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Attitudes towards the collection and linkage of maltreatment data for research: A qualitative study.International Journal of Population... 2022Factors that affect public and professionals' attitudes towards the collection and linkage of health and other data have been explored in the literature. Thus far there...
INTRODUCTION
Factors that affect public and professionals' attitudes towards the collection and linkage of health and other data have been explored in the literature. Thus far there has been no study exploring attitudes towards the collection of child maltreatment data.
OBJECTIVES
Our aim is to explore attitudes regarding the collection and linkage of maltreatment data for research.
METHODS
Participants included younger mothers, older mothers, care-experienced young people, and professionals who were responsible for recording child maltreatment data. Four face-to-face focus groups were conducted, one with younger mothers (n = 6), one with older mothers (n = 10), and two with care-experienced young people (n = 6 and n = 5). An online focus group was conducted with professionals (n = 10), two of whom additionally participated in telephone interviews. Transcribed audio-recorded data were inductively coded, a portion were double-coded by a second researcher, and thematically analysed.
RESULTS
Three major themes were identified. The first concerned issues of consent, specifically the conditions for providing consent and factors influencing this. The second concerned trust in data security and validity, the organisations and individuals providing and using the data, and how the information provided shapes attitudes. The third theme explored the benefits of research and the researchers' role in child protection. Participants wanted the choice of providing consent for data collection, especially when consenting on behalf of another, but there were concerns that maltreated children were unidentifiable in anonymised datasets. Care-experienced young people were concerned about data collection from Social Services records due to their sensitivity. There was a general lack of understanding about how research data is viewed and the accuracy of records.
CONCLUSIONS
Novel findings in the study were strongly related to the sensitive nature of the topic. The findings may be particularly useful when designing research studies and participant materials and a co-productive approach to this should be taken.
Topics: Adolescent; Attitude; Child; Data Collection; Focus Groups; Humans; Qualitative Research; Trust
PubMed: 35146128
DOI: 10.23889/ijpds.v6i1.1693 -
Injury Prevention : Journal of the... Aug 2020More than a half-century of developments have expanded the demand for data for the prevention of injuries. This article follows the progress as data collection becomes...
More than a half-century of developments have expanded the demand for data for the prevention of injuries. This article follows the progress as data collection becomes more comprehensive, encompassing all types of injuries, in a wide range of economic and cultural environments. It describes the challenges of new developments and the responses to deal with them, challenges of poor coordination of data sources, sector ownership, non-uniformity and missing data elements that are critical for prevention. The tools and approaches that may be employed are outlined, from observatories to surveillance systems, from standardised injury coding systems such as the International Classification of External Cause of Injuries to manuals and guidelines for collecting injury data through surveillance and surveys. More and better data encourages greater utilisation which in turn identifies new issues to be addressed, a most exciting situation for any injury practitioner.
Topics: Data Collection; Humans; Information Storage and Retrieval; Population Surveillance; Wounds and Injuries
PubMed: 32694192
DOI: 10.1136/injuryprev-2020-043674 -
JCO Clinical Cancer Informatics Mar 2021For central cancer registries to become a more significant public health resource, they must evolve to capture more timely, accurate, and extensive data. Key...
For central cancer registries to become a more significant public health resource, they must evolve to capture more timely, accurate, and extensive data. Key stakeholders have called for a faster time to deliver work products, data extensions such as social determinants of health, and more relevant information for cancer control programs at the local level. The proposed model consists of near real-time reporting stages to replace the current time and labor-intensive efforts to populate a complete cancer case abstract on the basis of the 12- and 24-month data submission timelines. The first stage collects a cancer diagnosis minimum data set sufficient to describe population incidence and prevalence, which is then followed by a second stage capturing subsequent case updates and treatment data. A third stage procures targeted information in response to identified research projects' needs. The model also provides for further supplemental reports as may be defined to gather additional data. All stages leverage electronic health records' widespread development and the many emerging standards for data content, including national policies related to healthcare and technical standards for interoperability, such as the Fast Healthcare Interoperability Resources specifications to automate and accelerate reporting to central cancer registries. The emergence of application programming interfaces that allow for more interoperability among systems would be leveraged, leading to more efficient information sharing. Adopting this model will expedite cancer data availability to improve cancer control while supporting data integrity and flexibility in data items. It presents a long-term and feasible solution that addresses the extensive burden and unsustainable manual data collection requirements placed on Certified Tumor Registrars at disease reporting entities nationally.
