bluuebunny/crossref_metadata_2025_split huggingface dataset:
Wales Inverse Care Law Programme - Design and Implementation of Routine Data Evaluation and Lessons Learned
Authors: Akbari Ashley , Griffiths Rowena , Puchades Alice , Thomas Sara 
Published: December 2020

IntroductionThe Inverse Care Law (ICL) programme in Wales was setup to tackle health inequalities. Eligible populations from deprived communities, at higher risk of cardiovascular disease (CVD) were invited to a health-check and offered appropriate lifestyle and clinical interventions.
Objectives and ApproachEvaluation of this programme is vital to ensure that targeted interventions have been received by those most in need, including referrals to lifestyle services and support. The use of longitudinal population-scale routine-data required the development of an approach which was both efficient and cost effective. To achieve this, the Welsh Longitudinal General Practice (WLGP) data held in SAIL Databank was utilised. A programme-specific methodology was agreed by the programme-board and developed so that data collected from GP records prior, during and post health-check accurately identified the eligible population and allowed the effective assessment of lifestyle and clinical risk factors for CVD; poor diet, physical inactivity, smoking and high alcohol intake, so appropriate interventions could be offered.
ResultsWe evaluated the programme from 2015 to 2019 in 70 GP’s across the participating Health-Boards, and identified 175,671 individuals eligible by the programme criteria. Substantial preliminary work has been carried out to ensure the specification of outcome measures are both clinically and epidemiologically accurate and relevant. The final report scheduled for release in August-2020, which will evaluate the impact of the programme.
Conclusion / ImplicationsThis ambitious evaluation of a large-scale programme set in the community involving disparate systems and a range of stakeholders, has been both complex and challenging, requiring substantial effort to design and implement. We hope the outcomes and lessons learned from our experience will improve the design, implementation and evaluation of the programme and lead to improvements in services and the quality of life for people in Wales, and provide an exemplar for health care providers worldwide wishing to conduct similar programmes in the future.
Peripheral Arterial Disease Among First Nations People with Diabetes in Ontario, Canada: Linkage of Population-Level Healthcare Data
Authors: Shah Baiju R , Frymire Eliot , Jones Carmen R , Khan Shahriar , Slater Morgan , Walker Jennifer D , Green Mike 
Published: December 2020

IntroductionIndigenous people worldwide are overrepresented and adversely effected by diabetes. Peripheral arterial disease and amputation are among the most feared complications of diabetes, leading to profound impacts on patients’ quality of life. This study linked population-level healthcare data to assess the risk of peripheral arterial disease among First Nations people in Ontario with diabetes.
Objectives and ApproachWe linked individual-level population-based healthcare administrative datasets with the Indian Register. The latter provides information on all registered or Status First Nations people in Canada. We compared First Nations people with diabetes with other people in Ontario with diabetes . Age and sex-adjusted rates peripheral revascularization procedures and lower-extremity amputations were calculated for each 12-month period from April 1, 1995, to March 31, 2015. Mortality among those with amputation was determined.
ResultsFirst Nations people received revascularization procedures at a comparable rate to other people in Ontario. However, they had lower-extremity amputations at 3- to 5-times the frequency of other Ontario residents. First Nations people had increased mortality after lower-extremity amputation (adjusted hazard ratio 1.15, 95% confidence interval 1.05 to 1.26), with median survival of only 3.5 years.
Conclusion / ImplicationsFirst Nations people with diabetes in Ontario had a comparable rate of revascularization but a markedly increased risk for lower-extremity amputation compared to other people in Ontario. This discordance suggests that peripheral arterial disease may be underdiagnosed or undertreated among First Nations people in Ontario, and demonstrates an important health inequity faced by First Nations people.
The Role of Partnership in The Integration of Intersectoral Data
Authors: Ratnasingham Sujitha , Camacho Ximena , McDonald Ted , Yada Nicole , Diverty Brent , Ford David 
Published: December 2020

