bluuebunny/crossref_metadata_2025 huggingface dataset:
Intergenerational welfare and contact with the child protection system.
Authors: Procter Alexandra , Chittleborough Catherine , Pilkington Rhiannon , Lynch John
Published: September 2022

ObjectivesSocioeconomic disadvantage and poverty are considered important drivers of child maltreatment, particularly child neglect. We examine the prevalence, cumulative incidence, and notification rate of child protection (CP) contact among children who experienced intergenerational welfare contact (IWC) compared to families with other types of welfare contact (WC).
ApproachA whole-population linked administrative data study of children in South Australia born 1991-1995 (n=94,358), followed from birth up to age 20 years and their parent/s (n=143,814). The study used de-identified data from the Better Evidence Better Outcomes Linked Data (BEBOLD) platform including data from Australian Government Centrelink (welfare payments), birth registration, perinatal birth records, and child protection records. Children were classified as: No WC, parent only WC, child only WC, or IWC. Child protection contact prevalence, rates, and cumulative incidence were estimated by age, level of contact (reported notifications, screened-in reports, investigations, substantiations and out-of-home care), and WC group.
ResultsUsing Australian Government Centrelink data, WC was defined as parent/s receiving a means-tested welfare payment (low-income, unemployment, disability or caring) when children were aged 11-15, or children receiving payment at ages 16-20. IWC was WC occurring in both parent and child generations. Children who experienced IWC accounted for 84.7% of all CP notifications at ages 0-17 years and had the highest prevalence of CP contact (37.3%, n=12,286), compared to children experiencing parent only WC (16.1%), child only WC (11.6%), and no WC (4.7%). This trend was consistent across all levels of CP contact. Children who experienced IWC had higher notification rates at every age compared to all other WC types.
Conclusions and RelevanceChildren experiencing IWC represent a third of the population aged 11-20, yet account for 84.7% of all child protection notifications. Our study shows that children who experience IWC have higher personal (cumulative incidence and prevalence) and societal (notification rates) child protection costs than their counterfactual (parent only WC).
Challenges in public healthcare research data warehouse integration and operationalisation.
Authors: Ravipati Tanya , Andrew Nadine E , Srikanth Velandai , Beare Richard
Published: September 2022

ObjectivesPublic health service organisations use multiple patient administration and electronic health record systems. We describe the implementation of a data warehouse automation tool within the National Centre for Healthy Ageing (NCHA) data platform to operationalise a research data warehouse to optimise data quality and data provision for health services research.
ApproachThe traditional data warehouse life cycle comprises repetitive manual tasks and dependency on specialist developers. Automation tools overcome most of these inefficiencies. We conducted an internal risk benefit analysis which was validated by published literature containing data warehouse optimisation and automation. Industry-based data warehouse automation tools were reviewed to align the NCHA requirements with the tool’s functionality. Tools were then shortlisted and evaluated over a six-week period: (1) automation of standard tasks; (2) data pipeline alignment with the World Health Organization’s (WHO) Data Quality Review Framework; and (3) resource dependency risk mitigation through a Proof of Concept (PoC).
ResultsThe priority areas identified by the risk benefit analysis included: end-to-end data warehouse automation; auto scripting; connectivity/linkage with multiple sources, reverse/forward engineering, audit trail conformance, scalability, multiple data warehouse architectures support, automated documentation; data management including data quality; and post-subscription independence. Twenty scientific publications were included in the final literature review (10% within healthcare) and supported the majority of identified priority areas. The industry-based review identified 11 suitable data warehouse/Extract-Transform-Load (ETL) automation tools. Five tools demonstrated adequate performance for task automation, data quality management, reduced dependency on specialist developers and on-premise linkage compatibility. Two automation tools were tested each for 6 weeks through PoC development. One automation tool met 8 out of the 10 automation requirements and was selected for implementation.
ConclusionData warehouse development processes are complex and time consuming. Tools that offer automation of repetitive tasks and scripting increase the consistency while reducing the dependency on specialist staff.  Integrated data quality management minimises the time researchers spend in pre-processing patient level data sourced through a semi-automated data warehouse.
The Registry of Senior Australians: Informing Aged Care Policy Reforms.
Authors: Caughey Gillian , Ryan Olivia , Crotty Maria , Whitehead Craig , Hillier Susan , Evans Keith , Von Thien Marilyn , Mason Cassie , Radbone Chris , Mussared Jane , Ratcliffe Julie , Tideman Sally , Barker Anna , Sheppeard Anna , Miller Caroline , Pearson Odette , Corlis Megan , Candy Allen , Wesselingh Steve , Inacio Maria
Published: September 2022

