bluuebunny/crossref_metadata_2025 huggingface dataset:
Linking surveillance and climate data to combat malaria
Authors: Sironi Alberto , Barreto Marcos , Bertoldo Juracy , Conceição Daniel , Sampaio Vanderson
Published: September 2018

IntroductionMalaria is an infectious disease that affected nearly 215 million individuals in 2015. In Brazil, there are various information systems targeted to store data from disease notification, including malaria surveillance. However, these databases are identified and difficult to be accessed by researchers due to privacy restrictions.

Objectives and ApproachOur goal is to integrate data from two different malaria surveillance systems, as well climate, hydrographics and socioeconomic data, to support ecological and cohort-based analyzes on malaria recurrence, parasitic classification assisted by machine learning methods and epidemics forecasting.

Our approach so far was to generate data sets organized by municipality of residence and by municipality of infection and the disposal of these data sets with information aggregated on monthly and annual basis. We expect these databases can be freely used by any researcher intending to conduct studies on malaria using governmental data.

ResultsOur current results comprise data sets with information aggregated by municipality of residence, for all municipalities within the Amazonian region (n=772), and by municipalities of infection with active transmission (n=613). For both case, we added variables referring to demographic, socioeconomic, climatological and hydrological data for the period 2010 to 2015 in an annual and monthly form.

We also performed a machine learning-based classification to group notifications according to the type of parasite into P. vivax, P. falciparum and mixed cases. Our goal is to identify similar and different characteristics among such groups that can be used to correctly assess recurrence, as well support epidemic forecasting.

Conclusion/ImplicationsFrom the databases we created, it will be possible to implement an indexing structure with related metadata, as well publicize these databases to allow for free access by researchers. Currently, we are also running different predictive analytics methods (including visualisation) targeted to generate a forecast model for malaria epidemics.
Survival outcomes of a population-based cohort of adolescent and young adult (AYA), acute lymphoblastic leukemia (ALL) patients in Ontario, Canada: The IMPACT Cohort
Authors: Lau Cindy , Pole Jason , Sutradhar Rinku , Baxter Nancy , Nathan Paul , Gupta Sumit
Published: September 2018

IntroductionAdolescents and young adults (AYA) are an understudied population in cancer research. The Initiative to Maximize Progress in Adolescent and Young Adult Cancer Therapy (IMPACT) cohort includes Ontario individuals aged 15-21 years, diagnosed with a malignancy during 1992-2011. This cohort contains a rich source of patient, disease, and treatment data.

Objectives and ApproachThe IMPACT cohort was created using chart review and linkages to population-based health services databases. The cohort is comprised of AYA with a primary diagnosis of acute leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, sarcoma, or testicular cancer. For the current study, we focused on acute lymphoblastic leukemia (ALL) patients, and examined survival outcomes of those treated at pediatric vs adult centers, with adult vs pediatric protocols. We assessed 5-year event-free survival (first of relapse, progression, secondary malignant neoplasm, or death) and overall survival.

ResultsThe IMPACT cohort contains 2,963 patients, of which 152/271 ALL patients were treated at adult centers. The 5-year event-free survival (EFS ± standard error) among those treated at a pediatric vs. adult center was 72%±4% vs. 56%±4% (p = 0.03), respectively. The 5-year overall survival (OS) was 82%±4% vs. 64%±4% (p

Conclusion/ImplicationsALL patients treated with a pediatric protocol at a pediatric center experienced better, crude survival outcomes compared to those at an adult center. The IMPACT cohort offers the opportunity to study a myriad of questions on different cancer groups, with the ultimate goal of improving outcomes among the AYA population.
Developmental vulnerability at age five among children who enter and progress through the child protection system in New South Wales, Australia: a cross-sectoral data linkage study
Authors: Falster Kathleen , Hanly Mark , Pilkington Rhiannon , Chilvers Marilyn , Whittaker Elizabeth , Lynch John
Published: September 2018

IntroductionA recent independent review of the child protection system in New South Wales (NSW), Australia, highlighted the need for whole-of-government reform to improve outcomes for children at risk of, or experiencing, maltreatment. Population-level evidence on outcomes of children who enter and progress through the child protection system is currently lacking.

Objectives and ApproachWe aimed to quantify developmental vulnerability at age five among children who enter and progress through the child protection system during early childhood to demonstrate the value of cross-sectoral data linkage to inform and evaluate policy at a population-level. We used Australian Early Development Census (AEDC) data linked to cross-sectoral population datasets in NSW, including birth registrations, perinatal, and child protectionnotification and out-of-home care (OOHC) placement data. Linked AEDC data, collected in 2009 and 2012, areavailable for 153,670 NSW children. Socio-demographic and perinatal characteristics available in the linked data were used to characterise the population.

