bluuebunny/crossref_metadata_2025_split huggingface dataset:
Evolving population data linkage services to transform large-scale biobanking services
Authors: Irvine Katie , Ong Vivienna , Cooper Simon , Thackway Sarah 
Published: September 2018

IntroductionMany population data linkage centres have been established to provide a mechanism for making linked administrative data available to approved third parties within robust governance frameworks. While current models support a wide variety of research, modifications are required for linked administrative data to better position biobanking research infrastructure.
Objectives and ApproachWe have sought to reconfigure population data linkage services to enhance the value of a newly established state-of-the art population and disease biobank embedded within a state based pathology network, equipped with robotic technology, with the capacity to store and process more than 3 million samples from participants consenting to data linkage and future unspecified research.
ResultsThree data service streams have been developed: longitudinal data linkage, cohort management and targeted recruitment. Traditional infrastructure for population data linkage will support the longitudinal data linkage stream, making data and biospecimens available for research, without direct patient identifiers. Technical and governance changes are necessary to enable the rapid release of contemporaneous patient and health system data for cohort management and recruitment purposes. The cohort management stream seeks to significantly reduce the manual follow-up of administrative data. The newly developed targeted recruitment service will leverage on the jurisdictional data holdings and structure of the health system and pathology network, to identify optimal sites and service providers for patient recruitment at scale, in an expedited manner.
Conclusion/ImplicationsModest changes to population data infrastructure have significant potential to enhance biobank research infrastructure. By fast tracking biospecimen accrual for diseases of population subgroups of strategic importance, this new service is intended to promote biobank viability, accelerate the pace of clinical trials recruitment and improve patient access to trials.
Describing hospital utilisation and associated factors following stroke using linked clinical registry and hospital administrative data.
Authors: Andrew Nadine , Kilkenny Monique , Sundararajan Vijaya , Kim Joosup , Thrift Amanda , Johnston Trisha , Grimley Rohan , Gattellari Melina , Katzenellenbogen Judith , Lannin Natasha , Boyd James , Flack Felicity , Chen Ying , Cadilhac Dominique 
Published: September 2018

IntroductionSurvivors of stroke have complex needs from ongoing disabilities and have increased risk of cardiovascular diseases. The societal costs are therefore substantial. Person-level longitudinal data on the longer-term hospital utilizations of patients with stroke in Australia, and the factors that may influence usage in this setting, are rarely reported.
Objectives and ApproachWe used person-level linkages between the Australian Stroke Clinical Registry (AuSCR: 2009-2013) and hospital admission and Emergency Department (ED) data from four states to examine determinants of hospital utilisation following stroke. The index event was the first event recorded in AuSCR. The rate of hospital contacts/person/year was calculated from contacts 30-365 days post-discharge. Disability was determined from responses to EQ-5D-3L data collected at 90-180 days post-stroke. Comorbidities were identified using ICD-10 discharge diagnosis codes (5 year look back including the index event). Negative binomial regression was used adjusting for patient clustering by hospital and pre-stroke contacts and stratified by disability.
ResultsAmong 10,082 adults with acute stroke (55% male, median age 74 years, 81% ischaemic, 14% hemorrhagic, 5% undetermined, 44% with disability) from 39 hospitals, 57% had a hospital admission or ED contact in the first 30-365 days post-hospital discharge, with median contacts/person/year post-stroke of 1.09 (Q1, Q3: 0, 3.27) compared to a pre-contact rate of 0 (Q1, Q3: 0, 2.18). The strongest associations with subsequent hospital contacts were prior contacts (IRR:1.10, 95%CI:1.07, 1.13), not able to walk on admission (stroke severity) (IRR:1.19, 95%CI 1.07, 1.31) and having a higher comorbidity index score (IRR:1.18, 95%CI:1.14, 1.22). Within stratified cohorts younger age was associated with increased contacts in those with disability (
Conclusion/ImplicationsIn a large linked cohort of patients we have demonstrated the substantial ongoing burden that stroke imposes on hospital systems, particularly regarding survivors with other comorbidities and younger survivors with disability. Knowledge of disability and comorbidity burden may assist with targeting community and hospital interventions to reduce post-stroke hospital usage.
Population Analysis of the Settlement Movement in Western Canada
Authors: Antonie Luiza , Baskerville Peter , Grewal Gary , Turcotte Benjamin 
Published: September 2018

