bluuebunny/crossref_metadata_2025_split huggingface dataset:
Public views and recommendations on the use of linked data for research: preliminary results from a public deliberation engagement
Authors: Teng Jack , McGrail Kim , Bentley Colene , Burgess Michael , O'Doherty Kieran 
Published: September 2018

IntroductionThe use of linked data for research is increasing, including in complexity of requests. Rules around access to and use of data necessarily trade-off risks related to privacy to achieve social benefits. Including informed and civic-minded public recommendations that consider different perspectives on privacy and benefit will improve related policy.
Objectives and ApproachPopulation Data BC is conducting a deliberative public engagement regarding the use of complex linked data for research. Members of the public will be provided with written materials and hear speakers outlining considerations from multiple perspectives in data access and use, including benefits for health research, risks to privacy, and implications for disability and minority groups. Participants in the deliberation will then discuss questions about the use of linked data and ideas around principles for that use in small and large groups, and develop recommendations for data sharing policies.
ResultsWe will be sharing our preliminary analysis of the public deliberation results at the conference. The public deliberation encourages the participants to develop policy recommendations that respect diversity of perspectives while negotiating constructive advice. It asks the group to make recommendations and to identify and explore issues on which the group has persistent disagreement. We will discuss insights into how the public values the use of data linkage and under what conditions such use becomes problematic. For example, we are hoping to gain insight about how publics determine if a project is in the public interest, or conversely, how a project may pose unacceptable harm.
Conclusion/ImplicationsChanges in available data and increasing ability to link data makes it essential to include public views in systems of data access governance. Understanding the hopes and concerns of the public regarding the use of linked data for research will help develop data access regulations that reflect wide public interests.
What happened to my patient after I dropped them off at the ED? Linking Welsh ambulance to secondary care and mortality data
Authors: John Gareth 
Published: September 2018

IntroductionThe Welsh ambulance service hold very detailed information about emergency calls received, incidents and associated ambulance journeys, but very little about what happens to patients after they have been conveyed to hospital.
Linkage of ambulance data to secondary care and mortality data can allow new outcome measures to be developed.
Objectives and ApproachA proof of concept was jointly initiated by the Welsh Ambulance Service, Welsh Government and the NHS Wales Informatics in order to explore how ambulance conveyance data could be linked to other routinely collected secondary care and mortality data, with the aim of developing new outcome-based measures for the evaluation of the effectiveness of the ambulance service and the unscheduled care system as a whole.
As there were very few patient demographic data items common to both the ambulance and secondary care datasets, the resulting probabilistic linkage relied largely on the use of time and location-based distributions.
ResultsThe linkage methodology proved to be highly successful for those patients conveyed by ambulance to an ED, with the various location and time-based fields from the ambulance dataset combining well with similar fields in the ED dataset. Out of all ED attendance records which had "Ambulance" as the stated mode of arrival, an associated ambulance record was found in over 90\% of cases.
Additional exact and rules-based deterministic methods were used to link the ED attendances to associated admissions, critical care and mortality records, with new ED, in-hospital and longer term outcome variables developed.
Finally, the project team analysed the impact of ambulance response times and ED handover delays on these outcome measures.
Conclusion/ImplicationsThe work demonstrated how the linked data could provide managers, commisioners and policy-makers with a more holistic view of the unscheduled care system. Work to-date has focussed mainly on conveyances to ED, however the next stage will be to develop outcome measures relating to those patients treated at the scene or advised by phone.
Attending Nurse Practitioners in Long-Term Care Homes Evaluation
Authors: Fearon Danielle , Saskin Refik , Ishiguro Lisa , Graves Erin 
Published: September 2018

IntroductionIn 2014, the Ontario Ministry of Health and Long-Term Care (MOHLTC) announced funding for 75 nurse practitioners (NPs) over three years in long-term care (LTC) homes. This evaluation was approved by ICES’ Applied Health Research Question (AHRQ) team, a portfolio which answers questions from stakeholders having impact on healthcare policy.
Objectives and ApproachThe purpose of this project is to evaluate the impact of the first thirty NPs hired. Changes will be evaluated using key outcome measures of resident care (e.g., early hospital discharge, emergency room bed days) identified through a literature review conducted by the MOHLTC. LTC home residents were identified using all individuals with claims in OHIP during the 2016-17 fiscal year with a location of a LTC home. LTC homes with a hired NP were considered to be cases and all other LTC homes were considered to be controls.
ResultsFor part one of this evaluation, case and control LTC homes were stratified by bed size, Case Mix Index, rurality and Local Health Integration Network. Hospitalization records and emergency visits (from Discharge Abstract Database and National Ambulatory Care Reporting System) were determined for LTCH residents 6 months before and after the NP hire date of October 1, 2016. Overall, the rate of hospital admissions (per 100 residents) increased by 3.44% (8.51% to 11.94%) following the NP hire date; whereas, the rate of hospital admissions increased by 2.29% (6.55% to 8.83%) among controls. Following the NP hire date, the rate of emergency department visits also increased by 3.15% among cases (16.62% to 19.77%) in comparison to a 2.31% increase among controls (12.55% to 14.86%).
Conclusion/ImplicationsThe findings from this evaluation will inform further implementation strategies of the NP program and guide decision-making of future funding opportunities. In summary, the results will inform policies to strengthen care of LTC homes and improve the quality of care of residents.
Using data to explore vulnerable women's utilization of maternity health care
Authors: Rostami Mahnoush , Charland Paola , Memon Ameera 
Published: September 2018

