bluuebunny/crossref_metadata_2025_split huggingface dataset:
The ADRN and the public’s voice: making administrative data available for research while gaining public trust
Authors: Verwulgen Ilse 
Published: April 2017

ABSTRACT
BackgroundThis paper presents the way the Administrative Data Research Network (ADRN) has incorporated the results of public consultation into the core of its operations and policies.
Administrative data are a rich source of information, but underused in social and economic research. In the past it has been very difficult to gain access to these datasets. The ADRN is a UK-wide initiative, funded by the Economic and Social Research Council (ESRC) in 2013. The Network facilitates secure research access to linked, de-identified administrative data to enable real-world analysis that can benefit society. Administrative data research can provide a solid evidence base for policy makers to evaluate the results of active policies or uncover new ways to tackle social problems.
ApproachUsing government data for research is still a sensitive topic for the public, and rightly so. Amidst growing concerns about privacy and data security, the use of administrative data is a potentially controversial move. At the beginning of the project, the ESRC commissioned a nation-wide public consultation to gauge understanding of social research and reactions to the use of administrative data in research.
ResultsThe ADRN used the results of this consultation to incorporate mechanisms for lay participation as well as accountability towards the public into its governance, and makes a case for engaging the public without compromising the scientific integrity of the research it supports.
Funded by the Economic & Social Research Council, the Administrative Data Research Network, set up as part of the UK Government’s Big Data initiative, is a UK-wide partnership between universities, government bodies, national statistics authorities and the wider research community. www.adrn.ac.uk
Effect of incomplete registration at general practices on the annual prevalence of treated asthma
Authors: Al Sallakh Mohammad , Rodgers Sarah , Sheikh Aziz , Lyons Ronan , Davies Gwyneth 
Published: April 2017

ABSTRACTBackgroundAnnual prevalence of 'treated asthma' can be estimated using primary care routine data. However, the denominator may include people with incomplete registration at general practices (GP) in the year of estimation. Patients with incomplete registrations who actually take medications but have no recorded prescriptions represent false-negative cases leading to underestimated prevalence.
ObjectivesTo estimate the effect of incomplete GP registrations on the annual prevalence of treated asthma in Wales.
MethodsUsing the GP dataset of the Secure Anonymised Information Linkage (SAIL) Databank, we created a denominator of people who lived in Wales and registered at Welsh GPs for any period during 2010. For the uncorrected prevalence, the numerator included people who ever had a recorded asthma diagnosis and any current recorded asthma prescriptions. For the corrected prevalence, we estimated the number of false-negatives and added them to the numerator. To do that, we calculated, for asthma patients with incomplete registrations and no recorded prescriptions, the sum of probabilities of having prescriptions if they had complete registrations. We estimated the absolute and relative increases in the prevalence at national and local authority levels as well as for the subpopulation with incomplete registration.
ResultsThe denominator included 2,221,967 people, of whom 94.8% had complete GP registration in 2010. Without correction, the numerator included 132,439 patients giving a prevalence of 5.96% [95% CI 5.93-5.99]. By adding estimated 1,801 false-negative cases to the numerator, the adjusted prevalence is 6.04% [95% CI 6.01-6.07] with absolute and relative increases of 0.08% and 1.36%, respectively. At the local authority level, the relative increase ranged from 0.47% for Blaenau Gwent to 3.94% for Monmouthshire. Among the subpopulation with incomplete registration (5.1%), the prevalence increased by 68.0% from 2.32% to 3.91%.
ConclusionIn Wales, which has a highly stable population, incomplete GP registration has negligible effect on the prevalence of treated asthma at a national level, although it was more significant for sub-regions with less stable populations. This correction method could be useful for more accurate estimation of asthma burden and the prevalence of active disease in highly dynamic populations.
FundingHealth and Care Research Wales and ABMU Health Board. Supported by Asthma UK Centre for Applied Research [AUK-AC-2012-01].
Visibility in health statistics: a population data linkage study more accurately identifying Aboriginal and Torres Strait Islander Births in Victoria, Australia, 1988-2008
Authors: Ritte Rebecca , Freemantle Jane , Mensah Fiona , Sullivan Mary 
Published: April 2017