IntroductionThe Canadian settlement of the west, via granting free homesteads, is perhaps one of the largest public policy undertakings in the nation's history. However, little is known about the homesteaders themselves, where they came from, how long they stayed and the settlement environment that was created at the time.
Objectives and ApproachThis research adopts a detailed population analysis of the settlement movement in Western Canada. In addition to outlining the social and economic characteristics of the homesteaders, the project answers the following central question: Did it create a stable society of settlers or did it create a field for speculative investment?
The data consist of machine readable individual level databases containing detailed information on and stories from circa 170,000 Alberta homesteaders. These homesteaders will be individually linked to three twentieth century Canadian censuses and the Canadian Pacific Railway's land records to provide an unprecedented holistic analysis of Alberta's early European population.
ResultsWe report on the linkage methodology used to integrate all these data sources. In addition, we discuss any particular issues we encountered given the nature of the historical data. We describe the data cleaning and standardization that was undertaken to facilitate the linkage process. We present and discuss the linkage results obtained, how much of the population was linked and what are the characteristics of those we couldn’t link.
We expect that this research will shed new light on persistence rates, trajectories of family composition, nature of labour market adjustment, degrees of social/gender inequality and impacts on regional development. The results will challenge many myths concerning homesteaders and their impact on western Canada and in the process provoke renewed discussion of western Canadian history.
Conclusion/ImplicationsThe research will inform and be informed by work currently being undertaken on migration patterns at the international level. Finally the research has implications for understanding the legacies of rapid population movements, state formation, public policy and national identities in the present.
Harmonization of data from cohort studies– potential challenges and opportunities
Authors: Dahal Kamala Adhikari , Patten Scott , Williamson Tyler , Patel Alka , Premji Shahirose , Tough Suzanne , Letourneau Nicole , Giesbrecht Gerald 
Published: September 2018

IntroductionPooling data from cohort studies can be used to increase sample size. However, individual datasets may contain variables that measure the same construct differently, posing challenges in the usefulness of combined datasets. Variable harmonization (an effort that provides comparable view of data from different studies) may address this issue.
Objectives and ApproachThis study harmonized existing datasets from two prospective pregnancy cohort studies in Alberta Canada (All Our Families (n=3,351) and Alberta Pregnancy Outcome and Nutrition (n=2,187)). Given the comparability of the characteristics of the two cohorts and similarities of the core data elements of interest, data harmonization was justifiable. Data harmonization was performed considering multiple factors, such as complete or partial variable matching regarding question asked/responded, the response coded (value level, value definition, data type), the frequency of measurement, the pregnancy time-period of measurement, and missing values. Multiple imputation was used to address missing data resulting from the data harmonization process.
ResultsSeveral variables such as ethnicity, income, parity, gestational age, anxiety, and depression were harmonized using different procedures. If the question asked/answered and the response recorded was the same in both datasets, no variable manipulation was done. If the response recorded was different, the response was re-categorized/re-organized to optimize comparability of data from both datasets. Missing values were created for each resulting unmatched variables and were replaced using multiple imputation if the same construct was measured in both datasets but using different ways/scales. A scale that was used in both datasets was identified as a reference standard. If the variables were measured in multiple times and/or different time-periods, variables were synchronized using pregnancy trimesters data. Finally, harmonized datasets were then combined/pooled into a single dataset (n=5,588).
Conclusion/ImplicationsVariable harmonization is an important aspect of conducting research using multiple datasets. It provides an opportunity to increase study power through maximizing sample size, permitting more sophisticated statistical analyses, and to answer novel research questions that could not be addressed using a single study.
Data linkage to national Australian health insurance data to investigate exposure to environmental hazards: the example of residential asbestos
Authors: Anderson Phil , Korda Rosemary , Law Hsei Di , Kirk Martyn , Guiver Tenniel 
Published: September 2018

