bluuebunny/crossref_metadata_2025_split huggingface dataset:
Prenatal maternal infections and early childhood development outcomes: An analysis of Scottish linked administrative health data
Authors: Hardie Iain , Murray Aja , King Josiah , Lombardo Michael , Wilson Philip , Marryat Louise , Thompson Lucy , Minnis Helen , Auyeung Bonnie 
Published: September 2023

ObjectivesPrevious research suggests that prenatal maternal infections may be linked to later childhood neurodevelopmental outcomes and socioemotional difficulties. We exploited a large linked administrative health dataset to examine relationships between prenatal infections and early childhood development outcomes in Greater Glasgow & Clyde (GGC), Scotland.
MethodsWe used population data from birth records, hospital records, prescriptions and routine child health reviews for 55,856 children born in GGC, 2011-2015, and their mothers. Logistic regression models were used to examine the relationship between prenatal infections, measured as both hospital-diagnosed prenatal infections and receipt of infection-related prescription(s) during pregnancy, and having adverse childhood development outcomes identified by health visitors during 6-8 weeks/27-30 months routine child health reviews. Secondary analysis examined whether results varied by (a) specific development outcome types (i.e. gross-motor-skills, hearing-communication, vision-social-awareness, personal-social, emotional-behavioural-attention, and speech-language-communication development), and (b) the trimester(s) in which infections occurred.
ResultsAfter adjusting for confounders/covariates, hospital-diagnosed infections were associated with increased odds of having at least one adverse development outcome identified during child health reviews (OR: 1.30; 95% CI: 1.19-1.42). This relationship was consistent across almost all development outcome types, and appeared to be specifically linked to infections occurring in trimesters 2 (OR: 1.34; 95% CI: 1.07-1.67) and 3 (OR: 1.33; 95% CI: 1.21-1.47), i.e. the trimesters in which fetal brain myelination occurs. Infection-related prescriptions were not associated with a significant increase in odds of having at least one adverse development outcome after adjusting for confounders/covariates (OR: 1.03; 95% CI: 0.98-1.08), but were associated with slightly increased odds of adverse outcomes specifically related to personal-social (OR: 1.12; 95% CI: 1.03-1.22) and emotional-behavioural-attention (OR: 1.15; 95% CI: 1.08-1.22) development.
ConclusionPrenatal infections, particularly those which are hospital-diagnosed and therefore likely to be more severe, are associated with early childhood development outcomes. Our study highlights the usefulness of Scotland’s administrative health data in measuring childhood development. Future research will examine the impact of COVID-19 prenatal infections and lockdown measures.
Mental health, welfare and state support: Findings from a novel data linkage
Authors: Stevelink Sharon , Hotopf Matthew , Madan Ira , Phillips Ava , Leal Ray , Fear Nicola T 
Published: September 2023

ObjectivesTo describe the process and outcomes of establishing a unique data linkage between mental healthcare records from the South London and Maudsley (SLaM) NHS Foundation Trust with benefits records from the Department for Work and Pensions.
Methods448,404 IDs of patients who accessed secondary mental healthcare services at SLaM were sent to the DWP, including personal identifiers. Data from SLaM covered years 2007-2019, whereas data from DWP covered years 2005-2020. A deterministic data linkage approach was used.
ResultsA linkage rate of 93% was achieved. Patient groups who were less likely to be linked were women, those from a racial and ethnic minority background and younger patients. Benefit receipt was high among patients, with 83% of patients having received benefits during the 15-year follow-up period. Benefits most frequently received included unemployment related or income replacing disability benefits.
ConclusionThis data linkage is the first of its kind in the UK to demonstrate the use of routinely collected mental health and benefits data. It provides opportunities to generate much needed high-quality evidence that can be used to achieve change, investment in services and translation into policy and practice.
Universal credit receipt among users of secondary mental health services: Findings from a novel data linkage
Authors: Stevelink Sharon , Hotopf Matthew , Madan Ira , Phillips Ava , Leal Ray , Fear Nicola T 
Published: September 2023

