bluuebunny/crossref_metadata_2025_split huggingface dataset:
Increased mortality among mothers involved in family court care proceedings compared with their peers in England
Authors: Ireland Georgina , Wijlaars Linda , Jay Matthew , Gilbert Ruth 
Published: September 2024

ObjectiveResearch has called for Family Courts (FC) and social care services involved in removing children from parental care to consider and address the health of the mother.
ApproachWe linked England FC and healthcare data to compare the 10-year mortality risk and cause of death after a first live birth (FLB) for mothers who were involved or not in FC proceedings in England.
Results3,072,946 mothers (15-39 years) with a FLB between 2007 and 2019 were followed for up to 10 years (median:8.7 years, IQR: 5.4-10), during which 33,759 were involved in FC. Ten-year cumulative mortality was higher among the FC mothers (1.7 vs 0.3%) and the age-adjusted mortality rate ratio was 7.8 (95%CI: 7.00-8.6).
The majority of maternal deaths in both groups met criteria for avoidable death (FC 82.9% vs no-FC 66.8%). Injury was the leading cause of death (204/420; 48.5%) in mothers involved in FCs and cancer (2,823/6,208; 45.5%) in mothers in the no-FC group. Compared with no-FC mothers, more deaths were related to drug use (35.0% vs 6.0%), suicide (14.5% vs 8.4%) or alcohol (9.8% vs 3.5%).
Among mothers involved in FCs, maternal mortality was higher in cases when children were placed into out-of-home care (1.65%, 463/28143), than when placed at home (0.94%, 53/5563) at first FC proceeding.
Conclusions and ImplicationsAddressing high rates of avoidable mortality among mothers involved in FCs is important for children and parents and could be monitored using routinely linked healthcare, social care and family court data.
Identifying disease phenotypes from linked health data: Comparison of self-report, hospital inpatient and primary care in UK Biobank.
Authors: Conroy Megan , Lacey Ben , Reeves Gillian , Allen Naomi 
Published: September 2024

ObjectivesAdministrative health data is commonly used for epidemiological research, however it is not well understood how disease phenotypes replicate across different data sources.
ApproachUK Biobank is a prospective cohort study of 500,000 adults, with ascertainment of health outcomes using administrative health data. Prevalence at recruitment for 33 diseases were calculated in each health data source: self-report, primary-care, and hospital episode statistics (HES). Consistency of disease identification between sources, and median days between first diagnosis across data sources was determined. Linear regression was used to investigate determinant of differences in the average time between first diagnosis in primary-care and HES data.
ResultsHypertension was the most commonly identified disease in both self-report and HES (26.5% and 12.1% respectively), and anxiety in primary-care (12.7%). Diseases could be grouped into: 1) those identified largely by self-report alone (e.g. migraine, constipation), with inconsistency in the date first diagnosed; 2) those identified largely by primary care alone (e.g. anxiety, depression), also with inconsistency in the date first diagnosed; and 3) those that appeared mostly in all three sources, with highly consistent date of first report (many were emergency hospital admissions [e.g. stroke]). A number of variables were associated with time between primary-care and HES diagnosis. For example, heavier smokers had a significantly shorter period between first primary-care and first HES record for asthma, diabetes and hypertension.
Conclusions and ImplicationsThese results indicate that there are inherent biases in diseases ascertained from linked health data that must be taken into account for epidemiological studies.
Pushing health data access boundaries - adapting NHS governance for 3 challenges: clinical free-text, safe commercial access and AI development
Authors: Tilbrook Amy 
Published: September 2024