ABSTRACTObjectivesAn accurate picture of infant mortality informs society of its social progress. It is a key indicator of how effective public health policies and programs are in caring for the most vulnerable in our society. Currently, at the population level, Victorian data on Aboriginal and Torres Strait Islander births and deaths are excluded from Australian vital statistics. The Victorian Aboriginal Mortality Study aimed to provide a more complete and accurate population profile of Aboriginal births in Victoria using population data linkage of Victorian statutory and administrative datasets. ApproachTwo population statutory datasets, the Victorian Perinatal Data Collection (VPDC) and Victorian Registry of Births, Deaths and Marriages (RBDM) were linked, using probabilistic matching with mother’s name and surname, child’s date of birth and sex, for all births that occurred in Victoria between 1988 and 2008, inclusive to more accurately ascertain births to mothers and fathers who identified as Aboriginal and/or Torres Strait Islander (hereafter respectfully ‘Aboriginal’).ResultsOver 1.34 million files, reporting births between 1988 and 2008, were linked. However, due to data integrity issues for Indigenous identification prior to 1998, the years between 1999 and 2008 only were used in the development of the birth cohort. Matching the VPDC with the RBDM resulted in identifying an additional 4,333 live births where mother and/or father identified as Aboriginal, representing an 87% increase in the number of births previously recorded as Aboriginal by the VPDC*. The largest increase (186%) in the number of births where mother and/or father identified as Aboriginal births was observed within the Victorian metropolitan areas. ConclusionThis is the first time that the VPDC and RBDM birth data were linked in Victoria. The matched birth information established a more complete population profile of Aboriginal and/or Torres Strait Islander births. These data will provide a more accurate baseline to enhance the Victorian and Australian governments’ ability to plan services, allocate resources and evaluate funded activities aimed at eliminating disparity experienced by Aboriginal and/or Torres Strait Islander peoples. Importantly, it has established a more accurate denominator from which to calculate Aboriginal infant mortality rates for Victoria, Australia.
*Until 2009, the mother’s Indigenous identification only was recorded in the VPDC
Parental social position, in utero growth and risk of child development disorders: an administrative data based prospective cohort study
Authors: Playford Chris , Dibben Chris , Williamson Lee , Huang Zengyi 
Published: April 2017

ABSTRACTObjectivesTo evaluate the influences of low birthweight and socioeconomic status upon child development disorders
ApproachIt has been recognised that low birthweight and socio-economic status impact cognitive development in children. Previous studies in Scotland investigated this relationship using the Scottish Mental Health Survey 1932, the Growing Up in Scotland (GUS) longitudinal survey, and the Aberdeen Children of the 1950s study. This paper examines this using the Scottish Longitudinal Study (SLS) linked with Maternity Inpatient and Day Case records and Child Health Systems Programme Pre-School (CHSP Pre-School) records. This is original because it extends previous work through large-scale contemporary data which has been routinely collected and is representative of the Scottish population. It also includes a novel design through the use of birth data from parents and children recorded within the SLS.
ResultsFrom this research it was identified that these child development measures were strongly associated with gestational-age specific birthweight and that fine motor, social and hearing abnormalities were much more likely for children with parents in lower grade occupations or who were long-term unemployed. These associations were net of other indicators of family socioeconomic position and birth outcomes, suggesting that infants from disadvantaged backgrounds remained more likely to experience these conditions beyond the differences that could be explained by other relevant factors (such as their birthweight).
ConclusionThese findings confirm and build upon previous analysis through the use of linked administrative data.
The effect of in utero exposure to alcohol, tobacco and cannabis on educational attainment in adolescence: findings from ALSPAC, a UK cohort study
Authors: Teyhan Alison , Evans Dave , Macleod John 
Published: April 2017

