bluuebunny/crossref_metadata_2025 huggingface dataset:
“It’s complicated”: Carer perspectives on causes of eating disorders in family members.
Authors: Fletcher Louise , Trip Henrietta , Watterson Roma , Lawson Rachel , Wilson Nicki , Jordan Jennifer
Published: September 2023

Objective: This qualitative study investigated perspectives on
causes of eating disorders as experienced by those caring for affected
individuals with an eating disorder in New Zealand. Method:
Participants were nine carers of affected individuals, recruited from an
online survey, who consented to semi-structured qualitative interviews.
Inductive thematic analysis was undertaken to identify themes from the
data. Results: The overall theme informed by the data was ‘It’s
complicated’, reflecting carer perspectives that eating disorder causes
were complex and multifactorial. This theme was supported by sub-themes
of; ‘it’s like Swiss cheese’; ‘it came out of the blue’ and ‘in
hindsight maybe…’. Most participants indicated potential eating
disorder causes had not been formally explored with treatment teams,
although carers had reflected on possible causality across the treatment
journey. Conclusion: All participants expressed uncertainty
when reflecting on what factor(s) may have caused an eating disorder in
their family member. Participants reflected that causes were likely a
complex combination of environmental, social, psychological and
biological influences. Future research would benefit from data analysis
of dyads of carers and affected individuals who identify significant
recovery from the eating disorder, in order to reflect back upon
possible causes without the demands of treatment or continuing eating
disorder symptomatology.
Comparative assessment of the depth of invasion of early-stage oral cavity carcinomas based on intraoral ultrasound and computerized tomography findings
Authors: Markovic-Vasiljkovic Biljana , Antic Svetlana , Jelovac Drago
Published: September 2023

Background/Aim. The depth of invasion of oral cavity carcinoma (OCC) and the nodal involvement define the treatment selection, outcome, and prognosis of the disease. In determining the stage of OCC, the most widely applied methods are computerized tomography (CT) and magnetic resonance imaging (MRI), whose limitations can be overcome to some extent by using intraoral ultrasound (IOUS). The aim of the study was to evaluate the imaging presentation of early-stage OCC, determine the depth of invasion (DOI) and the greatest diameter (GD) of the tumor using the IOUS and CT methods, and compare them with histopathological (HP) findings. Methods. The study was designed as a prospective one, with a time limitation of three months. Eleven patients with clinical early-stage OCC underwent a native CT examination of the head and neck as well as a contrast-enhanced phase, and then IOUS of the lesion was performed. Using both methods, DOI and GD values were measured, and the values were correlated with HP findings. The analysis of the obtained data was per-formed using the statistical package SPSS 22 and Pearson correlation coefficient. Results. A significant correlation (p = 0.001) was established between the DOI values measured by IOUS and CT examination with the measurements obtained by HP processing. On the other hand, by comparing the GD measured on IOUS and CT examination, no correlation was established with the HP report. Conclusion. Measurements of DOI obtained by IOUS significantly correlated with those in the HP report, while overcoming the limitations of the CT method in the evaluation of small-sized tumors and tumors that cannot be shown due to artifacts.
Pruritic Palpable Purpura on the Lower Legs: A Quiz
Authors: Iinuma Shin , Kobayashi Takahiro , Ishida-Yamamoto Akemi
Published: September 2023

Abstract is missing (Quiz)
Income and immunity: The consequences of a pre- and neo-natal income shock on childhood infection risk
Authors: Doyle Mary-Alice , Schurer Stefanie
Published: September 2023

ObjectivesThe experiences and conditions that children are exposed to in utero and early infancy impact their health in adulthood. Understanding the channels through which these effects emerge is important, because this may help us to anticipate which children are at highest risk of adverse effects, and provide early interventions to help. In this paper, we test a new channel linking perinatal experiences to later-life health: immunity.

MethodWe use administrative birth records, linked with hospital admissions episodes and primary care consultations for children in the Northern Territory of Australia. This data forms part of the Child and Youth Development Partnership data linkage project. We analyse the impact of a shock to household income in Aboriginal communities, resulting from a change in government transfer policy. We estimate the impact of exposure to this shock in utero or in the first 3 months of life, relative to exposure later in childhood, to isolate the impact of an income shock during this key developmental period.