Topics: Data Collection; Data Management; Electronic Health Records; Humans; Neoplasms; Registries
PubMed: 33760641
DOI: 10.1200/CCI.20.00177 -
Journal of Medical Internet Research Jan 2021The broad availability of smartphones and the number of health apps in app stores have risen in recent years. Health apps have benefits for individuals (eg, the ability... (Review)
Review
BACKGROUND
The broad availability of smartphones and the number of health apps in app stores have risen in recent years. Health apps have benefits for individuals (eg, the ability to monitor one's health) as well as for researchers (eg, the ability to collect data in population-based, clinical, and observational studies). Although the number of health apps on the global app market is huge and the associated potential seems to be great, app-based questionnaires for collecting patient-related data have not played an important role in epidemiological studies so far.
OBJECTIVE
This study aims to provide an overview of studies that have collected patient data using an app-based approach, with a particular focus on longitudinal studies. This literature review describes the current extent to which smartphones have been used for collecting (patient) data for research purposes, and the potential benefits and challenges associated with this approach.
METHODS
We conducted a scoping review of studies that used data collection via apps. PubMed was used to identify studies describing the use of smartphone app questionnaires for collecting data over time. Overall, 17 articles were included in the summary.
RESULTS
Based on the results of this scoping review, there are only a few studies that integrate smartphone apps into data-collection approaches. Studies dealing with the collection of health-related data via smartphone apps have mainly been developed with regard to psychosomatic, neurodegenerative, respiratory, and cardiovascular diseases, as well as malign neoplasm. Among the identified studies, the duration of data collection ranged from 4 weeks to 12 months, and the participants' mean ages ranged from 7 to 69 years. Potential can be seen for real-time information transfer, fast data synchronization (which saves time and increases effectivity), and the possibility of tracking responses longitudinally. Furthermore, smartphone-based data-collection techniques might prevent biases, such as reminder bias or mistakes occurring during manual data transfers. In chronic diseases, real-time communication with physicians and early detection of symptoms enables rapid modifications in disease management.
CONCLUSIONS
The results indicate that using mobile technologies can help to overcome challenges linked with data collection in epidemiological research. However, further feasibility studies need to be conducted in the near future to test the applicability and acceptance of these mobile apps for epidemiological research in various subpopulations.
Topics: Data Collection; Epidemiologic Studies; Humans; Longitudinal Studies; Mobile Applications
PubMed: 33480850
DOI: 10.2196/17691 -
BMC Medical Research Methodology Aug 2023Epidemiologic and medical studies often rely on evaluators to obtain measurements of exposures or outcomes for study participants, and valid estimates of associations...
BACKGROUND
Epidemiologic and medical studies often rely on evaluators to obtain measurements of exposures or outcomes for study participants, and valid estimates of associations depends on the quality of data. Even though statistical methods have been proposed to adjust for measurement errors, they often rely on unverifiable assumptions and could lead to biased estimates if those assumptions are violated. Therefore, methods for detecting potential 'outlier' evaluators are needed to improve data quality during data collection stage.
METHODS
In this paper, we propose a two-stage algorithm to detect 'outlier' evaluators whose evaluation results tend to be higher or lower than their counterparts. In the first stage, evaluators' effects are obtained by fitting a regression model. In the second stage, hypothesis tests are performed to detect 'outlier' evaluators, where we consider both the power of each hypothesis test and the false discovery rate (FDR) among all tests. We conduct an extensive simulation study to evaluate the proposed method, and illustrate the method by detecting potential 'outlier' audiologists in the data collection stage for the Audiology Assessment Arm of the Conservation of Hearing Study, an epidemiologic study for examining risk factors of hearing loss in the Nurses' Health Study II.
