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Journal of Medical Internet Research Apr 2021Blockchain technology has the potential to enable more secure, transparent, and equitable data management. In the health care domain, it has been applied most frequently... (Review)
Review
BACKGROUND
Blockchain technology has the potential to enable more secure, transparent, and equitable data management. In the health care domain, it has been applied most frequently to electronic health records. In addition to securely managing data, blockchain has significant advantages in distributing data access, control, and ownership to end users. Due to this attribute, among others, the use of blockchain to power personal health records (PHRs) is especially appealing.
OBJECTIVE
This review aims to examine the current landscape, design choices, limitations, and future directions of blockchain-based PHRs.
METHODS
Adopting the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) guidelines, a cross-disciplinary systematic review was performed in July 2020 on all eligible articles, including gray literature, from the following 8 databases: ACM, IEEE Xplore, MEDLINE, ScienceDirect, Scopus, SpringerLink, Web of Science, and Google Scholar. Three reviewers independently performed a full-text review and data abstraction using a standardized data collection form.
RESULTS
A total of 58 articles met the inclusion criteria. In the review, we found that the blockchain PHR space has matured over the past 5 years, from purely conceptual ideas initially to an increasing trend of publications describing prototypes and even implementations. Although the eventual application of blockchain in PHRs is intended for the health care industry, the majority of the articles were found in engineering or computer science publications. Among the blockchain PHRs described, permissioned blockchains and off-chain storage were the most common design choices. Although 18 articles described a tethered blockchain PHR, all of them were at the conceptual stage.
CONCLUSIONS
This review revealed that although research interest in blockchain PHRs is increasing and that the space is maturing, this technology is still largely in the conceptual stage. Being the first systematic review on blockchain PHRs, this review should serve as a basis for future reviews to track the development of the space.
Topics: Blockchain; Delivery of Health Care; Electronic Health Records; Health Records, Personal; Humans; Technology
PubMed: 33847591
DOI: 10.2196/25094 -
The Canadian Journal of Neurological... Apr 2016Introduction Dementia is a common neurological condition affecting many older individuals that leads to a loss of independence, diminished quality of life, premature... (Meta-Analysis)
Meta-Analysis Review
UNLABELLED
Introduction Dementia is a common neurological condition affecting many older individuals that leads to a loss of independence, diminished quality of life, premature mortality, caregiver burden and high levels of healthcare utilization and cost. This is an updated systematic review and meta-analysis of the worldwide prevalence and incidence of dementia.
METHODS
The MEDLINE and EMBASE databases were searched for relevant studies published between 2000 (1985 for Canadian papers) and July of 2012. Papers selected for full-text review were included in the systematic review if they provided an original population-based estimate for the incidence and/or prevalence of dementia. The reference lists of included articles were also searched for additional studies. Two individuals independently performed abstract and full-text review, data extraction, and quality assessment of the papers. Random-effects models and/or meta-regression were used to generate pooled estimates by age, sex, setting (i.e., community, institution, both), diagnostic criteria utilized, location (i.e., continent) and year of data collection.
RESULTS
Of 16,066 abstracts screened, 707 articles were selected for full-text review. A total of 160 studies met the inclusion criteria. Among individuals 60 and over residing in the community, the pooled point and annual period prevalence estimates of dementia were 48.62 (CI95%: 41.98-56.32) and 69.07 (CI95%: 52.36-91.11) per 1000 persons, respectively. The respective pooled incidence rate (same age and setting) was 17.18 (CI95%: 13.90-21.23) per 1000 person-years, while the annual incidence proportion was 52.85 (CI95%: 33.08-84.42) per 1,000 persons. Increasing participant age was associated with a higher dementia prevalence and incidence. Annual period prevalence was higher in North America than in South America, Europe and Asia (in order of decreasing period prevalence) and higher in institutional compared to community and combined settings. Sex, diagnostic criteria (except for incidence proportion) and year of data collection were not associated with statistically significant different estimates of prevalence or incidence, though estimates were consistently higher for females than males.