Results21,179 (13.9%) children had ≥1 ‘screened in’ notification, 4927 (3.2%) had ≥1 substantiated abuse and neglect notification, and 2177 (1.4%) had ≥1 OOHC placement before their fifth birthday. Indicators of disadvantage and adverse birth outcomes were more common among children who progressed to higher levels of the child protection system. The proportion developmentally vulnerable on ≥1 domains of the AEDC increased for children who entered and progressed through the child protection system; from 21% of children with no contact with child protection before age five, to 39% of children with ≥1 ‘screened in’ notification, 50% with ≥1 substantiated notification, and 54% with ≥1 OOHC placement before their fifth birthday. Comparison of findings from other Australian jurisdictions with similar data will be discussed.

Conclusion/ImplicationsThis study demonstrates there is scope to improve developmental outcomes through targeted interventions among children who become known to child protection during early childhood in NSW. Moreover, it illustrates that cross-sectoral data linkage can be used to inform and evaluate policy reforms to drive better outcomes for vulnerable children.
Incidence, recurrence and predictors associated with recurrence of low birth weight in Northern Tanzania
Authors: Mahande Michael Johnson , Obure Joseph , Mvunta Miriam Hamis
Published: September 2018

IntroductionLow birth weight (LBW) is an important indicator of newborn survival and is associated with higher risk of infant mortality, morbidity and long term health consequences later in life. Little has been explored on the recurrence of LBW and associated risk factors in developing countries including Tanzania.

Objectives and ApproachThis study aimed to determine incidence, recurrence and associated risk factors for in Northern Tanzania.

MethodsThis was a retrospective cohort study using maternally-linked data from Kilimanjaro Christian Medical Centre (KCMC) medical birth registry. A total of 48,008 births from 8,417 women who delivered live born between 2000 and 2014 were followed for subsequent deliveries. Recurrence risk with 95% Confidence Interval for LBW and associated risk factors were estimated in a multivariate log binomial model while accounting for correlation between births of the same mother.

ResultsIncidence of LBW was 7.9%. The recurrence rate of LBW was 24.9% compared with 5.9% for those who had normal birth weight babies in first pregnancy. This corresponded to a relative risk of 3.7 (95% CI: 3.10 – 4.52). Some maternal conditions in the first pregnancy were associated with increased risk of LBW in the subsequent pregnancy. These include; HIV positive status (RR 2.0; 95% CI 1.26 – 3.21), preterm birth (RR 1.2; 95% CI 1.03 – 1.63) and preeclampsia (RR 1.8; 95% CI 1.26 – 2.45). Only preeclampsia in the first pregnancy was associated with increased risk of recurrent of LBW (RR: 1.6 95% CI 1.01-2.54).

Conclusion/ImplicationsAlthough the incidence of LBW is low in the study population, but the recurrence risk is high. Preeclampsia in the first pregnancy was associated with recurrent LBW. Early prenatal identification of women at risk of preeclampsia to address modifiable risk factors and counsel mothers on persisting risk factors for recurrence
Supporting Applied, Multidisciplinary Analytic Skills: An Innovative Training Platform for Researcher Capacity Building
Authors: Greenwood Ann
Published: September 2018

OverviewPopulation Health Research is inherently interdisciplinary, multifaceted and firmly rooted in the evolving connections between place, time and related socioeconomic processes. To excel in this rapidly diversifying field, individuals require a broad range of multidisciplinary skills gained through applied, collaborative and real world learning environments.

ObjectiveTo serve the emerging multidisciplinary skills and capacity building needs of Population Health Researchers within a rapidly diversifying field.

ApproachEstablishment of an innovative research training platform that supports skill development in an accessible, collaborative and applied learning environment. Designed in collaboration with a multi-university research platform, this fully online practice-based training environment both mirrors and supports many of the day to day skill development needs of health and social science researchers.

ResultsNow in its 6th year of delivery, the multidisciplinary focus of this specialized training platform is successfully addressing the skill development needs of a diverse cross section of health research professionals. Trainees are bringing a wealth of experience and knowledge to share with their online colleagues, supporting a rich, practice based education and skills development environment. Those enrolled in the program possess backgrounds ranging from Population and Public Health, Epidemiology, Statistics and Sociology to Medicine to Psychology, Geography, Biostatistics and International Health. Graduates of the program are gaining skills that benefit their research and careers. Lessons learned with respect to the development of the training platform and capacity building skills achieved by program graduates will be outlined.

