bluuebunny/crossref_metadata_2025_split huggingface dataset:
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.
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.
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.
Using an Alternative Method to Estimate Overcount for Census 2021.
Authors: White Zoe , Hall Johanna , Xhaferaj Kristina 
Published: September 2022

ObjectivesThe project aimed to test an alternative method to estimate the number of duplicate responses in the 2021 England and Wales Census. The method utilises information from all census records instead of relying on samples. It requires less clerical review than the original inverse sampling method used for overcount estimation.
ApproachWe used the Splink implementation of Fellegi-Sunter to match the 2021 Census to itself. The resulting linked dataset was filtered to retain only the top scoring record pair for each unique census record, giving a final dataset of around 71.5 million record pairs. These pairs were divided by score into 13 homogeneous buckets. Random samples of 1000 pairs per bucket were clerically reviewed to determine whether each pair was a true duplicate or not. The clerical results were used to assign an estimated probability of being a duplicate to each bucket and hence to every census record within the bucket.
ResultsA dashboard was created which contained percentages of duplicates by region and ‘overcount group’ for the original and alternative methods. This enabled us to view the data side by side and create visualisations to aid analysis. The alternative method had higher average duplicate percentages in overcount groups for communal establishments and was also higher for 9 out of 10 regions in the armed forces overcount group. We found that both the original and alternative methods of overcount estimation followed the same pattern in terms of minimum and maximum duplicate percentages except for those in communal establishments where minimum and maximums were both higher than the original method. Additionally, the minimum was marginally higher for the student and armed forces overcount groups for the alternative method.
ConclusionOn initial comparison, estimated rates of duplication resulting from the different methods are comparable. We plan to conduct further analysis on the similarities and differences of the two methods, and research whether the new method could be applied to estimate the duplication rate in other large datasets including administrative data.
Sleep Medication Use by people with Cerebral Palsy: A Population Level Data Linkage Study.
Authors: Kent Lisa , McCavert Mary-Elaine , McConnell Karen , Perra Oliver , Maguire Aideen , Kerr Claire 
Published: September 2022

ObjectivesTo (1) compare proportions of the population dispensed sleep medication, and rate (dispensations/month) and amount (milligrams/month) of dispensed sleep medication, in individuals with and without cerebral palsy (CP); and (2) describe dispensation of sleep medication within CP and non-CP cohorts with respect to sociodemographic and clinical characteristics.
ApproachIndividuals aged 6 -36 years (aligning with those known to the Northern Ireland CP Register [NICPR]), registered with a general practitioner at 01-January-2018, were identified within the National Health Application and Infrastructure System. Sleep medications dispensed 01-January-2018 to 31-December-2019 were extracted from the Enhanced Prescribing Database. Analysis was limited to melatonin due to small counts in other medications. Routine healthcare data was sourced from the Honest Broker Service (HBS). NICPR clinical data (CP-type, Gross Motor Function Classification System (GMFCS), gestation and birthweight) were linked to routine healthcare data using the Health and Care Number by HBS. Descriptive statistics are presented.
ResultsComplete matching was achieved between NICPR and healthcare data using the HCN. Final cohorts consisted of 1,598 individuals with CP and 790,097 without CP. A greater proportion of those with CP were dispensed melatonin compared to those without CP (4.6% vs 1.0%). The CP cohort were also dispensed melatonin at a greater rate (median(IQR) CP 0.33(0.71) vs non-CP 0.25(0.54) dispensations/month) and in greater amounts (median(IQR) CP 30(74.7) vs non-CP 17.5(55.0) mg/month). Within the CP cohort, differences in melatonin dispensation were observed across sociodemographic groups (male 5.1% vs female 3.9%; children 8.2% vs young adults 2.2%; urban 6.5% vs rural 5.0%); deprived 5.1% vs affluent 4.2%). Clinical characteristics associated with greatest dispensation of melatonin were non-spastic CP (6.83%), GMFCS IV&V (5.29%), or extremely premature birth (6.85%).
ConclusionIndividuals with CP, particularly children, are more likely to be dispensed sleep medications compared to the general population. Awareness of this disparity could encourage further research on assessment and management of sleep in CP and facilitate discussions between healthcare providers and families on underlying causes of sleep problems.
Linkage of Routinely-Collected Maternity Data with a Cerebral Palsy Register: Comparison of baseline maternal characteristics in offspring with and without cerebral palsy.
Authors: Kent Lisa , Kerr Claire , McConnell Karen , Perra Oliver , Eastwood Kelly-Ann 
Published: September 2022

