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Journal of Registry Management 2018The Centers for Disease Control and Prevention initiated an economic analysis of the National Program of Cancer Registries (NPCR) in 2005 to estimate the true economic...
The Centers for Disease Control and Prevention initiated an economic analysis of the National Program of Cancer Registries (NPCR) in 2005 to estimate the true economic costs of operating a cancer registry, identify costs associated with registry activities, and evaluate the factors that may affect the efficiency of registry operations. We developed a Web-based NPCR cost assessment tool (NPCR-CAT) to collect activity-based cost data from all 48 NPCR registries. We collected data on registry funding, actual expenditures, and factors that may affect the efficiency of operating a central cancer registry. Key lessons learned during data collection and analysis include the importance of working closely with registry staff and balancing the need for standardized data elements with an understanding of individual registry characteristics. Our findings and lessons can be adapted to develop costing tools for other surveillance systems and cancer control programs, both domestically and internationally.
Topics: Centers for Disease Control and Prevention, U.S.; Cost-Benefit Analysis; Costs and Cost Analysis; Data Collection; Government Programs; Humans; Neoplasms; Program Development; Registries; United States
PubMed: 31533128
DOI: No ID Found -
Qualitative Health Research Apr 2014Researchers new to online qualitative health research frequently have questions about how to transfer knowledge of offline data collection to an online environment. In...
Researchers new to online qualitative health research frequently have questions about how to transfer knowledge of offline data collection to an online environment. In this article, we present best-practice guidelines derived from the literature and our experience to help researchers determine if an online qualitative study design is appropriate for their research project and, if so, when to begin data collection with a hard-to-reach population. Researchers should reflect on administrative, population, and data collection considerations when deciding between online and offline data collection. Decisions must be made regarding whether to conduct interviews or focus groups, to collect data using asynchronous or synchronous methods, and to use only text or to incorporate visual media. Researchers should also reflect on human subjects, recruitment, research instrumentation, additional data collection, and public relations considerations when writing protocols to guide the research team's response to various situations. Our recommendations direct researchers' reflection on these considerations.
Topics: Data Collection; Female; Focus Groups; Health; Humans; Internet; Male; Patient Selection; Practice Guidelines as Topic; Qualitative Research
PubMed: 24623662
DOI: 10.1177/1049732314524635 -
Neurological Research May 2014Data drive the analyses of any ischemic stroke trial, culminating in the main results and potential next steps. The distinct purpose of a given trial, advancing a novel... (Review)
Review
Data drive the analyses of any ischemic stroke trial, culminating in the main results and potential next steps. The distinct purpose of a given trial, advancing a novel treatment or examining routine clinical practice, determines the nature of essential data elements. Information gathering for an effective trial depends on ample data, adequate infrastructure, and properly planned statistical analyses. This review highlights the fact that successful future trials will require appropriate expertise that extends far beyond these basic considerations in order to move from identification of basic risk factors that are associated with outcomes to knowledge of pathophysiology and causation of outcomes. Efficient and productive data collection by local and central sites must be complemented by expert core lab adjudications. Source data archiving, including complete DICOM imaging datasets or biological specimens, are needed to maximize the potential for study interpretation and financial investment. Standard terminology, such as common data elements and definitions, enhance study comparisons. Screening logs attest to generalizability of a study. Real-time data transmission and core lab evaluation will be critical to guide adaptive trial design. Despite the overwhelming focus on the intervention in a particular treatment trial, individual pathophysiology must be considered. Understanding individual subject characteristics is a tenet of the coming era of precision stroke care, where the course of a given patient and eventual outcome is paramount. This will require a new approach to data collection in clinical trials.
Topics: Brain Ischemia; Clinical Trials as Topic; Common Data Elements; Data Collection; Humans; Stroke
PubMed: 24641718
DOI: 10.1179/1743132814Y.0000000357 -
Annual Review of Clinical Psychology 2013Researchers use multiple informants' reports to assess and examine behavior. However, informants' reports commonly disagree. Informants' reports often disagree in their... (Review)
Review
Researchers use multiple informants' reports to assess and examine behavior. However, informants' reports commonly disagree. Informants' reports often disagree in their perceived levels of a behavior ("low" versus "elevated" mood), and examining multiple reports in a single study often results in inconsistent findings. Although researchers often espouse taking a multi-informant assessment approach, they frequently address informant discrepancies using techniques that treat discrepancies as measurement error. Yet, recent work indicates that researchers in a variety of fields often may be unable to justify treating informant discrepancies as measurement error. In this review, the authors advance a framework (Operations Triad Model) outlining general principles for using and interpreting informants' reports. Using the framework, researchers can test whether or not they can extract meaningful information about behavior from discrepancies among multiple informants' reports. The authors provide supportive evidence for this framework and discuss its implications for hypothesis testing, study design, and quantitative review.
