bluuebunny/crossref_metadata_2025_split huggingface dataset:
Exploring care-experienced young people’s perceptions of the use of administrative data in research
Authors: Cummings Aimee 
Published: September 2024

Objective and ApproachData about people is generated every day and research based on administrative data, especially in the social care sector, is becoming more prevalent. This piece of work involves running a public engagement workshop alongside care-experienced young people with the aim to learn what young people understand when researchers say they will be using administrative data in their research.
Results The following questions will be explored:

What is understood by the terms ‘administrative data’ and ‘data linkage’?
What are young people’s thoughts on how their data is used?
What would they like to know about how their data is being used?
Can they think of reasons why you would not want their data to be used?
Do they think that the data that is collected (from a social worker, GP, etc.) accurately reflects their experiences?

As well as this, important aspects of the collection of administrative data will be discussed.
ConclusionsThe output of this piece of work will be an infographic. The aim is that this infographic will contain two facets. First, it will illustrate how administrative data is collected and used (including a life cycle of the data). Second, it will contain information that young people regard as pertinent to this topic and will contain quotes ‘for young people, for young people’.
ImplicationsThe infographic from this work can be used by other researchers as part of their own public engagement work with young people.
Up-skilling the next generation of researchers to analyse complex linked population-level datasets: ADR UK PhD studentships case study
Authors: Mir Saba , Oliver Emily , Gordon Emma 
Published: September 2024

ObjectiveAdministrative Data Research UK (ADR UK) has invested £1.9M in its first pilot PhD scheme, as part of a larger Training and Capacity Building Strategy to increase the capability of researchers trained to analyse complex linked population-level datasets. This session will highlight the successes and lessons learned in the first year of implementing this pilot in the context of a wider strategic drive to increase the number of data skills-focused PhD students in the UK.
Approach22 PhD projects from across the UK were selected for funding by an independent panel of experts. Students and supervisors joined a unique cohort receiving targeted support from ADR UK. Activities, events and resources were devised with advice from existing users of the data, including regular events and check-ins, training opportunities, an online Learning Hub and noticeboard, and establishment of themed networks and communities.
ResultsSupporting cross-disciplinary cohorts of students and supervisors who span the UK has come with its own challenges. These include accessing data through different models and gateways, addressing a variety of skills gaps, and developing community building approaches that address multiple needs and which sustain the momentum beyond formal in-person events.
Conclusions & Implications ADR UK's targeted support model will continue to evolve to ensure the students in this PhD cohort make the most of their experiences. We welcome the opportunity to connect with international colleagues about their experiences of programmes designed to up-skill the next generation of researchers to analyse complex linked population-level datasets.
Is Medium-term Exposure to Ambient Air Pollution a Risk Factor for Parkinson’s Disease?
Authors: Jahanshahi Babak , McVicar Duncan , Rowland Neil 
Published: September 2024

ObjectivesThis study used Census data from Northern Ireland linked to administrative data on prescriptions between 2010 and 2016, to examine the association between ambient air pollution exposure and the risk of Parkinson’s Disease (PD) onset. It contributes to this literature by providing new evidence in a comparatively low pollution context, using rich and nationally representative cohort data with comprehensive information on Parkinson’s Disease medications dispensed over an extended period.
ApproachWe estimated Cox Proportional Hazards models for the association between pollution exposure and PD onset as proxied by first receipt of PD medication, controlling extensively for potentially confounding factors at the neighbourhood, household, and individual levels. Estimates are presented in the form of hazard ratios for the effect of medium-term PM2.5 exposure on the risk of PD onset.
ResultsThere was a clear unadjusted association between medium-term exposure to ambient pollution and the risk of developing PD, with those experiencing higher exposures being at greater risk. Once individual, household and neighbourhood confounders were adjusted for, however, we found no evidence supporting such associations. However, there was evidence of a positive association with both PM2.5 and NO2 exposure for sub-samples by age and education.
ConclusionsThis study contributes to an emerging literature examining the association between ambient PM2.5 pollution and onset of PD. Despite finding an unconditional association, we find no evidence for an association once individual, family and contextual characteristics are controlled for, at least in the relatively low-pollution context of Northern Ireland.
Evaluation of the Adult Migrant English Program for the Australian Government Department of Home Affairs
Authors: Mitrou Francis , Nguyen Ha Trong 
Published: September 2024

