bluuebunny/crossref_metadata_2025_split huggingface dataset:
Costs of missed work among employed people with inflammatory bowel disease: a cross-sectional population-representative study.
Authors: Kuenzig Ellen , Lebenbaum Michael , Mason Joyce , Vyas Manav , Kaplan Gilaad , Murthy Sanjay , Targownik Laura , Benchimol Eric 
Published: September 2022

ObjectivesInflammatory bowel disease (IBD) is a chronic inflammatory disease primarily affecting the gastrointestinal tract. Periods of relapsing and remitting abdominal pain and diarrhea result in decreased quality of life. We report the impact of IBD on missed work and associated costs using population-representative data to understand population-level indirect costs.
ApproachWe used the 2014 Canadian Community Health Survey to compare missed work and associated costs among employed respondents aged 20 to 64 years with and without self-reported physician-diagnosed IBD. Students and individuals with non-IBD bowel disorders were excluded. Costs of missed work were derived from reported annual income and the number of workdays missed. Survey weights were used for descriptive statistics. Logistic regression compared odds of employment. Negative binomial models compared the number of days missed and the cost of lost work in the two groups. All costs are in Canadian dollars and adjusted for inflation to 2022 dollars.
ResultsAmong 33,344 eligible respondents, 1.0% had IBD. Employment in the last 3 months was reported among 72% of people with IBD and 81% of people without IBD (OR: 0.60, 95% CI 0.59-0.74). During this time, 48% of people with IBD and 31% of those without IBD missed work with a mean (sd) of 1.99 (5.17) and 1.03 (3.67) days of work missed, respectively (RR for days missed: 2.19, 95% CI 1.63-3.03). This corresponds to a cost of $608 (1635) among individuals with IBD and $298 (1063) among those without IBD every 3 months (RR: 2.18, 95% CI 1.22-4.43). Extrapolating to the estimated 133,030 employed Canadians with IBD, the attributable indirect cost of missed work due to IBD is nearly $165 million annually.
ConclusionThe economic burden of IBD resulting from missed work is substantial. Since IBD is most often diagnosed during adolescence and early adulthood, employability and workplace productivity are important long-term outcomes for patients. Future interventions should be developed to help address these challenges.
Ethnic differences in COVID-19 mortality in the second and third waves of the pandemic in England during the vaccine roll-out.
Authors: Bosworth Matt , Nafilyan Vahé 
Published: September 2022

ObjectivesThis study aims to assess whether ethnic differences in COVID-19 mortality in England have continued into the third wave and to what extent differences in vaccination rates contributed to excess COVID-19 mortality after accounting for other risk factors.
ApproachThis Cohort study of 28.8 million adults living in private households or communal establishments in England is based on data from the Office for National Statistics (ONS) Public Health Data Asset (PHDA). The ONS PHDA is a linked dataset combining the 2011 Census, mortality records, the General Practice Extraction Service (GPES) Data for Pandemic Planning and Research (GDPPR), Hospital Episode Statistics (HES) and vaccination data from the National Immunisation Management System (NIMS). We calculated hazard ratios (HRs) for death involving COVID-19 during the second (8 December 2020 to 12 June 2021) and third wave (13 June 2021 to 1 December 2021) of the pandemic separately for males to females to assess the association between ethnic group and death involving COVID-19 in each wave, sequentially adjusting for age, residence type, geographical factors, sociodemographic characteristics, pre-pandemic health, and vaccination status.
ResultsAge-adjusted HRs of death involving COVID-19 were higher for most ethnic minority groups than the White British group during both waves, particularly for groups with lowest vaccination rates (Bangladeshi, Pakistani, Black African and Black Caribbean). In both waves, HRs were attenuated after adjusting for geographical factors, sociodemographic characteristics, and pre-pandemic health. Further adjusting for vaccination status substantially reduced residual HRs for Black African, Black Caribbean, and Pakistani groups in the third wave. The only groups where fully-adjusted HRs remained elevated were the Bangladeshi group (men: 2.19, 95% CI 1.72 to 2.78; women: 2.12, 95% CI 1.58 to 2.86) and men from the Pakistani group (1.24, 95% CI 1.06 to 1.46).
ConclusionPublic health strategies to increase vaccination uptake in ethnic minority groups could reduce disparities in COVID-19 mortality that cannot be accounted for by pre-existing risk factors.
Predicting Surgical Service Demands: A Modeling challenge using Administrative Data.
Authors: Katz Alan , Taylor Carole , Okechukwu Ekuma , Soodeen Ruth-Ann 
Published: September 2022

