bluuebunny/crossref_metadata_2025_split huggingface dataset:
The Stepping On Fall Prevention Program Scale-Up in NSW: Program Reach and Fall-Related Health Service Use
Authors: Paul Serene S , Li Qiang , Harvey Lara , Carroll Therese , Priddis Annabel , Tiedemann Anne , Clemson Lindy , Lord Stephen R , Close Jacqueline CT , Sherrington Cathie 
Published: December 2020

IntroductionFalls in older adults are associated with increased healthcare costs. Falls may be prevented or minimised with multifactorial interventions including exercise and behavioural modification.
Objectives and ApproachTo describe the reach of the scale-up of Stepping On, a fall prevention program targeting community-dwellers aged 65 years and older in NSW, Australia; and fall-related ambulance service use and fall-related hospitalisations after scale-up. Routinely-collected data on program reach, fall-related ambulance usage and fall-related hospital admissions in NSW residents aged ≥65 years between 2009 and 2015 were compared within Statistical Local Areas prior to and following implementation of Stepping On using multilevel models.
ResultsFrom 2009 to 2014 the program was delivered in 1,077 sites to 10,096 people with an average (SD) age of 81.0 (7.2) years. Rates of fall-related ambulance use and hospital admissions per 100-person-years were 1-2 in people aged 66-74, 4-5 in people aged 75-84 and 12-13 in people aged ≥85. These rates increased over time (p<.001). Overall, the interaction between time and program delivery was not significant for fall-related ambulance use or hospital admissions. The time-related increase in fall-related ambulance usage in people aged 75-84 years may have been moderated by Stepping On (RR 0.97, 95% CI 0.93–1.00, p=.045).
Conclusion / ImplicationsThere was no indication of either a reduced rate of fall-related ambulance use or hospital admissions across the entire sample. There was a suggestion of a reduction in ambulance call-outs for falls in people aged 75-84. The lack of a detectable impact on fall-related health service usage may be due to the use of routinely collected data not intended for research purposes or inability to remove those who would be ineligible for Stepping On from the data analyses. Increasing the program reach and targeting groups contributing most to health service utilisation may improve program outcomes.
Transformation of Data Access Models In BC
Authors: Roine Alexandra , Galo Jessica , Kim-Bautista Maria , Medearis Melissa , Wong Michelle , Choi Tim 
Published: December 2020

IntroductionThe current data access model in BC involves project-specific applications and data provisioning. The timeline from application to provisioning is 6-8 months. Novel initiatives including Program of Research (POR), Core Data Sets (CORE), and Data Reuse are being explored and evaluated.
Objectives and ApproachWe aim to develop data provisioning models that improve efficiency and access timelines by reducing process duplication and adopting open and flexible approaches to data use while ensuring data privacy.
ResultsPOR allows researchers to access broad programmatic data that fulfills data requirements for multiple thematically-linked projects. While we provision the program data, a research team data manager extracts the project-specific data from the program dataset. A pilot program with two active projects is ongoing. The timeline from application to program data provisioning was 8 months. Project data was delivered in 2-3 months.
CORE is a transformative data provisioning model that allows researchers to access entire data sets that contain a group of pre-approved and non-sensitive data variables for the BC population for all available years. This decreases the possibility of variable omission which is prevalent under the existing process. Additionally, this model allows researchers the flexibility to identify their cohort using their preferred methodology.
Data Reuse allows re-use of data between similar projects conducted by the same investigator. Projects were surveyed for similar objectives, investigators and data requirements. Similar projects were grouped and analyzed to evaluate pre-implementation timelines. Application to provisioning timeline for one group of six projects ranged from 7-18 months. Post-implementation timelines will be evaluated once Data Reuse is implemented.
Conclusion / ImplicationsThese new initiatives have shown promising results in access efficiency and data privacy in the pilot phase. Continuous process and privacy evaluations are involved and ongoing collaborations with the data providers and researchers are required prior to full implementation.
Measuring Dementia Incidence Within A Cohort Of 267,153 Older Australians Using Routinely Collected Linked Administrative Data
Authors: Welberry Heidi J , Brodaty Henry , Hsu Benjumin , Barbieri Sebastiano , Jorm Louisa R 
Published: December 2020

