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Health Technology Assessment... May 2012Many studies in health sciences research rely on collecting participant-reported outcomes and attention is increasingly being paid to the mode of data collection.... (Review)
Review
BACKGROUND
Many studies in health sciences research rely on collecting participant-reported outcomes and attention is increasingly being paid to the mode of data collection. Consideration needs to be given to the validity of response via different modes and the impact that choice of mode might have on study conclusions.
OBJECTIVES
(1) To provide an overview of the theoretical models of survey response and how they relate to health research; (2) to review all studies comparing two modes of administration for subjective outcomes and assess the impact of mode of administration on response quality; (3) to explore the impact of findings for key identified health-related measures; and (4) to inform the analysis of multimode studies.
DATA SOURCES
A broad range of databases (for example EMBASE, PsychINFO, MEDLINE, EconLit, SPORTDiscus, etc.) were chosen to allow as comprehensive a selection as possible, and they were searched up until the end of 2004.
REVIEW METHODS
The abstracts were reviewed against inclusion/exclusion criteria. Full papers were retrieved for all selected abstracts and then screened again using more detailed inclusion criteria related to the measures used. Papers that were still included were reviewed in full and detailed data extracted. At each stage, abstracts or papers were reviewed by a single reviewer.
RESULTS
The search strategy identified 39,253 unique references, of which 2156 were considered as full papers, with 381 finally included in the review. Two features of mode were clearly associated with bias in response; however, none of the features of mode was associated with changes in precision. How the measure was administered, by an interviewer or by the person themselves, was highly significantly associated with bias (p < 0.001). A difference in sensory stimuli was also significant (p = 0.03). When both of these were present the average overall bias was < 1 point on a percentage scale. In terms of mediating factors, there was some suggestion that there was an interaction between both telephone and computer for data collection and date of publication, supporting the theory that differences disappear as new technologies become commonplace. Single-item measures were also related to greater degrees of bias than multi-item scales (p = 0.01). Individual analysis of the Short Form questionnaire-36 items and Minnesota Multiphasic Personality Inventory (MMPI) showed a varied pattern across the different subscales, with conflicting results between the two types of study. None of the MMPI measures used to detect deviant responding showed a relationship with the mode features tested. The limits of agreement analysis showed how variable measures were between modes at an individual rather than a group mean level.
LIMITATIONS
The search strategy covered the period up to 2004, so any new and emerging technologies were not included. Not all potential mode features were tested and there was limited information on potential mediating factors.
CONCLUSIONS
Researchers need to be aware of the different mode features that could have an impact on their results when selecting a mode of data collection for subjective outcomes. Further mode comparison studies, which manipulate mode features and directly assess impact over time, would be beneficial.
Topics: Confidence Intervals; Data Collection; Health Surveys; Humans; Reproducibility of Results; Research Design; Self Report
PubMed: 22640750
DOI: 10.3310/hta16270 -
Public Health Research & Practice Sep 2015
Topics: Data Collection; Public Health; Statistics as Topic
PubMed: 26536501
DOI: 10.17061/phrp2541539 -
Revista Brasileira de Enfermagem 2015to characterize non-conventional technologies used for data collection of dissertations and theses available in the Catalog of Theses and Dissertations (CEPEn) of the...
OBJECTIVE
to characterize non-conventional technologies used for data collection of dissertations and theses available in the Catalog of Theses and Dissertations (CEPEn) of the Brazilian Nursing Association (ABEn).
METHOD
this is a documentary research, whose data were collected in the catalogs of theses and dissertations available at the ABEn website, from Volumes XIX to XXI. The indicators collected were: academic level; educational institution; year; qualification of the author; setting; non-conventional technology used; type of technology; association with conventional techniques; methodological design; benefits and methodological limitations.
RESULTS
from a total of 6346 studies, only 121 (1.91%) used non-conventional technologies for data collection, representing the fi nal sample of the study.
CONCLUSION
it is concluded that Brazilian Nursing researches still need methodological innovations for data collection.
Topics: Academic Dissertations as Topic; Brazil; Data Collection; Nursing Research
PubMed: 26222170
DOI: 10.1590/0034-7167.2015680212i -
The Journals of Gerontology. Series B,... Nov 2014The second Wave (W2) of the National Social Life, Health, and Aging Project (NSHAP), a nationally representative, longitudinal survey of older adults now between the...
BACKGROUND
The second Wave (W2) of the National Social Life, Health, and Aging Project (NSHAP), a nationally representative, longitudinal survey of older adults now between the ages of 62 and 90, conducted approximately 3,400 interviews. Selected coresidential romantic partners as well as W1 panel nonrespondents were selected for W2. Data collection included in-person questionnaires, up to 15 biomeasures, and a post-interview questionnaire.