ResultsWe find that children who were exposed to the shock in utero or in their first three months of life were at higher risk of severe infection requiring hospital admission. They spend, on average, 4.5 more days in hospital from birth to their 6th birthday (a 45 percent increase). Most of this impact is concentrated in admissions for infection. Only a small share of the effect can be explained by the immediate impact of the policy on birthweight.

ConclusionOur findings are consistent with the explanation that an income shock worsens nutrition, and that worse nutrition during key developmental stages can permanently weaken children’s immune systems. This finding speaks to the importance of attention to key phases in childhood development, when designing policies that affect households’ financial resources. Furthermore, we find birthweight is a poor predictor of childhood hospital admission. However, use of longitudinal administrative data helps us to identify alternative markers of new-born health that are better predictors.
What’s the big idea? Identifying research priorities using linked data
Authors: Henderson Hollie , Bridges Sally , Pickett Kate , Wilsdon James
Published: September 2023

ObjectivesTo develop an engagement method to identify and prioritise local evidence gaps around child and maternal health, that could be addressed using linked routinely collected data from the Born and Bred in (BaBi) studies.

MethodsWe developed a pragmatic, 2-hour online workshop method to engage local stakeholders and members of the public to identify research priorities. Stakeholder groups included parents, early years practitioners, commissioners, and service providers.

The workshop involves two parts. The first part places attendees into groups with people from similar stakeholder type backgrounds to discuss areas of child and maternal health they think are important for research using linked routinely collected data. The second part places attendees into new, multidisciplinary groups to prioritise the suggestions put forward in the first part, based on criteria of urgency and importance.

ResultsA pilot workshop identified 17 important and urgent research priorities. Key themes included maternal and infant mental health, diet and childhood obesity, Covid-19, inequalities, infant feeding and labour and delivery. This engagement method has successfully been applied in five local areas that are BaBi study sites. The outputs from these workshops have informed a pipeline of projects for the BaBi Network. Research is currently being carried out that addresses one of these research priorities.

Many of the identified research priorities were not suitable for linked data research. Based on the workshop discussions, it is recommended that an understanding of the information captured in routine datasets is developed amongst stakeholders and members of the public, to allow them to better engage with linked data research.

ConclusionIt is possible to engage a wide range of stakeholders including practitioners, commissioners, service providers and parents in a 2-hour workshop to prioritise research questions to be answered using linked routine data. This is important if research using these data is to inform local decision-making."
Policing the pandemic in Scotland: Using administrative data to measure underlying inequalities
Authors: McVie Susan , Gorton Victoria , Matthews Ben
Published: September 2023

Objectives

In March 2020, police were given temporary powers to enforce the new Coronavirus Health Protection Regulations.Our research asks:

How was non-compliance (as measured through police-issued fines) related to other underlying health and social inequalities?

What level of COVID-19 risk did those who failed to comply pose?

MethodsThis project securely links, at an individual level, a dataset of all COVID fines issued by Police Scotland to a range of health and social administrative data. This data includes: information from healthcare settings on mental ill health, alcohol problems and drug addictions; geographic data on household type and occupancy; and government data on deprivation and deaths. The dataset has also been linked to a matched sample of controls (individuals who were not fined), and to COVID testing data, allowing us to examine the extent to which individuals who were fined posed a health risk to wider society.

ResultsOur results show that those who were fined were more likely to be living with underlying health and social inequalities than the matched controls. However, these differences did reduce over the course of the pandemic, most likely reflecting a combination of changing policing practice and weakening public compliance with the restrictions. Although not without limitations, testing data suggests that those who were fined were not substantially more likely to test positive for COVID during the pandemic than matched controls who were not fined. This raises questions about the role of police enforcement during a pandemic.