Conclusion/ImplicationsProviding timely, practical, hands-on analytic skills training is critical to building the capacity of new and mid-career researchers and health professionals. Direct application of these new skills is an essential outcome and best measure of success. We are listening to our trainees and learning as we grow. Learn more here.
School readiness of maltreated children: Timing, type, and chronicity of maltreatment
Authors: Bell Megan , Bayliss Donna , Glauert Rebecca , Ohan Jeneva
Published: September 2018

IntroductionChildren who have been maltreated during early childhood may experience a difficult transition into schooling, due to maladaptive development of the abilities that are important for positive school adaptation. An understanding of how different dimensions of maltreatment relate to children’s school readiness is important for informing appropriate supports for maltreated

Objectives and ApproachIn this study, the Australian Early Development Census scores of 19,203 children were linked to information on child maltreatment allegations (substantiated and unsubstantiated), including the type of alleged maltreatment, the timing of the allegation (infancy-toddlerhood or preschool), and the total number of allegations (chronicity).

ResultsChildren with a maltreatment allegation had increased odds of poor school readiness in cognitive and non-cognitive domains. Substantiated maltreatment was associated with poor social and emotional development in children, regardless of maltreatment type, timing, or chronicity. For children with unsubstantiated maltreatment allegations, developmental outcomes according to the type of alleged maltreatment were more heterogeneous; however, these children were also at risk of poor school readiness irrespective of the timing and/or chronicity of the alleged maltreatment.

Conclusion/ImplicationsThe findings suggest that all children with maltreatment allegations are at risk for poor school readiness; these children may benefit from additional support to increase the chance of a successful school transition. Interventions should commence prior to the start of school to mitigate early developmental difficulties.
Factors predicting out-of-school suspensions for young children
Authors: Bell Megan , Bayliss Donna , Glauert Rebecca , Ohan Jeneva
Published: September 2018

IntroductionDespite limited evidence supporting the effectiveness of out-of-school suspension for rectifying behavioural issues, the practice continues. Certain demographic factors (male, ethnic minority, low SES) predict suspensions; however, developmental and family factors can also play a role. Knowledge of these factors may inform alternative practices aimed at limiting the practice of suspension.

Objectives and ApproachThis study investigated the relationship between out-of-school suspensions and demographic, developmental, and family factors. Children suspended in early schooling may be particularly at risk of poor school outcomes; thus, our sample includes children in the first years of school. Linked administrative data were obtained for 14,269 children enrolled in grade 3 at public schools in Western Australia. Multilevel logistic regressions were run, grouped by school, with out-of-school suspensions predicted by: child and parent demographic characteristics; a measure of children’s school-entry development (the Australian Early Development Census); and indicators of family risk (parental psychiatric hospitalizations, parental criminal offending, child maltreatment).

ResultsApproximately 2% of children had been suspended at least once by grade 3. Aboriginal children, boys, and children attending schools with high levels of socioeconomic disadvantage had significantly increased odds of being suspended from school (2 times, 6 times, and 3 times increase, respectively). Furthermore, children considered socially and emotionally vulnerable at school-entry were around 3 times more likely than their peers to be suspended in the first few years of school. Parental psychiatric hospitalizations, parental criminal offending, and child maltreatment all significantly predicted out-of-school suspensions. Odds increased exponentially with each additional family risk factor experienced in early childhood. Children experiencing all three family risk factors were almost 7 times more likely than their peers to be suspended at least once by grade 3.

Conclusion/ImplicationsOur results provide further justification for the implementation of alternatives to out-of-school suspension, as children who would most likely benefit from a stable, nurturing school environment were significantly more likely to be suspended. Schools need to be better supported by inter-agency collaboration to manage the complex needs of vulnerable children.
Public engagement with cohort participants in Scotland and India: How do participants want to shape mental health research?
Authors: Chapko Dorota , Butler Jessica , Black Corri , Johnston Marjorie , Fall Caroline , Kumaran Kalyanaraman , Krishnaveni Ghattu V , Murali Murali
Published: September 2018

IntroductionWe now have the opportunity to disentangle the complexities of lifespan brain health through linking rich birth cohorts data to novel information utilizing health informatics techniques. Wellcome Trust evidenced that efforts to manage and link digital health data require exploring the attitudes of public and data guardians towards this initiative.

Objectives and ApproachOur teams in Aberdeen, Mysore and Mumbai have established general population cohorts that have provided evidence on the early-life origins of later-life diseases. In 2016, we engaged with the participants of the Aberdeen Children of the 1950s (62-68,N~8,400) in an event attended by 350 study members. We are also engaging with members and data guardians of Mysore Parthenon Cohort (20-21y,N~500), Mysore Birth Records Cohort (51-83y,N~750), and Mumbai Maternal Nutrition Cohort (5-11y,N~1,600). This qualitative project utilises focus groups and individual interviews. The goal is to understand their attitudes and perceived public benefits towards future novel data collection, data platforms and biorepositories.