Objective and ApproachThe Adult Migrant English Program (AMEP) is a free service to help eligible migrants and humanitarian entrants with low English proficiency to improve their English skills and elevate their participation in Australian society. In partnership with AMEP funder, the Australian Government Department of Home Affairs, we have completed a longitudinal research study analysing the effectiveness of AMEP by linking participant information for over 400,000 AMEP clients with administrative data from social services, taxation, and the national census, from 2003 – 2019. This is the first time AMEP participant data has been linked with other data assets and represents the most comprehensive evaluation of AMEP since program inception in 1948.
ResultsAMEP participation was associated with improved English proficiency of clients, especially when clients studied for longer periods. Migrants with higher levels of English on-entry had better labour market outcomes, higher income levels (male and female), lower rates of public housing tenancy, and were less likely to receive income support in the years following program exit.
ConclusionsWhile the design does not support true causal inference, this evaluation provides good evidence that AMEP is effective at improving English proficiency and suggests AMEP participation can improve a range of economic and social outcomes for eligible migrants with low English proficiency.
ImplicationsThe launch of these results coincided with new investment in AMEP and a broadening of eligibility criteria to make AMEP available to a wider range of migrants with low English proficiency.
Modelling The Effects of Multi-Indication Treatment for Multiple Long-Term Conditions Using Population-Scale Linked Electronic Health Records To Inform Healthcare Policy
Authors: Owen Rhiannon , Rafferty James , Lyons Jane , Lyons Ronan , Abrams Keith 
Published: September 2024

Background and ObjectivesHealthcare decision-making has previously focused on developing recommendations for single conditions. This research aimed to develop a modeling framework to estimate the effects of multi-indication treatment in people living with multiple long-term conditions.
ApproachUsing a case study in type 2 diabetes mellitus [T2DM], chronic kidney disease [CKD], and heart failure [HF], age-adjusted multistate models were used to estimate the effect of sodium-glucose cotransporter-2 (SGLT2) inhibitors as a multi-indication treatment. Baseline hazards were estimated using population-scale, individual-level, linked anonymized electronic health record (EHR) data for 613,195 individuals aged 55 to 85 years in Wales over a 20-year period. Hazard ratios for treatment effects compared to standard of care were obtained from randomized controlled trials for combinations of multiple-long term conditions and incorporated in a patient-level simulation.
ResultsSGLT2 inhibitors increased the estimated mean life expectancy from 0.02 (95% Confidence Interval (CI): -0.02, 0.05) to 1.44 (95% CI: 1.12, 1.74) years in people living with coexisting T2DM, CKD, and HF. The estimated gain in life expectancy was less than 0.5 years for individuals with T2DM, CKD, and HF in different temporally ordered sequences. The estimated mean time to develop HF increased by 3.1 (95% CI: 3.00, 3.24) and 1.34 (95% CI: 1.12, 1.56) years in individuals with CKD, and in those with CKD followed by T2DM.
Conclusions and ImplicationsThere is an ever increasing need to appraise interventions in people living with multiple long-term conditions to identify optimal treatment strategies and reduce polypharmacy. Multistate models applied to linked EHRs allow for a more rigorous assessment of treatment effects to inform healthcare policy.
The employment, retention and exit of public school teachers in New Brunswick, Canada: an analysis using linked administrative data
Authors: McDonald Ted , Miah Pablo 
Published: September 2024

