bluuebunny/crossref_metadata_2025 huggingface dataset:
Gaining knowledge of Ontario’s community mental health and addictions system: linking community-based health services data with administrative health data in Toronto, Ontario, Canada
Authors: Kurdyak Paul , Amartey Abigail , Yang Julie , Liadsky Daniel , Solomon Rachel , Carter Stephanie
Published: September 2018

IntroductionIn most developed countries, a significant amount of mental health and addictions care occurs in community settings. Data reflecting populations served by community-based mental health and addictions providers and the types of services provided are not available, resulting in an incomplete reflection of the entire mental health and addictions system within existing administrative data.

Objectives and ApproachThe Community Business Intelligence (CBI) initiative is a data collection project that captures information on adults receiving community-based mental health, addictions, and support services in Toronto Central Local Health Integration Network (LHIN), located in Ontario, Canada. Leveraging administrative health data and data linkage capacity at the Institute for Clinical Evaluative Sciences (ICES), along with engagement of external stakeholders knowledgeable of CBI and the community health sector, we linked the 2015/16 CBI dataset to administrative health data. Demographic characteristics, health-service utilization, primary care attachment, and 30-day emergency department (ED) revisits were calculated for individuals accessing community health services.

ResultsThere was an 80.8% linkage rate, of which 36.9% linked deterministically via health card number, while 43.9% linked probabilistically. After study exclusions, 37,688 individuals in the CBI dataset used community health services between April 2015 and March 2016. Compared to Toronto Central LHIN, a greater proportion in the CBI dataset were female, older than 65 years of age, and living in a low income neighbourhood. Furthermore, 95.5%of individuals had at least one outpatient physician visit, 51.3%had at least one ED visit, and 21.7%had at least one hospitalization in the past year. Few individuals in the CBI dataset were without primary care attachment (4.5%); however, a larger proportion had a 30-day ED revisit, particularly those receiving community addictions services (19%).

Conclusion/ImplicationsThe availability of community health services data in the CBI dataset and its successful linkage to the administrative health data held at ICES identified health service intersections and outcomes that were previously unknown. This linkage project demonstrates a successful framework for sector-wide performance measurement to address a critical infrastructure gap.
SAGE: supporting secondary data analysis and expediting knowledge mobilization with linked administrative, service delivery, and research data
Authors: Zhang Yunqi , Lloyd-Jones Hannah , Jagodzinski Robert , Barbosa Poliana , Lau Jason , Cui Xinjie
Published: September 2018

IntroductionThe cultural revolution of data sharing is becoming a global movement. It allows for scientific replication and verification of research results, avoiding research duplication, and enabling greater transparency and knowledge mobilization with a relatively low cost. However, privacy protection and data security are critical concerns for human-subject related data sharing.

Objectives and ApproachIn order to facilitate data sharing and engage various stakeholders to better inform policy and practice while protecting privacy, SAGE (Secondary Analysis to Generate Evidence) was established by PolicyWise for Children and Families. It is a collaborative data repository platform that connects stakeholders through secondary use of data. SAGE was built to link, manage, and share research data, community service data, and administrative data related to health and social well-being. Governance and technical processes are in place to ensure that data depositors are involved in decision-making, and data accessed by collaborators are secured and re-identification risks assessed.

ResultsSAGE has been in operation for over a year. Through engagement with the research and non-profit communities, SAGE now offers ten data assets. Discovery is facilitated through well-documented metadata through NADA and Dataverse. Six new collaborative projects have been initiated through SAGE. SAGE is working actively with local non-profits to liberate data to generate evidence and collaborate with each other on common goals. SAGE has helped these organizations understand the legal and legislative barriers to data sharing, and build the technical capacity to further this goal. Discussions are underway with Alberta public entities on how SAGE can support the linkage and governance processes in the use of administrative data.

Conclusion/ImplicationsSAGE is putting the governance processes and security practices in place to fill a need for a facilitated data sharing model for sensitive data. SAGE is supporting the cultural shift towards data sharing and reuse by fostering trust and collaboration among researchers, non-profit and government ministries.
Education and social service use patterns of children and youth with neurodevelopmental disorders
Authors: Jia Ruiting , Werk Christine , O'Brien Daniel , Jagodzinski Robert , Piatt Carley
Published: September 2018

IntroductionThis study uses linked administrative data to identify Albertan children and youth (aged 0 to 25 years) with Autism Spectrum Disorder (ASD), Cerebral Palsy (CP) or Fetal Alcohol Spectrum Disorder (FASD), and to examine their government service use patterns from 2005/06 to 2010/11.

Objectives and ApproachThe analysis looks at whether children with ASD, CP and FASD have similar government service use patterns and how their service use patterns changed over time. Six Government of Alberta ministries’ data were linked (Health, Justice, Education, Advanced Education, Children’s Services and Community and Social Services). Individuals were defined as having ASD, CP or FASD if, at any point during the study period, they had a diagnostic code for one of three conditions (ASD, CP or FASD) from a health service (i.e., physician visits, or emergency room visits, or hospitalizations), or accessed disability support programs for ASD, CP or FASD.

