bluuebunny/crossref_metadata_2025_split huggingface dataset:
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.
Methodological developments in administrative data linkage for cross cutting policy relevant research: Working towards a sustainable data pipeline
Authors: Turner Emma , Hampton Jen , Huck Rachel , Melson Clare , Powell-Bavester Jason , Goodman Alissa , Ploubidis George , Flaig Robin , Boyd Andy 
Published: September 2023

ObjectivesDevelop administrative linkages within a national Trusted Research Environment (TRE) that hosts Longitudinal Population Study (LPS) data for over 20 LPS. We will describe the methodological development carried out to enable linkage to administrative datasets. These linked administrative data will support research for public good, informing policy and practice.
MethodsThe first sets of administrative data under consideration in this Feasibility Study are from the Department of Work and Pensions (DWP), the Department for Education (DfE) and HM Revenue and Customs (HMRC). Working with UK Government departments through a Task & Finish group we have gathered input from DWP, HMRC and DfE and Office for National Statistics (ONS) data sharing experts. The Task & Finish group identified three pragmatic data linkage and data sharing models, that would enable data to be linked via a newly designed secure data pipeline in a legal, secure, and trustworthy manner for all stakeholders.
ResultsTo encourage sustainability and acceptability, a model designed to be maintained over a long period is based on the re-use of Departmental Personal Identifiable Information (PII) – i.e., name, date of birth, gender, National Insurance number - and attribute data already deposited by the Departments into ONS. ONS will develop for the linkage and extraction of ONS Data into the TRE a system which conducts, and quality assesses the linkage; minimises the Departmental data to participants within the TRE only and the variables specified in the agreements; and, de-identifies the data to their DEA processing standards. The minimised and functionally anonymous data extract will be securely transferred for ingest and integration into the TRE enabling researchers to address a wider range of questions for public benefit.
ConclusionThis is a model for efficient and low-burden linkages to inform cross cutting research. It will form part of a responsive UK data science capability which can inform government research needs and be used to meet future crisis e.g. new pandemics, the impacts of climate change or economic shocks.
Active travel to schools in Wales
Authors: Turner Samantha , Fry Richard , Griffiths Lucy , Lyons Jane , Johnson Rhodri , Mizen Amy , Lyons Ronan 
Published: September 2023

ObjectivesActive travel to school (ATS), such as walking and cycling, not only reduces carbon emissions and air pollution but also contributes to a myriad of health benefits. Understanding the ‘potential’ for ATS across Wales is poorly understood yet vital to inform policy and practice aimed at increasing ATS.
MethodsUsing geospatial techniques, network distances have been calculated for all residences to all schools in Wales. Distances for each residence were de-identified and imported into the Secure Anonymised Information Linkage (SAIL) databank using SAIL’s split file approach. Within SAIL, anonymised distances were linked to encrypted school locations and a cohort of approximately 440,000 children attending a state school in Wales as recorded in the Education Wales (EDUW) dataset. Travel distance to school was subsequently filtered for each child within our cohort.
ResultsThe incorporation of geospatial network derived origin-destination pairs (n=2,205,000,000) allows us to explore how households can engage in ATS, and how this varies by primary/secondary school, welsh-speaking, urban/rural, and socioeconomic status. Initially we will present findings based on distance alone, with future refinements to encompass other factors influencing ATS including: active travel routes, road safety, and topography. We will link our results to anonymised ATS survey responses in SAIL, to calculate specific ATS distance thresholds by age, deprivation, and urban/rural status, including social indicators such as household composition.
ConclusionCurrently there is limited local or national comparable information on the potential for ATS in Wales. This baseline information is urgently needed to inform ATS policy and planning, and to ensure appropriate ATS interventions are prioritised for schools and communities where need is greatest.
Novel linkage of health and prison data in Scotland: Investigating access to services for mental health and substance use following release from prison
Authors: Connell Catriona , Kjellgren Richard , Savinc Jan 
Published: September 2023

