Pub Date : 2023-09-14DOI: 10.23889/ijpds.v8i2.2241
Imogen Rogers, Max Cooper, Anjum Memon, Elizabeth Ford
ObjectiveResilience in healthcare has been defined as “the capacity to adapt to challenges and changes at different system levels, to maintain high quality care”. This work aimed to investigate how the challenges posed by the presence of comorbidities impacted on the delivery of timely lung cancer/mesothelioma diagnosis in older patients. MethodsPatients with incident lung cancer/mesothelioma aged at least 65y in 2019 were identified in the Clinical Practice Research Datalink and linked Cancer Registry data. Diagnostic interval (DI) was defined as time from first presentation with a symptom suggestive of lung cancer/mesothelioma to diagnosis date, including symptoms up to 12 months pre-diagnosis. Co-morbidities were grouped as four “alternative explanation” conditions, which might mimic lung cancer symptoms, and ten “competing demand” conditions, which might delay cancer referral by competing for the clinician’s time. Other factors considered were usual consultation frequency, smoking and BMI. Associations with DI were investigated using multivariate linear regression. ResultsData were available for 10424 lung cancer/mesothelioma patients. In adjusted analyses DI was longer in patients with “alternative explanation” conditions, increasing by 27.6 (95%CI 22.9 – 32.4 days) and 72.0 (65.6, 78.4) days in patients with one and two or more conditions respectively. Number of competing demand conditions was not associated with DI in adjusted analyses. However, both usual consultation frequency and increasing consultation frequency in the year before diagnosis were independently positively associated with diagnostic interval, which was 23.0 (17.8, 28.3) days higher in patients with an increased consultation rate. DI was also increased in ever-smokers and in underweight patients compared to those in the normal weight range. ConclusionThe presence of conditions offering alternative explanations for lung cancer/mesothelioma symptom is associated with delayed diagnosis. Patients with higher consultation frequencies also had longer DIs, implying competing demand is also an issue. Strategies to increase the resilience of healthcare systems to these challenges to timely diagnosis should be considered.
{"title":"The effect of comorbidities on diagnostic interval for lung cancer and mesothelioma: A cohort study using linked data from the Clinical Practice Research Datalink and the Cancer Registry","authors":"Imogen Rogers, Max Cooper, Anjum Memon, Elizabeth Ford","doi":"10.23889/ijpds.v8i2.2241","DOIUrl":"https://doi.org/10.23889/ijpds.v8i2.2241","url":null,"abstract":"ObjectiveResilience in healthcare has been defined as “the capacity to adapt to challenges and changes at different system levels, to maintain high quality care”. This work aimed to investigate how the challenges posed by the presence of comorbidities impacted on the delivery of timely lung cancer/mesothelioma diagnosis in older patients. \u0000MethodsPatients with incident lung cancer/mesothelioma aged at least 65y in 2019 were identified in the Clinical Practice Research Datalink and linked Cancer Registry data. Diagnostic interval (DI) was defined as time from first presentation with a symptom suggestive of lung cancer/mesothelioma to diagnosis date, including symptoms up to 12 months pre-diagnosis. Co-morbidities were grouped as four “alternative explanation” conditions, which might mimic lung cancer symptoms, and ten “competing demand” conditions, which might delay cancer referral by competing for the clinician’s time. Other factors considered were usual consultation frequency, smoking and BMI. Associations with DI were investigated using multivariate linear regression. \u0000ResultsData were available for 10424 lung cancer/mesothelioma patients. In adjusted analyses DI was longer in patients with “alternative explanation” conditions, increasing by 27.6 (95%CI 22.9 – 32.4 days) and 72.0 (65.6, 78.4) days in patients with one and two or more conditions respectively. Number of competing demand conditions was not associated with DI in adjusted analyses. However, both usual consultation frequency and increasing consultation frequency in the year before diagnosis were independently positively associated with diagnostic interval, which was 23.0 (17.8, 28.3) days higher in patients with an increased consultation rate. DI was also increased in ever-smokers and in underweight patients compared to those in the normal weight range. \u0000ConclusionThe presence of conditions offering alternative explanations for lung cancer/mesothelioma symptom is associated with delayed diagnosis. Patients with higher consultation frequencies also had longer DIs, implying competing demand is also an issue. Strategies to increase the resilience of healthcare systems to these challenges to timely diagnosis should be considered.","PeriodicalId":132937,"journal":{"name":"International Journal for Population Data Science","volume":"61 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134913245","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-09-14DOI: 10.23889/ijpds.v8i2.2204
Tim McSweeney
ObjectivesThe social and economic costs associated with serious and organised crime (SOC) are considerable: recently estimated by the National Audit Office to be £37 billion annually. Despite this, we know little about the extent and nature of SOC being prosecuted before the courts, or the outcomes associated with these cases.
MethodsSecondary analysis of over 12.6 million linked, individual-level, de-identified records from the Data First initiative relating to the criminal courts and prison system in England and Wales (E&W) over an eight-year period (2013-2020).
ResultsThis unique study provides estimates for the rate and volumes of SOC appearing before the Crown Court in E&W and describes the characteristics of the defendants charged with these offences, and their associated outcomes. Using a comparative design, the study also assessed the severity and geographic distribution of offending associated with SOC; the extent to which prosecutions were discontinued, dismissed, or resulted in an acquittal (and the factors most predictive of this outcome); and the rate and frequency of reappearances before the criminal courts over time.
