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International Journal of Medical... Sep 2019Passive data refers to data generated without the active participation of the subject. This includes data from global positioning systems and accelerometers or metadata...
INTRODUCTION
Passive data refers to data generated without the active participation of the subject. This includes data from global positioning systems and accelerometers or metadata on phone call and text activity. Although the potential healthcare applications are far-reaching, passive data raises numerous ethical challenges.
MATERIALS AND METHODS
We performed a systematic review to identify all ethical concerns, normative standpoints, and underlying arguments related to the use of passive data in healthcare.
RESULTS
Among the various challenges discussed in the ethical literature, informational privacy, informed consent, and data security were the primary focus of the current debate. Other topics of discussion were the evaluation and regulation of products, equity in access, vulnerable patient groups, ownership, and secondary use.
CONCLUSION
No clear ethical framework has been established that stimulates passive data-driven innovation while protecting patient integrity. The consensus in the ethical literature, as well as the parallels with similar concerns and solutions in other fields, can lay a foundation for the construction of an ethical framework. The future debate should focus on conflicts between two or more ethical, technical, or clinical values to ensure a safe and effective implementation of passive data in healthcare.
Topics: Consensus; Data Collection; Delivery of Health Care; Informed Consent; Ownership; Privacy
PubMed: 31445262
DOI: 10.1016/j.ijmedinf.2019.06.015 -
Journal of Medical Internet Research Jul 2023The minimum data set (MDS) is a collection of data elements to be grouped using a standard approach to allow the use of data for clinical and research purposes. Health... (Review)
Review
BACKGROUND
The minimum data set (MDS) is a collection of data elements to be grouped using a standard approach to allow the use of data for clinical and research purposes. Health data are typically voluminous, complex, and sometimes too ambiguous to generate indicators that can provide knowledge and information on health. This complexity extends further to the rare disease (RD) domain. MDSs are essential for health surveillance as they help provide services and generate recommended population indicators. There is a bottleneck in international literature that reveals a global problem with data collection, recording, and structuring in RD.
OBJECTIVE
This study aimed to identify and analyze the MDSs used for RD in health care networks worldwide and compare them with World Health Organization (WHO) guidelines.
METHODS
The population, concept, and context methodology proposed by the Joanna Briggs Institute was used to define the research question of this systematic review. A total of 4 databases were reviewed, and all the processes were reported using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) methodology. The data elements were analyzed, extracted, and organized into 10 categories according to WHO digital health guidelines. The quality assessment used the STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) checklist.
RESULTS
We included 20 studies in our review, 70% (n=14) of which focused on a specific health domain and 30% (n=6) of which referred to RD in general. WHO recommends that health systems and networks use standard terminology to exchange data, information, knowledge, and intelligence in health. However, there was a lack of terminological standardization of the concepts in MDSs. Moreover, the selected studies did not follow the same standard structure for classifying the data from their MDSs. All studies presented MDSs with limitations or restrictions because they covered only a specific RD, or their scope of application was restricted to a specific context or geographic region. Data science methods and clinical experience were used to design, structure, and recommend a fundamental global MDS for RD patient records in health care networks.
CONCLUSIONS
Our study highlights the difficulties in standardizing and categorizing findings from MDSs for RD because of the varying structures used in different studies. The fundamental RD MDS designed in this study comprehensively covers the data needs in the clinical and management sectors. These results can help public policy makers support other aspects of their policies. We highlight the potential of our results to help strategic decisions related to RD.
TRIAL REGISTRATION
PROSPERO CRD42021221593; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=221593.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID)
RR2-10.1016/j.procs.2021.12.034.
