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Defining a low-risk birth cohort: a cohort study comparing two perinatal data sets in Ontario, Canada. 定义低风险出生队列:比较加拿大安大略省两个围产期数据集的队列研究。
Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-03-18 eCollection Date: 2024-01-01 DOI: 10.23889/ijpds.v9i1.2364
Elizabeth Kathleen Darling, Olivia Marquez, Alison L Park

Introduction: There are two main data sources for perinatal data in Ontario, Canada: the BORN BIS and CIHI-DAD. Such databases are used for perinatal health surveillance and research, and to guide health care related decisions.

Objectives: Our primary objective was to examine the level of agreement between the BIS and CIHI-DAD. Our secondary objectives were to identify the differences between the data sources when identifying a low-risk birth (LRB) cohort and to understand their implications.

Methods: We conducted a population-based cohort study comparing characteristics and clinical outcomes of all linkable births in BIS and CIHI-DAD between 1st April 2012 and 31st March 2018. We excluded out-of-hospital births, those with invalid healthcare numbers, non-Ontario residents and gestational age <20 weeks. We compared the portion of the cohort that met the criteria of a provincial definition of LRB based on each data source and compared clinical outcomes between the groups.

Results: During the study period, 779,979 eligible births were linkable between the two data sources. After applying the LRB exclusions, there were 129,908 cases in the BIS and 136,184 cases in CIHI-DAD. Most exclusion criteria had almost perfect, substantial or moderate agreement. The agreement for non-cephalic presentation and BMI ≥ 40 kg/m2 (kappa coefficients 0.409 and 0.256, respectively) was fair. Comparison between the two LRB cohorts identified differences in the prevalence of cesarean (14.3% BIS versus 12.0% CIHI-DAD) and NICU admission (8.7% BIS versus 7.5% CIHI-DAD) and only 0.01% difference in the prevalence of ICU admission.

Conclusions: Overall, we found high levels of agreement between the BIS and CIHI-DAD. Identifying a LRB cohort in either database may be appropriate, with the caveat of appropriate understanding of the collection, coding and definition of certain outcomes. The decision for selecting a database may depend on which variables are most important in a particular analysis.

导言:加拿大安大略省有两个主要的围产期数据来源:BORN BIS 和 CIHI-DAD。这些数据库用于围产期健康监测和研究,并为医疗保健相关决策提供指导:我们的首要目标是检查 BIS 和 CIHI-DAD 之间的一致程度。我们的次要目标是确定数据源在识别低风险出生(LRB)队列时的差异,并了解其影响:我们开展了一项基于人群的队列研究,比较了 2012 年 4 月 1 日至 2018 年 3 月 31 日期间 BIS 和 CIHI-DAD 中所有可连接出生婴儿的特征和临床结果。我们排除了医院外分娩、医疗保健号码无效、非安大略省居民和妊娠年龄的分娩结果:在研究期间,有 779,979 例符合条件的新生儿可在两个数据源之间建立联系。应用 LRB 排除法后,BIS 中有 129,908 例,CIHI-DAD 中有 136,184 例。大多数排除标准几乎完全一致、基本一致或中度一致。非颅脑表现和体重指数≥ 40 kg/m2(卡帕系数分别为 0.409 和 0.256)的一致性尚可。比较两个 LRB 队列发现,剖宫产率(14.3% BIS 对 12.0% CIHI-DAD)和入住新生儿重症监护室率(8.7% BIS 对 7.5% CIHI-DAD)存在差异,入住重症监护室率仅有 0.01% 的差异:总体而言,我们发现 BIS 和 CIHI-DAD 的一致性很高。在任何一个数据库中识别低风险人群都是合适的,但要注意对某些结果的收集、编码和定义要有适当的理解。选择数据库的决定可能取决于哪些变量在特定分析中最为重要。
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引用次数: 0
Data resource profile: nutrition data in the VA million veteran program. 数据资源简介:退伍军人事务部百万退伍军人计划中的营养数据。
Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-03-07 eCollection Date: 2023-01-01 DOI: 10.23889/ijpds.v8i6.2366
Xuan-Mai T Nguyen, Yanping Li, Kerry L Ivey, Stacey B Whitbourne, Walter C Willett, Frank B Hu, Kelly Cho, Michael Gaziano, Luc Djousse

Introduction: The Department of Veterans Affairs (VA) Million Veteran Program (MVP) nutrition data is derived from dietary food/beverage intake information collected through a semiquantitative food frequency questionnaire (SFFQ).