ConclusionThe findings contribute towards enhancing government and law enforcement resilience in this area by developing a better understanding of SOC and the effectiveness of responses to it. This evidence informs key Ministry of Justice priorities linked to the effective and efficient delivery of justice and upholding the rule of law.
{"title":"A national data linkage study to assess the extent, nature and outcomes of serious and organised crime prosecuted before the criminal courts in England and Wales","authors":"Tim McSweeney","doi":"10.23889/ijpds.v8i2.2204","DOIUrl":"https://doi.org/10.23889/ijpds.v8i2.2204","url":null,"abstract":"ObjectivesThe social and economic costs associated with serious and organised crime (SOC) are considerable: recently estimated by the National Audit Office to be £37 billion annually. Despite this, we know little about the extent and nature of SOC being prosecuted before the courts, or the outcomes associated with these cases.
 MethodsSecondary analysis of over 12.6 million linked, individual-level, de-identified records from the Data First initiative relating to the criminal courts and prison system in England and Wales (E&W) over an eight-year period (2013-2020).
 ResultsThis unique study provides estimates for the rate and volumes of SOC appearing before the Crown Court in E&W and describes the characteristics of the defendants charged with these offences, and their associated outcomes. Using a comparative design, the study also assessed the severity and geographic distribution of offending associated with SOC; the extent to which prosecutions were discontinued, dismissed, or resulted in an acquittal (and the factors most predictive of this outcome); and the rate and frequency of reappearances before the criminal courts over time.
 ConclusionThe findings contribute towards enhancing government and law enforcement resilience in this area by developing a better understanding of SOC and the effectiveness of responses to it. This evidence informs key Ministry of Justice priorities linked to the effective and efficient delivery of justice and upholding the rule of law.","PeriodicalId":132937,"journal":{"name":"International Journal for Population Data Science","volume":"37 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134913326","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-09-14DOI: 10.23889/ijpds.v8i2.2297
Joanne Given, Ester Garne, Joan Morris, Maria Loane, None EUROlinkCAT Working Group
ObjectiveTo explore risk factors for hospital admission, and length of stay (LOS) in hospital, among children with congenital anomalies (CAs) and reference children without CAs in Europe.
MethodA European population-based data-linkage cohort study was conducted including children with CAs (born 1995-2014) registered in seven EUROCAT CA registries and children without CAs (reference children) living in the same geographical areas. Data on hospitalisation and LOS (1995-2015) for all children aged <1 year and 1-4 years were obtained by linkage to hospital discharge databases.
The effects of birth cohort, sex, gestational age, maternal age, multiple birth and socioeconomic status on risk of admission and LOS were estimated using Cox’s Proportional Hazards and negative binomial regression models. Random effects meta-analysis and quantile estimation methods were used to pool the estimates.
ResultsA total of 79,036 children with CAs and 2,016,042 reference children were linked to hospital records. Children with CAs born pre-term (<32 weeks) were more than twice as likely to be admitted (adj. HR 2.35, 95% CI 1.45-3.80) and had almost 8 times longer stays (adj. IRR 7.95, 95% CI 6.12-10.33) compared to children with CAs born at term. Reference children were almost six times as likely to be admitted (adj. HR 5.87, 95% CI 3.10-11.09), and had almost 50 times longer stays (adj. IRR 49.49, 30.92-79.21) compared to reference children born at term. Children with CAs and reference children born preterm were also at increased risk of admission at 1-4 years of age, although the effect was less than for children aged <1 year.
ConclusionThe impact of risk factors for admission to hospital and LOS were similar between children with CAs and reference children but the impact was often greater in reference children. This study highlights the value of linking to hospital discharge records to obtain population-based information on morbidity for counselling parents.
目的探讨欧洲先天性异常儿童(CAs)和对照儿童(无CAs)住院及住院时间(LOS)的危险因素。方法进行了一项以欧洲人口为基础的数据链接队列研究，包括在七个EUROCAT CA登记处登记的CAs儿童(1995-2014年出生)和生活在同一地理区域的无CAs儿童(参考儿童)。所有1岁和1-4岁儿童的住院和LOS(1995-2015)数据通过与医院出院数据库的联系获得。采用Cox比例风险和负二项回归模型估计出生队列、性别、胎龄、产妇年龄、多胎和社会经济地位对入院风险和LOS的影响。随机效应荟萃分析和分位数估计方法用于汇总估计。
结果共有79,036名ca患儿和2,016,042名参考患儿与医院记录相关联。与足月出生的患儿相比，早产(32周)的患儿入院的可能性是足月出生患儿的两倍多(相对危险度2.35,95% CI 1.45-3.80)，住院时间几乎是足月出生患儿的8倍(相对危险度7.95,95% CI 6.12-10.33)。与足月出生的对照患儿相比，对照患儿入院的可能性几乎是对照患儿的6倍(HR 5.87, 95% CI 3.10-11.09)，住院时间几乎是对照患儿的50倍(ir 49.49, 30.92-79.21)。患有ca的儿童和早产的参照儿童在1-4岁时入院的风险也增加，尽管其影响小于1岁儿童。结论危险因素对ca患儿入院和LOS的影响与对照患儿相似，但对照患儿的影响往往更大。这项研究强调了与医院出院记录相联系的价值，以便为咨询父母获得基于人口的发病率信息。
{"title":"Risk factors for admission and length of stay in hospital for children with and without congenital anomalies: A EUROlinkCAT study","authors":"Joanne Given, Ester Garne, Joan Morris, Maria Loane, None EUROlinkCAT Working Group","doi":"10.23889/ijpds.v8i2.2297","DOIUrl":"https://doi.org/10.23889/ijpds.v8i2.2297","url":null,"abstract":"ObjectiveTo explore risk factors for hospital admission, and length of stay (LOS) in hospital, among children with congenital anomalies (CAs) and reference children without CAs in Europe.
