bluuebunny/crossref_metadata_2025_split huggingface dataset:
A National Concept Dictionary
Authors: Azimaee Mahmoud , Victor J. Charles , Vermeulen Marian , Smith Mark 
Published: September 2018

Overall objectives or goalMost of the organizations that use population administrative data for research purposes have internal repository of validated definitions and algorithms of their own. Many of these concepts and definitions are applicable or at least adaptable to other organizations and jurisdictions. A comprehensive National (and potentially International) Concept Dictionary could help investigators to carry out methodologically sound work using consistent and validated algorithms using a shared pool of knowledge and resources.
The Institute for Clinical Evaluative Sciences (ICES) in Ontario, Canada has recently modernized its internal Concept Dictionary by adopting standard templates based on the Manitoba Centre for Health Policy (MCHP) Concept Dictionary, reviewing and updating existing content and tagging the concept entries with appropriate MeSH terms and data sources, and adding standard computer code (e.g., SAS coding) where appropriate. A SharePoint® web-based application has been developed to provide advanced tagging, searching and browsing features.
We envision a wiki-based Concept Dictionary hosted on a cloud-based environment with very granular access controls to provide enough flexibility for each participating organization to control their own content. This means each organization will be able to decide on how to share their own concepts (or part of them) with the public or internal users.
All content will be tagged with MeSH terms and as well with the organization’s name that initially posts each entry. Other organizations which find the same concept applicable to their own use can tag the same entry with their organization name or refer to a secondary adapted entry if adaptation to fit their data and methodologies is required.
The Search feature will allow refining the search criteria by MeSH terms, data sources, and also organization/jurisdiction name.
Multiple layers of access controls will allow each organization to have their own groups of users with different standard privileges such as Local Administrators, Authors and Approvers (or Publishers).
The Approver (Publisher) users within each organization can publish each entry for internal or public view. This way, for example, a definition/algorithm can be viewable only within the organization until the validation process is complete, and then the entry can be made publically available, while some sections, such as computer code, can remain restricted to the organization.
We will discuss challenges in developing and maintaining such a platform including the costs, governance, intellectual property rights, copyrights and liabilities for the participating organizations.
The intended output or outcomeWe aim to use this opportunity to form a working group from the interested organizations that are ready to participate and commit in developing this collaborative platform. After the conference, there will be follow up sessions with the members of the working group to plan and develop the online application.
Interaction between mother’s age and schooling at birth on under-five mortality
Authors: Aguiar Fernanda , Guimarães Patricia , Guillen Luis Carlos , Camargo Kenneth , Sobrino Rejane 
Published: September 2018

IntroductionPregnancy at age extremes and low maternal schooling are associated with under-five mortality. However, we found no study in the literature that evaluated the interaction between mother’s age and schooling on under-five mortality measured in both multiplicative and additive scales.
Objectives and ApproachTo analyze the interaction between mother’s age and schooling on under-five mortality in a birth cohort in Rio de Janeiro City (Brazil) (N=153,527 live births). We carried out a non-concurrent cohort study using probabilistic record linkage of birth and death records for Rio de Janeiro (Brazil). The association between under-five mortality according to mother’s age (15-19, 20-34 and 35 years or more) and schooling (less than 4 years; 4 to 11 years and 12 or more years of schooling) were estimated using generalized linear models with binomial distribution and Neperian logarithm function. The interaction was evaluated in both scales.
ResultsThe under-five mortality rate was 14.0 per thousand live births. Higher rates were observed among women with less than 4 years’ schooling and in age extremes. When compared with women aged 20 to 34 years and with more than 12 years’ schooling, these women had the following risk ratios: 15 to 19 years – RR = 3.66 (95% CI 2.39; 5.62); 35 years or more – RR = 2.74 (95% CI 1.83; 4.11). We did not observe statistically significant interactions in the additive and multiplicative scales.
Conclusion/ImplicationsAlthough we did not observe an interaction between mother’s age and schooling, under-five mortality was more frequent among women with less the four years’ schooling, especially at the age extremes, suggests these are more vulnerable groups that demand greater attention in care.
Harnessing the Power of Administrative Data to Create a Provincial-Level Child Heath Profile and Birth Cohort in New Brunswick (NB) and Prince Edward Island (PEI)
Authors: Tranchant Carole , Montelpare William , Bélanger Mathieu , Miedema Baukje , Sénéchal Martin 
Published: September 2018