Topics: Behavior; Data Collection; Humans; Models, Statistical; Research Design
PubMed: 23140332
DOI: 10.1146/annurev-clinpsy-050212-185617 -
Pharmacoepidemiology and Drug Safety Jun 2019UK primary care provides a rich data source for research. The impact of proposed data collection restrictions is unknown. This study aimed to assess the impact of...
PURPOSE
UK primary care provides a rich data source for research. The impact of proposed data collection restrictions is unknown. This study aimed to assess the impact of restricting the scope of electronic health record (EHR) data collection on the ability to conduct research. The study estimated the consequences of restricted data collection on published Clinical Practice Research Datalink studies from high impact journals or referenced in clinical guidelines.
METHODS
A structured form was used to systematically analyse the extent to which individual studies would have been possible using a database with data collection restrictions in place: (1) retrospective collection of specified diseases only; (2) retrospective collection restricted to a 6- or 12-year period; (3) prospective and retrospective collection restricted to non-sensitive data. Outcomes were categorised as unfeasible (not reproducible without major bias); compromised (feasible with design modification); or unaffected.
RESULTS
Overall, 91% studies were compromised with all restrictions in place; 56% studies were unfeasible even with design modification. With restrictions on diseases alone, 74% studies were compromised; 51% were unfeasible. Restricting collection to 6/12 years had a major impact, with 67 and 22% of studies compromised, respectively. Restricting collection of sensitive data had a lesser but marked impact with 10% studies compromised.
CONCLUSION
EHR data collection restrictions can profoundly reduce the capacity for public health research that underpins evidence-based medicine and clinical guidance. National initiatives seeking to collect EHRs should consider the implications of restricting data collection on the ability to address vital public health questions.
Topics: Confidentiality; Data Collection; Databases, Factual; Electronic Health Records; Evidence-Based Medicine; Feasibility Studies; Humans; Primary Health Care; Reproducibility of Results; Research Design; United Kingdom
PubMed: 30993808
DOI: 10.1002/pds.4765 -
The Journal of Pain Jul 2018Self-reported pain intensity assessments are central to chronic pain research. Ecological momentary assessment (EMA) methodologies are uniquely positioned to collect...
UNLABELLED
Self-reported pain intensity assessments are central to chronic pain research. Ecological momentary assessment (EMA) methodologies are uniquely positioned to collect these data, and are indeed being used in the field. However, EMA protocols are complex, and many decisions are necessary in the design of EMA research studies. A systematic literature review identified 105 articles drawing from 62 quantitative EMA research projects examining pain intensity in adult chronic pain patients. Study characteristics were tabulated to summarize and describe the use of EMA, with an emphasis placed on various dimensions of decision-making involved in executing EMA methodologies. Most identified studies considered within-person relationships between pain and other variables, and a few examined interventions on chronic pain. There was a trend toward the use of smartphones as EMA data collection devices more recently, and completion rates were not reported in nearly one third of studies. Pain intensity items varied widely with respect to number of scale points, anchor labels, and length of reporting period; most used numeric rating scales. Recommendations are provided for reporting to improve reproducibility, comparability, and interpretation of results, and for opportunities to clarify the importance of design decisions.
PERSPECTIVE
Studies that use EMA methodologies to assess pain intensity are heterogeneous. Aspects of protocol design, including data input modality and pain item construction, have the potential to influence the data collected. Thorough reporting on design features and completion rates therefore facilitates reproducibility, comparability, and interpretation of study results.
Topics: Chronic Pain; Data Collection; Ecological Momentary Assessment; Humans; Pain Measurement; Self Report
PubMed: 29371113
DOI: 10.1016/j.jpain.2018.01.006 -
BMC Cancer Nov 2018A minority of European countries have participated in international comparisons with high level data on lung cancer. However, the nature and extent of data collection...
BACKGROUND
A minority of European countries have participated in international comparisons with high level data on lung cancer. However, the nature and extent of data collection across the continent is simply unknown, and without accurate data collection it is not possible to compare practice and set benchmarks to which lung cancer services can aspire.
