bluuebunny/crossref_metadata_2025_split huggingface dataset:
Cumulative incidence of chronic health conditions recorded in hospital admissions from birth to age 16 in England: a cohort study using linked hospital and education administrative data
Authors: Jay Matthew , Herlitz Lauren , Deighton Jessica , Gilbert Ruth , Blackburn Ruth 
Published: September 2024

ObjectiveMonitoring the incidence of chronic health conditions (CHCs) in childhood in England using administrative data to derive numerators and denominators is challenged by unmeasured migration. We used a birth cohort design and different criteria for contact with health or education services to estimate the cumulative incidence of CHCs to age 16 years.
ApproachWe identified all births in Hospital Episode Statistics (HES) from 2002/3 to 2011/12, with follow-up to 2018/19 (maximum age 8 to 16 years), censoring on death, first non-England residence record or 16th birthday. Children must have linked to later HES records and/or the National Pupil Database (NPD), which provides information on all state-school enrolments. The cumulative incidence of CHCs was estimated to age 16 using diagnostic codes in hospital admission records. We also explored temporal variation. Sensitivity analyses varied denominator criteria.
ResultsBetween 423,456 children (79.4%, of all HES-recorded births in 2002/3) and 618,054 (97.5% in 2011/12) linked to later HES or NPD records. The cumulative incidence of ever having a recorded CHC before age 16 among children born in 2002/3 or 2003/4 was 24.6%, ranging from 21% to 32% in sensitivity analyses. There was little temporal variation. At least 28% of children with any CHC had more than one body system affected by age 16. Multimorbidity rates rose with later cohorts.
ConclusionsApproximately one quarter of children are affected by CHCs, but varies depending on how the denominator is defined. More accurate estimation of the incidence of CHCs requires a dynamic population estimate.
A profile of the mental health needs of children in out-of-home care in Wales between 2019-2020
Authors: Cummings Aimee 
Published: September 2024

Objective and approachYoung people who have experience of being in out-of-home care are more likely to have poorer mental health when compared to those in the general population. However, some of the most highly cited literature around prevalence rates of different mental health conditions are becoming outdated. Data held in the Secure Anonymised Information Linkage (SAIL) Databank was used to better understand the mental health needs of this group. Health data from General Practitioner records, emergency department, and inpatient admissions were linked to the 2019/20 data from children’s social services.
ResultsMental health was considered in relation to two facets: indicators and conditions. Indicators included incidents of self-harm, drug or alcohol use, while conditions included symptoms or diagnoses of five different mental health conditions (anxiety, depression, eating disorder, conduct disorder, and severe mental illnesses). Prevalence was looked at across general demographic characteristics, as well as those specific to the care experience. Logistic regression models examined if a young person’s care experience could predict the likelihood of mental health need.
Conclusions The findings from this piece of work will inform current understanding of the vulnerabilities of this group. Future work will compare the needs of this group to others, including Children Receiving Care and Support, as well as the general population.
ImplicationsThis work will provide an update to existing literature. The findings have the potential to contribute to discussions about how we best support this group and will inform approaches to meeting the health needs of care-experienced young people.
Pilot Federated Analysis Projects
Authors: Thompson Simon 
Published: September 2024

The Cambrian explosion of Trusted Research Environments (TREs) will inevitably lead to increased data siloing and potentially decrease achievable data science. Federated access to data is a mitigation against this risk. The presentation will cover two major infrastructure demonstrator projects to address this need and start the UK journey towards interconnected TRE’s.
TELEPORT was an infrastructure to connect TREs and allow all the data assets to be seen through a single pane of glass while leaving them in situ; the analysis can be performed on each data asset, as well as combining data from multiple TREs to derive knowledge. The analysis is performed within the construct of a pop-up TRE, which is a temporary project-specific TRE. The data governance model is operated in an as-is state, with all egress controls being applied upon extraction of research output. This method has been termed Federated Data.
TREFX is a set of infrastructure based around international GA4GH standards and the RO-CRATE concept to provide a platform to send complex workflows to the TRE’s to be performed upon the data assets, with the output post egress checking to be re-packed into the inbound RO-CRATE prior to being returned to the researcher. This method addresses both federated analysis and method reproducibility. This project was extended to cover ADDI workloads for dementia.
Both solutions were jointly developed by Swansea University / SeRP and share common elements. Future work will see both these products being combined into a hybrid approach as well as spin-out products and services.
Leveraging Linked Ontario’s Health-administrative Data to Evaluate Internet-delivered Cognitive Behavioural Therapy (iCBT) in routine care
Authors: Gatov Evgenia (Jenny) , Wiljer David , Strudwick Gillian , Bhattacharyya Onil , Kurdyak Paul 
Published: September 2024