METHODS
A proxy questionnaire also collected data on respondents that were deceased or in too poor health to participate in W2. Biomeasure collection included height, weight, hip and waist circumference, blood pressure, heart rate, and preventricular contraction, timed walk and chair stands, smell, saliva collection using a Salivette (cortisol), saliva passive drool in a tube (dehydroepiandrosterone, estradiol, progesterone, testosterone), dried blood spots (Epstein-Barr virus antibody titers, C-reactive protein, glycosylated hemoglobin, hemoglobin, cholesterol, high-density lipoprotein), whole blood in a microtainer (cytokines), urine (creatinine, vasopressin, oxytocin), Oragene (genotype), respondent-administered vaginal swabs (bacterial vaginosis,yeast, and vaginal cell cytology), and Actiwatch (sleep patterns and activity).
RESULTS
Measures, such as response and cooperation rates, are also provided to evaluate design and implementation.
DISCUSSION
This article describes both innovation in the development and implementation of W2 as well as fidelity to W1 study design and data collection procedures.
Topics: Actigraphy; Aged; Aged, 80 and over; Aging; Anthropometry; Data Collection; Female; Health Status; Humans; Interpersonal Relations; Interviews as Topic; Longitudinal Studies; Male; Middle Aged; Quality Control; Surveys and Questionnaires; United States
PubMed: 24939998
DOI: 10.1093/geronb/gbu031 -
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 -
Cancer Epidemiology Dec 2016The Mumbai Cancer Registry is a population-based cancer registry that has been in operation for more than five decades and has successfully initiated and integrated...
BACKGROUND
The Mumbai Cancer Registry is a population-based cancer registry that has been in operation for more than five decades and has successfully initiated and integrated three satellite registries in Pune, Nagpur, and Aurangabad, each covering specific urban populations of the Indian state Maharashtra. Data collectors at the satellites perform data abstraction, but Mumbai carries out all other core registration activities such as data analysis and quality assurance. Each of the three satellite registries follows the same data collection methodology as the main Mumbai Cancer Registry. This study examines the cost of operating the Mumbai and its satellite cancer registries.
METHODS
We modified and used the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool) to collect cost and resource use data for the Mumbai Cancer Registry and three satellites.
RESULTS
Almost 60% of the registration expenditure was borne by the Indian Cancer Society, which hosts the Mumbai Cancer Registry, and more than half of the registry expenditure was related to data collection activities. Across the combined registries, 93% of the expenditure was spent on labor. Overall, registration activities had a low cost per case of 226.10 Indian rupees (or a little less than 4.00 US dollars in 2014 [used average exchange rate in 2014: 1 US $=60 Indian rupees]).
CONCLUSION
The centralization of fixed-cost activities in Mumbai likely resulted in economies of scale in operating the Mumbai and satellite registries, which, together, report on almost 20,000 cancer cases annually. In middle-income countries like India, where financial resources are limited, the operational framework provided by the Mumbai and satellite registries can serve as a model for other registries looking to expand data collection.
Topics: Costs and Cost Analysis; Data Collection; Health Resources; Humans; Incidence; India; Neoplasms; Registries
PubMed: 27726981
DOI: 10.1016/j.canep.2016.10.002 -
American Journal of Public Health Jul 2021To assess the quality of population-level US mortality data in the US Census Bureau Numerical Identification file (Numident) and describe the details of the mortality... (Comparative Study)
Comparative Study
OBJECTIVES
To assess the quality of population-level US mortality data in the US Census Bureau Numerical Identification file (Numident) and describe the details of the mortality information as well as the novel person-level linkages available when using the Census Numident.
METHODS
We compared all-cause mortality in the Census Numident to published vital statistics from the Centers for Disease Control and Prevention. We provide detailed information on the linkage of the Census Numident to other Census Bureau survey, administrative, and economic data.
RESULTS
Death counts in the Census Numident are similar to those from published mortality vital statistics. Yearly comparisons show that the Census Numident captures more deaths since 1997, and coverage is slightly lower going back in time. Weekly estimates show similar trends from both data sets.
CONCLUSIONS
The Census Numident is a high-quality and timely source of data to study all-cause mortality. The Census Bureau makes available a vast and rich set of restricted-use, individual-level data linked to the Census Numident for researchers to use.
PUBLIC HEALTH IMPLICATIONS
The Census Numident linked to data available from the Census Bureau provides infrastructure for doing evidence-based public health policy research on mortality.
Topics: Cause of Death; Censuses; Centers for Disease Control and Prevention, U.S.; Data Collection; Forecasting; Humans; Mortality; United States; Vital Statistics
PubMed: 34314212
DOI: 10.2105/AJPH.2021.306217 -
Value in Health : the Journal of the... Apr 2017The aim of this article was to provide practical guidance in setting up patient registries to facilitate real-world data collection for health care decision making.
Balancing the Optimal and the Feasible: A Practical Guide for Setting Up Patient Registries for the Collection of Real-World Data for Health Care Decision Making Based on Dutch Experiences.
OBJECTIVES
The aim of this article was to provide practical guidance in setting up patient registries to facilitate real-world data collection for health care decision making.
