tool.
Topics: Data Collection; Humans; Patient Reported Outcome Measures; Time Factors; Treatment Outcome
PubMed: 29538757
DOI: 10.1093/jrr/rry013 -
Acta Crystallographica. Section D,... May 2018Macromolecular crystallography is now a mature and widely used technique that is essential in the understanding of biology and medicine. Increases in computing power...
Macromolecular crystallography is now a mature and widely used technique that is essential in the understanding of biology and medicine. Increases in computing power combined with robotics have not only enabled large numbers of samples to be screened and characterized but have also enabled better decisions to be taken on data collection itself. This led to the development of MASSIF-1 at the ESRF, the first beamline in the world to run fully automatically while making intelligent decisions taking user requirements into account. Since opening in late 2014, the beamline has processed over 42 000 samples. Improvements have been made to the speed of the sample-handling robotics and error management within the software routines. The workflows initially put into place, while highly innovative at the time, have been expanded to include increased complexity and additional intelligence using the information gathered during characterization; this includes adapting the beam diameter dynamically to match the diffraction volume within the crystal. Complex multi-position and multi-crystal data collections have now also been integrated into the selection of experiments available. This has led to increased data quality and throughput, allowing even the most challenging samples to be treated automatically.
Topics: Algorithms; Crystallography, X-Ray; Data Collection; Macromolecular Substances; Receptors, G-Protein-Coupled; Specimen Handling; Synchrotrons; Time Factors; Workflow
PubMed: 29717714
DOI: 10.1107/S2059798318003728