CONCLUSIONS
Dementia is a common neurological condition in older individuals. Significant gaps in knowledge about its epidemiology were identified, particularly with regard to the incidence of dementia in low- and middle-income countries. Accurate estimates of prevalence and incidence of dementia are needed to plan for the health and social services that will be required to deal with an aging population.
Topics: Age Factors; Databases, Bibliographic; Dementia; Female; Humans; Incidence; Male; Prevalence
PubMed: 27307127
DOI: 10.1017/cjn.2016.18 -
BMJ (Clinical Research Ed.) May 2003To systematically review measures of data quality in electronic patient records (EPRs) in primary care. (Review)
Review
OBJECTIVE
To systematically review measures of data quality in electronic patient records (EPRs) in primary care.
DESIGN
Systematic review of English language publications, 1980-2001.
DATA SOURCES
Bibliographic searches of medical databases, specialist medical informatics databases, conference proceedings, and institutional contacts.
STUDY SELECTION
Studies selected according to a predefined framework for categorising review papers.
DATA EXTRACTION
Reference standards and measurements used to judge quality.
RESULTS
Bibliographic searches identified 4589 publications. After primary exclusions 174 articles were classified, 52 of which met the inclusion criteria for review. Selected studies were primarily descriptive surveys. Variability in methods prevented meta-analysis of results. Forty eight publications were concerned with diagnostic data, 37 studies measured data quality, and 15 scoped EPR quality. Reliability of data was assessed with rate comparison. Measures of sensitivity were highly dependent on the element of EPR data being investigated, while the positive predictive value was consistently high, indicating good validity. Prescribing data were generally of better quality than diagnostic or lifestyle data.
CONCLUSION
The lack of standardised methods for assessment of quality of data in electronic patient records makes it difficult to compare results between studies. Studies should present data quality measures with clear numerators, denominators, and confidence intervals. Ambiguous terms such as "accuracy" should be avoided unless precisely defined.
Topics: Ambulatory Care Information Systems; Data Collection; Humans; Medical Records Systems, Computerized; Primary Health Care; Quality of Health Care; Reproducibility of Results; State Medicine; United Kingdom
PubMed: 12750210
DOI: 10.1136/bmj.326.7398.1070 -
PloS One May 2009The frequency with which scientists fabricate and falsify data, or commit other forms of scientific misconduct is a matter of controversy. Many surveys have asked... (Meta-Analysis)
Meta-Analysis Review
The frequency with which scientists fabricate and falsify data, or commit other forms of scientific misconduct is a matter of controversy. Many surveys have asked scientists directly whether they have committed or know of a colleague who committed research misconduct, but their results appeared difficult to compare and synthesize. This is the first meta-analysis of these surveys. To standardize outcomes, the number of respondents who recalled at least one incident of misconduct was calculated for each question, and the analysis was limited to behaviours that distort scientific knowledge: fabrication, falsification, "cooking" of data, etc... Survey questions on plagiarism and other forms of professional misconduct were excluded. The final sample consisted of 21 surveys that were included in the systematic review, and 18 in the meta-analysis. A pooled weighted average of 1.97% (N = 7, 95%CI: 0.86-4.45) of scientists admitted to have fabricated, falsified or modified data or results at least once--a serious form of misconduct by any standard--and up to 33.7% admitted other questionable research practices. In surveys asking about the behaviour of colleagues, admission rates were 14.12% (N = 12, 95% CI: 9.91-19.72) for falsification, and up to 72% for other questionable research practices. Meta-regression showed that self reports surveys, surveys using the words "falsification" or "fabrication", and mailed surveys yielded lower percentages of misconduct. When these factors were controlled for, misconduct was reported more frequently by medical/pharmacological researchers than others. Considering that these surveys ask sensitive questions and have other limitations, it appears likely that this is a conservative estimate of the true prevalence of scientific misconduct.