RESULTS
Our simulation study shows that our method not only can detect true 'outlier' evaluators, but also is less likely to falsely reject true 'normal' evaluators.
CONCLUSIONS
Our two-stage 'outlier' detection algorithm is a flexible approach that can effectively detect 'outlier' evaluators, and thus data quality can be improved during data collection stage.
Topics: Humans; Computer Simulation; Algorithms; Data Collection; Risk Factors; Data Accuracy
PubMed: 37528402
DOI: 10.1186/s12874-023-01988-4 -
BMJ Supportive & Palliative Care Jun 2021We wanted to create a medical/nursing led data collection tool to allow for an ongoing audit of the quality of deaths in a teaching hospital. We wanted to be able to...
OBJECTIVES
We wanted to create a medical/nursing led data collection tool to allow for an ongoing audit of the quality of deaths in a teaching hospital. We wanted to be able to produce a visual summary to monitor our involvement, use of PRN medication, recognition of death, treatment escalation plans and communication aspects. We feel these are good surrogate indicators for quality end-of-life care.
METHODS
We designed a purpose built spreadsheet which we have designed as an abbreviated version of the UK national audit tools. We involved a number of our core medical trainees to iterate the data collection so it could be done in a timely manner with a simple training guide. Our collective approach meant we have made this as straightforward as possible to roll out and maintain data collection.
RESULTS
We collected 100 cases over a period of 6 months (August 2019 to January 2020). We created a dashboard looking at the core elements of end-of-life care and found bar treatment escalation planning all aspects were completed the majority of the time with near 100% communication to relevant family and friends.
CONCLUSIONS
Our sample collection tool provides a useful ongoing indicator for the quality of end-of-life care in the trust and to provide a timely infographic quarterly to feedback to interested members of the trust. We hope to be able to continue over some years to collate themes and trends. We would encourage other hospital teams to adopt our approach.
Topics: Data Collection; Hospital Mortality; Hospitals, Teaching; Humans; Medical Audit; Quality Indicators, Health Care; Quality of Health Care; Terminal Care; United Kingdom
PubMed: 32366579
DOI: 10.1136/bmjspcare-2020-002223 -
Acta Psychologica Aug 2022There are numerous controversies in research exploring personality dynamics and intrapsychic processes, e.g. insufficient insight provided by available measures such as...
There are numerous controversies in research exploring personality dynamics and intrapsychic processes, e.g. insufficient insight provided by available measures such as self-report questionnaires. As a consequence, new methods are developed. Some of the recent theories indicate that self-esteem is not a stable personality trait, but a dynamic construct fluctuating as a result of (mostly) social interactions. I present a semi-structured interview protocol as a method of data collection which can provide rich verbal and non-verbal material referring to self-esteem regulation. Analysis system is not included as there can be many different approaches to use collected data, e.g. qualitative content analysis or narrative inquiry methods. In this paper, I present exemplary statements of participants corresponding to every part of the interview. The examples are explained considering theoretical background. Finally, the strengths and limitations of presented method are discussed, as well as possible research areas to explore with it.
Topics: Humans; Research Design; Self Concept; Self Report; Surveys and Questionnaires
PubMed: 35716626
DOI: 10.1016/j.actpsy.2022.103642 -
Ceska Gynekologie 2020To informed about international surveillance network severe maternal morbidity and mortality - INOSS. (Review)
Review
OBJECTIVE
To informed about international surveillance network severe maternal morbidity and mortality - INOSS.
DESIGN
Literature review.
SETTINGS
1st Department of Gynaecology and Obstetrics Faculty of Medicine, Comenius University and University Hospital, Bratislava, Slovak Republic.
METHODS
Literate review of articles published till august 2019.