 MethodA European population-based data-linkage cohort study was conducted including children with CAs (born 1995-2014) registered in seven EUROCAT CA registries and children without CAs (reference children) living in the same geographical areas. Data on hospitalisation and LOS (1995-2015) for all children aged <1 year and 1-4 years were obtained by linkage to hospital discharge databases.
 The effects of birth cohort, sex, gestational age, maternal age, multiple birth and socioeconomic status on risk of admission and LOS were estimated using Cox’s Proportional Hazards and negative binomial regression models. Random effects meta-analysis and quantile estimation methods were used to pool the estimates.
 ResultsA total of 79,036 children with CAs and 2,016,042 reference children were linked to hospital records. Children with CAs born pre-term (<32 weeks) were more than twice as likely to be admitted (adj. HR 2.35, 95% CI 1.45-3.80) and had almost 8 times longer stays (adj. IRR 7.95, 95% CI 6.12-10.33) compared to children with CAs born at term. Reference children were almost six times as likely to be admitted (adj. HR 5.87, 95% CI 3.10-11.09), and had almost 50 times longer stays (adj. IRR 49.49, 30.92-79.21) compared to reference children born at term. Children with CAs and reference children born preterm were also at increased risk of admission at 1-4 years of age, although the effect was less than for children aged <1 year.
 ConclusionThe impact of risk factors for admission to hospital and LOS were similar between children with CAs and reference children but the impact was often greater in reference children. This study highlights the value of linking to hospital discharge records to obtain population-based information on morbidity for counselling parents.","PeriodicalId":132937,"journal":{"name":"International Journal for Population Data Science","volume":"61 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134913332","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-09-14DOI: 10.23889/ijpds.v8i2.2335
Hiromi Yumoto, Matt Cole, Ceren Ozgen, Liza Jabbour
ObjectivesTo investigate the extent to which firm sorting effects influence the refugee-native earning gap in the Netherlands, and to examine the role of pay-setting effects in widening or narrowing the gap.
MethodUsing Dutch wage and refugee registration data from 2014 to 2021, we employ a two-way effects model, also called the AKM model, and the Blinder-Oxaca decompose model, in order to decompose the refugee-native pay gap into firm sorting and pay-setting effects.
ResultsOur findings indicate that refugees in the Netherlands earn only a third of the average earnings of native workers and that 17% of the pay gap can be explained by firm sorting effects. Pay-setting effects are found to be negative, indicating that the pay-setting channel works to reduce pay gaps between natives and refugees. Limited access to higher-paying firms may lead to a mismatch between refugees' abilities and earnings, exacerbating the adverse impact of firm sorting.
ConclusionTo promote refugee economic assimilation, higher-paying firms should provide accessible job opportunities based on fair assessments of refugees' skills. Our analysis underscores the importance of understanding and addressing the role of firm sorting in widening refugee-native pay gaps, and highlights the potential of pay-setting effects to reduce such gaps.
{"title":"The role of firms in the economic assimilation of refugees","authors":"Hiromi Yumoto, Matt Cole, Ceren Ozgen, Liza Jabbour","doi":"10.23889/ijpds.v8i2.2335","DOIUrl":"https://doi.org/10.23889/ijpds.v8i2.2335","url":null,"abstract":"ObjectivesTo investigate the extent to which firm sorting effects influence the refugee-native earning gap in the Netherlands, and to examine the role of pay-setting effects in widening or narrowing the gap.
 MethodUsing Dutch wage and refugee registration data from 2014 to 2021, we employ a two-way effects model, also called the AKM model, and the Blinder-Oxaca decompose model, in order to decompose the refugee-native pay gap into firm sorting and pay-setting effects.
 ResultsOur findings indicate that refugees in the Netherlands earn only a third of the average earnings of native workers and that 17% of the pay gap can be explained by firm sorting effects. Pay-setting effects are found to be negative, indicating that the pay-setting channel works to reduce pay gaps between natives and refugees. Limited access to higher-paying firms may lead to a mismatch between refugees' abilities and earnings, exacerbating the adverse impact of firm sorting.
 ConclusionTo promote refugee economic assimilation, higher-paying firms should provide accessible job opportunities based on fair assessments of refugees' skills. Our analysis underscores the importance of understanding and addressing the role of firm sorting in widening refugee-native pay gaps, and highlights the potential of pay-setting effects to reduce such gaps.","PeriodicalId":132937,"journal":{"name":"International Journal for Population Data Science","volume":"61 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134913475","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-09-14DOI: 10.23889/ijpds.v8i2.2247
Piotr Teodorowski, Elisa Jones, Saiqa Ahmed, Naheed Tahir, Lucy Frith
ObjectivesPublic involvement and engagement have been suggested as a way to establish public support for big data research, yet there has been no review exploring how these activities could facilitate this. Therefore, this scoping review aimed to explore public involvement and engagement in big data research.