ObjectiveAs in many jurisdictions, New Brunswick (Canada) is facing increasing shortages of K-12 school teachers as retirements loom at the same time that the school age population of NB continues to exceed long term trends. The purpose of this retrospective study is to analyze the recruitment, retention and exit decisions of teachers in the NB public education system in order to support ongoing planning around teacher staffing.
ApproachThe analysis uses a unique linked administrative data combining province-wide individual-level teacher employment data, immigration records, university graduation data and public health insurance registration on NB teachers and individuals who obtained a B.Ed. degree in NB. Data are accessed through the secure facilities of the NB Institute for Research, Data and Training. The analysis includes both descriptive statistics and econometric methods appropriate to the particular outcomes of interest.
ResultsThe analysis will present results on three types of labour market transitions: 1) from NB university education to employment as a NB teacher. 2) exits from employment as a teacher, including both retirement and pre-retirement exits, and 3) decisions of ex-teachers about remaining in NB. The potential effects of a range of demographic, geographic and system-level factors on these outcomes are considered.
Conclusions and ImplicationResults from the analysis of entry to and exit from K-12 teaching in NB will be vital to human resource planning for a province dealing with looming retirements, growing labour shortages and an increasing population. Future work will consider subject-specific teacher shortages in critical fields like STEM.
Transitions of care for people living with dementia – insights using linked data
Authors: Gearon Emma , Wyatt Bronwyn , Evans Ingrid , Fraser Megan , Raymer Ann-Kristin , De Crespigny Fleur , Dunford Melanie , Sparke Claire 
Published: September 2024

Objective People living with dementia have increasing care needs as their condition progresses, and tend to be high users of health and aged care. Linked data provide an opportunity to better understand transitions between services, to enable quality and timely care.
Approach The pilot study used a new multi-source enduring linked dataset to analyse the use of health and residential aged care by Australians living with younger onset dementia between 2011–2016. The subsequent study focused on movements between hospital and residential aged care for older Australians who were hospitalised in 2017.
ResultsThe younger onset dementia cohort comprised 5,400 Australians aged 30–69. More than half (58%) the cohort had moved from the community into residential aged care by the end of the study period. Of these, 21% had a hospital stay while living in the community that ended with entry to residential aged care. This important transition point was analysed further using a dementia cohort of 79,000 people aged 65 and over. One in 4 people (23%) with dementia who were living in the community moved into residential aged care within 7 days of a hospital stay. This group spent 20 days longer in hospital than other older people. People living in aged care were less likely than those in the community to return to hospital during the following year.
ConclusionsThese results can help inform planning of community-based dementia support services, improve coordination of care, and investigate sources of delay for people awaiting entry to aged care.
A UK Specification for Trusted Research Environments
Authors: Sood Hari , Li Simon , Machin Tim , Oldfield Katie , Chuter Antony , Beggs Jillian , Coleman Sonya , Kerr Dermot , Chalstrey Ed , Craddock Matthew , Madge Jim , Sarmiento-Perez David , Robinson James , O'Donovan Cian , O'Reilly Martin , Cole Christian 
Published: September 2024

ObjectivesThe need for Trusted Research Environments (TREs) is clear. Several influential reports have highlighted that personal or sensitive data which have been collected for operational, commercial or governmental reasons need to be managed securely in an environment that encourages best practices.
TREs are designed to enable only authorised projects and researchers access to sensitive data whilst minimising risk of data exposure. Yet the TRE landscape has grown organically over at least the last decade resulting in heterogeneous environments, making it harder for data to be discovered, shared and used for public benefit.
A baseline specification for TREs is required.
ApproachWe engaged with around 60 organisations covering government, industry, health and academia through regular, online, shared spaces or “Collaboration Cafés”. We also embedded the public voice within the project by having members of the public within the research team and developed a series of workshops to include and reflect their input to the architecture. The whole project was developed in the open to instil trustworthiness.
ResultsThe SATRE project has produced a reference TRE architecture and implementation through significant engagement with the UK TRE community. This baseline specification for UK TREs includes a set of four pillars, 28 capabilities and 160 statements.
Conclusions and ImplicationsAn open and transparent TRE specification and architecture for a wide range of stakeholders has been developed. TREs can now use the SATRE specification to evaluate their environments against a common baseline.
Poverty and Intellectual Development in Childhood.
Authors: Roos Leslie , Detillieux Gilles 
Published: September 2024