ObjectivesPeople with mental disorders are likely to be overrepresented among Universal Credit (UC) recipients. Despite this, individual level data is lacking on mental disorder diagnosis by UC status, and the intersectionality of different socio-demographic characteristics. Associations were explored between UC receipt, socio-demographic and diagnostic characteristics among mental health service users.
MethodsA novel data source consisting of linked electronic mental healthcare records and Department for Work and Pensions administrative benefits records of patients accessing a large mental healthcare service provider in South London was used. Benefits records were restricted to those that covered years 2013-2019. Only working-age patients were included (n=120,000).
ResultsPreliminary results indicated that of the 120,000 working-age patients with linked data, 38,000 had received UC at some point between 2013-2019. Most UC recipients were allocated to a conditionality regime that required them to look for work, followed by those who did not have to meet any work-related requirements. Adjusted analyses indicated that UC recipients were more likely to be male, younger, lived in more deprived areas, and were from a non-White ethnic background. Interestingly, having a recorded psychiatric diagnosis meant that patients were less likely to have received UC.
ConclusionPossible explanations for the findings will be discussed. In the longer term, our findings have the potential to impact welfare and public health policies, as well as patient care.
Measuring linkage quality with hashed identifiers: An example using PAYE - ASHE
Authors: Goode Hannah , Hampton Jen , Huck Rachel 
Published: September 2023

ObjectivesADR-UK supplied the Wage and Employment Dynamics (WED) research team with Pay as You Earn (PAYE) data linked to Annual Survey of Hours and Earnings (ASHE) data. This presentation explains the methodology taken to link PAYE and ASHE databases together, along with quality assurance and analysis of the linked data.
MethodsThe data were primarily linked using deterministic linkage methods on an encrypted National Insurance Number (NINo) variable. A total of four Pay as You Earn tables were linked to the ASHE data.
Where a PAYE table contained an encrypted NINo variable, the PAYE table was linked to the ASHE database using exact matching on NINo. Where a PAYE table did not contain an encrypted NINo variable, the table was linked to another PAYE table with an existing NINo variable first and then linked to the ASHE data.
ResultsAs multiple HMRC tables were linked to the ASHE database, the linkage rate for each table varies. However, at least 0.93% of each PAYE table linked to the ASHE database. As the ASHE data is based on a 1% sample of employee jobs taken from HMRC’s PAYE records, these linkage rates are considered relatively high.
To compensate for loss of variables needed to calculate linkage quality, the data was filtered into categories on the ‘sex’ and ‘age’ variables and the linkage rates analysed. Bias analysis associated to records with a missing NINo value was also investigated. When the records with a missing NINo value were excluded from calculations, the linkage rate for each table rose to 1%.
ConclusionThis data will be used to assist research outputs that focus on low-pay labour markets and wage progression, wage inequalities and employment. The presentation will also discuss challenges overcome and lessons learnt from this project, with suggestion of how this information can be used to improve ADR-UK projects going forward.
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: Rogers Imogen , Cooper Max , Memon Anjum , Ford Elizabeth 
Published: September 2023

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.
Health inequalities in Covid-19 deaths and hospital admissions in Wales
Authors: Robinson Lucy 
Published: September 2023

ObjectivesThis analysis examines the impact of confounding/mediating factors on health outcomes, comparing inequalities in COVID-19 associated hospitalisations and deaths with inequalities in other causes of admissions. This includes how socioeconomic inequalities are explained by mediating factors such as underlying health conditions, ethnicity, and occupation.
MethodsWe created a cohort of the Welsh population using anonymised individual-level linked data in the Secure Anonymised Information Linkage (SAIL) Databank. We used logistic regression of COVID-19 outcomes using the Welsh Index of Multiple Deprivation (WIMD) as a predictor to understand how the coefficient for WIMD is changed when other variables (such as comorbidities, smoking status, BMI, etc.) are added. Other variables including overcrowded housing and occupation, were also explored to further understand whether these kinds of confounding factors may mediate inequalities or if outcomes are more influenced by other unobserved causes.
ResultsInitial analysis shows that age-standardised hospital admission, ICU and death rates were roughly twice as high in the most deprived vs least deprived WIMD quintiles in Wales. The overall slope index of inequality was estimated to be 215, meaning the gradient of mortality is 215 per 100,000 higher in the most deprived WIMD quintile compared with the least deprived WIMD quintile. Thus, showing an inequality gap in relation to COVID-19 deaths between the most and least deprived. We estimated Years of Life Lost per 1,000 due to COVID-19 as 28.9, with a variation between WIMD quintiles of 38.4 for the most deprived and 22.2 for the least deprived. The project produced regression formulas to see the contribution of different confounding factors.
ConclusionThis study built on existing research findings and further explored the reasons for known socioeconomic inequalities in relation to COVID-19. Insights from this study have broadened the knowledge around the impact of mediating factors and could therefore contribute to future pandemic preparedness.
Social Statistics Transformation: Understanding the population through the production of ethnicity statistics from administrative data
Authors: Mylles Alex , Collins Charlie 
Published: September 2023