Topics: Humans; Rare Diseases; Administrative Personnel; Checklist; Data Science; Public Policy
PubMed: 37498666
DOI: 10.2196/44641 -
International Journal of Environmental... May 2022Public schools in the U.S. generate about 14,500 tons of municipal solid waste daily, and approximately 42% of that is food packaging generated by school foodservice,... (Review)
Review
Public schools in the U.S. generate about 14,500 tons of municipal solid waste daily, and approximately 42% of that is food packaging generated by school foodservice, contributing significantly to the global packaging waste crisis. This literature review summarizes methods used to evaluate food packaging waste in school foodservice. This review has two objectives: first, to understand which methodologies currently exist to evaluate food packaging waste generation and disposal in school foodservice; and second, to describe the creation of and share a practical standardized instrument to evaluate food packaging waste generation and disposal in school foodservice. A systematic review was conducted using the following search terms: solid waste, school, cafeteria and food packaging, waste, and school. The final review included 24 studies conducted in school environments (kindergarten through twelfth grade or college/university), 16 of which took place in the U.S. Food packaging waste evaluations included objective methods of waste audits, models, and secondary data as well as subjective methods of qualitative observations, questionnaires, interviews, and focus groups. Large variation exists in the settings, participants, designs, and methodologies for evaluating school foodservice packaging waste. Lack of standardization was observed even within each methodology (e.g., waste audit). A new instrument is proposed to support comprehensive and replicable data collection, to further the understanding of school foodservice food packaging waste in the U.S., and to reduce environmental harms.
Topics: Food Packaging; Food Services; Humans; Refuse Disposal; Schools; Solid Waste; Surveys and Questionnaires
PubMed: 35565014
DOI: 10.3390/ijerph19095607 -
International Journal of Environmental... Dec 2022Historically, quality measurement analyses utilize manual chart abstraction from data collected primarily for administrative purposes. These methods are... (Review)
Review
Historically, quality measurement analyses utilize manual chart abstraction from data collected primarily for administrative purposes. These methods are resource-intensive, time-delayed, and often lack clinical relevance. Electronic Medical Records (EMRs) have increased data availability and opportunities for quality measurement. However, little is known about the effectiveness of Measurement Feedback Systems (MFSs) in utilizing EMR data. This study explores the effectiveness and characteristics of EMR-enabled MFSs in tertiary care. The search strategy guided by the PICO Framework was executed in four databases. Two reviewers screened abstracts and manuscripts. Data on effect and intervention characteristics were extracted using a tailored version of the Cochrane EPOC abstraction tool. Due to study heterogeneity, a narrative synthesis was conducted and reported according to PRISMA guidelines. A total of 14 unique MFS studies were extracted and synthesized, of which 12 had positive effects on outcomes. Findings indicate that quality measurement using EMR data is feasible in certain contexts and successful MFSs often incorporated electronic feedback methods, supported by clinical leadership and action planning. EMR-enabled MFSs have the potential to reduce the burden of data collection for quality measurement but further research is needed to evaluate EMR-enabled MFSs to translate and scale findings to broader implementation contexts.
Topics: Electronic Health Records; Feedback; Delivery of Health Care; Databases, Factual
PubMed: 36612522
DOI: 10.3390/ijerph20010200 -
Birth (Berkeley, Calif.) Jun 2021To estimate the prevalence and associated risk factors of perinatal depression in Pakistan. (Meta-Analysis)
Meta-Analysis Review
OBJECTIVE
To estimate the prevalence and associated risk factors of perinatal depression in Pakistan.
METHODS
We conducted a systematic search of Medline, PsycINFO, CINAHL, EMBASE, and Global health, up through May 31, 2019. Studies reporting on the prevalence of perinatal depression in Pakistan with or without associated risks factors were included.
RESULTS
Forty-three studies reporting data from 17 544 women met the eligibility criteria and were included. Overall, the pooled prevalence of antenatal depression was 37% (95% CI: 30-44), while that of postnatal depression was 30% (95% CI: 25-36). The prevalence of perinatal depression in women residing in urban areas and those living in rural settings was not significantly different. The most frequently reported risk factors for antenatal depression were intimate partner violence and poor relationship with spouse, and that reported for postnatal depression was low-income level. An unintended pregnancy was significantly associated with perinatal depression in Pakistan.
CONCLUSIONS
We identified variability in prevalence rate of perinatal depression in Pakistan. It is difficult to gauge the true magnitude of this problem potentially due to differing risk factors between the antenatal and postnatal periods and the lack of uniformity of data collection protocols and procedures. The high prevalence rates of 30%-37% compared to global estimates suggest policy makers and stakeholders should direct additional resources toward improving perinatal mental health in Pakistan.
Topics: Depression; Depression, Postpartum; Female; Humans; Mental Health; Pakistan; Pregnancy; Prevalence
PubMed: 33580505
DOI: 10.1111/birt.12535 -
Aging Clinical and Experimental Research Dec 2023With the increase in the aging population, informal caregivers have become an essential pillar for the long-term care of older individuals. However, providing care can... (Review)
Review
BACKGROUND
With the increase in the aging population, informal caregivers have become an essential pillar for the long-term care of older individuals. However, providing care can have a negative impact and increase the burden on caregivers, which is a cause for concern.