ObjectivePublicly funded healthcare delivery systems use projections to ensure the availability of adequate future service delivery. Planning cycles need to consider infrastructure, human resources, and other essential requirements with an adequate lead time. Projections are fraught with challenges due to multiple unknowns but new developments in modeling may be useful.
ApproachWe explored the available data to determine the best approach to modeling surgical demand. The Manitoba Population Research Data Repository includes 90+ databases linkable at the person level over time. These include the population registry which includes all Manitobans registered for the universal healthcare benefit. Hospital discharge abstracts include over 20 relevant diagnoses (ICD10) and procedure codes for each admission. Medical services claims include all physician services provides with ICD 9CM codes. Fee-for-service physicians are paid based on these and alternate funded physicians are required to submit shadow claims.
ResultsWe found 349,171 orthopedic procedures of which 18.1% were absent from the Medical claims files and 551,508 medical claims of which 27.5% lacked a corresponding hospital abstract. We also identified 230,717 ophthalmologic procedures in the hospital data of which 2.5% had no corresponding medical claim; of the 648,826 medical claims 66.2% had no matching hospital abstract. Resource requirements of procedures are reflected in the number and complexity of each procedure performed. Historical changes over time reflect changing demand (population growth and aging) balanced by available resources. Available resources cannot be predicted via modelling. The best fit based on the validation dataset was a Seasonal Autoregressive Integrated Moving Average model with a Mean Absolute Percentage Error (MAPE) of 5.327%. which translates to 94.7% accuracy.
ConclusionDespite the limitations of modeling based on past behavior, we were able to predict surgical demand with 95% accuracy. These projections are valid partly due to the persistence of historical constraints through the validation period. Policies that address these service provision limitations would precipitate a need to adjust the model.
Mental health, firearm ownership, and risk of death by suicide: a population-wide data linkage study.
Authors: Ross Emma , O'Reilly Dermot , Maguire Aideen 
Published: September 2022

ObjectivesThere is clear evidence from the USA that access to firearms increases suicide risk, but little equivalent evidence exists in the UK. The aim of the current study is to examine the risk of suicide and all-cause mortality for people in Northern Ireland (NI) who hold a licenced firearm.
ApproachWe link information on all registrations from the Firearms Certificate (FAC) Register between 2010-2020 to the health service population spine for NI residents born before 1st January 2005. Further linkage includes prescription medication data and death records with follow-up until 31st December 2020.
Results68,831 individuals held a FAC during the study period. FAC holders were more likely to be older, to reside in rural areas (OR 4.99, 4.89-7.83), and to come from more affluent areas (ORmost deprived 0.46, 0.43-0.50). During follow-up, 3,704 FAC holders died. 36 deaths were due to suicide, of which 16 were suicides by firearm. Only 23% of those who died by firearm suicide in NI were FAC holders. Preliminary findings indicate that after adjustment for age, area-level deprivation, and urbanicity, FAC holders had a lower risk of all-cause mortality (HR 0.64, 0.61-0.66) and death by suicide (HR 0.54, 0.39-0.76).
ConclusionIn contrast to findings from previous studies, individuals with a licensed firearm were less likely to die by suicide.
AcknowledgementThe authors would like to acknowledge the help provided by the staff of the Honest Broker Service (HBS) within the Business Services Organisation Northern Ireland (BSO). The HBS is funded by the BSO and the Department of Health (DoH). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the BSO.
Disparities in adherence to diabetes screening guidelines among males and females in a universal care setting: A population-based study of 1,389,697 adults.
Authors: Kaul Padma , Chu Luan Mahn , Dover Douglas , Yeung Roseanne O. , Eurich Dean T , Butalia Sonia 
Published: September 2022