ABSTRACT
ObjectivesAlcohol, tobacco and cannabis can cross the placenta, and could have long-lasting effects on the brain of the developing foetus. We examine whether exposure to these substances is associated with educational attainment in adolescence (Key Stage 4 [KS4], aged 16yrs), and consider whether any associations are due to an intrauterine causal mechanism.
ApproachWe use two main approaches: (1) a comparison of the risks associated with maternal substance use during pregnancy with the risks associated with paternal substance use at the same time, and (2) Mendelian Randomisation (MR). The population-based sample are from the Avon Longitudinal Study of Parents and Children. Educational attainment at KS4 was determined through linkage to the National Pupil Database: capped score of eight best subjects (converted to percentage). Mothers and their partners reported use of substances during the mother’s pregnancy via questionnaire. In observational complete-case analysis (n=6018), multilevel (child level 1, school level 2) linear models were used to examine the association between maternal and paternal substance use and KS4 attainment adjusted for potential confounders. In MR analysis, genetic markers associated with maternal alcohol (rs1229984) and tobacco (rs1051730) use were used to estimate the unconfounded effect of the exposures.
ResultsMaternal substance use in pregnancy was common (72% reported any alcohol, 22% any tobacco, and 2% any cannabis) and socially patterned (tobacco associated with deprivation, moderate alcohol and light cannabis with higher maternal education). In adjusted observational analyses, children of mothers who smoked had lower KS4 percentage scores (β -2.7, 95% CI -3.7 to -1.7) but a similar association was observed for paternal smoking (β -3.0, -3.8 to -2.2). Compared to children of non-drinkers in first trimester, children whose mothers drank ≥7 units per week had lower KS4 scores (β -4.6, -7.9 to -1.4), but children of lighter drinkers did not. The MR analyses were under-powered but provisional results suggest no association between maternal smoking and KS4 score, but that small amounts of alcohol could have a detrimental effect. Neither maternal nor paternal cannabis use was associated with educational attainment in observational analyses, but few mothers in our sample used cannabis regularly in pregnancy.
ConclusionsThe negative association in observational analysis between maternal smoking in pregnancy and child KS4 attainment is likely due to residual confounding rather than an intrauterine mechanism. Conversely, residual confounding may be masking a negative association between lower levels of alcohol drinking and KS4 attainment in observational analysis.
Qualitative content analysis for international comparison of data usage agreements
Authors: Haux Christian , Gabel Frank , Trescher Anna-Lena , Whelton Helen , Van der Heijden Geert , Listl Stefan , Knaup-Gregori Petra 
Published: April 2017

ABSTRACT
ObjectivesThe multi-country-EU project ADVOCATE (Added Value for Oral Care) involves the analysis of routinely collected oral health care records from health insurance systems in six European countries, including NHS England and NHS Scotland. The data will be stored in a in a central repository using AnalytiXagility which adheres to strict privacy and security standards. Therefore, data usage agreements must be consented with all partners and being subjected to specific regulations in the respective nation. This will result in different aggregation levels for data integration, e. g. one of the partners does not allow the transfer of data that contain a personal identifier. To understand the variety of requirements and limitations in different countries, we performed a qualitative content analysis of the agreements.
ApproachA categorisation system for privacy and data protection aspects was developed. The aspects are based on privacy conditions mentioned in guidance documents, the agreements themselves and the project’s proposal. The agreements were examined for textual elements and systematically coded by three reviewers. Compliance between privacy conditions and the agreements was estimated using a nominal scale, whether the context was available in the agreement or not. The software MAXQDA was used for tagging relevant text passages.
ResultsThe initial coding scheme contains eight categories on top-level. They include, inter alia, aspects on data access, -preparation, -transmission, and -usage. The top-levels divide in up to four different levels of detail. The coding system was continuously adapted during full-text analysis. Initially, the agreements from the partners of Denmark and Germany were used. Characteristics in the agreements require a fine granularity of sub-categories. The German agreement, for example, names the whole institution as partner, whereas the Danish agreement differentiates in personal roles, each with own responsibilities.
ConclusionUndertaking an overview of privacy conditions can be a valuable step in comparing privacy and security requirements in different national regulations. The qualitative content analysis was found a suitable approach for this purpose because it enables the detection of fine characteristics. By using an incremental design, it is possible to adapt the coding system to include additional partners. However, the current coding system has the limitation that heterogeneity between the agreements leads to a fine granularity of categories that hamper the comparability between partners. Despite these problems, the approach allows the comparison of data privacy and supports the development of a data integration process for international harmonisation.
Preserving Privacy in the Face of Clients with Different Data Needs Using the NGLMS
Authors: Radbone Chris , Farrow James 
Published: April 2017