METHODS
This guidance was based on our experiences and involvement in setting up patient registries in oncology in the Netherlands. All aspects were structured according to 1) mission and goals ("the Why"), 2) stakeholders and funding ("the Who"), 3) type and content ("the What"), and 4) identification and recruitment of patients, data handling, and pharmacovigilance ("the How").
RESULTS
The mission of most patient registries is improving patient health by improving the quality of patient care; monitoring and evaluating patient care is often the primary goal ("the Why"). It is important to align the objectives of the registry and agree on a clear and functional governance structure with all stakeholders ("the Who"). There is often a trade off between reliability, validity, and specificity of data elements and feasibility of data collection ("the What"). Patient privacy should be carefully protected, and address (inter-)national and local regulations. Patient registries can reveal unique safety information, but it can be challenging to comply with pharmacovigilance guidelines ("the How").
CONCLUSIONS
It is crucial to set up an efficient patient registry that serves its aims by collecting the right data of the right patient in the right way. It can be expected that patient registries will become the new standard alongside randomized controlled trials due to their unique value.
Topics: Confidentiality; Data Accuracy; Data Collection; Decision Making; Guideline Adherence; Guidelines as Topic; Health Services Research; Humans; Medical Oncology; Netherlands; Organizational Objectives; Pharmacovigilance; Policy Making; Registries; Reproducibility of Results; Research Support as Topic
PubMed: 28408005
DOI: 10.1016/j.jval.2016.02.007 -
Advances in Nutrition (Bethesda, Md.) Nov 2017Dietary surveys in low-income countries (LICs) are hindered by low investment in the necessary research infrastructure, including a lack of basic technology for data... (Review)
Review
Dietary surveys in low-income countries (LICs) are hindered by low investment in the necessary research infrastructure, including a lack of basic technology for data collection, links to food composition information, and data processing. The result has been a dearth of dietary data in many LICs because of the high cost and time burden associated with dietary surveys, which are typically carried out by interviewers using pencil and paper. This study reviewed innovative dietary assessment technologies and gauged their suitability to improve the quality and time required to collect dietary data in LICs. Predefined search terms were used to identify technologies from peer-reviewed and gray literature. A total of 78 technologies were identified and grouped into 6 categories: ) computer- and tablet-based, ) mobile-based, ) camera-enabled, ) scale-based, ) wearable, and ) handheld spectrometers. For each technology, information was extracted on a number of overarching factors, including the primary purpose, mode of administration, and data processing capabilities. Each technology was then assessed against predetermined criteria, including requirements for respondent literacy, battery life, requirements for connectivity, ability to measure macro- and micronutrients, and overall appropriateness for use in LICs. Few technologies reviewed met all the criteria, exhibiting both practical constraints and a lack of demonstrated feasibility for use in LICs, particularly for large-scale, population-based surveys. To increase collection of dietary data in LICs, development of a contextually adaptable, interviewer-administered dietary assessment platform is recommended. Additional investments in the research infrastructure are equally important to ensure time and cost savings for the user.
Topics: Data Collection; Decision Making, Computer-Assisted; Developing Countries; Diet Surveys; Humans; Nutrition Assessment
PubMed: 29141974
DOI: 10.3945/an.116.014308 -
BMJ Global Health Jan 2021In-person interactions have traditionally been the gold standard for qualitative data collection. The COVID-19 pandemic required researchers to consider if remote data... (Review)
Review
In-person interactions have traditionally been the gold standard for qualitative data collection. The COVID-19 pandemic required researchers to consider if remote data collection can meet research objectives, while retaining the same level of data quality and participant protections. We use four case studies from the Philippines, Zambia, India and Uganda to assess the challenges and opportunities of remote data collection during COVID-19. We present lessons learned that may inform practice in similar settings, as well as reflections for the field of qualitative inquiry in the post-COVID-19 era. Key challenges and strategies to overcome them included the need for adapted researcher training in the use of technologies and consent procedures, preparation for abbreviated interviews due to connectivity concerns, and the adoption of regular researcher debriefings. Participant outreach to allay suspicions ranged from communicating study information through multiple channels to highlighting associations with local institutions to boost credibility. Interviews were largely successful, and contained a meaningful level of depth, nuance and conviction that allowed teams to meet study objectives. Rapport still benefitted from conventional interviewer skills, including attentiveness and fluency with interview guides. While differently abled populations may encounter different barriers, the included case studies, which varied in geography and aims, all experienced more rapid recruitment and robust enrollment. Reduced in-person travel lowered interview costs and increased participation among groups who may not have otherwise attended. In our view, remote data collection is not a replacement for in-person endeavours, but a highly beneficial complement. It may increase accessibility and equity in participant contributions and lower costs, while maintaining rich data collection in multiple study target populations and settings.
Topics: Africa South of the Sahara; COVID-19; Data Accuracy; Data Collection; Humans; India; Internet; Interpersonal Relations; Pandemics; Philippines; Physical Distancing; Qualitative Research; SARS-CoV-2
PubMed: 33419929
DOI: 10.1136/bmjgh-2020-004193