IntroductionThe enrolment data for Medicare, the Australian universal health insurance provider, covers almost the entire population. Medicare data are commonly used for data linkage, usually to access national medical and pharmaceutical data. However, the enrolment data also enable the identification of geographical cohorts for studies analysing exposure to environmental hazards.
Objectives and ApproachOne example of this was the ACT Asbestos Health Study examining the health risks associated with living in houses insulated with loose-fill asbestos in the Australian Capital Territory. The Medicare Enrolment File contains the personal details and addresses of all people enrolled since 1984, including all updates to these details. We linked these data to a register of ~1100 affected properties, with subsequent linkage to the national death index and the Australian Cancer Database. We estimated Standardized Incidence Ratios (SIR) for selected cancers in people living in these houses to obtain a measure of exposure to environmental risk within the population.
ResultsAfter intensive cleaning and standardisation, nearly all (99.8%) of the affected addresses were linked. There were over one million people who had at least one ACT address between 1983 and 2013, and 2% of these had lived at an affected address and classified as exposed. The adjusted incidence of mesothelioma in exposed males was 2·5 times that of unexposed males (SIR 2·54, 95% CI 1·02–5·24), and there were some statistically significant results. The study population, number of deaths and cancers of interest were validated against the ACT census and registry figures. There were some limitations in coverage due to the period of available data, the frequency of address updates, and records with postal rather than residential addresses, but these were tested by sensitivity analyses.
Conclusion/ImplicationsThe study demonstrates the power of data linkage to (a) obtain a measure of exposure to an environmental risk within a population, and (b) obtain outcomes for the resulting case and control cohorts. This method could be applied in other risk studies where exposure is based on geography.
Emergency Department Use in Patients with Cancer: A Population-Based Study
Authors: Wang Grace , Bakal Jeff , McRae Andrew , Quon Harvey 
Published: September 2018

IntroductionEmergency Department (ED) visits in cancer patients represent a significant burden to both patients and the health care system. Emergency Care of cancer patients is complex compared to the population. There is lack of knowledge regarding the pattern and reasons for ED visits in this population.
Objectives and ApproachWe sought to identify factors and patterns associated with ED use among cancer patients, in the first year after diagnosis. Adult cancer patients diagnosed between 2011 and 2013 were identified from the Alberta Cancer Registry. This was linked with cancer related treatments extracted from medical records system at provincial cancer centers. ED visits and outpatient clinics were acquired from National Ambulatory Care Reporting System (NACRS). Databases were linked by unique patient identification number. Previous cancer patients were defined by having at least one cancer related diagnosis in NACRS before. The other patients were treated as non-cancer patients.
ResultsCancer patients accounted for 6.7% of ED visits and 10\% of ED hours. They had higher male percentage (53% vs. 49%), higher admission rate (23% vs. 10%), ambulance usage (20% vs. 12%) and longer stay (LOS) (171 vs. 131 mins) compared to non-cancer patients. 24% of cancer patients had 4 or more ED visits/year and accounted for 59% of visits. Lung and liver cancer patients had higher ED utilization than patients with other cancers. Breast cancer patients had more after-treatment-ED-visits (41% within a week vs. 26% in lung cancer). Use of ED was highest within 1 month of diagnosis for all types except breast cancer, which was highest at 2 months after. Differences were observed between urban and rural area for numbers reported above.
Conclusion/ImplicationsThese data suggest high ED utilization by cancer patients, and variation in utilization by cancer type. Identifying the timing and risk factors of ED visit for each cancer type, especially on frequent ED users presents opportunities to improve care in oncology clinics and ED.
Do callers of young children with fever follow the self-care recommendations given by a nursing triage line?
Authors: Manji Sofiya , Garner Charlene , Steinlicht Delores , Edwards Sarah , McDonald Sheila 
Published: September 2018