This presentation will demonstrate expansions to TRE governance frameworks developed to facilitate safe data access in three advanced areas: commercial access, clinical free-text, and innovation with AI/Machine Learning.
NHS research governance frameworks - originally set up for clinical trials and expanded into the TRE and secondary data use space – are not an immediate fit for advanced techniques in data science research. Over 2 years, public, expert and user engagement approaches were utilised to support developing frameworks within DataLoch, a Health and Social Care TRE and data access service in South-East Scotland.
Surveys, workshops and continuous user and data controller feedback allowed the testing of tools and assessments to adapt traditional NHS governance structures. These frameworks utilise the Five Safes framework to make NHS data controllers supportive of innovative research in the public and health service’s benefit.
The presentation will summarise the challenges faced for one TRE and researchers working to support these areas, and the frameworks that are now are being tested within an NHS Scotland Health Board. The development and implementation demonstrates that governance structures can be adapted collaboratively and paves the way for more flexible TRE governance to allow the use of NHS patient data to remain legally and ethically robust while supporting advanced techniques of analysis.
Automating thresholds in probabilistic linkage
Authors: White Zoe , Plachta Josie , Shipsey Rachel 
Published: September 2024

ObjectiveThe Office for National Statistics aim is to create a platform containing a variety of datasets interlinked via data spines. The resource burden linking this many datasets is high, and so research to maximise automation is a key aim of the platform’s methodology. Probabilistic linkage is a standard linkage technique that utilises clerical resolution – a very costly process – to find acceptance threshold parameters. Here, we present research into automating threshold assignment.
Every admin dataset is different, causing the probabilistically matched pairs scores to change, a set threshold cannot be used. Instead, a data-informed threshold must be set.
ApproachA gold standard linked dataset was linked through Fellegi-Sunter, stopping at the point of finding the probabilistic threshold. To find the threshold, graphs plotting the number of records at each rounded score were created and reviewed, specifically looking at the spread of gold standard links, deterministic links, unique and non-unique probabilistic links.
This review suggested a method of threshold assignment that provides multiple quality levels: a high-precision threshold, and a high-recall threshold. This presentation will showcase these graphs and explain how the two thresholds are calculated.
The 2021 Census is one dataset linked within the gold standard linked dataset. The 2021 Census has high quality and relatively clean data, but is likely not representative of administrative data needed in the data platform. Therefore, next steps are testing this method on other datasets with a variety of quality, characteristics, and types.
The benefits of active management of coronary heart disease (CHD) in Wales: how the use of routine collected administrative data can drive efficiency and encourage best practice in condition management.
Authors: Smith Kendal , Evans Lloyd , Davies Gareth , Akbari Ashley , Bailey Rowena , Palmer Richard , Goodfellow Jonathan , Thomas Michael , Lutchman-Singh Kerryn 
Published: September 2024

Objective and ApproachWe analysed the effect on subsequent costs of the setting of the first contact for patients with coronary heart disease in Wales. By categorising health events as proactive or reactive, from the event data source (proactive = primary care (general practice) interactions, elective hospital bed days and outpatient attendances. Reactive = accident and emergency (A&E) attendances and emergency hospital bed days). A standard cost was applied to obtain an annualised cost for each patient. The unit cost for each source was GP £36, bed days £398, outpatient £143, A&E £188.
ResultsWe found 42,563 people having CHD events during 2015-2019. Of these, 18,390 had a proactive event as their first event, 23,840 had a reactive event first. The ratio of proactive to reactive events was 1: 3.7 (ratio of costs were £1: £6.30). When the first event was proactive the ratio of events was 1: 0.85 (costs were £1: £1.33). When the first event was reactive the ratio was 1: 4.4 (costs were £1: £33.00).
Conclusion and ImplicationsThe setting of the first contact appears to be key, with costs reducing by a factor of 14 if the first contact was carried out in a planned environment. Can investment in more active management of a condition reduce overall costs?
The work has highlighted the power of using anonymised population-scale linked individual-level data and indicates the health resource reductions possible from improved managed care of patients.
Characterizing school-linked and non-school linked SARS-CoV-2 cases in children and households: a retrospective cohort study using linked population-level administrative data from Manitoba, Canada
Authors: Hnatiuk Jill , Sirski Monica , Mishra Sharmistha , Baral Stefan , Gordon-Pappas Diane , Katz Alan 
Published: September 2024