ObjectivesThis feasibility and hypothesis generating study aimed to compare maternal characteristics between pregnancies in which at least one infant received a diagnosis of CP (case pregnancies) and pregnancies in which all infants did not receive a diagnosis (control pregnancies).
ApproachData for individuals with cerebral palsy (CP) born between 1990 (commencement of Northern Ireland Maternity System (NIMATS)) and 2012 (latest fully validated birth year in Northern Ireland Cerebral Palsy Register (NICPR)) were transferred to the Honest Broker Service, who performed linkage to NIMATS. Offspring were primarily matched between NICPR and NIMATS using the unique Health and Care Number. Where this was unavailable in NIMATS, matching from offspring to mother-infant pairs was performed using surname, gender, date of birth and/or postcode. Chi-square tests were used to test for differences in maternal characteristics between case and control pregnancies.
ResultsCohorts consisted of 486 case and 266,260 control pregnancies. After missing values were removed, case pregnancies had a greater proportion of mothers under 25 years (case: 28.0% vs control: 23.1%, p<0.05), multiple births (7.8% vs 1.5%, p<0.001), nulliparous mothers (47.5% vs 41.1%, p<0.05), unplanned pregnancies (42.8% vs 34.4%, p<0.001), late booking appointments (14.0% vs 9.7%, p<0.01), hypertension during pregnancy (11.9% vs 8.5%, p<0.05), no recorded folic acid intake (46.7% vs 34.8% p<0.001), family history of congenital abnormality (33.3% vs 24.4%, p<0.001), medical problems with potential to affect labour (respiratory, cardiac, diabetes, other) (6.6% vs 3.9%, p=0.004). A non-significant trend was observed suggesting that case pregnancies had a higher proportion of mothers with BMI≥30kg/m2 (21.4% vs 13.2%, p=0.086).
ConclusionThis feasibility study has highlighted a range of potential maternal characteristics that may be associated with a diagnosis of cerebral palsy in offspring and mirrors findings from other studies. A future data extraction update and predictive model development is planned.
Linkage of Routinely-Collected Maternity Data with a Cerebral Palsy Register: Matching Success and Temporal Assessment of Data Quality and Maternal Characteristics.
Authors: Kent Lisa , Kerr Claire , McConnell Karen , Perra Oliver , Eastwood Kelly-Ann 
Published: September 2022

ObjectivesThis study aimed to 1) establish the success rate of matching offspring in the Northern Ireland Cerebral Palsy Register (NICPR) to mother-infant pairs within the Northern Ireland Maternity System (NIMATS); and explore changes in 2) quality of maternal data (NIMATS) and 3) maternal characteristics over the study period.
ApproachData for individuals with cerebral palsy (CP) born between 1990 (commencement of NIMATS) and 2012 (latest fully validated birth year in NICPR) were transferred to the Honest Broker Service, who performed data linkage. Offspring were primarily matched between NICPR and NIMATS using the unique Health and Care Number (HCN). Where this was unavailable in NIMATS, matching from offspring to mothers/pregnancies was performed using surname, gender, date of birth +/- postcode. Changes in completeness and quality of data and maternal characteristics were explored per year and visualised using histograms. All pre-processing and analyses were performed using R.
ResultsFrom 1263 included CP cases, 377(30%) were matched using HCN. A further 121(9%) were matched by secondary strategies. Substantial improvements in completeness of maternal data were observed over time (body mass index (46.2% to 97.7%); BP (44.8% to 95.3%); age 100% complete throughout). An apparent tendency to round systolic and diastolic blood pressure to the nearest ten was observed. This tendency decreased over time which potentially led to an overestimation of hypertension detected in earlier years. Characteristics of mothers also changed over the study duration, seen in increasing proportions with BMI≥30 kg/m2 (9.97% to 18.9%). Age of mothers also increased with decreasing proportions aged<25y (33.7% to 19.6%) and increasing proportions aged≥35y (9.7% to 20.4%). No change over time was observed in maternal blood pressure variables.
ConclusionMatching success was affected by incomplete NIMATS coverage in earlier years and lag time in CP diagnosis being confirmed by NICPR (typically beyond the age of 4 years). Over time, completeness and quality of maternal variables in NIMATS has improved meaning future studies using these linkages will be more reliable.
Impact of the COVID-19 pandemic on commencement of psychotropic medications in Northern Ireland: a population-wide, administrative data linkage study.
Authors: Kent Lisa , O'Reilly Dermot , Maguire Aideen 
Published: September 2022

ObjectivesThis study aimed to explore changes in commencement of psychotropic medications in first 20 months of the pandemic and associated restrictions in Northern Ireland (NI).
ApproachAntidepressant, anxiolytic, hypnotic and antipsychotic medications dispensed in all community pharmacies in NI (Jan-2012 to Oct-2021, Enhanced Prescribing Database) were linked to sociodemographic data (National Health Application and Infrastructure Services) for everyone alive and resident in NI aged ≥10years. Commencement of new medication was identified on a rolling monthly basis as a dispensation in a given month but not in the previous 24 months. Auto Regressive Integrated Moving Average (ARIMA) models were trained taking trends and seasonal effects into consideration. Monthly forecasts were compared to actual numbers, at population level and within sociodemographic groups (gender, age, rurality, living-alone, deprivation).
ResultsThere were consistent increased numbers of individuals commencing antipsychotic medications in the group aged ≥65years, with observed to expected ratio ranging from 1.12 to 2.1. Commencement of hypnotics was decreased throughout the study in individuals aged <18years (OER ranged from 0.28 to 0.70) but remained as expected for other sociodemographic groups. Across all sociodemographic groups, commencement of antidepressants decreased initially (Mar-May 2020 population-level OER ranged from 0.61 to 0.79) and in Jan 2021 (population-level OER 0.78) corresponding with stricter stay at home restrictions but resumed the expected trend outside of these periods. There were no obvious deviations from expected trends in commencement of anxiolytics.
ConclusionThere was a clear impact on older people with regards commencement of antipsychotic medications throughout the pandemic. Hypnotic commencement in children was lower than expected throughout the pandemic, which may reflect reduced need or reduced access to specialist paediatric services. (NHS-REC:20/YH/0254; Data sourced from the Honest Broker Service)