IntroductionEarly-life prevention of chronic diseases is crucial to a healthy adulthood. However, evidence is often lacking to assess the effectiveness of early intervention programs, partly because of failure to make use of existing data. This project aims to capitalize on existing administrative data in two provinces to address this gap.
Objectives and ApproachTo identify and evaluate selected administrative databases (AD) from NB and PEI to create an intra-provincial Child Health Profile (CHP) and establish the foundation for a population-based birth cohort database in each province using existing administrative data. Integrated knowledge translation (iKT) was implemented to facilitate the continuous involvement of knowledge users and stakeholders, including provincial government managers/decision-makers, data custodians, health practitioners, parents and community organizations. Consultations were held to identify the AD of interest and develop a roadmap for the CHP. For each dataset, a list and description of data and analytical variables was produced and data access requested.
ResultsNot all AD identified are equally complete and accessible to researchers. Data access, preparation and linkage are challenging but feasible. This process was facilitated by iKT, which also contributes to capacity building. Several AD, mainly healthcare AD, including the Healthy Toddler Assessment and NutriSTEP, are currently accessible. An analytic framework was developed for pulling the data together and planning their analyses to produce the CHP. Based on the data currently accessible, the first CHP will focus on data at birth and at 18 months. Other databases (e.g., preschooler assessments) may be included subsequently. Work is underway to create workable datasets from which the CHP and roadmap for the birth cohort are being developed. This approach is scalable and can be extended to other jurisdictions.
Conclusion/ImplicationsSelect AD in NB and PEI are rich resources for establishing a comprehensive CHP and population-based birth cohort database in each province. These new tools will enable various stakeholders to monitor and report on child health over the long term, and to evaluate current practices and future health interventions.
Swiftlink: a distributed, parallelised and scriptable linkage engine architecture for the 21st century
Authors: Farrow James 
Published: September 2018

IntroductionMany currently extant generic tools for performing bulk linkage were developed last century and while they have accreted features to improve their utility they have failed to fully exploit modern computing architectures. Custom highly-parallelised and distributed solutions exist but there is a need for a modern generalised linkage toolkit.
Objectives and ApproachThe aim of this project has been to design, from the ground up, a modern flexible, i.e. scriptable, linkage suite which also takes advantage of contemporary computing architectures to address issues such as distribution of computation, parallelisation of computation and cloud-based computation. Rather than being a monolithic linkage tool or a programming suite, a domain specific language has been developed to specifically describe linkage tasks. Linkage tasks written in this language are then 'executed' or 'compiled and run' to perform pair-wise calculations on data elements. Since linkage tasks are generally bespoke, scriptability has been an important consideration.
ResultsDeveloping a domain specific linkage language has enabled problem specification to be more descriptive and flexible than a monolithic linkage application. The shift in focus from a programming language to a linkage language has enabled a corresponding shift in focus to linkage-related effort (such as blocking and comparison strategies) away from distracting 'glue' code which relates not to linkage tasks under consideration but rather to the distracting bookkeeping aspects of programme execution. The same linkage task may be compiled against different back ends and languages, e.g. FEBRL (python), swift, Amazon lambda (go). The architecture has enabled otherwise idle computing resource to be utilised as well as cloud-based computing facilities for increased throughput and performance. The architecture of the linkage system will be shown with examples.
Conclusion/ImplicationsContemporary advances in computing sciences can and must be leveraged in modern linkage tools. By providing a custom scriptable linkage language, tasks may be more clearly specified in a manner more flexible than monolithic linkage applications and by uncoupling linkage specification from execution, linkage may be performed optimally across multiple machines and resources.
Synthetic data generator for testing record linkage routines in Brazil.
Authors: Trentin Vitor , Bastos Valeria , Costa Myrian , Camargo Kenneth , Sobrino Rejane , Guillen Luis Carlos , Coeli Claudia 
Published: September 2018