ObjectiveTo identify directionality of SARS-CoV-2 cases within households and schools, and characterize school, household, and neighbourhood factors associated with school and non-school linked cases.
ApproachUsing linked administrative data housed at the Manitoba Centre for Health Policy, a cohort of 449,425 individuals from 126,670 households with school-aged children enrolled in Manitoba public schools between September 1, 2020-June 30, 2021 was created. Using population-based SARS-CoV-2 laboratory test results, education enrolment and household composition data, index and transmission cases were counted and categorized at an individual and household level as school or non-school linked. Logistic regression models examined school, household and neighbourhood factors associated with school- and non-school linked households.
Results143280 individuals were tested for SARS-CoV-2 during the study period; 14712 individuals (10.3%) tested positive. Amongst positive cases, 1695 (11.5%) were school-linked; the remaining 13017 (88.5%) were non-school linked. 13.7% of SARS-CoV-2 positive households had ≥1 case linked to school; 86.3% did not. Preliminary results found higher incomes quintiles had lower odds of being a school-linked household, as did living outside the Winnipeg region. Having more children in a grade and more household members resulted in higher odds of being a school-linked transmission household. No associations were observed for having a child under age five in the household.
ConclusionsTaken together, these data suggest schools were not a large source of SARS-CoV-2 cases in Manitoba and factors associated with school-linked households largely mirrored broader community transmission patterns.
ImplicationsThese findings may influence public health approaches to future pandemic control.
Improving surveillance of emergency department activity through natural language processing
Authors: Strafford Huw , Fonferko-Shadrach Beata , Pickrell W. Owen , Lyons Jane , Lacey Arron , Evans Jordan , John Gareth , Selby Jennifer , Lyons Ronan 
Published: September 2024

Objective and ApproachManagers, clinicians and policymakers have limited information on near-real time patterns of attendance at emergency departments (ED). Our aim was to develop a surveillance system through extracting information from the presenting complaint to develop and feed activity dashboards, improve injury surveillance and support research.
We developed a Natural Language Processing (NLP) pipeline using the General Architecture for Text Engineering (GATE) system. The pipeline produced Unified Medical Language System (UMLS) codes from ED presenting complaint records and also implemented the Joint Action on Monitoring Injuries in Europe (JAMIE) Minimum Dataset. We classified complaints into 31 common problem presentations (Coughs, Bleeds, Mental Health, Dizziness...), along with categories from JAMIE (Mechanism of Injury, Location, Activity, Intent…).
ResultsPreliminary results are from a pilot study of 86,416 presenting complaints from Morriston Hospital in 2014.
The most common terms used for grouped symptoms/categories were “Injury” (38.6%, n=28691), “Pain” (22.8%, n=19420), “Unwell” (7.2%, n=6117), “Bleeding” (6.7%, n=5760), and “Shortness of Breath” (3.8%, n=3255).
32.3% of records contained Mechanism of Injury codes, including, falls (15.2%, n=13174), struck by/against (6.9%, n=5960), cuts (5.6%, n=4833), road traffic collisions (2.5%, n=2124) and poisoning (1%, n=900). We are continuing to refine and validate the categories using precision and recall and with comparison with coded diagnoses.
Conclusions and Implications NLP can be used to extract valuable additional detailed information from ED data. We will further develop the algorithms for all hospitals in Wales for data from 2023 and design dashboards to produce a near-real time surveillance system.
The scale and timing of child protection system contacts from 0-18 years: a study of 1.9 million Australian children
Authors: Pilkington Rhiannon , Falster Kathleen , Hanly Mark , Montgomerie Alicia , Ahmed Tasnia , Newton BJ , Edwards Ben , Lingam Raghu , Shakeshaft Anthony , Cretikos Michelle , Stewart Jessica , Hawkins Katherine , McLean Kitty , Lynch John 
Published: September 2024

