bluuebunny/crossref_metadata_2025 huggingface dataset:
Linked administrative data can inform policy and practice: An academic - government research partnership in South Australia.
Authors: Pilkington Rhiannon , Montgomerie Alicia , Malvaso Catia , Haag Dandara , Gialamas Angela , Gialamas Angela
Published: September 2022

ObjectiveTo describe how the Better Evidence Better Outcomes Linked Data (BEBOLD) platform has been used to partner with government agencies to generate evidence to support service reform that contributes to improving outcomes for children and families in contact with the child protection system.
ApproachData was drawn from the BEBOLD platform, a whole-of-population linked de-identified administrative data platform for all children in South Australia born from 1991-2016 (n~500,000), as well as their parents. Data linked included birth registrations, perinatal statistics, child protection services, family health services, education, youth justice, housing and homelessness, emergency department presentations and hospitalisation, as well as adult drug and alcohol services.
ResultsWe present case studies illustrating how the BEBOLD platform has been used to 1) investigate the descriptive epidemiology of child protection contact patterns with a focus on priority populations (e.g. young parents); 2) describe service interactions of child protection populations in a way that highlights prevention potential (e.g. the overlap between public housing and child protection); and 3) identify policy defined target populations to inform contracting of support services (e.g. estimate counterfactual reunification rates for a defined population to inform development of a Social Impact Bond).
ConclusionUsing linked data to take an intelligent system view of potential priority populations can inform policy and service delivery in a resource restricted setting. Descriptive epidemiology of child protection contact patterns, population sizes, transitions, and characteristics can aid services to explore elements of service or system design including eligibility criteria.
Reflections as a settler person doing research in collaboration with Indigenous peoples.
Authors: Harrap Benjamin , Gibberd Alison , O'Donnell Melissa , Simons Koen , Eades Sandra
Published: September 2022

ObjectivesTo reflect on my position as a settler person in Australia and ensure Indigenous voices are prioritised throughout my research, as part of a co-designed, Aboriginal-led study which aims to understand trends in the removal of Indigenous children born in Western Australia using data linkage and qualitative research.
ApproachAs a non-Indigenous person, it is important to reflect on my cultural background and acknowledge my limited understanding of the cultural context of the Indigenous communities represented in the data. Listening to Indigenous voices and collaborating with Indigenous peoples at all stages of my research – from my PhD supervisor to investigators on the broader study, to members of the community and policy reference groups – will be key to improve my understanding of the data from a system and context I am unfamiliar with.
ResultsCollaboration has been cyclical, with results from the qualitative research and discussion with the reference groups informing the initial quantitative research direction. Findings from this research were presented back to the groups, resulting in further questions and directions to explore.
The journey so far has been one of learning and understanding the skills I have and the role they can play whilst acknowledging the limits of my own knowledge and the need for Indigenous voices to guide the research in order to be doing research with Indigenous peoples, rather than on them.
ConclusionCo-design with Indigenous peoples is critical for doing research which affects them or uses data from their communities. Understanding my own cultural background and acknowledging the limitations of my experience continues to be important for honest and meaningful collaboration.
Trends in the removal of Aboriginal children in Western Australia.
Authors: Harrap Benjamin , Gibberd Alison , O'Donnell Melissa , Simons Koen , Eades Sandra
Published: September 2022

ObjectivesTo understand in greater detail the rates of interaction Indigenous children have with the child protection system in Western Australia and how they vary by birth year, geographic region, and between family units.
ApproachWe used data linkage between the Western Australian Department of Communities (child protection data), the Midwives Notification System, and Deaths Registry. Our cohort consisted of all Aboriginal and/or Torres Strait Islander children born in Western Australia between 2000 and 2013, with child protection data available from 2000 to 2015. We used cumulative incidence curves to visualise the overall rates of interactions with the child protection system and decompose interactions using seven two-year birth cohorts, geographic child protection regions and family units.
ResultsOverall, the cohort there was a high level involvement of Indigenous children in the child protection system, with over 50% having at least one notification, 27% having a substantiated notification, and 15% ever having a placement in out-of-home care. When examining by birth cohort, the more recently born the birth cohort the earlier their first interactions with the child protection system tended to be. Results for the geographic and family unit analyses will be presented as this work is ongoing.
ConclusionIncreasing interactions occurring at earlier ages coincides with legislative and policy changes. The increase in placement in out-of-home care before the age of 1 for the most recently born cohorts warrants further investigation into whether this is occurring across the system or within particular communities or regions.
A blueprint for enduring human services cross-jurisdictional data linkage, adapted to achieving outcomes for people with disability.
Authors: Cottee Passiona , Camacho Ximena , Cooper Natalie , Irvine Katie
Published: September 2022