IntroductionThe management of fever can be a stressful situation for caregivers of young children. Accessing emergency departments and urgent care centres (ED/UCCs) due to concerns about fever and the potential consequences of child fever is common, despite fever rarely being considered a medical emergency.
Objectives and ApproachDetermine the non-compliance rate with public health advice for self-care at home for young children (3-35 months) with a fever. Non-compliance was defined based on the presence of a record of healthcare use within 72 hours following a call to a nurse telephone triage line, Health Link (HL), and receiving a self-care recommendation. Callers between October 2015-March 2016 were identified and linked with four databases: registry files, National Ambulatory Care Reporting System; Inpatient-Discharge Abstract Database and Physician Claims (N = 879). Overall non-compliance rate and descriptive analysis by child age, caregiver age, geography, and call time were completed.
ResultsThe overall non-compliance rate with HL advice was 35.6%. Among callers, 17.5% visited an ED/UCC, 1.1% had an inpatient hospital admission, and 21.3% visited a physician’s office. Among the patients that utilized health care services after the HL call, 13.6% only visited ED/UCC, 18% only visited a physician’s office, and 4% utilized more than one type of health care service. Callers in rural and rural remote areas had lower odds of visiting a physician’s office compared to the urban areas (p-value <0.01). No significant differences were found by child age, caregiver age or time of call.
Conclusion/ImplicationsFindings of this study suggest that approximately one-third of callers are not following the telephone triage advice, potentially leading to unnecessary increased burden on the healthcare system. Further study is warranted to examine reasons for non-compliance. Strategies to increase compliance in caregivers should be explored.
Adherence And Persistence To Antidepressant Medication During Pregnancy: Does It Differ By The Class Of Antidepressant Medication Prescribed?
Authors: Dahal Kamala Adhikari , Patten Scott , Lee Sangmin (Sarah) , Metcalfe Amy 
Published: September 2018

IntroductionPregnant women are often concerned about the impact of antidepressant medication use on their pregnancy, such as congenital abnormalities. This concern may vary in a way that depends on the class of antidepressant medication prescribed.
Objectives and ApproachThis study examined the rate of adherence and persistence to antidepressants based on the class of antidepressants prescribed during pregnancy This is a retrospective cohort study using population-based administrative data in Alberta– linking delivery record, hospitalization data, physician claims data, emergency department data, and prescription medication data. The eligible study population included women with depression who gave birth between 2012-2015, and were adherent (medication possession ratio ≥80%) to ≥ 2 consecutive antidepressant prescriptions during the preconception year (n=1,865). The rates of adherence and persistence (prescription refill gap ≤30 days) were calculated by medication class and were compared using chi-square tests.
ResultsDuring pregnancy, 834 (44.7%) women completely stopped taking antidepressants. Among those taking antidepressants, the overall rate of adherence was 62.6% (95% CI: 59.4%, 65.7%). The rate differed significantly by medication class (p<0.0001), with rate of 75.1% (95% CI: 68.3%, 80.9%) for serotonin-norepinephrine inhibitors, 60.9% (95% CI: 57.2%, 64.5%) for selective serotonin reuptake inhibitors, 42.9% (95% CI: 19.9%, 69.2%) for non-selective monoamine reuptake inhibitors, and 37.5% (95% CI: 22.4%, 55.4%) for the atypical antidepressants. Similarly, 40.7%, (95% CI: 37.5, 44.0) of women were persistent to antidepressants up to the full pregnancy period – similar to the adherence pattern, the rate differed significantly by medication class.
Conclusion/ImplicationsAdherence to and persistence in using antidepressants is low during pregnancy and it varies by medication class, possessing to the worsening of depression symptoms. This could be improved by conducting more research on drug safety during pregnancy and translating research evidence into treatment decision and correcting mothers’ misperceptions towards antidepressants.
Training Coding Specialists for the Future: Methods and Materials for the Beta Version of ICD-11
Authors: Eastwood Catherine , Southern Danielle , Boxill Alicia , Maciszewski Malgorzata , Quan Hude , Cullen Denise , Penchoff Margaret , Ghali William 
Published: September 2018