IntroductionThere is no gold standard method for monitoring dementia incidence in Australia. Routinely collected linked administrative data are increasingly being used to monitor endpoints in observational studies and clinical trials and could benefit dementia research.
Objectives and ApproachThis study examines dementia incidence within different Australian administrative datasets and how characteristics vary across datasets for groups detected as having dementia. This was an observational data linkage study based on a prospective cohort of 267,153 people in New South Wales, Australia from the 45 and Up Study. Participants completed a survey in 2006-2009 and dementia was identified using linked pharmaceutical claims (provided by Services Australia), hospitalisations, assessments of aged care eligibility, care needs at entry to residential aged care and death certificates. Data linkage was undertaken by the Centre for Health Record Linkage (CHeReL) and the Australian Institute of Health and Welfare. Age-specific and age-standardised incidence rates, incidence rate ratios and survival from first dementia diagnosis were calculated.
ResultsAge-standardised dementia incidence was 16.9 cases per 1000 person years (PY) for people aged 65 years and over. Estimates for those aged 80-89 years were closest to published incidence rates (91% of rates for high-income countries). Relationships with dementia incidence were inconsistent across datasets for characteristics including sex, relative socio-economic disadvantage, support network size, marital status, functional limitations and diabetes. Median survival from first pharmaceutical claim for an anti-dementia medicine was 3.7 years compared to 3.0 years from first aged care eligibility assessment, 2.0 years from a dementia-related hospitalisation and 1.8 years from first residential aged care needs assessment.
Conclusion / ImplicationsPeople identified with dementia in different administrative datasets have different characteristics, reflecting the factors that drive interaction with specific services. Bias may be introduced if single data sources are used to identify dementia as an outcome in observational studies.
Hepatitis C in South Australia And Northern Territory: A Population-Based Linkage Study
Authors: Stephens Jacqueline H , Bradley Clare , Elliott Salenna , Dore Gregory , Grebely Jason , Alavi Maryam , Kennedy Brendan , Tong Steven , Ward James 
Published: December 2020

IntroductionIn Australia, the notification rate for hepatitis C is 5 times greater among Aboriginal and Torres Strait Islander peoples than non‑Indigenous populations (164 vs. 35 per 100,000). Infection with Hepatitis C virus is associated with increased morbidity, mortality and health-related costs. Recently, the use of simple, tolerable and short-duration HCV therapies with extremely high efficacy (cure rates >90%) became available through the Pharmaceutical Benefits Scheme (PBS) on 1 March 2016.
Objectives and ApproachOverall, this project aims to identify inequities in hepatitis C healthcare for Aboriginal and Torres Strait Islander peoples across SA and NT. By using 19 routinely collected health administration datasets, we will evaluate hepatitis C diagnoses, treatment uptake, and treatment outcomes, with focus on identifying patterns in healthcare access among Aboriginal and Torres Strait Islander people. The study links state-based and federal datasets, including Medicare, Pharmaceutical Benefits Scheme, and National Mortality Database, to hepatitis C notifications reported in SA since 1992 or in NT since 1999 using probabilistic data linkage methodology in a secured online environment.
ResultsThe study population includes all hepatitis C notifications recorded in SA and NT, totalling more than 25,000 cases. Preliminary findings will be reported including incidence of hospitalisation, mortality, and morbidity by Aboriginal and Torres Strait Islander status.
Conclusion / ImplicationsThis project is of national importance to address hepatitis C related morbidity and mortality in Australia, particularly among Aboriginal and Torres Strait Islander peoples. Now that highly effective direct acting anti-viral treatments are available, it is crucial to ensure key affected populations, including Aboriginal and Torres Strait Islander people, have access to these novel biomedical approaches. Findings will underpin future policy to reduce the burden of hepatitis C across SA and NT populations.
Identification of Determinants of Resilience in Children Using Administrative Health, Social, Justice and Education Data
Authors: Durksen Anita , Brownell Marni , Nickel Nathan 
Published: December 2020