ObjectivesPeople with disability represent 1 in 6 Australians and use services provided across multiple levels of government. Data is siloed between different governments and service systems, limiting visibility and ability to improve outcomes. Our objective was to progress people-centred data sharing across jurisdictions at scale, focused on people with disability.
ApproachMore than 140 engagements with the disability community, governments, researchers, and service providers were conducted to ascertain user and data needs; systematically map enablers and barriers to data use; and outline the requisite technical capabilities and social license for a disability asset. Five demonstration projects tested novel linkage approaches, data flows and access models to inform technical aspects of the design. We adopted an iterative try-test-learn approach and forged consensus through extensive dialogue across all stakeholders to collaboratively design a system for enduring data linkage. The final design was reviewed by external experts to ensure best practice and build trust.
ResultsA national disability-focused data asset requires linking data across all human services portfolios, as will be required for most national assets seeking to improve outcomes for particular communities or in particular domains. The proposed approach is three building blocks: national data linkage and integration infrastructure, national data system governance, and streamlined data sharing agreements for multiple uses. Current project-by-project approaches to linkage are proposed to be replaced with new enduring national keys to connect disparate state-based infrastructure and enable streamlined, reusable data curation processes. Collaboration between jurisdictions will be embedded through joint governance of the new infrastructure. Finally, a new approach to data sharing agreements between Australian governments will be developed to create safe parameters for streamlined access within existing legislation and authorisation pathways.
ConclusionBy designing to meet information needs across human services, this approach can be leveraged for multiple linked, longitudinal enduring data asset, beyond disability. It multiplies the benefits of upfront efforts to share and improve data, reflects a shared understanding among stakeholders, and moves Australia towards scaled use of people-centred data.
Impacts of past occupational injury and long-duration compensated work disability on future hospital admissions.
Authors: Griffiths Daniel , Di Donato Michael , Lane Tyler , Gray Shannon , Iles Ross , Berecki-Gisolf Janneke , Smith Peter , Collie Alex
Published: September 2022

ObjectivesTo investigate changes in the prevalence and nature of hospital admissions towards the end of long-duration workers’ compensation claims (>2 years), and afterwards. To examine differences in hospitalisation when workers’ compensation claims end due to either a 260-week duration limit, or otherwise, and comparisons with hospitalisations of a community comparator.
ApproachA retrospective cohort study examined 2475 workers, termed the s39 group, whose workers’ compensation ceased due to a 260-week limit in 2017/2018 under s39(1) of the Workers’ Compensation Act New South Wales 2012 legislative amendments (Australia). Comparator groups were injured workers with long-duration claims whose compensation ceased independently of s39 (termed the injured control group, N=3626) and a community group (N=8485). Workers’ compensation records were linked to national social security payments, and hospital admissions. Outcomes describe the prevalence and diagnostic categories of hospital admissions 12 months before, and after, the cessation of workers’ compensation stopped payments.
ResultsMusculoskeletal health conditions were common diagnoses in overnight hospitalisations for injured workers. Single-day hospital care for mental health disorders were more common for injured workers (17% of same-day admissions) than for members of a community control (3% of same-day admissions) across two years. Exiting the workers’ compensation scheme is associated with significantly fewer annual hospital admissions for the injured control group (OR 0.76), but not for the s39 group (OR 1.01). Injured workers with long-duration compensated work disability were admitted to hospital more often than the community comparator group during the year after workers’ compensation stops (s39 group: OR 1.55, injured control group: OR 1.30). Across all study groups, hospital admission was more common for people receiving disability social security benefits and older age groups.
ConclusionPolicy change in the New South Wales workers’ compensation system introduced a 260-week limit on compensation, leaving workers with an elevated need for hospital care after their compensation ended. Welfare policies that disrupt key determinants of health require dedicated inter-agency provisions to support the elevated health needs of those affected.
Understanding South Australia’s blood products usage patterns and outcomes, using data linkage.
Authors: Palfy Miro , Radbone Christopher
Published: September 2022

ObjectivesThe purpose of this analytical activity was to ensure confidence in the technical capability for extracting, linking, and integrating public hospital inpatient data, public pathology blood transfusions records and blood tests, to optimise records linkage allowing patterns and trends to be then analysed with confidence.
ApproachThe SURE secure data platform was essential to ensure data governance and security requirements were met while integrating health data spanning 18 months (January 2018 - June 2019). Data sources came in multiple formats of varying quality. R was chosen for its data wrangling abilities and reproducibility.
The phases were:

Source data loading and cleaning
Linking hospital inpatient and blood transfusions records
Summarising linked transfusion data
Linking inpatient and blood tests data
Summarising linked tests data
Integrating hospital data with summarised transfusion and summarised tests data
Deriving additional variables based on summarised data

