International Journal of Population Data Science最新文献

{"title":"Operationalising Governance and Technical Readiness for Federated Analytics: Findings from the PANORAMA Project.","authors":"Katherine O'Sulivan, Astrid Dahl, Katherine Bishop, Petros Kotsagiannidis, Kavya Baswana, Diane Pallister, Helen Duckworth, Alan Bagnall, Phil Waywell","doi":"10.23889/ijpds.v11i5.3475","DOIUrl":"https://doi.org/10.23889/ijpds.v11i5.3475","url":null,"abstract":"<p><p>The PANORAMA project, a DARE UK TREvolution Early Adopters Programme, explored whether three NHS Secure Data Environments (SDEs) in the North of England could establish the foundations for federated analytics through shared governance, operational alignment, and emerging technical tools. The project comprised three technical work packages examining (1) the use of the SATRE specification to support a federated information governance (IG) framework, (2) the technical feasibility of using 5Safes TES to support federated analytics, and (3) SACRO (Semi-Automated Checking of Research Outputs) to to federated output checking, with robust public and professional consultation. PANORAMA demonstrates that meaningful federation requires a combination of organisational, governance and technical readiness, none of which are yet fully mature. First, technical tools designed to support federation-such as federated analytics and semi-automated output-checking-remain in active development. Partners emphasised the need for solutions that are stable, end-to-end, and \"plug-and-play\" to minimise burden on TRE operations teams and researchers. Second, federated information governance requires substantial professional oversight, the establishment of a shared vocabulary, and clear specifications of tolerance and equivalence between organisations. Public views broadly supported federated research, but had concerns over data security - which should be considered across all aspects of federation. Finally, the project highlighted that operationalising cross-organisation ways of working-spanning IG teams, technical staff, and research support-requires sustained coordination, central oversight, and ongoing monitoring. Federation is therefore achievable but dependent on maturing technical tools, finding equivalence to establish shared governance processes, and embedding continuous joint operational assurance.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 5","pages":"3475"},"PeriodicalIF":2.2,"publicationDate":"2026-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13426703/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148653759","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Outcomes for life sentence prisoners in England and Wales following release from custody.","authors":"Tim McSweeney","doi":"10.23889/ijpds.v11i5.3655","DOIUrl":"https://doi.org/10.23889/ijpds.v11i5.3655","url":null,"abstract":"<p><p>People serving a life sentence in England and Wales must complete a minimum term in prison, set by the courts, before they can be considered for release by the Parole Board. Those 'lifers' recommended for release are subject to monitoring, restrictions, and supervision and serve this sentence for the rest of their lives. They can be returned to custody if they break their licence conditions. This independent research, funded by the Dawes Trust and undertaken in partnership with the Prison Reform Trust, uses de-identified, individual-level administrative records from the Data First Prisoner Custodial Journey Dataset to report on the extent and nature of post-release rates of recall, custodial reconviction, and serious further offending by 'lifers' and other prisoners released from custody in England and Wales between 2011 and 2021. These outcomes were assessed at one, two, three, five, and ten-year follow-up periods. It also identifies risk and protective factors associated with these outcomes for life sentence prisoners. These insights will be used to generate public benefits by informing a better understanding of how the implementation, development, and delivery of parole arrangements can shape post-release outcomes for 'lifers' and other prisoners.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 5","pages":"3655"},"PeriodicalIF":2.2,"publicationDate":"2026-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13426592/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654023","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Study of Redistributive Effects of Medical In-Kind Benefits in South Korea, Using Linked Survey and Administrative Data.","authors":"Jong Sung You, Subin Lee","doi":"10.23889/ijpds.v11i5.3636","DOIUrl":"https://doi.org/10.23889/ijpds.v11i5.3636","url":null,"abstract":"<p><p>Medical in-kind benefits significantly influence households' real disposable income and medical consumption capacity. However, traditional household survey data typically lack information on in-kind benefits. To directly measure the distribution of medical in-kind benefits and to accurately estimate their effects on the inequality of income and medical consumption, this study linked income distribution data from Statistics Korea's Survey of Household Finances and Living Conditions (SHFLC) with medical in-kind benefits administrative data sourced from the National Health Insurance Service (NHIS). While an 80 percent match rate was achieved at the individual level, only 53 percent of the SHFLC samples were perfectly matched at the household level, with imperfect matches more prevalent in larger households. Our preliminary analysis, based on reweighted perfectly matched samples, yielded several key findings: The medical in-kind benefits-including health insurance, long-term care, and social assistance-were highly progressively distributed by income, with average benefits being higher for low-income households and the elderly. Aggregately, benefits provided to the bottom income quintile were more than three times those provided to the top. The inclusion of these benefits reduced poverty rates based on adjusted disposable income by approximately 2 percentage points for the entire population and by about 10 percentage points for the elderly. These initial findings robustly demonstrate the significant redistributive power of medical in-kind benefits in mitigating poverty among vulnerable populations. To address potential selection bias from imperfect matching, we will conduct robustness checks using multiple imputation techniques for the missing data.