Methods: Estimates of dietary energy, nutrient, and non-nutritive food components intakes data were derived from an extensively validated SFFQ, which assessed the habitual frequency of consumption of 61 food items, added sugar, fried food frequency, and 21 nutritional supplements over the 12 months preceding questionnaire administration.

Results: Complete nutrition data was available for 353,418 MVP participants as of 30th September 2021. Overall, 91.5% of MVP participants with nutrition data were male with an average age of 65.7 years at enrollment. Participants who completed the SFFQ were primarily White (82.5%), and Blacks accounted for 13.2% of the responders. Mean ± SD energy intake for 353, 418 MVP participants was 1428 ± 616 kcal/day, which was 1434 ± 617 kcal/day for males and 1364 ± 601 kcal/day for females. Energy intake and information on 322 nutrients and non-nutritive food components is available through contact with MVP for research collaborations at www.research.va.gov/mvp.

Conclusions: The energy and nutrient data derived from MVP SFFQ are an invaluable resource for Veteran health and research. In conjunction with the MVP Lifestyle Survey, electronic health records, and genomic data, MVP nutrition data may be used to assess nutritional status and related risk factors, disease prevalence, and determinants of health that can provide scientific support for the development of evidence-based public health policy and health promotion programs and services for Veterans and general population.

简介:退伍军人事务部(VA)"百万退伍军人计划"(MVP)的营养数据来自于通过半定量食物频率问卷(SFFQ)收集的膳食食物/饮料摄入信息:方法:膳食能量、营养素和非营养性食物成分摄入量的估计数据来自经过广泛验证的 SFFQ,该问卷评估了 61 种食品的习惯性消费频率、添加糖、油炸食品频率以及发放问卷前 12 个月内 21 种营养补充剂的摄入情况:截至 2021 年 9 月 30 日,共有 353 418 名 MVP 参与者获得了完整的营养数据。总体而言,91.5%有营养数据的 MVP 参与者为男性,注册时的平均年龄为 65.7 岁。完成 SFFQ 的参与者主要是白人(82.5%),黑人占 13.2%。353 418 名 MVP 参与者的平均(± SD)能量摄入量为 1428 ± 616 千卡/天,其中男性为 1434 ± 617 千卡/天,女性为 1364 ± 601 千卡/天。能量摄入量以及 322 种营养素和非营养食物成分的信息可通过与 MVP 的研究合作联系获得,网址为 www.research.va.gov/mvp.Conclusions:从 MVP SFFQ 中获得的能量和营养素数据是退伍军人健康和研究的宝贵资源。结合 MVP 生活方式调查、电子健康记录和基因组数据,MVP 营养数据可用于评估营养状况和相关风险因素、疾病发病率和健康决定因素,为制定循证公共卫生政策和促进退伍军人及普通人群健康的计划和服务提供科学支持。
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引用次数: 0
Deprivation effects on length of stay and death of hospitalised COVID-19 patients in Greater Manchester. 贫困对大曼彻斯特地区 COVID-19 住院病人的住院时间和死亡的影响。
Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-02-22 eCollection Date: 2024-01-01 DOI: 10.23889/ijpds.v5i4.1770
Jen Murphy, Mark Elliot, Rathi Ravidrarajah, William Whittaker

Introduction: The World Health Organisation declared a global pandemic in March 2020. The impact of COVID-19 has not been felt equally by all regions and sections of society. The extent to which socio-demographic and deprivation factors have adversely impacted on outcomes is of concern to those looking to 'level-up' and decrease widening health inequalities.

Objectives: In this paper we investigate the impact of deprivation on the outcomes for hospitalised COVID-19 patients in Greater Manchester during the first wave of the pandemic in the UK (30/12/19-2/1/21), controlling for proven risk factors from elsewhere in the literature.

Methods: We fitted Negative Binomial and logistic regression models to NHS administrative data to investigate death from COVID in hospital and length of stay for surviving patients in a sample of adult patients admitted within Greater Manchester (N = 10,372, spell admission start dates from 30/12/2019 to 02/01/2021 inclusive).

Results: Deprivation was associated with death risk for hospitalised patients but not with length of stay. Male sex, co-morbidities and older age was associated with higher death risk. Male sex and co-morbidities were associated with increased length of stay. Black and other ethnicities stayed longer in hospital than White and Asian patients. Period effects were detected in both models with death risk reducing over time, but the length of stay increasing.

Conclusion: Deprivation is important for death risk; however, the picture is complex, and the results of this analysis suggest that the reported COVID related mortality and deprivation linked reductions in life expectancy, may have occurred in the community, rather than in acute settings.

