bluuebunny/crossref_metadata_2025_split huggingface dataset:
Collaboration with First Nations Communities to Produce Tailored Community-Driven Results
Authors: Mecredy Graham , Naponse-Corbiere Pam , Walker Jennifer 
Published: December 2020

IntroductionWhile First Nations communities are well aware of the unique health challenges and requirements of their populations, research evidence is often needed to support this knowledge. First Nations communities face continual challenges accessing data pertaining to the health of their people that is held by the government or other organizations.
Objectives and ApproachThrough the Applied Health Research Question (AHRQ) program at ICES, First Nations communities in Ontario, Canada, have an avenue to access vital population health information about their people. While keeping questions of privacy, data sovereignty, data governance, and the OCAP® principles at the forefront, First Nations partners are active members and collaborators on community driven projects that are of importance to their communities. An Indigenous health data training program has also been developed to run concurrently with these projects, to enhance research knowledge and capacity within partner First Nations communities.
ResultsFirst Nations community partners are the main drivers in deciding and refining the research questions for their projects. They are engaged throughout the project process to ensure the production of results that suit the specific needs of the partners. Project results are only shared with the partners, who utilize and disseminate them as appropriate within their communities.
Conclusion / ImplicationsWith access to previously difficult to access population health data sources, First Nations communities are able to use health system data as an additional tool to better plan and implement community health programs, to lobby for additional funding, and ultimately to contribute to positive policy change.
Using Linked Whole-Of-Population Data to Estimate Education-Related Inequalities in Cause-Specific Mortality in Australia
Authors: Welsh Jennifer , Joshy Grace , Moran Lauren , Soga Kay , Law Hsei Di , Butler Danielle , Bishop Karen , Gourley Michelle , Eynstone-Hinkins James , Moon Lynelle , Blakely Anthony , Banks Emily , Korda Rosemary J 
Published: December 2020

IntroductionOfficial Australian estimates of socioeconomic inequalities in cause-specific mortality have been based on area-level socioeconomic measures. Using area-level measures is known to underestimate inequalities.
Objectives and ApproachUsing recently released census linked to mortality data, we estimate education-related inequalities in cause-specific mortality for Australia. We used 2016 Australian Census and Death Registration data (2016-17) linked via a Person Linkage Spine (linkage rates: 92% and 97%, respectively) from the Multi-Agency Data Integration Project (MADIP). Education, from the Census, was categorised as low (no secondary school graduation or other qualification), intermediate (secondary graduation with/without other non-tertiary qualifications) and high (tertiary qualification). Cause of death was coded according to the underlying cause of death using the ICD-10. We used negative binomial regression to estimate relative rates (RR) for cause-specific mortality at ages 25-84 years, in the 12-months following Census, comparing low vs high education, separately by sex and 20-year age group, adjusting for age.
Results80,317 deaths occurred among 13,856,202 people. For those aged 25-44 years, relative inequalities were large for causes related to injury and smaller for lesspreventable deaths (e.g. for men, suicide RR=5.6, 95%CI: 4.1-7.5 and brain cancer RR=1.3, 0.6-3.1). For those aged 45-64, inequalities were large for causes related to health behaviours and amenable to medical intervention, e.g. lung cancer (men RR= 6.4, 4.7-8.8) and ischaemic heart disease (women RR=5.0, 3.2-7.7), and were small for less preventable causes e.g. brain cancer (women RR=0.9, 0.6-1.3). Patterns among those aged 65-84years were similar to those aged 45-64 years.
Conclusion / ImplicationsIn Australia, inequalities in mortality are substantial. Our findings highlight the health burden from inequalities, opportunities for prevention and provide insights on targets to effectively reduce them.
Using Linked Data to Estimate the True Number of Individuals Impacted by Residential Fire
Authors: Ghassempour Nargess , Harvey Lara A , Tannous W. Kathy 
Published: December 2020

