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The American Journal of Managed Care Aug 2022CMS' coverage with evidence development (CED) policy allows Medicare beneficiaries to access promising therapies and services while additional data are collected. CED...
OBJECTIVES
CMS' coverage with evidence development (CED) policy allows Medicare beneficiaries to access promising therapies and services while additional data are collected. CED program characteristics are mostly unreported, and qualities associated with retirement of CED data collection requirements are unknown. We aimed to review and systematically describe CED program history and components and report programmatic elements correlated with retirement of CED data collection requirements, while identifying areas for policy improvement.
STUDY DESIGN
Systematic review.
METHODS
We extracted CED information from the CMS website, ClinicalTrials.gov, PubMed, internet searches, and communication with CMS.
RESULTS
There were 27 CED determinations from 2005 to 2022 in 8 therapeutic areas, with the most for cardiovascular diseases (8/27; 30%). Duration of CED programs (range, 1-16 years) and the number of related registries and clinical trials (range, 0-34) were widely variable. Only 4 CEDs have had data collection requirements with continued National Coverage Determination (NCD); 3 relate to cardiovascular therapies, and all have some public availability of findings resulting from CED-related data collection mechanisms. There were 2 instances of NCD revocation and deferral to local coverage decisions.
CONCLUSIONS
Changes in the CED program through improving program predictability and transparency with regard to outstanding questions, roles of relevant stakeholders, and requirements for reporting and reevaluation would strengthen the program's effectiveness. Ultimately, these improvements would provide incentives for stakeholder participation in data collection to achieve the goal of increasing access to beneficial therapies and improving clinical outcomes.
Topics: Aged; Humans; Medicare; Noncommunicable Diseases; Program Development; Registries; United States
PubMed: 35981123
DOI: 10.37765/ajmc.2022.88870 -
BJOG : An International Journal of... Feb 2017Little is known about the gynaecological health of lesbian and bisexual (LB) women. (Meta-Analysis)
Meta-Analysis Review
BACKGROUND
Little is known about the gynaecological health of lesbian and bisexual (LB) women.
OBJECTIVES
To examine differences in incidence and/or prevalence of gynaecological conditions in LB compared with heterosexual women.
SEARCH STRATEGY
The systematic review protocol was prospectively registered (PROSPERO-CRD42015027091) and searches conducted in seven databases.
SELECTION CRITERIA
Comparative studies published 2000-2015, reporting any benign (non-infectious) and/or malignant gynaecological conditions with no language or setting restrictions.
DATA COLLECTION AND ANALYSIS
Inclusions, data extraction and quality assessment were conducted in duplicate. Meta-analyses of condition prevalence rates were conducted where ≥3 studies reported results.
MAIN RESULTS
From 567 records, 47 full papers were examined and 11 studies of mixed designs included. No studies directly addressing the question were found. Two chronic pelvic pain studies reported higher rates in bisexual compared with heterosexual women (38.5 versus 28.2% and 18.6 versus 6.4%). Meta-analyses showed no statistically significant differences in polycystic ovarian syndrome, endometriosis and fibroids. There was a higher rate of cervical cancer in bisexual than heterosexual women [odds ratio (OR) = 1.94; 95% CI 1.46-2.59] but no difference overall (OR = 0.76; 95% CI 0.15-3.92). There was a lower rate of uterine cancer in lesbian than heterosexual women (OR = 0.28; 95% CI 0.11-0.73) and overall (OR = 0.36; 95% CI 0.13-0.97), but no difference in bisexual women (OR = 0.43; 95% CI 0.06-3.07).
CONCLUSIONS
More bisexual women may experience chronic pelvic pain and cervical cancer than heterosexual women. There is no information on potential confounders. Better evidence is required, preferably monitoring sexual orientation in research using the existing validated measure and fully reporting results.
TWEETABLE ABSTRACT
Lesbians have less uterine cancer than heterosexual women; bisexuals have more pelvic pain and cervical cancer.
Topics: Bisexuality; Female; Genital Diseases, Female; Gynecology; Homosexuality, Female; Humans; Incidence; Prevalence; Sexual and Gender Minorities
PubMed: 27862853
DOI: 10.1111/1471-0528.14414 -
Systematic Reviews Apr 2015Key performance indicators (KPIs) are used to identify where organisational performance is meeting desired standards and where performance requires improvement. Valid... (Review)
Review
BACKGROUND
Key performance indicators (KPIs) are used to identify where organisational performance is meeting desired standards and where performance requires improvement. Valid and reliable KPIs depend on the availability of high-quality data, specifically the relevant minimum data set ((MDS) the core data identified as the minimum required to measure performance for a KPI) elements. However, the feasibility of collecting the relevant MDS elements is always a limitation of performance monitoring using KPIs. Preferably, data should be integrated into service delivery, and, where additional data are required that are not currently collected as part of routine service delivery, there should be an economic evaluation to determine the cost of data collection. The aim of this systematic review was to synthesise the evidence base concerning the costs of data collection in hospitals for performance monitoring using KPI, and to identify hospital data collection systems that have proven to be cost minimising.