ResultsFrom 143,192 transfusion records, 55,053 (38.4%) were excluded as they did not meet the inclusion criteria (e.g., hospital or blood product out-of-scope).
From 7,897,451 blood test records, 238,013 (3.0%) were excluded, mostly of poor quality (missing/invalid hospital code).
Initially 91.4% of transfusion records were matched with hospital inpatient records. The linkage rate for state-wide blood test records was 62.3% for tests records, noting the low match rate was attributed to tests not performed on public hospital patients, as the blood test data was statewide.
Linkage process was improved by adding additional patient codes from public pathology’s internal patient identifiers. The linkage rate improved to 95.5% for transfusion records and 64.4% for test records.
Conclusion12 different data sources, with differing file types and formats, needed coding to achieve standardised results, enabling future reproducibility. Over one hundred business rules were implemented to produce a robust solution for future data updates. End results were analysed, and it was determined that linkage and integration quality exceeded previous similar attempts in terms of match rate and accuracy.
Socioeconomic factors, medication subsidisation and the use of preventative cardiovascular disease medications in Australia.
Authors: Paige Ellie , Banks Emily , Agostino Jason , Brieger David , Page Karen , Joshy Grace , Barrett Eden , Korda Rosemary
Published: September 2022

ObjectivesCardiovascular disease (CVD) events are highly preventable through appropriate treatment and disproportionally affect socioeconomically disadvantaged individuals. This study quantified the relationship of socioeconomic factors to dispensing and persistent use of lipid- and blood pressure-lowering medication following hospital admission for a major CVD event (myocardial infarction, ischaemic stroke/transient ischaemic attack).
ApproachData from 8,285 people with major CVD events aged ≥45 years from the Australian 45 and Up Study with linked medication dispensing data were used. Modified Poisson regression was used to estimate relative risks (RRs) for combined lipid- and blood pressure-lowering dispensing at three-months following hospital discharge and for 12-month persistent use, in relation to education, income, and level of medication subsidisation.
ResultsOverall, 56% were dispensed guideline-recommended medications at three months and 37% persistently used them across 12 months. After adjusting for demographic factors, type of CVD and history of CVD hospitalisation, RRs for lowest (no educational qualifications) compared to highest education level (university degree) were 1.14 (95% CI: 1.06, 1.22) for medication dispensing and 1.15 (1.02, 1.29) for persistent medication use; 1.14 (1.06, 1.22) and 1.17 (1.04, 1.32) respectively for lowest (<$20,000) versus highest (≥$70,000) household pre-tax income; and 1.25 (1.17, 1.33) and 1.28 (1.15, 1.43) respectively for those receiving highest versus lowest subsidisation. There was little to no evidence of a relationship of income and education to medication use after adjustment for medication subsidisation.
ConclusionsWhile preventive medication use is sub-optimal, subsidisation is substantially associated with increased use and accounts for most of the relationship with socioeconomic position, suggesting medication subsidy schemes are working in the intended direction.
Associations between household garden size and childhood obesity in Wales, UK.
Authors: Johnson Rhodri , Mizen Amy , Bailey Rowena , Griffiths Lucy , Fry Richard
Published: September 2022

ObjectivesPhysical inactivity directly contributes to the global issue of obesity. Small-scale garden-based interventions have positively impacted on children’s physical activity levels. However, no studies have objectively measured household gardens and assessed associations with childhood obesity on a population scale. We linked garden measures with administrative data for a national population.
ApproachOur cross-sectional study examined the relationship between garden size and BMI in 154,444 children aged 5 years living in Wales between 2013-2019. We linked garden size at the home location with individual-level BMI measurements and socio-demographic data in the SAIL databank; a secure research environment. BMI measures were derived from the Child Measurement Programme and were standardised using the LMS method. We calculated descriptive statistics for our cohort and used Generalised Additive Models to investigate associations between garden size and BMI. Our results include adjustment for confounding variables such as deprivation. We stratified our analysis by gender and rurality.
ResultsOur cohort consisted of 52% male and 49% females. 18% lived in the most affluent quintile and 28% lived in the most deprived quintile. 74% of the cohort lived in urban areas whilst 26% lived in rural areas. Average garden size was 176m2 and the mean number of individuals living in the home was 4. We found a non-linear statistically significant negative association between garden size and BMI (edf = 2.37, p < 0.01). When we stratified our analysis by gender, for males we found a linear statistically significant negative association between garden size and BMI (edf = 1, p < 0.01). For females we found a non-linear statistically significant association between garden size and BMI (edf = 2.67, p < 0.05).
ConclusionOur study is the first to link routinely measured objective household variables with BMI data for a national cohort. Our results suggest that garden-based interventions could be focussed on to increase physical activity in children. Further research is required to investigate the pathways between garden, physical activity and reducing obesity.
Linking Administrative Test and Trace Data to the Covid-19 Infection Survey to Improve Analysis of Positivity and Vaccine Effectiveness.
Authors: Booth Lizzy , Murphy Sarah
Published: September 2022