IntroductionResidential fires remain a significant global public health problem. It is recognised that the reported number of residential fires, fire-related injuries and deaths significantly underestimate the true number. Australian population-based surveys show that around two-thirds of respondents who experience a residential fire are unwilling to call fire services, and studies from the US and New Zealand highlight that many individuals who access medical treatment for fire-related injuries do not have an associated fire incident report.
Objectives and ApproachThis population-based study aimed to quantify the total number of residential fires, fire-related injuries and associated health service utilisation. The cohort included all persons residing at a residential address in New South Wales, Australia, which experienced a fire between 1 January 2005 - 31 December 2014. The cohort comprised linked person-level data from eight administrative datasets and includes information about nature of fire, first responder use (Fire and Rescue (FRNSW) and ambulance services), health service utilisation (emergency department, hospital and burns outpatient clinic) and health outcomes.
ResultsOver the study period, FRNSW responded to 42,491 residential-fire incidents, involving 42,160 individuals with some individuals reporting multiple times. In total, 3,382 individuals used one or more health service and 154 individuals died. Of individuals who contacted FRNSW, 1,661 (3.9%) used health services;ambulance (n=1,101), emergency department (n=1,114), hospital admissions (n=168). There were 95 deaths. There were 1,721 (51%) additional individuals who used one or more health service as a result of a residential-fire that did not contact FRNSW and 59 additional deaths were identified.
Conclusion / ImplicationsThis study found that more than half of individuals who used health services for residential fire-related injuries did not have an associated fire report, highlighting the importance of data linkage for accurate communication to policy makers and the public on the prevalence and impact of residential-fires.
Benchmarking Computational Performance of Virtual Machines Within the Secure Unified Research Environment Versus Physical Computers
Authors: Moldovan Max , Radbone Chris , Inacio Maria C 
Published: December 2020

IntroductionThe Secure Unified Research Environment (SURE) is a high-powered computing environment located within Sax Institute (Sydney, Australia). SURE was established through the financial support of the Australian Government National Collaborative Research Infrastructure Strategy (NCRIS) as part of the Population Health Research Network (PHRN). SURE is approved by the Australian Government as the only secure platform for analysing unit record level sensitive health and other Australian Government data, providing computational resources and secure infrastructure in a form of virtual machines (VMs) accessible by approved researchers in Australia and overseas.
Objectives and ApproachWe aim to compare computational performance of SURE VMs of different configurations with the performance of physical computers by running a series of standardised computational tasks involving different numbers of central processingunit (CPU) cores available on each computer. The approach utilised the benchmark test maintained by the H2O.ai group (https://h2oai.github.io/db-benchmark/). The results were measured over the datasets of different sizes, ranging from 500MB to 50GB in Random Access Memory (RAM).
ResultsOur benchmarking outcomes have revealed that computational efficiency of physical computers uniformly outperform the efficiency of the current standard SURE VM configuration offerings, sometimes demonstrating a nearly double performance. For the range of typical analytical tasks assessed, computational performance greatly benefits from extending the number of computational cores available on a machine.
Conclusion / ImplicationsSURE is a highly valuable tool enabling research and collaborations involving confidential population-based data. The shortage of RAM and CPU cores can be a major bottleneck even for moderately large datasets. VMs currently offered by SURE yet fall short of reaching computational performance of physical desktop computers. The results are to guide the funders and providers of secure remote access data laboratories responsible for providing Research Infrastructure as a Service (IaaS) tailored to meet the needs of participating research groups.
Associations Between Regularity of General Practitioner Contacts and Adherence to Statin Therapy
Authors: Youens David 
Published: December 2020

IntroductionResearch has demonstrated continuity and regularity of general practitioner (GP) contacts to be associated with reduced hospitalisations and emergency department (ED) presentations. Opportunities for improved medication management are often cited as a potential causal mechanism, but little research has directly addressed this.
Objectives and ApproachTo determine associations between continuity of primary care and adherence with statin medications amongst individuals at risk of cardiovascular disease outcomes, taking statins through the exposure period of July 2011 - June 2012. We used self-report and administrative data from 267,153 participants of the 45 and Up Study conducted in New South Wales, Australia from 2006-2009. Medicare Benefits Schedule and Pharmaceutical Benefits Scheme data, from the Australian Government Department of Human Services, were linked to survey, hospital and death data by the NSW Centre for Health Record Linkage. Exposures were the Usual Provider of Care (UPC) index, i.e. the proportion of visits made to the usual GP; and a regularity index assessing whether patients were visiting the GP on a regular basis. Cox regression estimated associations between these exposures and time to cessation of statin medication, defined as a 30-day period without supply.
ResultsPreliminary findings amongst a cohort of approximately 48,000 indicated that increases in both regularity and continuity of primary care were associated with reduced likelihood of statin cessation. After controlling for socio-demographic and health status indicators the hazard ratio for cessation in the most regular quintile (baseline least) was 0.84 (95%CI 0.80 – 0.87) and in the highest continuity quintile was 0.93 (95%CI 0.89 – 0.96).
Conclusion / ImplicationsPrevious work assessed relationships between continuity of care and downstream hospital and ED outcomes. This work complements existing literature by assessing intermediate outcomes, aiding understanding of potential causal pathways. These findings are relevant given adherence to statin medication is often sub-optimal.
Western Australian Child Development Atlas: Visualising Data on Child Health, Education and Well-Being
Authors: Fuller Emma L , Bell Megan , Sims Sims , Glauert Rebecca , Ansell David 
Published: December 2020