Highlights: Older age and male sex are predictive of longer hospital stays and higher death risk for hospitalised cases in this analysis.Deprivation is associated with death risk but not length of stay for hospitalised patients.Ethnicity is associated with length of stay, but not with death risk.There is a social gradient in health, but these data would suggest that once in the care of an NHS hospital in an acute health episode, outcomes are more equal.

导言:世界卫生组织宣布 COVID-19 于 2020 年 3 月在全球范围内流行。并非所有地区和社会阶层都能平等地感受到 COVID-19 的影响。社会人口和贫困因素在多大程度上对治疗结果产生了不利影响,这是那些希望 "提高治疗水平 "并减少不断扩大的健康不平等现象的人们所关心的问题:在本文中,我们调查了在英国第一波大流行期间(12 月 30/19 日-2/1/21 日),贫困对大曼彻斯特地区 COVID-19 住院患者预后的影响,同时控制了其他文献中已证实的风险因素:我们将负二项模型和逻辑回归模型应用于英国国家医疗服务系统(NHS)的行政数据,以调查大曼彻斯特地区成年住院患者(N = 10,372,拼写入院开始日期为 2019 年 12 月 30 日至 2021 年 1 月 2 日(含))在医院死于 COVID 的情况以及存活患者的住院时间:贫困与住院患者的死亡风险有关,但与住院时间无关。男性性别、合并疾病和年龄越大,死亡风险越高。男性和合并疾病与住院时间延长有关。黑人和其他种族患者的住院时间长于白人和亚裔患者。在两个模型中都发现了周期效应,死亡风险随着时间的推移而降低,但住院时间却在延长:结论:贫困对死亡风险有重要影响;然而,情况是复杂的,分析结果表明,报告中与 COVID 相关的死亡率和与贫困相关的预期寿命缩短可能发生在社区,而不是急诊环境中:在这项分析中,年龄越大、性别越男的患者住院时间越长、死亡风险越高。种族与住院时间有关,但与死亡风险无关。
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引用次数: 0
Variation in colorectal cancer treatment and outcomes in Scotland: real world evidence from national linked administrative health data. 苏格兰结直肠癌治疗和结果的差异:来自全国联网的行政健康数据的现实证据。
Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-02-20 eCollection Date: 2024-01-01 DOI: 10.23889/ijpds.v6i1.2179
Elizabeth Lemmon, Catherine Hanna, Katharina Diernberger, Hugh M Paterson, Sarah H Wild, Holly Ennis, Peter S Hall

Background: Colorectal cancer (CRC) is the fourth most common type of cancer in the United Kingdom and the second leading cause of cancer death. Despite improvements in CRC survival over time, Scotland lags behind its UK and European counterparts. In this study, we carry out an exploratory analysis which aims to provide contemporary, population level evidence on CRC treatment and survival in Scotland.

Methods: We conducted a retrospective population-based analysis of adults with incident CRC registered on the Scottish Cancer Registry (Scottish Morbidity Record 06 (SMR06)) between January 2006 and December 2018. The CRC cohort was linked to hospital inpatient (SMR01) and National Records of Scotland (NRS) deaths records allowing a description of their demographic, diagnostic and treatment characteristics. Cox proportional hazards regression models were used to explore the demographic and clinical factors associated with all-cause mortality and CRC specific mortality after adjusting for patient and tumour characteristics among people identified as early-stage and treated with surgery.

Results: Overall, 32,691 (73%) and 12,184 (27%) patients had a diagnosis of colon and rectal cancer respectively, of whom 55% and 53% were early-stage and treated with surgery. Five year overall survival (CRC specific survival) within this cohort was 72% (82%) and 76% (84%) for patients with colon and rectal cancer respectively. Cox proportional hazards models revealed significant variation in mortality by sex, area-based deprivation and geographic location.

Conclusions: In a Scottish population of patients with early-stage CRC treated with surgery, there was significant variation in risk of death, even after accounting for clinical factors and patient characteristics.