The COVID-19 Infection Survey (CIS) allows us to understand many aspects of the pandemic. To enable more in-depth accurate analysis on positivity and vaccine effectiveness we have needed to link the survey at pace to NHS Test and Trace (T&T) data to better inform policy decisions at the highest level.  
The complex nature of the T&T dataset has been challenging to the development of a robust linkage method capable of producing regular timely updates. The data first required extensive cleaning, editing and standardisation. A combination of deterministic, probabilistic, and associative linkage techniques was used to produce four pairwise linkages: T&T was linked to itself to create person-level test clusters and a unique person ID; CIS-Personal Demographic Service (PDS) and T&T-PDS linkage tables were then produced assigning NHS number to maximise the quality of the linkage between the datasets, before producing a final separate anonymised CIS-T&T linked product fit for analysts.  
Post-linkage quality assessment to estimate the number of false positives (false links) and false negatives (missed matches) was undertaken and utilised in the context of true positives to estimate precision (accuracy) and recall (coverage) of the linked method, both found to be over 98% for the CIS-T&T linkage. Continuous methodological development has significantly improved the linkage quality and match rate over time. The additional test data provided by the linkage enables analysts to identify participants testing positive between their scheduled monthly visits. This adds key missing information, enabling the level of protection from re-infection afforded by previous infection to be estimated with increased accuracy and reduced bias. Analysts can now access enriched linked datasets with confidence that the linkage method meets the required quality standards.
The analysis produced from this linked data has provided crucial evidence to government on re-infection and infection following vaccination, which has enabled more targeted public health policies to help avoid unnecessary economic harm. Widely published statistics have helped inform the public’s understanding of the pandemic and their personal risk.
Severe mental illness and quality of diabetes care: a retrospective national linked cohort study.
Authors: Scheuer Stine , Fleetwood Kelly , Licence Kirsty , Mercer Stewart , Smith Daniel , Wild Sarah , Jackson Caroline
Published: September 2022

ObjectiveTo use a Scottish national linked diabetes care dataset to determine whether annual monitoring of clinical guideline-recommended diabetes care indicators differ by severe mental illness (SMI) status among people with type 2 diabetes (T2D)  during the first year following diabetes diagnosis and thereafter.
ApproachWe examined receipt of 9 diabetes care indicators (HbA1c; cholesterol; urinary albumin; serum creatinine; blood pressure; retinopathy screening; foot examination; body mass index; and smoking status) in people with T2D diagnosed 2009-2018, comparing people with a prior hospital record of schizophrenia, bipolar disorder and depression versus no hospital record for any mental illness. We analysed receipt of care in the first year using logistic regression and for the entire follow-up period (until death or 31 December 2018) using generalized linear mixed effects models, adjusting for calendar year, sociodemographic and lifestyle factors and comorbidities (and in the latter, diabetes duration).
ResultsWe included 119,508 people with T2D (mean age 59.7 [±13.2 SD]), of which 1701 (1%), 768 (0.5%) and 5211 (3%) had schizophrenia, bipolar disorder and depression, respectively. During the first year, compared to people without mental illness those with each SMI were more likely to receive cholesterol and serum creatinine measurement and, for schizophrenia only, HbA1c measurement, after adjustment for confounding factors. People with depression had higher odds of receiving a smoking review, but lower odds of receiving urinary albumin measurement. Receipt of all other indicators were similar across comparison groups. In the longitudinal analyses, people with schizophrenia had persistently higher odds of receiving HbA1c and people with a SMI had lower odds of receiving retinopathy screening.
ConclusionReceipt of care delivered in the primary care setting was generally similar in people with versus without SMI in the short and long term. However, people with SMI were less likely to receive retinopathy screening, highlighting a need for better monitoring of care indicators delivered outside primary care settings.
Health service use of infants involved in family justice care and supervision proceedings in Wales: a longitudinal national data linkage study.
Authors: Farr Ian , Jones Carys , Cowley Laura , Alrouh Bachar , Cusworth Linda , Akbari Ashley , Doebler Stefanie , Broadhurst Karen , Odd David , Griffiths Lucy
Published: September 2022