ResultsThe ACONF event attendees were very willing to volunteer for further studies. The highest support was for ‘provide a blood sample’ (92%) and the lowest for ‘take an online survey’ (83%). They were satisfied with data governance but had incomplete understanding of linkage possibilities with their data. Through the ongoing activities in Mysore and in Mumbai, we aim to achieve the following: 1) Develop awareness of health informatics through public engagement with participants and researchers; 2) Explore attitudes and potential barriers to creation of secure data linkage between imaging, laboratory, health data and outcomes to facilitate future linkage studies; 3) Understand what is required for interoperable, secure data storage and plan future biorepository as a resource for researchers that will build over time in India.

Conclusion/ImplicationsThe proposed activities will inform preparation of a large scale grant to investigate the hypothesis that early life environment affects future risk of mental illness and cognitive ability globally. They will also begin to create a platform of enduring value for future cross-cultural population research.
Association rule mining to identify potential under-coding of conditions in the problem list in primary care electronic medical records
Authors: Weaver Colin , Garies Stephanie , Williamson Tyler , McBrien Kerry , Peng Mingkai
Published: September 2018

IntroductionThe problem list of a patient’s primary care electronic medical record (EMR) generally reflects their important medical conditions. We will use association rule mining to assess between-provider and between-clinic variation in the coding of select conditions in the EMR problem list, in order to identify possible under-coding outliers.

Objectives and ApproachEMR data from participating clinics in the Canadian Primary Care Sentinel Surveillance Network (CPCSSN) will be used, with a focus on three commonly-occurring conditions (hypertension, diabetes, and depression). Association rule mining will be used to develop association rules between these conditions and other clinical information available in the EMR, such as other diagnoses in the problem list, billing codes, medications, and laboratory results (e.g., a rule of “diabetic medication→diabetes” indicates that patients prescribed a diabetic medication are likely to have diabetes in the problem list). Under-coding outliers at the provider and clinic levels will be identified by comparing rule enforcement.

ResultsResults from this work in progress will be presented at the conference. An estimated 270 clinics, 1340 providers, and 1.8 million patients will be included from the CPCSSN database. Rule ‘confidence’ will be used to identify outliers; the confidence of a rule X→Y is the proportion of individuals with X who also have Y (Pr(Y|X)). For example, we may find that on average 80% of patients prescribed a diabetic medication will also have a diagnosis of diabetes in the problem list (average confidence of 80%), but an outlier clinic may have a confidence of 40%; this low rule confidence may indicate under-coding of diabetes in the problem list. Confounding by patient demographics (e.g., age, sex, urban/rural) will be assessed and adjusted for, if necessary.

Conclusion/ImplicationsThis work examines a novel method to identify potential under-coding in the EMR problem list. Providers/clinics could use this information to update patients’ problem list or inform quality improvement interventions. Researchers using primary care EMR data need to be aware of potential under-coding and take steps to mitigate the effects.
Interactive Data Visualization of Patient Experience and Inpatient Datasets using Tableau Desktop
Authors: Kemp Kyle , Santana Maria , Quan Hude
Published: September 2018

IntroductionData visualization is a valuable means for reporting and interpreting large datasets. It allows users to present key messages from the data in a simple way. Although many industries have adopted and embedded data visualization within their analytic teams, healthcare has only recently begun to realize this potential.

Objectives and ApproachThe objective of this interactive presentation is to introduce Tableau (visualization software) and to provide quick, impactful examples of its use. Visualizations will be created using a free version of Tableau Desktop; available to students and academics. Two blinded datasets encompassing hospital discharges in Alberta from April 2014 to March 2016 will be used. The first dataset will contain approximately 50,000 patient experience surveys, as completed by patients within 6 weeks of their hospital discharge. The second dataset will contain inpatient records from the Discharge Abstract Database (DAD). Visualizations will be created using the individual and combined datasets.

ResultsFollowing a brief description of each dataset and its respective elements, a variety of interactive visualizations will be created in real-time. From the patient experience dataset, we will be able to quickly determine which hospitals have the highest overall rating from their patients. We will then display the results from all survey questions from a single hospital; allowing for a determination of areas where care is delivered well, and to provide opportunities for improvements. From the DAD, we will highlight hospital length of stay, and its relation with gender, age group, geography, and clinical condition. In the final portion of the presentation, both datasets will be linked to examine the relationships between survey responses, patient demographics, and clinical characteristics.

Conclusion/ImplicationsData visualization has great potential in healthcare. From this presentation, attendees will receive an introduction to its use using practical, real-world examples. The dynamic visualizations in this presentation will be created in mere minutes; a small fraction of the time typically spent by analysts to create static, paper-based reports.
Use of Large Data Sets in Evaluating Program Outcome in Pediatric Hearing Loss
Authors: Spruin Sarah , Olds Janet , Fitzpatrick Elizabeth , Rosella Laura , Nicholls Stuart , Pigeon Marie , Whittingham JoAnne , MacDougall James , Schramm David , Benchimol Eric
Published: September 2018

IntroductionPermanent hearing loss (PHL) in childhood can profoundly impact development, with high economic costs to children and society. Hearing technology and service delivery advances, including universal newborn hearing screening implemented in Ontario in 2002 as part of the Infant Hearing Program (IHP), aim to improve outcomes of children with PHL.