ResultsThe results showed different service use patterns for the three conditions: (1) a higher proportion of children with ASD were students with special needs compared to children with FASD and CP; (2) a lower proportion of children with FASD received FSCD services compared to children with ASD and CP; (3) a higher proportion of children with FASD were involved in the Child Intervention system and were Income Support recipients compared to children with ASD and CP. Moreover, the study showed that there was a decrease in accessing services and programming from Persons with Development Disabilities (PDD) for young Albertans with ASD, CP and FASD from 2005/06 to 2010/11. In contrast, the use of another adult disability program that provides only financial assistance, Assured Income for Severely Handicapped, increased over time.

Conclusion/ImplicationsThe use of population-based linked administrative data allows a comprehensive and comparative study for government service use patterns. The findings have implications for cross-ministry policy and program development, resource allocation, and service coordination and delivery to young Albertans with ASD, CP and FASD.
Duration of maternal mental health-related outcomes after an infant’s death: A retrospective matched-cohort study using linkable administrative data
Authors: Wall-Wieler Elizabeth , Roos Leslie , Bolton James
Published: September 2018

IntroductionMothers have increased mental illness such as anxiety and depression after the death of a child.

Objectives and ApproachThe mental health of all mothers who experience the death of an infant (< 1 years old) in Manitoba, Canada between April 1, 1999, and March 31, 2011 (n = 534) is examined in the four years leading up to, and the four years following, the death of their child to determine how long increased levels of mental-health realted outcomes remain elevated after the death of an infant. Mental

health-related outcomes of these mothers are compared with a matched (3:1) cohort of mothers who did not experience the death of a child (n = 1,602).

ResultsCompared with mothers who did not experience the death of a child, mothers experiencing this event had higher rates of anxiety diagnoses and psychotropic prescriptions starting 6 months before the death. Elevated rates of anxiety continued for the first year and elevated rates of psychotropic prescriptions continued for six months after the death of the child. Mothers who experienced the death of a child had higher rates of depression diagnoses in the year after the death. Relative rates (RR) of depression (RR = 4.94), anxiety (RR = 2.21), and psychotropic medication use (RR = 3.18) were highest in the six months after the child’s death.

Conclusion/ImplicationsElevated rates of depression, anxiety, and psychotropic medication use after the death of a child end within one year of the child’s death.
The Cycle of Child Protection Services Involvement: A Cohort Study of Adolescent Mothers
Authors: Wall-Wieler Elizabeth , Brownell Marni , Singal Deepa , Nickel Nathan , Roos Leslie
Published: September 2018

IntroductionAdolescent girls in care of child protection services are more likely to become pregnant than adolescent girls not in care, and mothers who were in care are more likely to have their children placed in care.

Objectives and ApproachLinkable administrative data were used to determine whether adolescent mothers in care are at greater risk of having their child placed in care before age two. A population-based cohort of adolescent mothers whose first child was born in Manitoba, Canada between April 1, 1998, and March 31, 2013 (n = 5,942) was used. Adjusted odds ratios (AOR) of having that first child taken into care before their second birthday were compared between mothers who were in care (n = 576) and mothers who were not in care (n = 5, 366) at the birth of their child using logistic regression models.

ResultsAdolescent mothers who were in care had greater odds of having their child taken into care before the child’s second birthday (AOR = 7.53; 95% CI = 6.19-9.14). Specifically, their children had higher odds of being taken into care in their first week of life (AOR = 11.64; 95% CI = 8.83-15.34), between one week and their first birthday (AOR = 3.63; 95% CI = 2.79-4.71)., and between their first and second birthday (AOR = 2.21; 95% CI = 1.53-3.19).

Conclusion/ImplicationsFindings support an intergenerational cycle of involvement with child protection services. More and better services are required for adolescent mothers who give birth while in care of child protection services.
International Journal Population Data Science: development and future directions
Authors: Jones Kerina , McGrail Kim , Schnell Rainer , Coeli Claudia , Lee Stephanie
Published: September 2018

Background and rationaleThe International Journal of Population Data Science (IJPDS) was launched in April 2017. It is an electronic, open-access, peer reviewed journal, publishing articles on all aspects of research, development and evaluation connected with about people and populations. It represents an internationally unique vehicle for publishing a broader range of articles than most journals in related fields by including in scope: working papers, methodological developments, informative reports, and other pieces of interest, in addition to more traditional manuscripts. As such, it provides a focal point (and a home) for all areas of Population Data Science. The creation of the IJPDS was inspired by the IPDLN, and places great importance on the viewpoints and activities of Network members to guide the development of the journal.

ObjectiveInformation dissemination – stakeholder consultation – informing future directionsThe main objective of this collaborative session is to present the audience with an up-to-date summary of journal strategy and progress to date, and to use this forum to gain further viewpoints to better target future directions of the journal to meet the needs of those working in Population Data Science.

