RECORD LINKAGE

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  • 文章类型: Systematic Review
    GDPR的实施旨在为整个欧盟/欧洲经济区的个人数据保护建立一个总体框架。直接从队列参与者收集的数据的联系,可能作为健康研究的重要工具,必须遵守数据保护规则和隐私权。我们的目标是调查将未成年人的队列数据与常规收集的教育和健康数据相比较的法律可能性。方法:对EUR-Lex和葡萄牙GDPR实施的国家法律数据库中公开发布的法律法规进行了法律比较分析和范围审查,芬兰,挪威,以及荷兰及其相关的国家法规,旨在为2021年4月30日之前实施的健康研究建立记录链接。结果:GDPR不能确保成员国之间数据保护立法的完全统一,从而为国家立法提供灵活性。处理个人数据的例外情况,例如,公共利益和科学研究,必须在欧盟/欧洲经济区或国家法律中规定。国家解释的差异在跨国研究和记录链接方面造成了障碍:葡萄牙需要书面同意和道德批准;芬兰允许链接大多未经国家社会和卫生数据许可证管理局的同意;挪威基于区域伦理委员会的批准和适当的信息技术保密;荷兰主要基于选择退出系统和数据保护影响评估。结论:尽管GDPR是最重要的法律框架,将队列数据与常规收集的健康和教育数据联系起来时,国家立法执行最重要。由于国家的解释各不相同,健康研究迫切需要法律干预,以平衡个人的信息自决权和公共利益。在欧盟/欧洲经济区进行更多的协调可能会有所帮助,但对于那些未经明确同意已经为注册和研究公共利益开辟了余地的成员国来说,不应该有害。
    Background: The GDPR was implemented to build an overarching framework for personal data protection across the EU/EEA. Linkage of data directly collected from cohort participants, potentially serving as a prominent tool for health research, must respect data protection rules and privacy rights. Our objective was to investigate law possibilities of linking cohort data of minors with routinely collected education and health data comparing EU/EEA member states. Methods: A legal comparative analysis and scoping review was conducted of openly accessible published laws and regulations in EUR-Lex and national law databases on GDPR\'s implementation in Portugal, Finland, Norway, and the Netherlands and its connected national regulations purposing record linkage for health research that have been implemented up until April 30, 2021. Results: The GDPR does not ensure total uniformity in data protection legislation across member states offering flexibility for national legislation. Exceptions to process personal data, e.g., public interest and scientific research, must be laid down in EU/EEA or national law. Differences in national interpretation caused obstacles in cross-national research and record linkage: Portugal requires written consent and ethical approval; Finland allows linkage mostly without consent through the national Social and Health Data Permit Authority; Norway when based on regional ethics committee\'s approval and adequate information technology safeguarding confidentiality; the Netherlands mainly bases linkage on the opt-out system and Data Protection Impact Assessment. Conclusions: Though the GDPR is the most important legal framework, national legislation execution matters most when linking cohort data with routinely collected health and education data. As national interpretation varies, legal intervention balancing individual right to informational self-determination and public good is gravely needed for health research. More harmonization across EU/EEA could be helpful but should not be detrimental in those member states which already opened a leeway for registries and research for the public good without explicit consent.
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  • 文章类型: Systematic Review
    背景:无家可归是一个复杂的社会和公共卫生挑战。关于有无家可归经历(PEH)的人的人口水平健康和社会护理相关预测因素以及后果的信息有限。专注于人口亚组或临时问卷调查以收集数据的研究对于整个人口健康监测和规划的适用性相对有限。这项研究的目的是寻找和综合有关危险因素的信息,以及后果,在使用常规管理数据的全人群研究中经历无家可归。
    方法:我们使用EMBASE进行了系统搜索,MEDLINE,Cochrane图书馆,从开始到2023年2月发表的用于英语研究的护理和联合健康文献(CINAHL)和PsycINFO研究数据库的累积指数,报告了有关无家可归,健康和社会护理相关预测因素和后果的行政数据分析。我们遵循系统评价和荟萃分析(PRISMA)指南的首选报告项目。
    结果:在所审查的1224篇文章中,30份出版物符合纳入标准。纳入的研究考察了广泛的主题领域,每个人使用的无家可归定义都有很大差异。研究分为几个主题领域:死亡率,发病率和COVID-19;医疗保健使用和重新入院;养老院入住和收容所;以及其他(例如就业,犯罪受害)。研究报告说,无家可归的人的身心健康状况比普通人群差。无家可归的人更有可能有更高的住院风险,更有可能使用急诊室,与一般人群相比,死亡率更高,需要重症监护或死于COVID-19的风险更高。此外,无家可归的人更有可能被监禁或失业。与那些在以后的生活中经历过无家可归的人相比,对那些小时候无家可归的人的影响最大。
    结论:这是对全人群观察性研究的首次系统评价,该研究使用行政数据来确定与无家可归个体相关的原因和后果。虽然科学文献提供了一些与无家可归相关的可能风险因素的证据,对这一研究课题的研究有限,差距仍然存在。需要更标准化的最佳实践方法,以更好地了解与无家可归相关的原因和后果。
    Homelessness is a complex societal and public health challenge. Limited information exists about the population-level health and social care-related predictors and consequences of persons with lived experience of homelessness (PEH). Studies that focus on population subgroups or ad hoc questionnaires to gather data are of relatively limited generalisability to whole-population health surveillance and planning. The aim of this study was to find and synthesise information about the risk factors for, and consequences of, experiencing homelessness in whole-population studies that used routine administrative data.