ObjectivesTo: (1) outline the research produced using linked data from the Registry of Senior Australians (ROSA) which informed the recommendations from Australia’s Royal Commission into Aged Care Quality and Safety (delivered February 2021); (2) describe the Australian Government Aged Care Roadmap Reforms (announced May 2021) resulting from the recommendations.
ApproachROSA was established in 2017 and is led by a partnership of scientists, clinicians, aged care providers and consumer advocates from nine organisations seeking to improve the lives of Australians in aged care. ROSA is a Clinical Quality Registry comprised of linked national and cross-jurisdictional aged and health care data and includes a national historical de-identified cohort (3.5 million individuals, 2002-2020) and a prospectively enrolled cohort in the state of South Australia (26,600 individuals, 2018-current). This is a summary of ROSA’s high-quality evidence used by the Royal Commission and translation of this evidence into policy by leveraging existing data infrastructure.
ResultsBetween 2019-2020 the ROSA team led the delivery of four in-depth reports for the Royal Commission, contributed data and expertise to an additional four published Commission reports. Examples of ROSA outputs informing the Commissions’ recommendations included: evidence of national increased psychotropic medication use following entry to residential aged care, evidence of higher risk of mortality and entry to permanent care while waiting for home care packages, development of quality indicators to monitor quality and safety of care nationally, and to facilitate international comparisons and benchmarking. Examples of recommendations included in the Australian Government Aged Care Roadmap: release of substantial funding to increase the availability of home care packages, public reporting system for quality and safety monitoring and several changes to medication management.
ConclusionRegistries are key resources for high quality real-world evidence generation needed to inform national investigations, ultimately leading to significant sector reform. The ROSA experience highlights that cross-sectoral data linkages, together with technical expertise, informed by clinicians and consumers, are invaluable resources for system reform and policy generation.
Linkage of people experiencing homeless using two consent models.
Authors: Trubey Rob , Thomas Ian , Cannings-John Rebecca , Mackie Peter
Published: September 2022

ObjectivesAdministrative data linkage is relatively under-utilised as a way of generating evidence to guide homelessness policy and service delivery in the UK. Our objective is to contribute insight into the ethical, legal, and practical challenges of using data linkage with data from people experiencing homelessness (PEH).
ApproachWe outline the data collection and linkage methodologies for two UK-based studies related to PEH. The first design aimed to explore the acceptability and feasibility of consented linkage of trial data (‘Moving On’ trial) to NHS Digital records in a cohort of recruited PEH in two English local authorities (n=50). The second design used administrative data originating from a local authority homelessness service in Wales (n=17,000 cases) to explore educational outcomes of children in homeless households. The resultant data linkage rates are contrasted and discussed in relation to the mechanisms for obtaining and linking personal data.
ResultsThe Moving On trial demonstrated high rates of consent for data linkage and the ability to collect sufficient personal identifiable data to increase the chance of successful matching. Aggregate match rates will be discussed. Of the roughly 17,000 cases included in the local authority administrative data, 75% could be linked to unique individuals using probabilistic matching and were therefor ‘useable’ in linkage research. The proportion of useable cases rapidly decreased as the cut-off for matching quality was increased, to roughly 50% of cases being useable when a 99% match probability cut-off was used. Matching rates were higher amongst priority need homeless cases, possibly reflecting business need to identify and work closely with these people.
ConclusionWhere homelessness administrative data systems are not designed to enable data linkage, low matching rates can result, reducing study sample sizes and potentially leading to bias towards more extreme cases of homelessness if missed-matches are not random. Consented linkage within large-scale trials offers one possibility for generating long-term evidence.
Children and young people’s mental health in England, Scotland and Wales – case studies using linked data from the Networked Data Lab.
Authors: Peytrignet Sebastien , Grimm Fiona
Published: September 2022

ObjectivesThe Networked Data Lab is a UK-wide network of analytical teams embedded in the health and care system . In 2021-22, we used linked data to answer questions on children and young people’s (CYP) mental health – a key issue in the NHS agenda, due to the rising prevalence of these conditions among CYP and the difficulty in accessing services.
ApproachTo enable novel analyses, each of our five partners linked new data sources to existing routine health and care data, e.g. from the Mental Health Services Dataset (England), Welsh Ambulance Services Trust (Wales) and Child and Adolescent Mental Health Services (Scotland). After linking in these datasets to their data models, we followed a federated analysis approach where each partner answered questions that were specifically relevant to their local stakeholders. Our overarching theme was inequalities in access to services, with sub-analyses focussing on issues such as the role of the ambulance service in crises, the transition from children to adult services and drug prescription patterns among young people.
ResultsA previous NHS England survey showed that mental health conditions have become more common among of 6-16 year olds, rising from one in nine young people with a probable condition in 2017, to one in six in 2021. Synthesising findings from across our five partners, we will present new analysis into patterns of mental health service use and crisis care, including variation by demographic characteristics such as age, sex and socioeconomic deprivation. We will also present new findings on rejected referrals, the role of the ambulance service in crisis care and retention during the transition from CAMHS to adult services.
ConclusionsThis collaboration between five partners (each embedded in their local health systems as commissioners and researchers) showed that data linkages on children and young people’s mental health can provide unique insights that local service planners and national policymakers can act on.
Uptake of psychotropic medication amongst young adults known to social services in childhood: a longitudinal population-wide cohort study in Northern Ireland.
Authors: McKenna Sarah , Maguire Aideen , O'Reilly Dermot
Published: September 2022