PlanThe session will comprise 5 sections:

A short presentation overviewing the journal, its historical origins, its remit and relationship to the IPDLN and Network members. Primary objectives of the journal and performance metrics from the first 18 months of operation will be presented.

Gauging audience opinion on:

What they like/dislike about the journal

What is working well/not so well

Feedback and discussion on the survey results

Discussions with audience in groups, each focusing on some/all of the following questions, and a question of their own choice if something arises:

How can we make IJPDS articles more accessible to the general reader/non-specialist researcher?Example options: short video/audio; general reader summaries; infographics; other

How can we increase the reach of, and interest in, the journal?

Open answers

What would you suggest as a special issue?These topics for group discussion will be posed to the session audience with the aim of using the feedback in defining our priorities for the coming year.

Feedback and summing up

The groups will be asked to give their feedback.

Feedback from the discussions and voting will be used to inform the next steps for IJPDS.

Facilitators

Kerina Jones, Founding Editor-in-Chief, Swansea University, Wales 

Kim McGrail, Deputy Editor, University of British Columbia, Canada

Claudia Medina Coeli, Editorial Board member, Rio de Janeiro Federal University, Brazil

Rainer Schnell, Editorial Board member, University of Duisburg-Essen, Germany

Stephanie Lee, Journal Director of Operations, Swansea University, Wales
Is Participation in Out-of-School Programs Linked to Students’ Health, Educational and Social Outcomes?
Authors: Enns Jennifer , Brownell Marni , Katz Alan , Nickel Nathan , Nie Yao
Published: September 2018

IntroductionOut-of-school programs for grade K-12 students support healthy behaviours, boost academic achievement, and strengthen social networks. The Boys and Girls Clubs of Winnipeg (BGCW) have been active for 40+ years; however, little is known about how participating in their programs influences students’ short- and long-term health, educational and social outcomes.

Objectives and ApproachWe are investigating the association between participation in BGCW out-of-school programs using the individual-level data held in the population-based Manitoba Population Research Data Repository at the Manitoba Centre for Health Policy (MCHP). Data on BGCW program participation for children born 1987-2010 was linked with administrative records from the healthcare system, education system, and social services. The comparison group of non-participants was matched on age, sex, 3-digit postal code and school division. Outcomes of interest include health services use, teen pregnancy, grade repetition, high school graduation, enrollment in post-secondary institutions, receipt of income assistance, and involvement with the justice system.

ResultsWe conducted analyses of children (K-8) attending the Community Schools Investigator (CSI) summer enrichment program, an academic and recreational program that aims to combat learning loss for children in low-income neighbourhoods. After one summer of CSI, participants (n=970) were significantly more likely to repeat a grade than the matched comparison group (n=783) (5.4% CSI students repeated a grade [95% CI 3.9, 6.8] vs 2.76% comparison students [95% CI 2.20, 3.32]). However, the likelihood of CSI students repeating a grade dropped to the level of the comparison group after two or more years of participation in CSI (2.91% CSI students repeated a grade [95% CI 1.26, 4.56]). Ongoing analyses are examining how participating in CSI and other BGCW programs is linked to health and social outcomes.

Conclusion/ImplicationsOur findings suggest that engagement in a BGCW out-of-school summer program contributes to better educational outcomes for low-income students. Using the information-rich Data Repository at MCHP, we can examine additional outcomes across multiple sectors to demonstrate how out-of-school programs help young people achieve their full developmental potential.
Repeat pregnancy during adolescence and educational level in Brazil.
Authors: Domenico Juliana , Guimarães Patricia , Guillen Luis Carlos , Camargo Kenneth , Sobrino Rejane , Coeli Claudia
Published: September 2018

IntroductionRepeat pregnancy among adolescents is associated with preexisting disadvantages related to the adolescent’s social and cultural background. In Brazil, there is a lack of studies that evaluate repeat pregnancy during the entire adolescence period. Record linkage is a useful tool for following adolescents after the birth of their first child.

Objectives and ApproachTo estimate pregnancy repetition during adolescence and to evaluate the effect of inadequate schooling during the first pregnancy on repetition in a cohort of adolescents in Rio de Janeiro City who had their first live-born child between the ages of 15 and 18. We carried out a non-concurrent cohort study using probabilistic record linkage techniques. The association between mother’s schooling and at least one repeat pregnancy during adolescence was evaluated through risk ratios adjusted for mother’s age, estimated using generalized linear models with binomial distribution and Neperian logarithm function. We also evaluated the interdelivery interval.

Results9,285 adolescents were included in the study. Of these, 29.4% had inadequate schooling at the time their first child was born and 9.9% had at least on repeat pregnancy during adolescence. The risk of repeat pregnancy was significantly higher in the group with inadequate schooling (adjusted RR=1.19; 95% CI= 1.05-1.34), when compared with the group with adequate schooling. Half of the teenage mothers had an interval between the first and the second pregnancy of less than 24 months, with data showing no statistically significant difference between the two groups with respect to adequacy of mother’s schooling. Adolescents with more than one repeat pregnancy had the worst prenatal and labor care indicators, as well as the highest incidence of premature births.