IntroductionThe WA Child Development Atlas (CDA) is a unique resource that generates geographic profiles of the development, health and well-being of WA children. The CDA has been developed at the Telethon Kids Institute with funding from the Ian Potter and Minderoo Foundations and in partnership with government agencies and service providers.
Objectives and ApproachVisualisation of data within geographic boundaries helps to build a picture of ‘place’. This informs better decision making and underpins the development of evidence-based policy and service planning that acknowledges the differing needs of communities.
The CDA is an online, interactive mapping tool that utilises geographic information system (GIS) technologies to identify spatial patterns in population-level child and youth development indicators. Data are sourced from core health, social, and linked administrative datasets, from 1990 onwards. Aggregated, de-identified data on children and young people (0-24 years) and their parents are mapped within geographic boundaries across WA.
The CDA was piloted to ensure it is useful and relevant to a diversity of stakeholders. Extensive community consultation has been undertaken at all stages of the project. The CDA has been received favourably by consumers, government organisations, communities and researchers, with significant support for public launch.
ResultsThe CDA is a freely available, confidential and secure resource. Features of the CDA include: it is online and interactive (no software is required), area profiles, downloadable charts, tables and summary statistics, map panning and zooming. The Atlas has been used to generate community profiles and empowers all the people of WA with enhanced knowledge and understanding of the development of children.
Conclusion / ImplicationsThe CDA has built capacity to use spatial information, assisting agencies who make decisions relevant to child development and to facilitate cross-agency collaboration. It is an important and valuable resource utilising disparate data sources with significant public benefit.
Providing A Person-Centred View: Applying Linked Data to Government Policy Reform and Service Design
Authors: Williams Sharon , Cheng Kenneth , Sipthorp Mark 
Published: December 2020

The application of linked data by government has limited visibility due to complexities in publishing details of the analysis and interventions. The Victorian Department of Health and Human Services (DHHS) acknowledges the value of linked data in the department’s strategic plan, and linked data has been used in many policy reform and service design activities over the past three years.
IntroductionIn 2016 the Centre for Victorian Data Linkage (CVDL), located in DHHS, developed the Victorian Linkage Map (VLM) of 20 plus health and human services datasets linked with births and deaths data. The VLM has since been expanded to include education, justice and police data. DHHS has been an “early adopter” in applying linked data to policy development, service reforms and departmental operations to improve the health and wellbeing of the Victorian population.
Objectives and ApproachThe presentation will provide an overview of multi-sector data linkage in Victoria, and the value of frequent collaborations between CVDL and DHHS staff in applying linked data to priority projects and reforms. It will consider the challenges of cross-jurisdictional linkage in Australia, highlighting initiatives which are expanding linked datasets available to DHHS.
ResultsDHHS has undertaken a broad range of linked data projects which have provided an evidence base for departmental activities, including provision of hospital, housing, health surveillance and child protection services. Linked data has also been used to develop an integrated demand model, which forecasts impact of investment in one program area on other parts of the service system.
Conclusion / ImplicationsThe active use of linked data by DHHS provides a model for other government departments to improve service design and delivery to vulnerable populations. DHSS is expanding linked-data use to additional areas, and further imbedding in departmental operations.
The Impact of Musculoskeletal Conditions on Assessed Levels of Care Required by Older Australians
Authors: Gill Tiffany K , Wesselingh Steve , Inacio Maria C 
Published: December 2020

IntroductionMusculoskeletal problems, including conditions such as back pain, neck pain, rheumatoid arthritis, gout and osteoarthritis are common in the population and significant contributors to global disease burden. Age is one of the most common risk factors for musculoskeletal conditions and over 40% of older people accessing residential aged care have a musculoskeletal condition. It is not known whether individuals living in the community with musculoskeletal conditions have similar needs to those in permanent care and this is important to know in order to provide appropriate care.
Objectives and ApproachThe objective of this study was to profile individuals with musculoskeletal conditions in different aged care service settings (i.e. permanent care, community care only, transition/ respite care, or no services). Specifically, we examined the concurrent chronic conditions, health risk factors and functional limitations of individuals by service setting. A cross-sectional evaluation of individuals in the National Historical Cohort of the Registry of Senior Australians (ROSA) between 2004 and 2014 was conducted. Multivariable logistic regression models estimated the factors associated with being in different aged care settings. Odds ratios (OR) and 95% confidence intervals (CI) were determined.
Results401,026 (42.5%) individuals with musculoskeletal conditions were assessed for aged care service eligibility during the study period. Of these 197,181 (49.2%) accessed permanent care, 37,003 (9.2%) accessed home care, 54,826 (13.7%) transition/respite, and 112,016 (27.9%) - no care. Individuals accessing community care compared to residential care were more likely to be female, have pain and have difficulty maintaining their home, as were individuals accessing no services compared to residential care.
Conclusion / ImplicationsCompared to those in residential care, individuals with musculoskeletal conditions in the community with or without assistance had few differences related to other chronic conditions and functional limitations. But the reasons why some had support, while others did not, are unclear.
Pioneering Methods Developed to Investigate the Burden of Acute Rheumatic Fever and Rheumatic Heart Disease Using Multiple Linked Data Sources
Authors: Seth Rebecca , Bond-Smith Daniela , Katzenellenbogan Judith 
Published: December 2020