IntroductionIn June 2018, the World Health Organization (WHO) will release the 11th Version of International Classification of Diseases (ICD-11). New training methods and materials are required. As a WHO Collaborating Center, with Canadian Institute for Health Information (CIHI) members, we trained 6 coding professionals for testing ICD-11 coding processes.
Objectives and ApproachThe objective was to achieve a high level of inter-rater reliability using ICD-11 for acute care chart coding. We used Adult Learning principles with CIHI members and 6 certified coding specialists to co-create presentations, practice materials, and decision trees to teach knowledge and skill with ICD-11 tooling and content. Training involved 14 hours of interactive learning plus additional practice hours. A bank of questions and coding scenarios tested knowledge and application of ICD-11 terminology and principles. Coding was undertaken on a set of 3000 randomly selected inpatient Calgary hospital discharges as part of a large CIHR funded ICD-11 field trial.
ResultsThe coding team achieved an average score of 84% on the ICD-11 coding quiz and 0.65 (0.33 -1.0) agreement on parent code of main condition for the coding quiz scenarios. 60 inpatient charts were coded by more than one coder to test inter-rater reliability. Agreement was ≧ 0.80 for the majority of parent codes for main condition. Coding differences may be due to unfamiliar code choices or training gaps. New code descriptions in ICD-11 enhance code selection. Challenges included training while codes were being built in the ICD-11 browser, and minimal coding rules or standards.
Conclusion/ImplicationsRecommendations include more code descriptions in the browser and rules in a reference guide, teaching from simple to complex conditions, and multiple scenarios with ‘gold standard’ codes for practice. Reference Guide, Coding Tool, and Browser recommendations have been shared with members of the WHO Morbidity and Quality & Safety Advisory groups.
Effect of the Look-back period for the estimation of the incidence rates using administrative data
Authors: Kim Mira , Chae Kyung-Hee , Jung Chai Young , Chung Youn-Jee , Lee Minkyoung , Kim Hyun-Kyung , Hwang Hye-Jin , Choi Hyun-Hee , Kim Mee-Ran , Kim Sukil 
Published: September 2018

IntroductionAdministrative data are widely used to estimate epidemiologic indicators. The look-back period is needed to define baseline population for the incidence. However, short look-back period is known to overestimate incidence of diseases misclassifying prevalent cases to incident cases. A short look-back period with longer observation period causes misclassification more inconsistent.
Objectives and ApproachThe purpose of the study is to estimate the incidence rate of uterine leiomyoma by adjusting the misclassification error. We selected 319,608 women aged 15- 54 in 2002 from Korean National Health Insurance Service (KNHIS) cohort data. 34,445 cases were identified during 2002 - 2013. We applied 1-year look-back period as of 2003 and the actual look-back period increases with year, which incurs inconsistent misclassification error. Multiple regression model was used to estimate the number of incidence cases of the 11th look-back year for each year. Annual and adjusted annual incidence rates of uterine leiomyoma were calculated and compared.
ResultsThe annual number of patients(X1) is linearly related with the number of misclassification cases, and the number of misclassification cases are logarithmically associated with the look-back periods(X2). The regression equation was 0.07217 (y= 0.07217+ 0.00003213* X1 + 0.07992*ln(X2), R2=94.3). Crude incidence rate of uterine leiomyoma during the study period was 11.7% (35,992 cases) and adjusted rate was 10.5% (32,477cases). The annual incidence and adjusted annual incidence increased by 2.29 times and 2.86 times between 2003 and 2013, respectively. With look-back period of 11 years, 4,588(53.8 %) patients with uterine leiomyoma were estimated to have prior history of the disease.
Conclusion/ImplicationsWe proposed an adjustment for the misclassification error according to look-back periods. The method is applicable to estimate various healthcare events such as disease incidences and healthcare usage. Although the regression model showed very strong R-squared, follow-up study after several years is needed to validate the study results.