MethodsFollowing Arksey and O’Malley’s methodology, we systematically searched the following databases: CINAHL, Health Research Premium Collection, PubMed, Scopus and Web of Science for papers published between 2010-2021. Additional manual searches took place. These included the first 100 hits in Google search, journals (BMC Research Involvement and Engagement, International Journal of Population Data Science and Health Expectations) and grey literature (Patient Outcome Research Institute database, first 100 hits were screened). We extracted data using a standardised form. We then organised it in a descriptive and narrative way. A system logic model was developed to understand the complexity of this topic.
ResultsFifty-three papers were identified as eligible for inclusion in our review. The findings indicate that public involvement and engagement have the potential to improve public trust and accountability for data resharing for research. However, there is limited literature actually evaluating these activities. The findings suggest that the public can be meaningfully involved and engaged in big data research, both in terms of individual research projects and data governance, but there is no one standardised approach to do it. Therefore, we developed an initial system logic model to map relevant aspects of the involvement and engagement activities. These include which communities to reach, the context (e.g. ethical, legal aspects or public views), the design and delivery of activities, and outcomes.
ConclusionDespite the growing literature on public involvement and engagement in big data research, more research is needed as there are few primary empirical studies exploring involvement and engagement. We suggest using the system logic model we developed when reflecting on issues that might be relevant in organising these activities.
公众参与和参与已被建议作为建立公众对大数据研究支持的一种方式，但尚未有评论探讨这些活动如何促进这一目标。因此，本综述旨在探讨公众对大数据研究的参与和参与。
方法采用Arksey和O 'Malley的方法，系统检索了2010-2021年间发表的论文:CINAHL、Health Research Premium Collection、PubMed、Scopus和Web of Science。还进行了额外的人工搜索。这些包括谷歌搜索的前100个点击，期刊(BMC研究参与和参与，国际人口数据科学和健康期望期刊)和灰色文献(患者结果研究所数据库，前100个点击被筛选)。我们使用标准化表格提取数据。然后我们以描述和叙述的方式组织它。开发了一个系统逻辑模型来理解这个主题的复杂性。
结果53篇论文被纳入我们的综述。调查结果表明，公众参与和参与有可能提高公众对研究数据再共享的信任和问责制。然而，实际评价这些活动的文献有限。研究结果表明，公众可以有意义地参与和从事大数据研究，无论是个人研究项目还是数据治理，但没有一种标准化的方法来做到这一点。因此，我们开发了一个初始的系统逻辑模型来映射参与和参与活动的相关方面。这些包括要接触哪些社区、背景(例如道德、法律方面或公众意见)、活动的设计和实施以及结果。
尽管关于公众参与和参与大数据研究的文献越来越多，但关于公众参与和参与的初步实证研究很少，还需要更多的研究。我们建议在考虑与组织这些活动相关的问题时，使用我们开发的系统逻辑模型。
{"title":"Public involvement and engagement in big data research: A scoping review","authors":"Piotr Teodorowski, Elisa Jones, Saiqa Ahmed, Naheed Tahir, Lucy Frith","doi":"10.23889/ijpds.v8i2.2247","DOIUrl":"https://doi.org/10.23889/ijpds.v8i2.2247","url":null,"abstract":"ObjectivesPublic involvement and engagement have been suggested as a way to establish public support for big data research, yet there has been no review exploring how these activities could facilitate this. Therefore, this scoping review aimed to explore public involvement and engagement in big data research.
 MethodsFollowing Arksey and O’Malley’s methodology, we systematically searched the following databases: CINAHL, Health Research Premium Collection, PubMed, Scopus and Web of Science for papers published between 2010-2021. Additional manual searches took place. These included the first 100 hits in Google search, journals (BMC Research Involvement and Engagement, International Journal of Population Data Science and Health Expectations) and grey literature (Patient Outcome Research Institute database, first 100 hits were screened). We extracted data using a standardised form. We then organised it in a descriptive and narrative way. A system logic model was developed to understand the complexity of this topic.
 ResultsFifty-three papers were identified as eligible for inclusion in our review. The findings indicate that public involvement and engagement have the potential to improve public trust and accountability for data resharing for research. However, there is limited literature actually evaluating these activities. The findings suggest that the public can be meaningfully involved and engaged in big data research, both in terms of individual research projects and data governance, but there is no one standardised approach to do it. Therefore, we developed an initial system logic model to map relevant aspects of the involvement and engagement activities. These include which communities to reach, the context (e.g. ethical, legal aspects or public views), the design and delivery of activities, and outcomes.
 ConclusionDespite the growing literature on public involvement and engagement in big data research, more research is needed as there are few primary empirical studies exploring involvement and engagement. We suggest using the system logic model we developed when reflecting on issues that might be relevant in organising these activities.","PeriodicalId":132937,"journal":{"name":"International Journal for Population Data Science","volume":"22 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134913827","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-09-14DOI: 10.23889/ijpds.v8i2.2320
Dean Fell, Loulwa Al Rasheed-Wright
Objectives
Improve and refine BOLD's delivery of its four pilot projects via feedback on acceptable uses and forms of analysis of shared data.
Inform how BOLD communicates its aims and progress for maximum clarity and transparency.
Understand the impact of BOLD's data management on the level of trust in the program.
MethodsInitial workshops were conducted with expert intermediary organisations, such as charities, who have a deep understanding of each of the audiences’ attitudes and needs. This was to explain the purpose of the project to the intermediary organisations and to gain their feedback on the approach and materials.