ObjectiveVirtual interventions show promise for meeting growing mental health (MH) service demands. In 2020, Ontario launched Internet-delivered Cognitive Behavioural Therapy (iCBT), an evidence-based, self-led, asynchronous intervention for anxiety and depression. While its efficacy has been demonstrated in randomized controlled trials, we examine its real-world reach and treatment completion in routine care.
ApproachLinking iCBT records with health-administrative databases, we examined the characteristics (clinical, sociodemographic, health service use) of individuals receiving iCBT (via a pilot program), compared to fully-synchronous CBT (standard of care), ascertained who is more likely to receive either modality, and determined factors associated with treatment completion using Logistic regressions adjusted for sociodemographics, baseline depression (PHQ-9) and anxiety (GAD-7), and outpatient and acute MH-related service use one year prior to enrollment.
ResultsAmong N=167 individuals receiving iCBT at the Centre for Addiction and Mental Health (Jan 2020-Aug 2021) and N=300 controls receiving fully-synchronous CBT via Ontario’s Structured Psychotherapy Program, we found that older individuals, those with lower baseline anxiety, and those with greater prior MH service use were more likely to receive iCBT. Intervention modality was the only significant predictor for treatment completion, with 51% lesser odds among iCBT clients (ORadjusted=0.49, 95%CI 0.31-0.76).
ConclusionsWhile certain demographic characteristics differentiate iCBT recipients from those receiving standard CBT, treatment adherence is lower in self-led, asynchronous therapy.
ImplicationsThis study examines iCBT in routine care and informs its wider implementation so it can reach the target population, ease access burdens, and improve MH service delivery. Future work will examine treatment effectiveness.
Navigating Indigenous Data Sovereignty: A Decolonizing Approach to Understanding Opioid Use Amongst First Nations in Manitoba
Authors: Phillips-Beck Wanda , Star Leona , Leggett Sidney 
Published: September 2024

First Nations (FN) and Indigenous Peoples around the world face significant challenges in navigating the complexities of Western research systems, particularly in the context of data sovereignty and research about their people and communities; the same can be said for Western researchers navigating Indigenous research space. We examine the intersection of Western research and FN data to explore opioid use amongst FN in Manitoba and highlight the ethical imperative of utilizing decolonizing frameworks when working with Indigenous data.
Indigenous researchers led a retrospective cohort study linking the Manitoba FN research file to population-level data held at the Manitoba Centre for Health Policy. We centred Indigenous voices, knowledge, protocols, and contextually informed interpretation and fostered meaningful partnerships with academic researchers to ensure we utilized robust statistical methods while prioritizing community-driven questions, needs, and aspirations.
Study period from 2015 to 2019 and included all Manitobans eligible for Manitoba Health Services. We found downward trends in opioid-related use, dispensation, hospitalization, and mortality rates for both FN and all other Manitobans (AOM), but a significant gap was found between FN and AOM for most indicators. Indigenous governance, ownership, engagement, collaboration, reciprocity, and respect for cultural and intellectual property rights are key concepts in ethical research practices that prioritize Indigenous self-determination and data sovereignty.
We underscore the transformative potential of Indigenous-led research and use of decolonizing frameworks in fostering community empowerment to address opioid use in First Nation communities. We upheld the rights of Indigenous peoples to govern their data and undertake their own research.
The European Union Settlement Scheme Data Linkage Project in Wales: Findings relating to mental health and education
Authors: Lloyd-Williams Ffion , Curds Matthew , Drinkwater Stephen 
Published: September 2024

Objective Following the UK’s exit from the European Union (EU) a settlement scheme was introduced for EU nationals currently living in the UK to apply to continue living in the UK. The European Union (EU) Settlement Scheme project compares the living experiences of EU and UK citizens in Wales.
ApproachWe conducted a retrospective population cohort study within the Secure Anonymised information Linkage (SAIL) Databank to explore the mental health, educational experiences and involvement in the Welsh labour market of EU citizens living in Wales in comparison to British citizens. UK Census data relating to country of birth, sex, week of birth, date of arrival in the UK and socio-economic status have been linked to variables of relevance in the Education for Wales and Welsh General Practice datasets respectively and analysed.
ResultsFindings indicate statistically significant differences in secondary school attendance and attainment between Welsh born pupils and pupils born in EU countries. We will present findings on our exploration if differences exist between Welsh born and EU country born individuals in relation to diagnosis of depression and anxiety. Additional findings from this linking and analysis reveal other interesting differences between EU and UK born citizens.
ConclusionsLinking data in this way has gained a better understanding of the experiences and outcomes of EU citizens in Wales, generating better evidence to inform policies and services that address the needs of this population and a dataset of interest to academics. Reproduceable analytical pipelines have been created for other researchers to use.
Linking Community-based Substance Use Disorder Treatment to Health Administrative Data: understanding vulnerable populations.
Authors: Kurdyak Paul , Crocker Matthew , Huang Anjie , Saunders Natasha 
Published: September 2024