Objectives and ApproachWe examined the impact of IHP screening on age of identification of PHL, and compared healthcare utilization in children with and without PHL, in the Census Metropolitan Area of Ottawa. Children with PHL, identified from a database at the Children’s Hospital of Eastern Ontario, were linked to health administrative data housed at the Institute for Clinical Evaluative Sciences. Five residents of Ottawa acted as non-PHL controls for each PHL case. A regression discontinuity design (RDD) was used to investigate differences in age of identification pre- and post-IHP implementation. Poisson regression will compare healthcare utilization among children with and without PHL.

ResultsReceipt of the HBPB was associated with reductions in low birth weight births (adjusted Relative Risk (aRR): 0.77; 95% CI: 0.63, 0.93) and preterm births (aRR: 0.78 (0.68, 0.90)), and increases in breastfeeding initiation (aRR: 1.05 (1.00, 1.09)) and large-for-gestational age births (aRR: 1.11 (1.01, 1.23)). HBPB receipt during pregnancy was also associated with increases in 1- and 2-year immunizations for FN children (aRR: 1.14 (1.09, 1.19), and aRR: 1.28 (1.19, 1.36), respectively). Reductions in the risk of being developmentally vulnerable in the language and cognitive domain of the EDI were also found for FN children whose mothers had received the HBPB during pregnancy (aRR: 0.85 (0.74, 0.97).

Conclusion/ImplicationsIHP implementation resulted in earlier identificationof PHL in children, allowing earlier access to audiologic and habilitative services. However, children with PHL used the health system more often and in different ways from those without PHL. These results can support improvements in service delivery for children with PHL.
Using Australia’s National Data Linkage Demonstration Project (NDLDP) to improve cardiac care: Towards a national, whole-of-population linked data resource for evidence-informed health policy
Authors: Falster Michael , Schaffer Andrea , Jorm Louisa R , Wilson Andrew , Brieger David , Nasis Arthur , Emerson Lance , Pearson Sallie
Published: September 2018

IntroductionIn Australia, the Commonwealth, State and Territory governments are each responsible for specific aspects of health care. Historically, cross-jurisdictional health data have not been linked routinely, resulting in significant blind spots in our understanding of the interplay between hospital and primary care, a major impediment to evidence-informed health policy.

Objectives and ApproachIn December 2016, the Australian Health Ministers’ Advisory Council approved the NDLDP, to establish the value of national linked data to inform health planning and policy. The Australian Institute of Health and Welfare (AIHW) linked five years of hospital, emergency department, pharmaceutical dispensing, medical services claims and mortality data for Australia’s two most populous states (New South Wales and Victoria). The Victorian Agency for Health Innovation (VAHI) is leading the ‘Delivering better cardiac outcomes: Primary, specialist and hospital care’ project to demonstrate the value of the collection in identifying evidence-practice gaps and driving change in cardiac care.

ResultsThe NDLDP combined data for over 10 million individuals with over 7 billion records of health transactions, utilising a new strategy for confidentialising dates to protect patient privacy. The NDLDP is governed by a Steering Committee; the AIHW is the data custodian approving outputs from analyses within a secure host environment. VAHI established a Project Steering Committee to oversee roll-out, governance and capacity building of the approved cardiac project.

The VAHI project was instigated by evidence that best-practice pharmacological treatments for cardiac care are underutilised in Australia, but with no quantification of the population-level extent of this gap. The project quantified significant variations and underuse of post-discharge pharmacological care for patients admitted to hospital with key cardiac conditions, including atrial fibrillation and acute myocardial infarction.

Conclusion/ImplicationsThis collaboration between government, clinical networks and academic researchers demonstrated this novel data linkage can enable evaluation of patient care pathways across both hospital and community-based services. These linked data resources provide essential information to investigate variation in care in Australia and improve care integration in cardiac care and beyond.
Trajectory of service use among young Albertans with complex needs
Authors: Izakian Hesam , Cui Xinjie , Tough Suzanne
Published: September 2018

IntroductionYouth with complex-needs are vulnerable as a consequence of exposure to social adversity and/or chronic health conditions, and are at a high risk of school failure and justice involvement. Information about the patterns of service use across government sectors that influence the life outcomes of complex-needs youth is unknown.

Objectives and ApproachYouth with complex needs often engage with multiple services across multiple government sectors for extended periods of time. Understanding the patterns and trajectory of their service use may inform programs, decision makers and government in the optimal allocation of resources to increase their life outcomes. It may reveal where and when interventions would be most effective to improve the life course for vulnerable youth. In this study, through a unique approach to link over 20 administrative longitudinal datasets and a novel trajectory clustering technique, the patterns of service use among complex-needs young Albertans is revealed and visualized.