Conclusion/ImplicationsInadequate schooling at the time of the first child’s birth increases the risk of repeat pregnancies during adolescence. Additionally, inadequate schooling and a history of repeat pregnancies during adolescence are markers of populations that accumulate disadvantages in access to care and in pregnancy outcomes.
Early Childhood Respiratory Morbidity and Health Services Utilization in Children Born Preterm or Small and Large for Gestational Age
Authors: Serrano-Lomelin Jesus , Chari Radha , Hicks Anne , Johnson David , Crawford Susan , Bakal Jeff , Osornio-Vargas Alvaro , Ospina Maria
Published: September 2018

IntroductionAlterations in duration of gestation and fetal growth such as preterm birth (PTB) or small and large for gestational age (SGA, LGA) have long-term consequences on respiratory health. The risk of health services use for respiratory conditions in infants born PTB, SGA or LGA in Canada needs to be evaluated.

Objectives and ApproachWe evaluated the association between PTB, SGA and LGA and health services utilization for respiratory diseases in early childhood. We linked three administrative health databases to identify all singleton live births in Alberta between 2005-2010. We obtained data on the number of hospital admissions and emergency department (ED) visits in the first five years of life for acute upper respiratory infections, acute lower respiratory infections, wheezing disorders, bronchopulmonary dysplasia, and influenza and pneumonia. Odds ratios (OR) of health services use for PTB, SGA, LGA were calculated adjusting for important covariates (e.g., maternal age, sex, socioeconomic status, total antepartum risk score).

ResultsThe cohort contained 206,994 infants of whom 9.1% were PTB, 8.5% were SGA and 9.4% were LGA. Babies born prematurely (PTB) were more likely to have a respiratory disease in the first five years of life than babies experienced fetal growth alterations (SGA or LGA). PTB increased significantly the odds of acute lower respiratory infections by 30 to 90%, of wheezing disorders by 40 to 70%, of influenza and pneumonia by 30 to 60%, and of acute upper respiratory infections by 10 to 50%. By contrast, SGA increased the odds of bronchopulmonary dysplasia by 3 to 300%, and LGA increased the odds of acute upper respiratory infections by 11 to 18% and of acute lower respiratory infections by 8 to 11%.

Conclusion/ImplicationsPrematurity and alterations in fetal growth are associated with increased hospital and ED admissions in early childhood. The patterns differ for PTB, SGA, and LGA. Linkage of administrative health data provides useful epidemiological evidence to inform the burden of early childhood respiratory diseases resulting from adverse birth outcomes.
Use of cross-sectoral data linkage to predict high-rate offenders in Western Australia
Authors: Ferrante Anna , Randall Sean , Boyd James , Tubex Hilde , Morgan Frank
Published: September 2018

IntroductionStudies have repeatedly found that a small number of offenders account for a disproportionate amount of crime. High-rate, persistent offenders (so-called ‘prolific’ offenders) have a major impact on local crime rates and public perceptions of safety, and place a substantial financial and social burden on communities.

Objectives and ApproachUsing population-level administrative data, our study identifies ‘prolific’ offenders in WA and describes their demographic and crime profiles. The official criminal records of all offenders born in WA between 1980 and 1995 were linked to administrative records from health, education and child protection databases (followed to 2005). Linked data on families (parents and siblings) were also included. Using this information, the study identified factors that distinguish between prolific and non-prolific offenders. The study also examined whether correlates of prolific offending were similar between a) male and female offenders, and b) Indigenous and non-Indigenous offenders.

ResultsClusters of offenders exhibiting a high-rate and persistent pattern of offending over the life-course were identified. These ‘prolific’ offenders accounted for a disproportionate amount of crime and criminal justice contacts:

8\% of female offenders accounted for 41% of female contacts;

3\% of male offenders made up 21% of male contacts;

9\% of Indigenous offenders made up 37% of Indigenous contacts;

7\% of non-Indigenous offenders made up 36% of non-Indigenous contacts.

Being the subject of a maltreatment allegation, being placed in out-of-home care, and having a serious mental health condition before the age of 18 increased the odds of being a prolific offender. Two criminogenic factors - early onset of offending (contact before age 12) and early violence - emerged as the most significant predictors.

Conclusion/ImplicationsChild protection and mental health services have much of the information needed to target early prevention, while criminal justice agencies are well-placed to apply crime reduction strategies through the targeting of early-onset/early-violent offenders. A combined approach is likely to have the greatest effect on reducing impact of prolific offending.
In Sickness and In Health: Effects of Cardiovascular Health Shocks on Spouses’ Work and Earnings
Authors: Fransoo Randy
Published: September 2018

IntroductionA severe health shock can threaten a patient’s life and alter the lives of their family. Spouses often provide care, and may change their work situation, affecting family income. This could mean less work to allow for more caregiving, or more work to make up for the patient’s lower income.