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 5","pages":"3636"},"PeriodicalIF":2.2,"publicationDate":"2026-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13426565/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654229","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Output checking.","authors":"Andi Bär, Irene Kuin, Lona Verkooijen","doi":"10.23889/ijpds.v11i5.3500","DOIUrl":"https://doi.org/10.23889/ijpds.v11i5.3500","url":null,"abstract":"<p><p>Researchers who conduct research using CBS microdata must have their results to be published checked before they are released outside the secure CBS microdata environment. The output control process has increasingly come under pressure. The risk of errors has increased, because the process was largely manual, the number of datasets to be assessed has grown, and the datasets have become more complex. Moreover, the capacity for checks was limited. This article describes a new application that supports the submission, checking and secure release of results ('output') to be published. The new process places more responsibility on the researcher for correctly submitting the output. It is also more efficient and effective in its design. Through this application, the researcher gains immediate insight into compliance with the submission guidelines at the moment of submission, such as the correct file format, and the guidelines to prevent disclosure. For instance, it checks if numbers below 10 are present. There is also a check for encrypted records in the file. Values that have been encrypted within the CBS microdata environment, such as postal codes, must be decrypted before they can leave the CBS. These automated checks make the process more transparent for researchers, make the work of the CBS output controller easier, and reduce the chance of errors.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 5","pages":"3500"},"PeriodicalIF":2.2,"publicationDate":"2026-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13426591/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654245","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Integrating Data, Driving Solutions: The Minnesota Information Linking for Kids (Minn-LInK) Project.","authors":"Sydney Johnson, Michael Hoffmeister, Kristine Piescher","doi":"10.23889/ijpds.v11i5.3721","DOIUrl":"https://doi.org/10.23889/ijpds.v11i5.3721","url":null,"abstract":"<p><p>Child well-being is complex and spans multiple disciplines and systems. The involvement of children with multiple public service systems (e.g., child protection, juvenile justice, public health, education, children's mental health) necessitates better service coordination and integration to ensure comprehensive service provision and delivery and promote child well-being. Through partnerships with state agencies, the Minnesota Linking Information for Kids (Minn-LInK) project links administrative data from a variety of systems to create a resource for interdisciplinary research regarding vulnerable populations, often focusing on cross-system involved children and families experiencing poverty. Minn-LInK currently houses over 20 years of state-wide individual level administrative data from multiple Minnesota systems, including educational data, child protection and children's mental health records, data on the receipt of public services such as food assistance or childcare assistance, juvenile justice and adult criminal justice data, and records of incarcerated adults, including sentence and offense information. This presentation will demonstrate how the longitudinal scope of Minn-LInK data allows researchers to consider complex questions about programs and policies that change over time and creates opportunities for ongoing follow-up of large-scale evaluations. We will also outline our plans for future expansion to increase capacity for new research questions, additional users, and greater responsivity to the needs to public systems and practitioners.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 5","pages":"3721"},"PeriodicalIF":2.2,"publicationDate":"2026-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13426778/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654286","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Long Shadow of Trauma: Comparing the Prevalence and Risks of Chronic Health Conditions among orthopaedic and other injury types 1-5 Years Post-Injury Using Population-Level Data Linkage.","authors":"Asmare Gelaw, Belinda Gabbe, Christina Ekegren","doi":"10.23889/ijpds.v11i5.3473","DOIUrl":"https://doi.org/10.23889/ijpds.v11i5.3473","url":null,"abstract":"<p><strong>Background and objectives: </strong>Major trauma survivors experience a substantial long-term health burden, yet trajectories of chronic physical conditions across injury types remain poorly understood. This study used linked administrative datasets to determine (1) the prevalence of chronic conditions before injury, at injury, within one year, and one to five years postinjury; and (2) the risk of developing new chronic conditions one to five years after major trauma.