IntroductionRecord linkage has been increasingly used in Brazil. However, only a few studies report the quality of the linkage process. Synthetic test data can be used to evaluate the quality of data linkage.
Objectives and ApproachTo develop a synthetic data generator that creates test datasets with similar attributes and error characteristics found in the Brazilian databases.
We analyzed the 2013 mortality database from Rio de Janeiro State to know the characteristics and frequency distribution of the database attributes (name, mother’s name, sex, date of birth and address).
We used Python and C++ to customize and add routines to GeCo (http://dlrep.org/dataset/GeCo), a personal data generation tool developed by Tran et al. (DOI:10.1145/2505515.2508207).
ResultsBrazilian names have specific characteristics that distinguish them from other countries’ patterns: multiple family names are usual, as are composite first names, and, despite that, homonyms are frequent. Family names may include the full extension or only parts of either the father and mother’s respective family names, or both, so there is a wide variation in progeny family names and not necessarily a common family name for all family members.
Conclusion/ImplicationsDue to the specific national characteristics of name building in Brazil, modeling synthetic data is particularly challenging and needs to have more flexible rules in order to generate databases that will actually allow assessing the quality of data linkage processes.
Extracting Family Connections from Administrative Data
Authors: Vasquez Stacy Ann , Palfy Miro , Garcia Alexandre Franco 
Published: September 2018

IntroductionRecord linkage has existed for decades, regarded as an activity where an entity is ascertained across different data sources. Initially medically driven to determine further outcomes. Developments in technology led to cheaper computing and storage, which ushered capture of information beyond the primary entities such as carer’s details.
Objectives and ApproachAdministrative datasets that capture an event involving a child would more often than not, capture information about their parents or carers including relationship to the primary entity within the record.
The main objective was to exploit the connections across the entities captured in a record and have that as an additional layer of information that may contribute to context. All entities extracted from one record were clearly defined as related. Information was considered true at the point of capture. Then record linkage for all the individual entities extracted were performed.
ResultsFamily structures evolve and a family structure during birth may change by the time the child attends school where carer information was recorded during enrolment.
Each data source inevitably becomes a “source of truth” and understanding the different aspects of a dataset affects its credibility. Authority for collection dictates if the recording of the event is mandatory or optional and directly influences the coverage. The process of data capture and storage is also important; manual vs digital input and if any validation was present.
Application of family connection to specific types of research will dictate the relevant “source of truth”. If one is to use family connections in the context of hereditary diseases, pregnancy outcomes would be more suitable than a birth registry.
Conclusion/ImplicationsFamily unit as defined in the traditional sense have changed and all variations are reflected in the data.
Assessing the impact of social connections to ones health may now be possible. Extracting these connections from administrative datasets can serve as additional intelligence that may inform if not shape longitudinal studies.
Exploring outcomes for children who have experienced out-of-home care in Western Australia.
Authors: Lima Fernando 
Published: September 2018

IntroductionChildren who have been in out-of-home care have faced significant issues during their lives, and they are considered one of the most vulnerable groups in society. Given the limited evidence in Western Australia about outcomes for care-leavers, this study represents a base line for future studies of care-leavers outcomes.
Objectives and ApproachA retrospective cohort study exploring the outcomes for young people born between 1990-1995, who have reached at least 18 years of age and have had a period of care, compared to other similar children in WA. This project used administrative linked data from the Department of Communities Child Protection and Family Support Division, Departments of Health, Education, and Corrective Services. This study undertook a descriptive approach to compare outcomes for young people who have left out-of-home care, and logistic regression modelling to explore the odds of having poorer outcomes among those who had a period in care.
ResultsYoung people aged 18 years and over who had been in out-of-home care had worse outcomes compared to controls. Care-leavers had nearly twice the hospital admission rate of those who never had contact with the child protection system, almost three times more likely to have a mental health related contact, less likely to achieve a high school completion certificate and attend University, and more likely to have a juvenile community sentence or adult detention.
A group of young people who had a period in care were identified as more likely to have ‘poorer outcomes’ compared to the rest of the Care group if they: were Aboriginal; female; born in a more disadvantaged area; and first entered care after the age of 10.
Conclusion/ImplicationsYoung people who have been in care are at high risk of a range of poor outcomes, even compared to other children who have experienced similar disadvantage. Regardless of the causes, it is incumbent upon the State as acting ‘parents’ to provide the best possible support to improve their outcomes.
A Large Linked Study to Evaluate the Future Burden of Cancer in Australia Attributable to Current Modifiable Behaviours
Authors: Laaksonen Maarit A , Arriaga Maria E , Canfell Karen , MacInnis Robert , Hull Peter , Banks Emily , Giles Graham G , Mitchell Paul , Cumming Robert G , Byles Julie E , Magliano Dianna J , Shaw Jonathan , Taylor Anne , Gill Tiffany K , Hirani Vasant , Marker Julie , McCullough Susan , Velentzis Louiza S , Adelstein Barbara-Ann 
Published: September 2018