Topics: Data Collection; Ethics, Research; Regression Analysis; Research Personnel; Scientific Misconduct
PubMed: 19478950
DOI: 10.1371/journal.pone.0005738 -
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 -
BMC Psychiatry Jul 2017Studies investigating the risk factors for or causation of dementia must consider subjects prior to disease onset. To overcome the limitations of prospective studies and... (Review)
Review
BACKGROUND
Studies investigating the risk factors for or causation of dementia must consider subjects prior to disease onset. To overcome the limitations of prospective studies and self-reported recall of information, the use of existing data is key. This review provides a narrative account of dementia ascertainment methods using sources of existing data.
METHODS
The literature search was performed using: MEDLINE, EMBASE, PsychInfo and Web of Science. Included articles reported a UK-based study of dementia in which cases were ascertained using existing data. Existing data included that which was routinely collected and that which was collected for previous research. After removing duplicates, abstracts were screened and the remaining articles were included for full-text review. A quality tool was used to evaluate the description of the ascertainment methodology.
RESULTS
Of the 3545 abstracts screened, 360 articles were selected for full-text review. 47 articles were included for final consideration. Data sources for ascertainment included: death records, national datasets, research databases and hospital records among others. 36 articles used existing data alone for ascertainment, of which 27 used only a single data source. The most frequently used source was a research database. Quality scores ranged from 7/16 to 16/16. Quality scores were better for articles with dementia ascertainment as an outcome. Some papers performed validation studies of dementia ascertainment and most indicated that observed rates of dementia were lower than expected.
CONCLUSIONS
We identified a lack of consistency in dementia ascertainment methodology using existing data. With no data source identified as a "gold-standard", we suggest the use of multiple sources. Where possible, studies should access records with evidence to confirm the diagnosis. Studies should also calculate the dementia ascertainment rate for the population being studied to enable a comparison with an expected rate.
Topics: Cohort Studies; Data Collection; Dementia; Humans; Longitudinal Studies; Prospective Studies; Risk Factors
PubMed: 28673273
DOI: 10.1186/s12888-017-1401-4 -
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 -
Arthroscopy : the Journal of... Feb 2021To report follow-up methodologies, compliance, and existing strategies for handling missing data in national arthroscopy registries collecting patient-reported outcome...
PURPOSE
To report follow-up methodologies, compliance, and existing strategies for handling missing data in national arthroscopy registries collecting patient-reported outcome measures (PROMs).
METHODS
Annual reports, EMBASE, and MEDLINE were queried following the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines to identify national arthroscopy registries reporting follow-up with a validated PROM and sample size greater than 500. Extracted data included weighted compliance in peer-reviewed publications, cumulative compliance throughout the time span of data collection, and missing-data methodologies.
RESULTS
Nine national arthroscopy registries currently collect PROMs, with cumulative rates of follow-up ranging from less than 10% to more than 70%. We identified 36 publications from 5 national registries reporting hip and knee arthroscopies. The weighted mean compliance with PROMs in national registry publications was 56% at 0.5 years, 44% to 59% at 1 year, 40% to 61% at 2 years, 35% to 54% at 5 years, and 40% at 10 years. A missing-data analysis was reported or referenced in 58% of publications.
CONCLUSIONS
In national arthroscopy registries, compliance with 2-year PROMs does not meet traditional follow-up thresholds of 60% or 80% and reporting of missing-data methodologies is inconsistent.
LEVEL OF EVIDENCE
Level IV, systematic review of Level II through IV studies.
Topics: Arthroscopy; Data Collection; Follow-Up Studies; Humans; Patient Compliance; Patient Reported Outcome Measures; Publications; Registries
PubMed: 32835814
DOI: 10.1016/j.arthro.2020.08.007 -
BMC Medical Research Methodology Jan 2011In research, diagrams are most commonly used in the analysis of data and visual presentation of results. However there has been a substantial growth in the use of... (Review)
Review
BACKGROUND
In research, diagrams are most commonly used in the analysis of data and visual presentation of results. However there has been a substantial growth in the use of diagrams in earlier stages of the research process to collect data. Despite this growth, guidance on this technique is often isolated within disciplines.