Objectives and ApproachWe used the Canadian Hospital and Taxation Database to quantify the impact on workforce participation and changes in earnings among spouses of working-age Canadians who survived a heart attack, cardiac arrest, or stroke. All 40-61 year-olds who experienced a health shock between 2005 and 2010, and survived for at least 3 years, were included, along with their spouses. We use 15 variables to match case spouses with up to 5 (weighted) potential control spouses. The main outcome was Total earnings, which included the sum of wages and salaries, net self-employment income and other employment income, normalized to 2012 Cdn dollars.

ResultsOur analysis included 11,208 spouses of heart attack patients, 622 spouses of cardiac arrest patients, and 2,228 spouses of stroke patients, matched with spouses in the control group. For all three health shocks, we found no significant difference in the distribution of changes in earnings between cases and matched controls (p=0.30 for heart attack; p=0.72 for cardiac arrest and p=0.27 for stroke). We also found no difference in levels of working status (ie being employed). We found mixed impacts by spouses’ sex, age, and pre-event earnings for heart attack and stroke patients. These results are consistent with previous findings, but drill deeper by analyzing the distributions of changes in earnings among spouses of patients experiencing health shocks.

Conclusion/ImplicationsDespite known decreases in work and earnings among patients experiencing heart attack, cardiac arrest, or stroke, the proportion of spouses whose work and earnings were increased, decreased, or unchanged was the same as for control spouses. This combination implies a significant reduction in family income after serious health events.
ICD coding training worldwide
Authors: Varela Lucia Otero , Eastwood Catherine , Mathur Pallavi , Quan Hude
Published: September 2018

IntroductionThe International Classification of Diseases (ICD) is globally used for coding morbidity statistics, however, its use, as well as the training provided to individuals assigning codes, varies greatly across countries.

Objectives and ApproachThe goal is to understand the quality of coder training worldwide. After an in-depth grey and academic literature review, an online survey was created to poll the 194 World Health Organization (WHO) member countries. Questions focused on hospital data collection systems and the training provided to the coding professionals. The survey was distributed to potential participants that meet the specific criteria, as well as to organizations specialized in the topic, such as WHO-CC (WHO Collaborating Centers) and IFHIMA (International Federation of Health Information Management Association), to be forwarded to their representatives. Answers will be analyzed using descriptive statistics.

ResultsThis ongoing project aims to capture responses from as many countries as possible, and thus far, data from 45 respondents from 20 different countries has been collected. Initial results reveal worldwide use of ICD, with variations in the maximum allowable coding fields for diagnoses and interventions. Coding specialists are the main personnel assigning codes, followed by physicians, and although minimum training is not mandatory in all countries (Sweden, Italy, Germany and Thailand), in those where it is, college/university degree is the most common requirement. Coding certificates most frequently entail passing a certification exam. Continuing education for coders is offered in all countries except one (Nigeria). Once more information is available, countries will be ranked and those depicting a better performance will be highlighted.

Conclusion/ImplicationsThese survey data will establish the current state of ICD use and coding training internationally, which will ultimately be valuable to the WHO for the promotion of ICD and the rollout of ICD-11, for better international comparisons of health data, and for further research on how to improve ICD coding.
Multimorbidity and access to social Care: exploiting emerging administrative data sources in Scotland.
Authors: Henderson David , Bailey Nick , McCowan Colin , Mercer Stewart
Published: September 2018

IntroductionIntegration of health and social care services is a potential solution to improving care despite budgetary constraints and increased demand for services. Little is known about how having two-or-more long-term conditions (multimorbidity) and socioeconomic status affect social care use, or how all these factors affect unscheduled health care use.

Objectives and ApproachThe project aims to describe the demographic, geographic, and socioeconomic differences in the receipt of social care for over 65s in Scotland and how multimorbidity status influences amounts of social care received. Additional analyses will consider the influence receipt of social care has on use of unscheduled health care services and mortality.

Social Care Survey (SCS) data collected by the Scottish Government is linked to administrative health and mortality records. Linkage includes; prescribing information service and USC data which records episodes of A & E attendance, emergency admission to hospital, GP out-of-hours attendance, Scottish Ambulance Service use, and NHS24 contact

ResultsThe cohort includes 1.1million individuals over the age of 65 (54.8% Female), of which 274,011 (24.2%) people died during the study period.

The linkage rate of the SCS to records with a CHI number in the National Records of Scotland population spine was 90.5%, with one local authority removed for very low linkage rates and the remaining 31 with rates between 76.7% and 97.9%.

As of February 2018, all requested data has been transferred to the National Safe Haven and data cleaning and analysis has begun. Significant results are expected to have been produced by August 2018.