背景:结肠直肠癌 (CRC) 是英国第四大常见癌症,也是第二大癌症死因。尽管随着时间的推移,CRC 的存活率有所提高,但苏格兰仍落后于英国和欧洲同类国家。在本研究中,我们进行了一项探索性分析,旨在提供有关苏格兰 CRC 治疗和存活率的当代人口水平证据:我们对 2006 年 1 月至 2018 年 12 月期间在苏格兰癌症登记处(苏格兰发病率记录 06 (SMR06))登记的成年 CRC 患者进行了基于人群的回顾性分析。CRC队列与医院住院病人(SMR01)和苏格兰国家记录(NRS)死亡记录相关联,可描述其人口学、诊断和治疗特征。在对确定为早期并接受手术治疗的患者的患者特征和肿瘤特征进行调整后,采用 Cox 比例危险回归模型探讨与全因死亡率和 CRC 特异死亡率相关的人口统计学和临床因素:总体而言,分别有32,691名(73%)和12,184名(27%)患者确诊为结肠癌和直肠癌,其中55%和53%为早期患者并接受了手术治疗。结肠癌和直肠癌患者的五年总生存率(CRC特异生存率)分别为72%(82%)和76%(84%)。Cox比例危险模型显示,死亡率因性别、地区贫困程度和地理位置的不同而存在显著差异:在苏格兰接受手术治疗的早期 CRC 患者中,即使考虑到临床因素和患者特征,死亡风险也存在显著差异。
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引用次数: 0
Examining the quality and population representativeness of linked survey and administrative data: guidance and illustration using linked 1958 National Child Development Study and Hospital Episode Statistics data 检验关联调查和行政数据的质量和人口代表性:使用 1958 年国家儿童发展研究和医院事件统计关联数据的指导和说明
Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-01-09 DOI: 10.23889/ijpds.v9i1.2137
Richard Silverwood, Nasir Rajah, Lisa Calderwood, Bianca De Stavola, Katie Harron, George Ploubidis
IntroductionRecent years have seen an increase in linkages between survey and administrative data. It is important to evaluate the quality of such data linkages to discern the likely reliability of ensuing research. Evaluation of linkage quality and bias can be conducted using different approaches, but many of these are not possible when there is a separation of processes for linkage and analysis to help preserve privacy, as is typically the case in the UK (and elsewhere).ObjectivesWe aimed to describe a suite of generalisable methods to evaluate linkage quality and population representativeness of linked survey and administrative data which remain tractable when users of the linked data are not party to the linkage process itself. We emphasise issues particular to longitudinal survey data throughout.MethodsOur proposed approaches cover several areas: i) Linkage rates, ii) Selection into response, linkage consent and successful linkage, iii) Linkage quality, and iv) Linked data population representativeness. We illustrate these methods using a recent linkage between the 1958 National Child Development Study (NCDS; a cohort following an initial 17,415 people born in Great Britain in a single week of 1958) and Hospital Episode Statistics (HES) databases (containing important information regarding admissions, accident and emergency attendances and outpatient appointments at NHS hospitals in England).ResultsOur illustrative analyses suggest that the linkage quality of the NCDS-HES data is high and that the linked sample maintains an excellent level of population representativeness with respect to the single dimension we assessed.ConclusionsThrough this work we hope to encourage providers and users of linked data resources to undertake and publish thorough evaluations. We further hope that providing illustrative analyses using linked NCDS-HES data will improve the quality and transparency of research using this particular linked data resource.
导言近年来,调查数据与行政数据之间的联系越来越多。评估此类数据关联的质量对于确定后续研究的可靠性非常重要。我们的目标是描述一套可通用的方法,用于评估关联调查和行政数据的关联质量和人口代表性,当关联数据的用户不参与关联过程时,这些方法仍然是可行的。我们自始至终强调纵向调查数据所特有的问题。我们建议的方法涵盖以下几个方面:i) 连接率;ii) 响应选择、连接同意和成功连接;iii) 连接质量;以及 iv) 连接数据的人口代表性。我们使用 1958 年全国儿童发展研究(NCDS;1958 年单周在英国出生的最初 17415 人的队列)和医院事件统计(Hospital Episode Statistics,HES)数据库(包含有关英格兰国家医疗服务体系医院的入院、事故和急诊就诊以及门诊预约的重要信息)之间的最新链接来说明这些方法。结果我们的说明性分析表明,NCDS-HES 数据的链接质量很高,就我们评估的单一维度而言,链接样本保持了极好的人口代表性。我们还希望通过提供使用链接的 NCDS-HES 数据进行的说明性分析,提高使用这一特定链接数据资源进行研究的质量和透明度。
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引用次数: 0
Data resource profile: the Edinburgh Child Protection Dataset - a new linked administrative data source of children referred to Child Protection paediatric services in Edinburgh, Scotland 数据资源简介:爱丁堡儿童保护数据集--苏格兰爱丁堡儿童保护儿科服务转介儿童的新链接行政数据源
Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-12-14 DOI: 10.23889/ijpds.v8i6.2173
Louise Marryat, Jacqueline Stephen, Jacqueline Mok, Sharon Vincent, Charlotte Kirk, Lindsay Logie, John Devaney, Rachael Wood