IntroductionThe importance of the determinants of health to health outcomes has long been established. Historically, data from each of these sectors has been captured in disparate, often siloed, sources. Attempts to integrate these data have faced a number of challenges including technical, legislative and interpretative barriers, creating inefficiencies and inhibiting knowledge sharing. Despite this, there have been notable successes where intersectoral data and health data have been brought together in a meaningful way. The establishment of strong partnerships, with academia, governments, privacy and legal sectors, and other bodies, across sectors has been key to this success. These partnerships ensure data are integrated, analyzed, and interpreted accurately and appropriately, while also leveraging existing investments and expertise.
Objectives and ApproachThe objective of this session is to explore the role of partnerships throughout the data integration life cycle, from initial discussions, to data integration, through to connecting research output to policy impact. Each of the presenters will discuss the successes, barriers and mitigation strategies they have experienced across different jurisdictions using real world examples.
ResultsHealth research institutes globally are increasingly able to access routinely collected intersectoral data from non-health sectors. In each institute, data are unique, complex and have been collected in a manner consistent with the needs of the sector. As health research institutes work to understand the data structures and determine the best way to link, use and interpret the information according to national and international best practice guidelines, it has become clear that it is critical to undertake this in partnership with experts from each sector, who understand how the data was collected and can guide appropriate interpretation. In addition, these partnerships have enabled the connection of policy priorities in other sectors with research done in the health sector using intersectoral data. For example, in addition to supporting government health departments, health research institutes have collaborated with other government ministries including immigration, social services, and education. This session will present real world examples from local (provincial), national and international contexts, and highlight a novel data platform, being developed to minimize barriers to data access and use across sectors and jurisdictions.
Conclusion / ImplicationsThe participants on this panel will demonstrate the importance of partnership throughout the data integration life cycle when working with intersectoral data using real world examples. Collaboration increases the value of integrated data to both health and non-health sectors, through the connection of policy priorities and support of research across the determinants of health.
Opioid Agonist Treatment and Risk of Mortality During an Opioid Overdose Public Health Emergency: A Population-Based Retrospective Cohort Study
Authors: Pearce Lindsay A , Min Jeong Eun , Piske Micah , Zhou Haoxuan , Homayra Fahmida , Slaunwhite Amanda , Irvine Michael A , McGowan Gina , Nosyk Bohdan 
Published: December 2020

IntroductionOpioid agonist treatment (OAT) is a safe and effective treatment for opioid use disorder (OUD). However, people commonly stop and start OAT and their risk of death is high immediately after stopping. The prevalence of illicitly manufactured fentanyl and other highly potent synthetic opioids have increased in the illicit drug supply globally. Yet, there is limited evidence examining the relationship between OAT and mortality when these contaminants are widely available in the illicit drug supply.
Objectives and ApproachWe aimed to compare the risk of mortality on and off OAT in a setting with a high prevalence of illicitly manufactured fentanyl and other potent synthetic opioids in the illicit drug supply. We linked five health administrative datasets in British Columbia, Canada, creating a cohort of 55,347 people with OUD who received OAT during a 23-year period (1996 to 2018). We compared the risk of mortality on and off treatment over time, and according to time since starting or stopping treatment and by medication type.
Results7,030 of 55,347 (12.7%) OAT recipients died during follow-up. All-cause SMR was substantially lower on OAT (4.6 [4.4 to 4.8]) compared to off OAT (9.7 [9.5 to 10.0]). In a period of increasing prevalence of fentanyl, the relative risk of mortality off OAT was 2.1 [1.8 to 2.4] times higher than on OAT prior to the introduction of fentanyl, and increased to 3.4 [2.8 to 4.3] at the end of the study period (65% increase in relative risk).
Conclusion / ImplicationsThe protective effect of OAT on mortality increased as fentanyl and other synthetic opioids became common in the illicit drug supply, while the risk of mortality remained high off OAT. As fentanyl becomes more widespread globally, these findings highlight the importance of interventions that improve retention on opioid agonist treatment and prevent recipients from stopping treatment.
Changes in Aboriginal Patient Experiences of Care in NSW Public Hospitals From 2014 To 2018: The NSW Patient Survey Program
Authors: Tran Hoang Ngoc Bich 
Published: December 2020

IntroductionNew South Wales is home to more Aboriginal people than any other state or territory in Australia. While much is known about social and health status among these Aboriginal people, less is known about their experience of healthcare.
Objectives and ApproachBHI produces independent reports and information about the performance of the NSW healthcare system. In collaboration with the NSW Ministry of Health Centre for Aboriginal Health, our report explored trends in Adult Admitted Patient Survey in public hospitals for a range of measures from 2014 to 2018 for Aboriginal and non-Aboriginal patients. Administrative survey data were used to establish a sample frame, send questionnaires to a random sample of patients within three months following discharge and assess representativeness of respondents. We used logistic regression models, adjusted for age, sex, education and language spoken at home, to estimate the change of experience over time for both populations.
ResultsThere were 122,626 patients who shared their experiences each year from 2014 to 2018, among them, 4% identified themselves as Aboriginal. Aboriginal respondents in the survey were similar in age, sex, country of birth and stay type to the administrative sampling data. In 2018, 70% of Aboriginal patients said they would “speak highly” of their experience compared to 79% of non-Aboriginal patients. Across 51 measures, experience of care improved significantly for 39 measures among non-Aboriginal patients, and four among Aboriginal patients (privacy, experience with nurse, communication with patients).
Conclusion / ImplicationsAboriginal patients have less positive experience of the hospital care in general and there has been little improvement in their experience in recent years. Identifying areas of less positive experiences where health professionals can play a role individually or in a team could minimise disparities in experience of care.
Using Reproducible Data Visualizations to Augment Decision-Making During Suppression of Small Counts
Authors: Koval Andriy , Smolina Kate , Leamon Anthony 
Published: December 2020