Conclusion/ImplicationsThis research will help understand if receipt of social care is equitably distributed among the population of Scotland after allowing for multimorbidity and socioeconomic status. Understanding the influence health status has on social care receipt and the influence social care has on unscheduled healthcare use has important implications for policy development.
Challenges and Facilitating Factors in Accessing Administrative Data for Research: Insights from the Children's Health Profile and Trajectory Initiative in NB and PEI
Authors: Sparks Sarah , Tranchant Carole , Malinski Patricia , Montelpare William , Bélanger Mathieu , Miedema Baukje , Bouchard Danielle , Sénéchal Martin , Jose Caroline , Barre Ed , Rossiter Misty , Bryanton Janet , Holland Margaret , McDonald Ted
Published: September 2018

IntroductionAdministrative health data (AHD) are typically not analyzed to produce evidence on the effectiveness and limitations of primary prevention programs and strategies. The value of AHD for answering research questions is generally recognized, but the challenges in accessing and using these data for research are not always know and documented.

Objectives and ApproachTo identify and advise on the facilitating factors and challenges of accessing select AHD in New Brunswick (NB) and Prince Edward Island (PEI) for the purpose of creating an intra-provincial Child Health Profile (CHP) and population-based birth cohort database, using existing AHD not been previously linked. This research is a cross-jurisdictional collaboration between NB and PEI with an integrated knowledge translation (iKT) approach that adheres to each province’s unique data policies, data procedures, and data governance. The collaboration involves people in various roles: provincial government managers, policy-makers, data custodians, health practitioners, citizens, community organizations, in addition to academic researchers.

ResultsAccess to select AHD required considerable preparation, cross province coordination, and ongoing discussions over many months. Key facilitators were the NB Institute for Research, Data and Training, a newly established data repository that holds provincial AHD in NB, and the provincial health authority in PEI. In NB, the existence of well-documented protocols and support from designated personnel (including trained data analysts) were assets facilitating data access through the data repository. In PEI, REB approval was obtained more rapidly but challenges occurred in subsequent stages of data access directly through the health authority. This research supports the empowerment of stakeholders such as Public Health and researchers who are trying to leverage ‘big data’ resources to address research and practice questions regarding children’s health.

Conclusion/ImplicationsAccessing AHD for the project was facilitated by the existence of well-documented protocols and other specialized resources that help streamline the process of data sharing while ensuring data privacy and security. Continued relationship-building among stakeholders is needed to facilitate and maximize the use of existing AHD in NB and PEI.
Extracting primary care records for prostate cancer patients in the CHHiP multicentre randomised control trial: A healthcare data linkage study
Authors: Lemanska Agnieszka , Byford Rachel C , Cruickshank Clare , Dearnaley David P , Ferreira Filipa , Griffin Clare , Hall Emma , Hinton William , De Lusignan Simon , Sherlock Julian , Tomkinson Keeley , Van Vlymen Jeremy , Faithfull Sara
Published: September 2018

IntroductionThe aim is to investigate the effect of cardiovascular and diabetes comorbidities on radiotherapy-related side-effects in prostate cancer. Previous research suggests that comorbidities increase the risk of side-effects, but some cardiovascular medications may reduce symptoms by protecting against radiation damage. The evidence is inconclusive and mechanisms are not fully understood.

ObjectiveTo explore whether routine primary care data can supplement clinical trial data in evaluating the impact of comorbidities and prescription medications on patient outcomes.

ApproachThe CHHiP radiotherapy trial (CRUK/06/16) recruited 3,216 prostate cancer patients from 71 centres in UK, Ireland, Switzerland, and New Zealand between 2002 and 2011. Baseline comorbidity and radiotherapy-related side-effects over time were recorded. This was linked to computerised medical records (CMRs) from the Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC) database. RCGP RSC is a network of 192 English general practices with over 2 million patients (2.8% of the population).

ResultsThe English population of CHHiP patients (N=2811) was used. 120 CMRs were linked, which exceeded the estimation of 79 linked records. However, six CMRs showed no evidence of regular GP care and a further eight patients were not recruited into the CHHiP trial until after they had de-registered from an RCGP RSC practice.

Information on cardiovascular and diabetes comorbidities was extracted for 106 patients. The mean age was 69±7 years, representative of the CHHiP population. From the CMRs, 23 (22%) patients had diabetes and 47 (44%) had hypertension including 37 (35%) who took angiotensin converting enzyme (ACE) inhibitors (medications lowering blood pressure). In addition, 44 (41%) patients took aspirin, 65 (61%) statins (lowering blood lipids) and 14 (13%) took metformin (lowering blood sugar levels). 