IntroductionChild maltreatment affects a substantial number of children. However current evidence relies on either longitudinal studies, which are complex and resource-intensive, or linked data studies based on social services data, which is arguably the tip of the iceberg in terms of children who are maltreated. Reliable, linked, population-level data on children referred to services due to suspected abuse or neglect will increase our ability to examine risk factors for, and outcomes following, abuse and neglect.ObjectiveThe objective of this project was to create a linkable population level dataset, The Edinburgh Child Protection Dataset (ECPD), comprising all children referred to the Edinburgh Child Protection Paediatric healthcare team due to a concern about their welfare between 1995 and 2015.MethodsThe paper presents the process for creating the dataset. The analyses provide examples of available data from the main referrals dataset between 1995 and 2011 (where data quality was highest).Results19,969 referrals were captured, relating to 11,653 children. Of the 19,969 referrals, a higher proportion were girls (54%), although boys were referred for physical abuse more often than girls (41% versus 30%). Younger children were more likely to be referred for physical abuse (35% of 0-4 year olds vs. 27% 15+): older children were more likely to be referred for sexual abuse (48% of 15+ years vs. 18% of 0-4 years). Most referrals came from social workers (46%) or police (31%).ConclusionsThe ECPD offers a unique insight into the characteristics of referrals to child protection paediatric services over a key period in the history of child protection in Scotland. It is hoped that by making these data available to researchers, and able to be easily linked with both mother and child current and future health records, evidence will be created to better support maltreated children and monitor changes over time.
导言:儿童虐待影响着大量儿童。然而,目前的证据要么依赖于复杂且资源密集型的纵向研究,要么依赖于基于社会服务数据的关联数据研究,而后者可以说是受虐待儿童的冰山一角。关于因涉嫌虐待或忽视而被转介到服务机构的儿童的可靠、链接的人口级数据将提高我们研究虐待和忽视的风险因素及其结果的能力。该项目的目标是创建一个可链接的人口级数据集--爱丁堡儿童保护数据集(ECPD),其中包括 1995 年至 2015 年间因担心其福利而被转介到爱丁堡儿童保护儿科医疗团队的所有儿童。分析提供了 1995 年至 2011 年间(数据质量最高)主要转介数据集的可用数据示例。结果共收集了 19969 份转介数据,涉及 11653 名儿童。在 19969 起转介案件中,女孩所占比例较高(54%),但男孩因身体虐待被转介的比例高于女孩(41% 对 30%)。年龄较小的儿童更有可能因身体虐待而被转介(0-4 岁儿童占 35%,15 岁以上儿童占 27%):年龄较大的儿童更有可能因性虐待而被转介(15 岁以上儿童占 48%,0-4 岁儿童占 18%)。大多数转介来自社会工作者(46%)或警察(31%)。我们希望,通过向研究人员提供这些数据,并将其与母亲和儿童当前及未来的健康记录方便地联系起来,可以为更好地支持受虐待儿童和监测随时间推移而发生的变化提供证据。
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引用次数: 0
Machine learning models in trusted research environments -- understanding operational risks 可信研究环境中的机器学习模型 -- 了解操作风险
Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-12-14 DOI: 10.23889/ijpds.v8i1.2165
F. Ritchie, Amy Tilbrook, Christian Cole, Emily Jefferson, Susan Krueger, Esma Mansouri-Bensassi, Simon Rogers, Jim Q. Smith
IntroductionTrusted research environments (TREs) provide secure access to very sensitive data for research. All TREs operate manual checks on outputs to ensure there is no residual disclosure risk. Machine learning (ML) models require very large amount of data; if this data is personal, the TRE is a well-established data management solution. However, ML models present novel disclosure risks, in both type and scale.ObjectivesAs part of a series on ML disclosure risk in TREs, this article is intended to introduce TRE managers to the conceptual problems and work being done to address them.MethodsWe demonstrate how ML models present a qualitatively different type of disclosure risk, compared to traditional statistical outputs. These arise from both the nature and the scale of ML modelling.ResultsWe show that there are a large number of unresolved issues, although there is progress in many areas. We show where areas of uncertainty remain, as well as remedial responses available to TREs.ConclusionsAt this stage, disclosure checking of ML models is very much a specialist activity. However, TRE managers need a basic awareness of the potential risk in ML models to enable them to make sensible decisions on using TREs for ML model development.