ObjectivesTo compare the use of NHS services for mental health and substance use (MH/SU) between people released from prison and the general population. This paper describes the data linkage and analytical process, discusses policy implications and highlights the methodological contributions for future administrative data research in public health and justice.
MethodsRetrospective cohort study using linked Scottish health data and the Scottish Prison Service (SPS), involving all individuals released from prison in 2015 (n = 14,000), and a random general population sample (n = 70,000), matched on index date, age, sex, and postcode. Analysis will include descriptive comparison of service use between the two cohorts. Multiple regression models will be fitted to examine the influence of confounding variables in service use, and multilevel models will specifically assess cross-level geographical variation where feasible.
ResultsResults of the data linkage and analysis to date will be presented. This research will contribute to understanding the complex range of contacts people have with health services for MH/SU following imprisonment. It is the first research in Scotland to provide a national-level description of access to health services for MH/SU among people released from prison and offer a comparison to the general population. It also explores within-group differences in service access for people released from prison.
ConclusionThe linking and analysis of multiple justice and health-related datasets will provide crucial evidence to inform future healthcare delivery for justice-experienced populations. This research also advances our understanding of public health approaches and administrative data research in justice-related contexts.
Introducing best practice for reproducibility in government
Authors: Munro Megan , Delong-Smith Patrycja , Matthews Pete , Charlton Loes , Lyons Megan , Tucker James 
Published: September 2023

There is an appetite to improve the reproducibility of quantitative analysis undertaken across government. Our team supports conversion of regular publications into Reproducible Analytical Pipelines (RAP). To achieve this, we developed a roadmap to work with analysts in our organisation and help them transform their pipelines and build their skills.
An audit of the current RAP status of all regular pipelines assisted in resource allocation and planning. The maturity of a RAP is evaluated on 7 criteria required to reach a minimum viable product (MVP) and 7 additional advanced criteria as outlined by the Analysis Function (AF). We use a combination of hands-on pair-coding with analysis teams, regular and ad hoc code reviews, and training sessions to convert existing pipelines into RAPs, while simultaneously upskilling the analysts. We have also developed guidance and training documentation to share internally and externally.
Currently, out of 73 regular publications, 12 have reached the MVP, with an average score of 4.36 out of 7. This scoring is reassessed monthly, allowing us to track the progress in real-time. Self-assessment of technical skills increased by between 43% and 89% and 97% said their understanding of RAP principals improved because of the training and 77% said they are now able to implement best practice into their work. By working with the pipeline owners instead of just refactoring the code directly, we are ensuring business resilience. The in-depth knowledge of the pipeline and skills required to maintain it are present within the analysis team. Publishing our methods, documentation and tools facilitates adoption of RAP for those without a dedicated RAP team.
We are on track to convert all our regular publications into RAPs and move to “RAP by default”, in line with the AF RAP Strategy. This will improve the reproducibility, quality, efficiency, transparency, and trustworthiness of analysis within government. We hope other organisations can learn from our methods.
Educational and employment outcomes associated with childhood traumatic brain injury in Scotland: A population-based record-linkage cohort study
Authors: Visnick Meghan , Pell Jill , Mackay Daniel , Clark David , King Albert , Fleming Michael 
Published: September 2023

ObjectivesTraumatic brain injury (TBI) is a leading cause of death and disability among young children and adolescents and the effects can be lifelong and wide-reaching. This study aimed to compare the educational and employment outcomes of Scottish schoolchildren previously hospitalised for TBI with their peers.
MethodsA retrospective, record-linkage population cohort study was conducted using linkage of health and education administrative records. The cohort comprised all 766,244 singleton children born in Scotland and aged between 4 and 18 years who attended Scottish schools at some point between 2009 and 2013. Outcomes included special educational need (SEN), examination attainment, school absence and exclusion, and unemployment. Logistic regression models and generalised estimating equation (GEE) models were run unadjusted and then adjusted for sociodemographic and maternity confounders.
ResultsOf the 766,244 children in the cohort, 4,788 (0.6%) had a history of hospitalisation for TBI. Following adjustment for potential confounders, previous TBI was associated with SEN (OR 1.28, CI 1.18 to 1.39, p < 0.001), absenteeism (IRR 1.09, CI 1.06 to 1.12, p < 0.001), exclusion (IRR 1.33, CI 1.15 to 1.55, p < 0.001), and low attainment (OR 1.30, CI 1.11 to 1.51, p < 0.001). There was no significant association with unemployment 6 months after leaving school (OR 1.03, CI 0.92 to 1.16, p = 0.61). Excluding hospitalisations coded as concussion strengthened the associations.
ConclusionChildhood TBI, sufficiently severe to warrant hospitalisation, was associated with a range of adverse educational outcomes. These findings reinforce the importance of preventing TBI where possible. Where not possible, children with a history of TBI should be supported to minimise the adverse impacts on their education.
The trials and tribulations of linking real-world data: When research doesn’t go quite as planned
Authors: Hodges Helen 
Published: September 2023