ABSTRACT
ObjectivesSA NT DataLink’s Next Generation Linkage Management System (NGLMS) provides a novel approach to handling privileged or sensitive data for certain projects without having to replicate or duplicate databases and work to protect privacy. The NGLMS is a collection of records (nodes) and relationship (edges) that forms a graph (in the computer science sense) and is designed to support a mix-and-match and layered approach to data linkage projects. The NGLMS allows for the needs of different clients to be managed from the one graph data set while preserving privacy and honouring the requirement to protect sensitive information without having to relink or duplicate data.
ApproachThe NGLMS uses a layer-based approach to project description and design. Projects, a specific data linkage request for example, are composed of various data layers. The data layers consist of data sets, link information in the form of pairwise relationships. These layers are coupled with quality information, e.g. acceptable similarity thresholds and/or the types of relationships to consider as ‘linking’ two records, to construct an effective virtual data set which may be different for each project. A project can be constructed by composing existing linkage data (where it already exists) without having to perform new linkage comparisons.
ResultsA case study will be discussed where a data set containing extremely sensitive information (record pairings revealing name changes due to family court proceeding and protection orders) was received for incorporation into the data pool. This information is sensitive for which the particular data custodian who supplied the information would wish to have honoured by only incorporating their records for approved analysis, and otherwise excluded for other non-authorised analysis. By placing these data into a separate layer to be included in some projects and not others the sensitive nature of the data can be accommodated and its effects ‘turned on and off’ at will.
ConclusionThe flexible on-demand nature of data extraction and late clustering in the NGLMS Graph based approach the linkage allows for ad-hoc project construction and the dynamic inclusion and exclusion of data without the overhead of relinking data.
The Impact of Asthma on congenital anomalies, prematurity, birth centiles and infant feeding: retrospective population cohort analysis 2004-2010
Authors: Davies Gareth , Jordan Susan , Thayer Daniel , Tucker David , Dolk Helen 
Published: April 2017