ObjectiveWhen an infant is identified as having suffered or is at risk of suffering significant harm from parents or caregivers, section 31 care and supervision proceedings  (s.31, Children Act 1989) may be issued. We examined the healthcare use of infants under one year old subject to these proceedings in Wales.
ApproachA retrospective e-cohort study utilising data held in the Secure Anonymised Information Linkage (SAIL) Databank. General Practice records, emergency department attendances, and hospital admissions (non-elective and elective) were linked with family justice (Cafcass Cymru) data between 2011–2020 for all s.31 proceedings (n = 920). By comparing to the infant population not undergoing family law proceedings (n = 18179), regression models examined the incidence and rate of healthcare events between birth and the court proceeding application date. Wider determinants of health were sequentially added (infant perinatal factors, maternal mental health, sex, area-level deprivation). Reasons for healthcare events were also investigated.
ResultsThese models showed that infants who were subject to s.31 care and supervision proceedings were more likely to have required healthcare prior to proceedings than the comparison group. A similar pattern was shown for the rate of healthcare events. Even when wider determinants of health were included in the models, this difference was especially pronounced for incidence and event rate ratios for emergency department attendances, [incidence RR = 1.73, CI =  1.52–1.96; event RR = 2.08, CI = 1.82–2.38] and non-elective inpatient admissions [incidence RR = 2.91, CI = 2.57–3.28; event RR = 3.84, CI = 3.31–4.45]. Infants in s.31 proceedings were more likely to require healthcare for injury and poisoning, and other external causes.
ConclusionThis is the first population-wide evidence on the health of infants subject to s.31 care and supervision proceedings in Wales. These findings highlight the increased healthcare utilisation for this population. The study helps to build a better understanding of the needs and vulnerabilities of infants in the family justice system.
Examining the quality and sample representativeness of linked 1958 National Child Development Study and Hospital Episode Statistics data.
Authors: Silverwood Richard , Rajah Nasir , Calderwood Lisa , De Stavola Bianca , Harron Katie , Ploubidis George
Published: September 2022

ObjectivesIt is important to evaluate the quality of linkages between cohort and administrative data to discern the likely reliability of research using the linked data resource. We examined the quality and sample representativeness of linked 1958 National Child Development Study (NCDS) and Hospital Episode Statistics (HES) data.
ApproachWe examined the quality of the linkage in terms of the associations between key cohort member sociodemographic characteristics and successful linkage, and compared the levels of successful linkage within strata of NCDS variables which may be expected to be associated with hospital attendance (self-reported hospital attendance, self-rated general health, self-reported long-term illness), and hence with successful HES linkage. We additionally evaluated the population representativeness of the linked sample using external population statistics (hospital admission rates in the general population).
ResultsSome sociodemographic characteristics were found to be associated with successful HES linkage, with females slightly more likely than males (risk ratio 1.03; 95% confidence interval 1.00, 1.06) and those who had ≤ 1 person per room at birth more likely than those who had > 1.5 (1.12; 1.05, 1.19) to have linked data. There was a high level of correspondence between NCDS variables and HES linkage – e.g., 86.0% of cohort members who reported no day patient or in-patient attendance had no linked HES Admitted Patient Care (APC) data and 76.3% of those who reported having day patient or in-patient attendance did have linked HES APC data. The level and pattern of hospital admission rates over time was similar in the linked NCDS-HES data to the population statistics.
ConclusionThe quality and representativeness of the linked NCDS-HES data appears to be high. We hope that these analyses will both improve the quality and transparency of research using this linked data resource and encourage providers and users of other linked data resources to undertake and publish similarly thorough evaluations.
Public involvement in big data projects: an ethnographically-informed study.
Authors: Jones Elisa , Frith Lucy , Chiumento Anna , Rodgers Sarah , Clarke Alan , Markham Sarah , Buchan Iain
Published: September 2022

ObjectivesPublic involvement and engagement (PIE) is playing an increasingly important role in big data initiatives and projects. It is therefore important to gain a deeper understanding of the different approaches used.
ApproachThis study explores PIE using ethnographically-informed qualitative case studies. The case studies include: three citizen juries, each one carried out over eight days and that asked jurors to consider different real-world health data initiatives; and a public panel set up by a regional databank that carries out data linking. Data collection is ongoing and I will be continuing to carry out close observations of activities, and conducting semi-structured 1:1 interviews with those that organise and have taken part in the activities.
ResultsData collection so far comprises completed observations at the citizen juries (~96 hours), ongoing observations of the public panel meetings (~15 hours), and thirty semi-structured 1:1 interviews with public contributors and other stakeholders about their experiences of the activities they were involved in. Early data analysis indicates key themes of: jurors feeling heard, but unsure whether anybody was listening; stakeholders being impressed by informed jurors, but raising concerns over contributors becoming too ‘expert’; how who is at the table and what information is presented impacts what is discussed; differences between online and in-person participation; and public involvement not being a substitute for informing the public about how their data is used.
Conclusion‘Who’ is involved, and ‘how’ PPIE activities are designed and run can facilitate or constrain discussion, enhancing or limiting public contributions. If public involvement is to achieve its aims, including increasing trustworthiness, deeper consideration of these factors by those who seek the public’s views in their data projects is recommended.
BREATHE: The Health Data Research Hub for Respiratory Health.
Authors: Orton Chris , Ford David , Sheikh Aziz , Quint Jennifer , Tobin Martin , Hall Ian , Griffiths Christopher , Crompton Jonathon , Fletcher Monica
Published: September 2022