导言受信任的研究环境(TRE)为研究提供了对非常敏感数据的安全访问。所有 TRE 都会对输出结果进行人工检查,以确保不存在残余披露风险。机器学习 (ML) 模型需要大量数据;如果这些数据是个人数据,则 TRE 是一种成熟的数据管理解决方案。作为 TRE 中的 ML 披露风险系列文章的一部分,本文旨在向 TRE 管理人员介绍概念性问题以及为解决这些问题而开展的工作。这些风险源于 ML 建模的性质和规模。结果我们表明,尽管在许多领域取得了进展,但仍有大量问题尚未解决。结论在现阶段,对 ML 模型进行披露检查在很大程度上是一项专业活动。然而,TRE 管理者需要对 ML 模型的潜在风险有基本的认识,以便在使用 TRE 进行 ML 模型开发时做出明智的决定。
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引用次数: 0
De-identification of Free Text Data containing Personal Health Information: A Scoping Review of Reviews 对包含个人健康信息的自由文本数据进行去身份化处理:审查范围界定审查
Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-12-12 DOI: 10.23889/ijpds.v8i1.2153
Bekelu Negash, Alan Katz, Christine J. Neilson, Moniruzzaman Moni, Marc Nesca, Alexander Singer, J. Enns
IntroductionUsing data in research often requires that the data first be de-identified, particularly in the case of health data, which often include Personal Identifiable Information (PII) and/or Personal Health Identifying Information (PHII). There are established procedures for de-identifying structured data, but de-identifying clinical notes, electronic health records, and other records that include free text data is more complex. Several different ways to achieve this are documented in the literature. This scoping review identifies categories of de-identification methods that can be used for free text data.MethodsWe adopted an established scoping review methodology to examine review articles published up to May 9, 2022, in Ovid MEDLINE; Ovid Embase; Scopus; the ACM Digital Library; IEEE Explore; and Compendex. Our research question was: What methods are used to de-identify free text data? Two independent reviewers conducted title and abstract screening and full-text article screening using the online review management tool Covidence.ResultsThe initial literature search retrieved 3,312 articles, most of which focused primarily on structured data. Eighteen publications describing methods of de-identification of free text data met the inclusion criteria for our review. The majority of the included articles focused on removing categories of personal health information identified by the Health Insurance Portability and Accountability Act (HIPAA). The de-identification methods they described combined rule-based methods or machine learning with other strategies such as deep learning.ConclusionOur review identifies and categorises de-identification methods for free text data as rule-based methods, machine learning, deep learning and a combination of these and other approaches. Most of the articles we found in our search refer to de-identification methods that target some or all categories of PHII. Our review also highlights how de-identification systems for free text data have evolved over time and points to hybrid approaches as the most promising approach for the future.
导言在研究中使用数据通常需要首先对数据进行去标识化处理,尤其是健康数据,其中通常包括个人身份信息 (PII) 和/或个人健康识别信息 (PHII)。对结构化数据进行去标识化已有既定程序,但对临床笔记、电子健康记录和其他包含自由文本数据的记录进行去标识化则更为复杂。文献中记载了几种不同的实现方法。本范围综述确定了可用于自由文本数据的去标识化方法的类别。方法我们采用既定的范围综述方法,研究了截至 2022 年 5 月 9 日在 Ovid MEDLINE、Ovid Embase、Scopus、ACM 数字图书馆、IEEE Explore 和 Compendex 上发表的综述文章。我们的研究问题是使用什么方法对自由文本数据进行去标识化?两位独立审稿人使用在线审稿管理工具 Covidence 进行了标题和摘要筛选以及全文筛选。结果最初的文献检索共检索到 3312 篇文章,其中大部分主要侧重于结构化数据。有 18 篇介绍自由文本数据去标识化方法的文章符合我们的审查纳入标准。所收录的文章大多侧重于删除《健康保险可携性与责任法案》(HIPAA)所确定的个人健康信息类别。我们的综述将自由文本数据的去标识化方法分为基于规则的方法、机器学习、深度学习以及这些方法和其他方法的组合。我们在搜索中发现的大多数文章都提到了针对某些或所有 PHII 类别的去标识化方法。我们的综述还强调了自由文本数据去标识化系统是如何随着时间的推移而演变的,并指出混合方法是未来最有前途的方法。
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引用次数: 0
Four questions to guide decision-making for data sharing and integration. 指导数据共享和整合决策的四个问题。
Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-10-04 eCollection Date: 2023-01-01 DOI: 10.23889/ijpds.v8i2.2159
Amy Hawn Nelson, Sharon Zanti