METHODS
Using an established network of lung cancer specialists in 37 European countries, a survey was distributed in December 2014. The results relate to current practice in each country at the time, early 2015. The results were compiled and then verified with co-authors over the following months.
RESULTS
Thirty-five completed surveys were received which describe a range of current practice for lung cancer data collection. Thirty countries have data collection at the national level, but this is not so in Albania, Bosnia-Herzegovina, Italy, Spain and Switzerland. Data collection varied from paper records with no survival analysis, to well-established electronic databases with links to census data and survival analyses.
CONCLUSION
Using a network of committed clinicians, we have gathered validated comparative data reporting an observed difference in data collection mechanisms across Europe. We have identified the need to develop a well-designed dataset, whilst acknowledging what is feasible within each country, and aspiring to collect high quality data for clinical research.
Topics: Data Collection; Databases, Factual; Europe; Humans; Lung Neoplasms; Medical Oncology
PubMed: 30458807
DOI: 10.1186/s12885-018-5009-y -
PLoS Medicine Apr 2010Colin Mathers and Ties Boerma discuss three research articles in that address the measurement and analysis of child and adult mortality data collected through death...
Colin Mathers and Ties Boerma discuss three research articles in that address the measurement and analysis of child and adult mortality data collected through death registration, censuses, and household surveys.
Topics: Adult; Child; Child Mortality; Data Collection; Humans; Mortality; Population Dynamics; Registries
PubMed: 20405053
DOI: 10.1371/journal.pmed.1000265 -
Obesity Research Feb 2005To evaluate the existence and efficacy of data collection systems for weight loss surgery (WLS) and establish evidence-based guidelines for the development of a... (Review)
Review
OBJECTIVE
To evaluate the existence and efficacy of data collection systems for weight loss surgery (WLS) and establish evidence-based guidelines for the development of a statewide WLS registry in Massachusetts.
RESEARCH METHODS AND PROCEDURES
We conducted two systematic searches of English language literature in MEDLINE. The first was on data collection registries related to WLS; the second was an expanded search encompassing other surgical fields (e.g., cardiac and thoracic surgery) and registries (i.e., cancer). Fourteen articles were found to be pertinent. Data were extracted, and evidence categories were assigned according to a grading system based on established evidence-based models. Recommendations were derived from these literature reviews and expert opinion.
RESULTS
This task group found that there are no standardized data collection systems for WLS in Massachusetts (or any other states) and no mandated reporting of WLS-specific outcomes. We described existing WLS databases and systems in other surgical fields. Recommendations focused on the importance and feasibility of data collection for WLS and the need to conduct a pilot study and explore options for creating a statewide WLS database.
DISCUSSION
A statewide WLS data collection system would optimize patient care by enabling the collection, analysis, and dissemination of best practice data. A broad-based effort is needed to meet challenges involved in defining and implementing such a system.
Topics: Data Collection; Digestive System Surgical Procedures; Evidence-Based Medicine; Humans; MEDLINE; Registries; Treatment Outcome; Weight Loss
PubMed: 15800287
DOI: 10.1038/oby.2005.40 -
Journal of Epidemiology and Community... Jan 2003To identify and describe advantages, challenges, and ethical considerations of web based behavioural data collection. (Review)
Review
OBJECTIVE
To identify and describe advantages, challenges, and ethical considerations of web based behavioural data collection.
METHODS
This discussion is based on the authors' experiences in survey development and study design, respondent recruitment, and internet research, and on the experiences of others as found in the literature.
RESULTS
The advantages of using the world wide web to collect behavioural data include rapid access to numerous potential respondents and previously hidden populations, respondent openness and full participation, opportunities for student research, and reduced research costs. Challenges identified include issues related to sampling and sample representativeness, competition for the attention of respondents, and potential limitations resulting from the much cited "digital divide", literacy, and disability. Ethical considerations include anonymity and privacy, providing and substantiating informed consent, and potential risks of malfeasance.
CONCLUSIONS
Computer mediated communications, including electronic mail, the world wide web, and interactive programs will play an ever increasing part in the future of behavioural science research. Justifiable concerns regarding the use of the world wide web in research exist, but as access to, and use of, the internet becomes more widely and representatively distributed globally, the world wide web will become more applicable. In fact, the world wide web may be the only research tool able to reach some previously hidden population subgroups. Furthermore, many of the criticisms of online data collection are common to other survey research methodologies.
Topics: Behavioral Research; Data Collection; Humans; Internet; Research Personnel
PubMed: 12490652
DOI: 10.1136/jech.57.1.68