ObjectivesThe BREATHE Health Data Research Hub for Respiratory Health was formed in October 2019 as a multi-site academic consortium with multiple industrial partners via an Industry Forum and across its wider network. BREATHE’s main mission is enhancing data services within respiratory science, funded by the UKRI Industrial Strategy Challenge Fund.
ApproachBREATHE leveraged expertise across its founding sites and industrial partners to create data services which could be used by multiple sectors of collaborator. Across the founding sites, BREATHE was able to mobilise datasets housed within national TREs to form real-world evidence eCohorts for rapid and efficient respiratory study (Asthma, COPD, ILD), and has worked with specialists in cohort study and genomic data to house and supply these from within our partner TRE, SAIL Databank. As well as data assets, BREATHE is able to provide clinical and data expertise to collaborators for grant submissions and on bespoke respiratory science projects.
ResultsIncluding a significant period of work during the pandemic supporting COVID-19 research and also focusing on other respiratory disease science support, BREATHE is now well-placed to move towards a sustainable operating plan post-grant from March 2023. Due to the approach taken in maximising data services for multiple sectors, BREATHE is positioned to provide data linkage and sharing services (making use of its TRE, SAIL Databank), providing analytic and clinical support to respiratory research projects for customers in multiple sectors (Pharma, SMEs, Academia, NHS, Charities), and advancing synthetic data and software development, again in partnership with SAIL and our wider industry partners.
ConclusionAs of March 2022, BREATHE has established a portfolio of data services and projects interfacing with multiple sectors of collaborator in enhancing respiratory science projects across the UK. With population-level data assets representing Wales, Scotland, and England and the ability to work with the Northern Ireland infrastructure housed at Swansea University, BREATHE supports 4-nation respiratory science in RWE data, and provides clinical and data linkage expertise to studies such as longitudinal cohorts, pharma companies, and contract research organisations.
Using linked Hospital Episode Statistics data to aid the handling of non-response and restore sample representativeness in the 1958 National Child Development Study.
Authors: Rajah Nasir , Calderwood Lisa , De Stavola Bianca , Harron Katie , Ploubidis George , Silverwood Richard
Published: September 2022

ObjectivesThere is growing interest in whether linked administrative data have the potential to aid analyses subject to missing data in cohort studies. We aimed to identify predictors of cohort non-response in linked administrative data and examine whether inclusion of these variables in principled methods for missing data handling can help restore sample representativeness.
ApproachUsing linked 1958 National Child Development Study (NCDS) and Hospital Episode Statistics (HES) data, we applied a multi-stage data-driven approach to identify HES variable which are predictive of non-response at the age 55 sweep of NCDS. We then included these variables as auxiliary variables in multiple imputation (MI) analyses to see if they helped restore sample representativeness in terms of early life variables which were essentially fully observed in NCDS (mother’s husband’s social class at birth, cognitive ability at age 7) and relative to external population data (educational qualifications at age 55, marital status at age 55).
ResultsWe took as our starting point 57 variables derived from HES data based on the presence or number of different types of appointments/admissions, diagnostic codes and treatment codes. After application of our multi-stage data-driven approach we identified five HES variables that were predictive of non-response at age 55 in NCDS. For example, cohort members who had been treated for adult mental illness were almost 3 times as likely to be non-respondents (risk ratio 2.81; 95% confidence interval 2.05, 3.86). Inclusion of these variables in MI analyses did help restore sample representativeness. However, there was no additional gain in sample representativeness relative to analyses using only previously identified survey predictors of non-response (i.e. NCDS rather than HES variables).
ConclusionIn our applications, inclusion of HES predictors of NCDS non-response in analyses did not improve sample representativeness beyond that possible using survey variables alone. Whilst this finding may not extend to other analyses or NCDS sweeps, it highlights the utility of survey variables in handling non-response.
Mind the gap: an administrative data analysis of dental treatment outcomes and severe mental illness.
Authors: Ferry Finola , Rosato Michael , Leavey Gerard
Published: September 2022