Objectives and ApproachThe effects of the timing and duration of economic deprivation and maternal mental health on intellectual development is researched using unique linkable databases following almost 90 thousand children born in the Canadian province of Manitoba.
This paper studies such questions as:

How important are differences in measurement of poverty in assessing intellectual development?
How do various differences change over childhood?

ResultsConcentrating on those born in 2000-2002 generated a total of 7,424 children having scores on all six measures of intellectual development. Such person-specific information controlled for many individual factors and extended from ages 5 through 17.
Major differences were found in the scores associated with exposure to the two kinds of poverty and to poor maternal mental health.
In summary, differences emerge by age 5, with administration of the Early Development Index. These differences are largely the same at age 8, even though another measure (the Grade 3 Competencies Index) is used.
ConclusionsIf household poverty is taken as a definition of poverty, poverty seems much more important than maternal mental health in affecting a child’s intellectual development. However, if neighborhood poverty is used to define poverty, maternal mental health and poverty have effects on childhood intellectual development which are more similar. Definition plays a critical role in interpretation.
ImplicationsThese population-based data, with multiple measures and multiple time points, suggest many analytical possibilities. If childhood conditions are included, the list of medical conditions which might correlate with intellectual development multiplies.
Hospital admissions among adolescents in out-of-home care or special educational needs in England: insights from the ECHILD database of linked health, education and social care records
Authors: Blackburn Ruth , Zylbersztejn Ania , Kokosi Dora , Heys Michelle , Gilbert Ruth 
Published: September 2024

ObjectiveWe quantified planned and unplanned hospital admissions during adolescence for children with special educational needs (SEN) or placed into the care of the local authority (child looked after in out-of-home care; CLA).
ApproachWe analysed linked hospital, education and social care records with whole nation coverage of England (ECHILD). Our cohort comprised pupils who started secondary school between 2007/8 and 2011/12 (aged 11), with follow-up until 2018/19 (up to 17-22 years old). Hospital admission rates were examined by sex across distinct groups with varying levels of support: i) no support, ii) school-based SEN only, iii) higher SEN (an Education and Health Care Plan) only, iv) CLA only, v) SEN and CLA, and vi) higher SEN and CLA. Negative binomial regression models were used to estimate rate ratios (RR) for each group relative to no support.
Results The study population totalled 2,827,464 children; 65% (1,835,404) had no support, 30% (848,620) SEN only, 3% (93,620) higher SEN only, 1% (30,880) SEN and CLA, with the remaining groups accounting for <1%. Planned and unplanned hospital admission rates were higher for girls than boys. Planned admission rates were highest among younger children in both higher SEN groups. CLA groups had the highest rates of unplanned hospital admissions, especially girls aged 13-15 years with higher SEN (RR: 7.69, 95% CI: 6.86-8.65). A significant proportion of all unplanned admissions in adolescence were mental health-related.
ImplicationsOur findings highlight significant unmet health needs, particularly in mental health, among care-experienced adolescent girls with SEN in their mid-teens.
The Data Linkage Hub: a Community of Practice
Authors: Lewis Esther , Huck Rachel , Cummins Sarah 
Published: September 2024