Introduction: This paper presents a Four Question Framework to guide data integration partners in building a strong governance and legal foundation to support ethical data use.

Objectives: While this framework was developed based on work in the United States that routinely integrates public data, it is meant to be a simple, digestible tool that can be adapted to any context.

Methods: The framework was developed through a series of public deliberation workgroups and 15 years of field experience working with a diversity of data integration efforts across the United States.

Results: The Four Questions-Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)?-should be considered within an established data governance framework and alongside core partners to determine whether and how to move forward when building an Integrated Data System (IDS) and also at each stage of a specific data project. We discuss these questions in depth, with a particular focus on the role of governance in establishing legal and ethical data use. In addition, we provide example data governance structures from two IDS sites and hypothetical scenarios that illustrate key considerations for the Four Question Framework.

Conclusions: A robust governance process is essential for determining whether data sharing and integration is legal, ethical, and a good idea within the local context. This process is iterative and as relational as it is technical, which means authentic collaboration across partners should be prioritized at each stage of a data use project. The Four Questions serve as a guide for determining whether to undertake data sharing and integration and should be regularly revisited throughout the life of a project.

Highlights: Strong data governance has five qualities: it is purpose-, value-, and principle-driven; strategically located; collaborative; iterative; and transparent.Through a series of public deliberation workgroups and 15 years of field experience, we developed a Four Question Framework to determine whether and how to move forward with building an IDS and at each stage of a data sharing and integration project.The Four Questions-Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)?-should be carefully considered within established data governance processes and among core partners.