ObjectivesNational guidelines recommend that all adults over the age of 40 years undergo screening for diabetes at least once every 3-years. We examined the association between sex and adherence to diabetes screening after accounting for age, urban/rural residence and material deprivation. We also examined the subsequent incidence of prediabetes and diabetes in adherent and non-adherent individuals.
ApproachOur study is based on a retrospective population-level inception cohort of adults aged 40 - 79 years without pre-existing diabetes or cardiovascular disease on April 1, 2013. Data on hospitalizations, emergency department visits, ambulatory clinic visits, physician billing claims, pharmaceutical claims, centralized laboratory data, vital statistics death registry, and census data at the neighbourhood level were linked at the patient level for years 2013 to 2020. Adherence during a 3-year screening period (2013 – 2016) and prediabetes and diabetes during a 4-year follow-up period were examined. Multivariate logistic regression was used to examine the adjusted association between sex and adherence.
ResultsAmong 1,389,697 individuals (49.2% male, 50.8% female) adherence rates were 69.9% in males and 79.8% in females. Sex-differences in adherence were largest in younger individuals (58.0% and 72.6% and in males and females aged 40-44 years, respectively) and consistent across rural/urban residence and material deprivation categories. Females were more adherent (adjusted odds ratio 1.93; 95% confidence interval 1.90 to 1.97) than males. Among adherent males and females, 65.3% and 64.8% had at least one Haemoglobin A1C, respectively during the screening period. During the follow-up period, prediabetes and diabetes rates among males who were adherent were 25.9% and 5.2%, compared to 8.8% and 2.1% among non-adherent males; and 20.2% and 2.9% among adherent and 7.3% and 1.3% among non-adherent females.
ConclusionsDespite lower rates of adherence to screening, males have higher rates of prediabetes and diabetes compared to females. Our study highlights the need to develop education campaigns and targeted interventions at the local and population level to raise awareness and improve diabetes screening rates in young people, especially males.
Considerations and Consequences when using First Nations Identifiers in Administrative Data Research.
Authors: Durksen Anita , Phillips-Beck Wanda , Sarkar Joykrishna , Quddus Farzana , Enns Jennifer , Chartier Mariette , Nickel Nathan , Brownell Marni 
Published: September 2022

ObjectivesLack of consistent and relevant Indigenous identifiers in Canadian data sources leads to misclassification and under-recognition of the health and social issues impacting Indigenous Peoples, further perpetuating the harms of colonization. We are evaluating and optimizing our approach for identifying First Nations (FN) individuals in administrative data in Manitoba.
MethodsIn partnership between the First Nations Health and Social Secretariat of Manitoba and the Manitoba Centre for Health Policy, we sought to evaluate to what extent four distinct Manitoba datasets derived from surveillance and social programs were able to identify FN individuals among a cohort of children in low-income Winnipeg neighbourhoods between 2005-2016. In choosing data sources to identify FNs, the population and research question were considered.
We then compared the number of FNs identified in each dataset to the First Nations population research file, considered gold standard, but cognizant of its roots in colonial systems of registration.
ResultsThe total cohort comprised N=78,864; among these, n=27,347 children were identified as FN in either the FN registry or at least one of the datasets. The FN registry was the most sensitive dataset and identified 85.7% of these individuals. The two program datasets identified 58.2% and 46.2%, and the surveillance-based datasets each identified less than 10%.
The First Nations Registry is critical to accurately identify FN individuals. Our analyses demonstrated that without it we would miss 23.5% of those identified as FN in at least one other dataset. However, using it alone could potentially cause us to miss 15% of FN individuals identified in other datasets.
The proportions of FN individuals that would be missed by excluding any of the other datasets were smaller (<6%).
ConclusionWe found inconsistent FN identification across the datasets evaluated. Among the issues is that some datasets rely on self-identification. In Manitoba, no single administrative dataset can reliably and comprehensively identify FN individuals, and linking multiple datasets together is currently our best approach.
Is PAX-Good Behaviour Game (PAX) Associated with Better Mental Health and Educational Outcomes for First Nations Children?
Authors: Chartier Mariette , Munro Garry , Jiang Depeng , McCulloch Scott , Au Wendy , Brownell Marni , Santos Rob , Turner Frank , Boyd Leanne , Murdock Nora , Bolton James , Sareen Jitender 
Published: September 2022

ObjectivesPAX, a mental health promotion approach, has been shown to decrease negative mental health outcomes and improve academic achievement. These effects have yet to be shown among Indigenous children. We evaluated PAX for improving First Nations children’s outcomes following a research process wherein community members and researchers work more collaboratively.
ApproachBuilding on a long-term relationship with Swampy Cree Tribal Council, community members, First Nations leaders and researchers worked together through all phases of the project. This cluster randomized controlled trial used population-based health, social services, and education administrative data that allowed de-identified individual-level linkages across all databases through a scrambled health number. Our cohort of 725 children from 20 First Nations schools were randomized to PAX (n=469, 11 schools) or wait-list control (n=256, 9 schools). We used propensity score weighting and multi-level modeling to estimate the differences over time (2011 up to 2020) between children exposed to PAX and those who were not.
ResultsDifferences in baseline characteristics were found between the two groups of children, despite the cluster randomization. After applying propensity score weights, children in the PAX group had significantly greater decreases in conduct problems (β:-1.08, standard error(se):0.2505, p<.0001), hyperactivity (β:-1.13, se:0.3617, p=.0018 ), and peer problems (β:-1.10, se:0.3043, p=.0003) and a greater increase in prosocial scores (β:2.68, se:0.4139, p<.0001) than control group children. The percentage of children in the PAX group who met academic expectations was higher than those in the control group, however, only grade 3 numeracy (odds ratio (OR):4.30, confidence interval (CI):1.34 – 13.77) and grade 8 reading and writing (OR:2.78, CI:1.01 – 7.67) met statistical significance. We found no evidence that PAX was associated with less emotional problems, diagnosed mental disorders or better student engagement.
ConclusionThese findings suggest that PAX was effective in improving First Nations children’s mental health and academic outcomes in First Nations communities. Examining what works in Indigenous communities is crucial because approaches that are effective in some populations may not necessarily be culturally appropriate for remote Indigenous communities.
Establishing an ethics and governance framework for access to and linkage of electronic health data for research projects.
Authors: Parker Emily , Ravipati Tanya , Beare Richard , Srikanth Velandai , Andrew Nadine 
Published: September 2022