IntroductionInequitable access to appropriate maternity health care is an issue for vulnerable women that negatively impacts health outcomes. As part of a feasibility study on midwifery services for vulnerable women, we used administrative data to further our understanding of socially disadvantaged women’s use of the primary care system during pregnancy.
Objectives and ApproachTo better understand maternity health service utilization and social vulnerability of women in Calgary Alberta, a research partnership was formed between Alberta Health Services and a social service agency that serves clients experiencing, poverty, and food insecurity and were at risk for homelessness. This multi-phase study linked postal code data to data from provincial databases. Variables included socioeconomic characteristics, prenatal health care utilization and maternal and birth outcomes for the years 2013 to 2015.
ResultsDatabases accessed included the Alberta Perinatal Health Program (APHP), Alberta Health Practitioner Claims Database, AHS Admission Discharge Transfer Database, Discharge Abstracts Database, National Ambulatory Care Reporting, and Provincial Registry Database.
Data linkages yielded a total sample size of 7493 women, with 15.5% of women qualifying as ‘socially vulnerable’. Women receiving social assistance are relatively younger, experience more pregnancies, have higher antenatal risk scores and accessed maternal and emergency care more often and later in their pregnancy than those women who are not accessing social services. Our results suggest women living in vulnerable circumstances experience higher risk pregnancies that those not living in vulnerable circumstances. Therefore a maternity care model such as midwifery, which uses a holistic approach to care may be beneficial for vulnerable women.
Conclusion/ImplicationsFindings from our study confirm that women experiencing poor social circumstances are at increased risk for complications during pregnancy and birth. Therefore, we need to further investigate utilizing maternity models of care that serve both the maternal health needs and the social needs of this population.
In-Utero SSRI and SNRI Exposure and the Risk of Neurodevelopmental Disorders in Children: A Population-Based Retrospective Cohort Study Utilizing Linked Administrative Data
Authors: Singal Deepa , Chateau Dan , Dahl Matthew , Derksen Shelley , Ruth Chelsea , Katz Laurence , Wall-Wieler Elizabeth , Hanlon-Dearman Ana , Brownell Marni 
Published: September 2018

IntroductionMany studies demonstrating an association between in utero exposure to serotonergic antidepressants and higher risk of neurodevelopmental disorders in children are confounded by history of maternal depression and disease severity. We conducted a population-based analysis of women diagnosed with mood/anxiety disorder, a patient population for whom pharmacotherapy is clearly indicated.
Objectives and ApproachUsing linked population-based administrative data, we identified all mother-newborn pairs in Manitoba (born 1996 to 2009, with follow-up through 2014). High dimensional propensity scores and inverse probability treatment weighting were used to address confounding by indication and disease severity. The final trimmed cohort consisted of mothers who were diagnosed with a mood/anxiety disorder from 90 days prior to conception until delivery (n=4995). Cox Proportional Hazard Regression models were used to estimate risk of Autism Spectrum Disorder, epilepsy and attention deficit hyperactivity disorder (ADHD) in offspring. In addition to clinical data, we used novel education data to define outcomes in children.
ResultsAmong the cohort of mothers diagnosed with a mood/anxiety disorder during pregnancy or up to 90 days before, 16.8% received at least two dispensations of an SSRI or SNRI during pregnancy. We did not observe an association between use of SSRIs/SNRIs during pregnancy and increased risk of Autism Spectrum Disorder (hazard ratio 0.92; 95% CI 0.42 to 2.03), epilepsy (hazard ratio 1.21; 95% CI 0.48 to 3.05), or ADHD (hazard ratio 1.13, 95% CI 0.78 to 1.64) among offspring.
Conclusion/ImplicationsIn the absence of randomized control trials, large observation studies using sophisticated data analysis are the gold standard of evidence to help patients and clinicians making the decision to continue antidepressant use during pregnancy. Results of this study reassure women for whom the medication is clinically indicated.
Measuring Trends in Health Inequalities across Urban Cities in Canada: A Focus on Health System Outcomes
Authors: Nichols Meredith , Chuang Junior , Grimwood Sara , Hynes Geoff , Harvey Jean , Plante Charles , Neudorf Cory , Allin Sara 
Published: September 2018