Fieldwork was undertaken with 82 participants from across the four vulnerability audiences, using a combination of methods to ensure full participation from a range of individuals with differing levels of need.
Participants were presented with information about BOLD's purpose, objectives, and three example scenarios related to their respective pilot to prompt useful discussions.
Results
Participants in the BOLD program pilots generally support data sharing to improve public services.
They view the program positively, have similar experiences across pilot areas, and reflect on its relevance to a range of audiences.
However, some lack experience with issues addressed by BOLD. Concerns exist regarding negative impacts and scepticism towards government.
BOLD use cases should prioritise four principles: relevance, impact, clarity, and non-stigmatisation.
Intermediary organisations are crucial for engaging with pilot audiences.
ConclusionBOLD is a three-year cross government pilot project that links social policy datasets to better support individuals with complex needs. It aims to improve outcomes by providing new evidence and insight into how services delivered in one part of government affect outcomes in another. This research was commissioned to inform how to take the BOLD programme forward, by engaging and consulting with relevant audiences in an ethical and transparent way.
The published findings are informing the delivery of BOLD and improving and enhancing our understanding of the impact of BOLD's data management on trust.
{"title":"Improving lives by linking data: Views from groups with complex needs. Commissioned by the cross-government Better Outcomes through Linked Data programme and the Centre for Data Ethics and Innovation, and delivered by the research agency Britain Thinks","authors":"Dean Fell, Loulwa Al Rasheed-Wright","doi":"10.23889/ijpds.v8i2.2320","DOIUrl":"https://doi.org/10.23889/ijpds.v8i2.2320","url":null,"abstract":"Objectives
 
 Improve and refine BOLD's delivery of its four pilot projects via feedback on acceptable uses and forms of analysis of shared data.
 Inform how BOLD communicates its aims and progress for maximum clarity and transparency.
 Understand the impact of BOLD's data management on the level of trust in the program.
 
 MethodsInitial workshops were conducted with expert intermediary organisations, such as charities, who have a deep understanding of each of the audiences’ attitudes and needs. This was to explain the purpose of the project to the intermediary organisations and to gain their feedback on the approach and materials.
 Fieldwork was undertaken with 82 participants from across the four vulnerability audiences, using a combination of methods to ensure full participation from a range of individuals with differing levels of need.
 Participants were presented with information about BOLD's purpose, objectives, and three example scenarios related to their respective pilot to prompt useful discussions.
 Results
 
 Participants in the BOLD program pilots generally support data sharing to improve public services.
 They view the program positively, have similar experiences across pilot areas, and reflect on its relevance to a range of audiences.
 However, some lack experience with issues addressed by BOLD. Concerns exist regarding negative impacts and scepticism towards government.
 BOLD use cases should prioritise four principles: relevance, impact, clarity, and non-stigmatisation.
 Intermediary organisations are crucial for engaging with pilot audiences.
 
 ConclusionBOLD is a three-year cross government pilot project that links social policy datasets to better support individuals with complex needs. It aims to improve outcomes by providing new evidence and insight into how services delivered in one part of government affect outcomes in another. This research was commissioned to inform how to take the BOLD programme forward, by engaging and consulting with relevant audiences in an ethical and transparent way.
 The published findings are informing the delivery of BOLD and improving and enhancing our understanding of the impact of BOLD's data management on trust.","PeriodicalId":132937,"journal":{"name":"International Journal for Population Data Science","volume":"111 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134913840","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-09-14DOI: 10.23889/ijpds.v8i2.2340
Kate Lewis, Maria Peppa, Bianca De Stavola, Pia Hardelid, Ruth Gilbert
ObjectivesWe provide a national overview of survival to primary school and recorded special educational needs (SEN) provision among children with hospital identified major congenital anomalies (MCAs) born in England. We also report changes before and after government reform of SEN in 2014.
MethodsWe created a cohort of 6,180,400 singleton children born in England between 1 September 2003 and 31 August 2013 using linked administrative health and education records (from the ‘ECHILD’ database). MCAs were identified using hospital admission and mortality records during infancy. We used at least one record of SEN in state-school records as a proxy for SEN provision. We quantified: survival to age 5 using Kaplan-Meier survival analysis; the prevalence of recorded SEN during primary school Years 1 to 6; and the difference in proportion of children with recorded SEN in Year 1 before and after the 2014 government SEN reforms.
ResultsChildren with any MCA had 5-year survival rates of 95.1% (95% confidence interval, CI, 95.0, 95.2), compared with 99.7% (95% CI 99.7, 99.7) among children without a MCA. 41.5% (75,202/181,328) of children with an MCA attending state-school between Year 1 and 6 had any recorded SEN compared with 25.6% (1,282,979/5,008,624) of children without a MCA. Of the 12 system-specific MCA subgroups, children with chromosomal, nervous system and eye anomalies had the largest prevalence of recorded SEN. The prevalence of recorded SEN decreased by 4.9% (95% CI -5.3, -4.4) for children with any MCA compared with a reduction of 4.3% (95% CI -4.4, -4.2) for children without a MCA, when comparing pupils in Year 1 before and after 2014.
ConclusionRecorded SEN among children with hospital identified MCAs was markedly higher than for those without MCAs, however more than half had no recorded SEN. Our findings suggest government reform in 2014 reduced SEN provision for children with MCAs.