IntroductionWhen reporting disease rates to the public, a health system must take precaution to protect released data from re-identification risks. While specific guidelines and methods vary across data systems and governances 1 , redaction of cells with small values is a key component in any approach for preparing data for public release. These preparations, when conducted manually, have proven to be arduous, time consuming, and prone to human error. Although finding a “small” value (e.g. “< 5 ” ) is straightforward, detecting conditions in which suppressed values could be recalculated from related cells involves human judgement.
Objectives and ApproachGuided by the real-world objective to reports the rates of chronic diseases in British Columbia, we aimed to design a reproducible workflow that would augment human decision-making and offer a nimble quality control tool, approachable by epidemiologists without technical background. Our workflow (1) splits data into disease-by-year data frames of a specific form, (2) applies a sequence of algorithms trained to recognize conditions that made recalculation of suppressed values possible and (3) prints a graph for each case of suggested automatic redaction to be confirmed by a human.
ResultsThe augmented suppression system was successfully integrated into the maintenance of Chronic Disease Dashboard, an online reporting tool of the Observatory for Population and Public Health designed to address the gap in surveillance of chronic diseases in British Columbia. Anticipating the evolution of suppression logic, we isolated the logical tests responsible for redaction and provided several options to vary the degree of preserved information.
Conclusion / ImplicationsInstead of employing a complex generalizable solution, we make a case for organizing the procedure for small cell redaction as a data visualization task, allowing for straightforward quality control of suppression decision and thus more approachable to a non-technical audience, as well as for employing such learning devices as workflow maps and function dependency trees for structuring applied projects and ensuring their reproducibility.
Pre-Hospital Factors Influencing the Provision of Acute Care for Patients with Stroke: Preliminary Findings from A State-Wide Data Linkage Study
Authors: Eliakundu Amminadab , Smith Karen , Kilkenny Monique , Kim Joosup , Bagot Kathleen , Andrew Emily , Bladin Christopher , Cadilhac Dominique 
Published: December 2020

IntroductionImprovement in access to reperfusion therapy and reductions in treatment delays requires coordination of multiple systems and services including a well-organised and streamlined pre-hospital care system.
Objectives and ApproachOur objective is to examine pre-hospital and hospital factors that influence long-term outcomes in patients with stroke. We linked and merged patient-level data from the Australian Stroke Clinical Registry (AuSCR) to Ambulance Victoria (AV), hospital administrative datasets (Victorian Admitted Episodes Data; VAED) and emergency department data (Victorian Emergency Minimum Dataset; VEMD) using probabilistic, iterative methods. Logistic regression models were used to determine clinical factors associated with access to evidence-based treatments.
Results7,373 episodes in the AuSCR were available for linkage, of which 4,569 (62%) were matched with AV records (58% male, median age 72 years). Of these 4,569 matched records, 4,159 (58% male, median age 73 years) had a record in the VAED or VEMD. Stroke or transient ischaemic attack was suspected for 68% of patients by paramedics based on the AV data. Highest transport priority was used for 64% of patients. Patients suspected of stroke by paramedics were more likely to be treated in stroke unit (unadjusted odds ratio, 1.72; 1.47, 2.01) and more likely to receive thrombolysis if ischaemic stroke (unadjusted odd ratio: 4.64, 3.47, 6.20).
Conclusion/ImplicationsLinkage of these administrative data with the AuSCR provide the opportunity to interrogate a range of questions to inform policy and practice of acute stroke care. Future analyses will investigate patient (such as comorbidities), clinical and system factors that influence provision of evidence-based care for patients with stroke and whether these influence outcomes at 6 months after stroke.
The Developmental and Educational Impact of Hearing Impairment in Aboriginal Children Living in Remote Australia – A Data Linkage Study
Authors: Shawon, Md Shajedur Rahman 
Published: December 2020