OBJECTIVE
This study aimed to comprehensively depict the concept of "informal caregiver burden" through bibliometric and content analyses.
METHODS
We searched the Web of Science (WoS) database to obtain bibliometric data and included only papers published between 2013 and 2022. We used content analysis to extract and identify the core concepts within the text systematically.
RESULTS
Altogether, 934 papers were included in the bibliometric analysis, from which we selected 19 highly impactful papers for content analysis. The results indicate that researchers have focused on exploring the factors that impact informal caregiver burden. Meanwhile, there has been a widespread discussion regarding the caregiver burden among those caring for recipients with specific illnesses, such as dementia, Alzheimer's disease, and cancer, as these illnesses can contribute to varying levels of burden on informal caregivers. In addition, questionnaires and interviews emerged as the predominant methods for data collection in the realm of informal caregiver research. Furthermore, we identified 26 distinct assessment tools specifically tailored for evaluating burden, such as caregiver strain index (CSI).
CONCLUSION
For future studies, we suggest considering the intersectionality of factors contributing to the burden on informal caregivers. This approach could enhance the well-being of both caregivers and older care recipients.
Topics: Humans; Aged; Caregivers; Caregiver Burden; Alzheimer Disease; Aging; Surveys and Questionnaires; Quality of Life
PubMed: 37907665
DOI: 10.1007/s40520-023-02582-w -
International Journal of Environmental... Feb 2021Gestational diabetes mellitus (GDM) is a major public health problem and a threat to maternal and child health. There is a lack of integrated and systematically... (Review)
Review
Gestational diabetes mellitus (GDM) is a major public health problem and a threat to maternal and child health. There is a lack of integrated and systematically synthesized knowledge about the prevalence GDM in Norway. Therefore, this systemic review aimed to present the best available peer-reviewed published evidence from the past 20 years about the prevalence of GDM in Norway. A comprehensive literature search was performed on online databases consisting of PubMed (including Medline), Web of Science, and Scopus to retrieve original research articles published on the prevalence of GDM up to August 2020. Also, databases of Norart and SveMed in the Norwegian language were searched to enhance the search coverage. Data were extracted using a standardized protocol and data collection form and were presented narratively. A total of 11 studies were selected to include for data analysis and synthesis with the total sample size of 2,314,191 pregnant women. The studies included heterogenous populations and mostly reported the prevalence of GDM in healthy mothers with singleton pregnancies. The prevalence of GDM in population registered-based studies in Norway was reported to be lower than 2%, using the World Health Organization (WHO) 1999 criteria. However, studies on high-risk populations such as the non-European ethnicity reported prevalence rates ranging from 8% to 15%. Given the evidence from available literature that reported trends in the prevalence of GDM, an increase in the prevalence of GDM across most racial/ethnic groups studied in Norway was observed. Overall, the prevalence of GDM in the low risk population of Norway is fairly low, but the available literature supports the perspective that the prevalence of GDM has shown an increasing trend in recent decades. This finding is very important for health service planning and evaluation, policy development, and research in Norway. Large-scale prospective studies, using the national data, are warranted to provide firm evidence over coming years. Our review findings can help policy makers devise appropriate strategies for improving women's reproductive health.
Topics: Child; Diabetes, Gestational; Female; Humans; Norway; Pregnancy; Prevalence; Prospective Studies; Risk Factors
PubMed: 33546492
DOI: 10.3390/ijerph18041423 -
Medical Care Research and Review : MCRR Jun 2023Health centers (HCs) play a crucial and integral role in addressing social determinants of health (SDOH) among vulnerable and underserved populations, yet data on SDOH... (Review)
Review
Health centers (HCs) play a crucial and integral role in addressing social determinants of health (SDOH) among vulnerable and underserved populations, yet data on SDOH assessment and subsequent actions is limited. We conducted a systematic review to understand the existing evidence of integration of SDOH into HC primary-care practices. Database searches yielded 3,516 studies, of which 41 articles met the inclusion criteria. A majority of studies showed that HCs primarily captured patient-level rather than community-level SDOH data. Studies also showed that HCs utilized SDOH in electronic health records but capabilities varied widely. A few studies indicated that HCs measured health-related outcomes of integrating SDOH data. The review highlighted that many knowledge gaps exist in the collection, use, and assessment of impact of these data on outcomes, and future research is needed to address this knowledge gap.