IntroductionThe majority of Canadians live in cities, which have experienced rising income inequality. This study examines how socio-economic inequalities in health system outcomes vary across and within Canada’s major cities over time to better understand these differences and to support informed decision-making and public policy planning to reduce inequalities.
Objectives and ApproachThis study links a range of hospitalization indicators with neighbourhood income quintile and city geography data using patient postal codes and Statistics Canada’s Postal Code Conversion File Plus (PCCF+). Age-standardized indicator rates were calculated and income-related health inequalities were summarized using disparity rate ratio (DRR), disparity rate difference (DRD) and relative concentration index (RCI). Data were pooled across five-year intervals and linked to Census data years (2006, 2011, and 2016). City (Census Metropolitan Areas (CMAs)) and sub-city (Census Subdivisions (CSDs)) results enabled comparisons within and across cities and provided local level information to strengthen measuring and monitoring of health inequalities.
ResultsAnalysis of the age-standardized rates for the hospitalization indicators (Hospitalizations for COPD (less than 75 years), Heart Attacks, Injury, Stroke, Self-Injury, Opioid Poisoning, Ambulatory Care Sensitive Conditions, and Hospitalizations Entirely Caused by Alcohol), overall and by neighborhood income quintile revealed an income gradient and significant variations within and across the CMAs and over time. Variations in DRR, DRD and RCI results were also observed across the CMAs over time, and between the CSDs within a CMA. Income-related inequalities in some hospitalization indicators persisted in Canada’s major cities with trends showing that people from lower income neighbourhoods experienced increased rates of hospitalization compared to people from higher income neighbourhoods.
Conclusion/ImplicationsThis is the first study examining socio-economic health inequalities at city and sub-city levels across Canada. The methods used are relevant to others interested in local health inequality measurement. Our analysis provides evidence for developing and targeting public policy and health interventions to improve outcomes for vulnerable populations within cities.
From the back room to the front room: Combining clinical and financial information to support evidence-based decision making
Authors: Robertson Nathalie , Loreti Marcus 
Published: September 2018

IntroductionDecisions in healthcare are not based on a single piece of evidence. Decision-makers consider a broad range of information, including patient, system and financial information. Canadian healthcare decision-makers now have access to linked clinical and financial data – at the patient level - via an online, private tool.
Objectives and ApproachThe objectives of this presentation are to showcase the power of having linked inpatient and ambulatory care clinical and financial data, as presented in an online tool. More specifically, two separate scenarios will be worked through, demonstrating how key decisions can be impacted by having record-level clinical and financial information. For example, a hospital may make a different decision when looking at the price differential of performing some surgeries and keeping patients overnight, versus performing these same surgeries in day surgery context and sending patients home. Supporting drill-down detail and visualizations will also be showcased.
ResultsThe presentation will focus on the importance of leveraging and integrating available information to better support decision-making. The presentation will emphasize how this tool, which uses linked clinical and financial data, is an example of the integration of new information sources into traditional decision-making practices. For example, with the availability of detailed cost estimates tied to clinical information, decision-makers have the ability to provide budgeting and costing estimates, by area, for different patient types. This is particularly important for health organizations that do not have a patient costing system in place.
Conclusion/ImplicationsTools that integrate information in an easy to use format allow decision-makers to access important information quickly, thus facilitating more time to gather supplemental information and consider the information at hand, ultimately supporting evidence-based decision-making.
Use of the CANHEART ‘big data’ registry to conduct a large randomized registry clinical trial to improve lipid management in Ontario, Canada
Authors: Khan Anam , Jia Jing , Chu Anna , Udell Jacob , Farkouh Michael , Tully Jack 
Published: September 2018

IntroductionCreation of registries using linked population-based databases could potentially be used to conduct large registry-based clinical trials. As part of the CANHEART-Strategy for Patient-Oriented Research (SPOR) innovative clinical trials initiative, we explored the practicality of using the linked CANHEART registry to conduct a cluster-randomized trial aimed at improving lipid management.
Objectives and ApproachThe CANHEART registry (www.canheart.ca) was created through the linkage of 19 population-based health databases in Ontario, Canada, providing individual-level socio-demographic, geographic, hospitalization, disease testing/screening, mortality, prescription medication, and behavior/lifestyle information. Using CANHEART defined eligibility criterion, small and medium-sized, high cardiovascular-risk health regions (defined as having acute myocardial infarction, stroke or cardiovascular death rates greater than the Ontario average) are being randomly allocated to receive either the intervention (availability of a lipid management ‘toolbox’) or standard care. Cohort linkages to additional years of data will occur regularly over the 3-year trial to ascertain the primary outcome of appropriate statin prescribing rates.