Conclusion/ImplicationsThe small sample limits statistical analysis. However, a clinical trial was successfully linked to GP data to determine comorbidities and medications of patients. This will serve as a pilot for further research. The advantage of data linkage is that it may provide a mechanism for long-term follow-up of radiotherapy-related side-effects.
Approaches to big data analysis of interface pressure measurements from continuous pressure imaging technology
Authors: Peng Mingkai , Ocampo Wrechelle , Southern Danielle , Baylis Barry , Hogan David , Conly John , Stelfox Thomas , Kaufman Jaime , Ghali William , Ho Chester
Published: September 2018

IntroductionOver 4.5 TB of data will be collected in a randomized clinical trial assessing continuous pressure imaging technology in reducing pressure injuries. To permit efficient analysis we examined different approaches to generating a reduced representation of the data that still produced similar analytical results to the full data set.

Objectives and ApproachOur primary objective was to develop an approach for reducing the pressure data to a manageable size, without loss of information. Frame by frame analysis of excluded participant imaging data allows us to identify changes in patient position. We explored different sampling frequencies (q5, 30, 60, 120, \& 240 seconds) for analysis, coalesced frames with periods of stillness, and used correlation coefficients as a measure of similarity between adjacent frames to identify patient position changes. Heat maps and plots were used to evaluate the performance characteristics and usefulness of different sampling frequencies and correlation coefficients to compress the data.

ResultsA sampling frequency q60 seconds provided reasonable representation of changes in interface pressure over time. This translates to using only 1.7\% of the collected data in our analyses. When the threshold of correlation coefficient was set at 0.99 for coalescing the information based on position changes, then there was a maximum of 80 position changes detected. Therefore, approximately 160 frames q24 hours is sufficient to represent pressure states of participants at high risk of developing pressure injuries. In total we would require 480 frames (160*3) from 72 hours of collected data for our analyses without loss of position changes and pressure information. This represents approximately 0.185\% of the data collected.

Conclusion/ImplicationsDecreasing the sampling frequency significantly reduced our data size without compromising resolution, while the use of correlation coefficients was effective at coalescing the continuous pressure imaging data. These methods of data reduction may be applicable to pre-processing large datasets obtained from other device monitoring technologies.
Health Equity in Cancer Screening in Calgary – A Geographic Approach to Account for Population Socioeconomic Status
Authors: Liu Ning , Vigod Simone , Farrugia Michèle , Urquia Marcelo , Ray Joel
Published: September 2018

IntroductionThere is substantial evidence that cancer screening rates are lower among Canadians with low socioeconomic status (SES) than they are among those with higher SES. In order to optimize cancer screening, there is a need to reduce inequities in cancer screening.

Objectives and ApproachThe purpose of this study is to understand how breast, colorectal and cervical cancer screening participation varies by socioeconomic status within local geographic areas (LGAs) in the city of Calgary. A Bayesian multilevel regression method with a spatial component was used to estimate Standardized Incidence Rates (SIR) at the LGA level. Bivariate spatial clustering analyses between screening rates at the Dissemination Area (DA) level and Pampalon material and social deprivation index was performed to better understand spatial structures of low and high screening rates compared to high and low material and social deprivation scores within LGAs.

ResultsThe effect of material (income, education and employment) and social (living alone, separated, and divorced or windowed) deprivation on lower screening rates was stronger for breast cancer screening, compared to cervical and colorectal screening. Estimated likelihood of screening significantly decreased from the least deprived to the most deprived (9% for the material component and 18% for the social component for Breast cancer; 8% for the material component and 10% for the social component for cervical cancer screening). Clusters of lower screening rates and higher social and material deprivation were identified in the northeastern and central areas of the city.

Conclusion/ImplicationsThe study allowed identifying LGAs and neighborhoods within those LGAs that have lower screening rates likely to be explained by the material and social deprivation of the population. The approach provides additional evidence for planning targeted interventions and reducing inequities for screening.
Exploring Alternative Designs using ‘Big’ Administrative Data
Authors: Roos Leslie , Wall-Wieler Elizabeth , Torabi Mahmoud
Published: September 2018

IntroductionLarge population-based data sets present similar analytic issues across such fields as: population health, clinical epidemiology, education, justice, and children’s services. Step-wise approaches and generalized tools can bring together several pillars: big (typically administrative) data, programming, and study design/analysis. How can we improve efficiency and explore alternative designs?

Objectives and ApproachLinked data sets typically contain: 1) files presenting longitudinal histories 2) substantive files noting various events (concussions, burns, loss of a loved one, public housing entry) and several possible covariates and outcomes.

Step-wise approaches enable automating tasks by developing general tools (decreasing programmer input) and facilitating alternative designs. Macros improve upon the classic ‘one design, one data set’ perspective. Two case studies highlight tradeoffs in retrospective cohort studies (quasi-experiments) among sample size, length of follow-up, and the number of time periods.

ResultsStudy 1: Step 1 calculated the number of mothers with a child placed in care during various index years. Taking 1 year before and after placement generated 5,991 eligible mothers; selecting 5 years before/after decreased the N to 2,281. Step 2 selected appropriate in-province residents. Step 3 handled missing covariates and outcomes, while Step 4 ran alternative designs.