IntroductionTo prevent abuse, neglect and poor outcomes for children and families, including child protection intervention, maltreatment, and removals, it is critical to understand the scale and timing of child protection system contacts to identify opportunities for early prevention.
Objectives and ApproachWe quantified the cumulative incidence of child protection contacts during childhood, including initial reports, screened-in reports, investigations, substantiations and removal into out-of-home-care, among all children in two Australian states. We used child protection system data linked for the South Australian (SA) BEBOLD and NSW Child E-Cohort data platforms as the numerator, and census data for the denominator, for 571,497 SA children (birth-years 1991-2019) and 1,362,505 NSW children (birth-years 2005-2018).
ResultsOf children born in 2005 (NSW SA): Two in five children were reported to child protection by age 14; one in ten children were the subject of a child protection investigation in NSW and SA; one in twelve children in NSW and one in 17 in SA, were substantiated at least once; and one in 35 children in NSW and one in 40 in SA were removed into out-of-home care at least once by age 14. Approximately half of all types of child protection contact first occurred by the child’s fourth birthday.
Conclusions/implicationsThe scale of lifecourse child protection contact underscores the opportunities for early health and social supports to prevent child maltreatment and escalating child protection intervention. Child protection reports also represent an asset to generate public health intelligence to inform early prevention.
Evaluating the effectiveness of the HPV vaccination programme in England, using regression discontinuity design
Authors: Ward Isobel , Bermingham Charlotte , Soldan Kate , Nafilyan Vahe 
Published: September 2024

Objective and ApproachIn England, the National human papillomavirus (HPV) HPV Immunisation Programme was introduced for young girls in 2008. Whilst clinical trials have shown high vaccine effectiveness, real-world evidence is still accruing. Estimating vaccine effectiveness based on real-world data without randomised control trials is challenging, but critical for policy makers. Using Census 2011 data and a population level linked dataset, we exploit a regression discontinuity design (RDD) to assess the impact of the catch-up vaccination programme on cervical dysplasia and cancer diagnoses as recorded in hospital and mortality data in girls born between 1987 and 1992.
ResultsWe estimate that vaccination reduces the incidence of cervical dysplasia diagnoses by 27% and cervical cancer diagnoses by 75% respectively. Girls were followed for a 7-year period between ages 23 and 30 years in girls who were offered vaccination at ages 17 to 18 years as part of the catch-up cohort compared to those who were not eligible for HPV vaccination.
Conclusions and ImplicationsOur work demonstrates how pivotal the HPV vaccination programme has been for reducing adverse cervical outcomes in young women. Additionally, it shows that the estimates of the effectiveness of HPV vaccination obtained using a RDD are comparable to those based on more classic observational studies. This work shows real world vaccination effectiveness and demonstrates how pivotal the national HPV campaign has been in young girls.
Using linked administrative data to describe a cohort of young people who have a parent with a history of homelessness (Study 1)
Authors: Distasio Jino , Hinds Aynslie , Isaak Corinne , Cidro Jaime , Nickel Nathan , Zell Sarah , Sareen Jitender 
Published: September 2024

ObjectiveLittle is known about the children of parents who experience homelessness. The At Home/Chez Soi (AHCS) Research Demonstration Project, launched in 2009, was a Canadian multi-site, multi-year study that tested the effectiveness of Housing First. In Winnipeg, 513 people were enrolled, of whom 47% were parents. Our objective was to determine how the children were faring with respect to their health and social situations at a time their parent was experiencing homelessness.
ApproachThe cohort, created using the Manitoba Centre for Health Policy’s familial linkage methodology, consisted of 405 individuals (< 30 years old) who were the offspring of the Winnipeg AHCS cohort. We descriptively summarized the socioeconomic characteristics and indicators of their involvement (or lack thereof) in various government systems at or in a period up to their parent’s study enrolment date.
ResultsApproximately half of the cohort were female (51%) and under 13 years (52%). Most (76%) resided in a household that had received income assistance. At least 50% had been placed into care at or near birth and only 17% had not been involved with the child welfare system. Of those school aged, 81% were enrolled in school and of those older than school aged, 53% had graduated. Nearly half (49%) had been diagnosed with a mental health disorder and/or with asthma (47%).
Conclusions and ImplicationsThis study is the first in a series seeking to identify ways to prevent multigenerational experiences of homelessness. Findings will generate valuable insights for upstream intervention across various systems.
Family-homelessness and child absence from school: How data linkage research has identified and quantified the association in Wales, UK
Authors: Thomas Ian 
Published: September 2024