ObjectiveDrawing upon learning from bringing youth justice data into SAIL Databank, this paper will focus some of the challenges associated with using real world data, and the implications that this for the research.
MethodsAs part of a feasibility study model how the probability of further offending changes over time for children looked after relative to their peers, two local authorities agreed to share historic risk assessment data. This was then linked to linking education, social services, health and family court data. The temporal coverage of the data was such that records did not go back to birth in many instances, and the chaotic lifestyles of some of the data subjects meant that it was not possible for an ALF to be created.
ResultsAn examination of the match rates highlights where there may well be issues for other researchers wishing to understand the vulnerabilities and circumstances of those in the criminal justice system through larger datasets. Whilst the quality of the data provided placed limitations on the study, the exercise also demonstrated the potential opportunities afforded by data linkage to identify how best to support those with complex lives as they navigate the justice system. As one of the first Welsh studies, this study highlights the richness of the social science datasets available to researchers who are concerned with interface between justice and devolved policy areas.
ConclusionWhilst not all of the objectives of the study could be realised, the insights gained represent a methodological advancement, and contribute to understandings of the realities of working with real world data.
Embedding an engagement exercise into an administrative data research project: An example focussing on Gypsy, Traveller and Roma young people and their families
Authors: Vizard Polly , Obolenskaya Polina 
Published: September 2023

ObjectivesThe presentation reports findings from the ADR funded project ‘Testing and demonstrating the value of the Growing Up in England dataset: Gypsy, Traveller and Roma case study’. It will (1) address the rationale for embedding an engagement exercise in this project; (2) set out methodology and findings; and (3) draw broader implications for administrative data research.
MethodsTwo engagement workshops were co-organised with the civil society organisation Friends, Families and Travellers (FFT). Recruitment was via FFT outreach networks and young people aged 14-29 and their broader family groups were invited to attend. Participants included Romany Gypsies, Traveller and Roma young people and family groups, ensuring diversity of experiences and perspectives. Informed consent was obtained from all participants (and from parents/carers for under 18s). The purpose of the engagement exercise was to hear directly from Gypsy, Traveller and Roma young people about issues raised by our analysis of the newly linked Growing Up in England (GUiE) dataset.
ResultsFeedback from the workshops explores the educational experiences of Gypsy, Traveller and Roma young people and their families and provides important insights into barriers to educational progression and unmet needs for support. Additionally, feedback from the workshops provides new insights into the views, perspectives and experiences of Gypsy, Traveller and Roma young people and their families relating to administrative data collection and data use. One key concern highlighted by workshop participants is that the disclosure of Gypsy, Traveller and Roma identity in administrative data collected by schools, hospitals and other public services could result in discrimination or other forms of adverse or hostile treatment.
ConclusionsThe findings from the engagement exercise have important implications for our GUiE project and for broader reflection on public attitudes to administrative data. Additionally, the exercise enabled us to address NSDEC recommendations on engagement. However, engaging with Gypsy, Traveller and Roma young people has involved specialist input, time, funding and additional ethics review, which all require careful consideration and planning.
Primary-school recorded special educational needs in children born with major congenital anomalies in England: A population-based study using the Education and Child Health Insights from Linked Data database
Authors: Lewis Kate , Peppa Maria , De Stavola Bianca , Hardelid Pia , Gilbert Ruth 
Published: September 2023