Objective and ApproachThis paper discusses the Data Linkage Hub (DLH) which is a centre for data linkage excellence and aims to produce and support the delivery of high quality, linked data assets for researchers in the UK. Here, we will give an overview of the DLH’s activity as a Community of Practice for Data Linkage.
ResultsWe will discuss the different project types conducted in the DLH; the methods used ranging from bespoke linkage development to the adoption of generalised methodologies; and the customers of the DLH.
We will also discuss the tools the DLH have developed, and make available to others, to standardise, streamline and improve quality assessment of linkage. This will include clerical matching tools known as CROW and the CMS, BAT, a bias analysis tool, and a package of PySpark code specifically developed for data linkage.
In addition, we will explore the data linkage training materials we offer for different audiences and our involvement in a Data Linkage Champions Network, both increasing the awareness of data linkage and promoting best practise.
Conclusion and ImplicationsThe impact of the DLH’s work is far reaching, underpinning statistical outputs, research and public policy. This success is down to the creation of a community of practice bringing together experts to regularly update and discuss linkage.
Establishment of an Australian National Master Linkage Key (NMLK) between AIHW Health Linkage spine (HLS) and Jurisdictional Master Linkage Keys (MLK) - NSW example
Authors: Ougrinovski Elena , Paine Clinton , Cooper Natalie , Nair Pooja , Smith Michael , Voruganti Rama Devi , Smith Merran , Flack Felicity 
Published: September 2024

ObjectivesThis paper describes a Population Health Research Network project establishing the NMLK as a national linkage system utilising an enduring linkage between national and jurisdictional linkage spines. It used keys from existing enduring linkages within each participating jurisdictional Data Linkage Unit (DLU). The process is demonstrated with reference to an enduring map between AIHW Health Linkage Spine (HLS) and Centre for Health Record Linkage (CHeReL) MLK.
ApproachThe NMLK has jurisdictional sections. The NSW section was established in four steps.

CHeReL provided data from its regularly updated MLK for the NMLK project authorised by existing project ethics approval.
AIHW linked NSW MLK subset to HLS and the de-identified linkage map and report were sent to CHeReL for review.
CHeReL reviewed the results, particularly the additional duplicates identified through the linkage process. The agreed links form the AIHW-NSW section of NMLK quarantined for a year.
The annual update, scheduled for later in 2024, will focus only on linking the new and unlinked individuals in both datasets.

ResultsThe NSW cohort was supplied with almost 50 million records, comprising over 14 million unique person ids. Of these, 12 million were matched with reasonable confidence to HLS, or 84.4% of the total (or around 97% if we exclude NSW records with missing personal information and around 140,000 individuals out of scope of HLS.)
Conclusion Establishment of the NMLK enabled effective production of high-quality enduring linkage maps used across multiple cross-jurisdictional projects while minimising the privacy risks.
Kids’ Environment and Health Cohort
Authors: Adedire Tolu , Lewis Esther , Stephenson Dilly , O'Connor Nathan , Quinn Leah , Goode Hannah 
Published: September 2024

This presentation discusses Kids’ Environment and Health Cohort (KEHC), a bespoke Administrative Data Research UK (ADR UK) funded linkage project. KEHC will be a comprehensive and yearly updated dataset for children born in England from 2006 onwards, integrating health, education, pregnancy, and environmental data. This integrates data from different administrative systems including the Office for National Statistics, the National Health Service, and the Department for Education as well as open environmental data.
This presentation will outline the deterministic and probabilistic linkage methods utilised and the quality assurance undertaken through clerical review and bias analysis. Additionally, we will delve into the challenges encountered in the process of data ingest, linkage, and delivery due to the diverse origins and purposes of the collected data, as well as temporal disparities. In navigating the intricacies of multiple linkages, we will discuss our unique methods, including plans to use an indexing first approach.
The first cohort of approximately 10 million children has been created to form the spine and further linkages to the 2011 and 2021 UK census data have been concluded. Linkages between address histories and open environmental data is ongoing. Linkage results have been promising, with high match rate and excellent quality.
KEHC is a powerful example of how integrated data can be used for research for the public good.
KEHC will provide a unique opportunity for academic researchers investigating the longitudinal effects of local environments on children’s health and educational outcomes and will become one of ADR UK’s flagship Research Ready Datasets.