ObjectivesThe decennial censuses provide rich data on the ethnic composition of England and Wales. However, there is a need for more frequent statistics to allow us to better understand population change over time. Our ambition is producing annual population statistics by ethnic group down to local authority level and below.
MethodsAdmin-based ethnicity statistics have been produced by linking ethnicity information from admin data (from schools, further education and the NHS) to an admin-based Statistical Population Dataset (our population base) to produce our best estimate of the population characteristics. This latest iteration of the research includes additional Welsh data and uses the most recent population base for 2021. A set of rules have been used to deal with multiple ethnicity records for a person, with focus groups conducted with the general public to gauge the public acceptability of our approach.
ResultsWe will present the results from the latest version of the admin-based ethnicity statistics (to be published June 2023). The presentation explores the coverage achieved through linking together the multiple data sources and looks at how the admin-based estimates compare with the Census 2021 estimates. Earlier findings (published February 2023) indicate the admin-based estimates are getting closer to the Census figures, and that we have an ethnicity for approaching 9 out 10 people in the population. We hope to provide updated data showing the gap to Census decreasing and increased coverage. We will highlight some of the challenges in using administrative data sources to produce these statistics, in particular inconsistent coding of ethnicities across the admin datasets.
ConclusionWe will show how this research has fed into the 2023 Census Consultation and discuss the planned next steps in the research to address our outstanding challenges. This includes outlining our plans for record-level comparisons with Census 2021 in order to assess the quality of the admin-based estimates.
A public panel reviews applications and questions applicants: Team member and public contributor discuss a transparent and inclusive approach to data access reviews
Authors: Campbell Kirsteen , Whitehorn Rebecca , Browning Simon , Harmston Rebecca , Harris Ray , Huang Szu-Chia , Moylan Dianna , Williams Karen , Oakley Jacqueline , Evans Katharine , McLachlan Stela , Thomas Richard , Turner Emma , Flaig Robin , Boyd Andy 
Published: September 2023

ObjectivesWe created a panel with members of the public and longitudinal study participants who review our data access requests. This panel forms an integral part of our data access application process, giving the public a say who can access the data for research.
MethodsWe advertised our lay member vacancies using social media, newsletters, word of mouth and the internet. We appointed six people to the public panel. Our panel includes study participants, NHS service users, parents, carers, and people with experience of disability, neurodiversity, and long-term health conditions.
The Panel Terms of Reference were created with help from stakeholders and study teams involved in longitudinal studies that involve the public in data access applications. This ensured that the purpose of the panel was clear. The panel reviews lay summaries and makes sure that researchers have adequate public involvement in their project.
ResultsPanel members have reviewed 28 applications. Researchers present their research at an online meeting with the panel then answer questions from the panel members. We publish meeting minutes on our website for transparency.
A 6-month review was overwhelmingly positive - all panel members indicated they felt valued. They felt able to challenge and question researchers as part of the data access application process. This provides a level of public scrutiny to our work.
“I feel there’s a real value in the panel. You get a real sense that this has got such potential to make a contribution.” (panel member)
We are further developing the Panel Terms of Reference with panel members. We will consider additional areas of responsibility, for example, public benefit review.
ConclusionWe regularly review how to improve public involvement in our work. The panel has proven its value during our application process. Therefore we are exploring with the panel a new approach to assess the public benefit of applications and what is meant by ‘public benefit research’.
Infant feeding method and special educational need in 191,745 Scottish schoolchildren: A national, population cohort study
Authors: Adams Lisa , Pell Jill , Mackay Daniel , Clark David , King Albert , Fleming Michael 
Published: September 2023