目的:我们对在英国出生的经医院鉴定为主要先天性异常(MCAs)的儿童的小学存活率和特殊教育需求(SEN)提供的记录进行了全国性概述。我们还报告了2014年政府改革SEN前后的变化。
方法:我们使用相关的行政健康和教育记录(来自“ECHILD”数据库)创建了2003年9月1日至2013年8月31日在英格兰出生的6180,400名独生子女队列。根据婴儿时期的住院和死亡率记录确定mca。我们在公立学校的记录中至少使用了一个特殊教育水平的记录作为特殊教育水平提供的代理。我们使用Kaplan-Meier生存分析进行量化:存活至5岁;小学一至六年级的特殊教育情况;以及2014年政府SEN改革前后第一年记录SEN的儿童比例的差异。
结果任何MCA患儿的5年生存率为95.1%(95%可信区间，CI, 95.0, 95.2)，而无MCA患儿的5年生存率为99.7% (95% CI, 99.7, 99.7)。41.5%(75,202/181,328)在一年级至六年级就读公立学校的MCA儿童有任何记录的SEN，而没有MCA的儿童为25.6%(1,282,979/5,008,624)。在12个系统特异性MCA亚组中，有染色体、神经系统和眼睛异常的儿童记录SEN的患病率最高。当比较2014年前后的一年级学生时，有任何MCA的儿童记录SEN的患病率下降了4.9% (95% CI -5.3， -4.4)，而没有MCA的儿童记录SEN的患病率下降了4.3% (95% CI -4.4， -4.2)。结论医院确定的mca患儿中记录的SEN明显高于非mca患儿，但超过一半的患儿没有记录SEN。我们的研究结果表明，2014年政府改革减少了对mca患儿的SEN提供。
{"title":"Primary-school recorded special educational needs in children born with major congenital anomalies in England: A population-based study using the Education and Child Health Insights from Linked Data database","authors":"Kate Lewis, Maria Peppa, Bianca De Stavola, Pia Hardelid, Ruth Gilbert","doi":"10.23889/ijpds.v8i2.2340","DOIUrl":"https://doi.org/10.23889/ijpds.v8i2.2340","url":null,"abstract":"ObjectivesWe provide a national overview of survival to primary school and recorded special educational needs (SEN) provision among children with hospital identified major congenital anomalies (MCAs) born in England. We also report changes before and after government reform of SEN in 2014.
 MethodsWe created a cohort of 6,180,400 singleton children born in England between 1 September 2003 and 31 August 2013 using linked administrative health and education records (from the ‘ECHILD’ database). MCAs were identified using hospital admission and mortality records during infancy. We used at least one record of SEN in state-school records as a proxy for SEN provision. We quantified: survival to age 5 using Kaplan-Meier survival analysis; the prevalence of recorded SEN during primary school Years 1 to 6; and the difference in proportion of children with recorded SEN in Year 1 before and after the 2014 government SEN reforms.
 ResultsChildren with any MCA had 5-year survival rates of 95.1% (95% confidence interval, CI, 95.0, 95.2), compared with 99.7% (95% CI 99.7, 99.7) among children without a MCA. 41.5% (75,202/181,328) of children with an MCA attending state-school between Year 1 and 6 had any recorded SEN compared with 25.6% (1,282,979/5,008,624) of children without a MCA. Of the 12 system-specific MCA subgroups, children with chromosomal, nervous system and eye anomalies had the largest prevalence of recorded SEN. The prevalence of recorded SEN decreased by 4.9% (95% CI -5.3, -4.4) for children with any MCA compared with a reduction of 4.3% (95% CI -4.4, -4.2) for children without a MCA, when comparing pupils in Year 1 before and after 2014.
 ConclusionRecorded SEN among children with hospital identified MCAs was markedly higher than for those without MCAs, however more than half had no recorded SEN. Our findings suggest government reform in 2014 reduced SEN provision for children with MCAs.","PeriodicalId":132937,"journal":{"name":"International Journal for Population Data Science","volume":"214 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134913931","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-09-14DOI: 10.23889/ijpds.v8i2.2349
James Hartley-Binns
The Integrated Data Service (IDS) is a cross-government initiative, designed to transform the way de-identified data is made available for vital research and decision-making about our society and economy.
It will improve the capability for researchers, allowing them to link data effectively through state-of-the-art systems and technologies.
The IDS will enable more collaborative data research and analysis to take place.
The service will enable access to data sets from a range of sources, across government departments and Devolved Administrations, presented alongside analytical and visualisation tools. Linking data to help answer complex policy questions is essential for addressing the cross-cutting and complex issues required to improve today’s society. The Reference Data Management Framework (RDMF) makes it possible to link data on a consistent and convenient basis.
The IDS will link data to provide otherwise untapped insight and to allow rapid analysis on a growing range of integrated data assets. This cross-government service will provide policy makers with robust and collaborative evidence, informing the decisions made across UK society.
This session will introduce IDS to our academic audience, highlighting the benefits for data suppliers, analysts and the wider public that will be available through standardised data, streamlined data linkage, outputs, and the state-of-the-art dissemination technology.
Building on the IDS showcase in April 2023, the presenter will outline the timeline for the continued development of the IDS, and how researchers and existing SRS users can get involved. They will also discuss the ongoing SRS to IDS transition.
The service is open to analysts within the UK government, devolved administrations, and external accredited researchers, such as scientists, academics, and researchers, allowing them to carry out analysis that addresses major societal challenges.