ResultsA trajectory clustering technique was applied to reveal patterns of service use among complex-needs individuals. Compared to the general population, higher proportions of youth with complex needs lived in low socio-economic neighborhoods, suffered from mental health issues, were high cost health service users, and had lower rates of high school completion. Furthermore, youth having complex needs for a longer period of time and who required multiple complex services in a given year had the poorest outcomes, in terms of high school completion, mental health issues, and other health problems. The majority of complex-needs youth came in contact with services via the education system, followed by child services/welfare.

Conclusion/ImplicationsThe trajectories of service use among complex-needs youth reveals that these individuals are primarily identified through education. Consequently, educational supports would best address the development of effective programs including mental health supports and other needs.
Using Free Text From Medical Notes To Enrich a Longitudinal Cohort Study
Authors: Humphries Kerry , Davies Amy , Wren Yvonne , Sandy Jonathan
Published: September 2018

IntroductionThe Cleft Collective Cohort study is the world's largest multidisciplinary cleft lip/palate research programme. Despite being one of the most common birth anomalies, the causes of clefting are unknown. Treatment involves a considerable burden of care from birth onwards, together with a variety of social and psychological challenges.

Objectives and ApproachOur aim is to create the infrastructure and resources necessary to gain important new knowledge that will advance our understanding of the causes of cleft lip/palate, inform treatment and improve the lives of people born with cleft; data linkage is a key aspect of this. There are challenges associated with linking to multiple data sources (NHS Digital, Cleft National Registry). However, using the consent obtained, we are also able to link directly to the participant’s medical notes held by their NHS cleft team; enabling us to access a variety of data, including free text.

ResultsThe study already collects social and demographic data via questionnaires and genetic data from biological samples. Data linkage enriches this but also enables us to validate and address missing data problems. However, linkage to external sources brings many challenges, including, governance, costs, access issues. By gaining direct access to cleft team medical notes these issues are significantly reduced and provide us with rich phenotype data that cannot be obtained elsewhere, for example, via ‘read codes’ within electronic medical records. By tailoring our own data collection tool we can collect specific cleft data to enhance the resource and allow for subtype analyses. This process can be repeated throughout the duration of this longitudinal study for subsequent data.

Conclusion/ImplicationsData linkage is a valuable resource but comes with many challenges. One route to overcome many of these issues is by accessing free text data directly from participants medical notes. The richness of these data allows for more in depth phenotypic analyses.
Determining Potentially Avoidable Emergency Medical Services (EMS) Transports: A Population Level Study Using Linked Administrative Data in Alberta Health Services (AHS)
Authors: Cai Ping , Vogelaar Gregory , Liss Kim , Quan Hude
Published: September 2018

IntroductionTraditionally Emergency Medical Services (EMS) transports patients to Emergency Departments (EDs). However, some patients might be appropriately managed in alternative settings outside the ED. A number of non-traditional EMS programs have evolved in Alberta, in an attempt to provide quality care through a community-based care model.

Objectives and ApproachThe project aimed to identify and quantify potentially avoidable EMS transports to EDs in Alberta.

We identified 911 responses by ground ambulance in Alberta between September 1, 2017 and December 31, 2017. Patients 18 years and over transported to EDs were linked to Alberta Provincial Registry for more accurate demographic Information, and linked to Long Term Care (LTC) and ED data to capture patient characteristics and frequency of potentially avoidable EMS transports to EDs, defined as the Canadian Triage and Acuity Scale (CTAS) Level IV and Level V in EDs not requiring inpatient admission.

ResultsWe identified 72,182 transports to EDs, of which 1 in 4 patients were rural residents. After excluding individuals<18 years and non-Alberta residents, we were able to match 58,137 of the 60,020 EMS transports to EDs (96.8%). Overall, 7,697 (13%) were triaged as less urgent with no hospital admission. Patients 65 years and over accounted for almost half (49%) of the transports in this cohort, 6% of which were for LTC clients. Percentage of potentially avoidable transports in LTC clients were similar to seniors living in the community (12%). Geographic visualization at the provincial level indicated variation across the province. In general, rural residents were more likely than urban residents to be transported to EDs with less urgent conditions (18% vs 12%).