ObjectivesWe provide a national overview of survival to primary school and recorded special educational needs (SEN) provision among children with hospital identified major congenital anomalies (MCAs) born in England. We also report changes before and after government reform of SEN in 2014.
MethodsWe created a cohort of 6,180,400 singleton children born in England between 1 September 2003 and 31 August 2013 using linked administrative health and education records (from the ‘ECHILD’ database). MCAs were identified using hospital admission and mortality records during infancy. We used at least one record of SEN in state-school records as a proxy for SEN provision. We quantified: survival to age 5 using Kaplan-Meier survival analysis; the prevalence of recorded SEN during primary school Years 1 to 6; and the difference in proportion of children with recorded SEN in Year 1 before and after the 2014 government SEN reforms.
ResultsChildren with any MCA had 5-year survival rates of 95.1% (95% confidence interval, CI, 95.0, 95.2), compared with 99.7% (95% CI 99.7, 99.7) among children without a MCA. 41.5% (75,202/181,328) of children with an MCA attending state-school between Year 1 and 6 had any recorded SEN compared with 25.6% (1,282,979/5,008,624) of children without a MCA. Of the 12 system-specific MCA subgroups, children with chromosomal, nervous system and eye anomalies had the largest prevalence of recorded SEN. The prevalence of recorded SEN decreased by 4.9% (95% CI -5.3, -4.4) for children with any MCA compared with a reduction of 4.3% (95% CI -4.4, -4.2) for children without a MCA, when comparing pupils in Year 1 before and after 2014.
ConclusionRecorded SEN among children with hospital identified MCAs was markedly higher than for those without MCAs, however more than half had no recorded SEN. Our findings suggest government reform in 2014 reduced SEN provision for children with MCAs.
Linking prison health care data to other health data: A novel data linkage study in Northern Ireland
Authors: Cooper Janine , O’Reilly Dermot , Kelly Trish , Kirk Richard , Gray Ruth , Donnelly Michael 
Published: September 2023

ObjectivesWe describe the progress made in the development of a novel linked database designed to improve understanding about the health, mental health, health service use and mortality risk of people following their release from prison in Northern Ireland (NI).
MethodsThis is a collaborative project between the ADRC-NI and the NI Healthcare in Prisons service (HIPS) - South Eastern Health and Social Care Trust (SEHSCT). Data about the health of all adult prisoners between 2012 and 2021 (HIPS) will be linked to a healthcare population spine (National Health Application and Infrastructure Services - NHAIS) via a Health and Care Number (HCN), a unique health identifier for each patient in the NHS in Northern Ireland. Data will subsequently be linked to prescribing data (Enhanced Prescribing Database - EPD), in-patient services data (mental health) and mortality data (General Register Office - GRO).
ResultsEthical and governance approvals have been obtained. A stepwise approach to the development of this novel health database will be presented. Data cleaning has been undertaken by the HIPS team and records with missing HCNs have been identified and updated. Extraction of prison health data is underway for N=14,898 individuals and N=34,213 custodial episodes. Individuals may have more than one prison episode during the study period. Electronic and manual modes were used to extract 25 health-related variables from prison records. Data will be transferred to the Honest Broker Service (HBS), the trusted research environment for health and social care in NI, for data de-identification and linkage, and data access for analysis. Preliminary results and lessons for other related data-linkage projects will be presented and discussed.
ConclusionWe will describe our progress regarding the development of a novel health dataset comprising routinely collected administrative data and our work about prisoner health. We will report about our experience of assessing data access, cleaning, extracting, and analysing data and the linkage possibilities with respect to the prison health dataset.
Use of Microsoft Power BI to display pregnancy related performance statistics within NHS trusts
Authors: Hugh Oliver , Gardosi Jason 
Published: September 2023

ObjectiveWe wanted to create a dashboard that allowed midwives and doctors to monitor the performance of their NHS Trust by viewing the statistics relating to their performance in identifying babies at risk due to not growing well in the womb (small for gestational age, SGA), the single largest cause of stillbirths and subject to national guidelines and reporting requirements. Antenatal detection of SGA allows clinicians to undertake further investigations and plan for a timely delivery.
MethodThe use of Power BI instead of a solution requiring software development allowed the data analysis team to be in control of creating the application and facilitate a streamlined updating process. We used the dashboard feature, dropdowns and radio buttons to display statistics relating to the rate of identification of SGA at antenatal ultrasound scan as a proportion of all babies that are SGA at birth (sensitivity) as well as false positivity. The dashboard is contained within the web-based application to monitor growth during antenatal care. Applying the row level security feature with DAX formula, we were able to personalise the report for each Trust depending on who logged into the web-app.
ResultsThe application facilitates monitoring performance of the service in real time, longitudinally by month, quarter and year as well benchmark cross-sectionally against network/regional and national averages. The dashboard lets clinicians access their information in a clear and secure manner without the need for a separate link. The ready availability of data allows Trusts to enact policies to improve their performance and ultimately prevent avoidable deaths, and has contributed to the year on year decline in stillbirth rates in units that have been running this application.
ConclusionDevelopment of this dashboard has resulted trusts being more aware of their own data to promote improvements in antenatal care.