    We performed a systematic search using EMBASE, MEDLINE, the Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PsycINFO research databases for English-language studies published from inception until February 2023 that reported analyses of administrative data about homelessness and health and social care-related predictors and consequences. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.
    Of the 1224 articles reviewed, 30 publications met the inclusion criteria. The included studies examined a wide range of topic areas, and the homelessness definitions used in each varied considerably. Studies were categorised into several topic areas: Mortality, morbidity and COVID-19; health care usage and hospital re-admission; care home admission and shelter stay; and other (e.g. employment, crime victimisation). The studies reported that that the physical and mental health of people who experience homelessness was worse than that of the general population. Homeless individuals were more likely to have higher risk of hospitalisation, more likely to use emergency departments, have higher mortality rates and were at greater risk of needing intensive care or of dying from COVID-19 compared with general population. Additionally, homeless individuals were more likely to be incarcerated or unemployed. The effects were strongest for those who experienced being homeless as a child compared to those who experienced being homeless later on in life.
    This is the first systematic review of whole-population observational studies that used administrative data to identify causes and consequences associated with individuals who are experiencing homelessness. While the scientific literature provides evidence on some of the possible risk factors associated with being homeless, research into this research topic has been limited and gaps still remain. There is a need for more standardised best practice approaches to understand better the causes and consequences associated with being homeless.
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  • 文章类型: Review
    背景:从监狱释放后死亡风险增加是公共卫生问题。这次范围审查的目的是调查,绘制并总结有关前成年囚犯中与毒品有关的死亡的记录联系研究的证据。
    方法:MEDLINE,EMBASE,使用关键字/索引标题搜索了PsychINFO和WebofScience的研究(2011年1月至2021年9月)。两位作者使用纳入和排除标准独立筛选了所有标题和摘要,随后筛选了完整的出版物。与第三作者讨论了差异。一位作者使用数据图表表单从所有包含的出版物中提取数据。第二作者独立地从大约三分之一的出版物中提取数据。将数据输入到MicrosoftExcel表中并清理用于分析。使用STATA中的随机效应DerSimonian-Laird模型(在可能的情况下)合并标准化死亡率(SMR)。
    结果:按标题和摘要筛选了3680种出版物,对109份出版物进行了全面筛选;包括45份出版物。前两周(4项研究)合并的药物相关SMR为27.07(95CI13.32-55.02;I2=93.99%),前3-4周(3项研究)为10.17(95CI3.74-27.66;I2=83.83%),发布后的前1年为15.58(95CI7.05-34.40;I2=97.99%)(3项研究),发布后的任何时间为6.99(95CI4.13-11.83;I2=99.14%)。然而,研究之间的估计差异很大。在研究设计方面存在相当大的异质性,研究规模,location,方法和发现。只有四项研究报告了质量评估清单/技术的使用。
    结论:这项范围审查发现,出狱后与药物相关的死亡风险增加,特别是在释放后的前两周,尽管前囚犯中与毒品有关的死亡风险在第一年仍然很高。由于研究设计和方法不一致,只有少数研究适合SMR的汇总分析,因此证据综合有限。
    There are public health concerns about an increased risk of mortality after release from prison. The objectives of this scoping review were to investigate, map and summarise evidence from record linkage studies about drug-related deaths among former adult prisoners.
    MEDLINE, EMBASE, PsychINFO and Web of Science were searched for studies (January 2011- September 2021) using keywords/index headings. Two authors independently screened all titles and abstracts using inclusion and exclusion criteria and subsequently screened full publications. Discrepancies were discussed with a third author. One author extracted data from all included publications using a data charting form. A second author independently extracted data from approximately one-third of the publications. Data were entered into Microsoft Excel sheets and cleaned for analysis. Standardised mortality ratios (SMRs) were pooled (where possible) using a random-effects DerSimonian-Laird model in STATA.