ObjectivesOral health of people with severe mental illness (SMI) remains an important public health issue with some evidence pointing suboptimal dental health outcomes. We test the hypotheses that individuals with SMI have lower contact with dental services and higher levels of fillings and extractions. We also examine effect modification by age.
ApproachWe used linked administrative data from general practitioner (GP) records, hospital admissions data and dental payment system data to examine dental service use and treatments (extractions, fillings, crowns and x-rays) among the Northern Ireland hospital population between January 2015 and November 2019 (N=798,564). Logistic regression examined the association of SMI with dental service use and treatments, controlling for socio-demographic characteristics. In a further series of models, the interaction of SMI and age-group was examined.
ResultsAn estimated 1.2% (9,656) recorded an SMI diagnosis from hospital records at some point during follow-up. Over two-thirds (67.2%) of the non-SMI hospital population received any dental treatment compared with 62.2% of persons SMI-diagnosed. After adjusting for available socio-demographic characteristics, analysis indicated lower levels of dental service use (OR=0.80, 95% CI=0.77, 0.84), including lower likelihood of fillings (OR=0.81, 0.77, 0.84) and x-rays (OR=0.77, 0.74, 0.81), but higher levels of extractions (OR=1.23, 1.18, 1.29) among patients with SMI. We also found effect modification by age-group: while older age was generally associated with higher likelihood of extractions and crowns, interaction analysis points to lower likelihood of all four dental treatments among older individuals with SMI.
ConclusionsOur findings of lower engagement with dental services, lower levels of remedial treatments and higher levels of tooth loss raise concerns about availability, access, and promotion of routine dental care for people with SMI. There is a need for improved understanding of barriers to treatment and development of psychoeducational interventions.
Linkage of historical GB Census data to present day population registers.
Authors: Longley Paul , Van Dijk Justin , Lan Tian
Published: September 2022

ObjectivesThis research links, for the first time, individual level entire GB population census data for 1851-1911 to present day individual level population registers. Precise georeferencing of individual records using AddressBase Premium and further linkage to Indices of Multiple Deprivation (IMDs) enables family group analysis of inter-generational social mobility outcomes.
ApproachPresent-day individual names and addresses taken from Electoral Registers and consumer data are georeferenced and linked to IMD data using AddressBase. This enables calculation of average IMD scores for every family group (surname). Individual level names and addresses from 1851-1911 censuses are assigned to harmonised historical parishes. The present day surname IMD scores are attributed to every resident in the historical censuses. Parish average ‘future IMD’ scores are calculated to show which areas have bequeathed the highest and lowest IMD scores on their residents’ descendants. This is a measure of how ‘north – south divides’ shape inter-generational social mobility.
ResultsA linked data website, apps.cdrc.ac.uk/gbnames, profiles social mobility outcomes for 13,000+ family names, according to average neighbourhood quality experienced by family name bearers. There are clear and enduring regional divides in “future deprivation” inherited from ancestors by the present-day GB population. The research traces the origins of a north-south divide in England. Family roots in northern industrial cities are associated with unfavourable outcomes today. In Scotland, an east-west divide identifies eastern areas sharing similarly high levels of hardship to nineteenth-century industrial cities such as Liverpool and Manchester. Migration partially mitigates these inequalities, but most family groups remain concentrated in their ancestral heartlands, and continue to experience the long-term disadvantages bestowed by geographical location.
ConclusionSurnames provide an under-exploited way of linking precisely georeferenced geographies of entire historical populations to their descendants today. Additional linkage to areal deprivation measures makes it possible to evaluate how social and spatial inequalities both endure and are promulgated through the generations. Geography is destiny for much of the population.
Piloting and validating the linkage of routine ART and laboratory records in an HIV endemic setting.
Authors: Gareta Dickman , Onoya Dorina , Herbst Kobus , Bor Jacob
Published: September 2022