RESULTS
The International Network of Obstetric Survey Systems (INOSS) is an international network that connects countries with the same or similar system of surveillance of acute severe maternal morbidity and mortality. The INOSS was established in year 2010 by twelve countries. Nowadays 19 countries are involved in the INOSS. The cooperation between member countries is focused on the acquisition of relevant data about rare severe acute maternal morbidities. INOSS in 2017 year unified definitions of 8 severe acute maternal morbidities according Delphi method: eclampsia, amniotic fluid embolism, peripartum hysterectomy, severe primary postpartum haemorrhage, uterine rupture, abnormally invasive placenta, spontaneous hemoperitoneum in pregnancy, and cardiac arrest in pregnancy.
CONCLUSION
The international cooperation allows the acquisition of relevant epidemiologic data and the optimalization of the treatment according the evidence-based medicine.
Topics: Data Collection; Evidence-Based Medicine; Female; Humans; International Cooperation; Maternal Mortality; Morbidity; Obstetric Labor Complications; Population Surveillance; Pregnancy; Pregnancy Complications; Registries; Slovakia; Surveys and Questionnaires
PubMed: 32527109
DOI: No ID Found -
JAMA Internal Medicine May 2021Clinical trials conducted at clinical sites are limited to enrolling people who live nearby and are able to attend visits at clinics. Some types of clinical trials can...
Clinical trials conducted at clinical sites are limited to enrolling people who live nearby and are able to attend visits at clinics. Some types of clinical trials can be performed without clinical sites, which enables people to participate regardless of proximity to a clinical site or limitations that make visits difficult. Trials at clinical sites involve face-to-face relationships with in-person collection of informed consent, examinations, data, and specimens. In contrast, without clinical sites, informed consent and data are obtained online, limited examinations can be performed by telemedicine or visiting research nurses, biospecimens can be collected by visiting nurses or local laboratories, and treatments can be sent to homes or administered by nurses in participants' homes. Trials without clinical sites require internet access and must adapt to the lack of face-to-face interactions with study staff, with communication conducted by email, telephone, or video. Many trials cannot be performed entirely without clinical sites because they require examinations, tests, or treatments that must be given at a clinical site. However, some of the methods required for trials without sites, such as online data collection, follow-up visits by telemedicine or research nurses, and delivery of treatments to home, could reduce the need for visits to clinical sites and reduce the burden of participating in a clinical trial. When feasible, conducting clinical trials without clinical sites has the potential to expand participation and the generalizability of their results.
Topics: Data Collection; Humans; Informed Consent; Remote Consultation; Research Design
PubMed: 33646281
DOI: 10.1001/jamainternmed.2020.9223 -
Child Abuse & Neglect Sep 2021In 1996, the ISPCAN Working Group on Child Maltreatment Data (ISPCAN-WGCMD) was established to provide an international forum in which individuals, who deal with child...
BACKGROUND
In 1996, the ISPCAN Working Group on Child Maltreatment Data (ISPCAN-WGCMD) was established to provide an international forum in which individuals, who deal with child maltreatment data in their respective professional roles, can share concerns and solutions.
OBJECTIVE
This commentary describes some of the key features and the status of child maltreatment related data collection addressed by the ISPCAN-WGCMD.
METHODS
Different types of data collection methods including self-report, sentinel, and administrative data designs are described as well as how they address different needs for information to help understand child maltreatment and systems of prevention and intervention.
RESULTS
While still lacking in many parts of the world, access to child maltreatment data has become much more widespread, and in many places a very sophisticated undertaking.
CONCLUSION
The ISPCAN-WGCMD has been an important forum for supporting the continued development and improvement in the global effort to understand and combat child maltreatment thus contributing to the long term goals of the UN Convention on the Rights of the Child. Nevertheless, based on what has been learned, even greater efforts are required to improve data in order to effectively combat child maltreatment.
Topics: Child; Child Abuse; Data Collection; Family; Humans; Self Report
PubMed: 32861435
DOI: 10.1016/j.chiabu.2020.104650