You will learn the advantages of IDS, and the progression the service has made in the last year. The audience will have an increased awareness of the IDS, how to get involved and what the potential impact will be for analysts, users, contributors, and the public.
{"title":"Data at your fingertips: How the Integrated Data Service is helping to promote collaboration and efficient decision-making in the UK","authors":"James Hartley-Binns","doi":"10.23889/ijpds.v8i2.2349","DOIUrl":"https://doi.org/10.23889/ijpds.v8i2.2349","url":null,"abstract":"The Integrated Data Service (IDS) is a cross-government initiative, designed to transform the way de-identified data is made available for vital research and decision-making about our society and economy.
 It will improve the capability for researchers, allowing them to link data effectively through state-of-the-art systems and technologies.
 The IDS will enable more collaborative data research and analysis to take place.
 The service will enable access to data sets from a range of sources, across government departments and Devolved Administrations, presented alongside analytical and visualisation tools. Linking data to help answer complex policy questions is essential for addressing the cross-cutting and complex issues required to improve today’s society. The Reference Data Management Framework (RDMF) makes it possible to link data on a consistent and convenient basis.
 The IDS will link data to provide otherwise untapped insight and to allow rapid analysis on a growing range of integrated data assets. This cross-government service will provide policy makers with robust and collaborative evidence, informing the decisions made across UK society.
 This session will introduce IDS to our academic audience, highlighting the benefits for data suppliers, analysts and the wider public that will be available through standardised data, streamlined data linkage, outputs, and the state-of-the-art dissemination technology.
 Building on the IDS showcase in April 2023, the presenter will outline the timeline for the continued development of the IDS, and how researchers and existing SRS users can get involved. They will also discuss the ongoing SRS to IDS transition.
 The service is open to analysts within the UK government, devolved administrations, and external accredited researchers, such as scientists, academics, and researchers, allowing them to carry out analysis that addresses major societal challenges.
 You will learn the advantages of IDS, and the progression the service has made in the last year. The audience will have an increased awareness of the IDS, how to get involved and what the potential impact will be for analysts, users, contributors, and the public.","PeriodicalId":132937,"journal":{"name":"International Journal for Population Data Science","volume":"11 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134913948","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-09-14DOI: 10.23889/ijpds.v8i2.2330
Theodora Pouliou, Lucy Griffiths, Rowena Bailey, Sinead Brophy, Jo Davies, Ronan Lyons, Rebecca Pedrick-Case, Gareth Stratton, Richard Fry
ObjectivesYouth obesity has increased substantially in recent decades; however, the potential role of the built environment in mitigating these trends is unclear. This study examines whether more walkable neighbourhoods are associated with lower levels of overweight/obesity for adolescents compared to less walkable neighbourhoods, after considering the potential role of socio-economic and lifestyle characteristics.
MethodsWe examine overweight/obesity levels for all singleton 14 years-old children living in Wales, using the UK Millennium Cohort Study. Children are classified as healthy weight, overweight and obese using international age and sex adjusted cut-offs for body mass index (BMI). The built environment is assessed using the active living environments (ALE) index for 2017-2018 classified into 5 categories (1-low walkability and 5 – high walkability). We apply regression analysis and adjust for children characteristics (e.g., physical activity), parental socio-economic circumstances and lifestyle choices (e.g., maternal education, physical activity).
ResultsWe assess the hypothesis that the built environment is associated with adolescents’ overweight/obesity levels and examine how much of this association could be modified by parental socioeconomic circumstances and lifestyle choices. The ALE index is higher in urban compared to rural areas. To capture variations in Wales’ population, we are conducting a stratified analysis to explore any differences on the association between ALE index and adolescents’ overweight/obesity by urban and rural areas. Accounting for the potential role of lifestyle and socio-economic characteristics is key for future research, as understanding the underlying pathways of this association is necessary to design effective interventions.
ConclusionFindings can help us develop a better understanding of associations between the built environment and overweight/obesity status to inform evidence-based planning policy and practice strategies on how to modify the built environment to promote child health in future generations by increasing better opportunities for diet and activity.
{"title":"Neighbourhood active living environment and obesity in adolescents using the Millennium Cohort Study","authors":"Theodora Pouliou, Lucy Griffiths, Rowena Bailey, Sinead Brophy, Jo Davies, Ronan Lyons, Rebecca Pedrick-Case, Gareth Stratton, Richard Fry","doi":"10.23889/ijpds.v8i2.2330","DOIUrl":"https://doi.org/10.23889/ijpds.v8i2.2330","url":null,"abstract":"ObjectivesYouth obesity has increased substantially in recent decades; however, the potential role of the built environment in mitigating these trends is unclear. This study examines whether more walkable neighbourhoods are associated with lower levels of overweight/obesity for adolescents compared to less walkable neighbourhoods, after considering the potential role of socio-economic and lifestyle characteristics.
 MethodsWe examine overweight/obesity levels for all singleton 14 years-old children living in Wales, using the UK Millennium Cohort Study. Children are classified as healthy weight, overweight and obese using international age and sex adjusted cut-offs for body mass index (BMI). The built environment is assessed using the active living environments (ALE) index for 2017-2018 classified into 5 categories (1-low walkability and 5 – high walkability). We apply regression analysis and adjust for children characteristics (e.g., physical activity), parental socio-economic circumstances and lifestyle choices (e.g., maternal education, physical activity).