IntroductionMost substance use disorder (SUD) treatment occurs in community settings. Community-based SUD treatment information is rarely captured or utilized. The objective of this study was to examine the efficiency of a data linkage of community-based SUD treatment to health administrative data holdings in Ontario, Canada, and to describe sociodemographic and clinical characteristics of individuals accessing SUD services.
MethodsData from community-based SUD service providers (>180) from April 2015 to March 2022 were linked to administrative data holdings at ICES. Linkage rates were evaluated. Sociodemographic (age, sex, neighbourhood-level income) and clinical (substance use, physician visits, Emergency Department (ED) visits and hospitalizations) characteristics were evaluated.
ResultsThe linkage rate of DATIS ICES data holdings was >92% for all years (2015-2022). Of the 234,501 individuals admitted to a DATIS program, 36.1% were female, 46.2% were 25-44 years old, and 51.6% resided in the two lowest neighbourhood income quintiles. Alcohol (33.4%) was the most common substance identified. For outpatient care occurring within 1 year prior to admission, around 56.0% and 23.3% had Mental Health and Addictions (MHA) related primary care and psychiatrist visits, respectively. For acute health services, 29.8% and 14.2% had a MHA- related ED visit or hospitalization, respectively.
DiscussionSUD treatment data from community settings can be successfully linked to other health administrative data. Individuals with SUD have a high rate of acute health care use, and a relatively low access to psychiatrists. SUD treatment data linkage should be used to understand how to optimize access to care for vulnerable individuals.
Exploring the Experiences of Children in Kinship Care in Scotland: A Sequence Analysis of Care Journeys, Characteristics and Outcomes
Authors: Soraghan Joanna , Porter Robert 
Published: September 2024

Objective and ApproachAn increasing proportion of children in care in Scotland are formally living with extended family or friends – known as kinship care. To gain an enhanced understanding of experiences within kinship care, sequence analysis methods were applied to determine distinct patterns in care journeys throughout their first 5 years in care. Through linkage to education and health data, associations between these distinct types of care journey and children’s characteristics and outcomes were assessed.
ResultsUsing a sample of 2987 children born between 2008 and 2014 who had experienced kinship care, we identified four ‘typical’ care journeys which best describe their experiences in terms of the type, number and duration of care placements. Our analysis found that children who entered care as infants were more likely to experience short-term kinship care, while those with a disability were more likely to spend extended periods in foster care than kinship care. Those living mainly in kinship care had poorer educational outcomes than those living mainly in foster care.
ConclusionsSequence analysis can provide a more holistic view of children’s experiences over time than annual ‘snapshot’ data. The approach enabled us to identify different types of care journey, the characteristics of children who may be likely to have these experiences, and what their outcomes may be.
ImplicationsThese findings have implications for the commissioning and design of support services for families who experience kinship care, and highlight the importance of consistent, long-term data collection to facilitate longitudinal analysis.
Engagement and Communication Challenges for a Complex, Multi-nation Research Project: AD|ARC (Administrative Data | Agricultural Research Collection)
Authors: Pryce Freya , Lowe Sarah , Morrison-Rees Sian , Madden Laura , Caskie Paul , Loftus Racheal 
Published: September 2024

The Administrative Data | Agricultural Research Collection (AD|ARC) is a complex research project involving four nations, a mixture of business-level, household-level and person-level data, and diverse partners, stakeholders and audiences. The project is creating independent but comparable Research Ready Datasets, using linked data for farm businesses, farmers and farm families in the four UK nations. The engagement and communications workstream is crucial to build trust, inform the programme of work, support and enhance scientific objectives, and deliver high-quality, relevant findings that meet stakeholder and funder expectations.
The project deployed a bespoke engagement and communications framework to meet these objectives. This presentation shares key elements of AD|ARC project's engagement and communications framework and strategy:

Multi-region Approach: Balancing the need for a harmonised, federated resource with respecting regional differences in data, trusted research environments, and stakeholder perspectives.
Transparency and Trust: Engaging diverse stakeholders, including farmers, researchers, and policymakers, to build trust, support and legitimacy.
Collaborative Decision-Making: Interacting with diverse partners, (data owners, researchers, research subject representatives) to refine research questions.
Outreach and Dissemination: A multi-method, iterative approach to raise awareness, share and promote the project.