ObjectiveTo determine the association between childhood involvement with social services and adult mental ill-health, using uptake of psychotropic medication as a proxy indicator.
ApproachThis longitudinal population-wide study linked primary care data on all children born 1985-1991 in Northern Ireland (n=179,484) to social services data (1985-2015) and psychotropic medication prescribing data (2010-2015). Multilevel logistic regression models explored psychotropic medication uptake (antidepressants, anxiolytics, hypnotics and antipsychotics) at ages 18-30 years given exposure to social services in childhood, clustered by GP practice. Additional analysis explored the sociodemographic characteristics and social care experiences (reason known, age at first involvement or entry to care, number of referrals or care episodes and care placement type) associated with medication uptake within social care subgroups.
ResultsOver 1 in 10 adults (10.3%) were known to social services in childhood (3.1% assessed as Not In Need, 5.8% Child In Need, 1.4% In Care). During follow-up 58.5% of care experienced adults were in receipt of psychotropic medication compared to 26.9% of peers never known to social services. Care experienced adults were three to six times more likely to be in receipt of medication (antidepressants OR=3.52, 95% CI 3.25-3.82; antipsychotics OR=6.09, 95% CI 5.37-6.90) than adults never known to social services. Adults deemed Not In Need in childhood (received no services) were at equivalent risk of psychotropic medication to those deemed In Need (received at-home care/support packages). Experiences before and during involvement with social services showed variable association with receipt of psychotropic medication in adulthood.
ConclusionAdults known to social services in childhood are more likely to receive psychotropic medication than peers never known, with number of referrals and placement type key predictors. Adults known as a Child in Need are equally as likely as those assessed as Not in Need, suggesting possible missed intervention opportunities.
Scottish Medical Imaging Service - Technical and Governance controls.
Authors: Caldwell Jackie , Wallace Robert , Morris Carole , Fleming Simon , Baxter Rob , MacLeod Ruairidh , Kerr William , Scobbie Donald , Rogers Simon , Ritchie Felix , Mansouri-Benssassi Esma , Krueger Susan , Jefferson Emily
Published: September 2022

ObjectivesThe Scottish Medical Imaging (SMI) service provides linkable, population based, “research-ready” real-world medical images for researchers to develop or validate AI algorithms within the Scottish National Safe Haven. The PICTURES research programme is developing novel methods to enhance the SMI service offering through research in cybersecurity and software/data/infrastructure engineering.
ApproachAdditional technical and governance controls were required to enable safe access to medical images.
The researcher is isolated from the rest of the trusted research environment (TRE) using a Project Private Zone (PPZ). This enables researchers to build and install their own software stack, and protects the TRE from malicious code.
Guidelines are under development for researchers on the safe development of algorithms and the expected relationship between the size of the model and the training dataset. There is associated work on the statistical disclosure control of models to enable safe release of trained models from the TRE.
ResultsA policy enabling the use of “Non-standard software” based on prior research, domain knowledge and experience gained from two contrasting research studies was developed.  Additional clauses have been added to the legal control – the eDRIS User Agreement – signed by each researcher and their Head of Department.  Penalties for attempting to import or use malware, remove data within models or any attempt to deceive or circumvent such controls are severe, and apply to both the individual and their institution. The process of building and deploying a PPZ has been developed allowing researchers to install their own software.
No attempt has yet been made to add additional ethical controls; however, a future service development could be validating the performance of researchers’ algorithms on our training dataset.
ConclusionThe availability to conduct research using images poses new challenges and risks for those commissioning and operating TREs. The Private Project Zone and our associated governance controls are a huge step towards supporting the needs of researchers in the 21st century.
Design and Creation of a Population-Wide Linkage Spine.
Authors: Ougrinovski Elena , Wilson Bronwyn
Published: September 2022