</p><p><strong>Methods: </strong>We conducted a retrospective cohort study using linked records from the Victorian State Trauma Registry (VSTR), Victorian Admitted Episodes Dataset (VAED), Victorian Emergency Minimum Dataset (VEMD), and Victorian Registry of Births, Deaths and Marriages (BDM). Adults aged ≥18 years (N = 28,522) with major trauma between 2007-2016 who survived ≥1 year were included. Trauma was classified as orthopaedic injury, severe traumatic brain injury (s-TBI), spinal cord injury, or other trauma. Chronic conditions were identified from diagnostic codes, and cumulative prevalence and adjusted relative risks were estimated.</p><p><strong>Results: </strong>Overall, 69.3% developed at least one chronic condition within five years. Preinjury conditions were most common in s-TBI (19.3%) and least in other trauma (6.6%). New-onset conditions were highest in s-TBI (21.7%) and orthopaedic trauma (21.4%), most frequently arthritis, cancer, and cardiovascular disease. Adjusted analyses showed no significant difference in long-term risk between orthopaedic and other trauma groups.</p><p><strong>Conclusions: </strong>Chronic conditions are highly prevalent among trauma survivors. Linked population data highlight the need for long-term, integrated rehabilitation and chronic disease management after injury.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 5","pages":"3473"},"PeriodicalIF":2.2,"publicationDate":"2026-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13426545/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654289","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Palliative care at end-of-life for people with liver cancer: A 10 year population-based study in Australia.","authors":"Rebecca Mitchell, Shenghan Cai, Jacob George, Rose Boutros, Amany Zekry, Yvonne Zurynski","doi":"10.23889/ijpds.v11i5.3578","DOIUrl":"https://doi.org/10.23889/ijpds.v11i5.3578","url":null,"abstract":"<p><p>Palliative care is essential to manage symptoms and end-of-life (EOL) quality, yet its utilisation in liver cancer remains poorly understood. This study examined sociodemographic and clinical characteristics associated with palliative care admission in the last five years of life for people with a death from liver cancer. A population-based retrospective cohort study of adults (≥18 years) who died from liver cancer between 2013 and 2022 in New South Wales, Australia was conducted. Multivariable logistic regression identified factors associated with palliative care admissions using linked hospital, cancer registry, notifiable conditions, and mortality records. There were 3,565 deaths and 55.3% of people had at least one palliative care admission. Females (OR 1.25; 95%CI1.06-1.49), individuals with anxiety-related disorders (OR 1.63; 95%CI1.18-2.25), drug-related dependence (OR 1.81; 95%CI1.29-2.54), who lived in rural locations (OR 1.39; 95%CI1.18-1.64), who had metastatic cancer at diagnosis (OR 1.23; 95%CI1.01-1.50), who had ≥4 hospital admissions (OR 1.43; 95%CI1.08-1.90) or who died in hospital (OR 4.64; 95%CI4.64-6.52) had a higher likelihood of a palliative care admission compared to no palliative care admissions. People admitted to intensive care (OR 0.60; 95%CI0.47-0.75) or who had mechanical ventilation (OR 0.46; 95%CI0.29-0.74) in the last 12 months prior to EOL were less likely to have a palliative care admission. This is the first Australian study to examine palliative care use in liver cancer on a population-level. Findings support earlier integration of palliative care to reduce high-acuity interventions. These insights have implications for service delivery, equity, and policy in EOL care planning.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 5","pages":"3578"},"PeriodicalIF":2.2,"publicationDate":"2026-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13426645/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654359","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Accelerating AI-Driven Neuroimaging Research in Dementia.","authors":"Lewis Hotchkiss, Chloe Tulip, Emma Squires, Simon Thompson","doi":"10.23889/ijpds.v11i5.3568","DOIUrl":"https://doi.org/10.23889/ijpds.v11i5.3568","url":null,"abstract":"<p><p>Artificial intelligence (AI) is rapidly advancing neuroimaging research for earlier and more accurate detection of dementia, yet the complexity, size, and heterogeneity of neuroimaging data create substantial barriers to scalable analysis within secure environments. Neuroimaging datasets require specialised processing, harmonisation across cohorts, and significant computational capacity - challenges that exceed those associated with typical structured health data. To address these issues, the Dementias Platform UK (DPUK) has developed a comprehensive neuroimaging infrastructure within its Trusted Research Environment (TRE), enabling secure, efficient, and standardised access to large-scale imaging resources for AI-driven research. We implemented automated pipelines to convert raw scans into research-ready datasets, adopting the Brain Imaging Data Structure (BIDS) standard across more than 20 cohort and clinical datasets. Harmonised imaging-derived features were produced to support cross-study comparability, and a curated clinical imaging collection focused on dementia was created to facilitate targeted AI model development. All datasets and workflows are available through the DPUK Data Portal, which provides researchers with high-performance compute, scalable storage, and established neuroimaging and AI tools within a secure environment. The resulting harmonised imaging resource offers a rich platform for investigating neurodegenerative disease trajectories and developing generalisable AI models. In collaboration with Dementias Platform Australia, we are extending this work internationally by federating TREs and aligning imaging collections using shared harmonisation methods, enhancing data diversity while preserving governance and privacy standards. By integrating processing pipelines, standardisation tools, and advanced infrastructure, DPUK has enabled scalable, responsible, and high-quality AI research using population-scale neuroimaging data.