导言:本文提出了一个 "四问框架",以指导数据集成合作伙伴建立强大的治理和法律基础,支持合乎道德的数据使用:虽然该框架是根据美国日常整合公共数据的工作制定的,但它旨在成为一个简单易懂的工具,可适用于任何情况:方法:该框架是通过一系列公共审议工作组和 15 年来在美国各地与各种数据整合工作打交道的实地经验制定的:四个问题--这样做合法吗?这符合道德规范吗?这是个好主意吗?我们如何知道(以及由谁来决定)?这四个问题应在既定的数据管理框架内与核心合作伙伴一起考虑,以确定在建立集成数据系统 (IDS) 时以及在具体数据项目的每个阶段是否以及如何向前推进。我们将深入讨论这些问题,尤其关注治理在建立合法和合乎道德的数据使用方面的作用。此外,我们还提供了两个 IDS 站点的数据管理结构示例和假设情况,说明了四问框架的主要考虑因素:健全的管理流程对于确定数据共享和整合是否合法、合乎道德以及在当地环境下是否是一个好主意至关重要。这一过程是迭代性的,既是技术性的,也是关系性的,这意味着在数据使用项目的每个阶段都应优先考虑合作伙伴之间的真实合作。四个问题 "可作为确定是否进行数据共享和整合的指南,并应在项目的整个生命周期中定期重新审视:通过一系列公开讨论工作组和 15 年的实地经验,我们制定了 "四问框架",以确定是否以及如何在数据共享和整合项目的各个阶段推进 IDS 建设。这符合道德规范吗?这是个好主意吗?我们如何知道(由谁决定)?
{"title":"Four questions to guide decision-making for data sharing and integration.","authors":"Amy Hawn Nelson, Sharon Zanti","doi":"10.23889/ijpds.v8i2.2159","DOIUrl":"10.23889/ijpds.v8i2.2159","url":null,"abstract":"<p><strong>Introduction: </strong>This paper presents a Four Question Framework to guide data integration partners in building a strong governance and legal foundation to support ethical data use.</p><p><strong>Objectives: </strong>While this framework was developed based on work in the United States that routinely integrates public data, it is meant to be a simple, digestible tool that can be adapted to any context.</p><p><strong>Methods: </strong>The framework was developed through a series of public deliberation workgroups and 15 years of field experience working with a diversity of data integration efforts across the United States.</p><p><strong>Results: </strong>The Four Questions-<i>Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)?</i>-should be considered within an established data governance framework and alongside core partners to determine whether and how to move forward when building an Integrated Data System (IDS) and also at each stage of a specific data project. We discuss these questions in depth, with a particular focus on the role of governance in establishing legal and ethical data use. In addition, we provide example data governance structures from two IDS sites and hypothetical scenarios that illustrate key considerations for the Four Question Framework.</p><p><strong>Conclusions: </strong>A robust governance process is essential for determining whether data sharing and integration is legal, ethical, and a good idea within the local context. This process is iterative and as relational as it is technical, which means authentic collaboration across partners should be prioritized at each stage of a data use project. The Four Questions serve as a guide for determining whether to undertake data sharing and integration and should be regularly revisited throughout the life of a project.</p><p><strong>Highlights: </strong>Strong data governance has five qualities: it is purpose-, value-, and principle-driven; strategically located; collaborative; iterative; and transparent.Through a series of public deliberation workgroups and 15 years of field experience, we developed a Four Question Framework to determine whether and how to move forward with building an IDS and at each stage of a data sharing and integration project.The Four Questions-<i>Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)?</i>-should be carefully considered within established data governance processes and among core partners.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"8 4","pages":"2159"},"PeriodicalIF":0.0,"publicationDate":"2023-10-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10900076/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139991374","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Seasonal purchase of antihistamines and ovarian cancer risk in the Cancer Loyalty Card Study (CLOCS): results from an observational case-control study 癌症忠诚度卡研究(CLOCS)中季节性购买抗组胺药与卵巢癌症风险:观察性病例对照研究结果
Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-06-04 DOI: 10.1101/2023.05.30.23290729
H. Brewer, Q. Jiang, S. Sundar, Y. Hirst, J. Flanagan
Objective: Antihistamine use has previously been associated with a reduction in incidence of ovarian cancer, particularly in premenopausal women. Herein, we investigate antihistamine exposure in relation to ovarian cancer risk using a novel data resource by examining purchase histories from retailer loyalty card data. Study Design: A subset of participants from the Cancer Loyalty Card Study (CLOCS) for which purchase histories were available were analysed in this study. Cases (n=153) were women in the UK with a first diagnosis of ovarian cancer between Jan 2018 to Jan 2022. Controls (n=120) were women in the UK without a diagnosis of ovarian cancer. Up to 6 years of purchase history was retrieved from two participating high street retailers from 2014 to 2022. Main outcome measures: Logistic regression was used to estimate the odds ratio (OR) and 95% confidence intervals (CIs) for ovarian cancer associated with antihistamine purchases, ever versus never, adjusting for age and oral contraceptive use. The association was stratified by season of purchase, age over and under 50 years, ovarian cancer histology, and family history. Results: Ever purchasing antihistamines was not significantly associated with ovarian cancer overall in this small study (OR:0.68, 95% CI: 0.39,1.19). However, antihistamine purchases were significantly associated with reduced ovarian cancer risk when purchased only in spring and/or summer (OR: 0.37, 95% CI: 0.17,0.82) compared with purchasing all year (OR: 0.99, 95% CI: 0.51,1.92). In the stratified analysis, the association was strongest in non-serous ovarian cancer (OR: 0.41, 95% CI:0.18,0.93). Conclusions: Antihistamine purchase is associated with reduced ovarian cancer risk when purchased seasonally in spring and summer. However, larger studies and more research is required to understand the mechanisms of reduced ovarian cancer risk related to seasonal purchases of antihistamines and allergies.
目的:抗组胺药物的使用与卵巢癌症发病率的降低有关,尤其是在绝经前妇女中。在此,我们通过检查零售商忠诚度卡数据中的购买历史,使用一种新的数据资源,研究抗组胺药物暴露与卵巢癌症风险的关系。研究设计:本研究分析了癌症忠诚度卡研究(CLOCS)的一部分参与者,他们有购买历史。病例(n=153)为2018年1月至2022年1月期间首次诊断为卵巢癌症的英国女性。对照组(n=120)为英国未被诊断为卵巢癌症的女性。2014年至2022年,从两家参与的商业街零售商那里检索到了长达6年的购买历史。主要结果指标:使用Logistic回归来估计卵巢癌症与抗组胺药购买相关的比值比(OR)和95%置信区间(CI),无论是否购买,均根据年龄和口服避孕药使用进行调整。根据购买季节、50岁以上和50岁以下年龄、卵巢癌症组织学和家族史对这种关联进行分层。结果:在这项小型研究中,购买抗组胺药与卵巢癌症总体无显著相关性(OR:0.68,95%CI:0.39,1.19),与全年购买(or:0.99,95%CI:0.51,1.92)相比,仅在春季和/或夏季购买抗组胺药与降低卵巢癌症风险显著相关(or:0.37,95%CI:0.17,0.82)。在分层分析中,结论:春季和夏季季节性购买抗组胺药物可降低卵巢癌症风险。然而,需要更大规模的研究和更多的研究来了解与季节性购买抗组胺药和过敏相关的卵巢癌症风险降低的机制。
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引用次数: 0
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International Journal of Population Data Science
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