ObjectivesThis paper describes the creation of a comprehensive, linked Australian population spine including name and address history. This spine was developed using four national datasets and linked to multiple State and Territory datasets. This enabled the creation of linkage maps which could then be used to produce de-identified linked datasets.
ApproachInitially the spine was created using identifiers from Medicare Consumer Directory (MCD), Social Services data (DOMINO) and National Death Index (NDI). The COVID-19 vaccination program covering almost the entire Australian population provided the opportunity to add the Australian Immunisation Registry (AIR) .
Probabilistic linkage was used to link MCD and DOMINO with linkage rates of 97.3%.  MCD and NDI data were also linked probabilistically. Most AIR identifiers shared IDs with MCD and were linked deterministically with the remainder linked probabilistically.
ResultsBased on the linkage results, unique identifiers were created for everyone appearing in at least one of the four datasets. Only unlinked records with very incomplete information in NDI and AIR were excluded. All unique combinations of names and addresses for each individual were added to the combined spine. This allowed us to cover the data gaps of each dataset and create a comprehensive history not possible when using a single data source.
Linkage maps were created between all contributing data sources. State and Territory datasets were also linked to the spine using probabilistic linkage. These linkages were then reused for multiple projects.
ConclusionLinkage to the combined spine increased linkage efficiency (a “Link once, use everywhere” approach) as well as increased linkage accuracy and a reduction in the transfer of personal information to provide a better service to the Australian research community.
An analysis of Covid-19 deaths and equality in Northern Ireland.
Authors: Hughes John , Ijpelaar Jos , McAuley Rita , Shuttleworth Ian , Lowry Estelle , Lyness Deborah
Published: September 2022

ObjectivesThe overarching aim is to extend understanding of Covid-19 and non Covid-19 mortality during the pandemic. For the first two waves of the pandemic in Northern Ireland, the study addressed evidence gaps for both Covid-19 and non Covid-19 deaths in relation to equality group, health and socio-demographic characteristics.
ApproachPrior to this research, mortality analyses in Northern Ireland during the pandemic had been largely based on information recorded on death certificates and information gaps remained. This research linked death records to extensive socio-demographic, health and equality group information, retrieved from the 2011 Census, providing a more comprehensive assessment of mortality.
The research approach demonstrated innovative use of linked datasets in support of public policy. Findings also complement similar analysis published by the Office for National Statistics (ONS). Research questions were shaped and informed by information queries from a range of stakeholders including the Department of Health and elected officials.
ResultsResults published to date are based on Covid-19 and non Covid-19 deaths occurring in the 7-month period between 1st March 2020 and 30th September 2020. We found that there was a 48% and 40% higher risk for persons self-reporting having a disability at the time of the 2011 Census (compared to ‘non-disabled’ people) for Covid-19 and non Covid-19 mortality respectively.  After accounting for differences in age, sex and area of residence, there was no significant difference in risk of Covid-19 death, for the time period March to September 2020, for those who identified as Catholic at the time of the 2011 Census, compared to Protestants and other Christians.
ConclusionThe research addresses priority evidence gaps identified by government officials and third sector policy leads. The depth of commentary provided within the report is enabling researchers and policy makers to gain greater familiarity with a key research resource. This will be instrumental in shaping future research through ADR Northern Ireland.
Progress in building a longitudinal framework of linked reference data for England and Wales.
Authors: Loukas Kostas , Groom Paul
Published: September 2022

The Office for National Statistics (ONS) is working to transform its statistics, moving away from a system that is based on a ten-yearly Census and supporting surveys, to one that uses all available data to produce the highest quality statistics at any given time. This transformation requires that analysts be supplied with new data, new methods, and a new platform.
We are developing a longitudinal framework to structure and integrate administrative data; indexing data relating to people, business, location and classifications. The core reference data indexes aim to maximise the use and value of administrative data for statistical purposes within ONS where data standards, security and consistency are designed in from the start. Assigning index ID’s to data allows personally identifiable information to be removed without impacting the usability of the data. The framework enables analysis on data with links between people, businesses and locations.
The Demographic Index (DI) clusters together administrative records of a population entity (person) and assigns them a Unique ID. The administrative data sources are selected based on their quality and their population coverage. As there is no unique person identifier available across these sources both deterministic and probabilistic linking methods are used to build the index. The design of the index and how it is updated and maintained over time must meet ONS statistical research needs whilst also adhering to data warehousing standards and keeping personal information safe. The result is an anonymised database of longitudinally linked administrative data that is used in the production of population statistics and other statistical projects.
The creation of the DI has many challenges and further development will focus on how we measure and communicate quality to the users, investigating methods to reconcile attributes that are not align across sources and managing the linkage error as the DI is updated with more data.
Engaging im/migrant communities in cross-sectoral health and immigration data linkage research.
Authors: Lavergne Ruth , Carillo Ruth , Goldenberg Shira , Hagos Selamawit , Machado Stefanie , Peterson Sandra , Tayyar Elmira , Thakore Padmini , Sierra-Heredia Cecilia , Wanigaratne Susitha , Wiedmeyer Mei-Ling
Published: September 2022