Topics: Humans; Social Determinants of Health; Primary Health Care; Surveys and Questionnaires
PubMed: 35465766
DOI: 10.1177/10775587221088273 -
BioMed Research International 2023In recent years, the use of dashboards in healthcare has been considered an effective approach for the visual presentation of information to support clinical and... (Review)
Review
INTRODUCTION
In recent years, the use of dashboards in healthcare has been considered an effective approach for the visual presentation of information to support clinical and administrative decisions. Effective and efficient use of dashboards in clinical and managerial processes requires a framework for the design and development of tools based on usability principles.
OBJECTIVES
The present study is aimed at investigating the existing questionnaires used for the usability evaluation framework of dashboards and at presenting more specific usability criteria for evaluating dashboards.
METHODS
This systematic review was conducted using PubMed, Web of Science, and Scopus, without any time restrictions. The final search of articles was performed on September 2, 2022. Data collection was performed using a data extraction form, and the content of selected studies was analyzed based on the dashboard usability criteria.
RESULTS
After reviewing the full text of relevant articles, a total of 29 studies were selected according to the inclusion criteria. Regarding the questionnaires used in the selected studies, researcher-made questionnaires were used in five studies, while 25 studies applied previously used questionnaires. The most widely used questionnaires were the System Usability Scale (SUS), Technology Acceptance Model (TAM), Situation Awareness Rating Technique (SART), Questionnaire for User Interaction Satisfaction (QUIS), Unified Theory of Acceptance and Use of Technology (UTAUT), and Health Information Technology Usability Evaluation Scale (Health-ITUES), respectively. Finally, dashboard evaluation criteria, including usefulness, operability, learnability, ease of use, suitability for tasks, improvement of situational awareness, satisfaction, user interface, content, and system capabilities, were suggested.
CONCLUSION
General questionnaires that were not specifically designed for dashboard evaluation were mainly used in reviewed studies. The current study suggested specific criteria for measuring the usability of dashboards. When selecting the usability evaluation criteria for dashboards, it is important to pay attention to the evaluation objectives, dashboard features and capabilities, and context of use.
Topics: Awareness; Data Collection; Health Facilities; PubMed; Technology
PubMed: 36874923
DOI: 10.1155/2023/9990933 -
BMC Psychiatry Oct 2022The experience sampling method (ESM) is an intensive longitudinal research method. Participants complete questionnaires at multiple times about their current or very...
BACKGROUND
The experience sampling method (ESM) is an intensive longitudinal research method. Participants complete questionnaires at multiple times about their current or very recent state. The design of ESM studies is complex. People with psychosis have been shown to be less adherent to ESM study protocols than the general population. It is not known how to design studies that increase adherence to study protocols. A lack of typology makes it is hard for researchers to decide how to collect data in a way that allows for methodological rigour, quality of reporting, and the ability to synthesise findings. The aims of this systematic review were to characterise the design choices made in ESM studies monitoring the daily lives of people with psychosis, and to synthesise evidence relating the data completeness to different design choices.
METHODS
A systematic review was conducted of published literature on studies using ESM with people with psychosis. Studies were included if they used digital technology for data collection and reported the completeness of the data set. The constant comparative method was used to identify design decisions, using inductive identification of design decisions with simultaneous comparison of design decisions observed. Weighted regression was used to identify design decisions that predicted data completeness. The review was pre-registered (PROSPERO CRD42019125545).
RESULTS
Thirty-eight studies were included. A typology of design choices used in ESM studies was developed, which comprised three superordinate categories of design choice: Study context, ESM approach and ESM implementation. Design decisions that predict data completeness include type of ESM protocol used, length of time participants are enrolled in the study, and if there is contact with the research team during data collection.
CONCLUSIONS
This review identified a range of design decisions used in studies using ESM in the context of psychosis. Design decisions that influence data completeness were identified. Findings will help the design and reporting of future ESM studies. Results are presented with the focus on psychosis, but the findings can be applied across different mental health populations.
Topics: Humans; Ecological Momentary Assessment; Psychotic Disorders; Research Design; Surveys and Questionnaires
PubMed: 36307752
DOI: 10.1186/s12888-022-04319-x