Conclusion/ImplicationsThis is the first analysis exploring potentially avoidable EMS transports to EDs in Alberta, Canada, where a comprehensive, single source of EMS system data is currently available. The project suggests opportunities for future EMS research and policies focusing on enhancing community–based care.
Utilizing population-based clinical and administrative data to explore the relevance of frailty to cholinesterase inhibitor use and discontinuation at nursing home transition.
Authors: Maclagan Laura , Maxwell Colleen , Guan Jun , Campitelli Michael , Herrmann Nathan , Lapane Kate , Hogan David , Amuah Joseph , Seitz Dallas , Gill Sudeep , Bronskill Susan
Published: September 2018

IntroductionCholinesterase inhibitors (ChEIs) are medications used to treat cognitive symptoms associated with Alzheimer’s disease. Previous studies examining the determinants of continued use or withdrawal of ChEIs during the transition into a nursing home have lacked detailed clinical information needed to understand the range of factors associated with pharmacotherapeutic decision-making.

Objectives and ApproachPopulation-based clinical and administrative health databases were linked to examine patterns of ChEI use among 47,851 adults (aged 66+) with dementia newly admitted to nursing homes in Ontario between April 2011-March 2015. We examined whether resident frailty, among other factors, was associated with ChEI discontinuation in the following year. Frailty was calculated using a validated 72-item index derived from the Resident Assessment Instrument (RAI-MDS 2.0). Discontinuation was defined as a 30-day period when no dispensations occurred and no supply of ChEI was available. Subdistribution hazard models estimated the association between resident characteristics and discontinuation, accounting for competing risk of death.

ResultsOver one-third (36.7%) of residents were receiving a ChEI at admission and this proportion was lower among those defined as frail (33.6%) vs. non-frail (40.7%) at admission. Among those on a ChEI at admission, 82.3% continued use and 17.7% discontinued during the following year. After accounting for resident characteristics, ChEI type and previous use, the incidence of discontinuation was 15% higher in frail residents vs. non-frail residents (hazard ratio (HR)= 1.15, 95\% confidence interval (CI) [1.01,1.30]). Residents with severe aggressive behaviours (HR=1.82, 95% CI [1.60, 2.07]), and higher levels of cognitive impairment (HR=1.29, 95% CI [1.10, 1.51]) were more likely to discontinue. Residents aged 85+ (HR=0.69, 95% CI [0.61, 0.77]) and those who were widowed (HR=0.84, 95% CI [0.77, 0.91]) were less likely to discontinue.

Conclusion/ImplicationsMost residents who entered on a ChEI continued treatment during follow-up. The availability of linked clinical and administrative data allowed for a novel exploration of predictors of ChEI discontinuation. Frailty, severity of cognitive impairment and aggressive behaviours were associated with ChEI discontinuation; whereas selected sociodemographic factors predicted continued use.
Data Linkage for Optimizing Rectal Cancer Care in Alberta
Authors: Le Quynh , Shack Lorraine , Elwi Adam , Coutinho Francesca , Rochon Ryan , Mcmullen Todd , Buie Donald
Published: September 2018

IntroductionDespite good overall care in Alberta Health Services the local recurrence rates are higher than what is accepted as standard of care for rectal cancer treatment. There are variations in pre-operative staging, application of best surgical techniques and pathological grading, use of neoadjuvant and adjuvant therapies, and in clinical reporting.

Objectives and ApproachWe aimed at reducing the variations through the design and implementation of a provincial clinical pathway for rectal cancer by 2018. Our approaches included: 1) multidisciplinary tumor board consultation together with physician education sessions in reviewing standards of care and quality metrics; 2) data linkage and analysis based on chart reviews and extraction of data from Alberta Cancer Registry; and 3) production of provincial reports and individual feedbacks to physicians. CancerControl Alberta and Cancer Strategic Clinical Network collaborated in the linkage and analysis of data as well as mobilization oncology physicians to the initiative.

ResultsA review of a set of metrics for producing individual and provincial feedback reports to rectal cancer physicians. The set has 24 key quality metrics includes five, four, eight, and six metrics for radiologists, pathologists, oncologists, and surgeons respectively. Thirty-two surgeons have received individual physician feedback reports. Feedback reports for radiologist, pathologist and oncologist are being finalized with input from key opinion leaders in each physician group. Key impacts to the quality of rectal cancer diagnosis, treatment, and care between 2013 and 2015 include increases in use of rectal cancer pre-operative MRIs for curative resections (+23%), completeness of synoptic MRI reports for pre-operative MRIs (+21%), grade 3 TME of curative resections (+4%), and pathologic reporting of TME assessments (+2%).

Conclusion/ImplicationsPhysician feedback report system will enable the Alberta rectal cancer community to sustain the results and address strategies to continuously enhance the quality of rectal cancer care and survival. We recommend ongoing annual dissemination of feedback reports to support continuous improvement of rectal cancer care.
Depressive episodes, weight change, and incident diabetes in a Canadian community sample
Authors: Graham Eva , Schmitz Norbert , Rosella Laura
Published: September 2018

IntroductionDepression has consistently been associated with an increased risk of diabetes in recent meta-analyses. However, depression is a highly heterogeneous construct and people with specific symptoms of depression, such as weight gain and increased sleep, may be at a higher risk of diabetes.