IntroductionHigh prevalence of otitis media (OM) and hearing impairment (HI) in Aboriginal children in Australia’s Northern Territory (NT) is well documented. HI may be associated with poorer outcomes in early childhood development, school attendance and academic achievement. However, these associations have not been investigated in this population.
Objectives and ApproachRetrospective cohort studies were conducted to investigate the association between HI and three education-related outcomes in Aboriginal children living in remote NT communities. The explanatory variable for all studies was audiometrically determined hearing levels. The outcome measures were Australian Early Development Census (AEDC) results, representing developmental outcomes at around age 5 years; Year 1 school attendance rates; and, National Assessment Program – Literacy and Numeracy (NAPLAN) results for Year 3 for academic achievement. Relevant confounding variables from available linked datasets were controlled for in the statistical analyses.
ResultsCompared with normal hearing children, after adjustment for selected confounding factors, children with HI had higher risk for being developmentally vulnerable in two or more of the five AEDC domains (adjusted odds ratio 1.69); lower AEDC domain score sum (-1.60~-2.40); scoring lower in Numeracy (by 15.2 points), Writing (by 13.4-15.6 points) and Spelling (by 5.0 points) domains of NAPLAN; and having lower attendance rates (attending 4.0-5.6 fewer days in Year 1). Severer HI categories generally yielded greater effect sizes. Notably, across the studies, some confounding variables included in the analysis yielded substantially greater effect sizes.
Conclusion / ImplicationsOM-related HI has a negative impact on early childhood development, Year 1 school attendance and academic achievement in Year 3 in Aboriginal children living in remote NT communities. To improve the developmental and educational outcomes it is important to detect HI at an early age and provide effective educational support, in addition to clinical and audiometric management.
Five Key Lessons for A Cross-Jurisdictional Data Linkage Project Win-Win
Authors: Jones Sarah 
Published: December 2020

IntroductionThe Coordination of Health Care study was developed by the Australian Institute of Health and Welfare in partnership with the Australian Bureau of Statistics (ABS) to fill an important data gap relating to patient-reported experiences of continuity of care across Australia.
Objectives and approachThe 2016 Survey of Health Care was administered by the ABS. Over 35,000 responses were weighted to population benchmarks before being linked toadministrative datasets including hospital and emergency department care, Medicare Benefits Schedule and Pharmaceutical Benefits Scheme.
These linked datasets aim to provide a comprehensive picture of patient journeys in relation to patient-reported experiences of continuity of care.
The cross-jurisdictional data linkage spanned state and federal agencies, data linkage units and state health departments. Approvals across 10 different ethicscommittees were sought. Study management included governance and compliance with state and federal privacy legislation, negotiation of safe transfer of sensitive information across organisations, data interrogation, understanding data quality and study limitations.
Specific challenges included sensitivities in response to requested data variables, obtaining private hospital data, understanding state based legislation, particularly in changes to guardianship and consent, working across jurisdictions to meet requirements and communicating linkage protocol.
ResultsAll hospital linked datasets were received in early 2020 and currently being validated. Analysis of linked data will investigate continuity themes on low urgencycare and potentially preventable hospitalisations.
ConclusionFive key lessons learned from the cross-jurisdictional data linkage:

Engage with jurisdictional-based organisations early. Leveraging existing committees in the first instance can help.
Be specific in documentation and approach.
Subtly, every state is different. Local context and state legislation matter.
Governance ethics and compliance take time. Get started early.
Liaise broadly, across and between organisations.
Residential Mobility and Changes in Deprivation Levels For 0 – 4 Year Olds in New Zealand
Authors: Robertson Oliver , Nathan Kim , Howden-Chapman Philippa , Baker Michael , Carr Polly Atatoa , Pierse Nevil 
Published: December 2020

IntroductionHigh residential mobility has been shown to have a negative impact on young children, with long-term consequences for their physical and mental health, and social outcomes. Understanding the broad trends in moves and differentiating between moves to neighbourhoods which are likely to have ‘positive’ or ‘negative’ consequences is an important question in the residential mobility literature, with important implications for public policy and children’s health.
Objectives and ApproachThe aims of this study are to describe the level and changes in neighbourhood deprivation that occur during residential moves involving children aged 0–4 years of age in New Zealand, and to assess whether these changes differ for children of different ethnicities.
Our cohort is 565,689 children born in New Zealand from 2004 to 2018. The dataset of residential moves is created using the full address notification table from the Integrated Data Infrastructure, a set of government data tables that have been linked and anonymised by Statistics New Zealand.
ResultsWhile there is a reasonable amount of mobility in terms of the deprivation of the area in which a child lives, the most likely outcome of a move is that it will be to an area with the same level of deprivation. This is especially true for the most and least deprived areas. Areas of high deprivation have the highest levels of churn and residential mobility. Māori and Pasifika children have lower levels of socioeconomic mobility and are more likely to move into and to stay in, areas of high deprivation.
Conclusion / ImplicationsChildren living in highly deprived areas are likely to stay in high deprivation areas. Children living in these areas also move more frequently than the general population. Māori and Pasifika children are overrepresented in high deprivation areas, and on average they move more frequently than the group of all children aged 0 – 4.