BackgroundHome and school experiences are linked. Though evidence exists quantifying the association between family-homelessness and school absences, it largely originates from the United States. Understanding the nature of this association in Wales, UK, is important given differing social, economic, and homelessness policy contexts when compared to the United States.
ApproachAnalysis included pupils attending state funded schools in a single local authority in Wales, during the academic years 2012/13 to 2015/16. Pupils were flagged as experiencing family-homelessness in an academic year if their family were supported by the housing service operating in the local authority area. Outcomes of interest were number of total, authorised, and unauthorised half-day-sessions absent per academic year. Pupils were observed over multiple academic years (N = 105,355 pupil-years), enabling both cross-sectional and longitudinal (panel) analyses.
ResultsOn average, pupils in families accessing the housing service missed a total of 10 half-day-sessions more per academic year than pupils whose families were not accessing the service. Unauthorised half-day-sessions absent were double for pupils in families who had approached the housing service. After controlling for personal and area characteristics, rates of all absences were higher among pupils whose families accessed the service.
ConclusionThis study represents the first published linkage of homelessness and education data in the UK. Given the apparent association between absenteeism and accessing housing support, changes to policy, practice, and law should be explored to facilitate co-operation between schools and housing services in Wales, and to protect children and their families from further disadvantage.
Validation of the Passive Surveillance Stroke Severity score in three Canadian provinces
Authors: Park Alison L. , Peterson Sandra , Zhao Yinshan , Austin Peter C. , Fang Jiming , Hill Michael D. , Kamal Noreen , Field Thalia S. , Joundi Raed A. , Kapral Moira K. , Yu Amy Y. X. 
Published: September 2024

ObjectiveAdjusting for stroke severity is critical in stroke outcomes research. The Passive Surveillance Stroke SeVerity (PaSSV) score is an administrative data-based measure of stroke severity, initially derived in Ontario, Canada using data between 2002-2013. We assessed its geographical and temporal external validity in British Columbia (BC), Nova Scotia (NS), and Ontario, Canada.
MethodsIn each province, we identified adult in-patients with ischemic stroke or intracerebral hemorrhage and admitted from an emergency department between 2014-2019 and calculated their PaSSV score using linked administrative data. We used Cox proportional hazards models to evaluate the association between the PaSSV score and the hazard of death over 30 days and the cause-specific hazard of admission to long-term care over 365 days. We assessed the models’ discriminative values using Uno’s c-statistic, comparing models with versus without PaSSV.
ResultsWe included 86,142 patients (n=18,387 in BC, n=65,082 in Ontario, n=2,673 in NS). The mean and median PaSSV were similar across provinces. Higher PaSSV score, reflecting lower stroke severity, was associated with a lower mortality (hazard ratio and 95% confidence intervals 0.70 [0.68-0.71] in BC, 0.69 [0.68-0.69] in Ontario, 0.72 [0.68-0.75] in NS) and long-term care admission (0.77 [0.76-0.79] in BC, 0.84 [0.83-0.85] in Ontario, 0.86 [0.79-0.93] in NS). Including PaSSV in the multivariable models improved model fit according to the c-statistics.
ConclusionWe showed that PaSSV has geographical and temporal validity. It is a useful tool for risk-adjustment in multi-jurisdiction stroke outcomes research, and a valuable addition to be included in the national algorithm inventory.