ObjectivesWe aim to respond to health care barriers experienced by immigrant and migrant (im/migrant) communities through community-engaged research using population-based multi-sectoral linked health and immigration data, alongside qualitative methods. We describe lessons learned with respect to analytic choices and interpretation of findings from data linkage research.
ApproachWe linked Canadian federal immigration data and health data from the province of British Columbia to analyze access to health care services during the COVID-19 pandemic. Immigration data include date and class of arrival, level of education, language ability at arrival, countries of birth and origin, and other personal characteristics. Provinces also collect documentation of immigration status as part of ascertaining health insurance eligibility, data not previously used for research. Planning and carrying out this analysis involved people who come from different countries and have different immigration journeys, such as people with precarious im/migration status, refugees, workers and students.
ResultsFindings underscore that care should be taken in choosing categories to group people using administrative immigration systems data that are relevant to research questions, considering class of arrival, current status, time since arrival, and language ability, alongside intersecting characteristics. In studying COVID-19 infection and access to care, current status (temporary or permanent) was particularly important, as this is tied to both workplace protections/risks and access to care. Time since arrival in Canada and language ability were important in examining questions related to health system navigation, including access to virtual and in-person care. Immigration information recorded at time of registration for provincial insurance offers a new opportunity to include immigration data in analysis, and is particularly helpful in studying impacts of temporary status.
ConclusionA strength of linked immigration data is that it directly captures administrative categories that are modifiable and that structurally determine health. In interpreting analysis we must emphasize that immigration records and class captured at time of registration for health insurance reflect administratively imposed categories, but may not reflect identities.
Differences in end-of-life health service usage between people who died at home before and during the pandemic in Scotland.
Authors: Savinc Jan , Atherton Iain
Published: September 2022

ObjectivesTo compare health service usage of people who died at home in Scotland during the Covid-19 pandemic to the population who died at home prior to the pandemic, as a proxy measure of end-of-life care availability during the pandemic.
ApproachRetrospective observational study of linked routine data: death registrations of all adults who died aged 18+ in Scotland during 12-month pandemic period (2020-03-23 to 2021-03-22) and pre-pandemic period (5 years prior), linked to inpatient acute hospital, psychiatric, and cancer registration records, and unscheduled care records (NHS24, A&E, ambulance, and Out-of-hours GP records). Service usage will be summarised for pandemic and pre-pandemic cohorts.
ResultsDeaths at home increased by about 35% during the first year of the pandemic in Scotland. Health service usage before and during the pandemic will be compared, in particular, length of stay in hospital in the last year of life, to test the hypothesis that patients were discharged earlier to ease pressures on hospitals. Geographical differences in length of hospital stay will be presented in terms of NHS health boards, Urban-rural status and Scottish Index of Multiple Deprivation (SIMD).
ConclusionStudying the effects of the pandemic on end-of-life care has important implications for policy and future pandemic preparedness. These preliminary results are an early step towards understanding the effects of the pandemic and motivate further linkage of social care data as soon as they are made available.
Advancing multi-regional research in Canada through collaboration.
Authors: Yada Nicole , Schull Michael , McGrail Kimberlyn
Published: September 2022

ObjectivesCOVID-19 accentuated the importance of breaking down data siloes and aligning incentives for data access, collection, and use. Health Data Research Network Canada (HDRN Canada) is responding to this challenge, bringing together people and organizations to transform health data use in Canada.
ApproachHDRN Canada’s foundation is its partnership of 20 pan-Canadian, provincial and territorial data organizations that together are enabling multi-regional research. This is being enriched with HDRN Canada’s development of the Canada Health Data Research Alliance (HDR Alliance). The HDR Alliance coordinates expansion of sources and types of data available while retaining organizational independence. A project-based pilot approach is underway with two large pan-Canadian, longitudinal, consented cohort studies being linked at HDRN Canada sites. In addition, a collaboration with a pan-Canadian COVID19 clinical trials network is ensuring that clinical data are collected in ways that enables linkage with population-based administrative data.
ResultsHDRN Canada has created a single data access portal for researchers with information on over 500 datasets and supported 72 research projects to date. Work on the HDR Alliance adds data from the Canadian Partnership for Tomorrow’s Health and the Canadian Longitudinal Survey on Aging. The former includes 350,000 individuals, and survey data (including related to COVID-19), physical measures and genomics. The latter includes 50,000 individuals with survey data and physical measures. Four multi-region clinical trials are being planned with the support of HDRN Canada.  Even with aligned incentives, challenges navigating data governance and access processes remain. Collaborations are necessary to address these complexities and enable access to richer data in an efficient and timely matter.
ConclusionStrong partnerships are critical to unlocking the potential of Canada’s data assets and expertise. The HDR Alliance provides a collaboration mechanism to increase the “findability”, accessibility and utility of data assets, while addressing complex issues in the data landscape. This increases research opportunities and the impact of population-based, linkable data.
Mapping the use of patient reported outcomes at a health organisation to inform integration into hospital data systems.
Authors: Snowdon David , Srikanth Velandai , Marsh Lucy , Beare Richard , Parker Emily , Andrew Nadine
Published: September 2022