BackgroundInfant breastfeeding has been associated with reduced incidence of childhood physical and mental health problems. This study investigated relationships between infant feeding methods and the risk of Special Educational Need (SEN).
MethodsA retrospective population cohort of schoolchildren in Scotland was constructed by linking together health (maternity, birth, and health visitor records) and education (annual school pupil census) databases. Inclusion was restricted to singleton children, born in Scotland from 2004 onwards with available breastfeeding data and who attended local authority mainstream or special schools between 2009 and 2013. Generalised estimating equation models with a binomial distribution and logit link function investigated associations between infant feeding method at 6–8 weeks and any-cause and cause-specific SEN, adjusting for sociodemographic and maternity factors.
FindingsOf 191 745 children meeting inclusion criteria, 126 907 (66·2%) were formula-fed, 48 473 (25·3%) exclusively breastfed, and 16 365 (8·5%) mixed fed. Overall, 23 141 (12·1%) children required SEN. Compared with formula feeding, mixed feeding and exclusive breastfeeding were associated with decreased any-cause SEN (OR 0·90, 95% CI 0·84–0·95; and 0·78, 0·75–0·82), and SEN attributed to learning disabilities (0·75, 0·65–0·87; and 0·66, 0·59–0·74), and learning difficulties (0·85, 0·77–0·94; and 0·75, 0·70–0·81). Compared with formula feeding, exclusively breastfed children had less communication problems (0·81, 0·74–0·88), social-emotional-behavioural difficulties (0·77, 0·70–0·84), sensory impairments (0·79, 0·65–0·95), physical motor disabilities (0·78, 0·66–0·91), and physical health conditions (0·74, 0·63–0·87). Feeding method was not significantly associated with mental health conditions or autism.
InterpretationMany women struggle to exclusively breastfeed for the full 6 months recommended by WHO; however, this study provides evidence that a shorter duration of nonexclusive breastfeeding could nonetheless be beneficial with regard to the development of SEN.
‘My Data’ project: Understanding the perceptions of administrative data usage for research of people who use drugs
Authors: Marryat Louise , Biazus-Dalcin Camila , Booth Hazel , Gray Sarah , Love Joan , Mohan Andrea , Thekkumkara Sreekanth 
Published: September 2023

ObjectivesAdministrative data research requires trust that data will be used sensitively and wisely. People who use drugs are frequently stigmatised, and trust may be a particular barrier. This project aims to understand the perceptions of people who use drugs around the use of their administrative health data for research purposes.
MethodsThis project will work with Restoration Fife, a third-sector organisation based in Fife, Scotland, that supports people who use drugs. We are conducting focus groups exploring how administrative health data are used in research from the perspectives of people who use drugs, including discussion around different types/sources of data. Data will be analysed using the Framework approach. We will also work with an artist and members of Restoration Fife, to co-produce a short, animated film about how administrative data are used in research around drug use, in order to educate the wider population about how their data are used.
Results*This presentation will discuss findings from the focus groups on the perceptions of usage of administrative data for different types of research. It will also discuss the use of administrative data in the context of findings from previous studies involving general populations and populations with other vulnerabilities, such as care-experienced populations and people with mental health difficulties. We will also provide a viewing of the film within this paper session.
*This project is funded by Research Data Scotland and runs from April to September 2023: all results will therefore be available by the time of the ADR conference in November 2023.
ConclusionsEvidence suggests low levels of public awareness of how and why data are used. We know little about perceptions of people who use drugs, for whom trust of services may be a particular issue. This study uses innovative methods to provide a platform for voices rarely heard in this context.
Risk factors for admission and length of stay in hospital for children with and without congenital anomalies: A EUROlinkCAT study
Authors: Given Joanne , Garne Ester , Morris Joan , Loane Maria , EUROlinkCAT Working Group  
Published: September 2023

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.