One example (of several) compared maternal mental health outcomes using 8 time periods (in 2 years) before/after the event with outcomes using 16 time periods (in 4 years) before/after. Besides showing increasing maternal problems, the 4-year follow-up sometimes produced different statistically significant periods than the 2-year follow-up.

Study 2. Swedish/Canadian comparisons of mothers with children placed in foster care highlighted growing differences in maternal pharmaceutical use.

Conclusion/ImplicationsPresenting design alternatives is straightforward and applicable across disciplines. Ongoing work is facilitating comparisons of ‘experimental’ and control groups. Literature-derived guidelines and simulation-based techniques should lead to better design decisions. Automated model assessment can help analyze robustness, statistical power, residuals, and bias, suggesting artificial intelligence approaches.
Making Sense of a Hot Mess: Cleaning and Validating Messy Administrative Data to study Supportive Housing in Winnipeg, Manitoba
Authors: Yogendran Marina , Doupe Malcolm , Schultz Jennifer , McDougall Chelsey
Published: September 2018

IntroductionWhile supportive housing (SH) is an important alternate to nursing home (NH) use, these data have never been linked to administrative records in Manitoba. By conducting linkages to other administrative records, we describe a process for cleaning and validating SH data, in preparation to conduct policy-relevant research.

Objectives and ApproachSH data (N=516 units) from Winnipeg were received at the Manitoba Centre for Health Policy (MCHP) in three different files. File 1 (2004-2008; 1005 records) contained monthly client snapshots. File 2 (2008-2010; 1336 records) contained application, move-in, cancellation, and move-out dates. File 3 (2010-2011; 729 records) contained one line of text for each record showing the application, processing, and move-in/cancellation date. We used overlapping data from these files plus linkages to other data sources (Manitoba Population Registry, nursing home data, and Vital Statistics) to clean and assess the accuracy of SH data.

ResultsThe original files contained 2039 people with 3070 records. From this we excluded: i) 215 records with unusable Personal Health Identification Numbers; ii) 949 records with missing SH move-in dates; iii) 691 records that did not match to the Manitoba Health Registry; and iv) 25 records where data did not match to the NH, hospital, or Vital Statistics files. The result was 1190 people each with one record. SH move-out dates were often missing from these records. This field was imputed from other data sources (NH, Vital Statistics). Some people transferred between SH sites, and these data were retained in the same record. Aside from the first year of operation when capacity was low, most SH dwellings operated at 80-100% occupancy annually.

Conclusion/ImplicationsUsing several verification methods including linkages to other data sources, we successfully cleaned and verified the accuracy of the SH data for use at MCHP. High annual SH occupancy rates suggest that the file contains the vast majority of SH users, and can now be used in follow-up research.
Adherence to Breast Cancer Follow-up Care Guidelines for Vulnerable Populations in four Canadian provinces: a CanIMPACT study
Authors: McBride Mary , Groome Patti , Jiang Li , Whitehead Marlo , Li Dongdong , Decker Kathleen , Kendell Cynthia , Winget Marcy , Turner Donna , Urquhart Robin , Grunfeld Eva
Published: September 2018

IntroductionBreast cancer survivors are at risk for late and ongoing problems including cancer recurrence and late effects of treatment. Vulnerable groups may not enjoy equitable access to quality follow-up care. This study examines utilization of guideline-based follow-up care among vulnerable subpopulations in four Canadian provinces.

Objectives and ApproachFor vulnerable groups of breast cancer survivors diagnosed from 2007-2010 in British Columbia (BC), 2007-2011 in Manitoba (MB), 2007-2010 in Ontario (ON), and 2007-2012 in Nova Scotia (NS), alive at 30 months post-diagnosis and followed for five years from diagnosis, we undertook a retrospective population-based cohort study linking cancer registries, clinical and health administrative databases. We calculated adherence to recommended follow-up care for surveillance of recurrent and new cancer, late effects, and general preventive care, and examined variation among provinces. Vulnerable groups were defined as those diagnosed at older ages, with lower income status, and/or who resided in rural area.

ResultsSurvivor numbers were 23,700 (ON), 9493 (BC), 2688 (MB), and 2735 (NS). In Year 2, between 9.3% (BC) and 28.1% (ON) of survivors diagnosed aged 74+ years received annual breast cancer-related PCP or oncologist follow-up visits, a lower proportion than their younger-diagnosed counterparts; rates of surveillance breast imaging (between 34.2% (BC) and 68.6% (ON) in Year 2) were also lower than those diagnosed at younger ages. Those with incomes in the lowest 40\% did not have different rates of primary care physician and oncologist visits compared to the top 60%, nor did their utilization of surveillance imaging or imaging for metastatic disease differ. Guideline-adherent surveillance breast imaging was conducted on a higher proportion of urban than rural patients in all provinces.

Conclusion/ImplicationsWhile area-level incomes do not appear to appreciably affect follow-up care, older age and rural residence resulted in differential access to care. These results suggest that there are gaps in provision of follow-up care that potentially can be addressed through system and practice-level change.