Results are demonstrated by success in being selected as an ADR UK Flagship Dataset; integrating diverse perspectives into the creation of comparable Research Ready Datasets; consensus on a research programme; useful learning which is incorporated into strategy; and actionable evidence to inform policymaking.
The presentation will reflect on lessons learned, drawing out implications for research and public engagement that could apply to any complex research project.
Utilization of Outpatient Mental Health Services During and After The COVID-19 Pandemic
Authors: Hayek Michelle , Park Sulki , Lawley Mark , Bovin Michelle , Kum Hye-Chung 
Published: September 2024

Objective and ApproachThis study examines the impact of COVID-19 on outpatient mental health (OP-MH) service use and assesses the role of telehealth on OP-MH service patterns. Using the 5% national sample of Medicare beneficiaries, the intervention group was defined as those newly diagnosed with a MH condition in 2019 (no MH diagnosis 2 years prior) with a 2-year study period of 2020-2021. The comparison group included non-overlapping individuals newly diagnosed in 2017 with a study period of 2018-2019. The OP utilization patterns were examined over the 2 years post-diagnosis and compared across MH diagnostic categories, including schizophrenia, bipolar, depression, anxiety, trauma-related, and substance-use disorders.
ResultsThe intervention group observed a significant reduction in MH utilization in March-April 2020 compared to the matched sample. While patients with schizophrenia and bipolar disorders saw a return to normal patterns by May 2020, those with depression, anxiety, trauma-related, and substance-use disorders continued to exhibit significant reductions in MH utilization post-COVID-19. The intervention group demonstrated a significant increase in telehealth usage, transitioning from 1% pre-COVID-19 to a peak of ~60% during the pandemic. This trend gradually decreased, reaching an average of 30% by the end of 2021 across all conditions.
Conclusions and ImplicationsThis study underscores the impact of the pandemic on OP-MH utilization and emphasizes the potential of telehealth in improving access to care to meet OP-MH needs. Further, the results highlight the differences in OP-MH utilization across diagnostic categories and the relative benefit of telehealth options for these conditions.
Psychotropic medication profiles and future treatment risk among Northern Irish adults: a Latent Transition Analysis
Authors: McDowell Ron , Rosato Michael , Murphy Jamie , Leavey Gerry 
Published: September 2024

ObjectiveTo identify within the Northern Irish adult population distinct psychotropic prescription profiles at initiation/discontinuation of a ‘treatment episode’ and associated risk of future psychotropic treatment.
ApproachData linkage analysis of psychotropic prescriptions and household information. The ‘treatment episode’ was defined as the first identified period (>6 months) of psychotropic prescriptions preceded and followed by ≥ 12 months without psychotropics. Latent Transition Analysis was used to identify classes of psychotropic usage at initiation/discontinuation of treatment, with Cox regression used to estimate the likelihood of recommencing psychotropics.
ResultsWe identified 157,836 patients, median age forty-five years (IQR 32,62) , 58.7% female, median exposure 1.5 years (IQR 1,2.5). Five latent classes of patients were identified in relation to received prescriptions: hypnotics, anxiolytics, antipsychotics, antidepressants and multiple psychotropics. The percentage of patients in the antidepressant class increased between initiation and discontinuation (from 64.2% to 67.1%) while that in the multiple psychotropics class fell (from 7.2% to 5.4%). 43% of patients who started treatment with multiple psychotropics had switched to antidepressants at discontinuation. These patients were significantly less likely to restart treatment than those who continued to receive multiple psychotropics (Hazard Ratio 0.83, 95%CI 0.76, 0.89) after adjusting for age at discontinuation, year of entry, deprivation, sex and duration of previous treatment.
ConclusionsContinued receipt of multiple psychotropics is associated with an increased risk of future/ongoing treatment. This may reflect diagnostic uncertainly, complex disorder and discontinuation-associated side-effects.
ImplicationsResearchers and practitioners alike should consider the diagnostic, health and treatment implications of these findings.
General practitioners’ perspectives on data linkage in Australian general practice
Authors: Green Heidi , Beilby Justin , Flack Felicity , Adams Caroyln , Fabrianesi Belinda , Carolan Lucy , Brown Anthony , Nettel Aguirre Alberto , Braunack-Mayer Annette 
Published: September 2024

ObjectiveIn the rapidly evolving landscape of digital health, data sharing using primary health care records has gained prominence. Linking primary care data with other administrative health datasets has the potential to provide a whole-of-life perspective on the patient journey and improve health outcomes. This study aimed to gain insight into Australian General Practitioners' (GPs) perspectives on the use of general practice health records for research and data linkage.
ApproachThe study employed a mixed-methods approach. We conducted semi-structured interviews with GPs who had little experience of data sharing, focusing on understanding the challenges and opportunities that increased data sharing poses. We also conducted a three-round modified Delphi study with GPs with experience of and interest in research and data sharing to refine recommendations for data sharing using general practice data.
ResultsIn this paper we describe the findings from both arms of the study and compare their recommendations to contribute to a nuanced understanding of general practitioners’ views on data linkage and sharing in general practice.
Conclusions and ImplicationsBridging the knowledge gap between novices and expert practitioners, the findings will inform policies, practices, and initiatives to address the ethical, legal and social implications of data sharing in general practice settings in Australia.