\section*{Results}
Record linkage enabled us to determine baseline characteristics of 835,345 patients aged 40-75 as of January 2016, being treated in the 28 study-eligible regions by 2,012 family physicians. Preceding the study, the baseline statin use rate was 35.7\% (in 66-75 year olds) across these regions and the cardiovascular event rate ranged from 3.78-5.64 events/1000 person-years. A randomization procedure yielded 14 regions in both the intervention and control arms which did not differ significantly in socio-demographic characteristics, traditional cardiovascular risk factors, disease history, prevalence of statin use, or access to healthcare indicators. Working groups have been established to operationalize the lipid management tools that will be made available in the intervention regions. Analysis of newly linked participant data will permit outcome ascertainment at trial completion.

\section*{Conclusion/Implications}
Our work demonstrates the feasibility of using the CANHEART ‘big data’ registry to conduct a large, cluster-randomized clinical trial aimed at improving lipid management, without requiring any primary data collection. Broader use of this methodology has the potential to change the existing paradigm for conducting pragmatic clinical trial research.
Implementing a script to improve the quality of the Brazilian Disease Surveillance Data System using record linkage
Authors: Sobrino Rejane , Souza Marli , Oliveira Gisele , Guillen Luis Carlos , Coeli Claudia , Saraceni Valeria 
Published: September 2018

IntroductionThe National Disease Surveillance Data System (SINAN) is the main tool used by tuberculosis control programs to measure control actions and disease incidence rates in Brazil. Therefore, data quality is essential to support health surveillance and management.
Objectives and ApproachThe aim of this study was to propose an algorithm for the qualification of the variables type of entry, treatment outcome, HIV test, HIV/AIDS co-infection and diabetes comorbidity.
We conduct a probabilistic record linkage between three databases of the city of Rio de Janeiro: SINAN-Tuberculosis, 2004-2012; the Mortality Information System (SIM), 2009-2013; and AIDS unified database, until 2012 (SINAN-AIDS, SIM registries that AIDS was the basic cause of death, drug distribution and laboratory databases). The criteria for qualifying the variables were based on technical guidelines, published by the Brazilian Ministry of Health. We implemented a script using Structured Query Language.
ResultsThe script had 103 rules. There was an 115% increase in the treatment output classified as "dropout" due to a decrease in: i) the number of records with patient transference but that they were not followed by another health care unit; output treatment classified as "ignored"/missing values; records with treatment output classified as "cure" before the end of the treatment. There was a 28% decrease in the number of records with treatment output classified as "death due to tuberculosis" and a 64% increase in those classified as "death due to other causes". There was a 2.4% increase in the number of records with diabetes as a comorbidity, a 5.3% increase in the number of registries with HIV-positive test and a 8.7% increase in TB-HIV/AIDS co-infection.
Conclusion/ImplicationsLinking databases is an important strategy for retrieving information from other systems to improve the quality of information to support decision making for TB control.
Bias, accuracy and sample size in the systematic linking of historical records
Authors: Antonie Luiza , Inwood Kris , Minns Chris , Summerfield Fraser 
Published: September 2018

IntroductionLinking distinct historical sources on an automated basis directs attention to the quality and representativeness of the linked data created by these systems. Linking with time-invariant personal characteristics arguably minimizes bias or departures from representativeness even though a wider set of features might generate more links.
Objectives and ApproachThe objective of this research is to compare, evaluate and understand bias when two linking methodologies are employed on the same data sources. Our approach to studying this problem is by comparing linked records from Canadian censuses (linking 1871 to 1881) generated by two different linking strategies. The first method is a support vector machine based classification model on time-invariant individual characteristics. Using this method a large number of multiple matches is generated, as records look similar on a small number of time-invariant individual characteristics. The second method adds a second stage of disambiguating multiple matches using family information.
ResultsWe compare the links produced by the two methods used in the study and we discuss the results. The comparison is in terms of number of links produced, their quality (false positive rate) and the bias of the linked data produced. A complication is that there are many dimensions of bias. Even time-invariant criteria typically generate some bias.
As expected, the two-step process produces a larger linked sample. Interestingly, it also produces a lower error rate and different patterns of bias. Both methods understate the Quebec-born, French-ethnicity, the unmarried and adolescents. Unexpectedly, the bias in favour of married people is larger using individual (first method) than family information (second method). However, family-based linking does over-represent young children.
Conclusion/ImplicationsResults suggest that neither method will be universally preferable. Rather, the choice of research question may affect the preferred balance of biases and link rate. Fortunately, the advance of computational capacity allows a researcher to select a method that generate links most appropriate for the problem at hand.