ABSTRACT
Objectives9.4% of pregnant women in Wales are prescribed medicines for asthma. Prescription of asthma medicines in early pregnancy is associated with increased prevalence of congenital anomalies (aOR 1.20, 1.08 - 1.34). The literature offers less consensus on more common adverse outcomes: premature delivery (<37 weeks), small for gestational age (<10th growth centile) (SGA), and failure to breastfeed.
ApproachRoutinely collected data from the all-Wales health and social care linked electronic databank (the Secure Anonymised Information Linkage [SAIL]) were interrogated. Data from the Office of National Statistics birth and deaths registry, the National Community Child Health Database (NCCHD), the Patient Episode Database for Wales, primary care prescription records and the Congenital Anomaly Register (CARIS) 2000-2010 were linked. Growth centiles were calculated from WHO standards. Prescriptions were classified using ATC categories and BTS guidelines. We included live born singletons without congenital anomalies. We excluded infants exposed to medicines known to carry higher risks than asthma medicines: insulin, AEDs, coumarins. Odds ratios, with 95% CIs, were calculated for use of asthma medicines 1 year either side of pregnancy.
Results357,989 pregnancies were identified in NCCHD 2000-2010. Data were available on 117,717 at delivery and 38,665 on breastfeeding at birth and 6-8 weeks 2004-2010. Data loss was due to suboptimal GP participation.Delivery before 37 weeks’ gestation and SGA were more common in those prescribed: any short acting beta2 agonists (SABA) (OR 1.12[CI 1.04-1.20], 1.15[1.08-1.28]); inhaled corticosteroids (ICS) (1.07[0.97-1.19], 1.18[1.09-1.29]); systemic corticosteroids (1.34[1.13-1.60], 1.23[1.06-1.43]).
At birth and 6-8 weeks, breastfeeding was less prevalent amongst those prescribed: SABAs (OR 0.90[CI 0.86-0.95], 0.87[0.82-0.93]); ICS (0.88[0.82-0.95], 0.85[0.78-0.93]); systemic corticosteroids (0.86 [0.76-0.98], 0.80[CI 0.69-0.94]).
ConclusionPrescription of asthma medicines is associated with higher prevalence of conditions predisposing to childhood ill-health. While routinely collected data is unable to account for confounding by indication, and the impact of asthma cannot be disentangled from that of its treatment, these findings indicate that prescription of asthma medicines offer a useful marker to target additional support throughout pregnancy and lactation.
FundingThis paper was developed from the EUROmediCAT project.
Investigating antimicrobial prescribing pattern before the development of CDI using data linkage
Authors: Pan Jiafeng , Kavanagh Kim , Marwick Charis , Wuiff Camilla , Davey Peter , Bryson Scott , Robertson Chris , Bennie Marion 
Published: April 2017

ABSTRACTObjectivesPrior use of antimicrobials, in particular broad-spectrum antimicrobials, is associated with the development of Clostridium difficile infection (CDI). Our previous work has demonstrated increased risk with cumulative exposure but there is limited evidence on specific patterns of cumulative antimicrobial prescribing prior to infection. Understanding this pattern will help inform antimicrobial stewardship. This study aims to investigate the prescribing patterns for CDI cases with more than 4 weeks cumulative antimicrobial exposure during the 6 months prior to their CDI date.ApproachWe linked three Scottish patient-level data sets: laboratory confirmed CDI (ECOSS), prescriptions for antimicrobials in primary care (PIS) and all hospital admissions (SMR01). From ECOSS all cases of CDI reported in the period August 2010 to July 2013 were identified. Each CDI case was linked to SMR01 to allocate case type (either hospital or community associated) and to PIS for previous antimicrobial prescriptions. Visual representation of temporal exposure indicating both duration and drug type of each antimicrobial dispensed during the 6 month period before the infection was produced to clearly understand the pattern of prescribing.ResultsIn the study period, there were a total of 1557 community acquired CDI cases without recent (prior 3 months) hospitalisation. Among them, 287 (18%) cases had more than 4 weeks prior cumulative antimicrobial exposure accumulating a total of 1311 dispensed prescriptions. Cases had an average 4 (Q1:3,Q3:6) prescriptions and 2 (Q1:2,Q3:3) different types of antimicrobials dispensed. The timeline plot shows that repeated short duration prescriptions contributed more to cumulative exposure than long duration prophylaxis. The most common antimicrobials prescribed were amoxicillin (38% of cases), trimethoprim (30%) and flucloxacillin (27%). The median duration per prescription for each of these was less than 2 weeks. The antimicrobials that had a median duration of around a month per prescription were oxytetracycline (3%) and clindamycin (6%).
ConclusionsThis study of a national linked patient level data set contained sufficient numbers of cases to enable investigation of the prescribing pattern in individuals with highest risk cumulative exposure. This study uses NHS Scotland’s developing Infection Intelligence Platform which will place Scotland as a world leader in the use of health informatics to support infection control and antimicrobial stewardship.