IntroductionThe cancer burden preventable through modifications to risk factors can be quantified by calculating their population attributable fractions (PAFs). PAF estimates require large, prospective data to inform risk estimates and contemporary population-based prevalence data to inform the current exposure distributions, including among population subgroups.
Objectives and ApproachWe provide estimates of the preventable future cancer burden in Australia using large linked datasets. We pooled data from seven Australian cohort studies (N=367,058) and linked them to national registries to identify cancers and deaths. We estimated the strength of the associations between behaviours and cancer risk using a proportional hazards model, adjusting for age, sex, study and other behaviours. Exposure prevalence was estimated from contemporary National Health Surveys. We harmonised risk factor data across the data sources, and calculated PAFs and their 95% confidence intervals using a novel method accounting for competing risk of death and risk factor interdependence.
ResultsDuring the first 10-years follow-up, there were 3,471 incident colorectal cancers, 640 premenopausal and 2,632 postmenopausal breast cancers, 2,025 lung cancers and 22,078 deaths. The leading preventable causes were current smoking (53.7% of lung cancers), body fatness or BMI ≥ 25kg/m2 (11.1% of colorectal cancers, 10.9% of postmenopausal breast cancers), and regular alcohol consumption (12.2% of premenopausal breast cancers). Three in five lung cancers, but only one in four colorectal cancers and one in five breast cancers, were attributable to modifiable factors, when we also considered physical inactivity, dietary and hormonal factors. The burden attributable to modifiable factors was markedly higher in certain population subgroups, including men (colorectal, lung), people with risk factor clustering (colorectal, breast, lung), and individuals with low educational attainment (breast, lung).
Conclusion/ImplicationsEstimating PAFs for modifiable risk factors across cancers using contemporary exposure prevalence data can inform timely public health action to improve health and health equity. Testing PAF effect modification may identify population subgroups with the most to gain from programs that support behaviour change and early detection.
Needs and priority areas for building capacity for working with linked data in the Australian pharmacoepidemiology workforce
Authors: Lopez Derrick , Daniels Benjamin , Sanfilippo Frank , Pearson Sallie , Martini Angelita , Preen David B 
Published: September 2018

IntroductionLinked data are increasingly used in pharmacoepidemiology studies to enhance value beyond that which can be achieve from stand-alone pharmaceutical data. The complexity of pharmaceutical data can make any linked data analysis challenging and it is imperative that this is matched by the human capacity to perform this work.
Objectives and ApproachResearch is needed to understand the state of the current pharmacoepidemiology workforce and to prioritise its capacity building needs. We aim to profile the Australian pharmacoepidemiology workforce to explore views, needs, priority areas and perspectives relevant to capacity building. Participants are the regular pharmacoepidemiology workforce (Group 1) and senior medicines stakeholders (Group 2). Following a literature review and consultation with a group of key informants, we developed survey and interview instruments for each group. We piloted the instruments in February 2018 and study data collection is planned for March 2018. We will use a mixed-methods approach to analyse the data.
ResultsWe conducted a review of existing literature and identified workforce views, needs and priorities at four levels: personal, team, organisation and wider community. During the consultative process, the informants highlighted the multidisciplinary nature of the pharmacoepidemiology workforce including many with non-health related backgrounds. They also raised concerns about attracting applicants with suitable skills and experience, job satisfaction, career progression and workforce retention. We developed instruments to (i) further explore these issues, (ii) ascertain their experience with linked health data, (iii) determine their training needs, and, (iv) learn about their future intentions. We will present findings on issues pertinent to the Australian pharmacoepidemiology landscape and suggest priorities for building workforce capacity.
Conclusion/ImplicationsThis study will provide empirical evidence to support and prioritise capacity building in the Australian pharmacoepidemiology workforce to improve their ability to work with linked data. The instruments that we developed and findings may be relevant to phamacoepidemiology workforce in other countries and other emerging fields that use linked data.