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 5","pages":"3568"},"PeriodicalIF":2.2,"publicationDate":"2026-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13426816/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654372","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Investigating Biases in Seniors' Drug Data Coverage in Canada.","authors":"Samuel A Stewart, Jeanyoung Park, Maia von Maltzahn, Emily Black, Jennifer E Isenor, Ingrid Sketris, Shanna Trenaman","doi":"10.23889/ijpds.v11i5.3631","DOIUrl":"https://doi.org/10.23889/ijpds.v11i5.3631","url":null,"abstract":"<p><strong>Background: </strong>While no province in Canada covers the cost of prescriptions for all of its residents, all have some form of provincial supplementary coverage (PSC) to cover some costs for particular subgroups (based on age, economics, and/or diagnosis). This PSC data can provide insights into the drug dispensation patterns of the population, but they often have significant biases that are often ignored in the literature.</p><p><strong>Objectives: </strong>The objective of this research is to explore the differences between Drug Information System (DIS) and PSC data in the province of Nova Scotia (NS). METHODS: Demographic data on all eligible Nova Scotians, and their prescriptions in both the DIS and NSSPP, were extracted from August 2016-December 2024. Residents were classified as recipients, non-recipients, and non-consumers, and their demographics and prescription patterns were explored.</p><p><strong>Results: </strong>There were over 342 000 residents eligible for NSSPP during the study window. Over 61 million prescriptions for these individuals were dispensed across the two databases, 38 million of which were paid for by NSSPP (63%). NSSPP paid for prescriptions for 58% of the population, though very few citizens had their prescriptions exclusively paid for by NSSPP (8.2%). Those that didn't receive prescriptions through NSSPP tended to be younger and more female.</p><p><strong>Conclusions: </strong>The data from NS show a clear potential for biases in using PSC data as a representative sample of seniors, with biases based on both age and gender. Future research will explore how potential patient disease patterns may influence coverage within the system.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 5","pages":"3631"},"PeriodicalIF":2.2,"publicationDate":"2026-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13426606/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654375","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Unplanned health service use among people living with cancer and mental health conditions: A retrospective matched case-comparison study in Australia.","authors":"Ramya Walsan, Rebecca Mitchell, Reema Harrison","doi":"10.23889/ijpds.v11i5.3513","DOIUrl":"https://doi.org/10.23889/ijpds.v11i5.3513","url":null,"abstract":"<p><p>People living with mental health conditions experience persistent inequities across the cancer pathway, yet their patterns of unplanned service use remain poorly described. This study examined predictors of unplanned health service use among people with cancer, with and without mental health comorbidities, in Australia. A retrospective matched case-comparison study using data from three Australian states, linking non-admitted patient (NAP) oncology records to cancer registry, hospital admission, emergency department (ED) presentation, outpatient mental health, and mortality data. Adults aged ≥18 years living with cancer who had NAP oncology encounter between 2018-2021 were included. Individuals with mental health conditions were matched 1:1 to those without a mental health diagnosis using propensity scores. Negative binomial regression, adjusted for sociodemographic and clinical factors, examined unplanned ED presentations or hospitalisations within 12 months. Of 99,230 people living with cancer, 10,442 (10.5%) had a recorded mental health condition. After matching, individuals with mental health conditions had a 36% higher risk of unplanned ED use (IRR 95% CI 1.32-1.41), 31% higher risk of unplanned hospitalisations (IRR 95% CI 1.26-1.36) and 46% higher risk of cancer-related hospitalisations (IRR 95% CI 1.39-1.53) compared to those without. Virtual care use, digestive and lung cancers (vs breast) and physical comorbidities were also associated with increased unplanned use. Substantial inequities in unplanned acute care exist for people with cancer and mental health conditions. Strengthening integration between oncology and mental health services and refining virtual care delivery may reduce avoidable acute care use and support more equitable outcomes.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"11 5","pages":"3513"},"PeriodicalIF":2.2,"publicationDate":"2026-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13426559/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148654384","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}