METHODS
We searched MEDLINE (1946 to May week 4 2014), Embase (1974 to May week 2 2014), and CINAHL (1937 to date). The database searches were supplemented by searching for grey literature through the OpenGrey database. Data was extracted, tabulated, and summarised as part of a narrative synthesis.
RESULTS
The searches yielded a total of 1,135 publications. After assessing each identified study against specific inclusion exclusion criteria only eight studies were deemed as relevant for this review. The studies attempt to evaluate different types of data collection interventions including the installation of information communication technology (ICT), improvements to current ICT systems, and how different analysis techniques may be used to monitor performance. The evaluation methods used to measure the costs and benefits of data collection interventions are inconsistent across the identified literature. Overall, the results weakly indicate that collection of hospital data and improvements in data recording can be cost-saving.
CONCLUSIONS
Given the limitations of this systematic review, it is difficult to conclude whether improvements in data collection systems can save money, increase quality of care, and assist performance monitoring of hospitals. With that said, the results are positive and suggest that data collection improvements may lead to cost savings and aid quality of care.
SYSTEMATIC REVIEW REGISTRATION
PROSPERO CRD42014007450 .
Topics: Cost-Benefit Analysis; Data Collection; Databases, Factual; Hospitals; Humans; Quality Indicators, Health Care
PubMed: 25875828
DOI: 10.1186/s13643-015-0013-7 -
BMC Oral Health Oct 2022This scoping review reports on studies that collect survey data using quantitative research to measure self-reported oral health status outcome measures. The objective... (Review)
Review
BACKGROUND
This scoping review reports on studies that collect survey data using quantitative research to measure self-reported oral health status outcome measures. The objective of this review is to categorize measures used to evaluate self-reported oral health status and oral health quality of life used in surveys of general populations.
METHODS
The review is guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) with the search on four online bibliographic databases. The criteria include (1) peer-reviewed articles, (2) papers published between 2011 and 2021, (3) only studies using quantitative methods, and (4) containing outcome measures of self-assessed oral health status, and/or oral health-related quality of life. All survey data collection methods are assessed and papers whose methods employ newer technological approaches are also identified.
RESULTS
Of the 2981 unduplicated papers, 239 meet the eligibility criteria. Half of the papers use impact scores such as the OHIP-14; 10% use functional measures, such as the GOHAI, and 26% use two or more measures while 8% use rating scales of oral health status. The review identifies four data collection methods: in-person, mail-in, Internet-based, and telephone surveys. Most (86%) employ in-person surveys, and 39% are conducted in Asia-Pacific and Middle East countries with 8% in North America. Sixty-six percent of the studies recruit participants directly from clinics and schools, where the surveys were carried out. The top three sampling methods are convenience sampling (52%), simple random sampling (12%), and stratified sampling (12%). Among the four data collection methods, in-person surveys have the highest response rate (91%), while the lowest response rate occurs in Internet-based surveys (37%). Telephone surveys are used to cover a wider population compared to other data collection methods. There are two noteworthy approaches: 1) sample selection where researchers employ different platforms to access subjects, and 2) mode of interaction with subjects, with the use of computers to collect self-reported data.
CONCLUSION
The study provides an assessment of oral health outcome measures, including subject-reported oral health status and notes newly emerging computer technological approaches recently used in surveys conducted on general populations. These newer applications, though rarely used, hold promise for both researchers and the various populations that use or need oral health care.
Topics: Humans; Oral Health; Quality of Life; Schools; Self Report; Surveys and Questionnaires
PubMed: 36192721
DOI: 10.1186/s12903-022-02399-5 -
Current Opinion in Critical Care Jun 2015This review outlines knowledge on the epidemiology of out-of-hospital cardiac arrest (OHCA) internationally and the contribution that resuscitation registries make to... (Review)
Review
PURPOSE OF REVIEW
This review outlines knowledge on the epidemiology of out-of-hospital cardiac arrest (OHCA) internationally and the contribution that resuscitation registries make to OHCA research. The review focuses on recent advances in the European Cardiac Arrest Registry project, EuReCa.