ConclusionThis research is the first time police data has been linked to health and social care data in Scotland. Our findings demonstrate the considerable value of data linkage for understanding the challenges of policing public health whilst also allowing the empirical evaluation of policy decisions at scale.
Understanding the disparity of educational attainment in Northern Ireland: The role of socio-demographic and school-level factors on GCSE attainment.
Authors: Early Erin , Miller Sarah , Dunne Laura , Moriarty John
Published: September 2023

ObjectivesThis study examined the individual and collective impacts of socio-demographics and school-level factors on GCSE outcomes in Northern Ireland, using linked administrative data. A pupil’s sex, religious affiliation and socio-economic background (measured by eight measures) were examined, along with parental socio-economic background, attended school type (grammar/non-grammar) and school management structure.

MethodThis study used the first linked administrative dataset for education in Northern Ireland. The dataset linked the 2011 household Census, School Leavers Survey (2010-2014) and School Census (2010-2014) for the first time. Data were provided for three pupil cohorts who completed their GCSE examinations in consecutive academic years (2010/2011 – 2012/2013).

The study conducted multilevel models to understand the nested effects of pupil-, household- and school-level factors on GCSE attainment outcomes. Interaction models were also executed to examine the multiplicative effects of a pupil’s sex, religious affiliation and socio-economic background on their educational attainment.

ResultsThe findings of this study highlight that the impact of socio-economic status is multidimensional, with some measures having a greater impact on GCSE attainment than others. For example, a mother’s education qualifications had the largest impact of socio-economic measures included in the multilevel models. The analysis also found that Free School Meal Eligibility remains an important predictor of attainment outcomes. When considering pupils’ sex, females had higher GCSE attainment scores than males. However, religious affiliation had a varied influence on GCSE outcomes, indicating the need for a more nuanced approach when considering this factor. The importance of interaction terms to gain an in-depth understanding of the multiplicative effect of factors on attainment outcomes was also highlighted in the analysis.

ConclusionThrough the use of linked administrative data, this study highlights the hierarchy of socio-economic effects on GCSE attainment outcomes in Northern Ireland. It also highlights the importance of collectively considering the factors that make up a pupil’s demographic profile to garner a holistic understanding of attainment trends in Northern Ireland.
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: McSweeney Tim
Published: September 2023

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.
The impact of the Covid-19 pandemic restrictions on children entering and leaving care in Scotland
Authors: Soraghan Joanna , Raab Gillian , Troncose Patricio
Published: September 2023

ObjectivesThe Covid-19 pandemic caused huge upheaval across the world, and the Scottish children’s social care sector was not exempt from this. This study explored the extent to which the Covid-19 pandemic restrictions impacted on the rate at which children and young people were entering and leaving care in Scotland.

MethodsAnalysis was conducted on the Scottish Government’s ‘Longitudinal Looked After Children’ dataset which contains information on the care journeys of all children who were ‘looked after’ in Scotland between April 2008 and July 2021. Through a descriptive analysis, the study determined how the pandemic restrictions impacted the rates of children entering care, the rates of children leaving care, and the stability and duration of care placements at this time.

ResultsDuring the initial year of the pandemic, there was a marked reduction in the number of children both entering (38%) and leaving (22%) care when compared to the year prior. The reduction in entries to care were less notable for infants under the age of 1 than it was for older age groups. Fewer children entered care under compulsory measures, with an increased proportion entering through ‘voluntary’ Section 25 measures. The impact on entries to care and exits from care varied substantially across local authorities in Scotland. The stability and duration of children’s placements were also impacted, with children moving placements less and staying in care for longer periods of time.

ConclusionThe pandemic restrictions had a substantial impact on the interactions of children and young people with the ‘care system’. At a time where there is great focus on improving the experience of young people in care within Scotland, it is important that lessons are learned and implemented for future disruptive events.
The effect of education participation on youth custody: Causal evidence from England
Authors: Dickson Matt
Published: September 2023

ObjectivesThis paper estimates the effect of continuing in education post-16 on the probability of experiencing youth custody at ages 17 and 18, addressing the issue of non-random selection into continued participation to derive a causal estimate.

MethodsWe exploit the natural experiment created by the ‘raising of the participation age’ (RPA) in England. Unlike previous cohorts who could leave education aged 16, young people starting the final year of compulsory schooling in September 2012 were required to continue in education or training until the end of the school year in which they turned 17, and those starting the final year in September 2013 were required to continue until age 18. Using linked National Pupil Database and National Client Caseload Information System data we utilise the variation in participation between cohorts that the RPA induced to estimate the causal effect of continued participation on custody outcomes at ages 17 and 18.