    A total of 3680 publications were screened by title and abstract, and 109 publications were fully screened; 45 publications were included. The pooled drug-related SMR was 27.07 (95%CI 13.32- 55.02; I 2 = 93.99%) for the first two weeks (4 studies), 10.17 (95%CI 3.74-27.66; I 2 = 83.83%) for the first 3-4 weeks (3 studies) and 15.58 (95%CI 7.05-34.40; I 2 = 97.99%) for the first 1 year after release (3 studies) and 6.99 (95%CI 4.13-11.83; I 2 = 99.14%) for any time after release (5 studies). However, the estimates varied markedly between studies. There was considerable heterogeneity in terms of study design, study size, location, methodology and findings. Only four studies reported the use of a quality assessment checklist/technique.
    This scoping review found an increased risk of drug-related death after release from prison, particularly during the first two weeks after release, though drug-related mortality risk remained elevated for the first year among former prisoners. Evidence synthesis was limited as only a small number of studies were suitable for pooled analyses for SMRs due to inconsistencies in study design and methodology.
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  • 文章类型: Journal Article
    目标:在中国使用常规收集的数据进行医学研究的可能性尚不清楚。我们试图进行范围审查,以系统地描述可能对临床研究有价值的中国全国常规收集的数据集。方法:我们搜索公共数据库和政府机构的网站,和非政府组织。我们纳入了全国范围内常规收集的与传染病有关的数据库,非传染性疾病,受伤,以及母婴健康。数据库特征,包括疾病区域,数据保管,数据量,提取并总结了更新频率和可访问性。结果:确定了70个数据库,其中46种与传染病有关,20涉及非传染性疾病,1对伤害,3对母婴健康。数据量从低于1000到超过100,000条记录不等。超过一半(64%)的数据库可用于主要包括传染病的医学研究。结论:我国常规采集数据数量较多。在医学研究中使用此类数据的挑战仍然存在于各种可获取性方面。常规收集数据的潜力也可能适用于其他低收入和中等收入国家。
    Objectives: The potential for using routinely collected data for medical research in China remains unclear. We sought to conduct a scoping review to systematically characterise nation-wide routinely collected datasets in China that may be of value for clinical research. Methods: We searched public databases and the websites of government agencies, and non-government organizations. We included nation-wide routinely collected databases related to communicable diseases, non-communicable diseases, injuries, and maternal and child health. Database characteristics, including disease area, data custodianship, data volume, frequency of update and accessibility were extracted and summarised. Results: There were 70 databases identified, of which 46 related to communicable diseases, 20 to non-communicable diseases, 1 to injury and 3 to maternal and child health. The data volume varied from below 1000 to over 100,000 records. Over half (64%) of the databases were accessible for medical research mostly comprising communicable diseases. Conclusion: There are large quantities of routinely collected data in China. Challenges to using such data in medical research remain with various accessibility. The potential of routinely collected data may also be applicable to other low- and middle-income countries.
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  • 文章类型: Systematic Review
    我们的研究旨在确定共同的主题,并评估澳大利亚糖尿病数据链接研究的质量。
    本系统评价是根据系统评价和荟萃分析的首选报告项目(PRISMA声明)制定的。搜索了六个生物医学数据库和澳大利亚人口健康研究网络(PHRN)网站。进行了叙事综合,以全面确定共同主题和知识差距。使用涉及数据链接的研究指南来评估纳入研究的方法学质量。
    经过筛选和手工搜索,118项研究纳入最终分析。数据链接出版物证实了糖尿病患者的负面健康结果,报告的糖尿病及其并发症的危险因素,并发现初级保健使用和住院之间呈负相关。链接数据用于验证数据源和糖尿病仪器。研究糖尿病患者的医疗支出和药物不良反应(ADR)的出版物有限。关于方法学评估,在纳入的研究中,有关链接的重要信息报告不足.
    在未来,更多最新的数据链接研究解决了当代澳大利亚环境中糖尿病及其并发症的成本,以及评估最近批准的抗糖尿病药物不良反应的研究,是必需的。
    Our study aimed to identify the common themes, knowledge gaps and to evaluate the quality of data linkage research on diabetes in Australia.
    This systematic review was developed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (the PRISMA Statement). Six biomedical databases and the Australian Population Health Research Network (PHRN) website were searched. A narrative synthesis was conducted to comprehensively identify the common themes and knowledge gaps. The guidelines for studies involving data linkage were used to appraise methodological quality of included studies.
    After screening and hand-searching, 118 studies were included in the final analysis. Data linkage publications confirmed negative health outcomes in people with diabetes, reported risk factors for diabetes and its complications, and found an inverse association between primary care use and hospitalization. Linked data were used to validate data sources and diabetes instruments. There were limited publications investigating healthcare expenditure and adverse drug reactions (ADRs) in people with diabetes. Regarding methodological assessment, important information about the linkage performed was under-reported in included studies.