ObjectivesTo develop an ethics and governance framework for the National Centre for Healthy Ageing (NCHA) data platform that supports: streamlined access to data for research; transfer of data into secure data environments; linkage with a range of external data sources and incorporation of a variety of data types.
ApproachThe NCHA data platform is bringing together Electronic Health Data across an entire region for health service and clinical research. Methods used to establish the framework include: review of existing national (Australian Institute of Health and Welfare’s data governance framework) and international (Guiding principles from ISO/IEC 385051:2017) frameworks, stakeholder engagement and early piloting through use cases. End-users and executive staff (clinical, research and legal) were consulted to ensure compliance and streamlining with existing processes. A data access governance committee was formed with expertise in data access, linkage of large health data sets, ethics, health data privacy and legal policy.
ResultsData governance frameworks and policies from established state registries, large clinical trials and health data sharing and linkage centres (n=7) were reviewed and a summary was presented to the committee. An existing data access and sharing agreement and principles was chosen as a template based on existing stakeholder collaborations and relevance to the two NCHA institutes (Monash University and Peninsula Health). The draft agreement and principles were modified and piloted for data access use cases (n=6). Feedback from researchers (n=3) was used to refine the framework. The committee identified that additional frameworks, such as those outlined by the Centre for Victorian Data Linkages, will be required to accommodate future data sharing and linkage activities with industry and government.
ConclusionOur work highlighted the importance of developing a robust governance framework with the ability to incorporate a range of data, that was acceptable to end-users and had sufficient flexibility to incorporate future yet to be identified data types. Ongoing work will expand the framework to include additional data linkage activities.
Linking Databases in Collaborative and Culturally Safe Ways to Evaluate the Effectiveness of PAX-Good Behaviour Game (PAX) in First Nations Communities.
Authors: Chartier Mariette , Munro Garry , Murdock Nora , Turner Frank , Boyd Leanne , Katz Laurence , Brownell Marni , Jiang Depeng , Martinson Amanda , Fortier Janique , Sareen Jitender 
Published: September 2022

ObjectivesThe overarching research objective was to examine, culturally adapt, and further evaluate a mental health promotion approach called the PAX within 8 First Nations communities. This presentation describes a research process whereby First Nations community members and researchers worked in collaborative and culturally safe ways to reach their research objectives.
ApproachBuilding on a strong existing relationship between Swampy Cree Tribal Council (SCTC) members from Northern Canada and academic researchers, a team was formed to prepare the research proposal. This team included community members, leaders from First Nations organizations, decision makers, program developers and researchers. This research was guided by two-eyed seeing, a principle developed by a Mi’kmaw Elder, that recognizes both Indigenous and Western ways of knowing, where one worldview does not dominate the other. The research process was compliant with Ownership, Control, Access, and Possession (OCAP) principles that ensure self-determination of First Nations communities over research involving their people.
ResultsA First Nations community liaison was hired as a research team member ensuring that traditional and cultural protocols were adhered to and connections to community members facilitated and sustained. Over the course of the research, the team met monthly to oversee implementation and annually with SCTC community members for guidance and for sharing and interpreting results. All 8 communities were actively engaged and benefitted from their involvement. Seeing the value of examining PAX’s effectiveness through linkages to administrative datasets, community members supported engagement of an additional 16 First Nations communities thereby ensuring an adequate sample size for the study. Health and education databases were linked to program data from 20 First Nations communities. Infographics, lay summaries and presentations were prepared for meaningful knowledge exchange.
ConclusionFirst Nations communities deemed it essential to understand what works and for whom regarding mental health promotion. Building relationships with First Nations community members based on trust and respect provided information that was relevant and beneficial to their communities. This relationship-building should be considered when developing research timelines and budgets.
Linking Administrative Test and Trace Data to the Covid-19 Infection Survey to Improve Analysis of Positivity and Vaccine Effectiveness.
Authors: Booth Lizzy , Murphy Sarah 
Published: September 2022

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