ResultsThe effect of the law change was to increase the proportion of young people participating in education at age 17 by 1.7pp (1.2pp) for boys (girls), from a base of 82.1% (85.0%) prior to the reform. Despite this increase in participation, there was no effect on the probability of custody when aged 17 or 18. This suggests that the 0.64pp (0.04pp) reduction in probability of custody associated with continued participation for boys (girls) estimated without addressing the selection issue, is actually capturing the effect on custody probability of the unobservable characteristics of those who choose to continue in education beyond 16. Results are robust to different estimation methods and different treatment specifications.

ConclusionThe negative relationship between education and crime is well documented but the decision to remain in education beyond the compulsory age is not random. Evidence here suggests that the cross-sectional reduction in probability of custody associated with continued education is driven by the unobservable characteristics of those who voluntarily continue their education rather than reflecting a causal effect of education.
How common is low pay in Britain? New findings from linked data
Authors: Forth John , Bryson Alex , Phan Van , Stokes Lucy , Ritchie Felix , Whittard Damian
Published: September 2023

ObjectivesThe Annual Survey of Hours and Earnings (ASHE) is the main source of public statistics on low pay in Britain. As part of the ADR-funded Wage and Employment Dynamics Project, we identify and adjust for non-response biases in ASHE and generate new estimates of the incidence of low pay.

MethodsWe linked the ASHE data to the Business Structure Database – a research-ready version of the UK’s official register of businesses. This linked dataset enabled us to identify which types of employers were more or less likely to respond to ASHE in a given year, and to generate non-response adjustments to the existing ASHE weights.

We then used the unique personal identifier on ASHE to link observations across years. We compared rates and correlates of longitudinal attrition in ASHE with rates and correlates of employment exit observed in the ONS Annual Population Survey, generating longitudinal weights to account for non-random attrition.

ResultsWe find that jobs in smaller organisations, younger organisations and those in the private sector are under-represented in the annual achieved samples from ASHE, relative to their prevalence in the wider economy. The percentage of jobs paid at or below the National Minimum Wage is under-estimated by around one fifth if one does not take account of these cross-sectional response biases.

We find that longitudinal attrition is more likely to affect younger employees and those with low job tenure. However, we do not find that estimates of the rate at which employees move off the National Minimum Wage to higher rates of pay are biased by non-random patterns of longitudinal attrition.

ConclusionData linking enables us to identify observable response biases in the UK’s official source of earnings statistics (ASHE). These biases affect our view of the bottom of the wage distribution, and have the potential to affect decisions around a key area of government labour market policy.
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.
The potential of data linkage for improving social care provision
Authors: Rossetti Magdalena , Hood Rick
Published: September 2023

ObjectivesThe main objective of the project was to link case-level data from Children’s Social Care (CSC) service with household-level data on means-tested benefits, in order to analyse the dynamic relationship between families’ financial situation and the demand for CSC services at the household level.

MethodsThe study was a secondary quantitative analysis of administrative data from one local authority in England. After completing research ethics review and data governance procedures, monthly data on families receiving housing benefits and council tax benefits payments were linked to child-level data on referrals to CSC services over a two-year period. The match was carried out based on personal identifiers, and once the linkage process was complete, a pseudonymised linked dataset (containing no personal identifiers) was used for all subsequent analyses.

ResultsWe find that it is feasible to link children’s social care and benefits data. Our findings demonstrate a significant overlap between households receiving means-tested benefits and those referred to CSC services, underscoring the fact that most referrals involve low-income families. Our study further indicates that the children referred to CSC services primarily reside in deprived areas characterized by limited access to housing and services, as well as poor housing conditions. Additionally, we observed that children in households experiencing financial strain are twice as likely to be referred to CSC services.

ConclusionLinking benefits data with CSC referrals can shed light on important questions related to the relationship between poverty and demand for child welfare services. For example, mechanisms through which poverty drives demand for child welfare services, including the role of persistent poverty, financial precarity, reductions or disruptions to benefits payments, unemployment, overcrowding, rent increases, evictions, etc.