ObjectivesIncorporating patient reported outcomes into health data linkage research ensures that the patient’s perspective is considered. We aimed to understand the use of patient reported outcomes across an entire healthcare organisation, to inform routine collection and integration of patient reported outcomes into hospital data systems for clinical practice and research.
ApproachWe applied a mapping process consisting of 1) an audit of patient reported outcomes used in research projects and data registries, and 2) a survey of clinicians’ use of patient reported outcomes in their clinical practice from January 2015 to March 2021. Patient reported outcomes were then classified as ‘specific’ to a particular disease and/or conditions, or as a ‘generic’ measure that was applicable to a broader population. Patient reported outcomes were also mapped to the health domains they measured, using the World Health Organisation International Classification Framework. Data were described using frequency and proportion.
ResultsPatient reported outcomes were used by 22% of research projects (n=144/666), 68% of clinical registries (n=13/19), and 76% of clinical specialties in their clinical care (n=16/21). Of the projects, registries and specialties that used patient reported outcomes, disease specific outcomes were most commonly used: 83% for research projects n=130/144), 69% for clinical registries (n=9/13), and 75% for clinical specialties (n=12/16). Greater than 80% of research projects, clinical registries and clinical specialties measured health domains relating to both body impairments and participation in daily life activities. The most commonly used generic patient reported outcome for research, data registries and clinical practice was the European Quality of Life Five Dimension Five Level (EQ-5D-5L) (research projects n=31/144, 22%; data registries n=2/13, 15%; clinical specialties n=3/16, 19%).
ConclusionIn our setting, the EQ-5D-5L had broad applicability across a range of clinical specialties, collection systems and research studies, making it suitable for routine integration into health data systems with potential for linkage with other population data. Sufficient flexibility is required for the collection of population and disease specific measures.
Coronavirus vaccination coverage and timeliness among people experiencing homelessness in Wales, UK: A population-level analysis of linked healthcare and substance use services data.
Authors: Thomas Ian
Published: September 2022

ObjectivesPeople experiencing homelessness (PEH) have higher incidence of underlying health conditions that increase the risk of COVID-19 related complications. Achieving high vaccination coverage in a timely manner was therefore important for this group. We aimed to quantify the coverage and the timeliness of coronavirus vaccination among PEH in Wales.
ApproachAnalysis was conducted using a population spine of people ≥ 18 years old continuously resident in Wales, UK, between July 2020 and November 2021. Data from health and substance use services were used to flag people who had experienced homelessness. The percentage of people receiving at least one dose of the coronavirus vaccination between 2nd December 2020 and 30th November 2021 was derived and logistic regression used to estimate the effect of experiencing homelessness on the odds of vaccination. Cumulative incidence plots and Restricted Meant Survival Time analysis were used to examine the timeliness of vaccination by homelessness status.
ResultsThe proportion of people vaccinated by 30th November 2021 was roughly 26% points lower among PEH than ‘not-homeless’ people. Adjusted logistic regression found that people experiencing homelessness had lower odds of having received a first vaccine dose by 30th November 2021 (OR = 0.4, p < 0.01). Since the start of the mass vaccination programme in Wales in December 2020, PEH went unvaccinated for on average 90 days longer than the general ‘not-homeless’ population, and 55 days longer than an exact match ‘not-homeless’ group. Visual analysis of the cumulative incidence plots found that at all points during the mass vaccination programme in Wales, the probability of being vaccinated was lower for PEH than ‘not-homeless’ groups.
ConclusionPEH appear to have been under-engaged as part of the mass vaccination programme in Wales. This has led to lower overall vaccination rates and more time unvaccinated, potentially exposing PEH to greater risk of COVID-19 complications and mortality.
Evaluating a school-based intervention through routine local authority data and national school data: Challenges and opportunities.
Authors: Westlake David , Munnery Kim , Adara Linda , Meister Lena , Pallmann Philip , Petrou Stavros , White James , Lugg-Widger Fiona
Published: September 2022