ObjectivesIntegrating clinical and laboratory data systems offers opportunities to understand disease aetiology and improve patient outcomes. We developed and piloted a data linkage algorithm to link HIV patient treatment records with routine laboratory service records in an HIV endemic setting in rural South Africa.
ApproachWe used data from the South Africa’s National Health Laboratory Service (NHLS) and Three Integrated Electronic Registers (TIER.Net) databases for 17 primary healthcare clinics from uMkhanyakude district, South Africa. The two databases contained data on key demographic variables such as patient first name, surname, date of birth, sex, and health facility, and national ID numbers for a subset of the data. We adapted a probabilistic record linkage algorithm we previously developed for linkage of laboratory results. We trained and validated our algorithm using two approaches: 1) firstly, we constructed a quasi-gold standard based on manual review of potential matches for 1,061 randomly selected patients; 2) secondly, we constructed a quasi-gold standard based on records that contained national ID numbers. We calculated the probabilities that the algorithm could correctly identify a true match (sensitivity) and the probabilities that the match identified by the algorithm was truly a match (positive predictive value) using the two approaches.
ResultsBetween 2015 and 2020, 55,077 patients were recorded in the HIV treatment database and 386,577 laboratory tests were recorded in the laboratory service database. The sensitivity and positive predictive value in the manually reviewed data were estimated to be 94.4% and 81.2% respectively. The sensitivity and positive predictive value in the matched individual identifiers were estimated to be 99.6% and 99.7% respectively.
ConclusionsRecords can be linked successfully, but estimated performance of record linkage depends on the validation set used. Manually reviewed data contain noise and may underestimate performance, while national ID numbers may overestimate performance due to non-random patterns of missingness.
Using linked administrative data to evaluate and improve the quality of end-of-life care in nursing homes.
Authors: Webber Colleen , Milani Christina , Clarke Anna , R Isenberg Sarina , Downar James , Kobewka Daniel , Hsu Amy , Lau Jenny , Sinnarajah Aynharan , Simon Jessica , Boese Kaitlyn , Arya Amit , Hannon Breffni , Roberts Rhiannon , Turcotte Luke , Howard Michelle , Maxwell Colleen , Tanuseputro Peter
Published: September 2022

ObjectivesPrescribing of symptom management medications may reflect the quality of end-of-life care provided to nursing home residents who are nearing death. The objective of this study was to examine variations in the prescribing of end-of-life symptom management medications in nursing home residents in the last 14 days of life.
ApproachThis was a retrospective cohort study of nursing home residents age 65+ who died in Ontario, Canada between January 2017 and February 2020. Through expert consultations, we compiled a list of medications used to manage common end-of-life symptoms. Using routinely collected health administrative data held at ICES, we linked resident data to prescription claims to identify whether residents were prescribed these medications in the last 14 days of life. We grouped nursing homes into quintiles according to the proportion of decedents in a home who received ≥1 prescription and examined variations in resident and facility characteristics across quintiles.
ResultsThere were 55,029 deaths across 626 nursing homes. Overall, 64.8% of residents received at least one end-of-life symptom management medication. The proportion of dying residents who received ≥1 end-of-life medication ranged from 37.6% in quintile 1, 59.8% in quintile 2, 69.1% in quintile 3, 74.8% in quintile 4, and 82.9% in quintile 5. Opioids were the most commonly prescribed medications, with an average of 62.2% of residents receiving a prescription (35.9% to 81.2% across the quintiles). Nursing home residents that resided in homes in the lowest prescribing quintile were older and more likely to be Allophones (first language not English or French). Low prescribing homes were also larger, with a higher number of beds, and were more likely to be in rural areas.
ConclusionThe observed variations in the prescribing of medications to manage end-of-life symptoms in nursing home residents raises concerns that some residents may have received inadequate end-of-life symptom management. Prescription data may provide an opportunity to rapidly evaluate the quality of end-of-life care in nursing homes at a population level.
Analysing linked 2021 Census and Admin data to inform population transformation statistics.
Authors: Pereira Elizabeth
Published: September 2022

ObjectivesTo analyse the linked dataset between England and Wales 2021 Census/Census Coverage Survey and the Demographic Index (DI), would provide insights on quality and coverage, enabling improvements of using admin data to form population/ household estimates for future linkages and to evidence additional admin sources needed to capture the population.
ApproachThe DI is a composite dataset made up of several linked admin sources. Therefore, the linked output is complex, made up of clusters where individual sources within the clusters have been linked to the Census using the different available information across sources. To carry out the analysis, a flagging strategy has been designed to enable analysts to form cuts of the linked dataset that are specific to their research needs. High level research questions have been designed to provide fast paced analysis to inform the National Statistician’s 2023 recommendation on the need for a future Census.
ResultsThe results will inform the National Statistician’s 2023 recommendation, but also the future delivery of  transformed population and migrations statistics . This includes:

Providing insight into how to improve the current linkage methodology of the DI
How we use the DI to construct Statistical Population Datasets (which use inclusion rules to establish the usual resident population)
Identifying the extent of over and under coverage in the Statistical Population Datasets, allowing development of an appropriate estimation strategy to more accurately estimate the population

The results will also inform how we utilise linked composite data sources in the future, as we can share the lessons learnt in how we planned to use the data, including our flagging strategy verses the reality faced when undertaking the analysis.
ConclusionThis analysis will inform approaches to using linked composite data in the future but also provide a wealth of knowledge including: informing linkage methods, defining the population estimation challenge and providing insights into how we deliver admin based population estimates.