RECENT FINDINGS
Although literature describing the epidemiology of OHCA has proliferated in recent years, a 2010 systematic review by Berdowski et al. remains a most important publication, allowing international comparison of OHCA incidence and outcome. Recent literature supports the view that resuscitation registers are excellent sources of data on OHCA. Notable publications describe geographic variation in incidence, improvements in survival and the utility of registers in the development of survival prediction models.
SUMMARY
Data from resuscitation registries are an invaluable source of information on the incidence, management and outcome of OHCA. Registries can be used to generate hypotheses for clinical research and registry data may even be used to facilitate clinical trials. To develop international research collaboration, registries must be based on the same dataset and definitions, and include descriptions of data collection methodologies and emergency medical service (EMS) configurations. If such standardization can be achieved, the possibility of an international resuscitation registry might be realized, leading to important OHCA research opportunities worldwide.
Topics: Cardiopulmonary Resuscitation; Europe; Global Health; Humans; Incidence; Out-of-Hospital Cardiac Arrest; Outcome and Process Assessment, Health Care; Registries; Survival Rate
PubMed: 25887301
DOI: 10.1097/MCC.0000000000000206 -
Zeitschrift Fur Rheumatologie Jun 2023Recently, many sectors have seen disruptive changes due to the rapid progress in information and communication technology (ICT). The aim of this systematic literature...
INTRODUCTION
Recently, many sectors have seen disruptive changes due to the rapid progress in information and communication technology (ICT). The aim of this systematic literature review was to develop a first understanding of what is known about new ICTs in rheumatology and their disruptive potential.
METHODS
PubMed, LIVIVO, and EBSCO Discovery Service (EDS) databases were searched for relevant literature. Use of new ICTs was identified, categorized, and disruptive potential was discussed. Articles from 2008 to 2021 in German and English were considered.
RESULTS
A total of 3539 articles were identified. After application of inclusion/exclusion criteria, 55 articles were included in the analyses. The majority of articles (48) used a non-experimental design or detailed expert opinion. The new ICTs mentioned in these articles could be allocated to four main categories: technologies that prepare for the development of new knowledge by data collection (n = 32); technologies that develop new knowledge by evaluation of data (e.g., by inventing better treatment; n = 11); technologies that improve communication of existing knowledge (n = 32); and technologies that improve the care process (n = 29). Further assessment classified the ICTs into different functional subcategories. Based on these categories it is possible to estimate the disruptive potential of new ICTs.
CONCLUSION
ICTs are becoming increasingly important in rheumatology and may impact patients' lives and professional conduct. The properties and disruptive potential of technologies identified in the articles differ widely. When looking into ICTs, doctors have focused on new diagnostic and therapeutic procedures but rarely on their disruptive potential. We recommend putting more effort into investigation of whether ICTs change the way rheumatology is performed and who is in control of it. Especially technologies that potentially replace physicians with machines, take control over the definition of quality in medicine, and/or create proprietary knowledge that is not accessible for doctors need more research.
Topics: Humans; Rheumatology; Communication; Surveys and Questionnaires
PubMed: 35639150
DOI: 10.1007/s00393-022-01222-4 -
Journal of Nutrition Education and... 2015To identify and review data collection techniques used to measure preschool children's knowledge of food and nutrition. (Review)
Review
OBJECTIVE
To identify and review data collection techniques used to measure preschool children's knowledge of food and nutrition.
DESIGN
A systematic review of published research guided by the Preferred Reported Items for Systematic Reviews and Meta-analyses statement.
PARTICIPANTS
Published journal articles between 1980 and 2013 reporting research involving the measurement of preschool children's (aged 3-5 years) knowledge of food and nutrition.
RESULTS
Twenty studies were eligible for inclusion. The studies reported the use of a range of innovative age-appropriate techniques to assess children's knowledge of food and nutrition. Data collection techniques were grouped under 3 broad approaches: (1) interviews, (2) use of stimulus material and prompts, and (3) structured play-based activities. Only 3 of the reviewed studies tested for both reliability (test-retest and internal consistency) and face and content validity. Only 9 of the reviewed studies reported pilot-testing their instruments before use.
CONCLUSIONS AND IMPLICATIONS
Results from this review suggest that additional research is needed to develop more valid and reliable measures to assess preschool children's knowledge of food and nutrition. Assessment tools need to be pilot-tested, refined, and adapted to suit both the specific audience and the components of the nutrition knowledge being targeted by an intervention before implementing a nutrition education program.
Topics: Child, Preschool; Health Knowledge, Attitudes, Practice; Humans; Nutrition Surveys; Students
PubMed: 25975958
DOI: 10.1016/j.jneb.2015.03.013 -
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