ObjectivesThe Department for Education funded local authorities (LAs) in England to embed social workers into schools (SWIS) so that they can work more effectively with teachers, children and families. A two-arm cluster randomised-controlled trial is evaluating the effect of SWIS compared to schools without on referrals to Children’s Social Care.
ApproachLAs collate information about all children who are referred to Children’s Social Care within their authority. A case report form has been developed by the trial team to collect school-level information on child protection enquiries, referrals, child in need assessments and numbers of days children spent in state care. Cost data are also included for an economic evaluation. LAs return a completed dataset each quarter, reporting aggregate numbers by school and year group. Data on attendance and attainment will be requested separately from the National Pupil Database (NPD) in 2023.
ResultsQuarterly (n=6) data was supplied for 291 schools across 21 LAs. We will focus on this method of data collection and its challenges and opportunities. Relying on 21 external parties to provide all trial data in a timely manner brought risks to the collation of trial outcome data but has reduced the overall costs of data collection. LAs work with a number of different (and changing) IT systems, many of which are not compatible with each other. This, along with personnel changes in data teams, has led to delays. Receiving aggregate data limits the amount of quality control possible, therefore detailed guidance mitigated potential data input errors. Working with LAs to develop and refine these guidance materials at the outset paid dividends.
ConclusionUsing routine LA data is a novel cost-efficient approach to collecting trial outcome data at scale. However, the disjointed and varying data architecture that exists in LAs presents practical challenges. This means we relied on good working relationships with the LAs, including regular communication and collaborative problem solving.
Augmenting laboratory COVID serology data granularity for SARS-CoV-2 reporting.
Authors: Urwin Esmond , Harris Andy , Johnstone Jenny , Masood Erum , Chuter Antony , Ferguson Michael , Martin Joanne , Sebire Neil , Quinlan Philip , Jefferson Emily
Published: September 2022

ObjectiveThe global COVID pandemic has highlighted the need for the reporting of enhanced serology data from laboratory testing data. Qualitative results alone do not provide detailed data to understand levels of SARS-CoV-2 seroprevalence within a populace. To enable this, a minimum data set is required to support standardised data reporting.
ApproachThe CO-CONNECT project is concerned with the response to COVID within the UK and how datasets can be made Findable, Accessible, Interoperable and Reusable (FAIR). One aspect of this is a focus upon improving granular levels of COVID serology testing data being reported by national laboratories to the National Pathology Exchange (NPEx). A study was conducted to ascertain the essential data elements that could formulate a COVID Serology Data Standard (CSDS). Three NHS laboratories acting as pilot studies and NPEx have been actively involved with the development of the CSDS, together with clinicians and academics from the CO-CONNECT project.
ResultsFeedback from clinicians, academics and NPEx has been collected, together with NHS laboratory feasibility analysis to derive a minimum set of data elements that form a proposed data standard to standardise the reporting of laboratory COVID serology data for the UK. The proposed CSDS comprises twelve data elements in total, grouped into four main areas, (1) subject identifier and test date and time, (2) analyser types, test kits and samples, (3) qualitative results and (4) quantitative results. To further support the standardisation effort, a proposed Health Level Seven (HL7) message structure has been created to enable the reporting of the CSDS data elements to NPEx.
ConclusionThe CSDS has been created to help augment levels of reported granular data for laboratory COVID serology testing. If adopted, this could enable healthcare professionals to better understand the calibration of assays across multiple analyser types and thus antibody response levels.
Anti-asthmatic prescriptions in children with and without congenital anomalies: a European data linkage study.
Authors: Divin Natalie , Garne Ester , Morris Joan K , Loane Maria
Published: September 2022

ObjectivesAsthma is the most common chronic disease in childhood, yet little is known about rates of asthma and wheezing in children with congenital anomalies. This study explored the prevalence and risk of receiving anti-asthmatic prescriptions in children with congenital anomalies compared to children without anomalies in six European regions/countries.
ApproachThis was a EUROlinkCAT population-based linkage cohort study involving children from 0-9 years of age born between 2000-2014. Congenital anomaly data from six EUROCAT registries were linked to births data in national/vital statistics and to electronic prescription databases. Prescription/pharmacy dispensing records across regions were standardised to a Common Data Model. Anatomical Therapeutic Chemical classification codes beginning with R03 were used to identify anti-asthmatic prescriptions. Random-effects meta-analyses were performed to identify both the relative risk (RR) of receiving >1 anti-asthmatic prescription in a year relative to the reference group, and the heterogeneity of prevalence rates across registries and age group.
ResultsA total of 5.1% of children with congenital anomalies and 4.9% of reference children were dropped from the study as they were not linked. Children with congenital anomalies (n=60,662) had a higher prevalence of >1 anti-asthmatic prescription and a significantly higher risk of being prescribed anti-asthmatics (RR=1.41, 95% CI 1.35-1.48) compared to reference children (n=1,722,912). The increased risk was consistent across all age groups. Children with congenital anomalies were more likely to be prescribed beta-2 agonists (RR=1.71, 95% CI 1.60-1.83) and inhaled corticosteroids (RR=1.74, 95% CI 1.61-1.87). Children with oesophageal atresia, diaphragmatic hernia, genetic syndromes and chromosomal anomalies had over twice the risk of being prescribed anti-asthmatics compared to reference children. Regional differences in prevalence and risk of anti-asthmatic prescriptions were identified.
ConclusionChildren aged <10 years with congenital anomalies consistently had higher prevalence and risk of receiving >1 anti-asthmatic prescription across age group and across European regions. This study demonstrates that information on the prevalence of anti-asthmatic prescriptions issued/dispensed can be obtained through data linkage to monitor changes in prevalence over time.
Linkage of routinely-collected healthcare data and bespoke research questionnaire data to best serve NHS patient study participants.
Authors: McLaughlin Joanna , Judge Andrew
Published: September 2022