 ResultsWe assess the hypothesis that the built environment is associated with adolescents’ overweight/obesity levels and examine how much of this association could be modified by parental socioeconomic circumstances and lifestyle choices. The ALE index is higher in urban compared to rural areas. To capture variations in Wales’ population, we are conducting a stratified analysis to explore any differences on the association between ALE index and adolescents’ overweight/obesity by urban and rural areas. Accounting for the potential role of lifestyle and socio-economic characteristics is key for future research, as understanding the underlying pathways of this association is necessary to design effective interventions.
 ConclusionFindings can help us develop a better understanding of associations between the built environment and overweight/obesity status to inform evidence-based planning policy and practice strategies on how to modify the built environment to promote child health in future generations by increasing better opportunities for diet and activity.","PeriodicalId":132937,"journal":{"name":"International Journal for Population Data Science","volume":"65 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134913953","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-09-14DOI: 10.23889/ijpds.v8i2.2203
Nicola Firman, Marta Wilk, Milena Marszalek, Lucy Griffiths, Gill Harper, Carol Dezateux
ObjectivesWe used a dynamic method of identifying household members from Electronic Health Records (EHRs) linked to National Child Measurement Programme (NCMP) data to estimate the likelihood of children with obesity sharing a household with an older child with obesity, accounting for individual and household characteristics.
MethodsWe included 126,829 NCMP participants in four London boroughs and assigned households from encrypted Unique Property reference Numbers (UPRNs) at NCMP date for 115,466 (91%). We categorised the ethnic-adjusted body mass index of the youngest and oldest household child (underweight/healthy weight<91st, ≥91st to <98th overweight, obesity≥98th centile) and explored associations of the youngest child’s weight status with: oldest child’s weight status, number of household children (two, three or ≥4), youngest child’s sex, ethnicity and school year of NCMP participation (reception or year 6). We estimated adjusted odds ratios (aOR) and 95% confidence intervals (CI) of obesity in the youngest child.
Results19,702 UPRNs were shared by two or more NCMP participants (youngest children: 51.2% male, 69.5% reception). 10.4% of youngest (95% CI: 10.0,10.9) and 13.0% of oldest (12.5,14.3) children were living with obesity. One third of youngest children with obesity shared a household with another child with obesity (33.2%; 31.2,35.2), compared with 9.2% (8.8,9.7) of those with a healthy weight. Youngest children living with an older child with overweight (aOR: 2.33; 95% CI: 2.06,2.64) or obesity (4.59, 4.10,5.14), those from South Asian ethnic backgrounds (1.89; 1.64,2.19) or taking part in NCMP in year 6 (2.21; 2.00,2.43) were more likely, and girls (0.73; 0.67,0.81), children living with just one other child (0.87; 0.77,0.98) and from Black ethnic backgrounds (0.78; 0.66,0.93) less likely, to be living with obesity.
ConclusionLinked EHRs can provide novel insights into the shared weight status of children sharing the same household. Further qualitative research is needed to understand how household food practices may vary by other household characteristics to improve our understanding of how the home environment influences childhood obesity.
{"title":"Is obesity more likely among children sharing a household with an older child with obesity?","authors":"Nicola Firman, Marta Wilk, Milena Marszalek, Lucy Griffiths, Gill Harper, Carol Dezateux","doi":"10.23889/ijpds.v8i2.2203","DOIUrl":"https://doi.org/10.23889/ijpds.v8i2.2203","url":null,"abstract":"ObjectivesWe used a dynamic method of identifying household members from Electronic Health Records (EHRs) linked to National Child Measurement Programme (NCMP) data to estimate the likelihood of children with obesity sharing a household with an older child with obesity, accounting for individual and household characteristics.
 MethodsWe included 126,829 NCMP participants in four London boroughs and assigned households from encrypted Unique Property reference Numbers (UPRNs) at NCMP date for 115,466 (91%). We categorised the ethnic-adjusted body mass index of the youngest and oldest household child (underweight/healthy weight<91st, ≥91st to <98th overweight, obesity≥98th centile) and explored associations of the youngest child’s weight status with: oldest child’s weight status, number of household children (two, three or ≥4), youngest child’s sex, ethnicity and school year of NCMP participation (reception or year 6). We estimated adjusted odds ratios (aOR) and 95% confidence intervals (CI) of obesity in the youngest child.
 Results19,702 UPRNs were shared by two or more NCMP participants (youngest children: 51.2% male, 69.5% reception). 10.4% of youngest (95% CI: 10.0,10.9) and 13.0% of oldest (12.5,14.3) children were living with obesity. One third of youngest children with obesity shared a household with another child with obesity (33.2%; 31.2,35.2), compared with 9.2% (8.8,9.7) of those with a healthy weight. Youngest children living with an older child with overweight (aOR: 2.33; 95% CI: 2.06,2.64) or obesity (4.59, 4.10,5.14), those from South Asian ethnic backgrounds (1.89; 1.64,2.19) or taking part in NCMP in year 6 (2.21; 2.00,2.43) were more likely, and girls (0.73; 0.67,0.81), children living with just one other child (0.87; 0.77,0.98) and from Black ethnic backgrounds (0.78; 0.66,0.93) less likely, to be living with obesity.
 ConclusionLinked EHRs can provide novel insights into the shared weight status of children sharing the same household. Further qualitative research is needed to understand how household food practices may vary by other household characteristics to improve our understanding of how the home environment influences childhood obesity.","PeriodicalId":132937,"journal":{"name":"International Journal for Population Data Science","volume":"36 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134914025","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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