IntroductionAcute Rheumatic Fever (ARF) and Rheumatic Heart Disease (RHD) remain a major public health concern in Australia. Government action requires reliable burden estimates, however data from single or unlinked sources are only partial and likely to be skewed, exacerbated by systemic problems with ICD-10 codes for RHD. Linked data provide an opportunity to address these shortcomings.
Objectives and ApproachObjectives: to develop a methodology using harmonised linked data across five Australian jurisdictions to determine the burden of ARF and RHD <55 years, in particular robust case definitions for calculating incidence and prevalence.
For identifying RHD in hospital-only patients, validated case and non-cases from non-hospital sources were used with linked inpatient hospital admissions to develop a RHD prediction model. Additional data sources (register and surgery databases) were used to identify cases for reporting RHD prevalence. A unique ARF episode was defined as an ARF record >90 days from the previous one across both register and hospital data. For first-ever episodes we applied a lookback to mid-2001 for both ARF and RHD. For Western Australia, we evaluated the effect of look-back period on prevalence pooling.
ResultsFor total ARF incidence over 3 years (2015-2017), there was 1425 episodes compared to 1027 episodes for first-ever ARF. There was an annual average of 5241 cases of RHD identified using our new methods (0-54yrs) – substantially higher than 2634 and 4255 RHD cases reported by Global Burden of Disease Study and Australian Institute of Welfare estimates respectively for 2017. Increased lookback had no effect on first-ever ARF but increased RHD prevalence >25 years.
Conclusion / ImplicationsBy using multiple sources and cross-jurisdictional data we were able to provide contemporary and robust estimates for the burden of ARF and RHD in Australia. The prediction algorithm we developed can also be used in other countries, where only hospital data is available, to quantify RHD burden.
Idiopathic Intracranial Hypertension in Wales
Authors: Strafford Huw , Miah Latif , Fonferko-Shadrach Beata , Hollinghurst Joe , Rees Mark I , Sawhney Inder , Hadjikoutis Savvas , Powell Rob , Lacey Arron , Lacey Arron 
Published: December 2020

IntroductionIdiopathic Intracranial Hypertension (IIH) is a condition of unknown aetiology that is strongly associated with obesity. IIH predominantly affects women of childbearing age and causes chronic disabling headaches, visual disturbance and, in a minority of patients, permanent visual loss.
Objectives and ApproachWe characterised the IIH population, epidemiological trends and healthcare outcomes in Wales using routinely collected healthcare data. We used primary and secondary care healthcare diagnosis codes within the Secure Anonymised Information Linkage databank to ascertain IIH cases and controls in a retrospective cohort study between 2003 and 2017. We validated IIH diagnosis codes using anonymised secondary care lists of IIH cases.
ResultsWe analysed 35 million patient years of data (2003–2017). There were 1765 cases of IIH in 2017 (85% female). The prevalence and incidence of IIH in 2017 was 76/100,000 and 7.8/100,000/year, a significant increase from 2003 (corresponding figures=12/100,000 and 2.3/100,000/year). The odds ratio for developing IIH in the least deprived quintile compared to the most deprived quintile, adjusted for gender and Body Mass Index (BMI), was 0.65 (95% CI=0.55–0.76). 9% of people with IIH had CSF shunts with less than 0.2% having bariatric surgery. Unscheduled hospital admissions were significantly higher in the IIH cohort compared to controls (rate ratio=5.28, p<0.001) and in the people with IIH with CSF shunts compared to those without (rate ratio=2.02, p<0.01).
Conclusion / ImplicationsIIH incidence and prevalence is increasing significantly, corresponding to population increases in BMI, and is associated with increased deprivation. This has important implications for healthcare professionals and policy makers given the comorbidities, complications and increased healthcare utilisation associated with IIH.