ObjectivesPre-surgical ‘health optimisation’ programmes aim to improve patients’ health and to reduce their need for surgery. Routinely-collected data does not provide sufficient insight into whether or how these programmes meet their intended outcomes. The aim was to link routinely-collected NHS data with bespoke research questionnaire data to address this insufficiency.
ApproachA study was designed to identify and collect data from a patient cohort eligible for a health optimisation programme (offering weight management and smoking cessation support) to determine programme uptake and patient outcomes. Patient and public involvement (PPI)  group engagement revealed support for the use of data linkage between routinely-collected NHS data and study questionnaires, and shaped the study proposal. The HDRUK-supported regional ‘Systemwide Dataset’ of NHS routinely-collected data would provide demographics, healthcare usage and clinical outcomes. Questionnaires would provide data on patient decision-making and engagement with weight management or smoking cessation and detailed pain, function, wellbeing and activation measures.
ResultsThe study received Health Research Authority approval and recruited six Participant Identification Centres. PPI co-production of the study’s participant-facing documents addressed the need for appropriate description of the novel data linkage process for potential participants. The data linkage design will offer an important advantage of a reduction in the participants’ time and recall accuracy needed in completing questionnaires due to the ability to omit duplicate demographic and healthcare usage fields. Further potential advantages include the ability to compare participants with patients who decline participation in the questionnaires, and long-term follow up of patient outcomes due to the continuation of routinely-collected data. Challenges have been faced in operationalizing the data collection and linkage processes due to decisions over data controllership of the combined dataset.
ConclusionLinkage between routinely-collected NHS data and bespoke research questionnaires was deemed ethically acceptable, and could offer significant advantages in combining demographics, healthcare usage, outcomes and experience data of a cohort. Systemic decision-making to specify and streamline acceptable processes for this data linkage are important next steps.
A Policy Impact Case Study Using Real World Data from Welsh Government Fuel Poverty Schemes to Inform Scheme Design.
Authors: Lowe Sarah , Morrison-Rees Sian
Published: September 2022

ObjectivesTo reduce fuel poverty in Wales: the Welsh Government developed schemes to provide energy efficiency improvements to lower income households.
To inform scheme design: investigate health impacts by linking scheme data to health records.
Presented objective: to demonstrate how research findings using real world data can impact policy focus.
ApproachThe research was conducted by an independent researcher at Swansea University who co-produced research questions with the Welsh Government Fuel Poverty Policy Team.
A longitudinal dataset was created by linking anonymised ‘Warm Homes: Nest’ improvements data to residents’ routine health records in the SAIL Databank at Swansea University. We examined recipient health before and after intervention compared with controls.
A high-level policy briefing and research report were published in the Welsh Government Social Research – Analysis for Policy series.
Findings were used to design and pilot new eligibility criteria to capture low-income individuals with a respiratory, circulatory or mental health condition.
ResultsThis presentation will describe the policy impact pathway from initial discussions with policymakers to real world change, including:

securing ESRC funding for a Knowledge Transfer Fellowship, which included a 2013 data linking demonstration project…
…which allowed funding to be secured for a 2015-18 research project focused on the impact of improvements on recipient health…
…which published emerging findings in 2016…
…and substantive findings in 2017, showing a significant positive impact of improvements on recipient health…
…which policymakers used to design a pilot to test ways to widen eligibility criteria to include individuals on a low income with a respiratory, circulatory or mental health condition…
…which led to scheme criteria being widened in 2019.

By 2021, 25% of recipients entered the scheme via the ‘health route’.
ConclusionBy delivering research findings generated using linked real world data, and focused on questions co-produced with policymakers, researchers can successfully impact the design and implementation of government policy, thereby improving the lives of people in the real world - in this case, the health of the citizens of Wales.