    In the future, more up to date data linkage research addressing costs of diabetes and its complications in a contemporary Australian setting, as well as research assessing ADRs of recently approved antidiabetic medications, are required.
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  • 文章类型: Journal Article
    There is increasing interest in automatically identifying advertisements related to sex trafficking in online review sites. The main challenge is to identify the changing patterns in text reviews that are used to indicate illegal businesses. This work describes a novel means of identifying illegal business advertisements using natural language processing and machine learning. The method relies on building a training set of reviews of known illegal businesses. This training data is created by integrating a small high precision set of known illegal businesses (Rubmaps) with a large collection of online reviews from a general purpose review site (Yelp). Standard natural language pre-processing techniques are then applied to the text reviews and converted into a bag-of-words model with Term frequency-inverse document weighting. The resulting Document-Term matrix is used to train a classifier and then to identify suspicious activity from the remaining reviews. This approach therefore leverages a high-precision, low-recall dataset to identify relevant instances from the large low-precision, high-recall dataset. The approach was evaluated on a collection of 456,050 reviews from the Yelp online forum with a variety of machine learning algorithms and different number of text features. The method achieved a f1-score of 0.77 with a random forests classifier. The number of text features could also be reduced from 1,473 to 447 for a compact classifier with only a small drop in accuracy.
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  • 文章类型: Journal Article
    Family health history is a well-established risk factor for many health conditions but the systematic collection of health histories, particularly for multiple generations and multiple family members, can be challenging. Routinely-collected electronic databases in a select number of sites worldwide offer a powerful tool to conduct multigenerational health research for entire populations. At these sites, administrative and healthcare records are used to construct familial relationships and objectively-measured health histories. We review and synthesize published literature to compare the attributes of routinely-collected, linked databases for three European sites (Denmark, Norway, Sweden) and three non-European sites (Canadian province of Manitoba, Taiwan, Australian state of Western Australia) with the capability to conduct population-based multigenerational health research. Our review found that European sites primarily identified family structures using population registries, whereas non-European sites used health insurance registries (Manitoba and Taiwan) or linked data from multiple sources (Western Australia). Information on familial status was reported to be available as early as 1947 (Sweden); Taiwan had the fewest years of data available (1995 onwards). All centres reported near complete coverage of familial relationships for their population catchment regions. Challenges in working with these data include differentiating biological and legal relationships, establishing accurate familial linkages over time, and accurately identifying health conditions. This review provides important insights about the benefits and challenges of using routinely-collected, population-based linked databases for conducting population-based multigenerational health research, and identifies opportunities for future research within and across the data-intensive environments at these six sites.
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  • 文章类型: Journal Article
    There has long been debate about the extent to which mental disorders contribute to suicide. We aimed to examine the evidence on the contribution of mental disorders to suicide among record linkage studies.
    We performed a systematic search using eight major health databases for English-language studies published between 1 January 2000 and 11 June 2018 that linked collected data on mental disorders and suicide. We then conducted a meta-analysis to assess risk of suicide conferred by mental disorders.
    Our search identified 20 articles representing 13 unique studies. The pooled rate ratio (RR) was 13.2 (95% CI 8.6-20.3) for psychotic disorders, 12.3 (95% CI 8.9-17.1) for mood disorders, 8.1 (95% CI 4.6-14.2) for personality disorders, 4.4 (95% CI 2.9-6.8) for substance use disorders, and 4.1 (95% CI 2.4-6.9) for anxiety disorders in the general population. The overall pooled RR for these mental disorders was 7.5 (95% CI 6.6-8.6). The population attributable risk of mental disorders was up to 21%.
    The overall heterogeneity between studies was very high.
    Our findings underline the important role of mental disorders in suicide. This suggests that ongoing efforts are required to improve access to and quality of mental health care to prevent suicide by people with mental disorders.
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  • 文章类型: Journal Article
    The purpose of this paper is to review the major sources of data on mortality, morbidity and health in Europe and in other developed regions in order to examine their potential for analysing mortality and morbidity levels and trends. The review is primarily focused on routinely collected information covering a whole country. No attempt is made to draw up an inventory of sources by country; the paper deals instead with the pros and cons of each source for mortality and morbidity studies in demography. While each source considered separately can already yield useful, though partial, results, record linkage among data sources can significantly improve the analysis. Record linkage can also lead to the detection of possible causal associations that could eventually be confirmed. More generally, Big Data can reveal changing mortality and morbidity trends and patterns that could lead to preventive measures being taken rather than more costly curative ones.
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