Objectives and ApproachThis work will compare incident diabetes in Ontario adults with recent depressive episodes that included symptoms of weight gain, weight loss, or no weight change and in those with no recent depressive episodes. Participants will be drawn from several waves of the Canadian Community Health Survey and the National Population Health Survey. Past 12-month depressive episodes and weight change during most recent or worst episodes was measured using the CIDI/CIDI short form. Time to incident diabetes will be ascertained through linkage with the Ontario Diabetes Database. Cox proportional hazards regression will assess diabetes incidence by depression and weight change characteristics.

ResultsThis study will include 106 084 Ontario adults who participated in the Canadian Community Health Survey (2000/2001, 2002, 2003, 2012) and the National Population Health Survey (1996). Follow-up time will range from 4 to 19 years (until March 2017). Study covariates will include demographic and lifestyle factors, comorbidities, and health care use and will be extracted from the surveys above and from administrative health data. The dataset for this study is currently being prepared by the Institute for Clinical Evaluative Sciences (ICES) and the findings of this analysis will be presented at this conference.

Conclusion/ImplicationsThe results of this work will provide insight into who, among those with depression, is at highest risk of new-onset diabetes. These results will be relevant to the development of both personalized and population-level diabetes screening and prevention strategies.
Using administrative data to examine government service transitions of children, youth and young adults in Alberta, Canada
Authors: Lamba Navjot , Jia Ruiting , Bhatt Hitesh
Published: September 2018

IntroductionA main goal of policy makers is to understand various transition pathways between services to optimize program design and to achieve successful outcomes, for example, securing stable income or having access to disability supports.

Objectives and ApproachUsing linked administrative data (between 2006 and 2011), this study examines two types of program transition pathways: 1) Toward understanding who may be at risk for relying on income support, we profile Albertans transitioning from an income support training program to a program providing income support but no training, and 2) Toward understanding service delivery from child/youth to adult disability programs, we profile students receiving child/youth disability services, but who did not transition into an adult disabilities program. The socio-demographic characteristics and government service use of these students, including health and education-related services, were examined.

ResultsFirst, among Albertans who transitioned from an income support training program to one in which only income support was provided: 57% were female; 72% were living in low socio-economic neighbourhoods; 14% were high cost health service users; 20% received mental health services; 30% received an injury/harm diagnosis; and 12% were involved in corrections. Second, among children/youth who received child disability services but did not transition to an adult disability program, lower than expected proportions received Assured Income for the Severely Handicapped (45%) and Income Support (14%), while higher than expected proportions had criminal offences (17%).

Conclusion/ImplicationsProfiles produced from linked data helps Alberta government to understand clients’ program transitions which allows for: 1) the identification of Albertans requiring supports for securing employment that reduce or eliminate the need for income support, and 2) improvements in service delivery to individuals transitioning from child/youth to adult disability programs.
Using Planning Data to Monitor the Health of Communities - The Healthy Development: Monitoring and Mapping Project
Authors: Mukhtar Maria , Guillette David
Published: September 2018

IntroductionThe impact of the built environment on health and chronic disease outcomes is increasingly being recognized. As Public Health develops interventions to transform the health-promoting potential of built environments, effective monitoring and evaluation will require the creation and baseline measurement of key health-promoting urban elements.

Objectives and ApproachThe Healthy Development Monitoring Project aims to assess health-promoting aspects of the existing built environment across the Region of Peel, a large region of 1.382 million people in Southern Ontario comprised of three local municipalities (the Cities of Mississauga, Brampton and Town of Caledon).

Project objectives include:

Produce evidence-informed indicators to measure health-promoting built form elements at a neighbourhood-scale across the region

Produce a GIS-based visualization that incorporates these indicators into a single model to measure their combined impact on the built form

Reproduce these indicators over time to monitor for changes in Peel’s built form

ResultsThe resulting Healthy Development Monitoring Map (HDMM) is an interactive online mapping tool that includes twenty built form indicators characterizing the region’s built environment, including: density, service proximity, land use mix, street connectivity, streetscape characteristics and efficient parking. These indicators were created through extensive cross-sectoral collaboration with regional and municipal staff in land-use and policy planning, transportation, internal data centers and academic institutions. This collaborative approach enabled the linking of data sets from land-use planning, urban design and transportation to allow the health-promoting potential of existing built environment conditions to be objectively described. The HDMM demonstrates considerable progress in producing precise, neighbourhood-level built environment indicators at a regional scale by integrating census and local data into a comprehensive set of empirically-derived measures.

Conclusion/ImplicationsThe HDMM is a novel approach to quantifying a social determinant of health through collaborative data acquisition and analysis. The HDMM benefits public health, planning and non-governmental decision-makers by creating a holistic presentation of key infrastructure and design elements that contribute to healthier urban environments.