METHODS
A multidisciplinary systematic review was performed, which included 13 traditional healthcare and non-health-focused indexes, non-indexed searches and contacting experts in the field. English-language articles that used diagrams as a data collection tool and reflected on the process were included in the review, with no restriction on publication date.
RESULTS
The search identified 2690 documents, of which 80 were included in the final analysis. The choice to use diagrams for data collection is often determined by requirements of the research topic, such as the need to understand research subjects' knowledge or cognitive structure, to overcome cultural and linguistic differences, or to understand highly complex subject matter. How diagrams were used for data collection varied by the degrees of instruction for, and freedom in, diagram creation, the number of diagrams created or edited and the use of diagrams in conjunction with other data collection methods. Depending on how data collection is structured, a variety of options for qualitative and quantitative analysis are available to the researcher. The review identified a number of benefits to using diagrams in data collection, including the ease with which the method can be adapted to complement other data collection methods and its ability to focus discussion. However it is clear that the benefits and challenges of diagramming depend on the nature of its application and the type of diagrams used.
DISCUSSION/CONCLUSION
The results of this multidisciplinary systematic review examine the application of diagrams in data collection and the methods for analyzing the unique datasets elicited. Three recommendations are presented. Firstly, the diagrammatic approach should be chosen based on the type of data needed. Secondly, appropriate instructions will depend on the approach chosen. And thirdly, the final results should present examples of original or recreated diagrams. This review also highlighted the need for a standardized terminology of the method and a supporting theoretical framework.
Topics: Communication; Data Collection; Humans; Research Design; Statistics as Topic
PubMed: 21272364
DOI: 10.1186/1471-2288-11-11 -
The International Journal of Behavioral... Mar 2023Accelerometer measures of physical behaviours (physical activity, sedentary behaviour and sleep) in observational studies offer detailed insight into associations with... (Review)
Review
BACKGROUND
Accelerometer measures of physical behaviours (physical activity, sedentary behaviour and sleep) in observational studies offer detailed insight into associations with health and disease. Maximising recruitment and accelerometer wear, and minimising data loss remain key challenges. How varying methods used to collect accelerometer data influence data collection outcomes is poorly understood. We examined the influence of accelerometer placement and other methodological factors on participant recruitment, adherence and data loss in observational studies of adult physical behaviours.
METHODS
The review was in accordance with the Preferred Reporting Items for Systematic Reviews and Meta Analyses (PRISMA). Observational studies of adults including accelerometer measurement of physical behaviours were identified using database (MEDLINE (Ovid), Embase, PsychINFO, Health Management Information Consortium, Web of Science, SPORTDiscus and Cumulative Index to Nursing & Allied Health Literature) and supplementary searches to May 2022. Information regarding study design, accelerometer data collection methods and outcomes were extracted for each accelerometer measurement (study wave). Random effects meta-analyses and narrative syntheses were used to examine associations of methodological factors with participant recruitment, adherence and data loss.
RESULTS
123 accelerometer data collection waves were identified from 95 studies (92.5% from high-income countries). In-person distribution of accelerometers was associated with a greater proportion of invited participants consenting to wear an accelerometer (+ 30% [95% CI 18%, 42%] compared to postal distribution), and adhering to minimum wear criteria (+ 15% [4%, 25%]). The proportion of participants meeting minimum wear criteria was higher when accelerometers were worn at the wrist (+ 14% [ 5%, 23%]) compared to waist. Daily wear-time tended to be higher in studies using wrist-worn accelerometers compared to other wear locations. Reporting of information regarding data collection was inconsistent.
CONCLUSION
Methodological decisions including accelerometer wear-location and method of distribution may influence important data collection outcomes including recruitment and accelerometer wear-time. Consistent and comprehensive reporting of accelerometer data collection methods and outcomes is needed to support development of future studies and international consortia. Review supported by the British Heart Foundation (SP/F/20/150002) and registered (Prospero CRD42020213465).
Topics: Humans; Adult; Accelerometry; Exercise; Data Collection; Sedentary Behavior; Research Design
PubMed: 36890553
DOI: 10.1186/s12966-022-01388-9