IntroductionResilience is a key factor in healthy development of children who have experienced adversity in early life. Current methods of assessment involve using questionnaires - few of which are appropriate for young children, most are time consuming and rely on parent recall, thereby introducing bias. Additionally, widespread implementation of these would be costly, making population-level assessment of resilience impractical. The current study will leverage multi-sector, linkable, whole-population data from health, education, justice and social services to explore alternative ways to assess resilience in children.
Objectives and ApproachThe purpose of this study is to identify factors in administrative data that emerge as significant determinants of resilience, demonstrated by children who experience adversity in early life but develop normally. Children born in Manitoba between 2000-2012 will be included. Adversity will be identified as families receiving income assistance, and/or the presence of adverse childhood experiences (ACEs) in linked databases such as Justice (incarcerated parent) and Health (parent with mental or substance use disorder). Development will be measured using the Early Development Instrument (EDI). EDI outcomes will be assessed according to severity and frequency of adversity. Pre-identified covariates that map onto sub-constructs of resilience will be assessed using multivariable linear regression to determine whether they are associated with higher EDI scores in the context of adversity.
ResultsThe identification of administrative data variables associated with resilience in children will serve as a valuable tool for population-level assessment of resilience among children who experience adversity at young ages.
Conclusion / ImplicationsWhile complete eradication of childhood adversity is unlikely, the continued development of programs and policies that build resilience in children is crucial. The results of this study will provide a means for population-level evaluation of such programs and policies, ultimately improving evidence for policy and decision-makers in the area of child development.
Developing Best Practice in Linking and Sharing Administrative Data – A Comparison of Views in Health and Higher Education
Authors: Street Jackie , Braunack-Mayer Annette , Carter Stacy , Ha Tam , Feng Xiaoqi , Carolan Lucy , Fabrianesi Belinda 
Published: December 2020

IntroductionLarge administrative datasets are now being used for secondary purposes across a wide range of public sector organisations, including in health and higher education. However, governance, regulation and policy surrounding the use of these datasets are at different stages of development in these sectors. Our aim was to explore similarities and differences in the use of administrative data between the health and higher education sectors to inform policy development.
Objectives and ApproachWe investigated views on the use of administrative data in both the health and higher education sectors. We conducted 18 qualitative in-depth interviews with key stakeholders, to provide insight into the ethical, social and legal issues associated with the use of big data in these settings. The interviews were transcribed and thematically coded.
ResultsParticipants indicated the rapid pace of technological change and large volume of potentially sensitive data collected raises governance, infrastructure and ethical issues in both settings. Common challenges include communication, staff capabilities, delays in access, multiple policies and governance committees, and technical and operational issues. In the health sector, there was clear understanding of the issues and governance structures to address these issues, whereas this understanding was more variable in the higher education sector. Trust in government (to use responsibly and store securely) was raised in the health sector but not in universities.
Conclusion / ImplicationsUnderstanding and use of administrative data are at quite different levels of development in the higher education and health sectors. Higher education needs policy and ethical guidance and higher level governance and greater consultation across the sector. Both sectors would benefit from a national approach to data governance.
Costs of Hospitalisation Due to Stroke: Linked Registry and Administrative Clinical Costing Study
Authors: Kim Joosup 
Published: December 2020

IntroductionRoutine clinical costing of hospital care provided for a representative sample of patients informs a national price for hospital reimbursement according to the diagnosis related group of a patient. These clinical costing data are available for linkage as part of hospital administrative datasets.
Objectives and ApproachThe Australian Stroke Clinical Registry (AuSCR) is a national data collection program used to monitor the quality of care provided to patients who have been hospitalised with a clinical diagnosis of stroke or transient ischaemic attack (TIA). For the Stroke123 project, registrants from the Australian Stroke Clinical Registry in 2009-2013 were linked to hospital administrative datasets in four states (Victoria, Queensland, New South Wales and Western Australia). Clinical costing data were obtained for the cohort in Queensland only. Using these clinical costing data, we aimed to determine the costs of hospitalisations according to clinical and demographic characteristics of patients. Reliability of clinical costing data were tested by assessing the association with disease burden and length of stay using multivariable linear regression analysis.
ResultsOf the 5522 patient episodes (from 23 hospitals), clinical costing data were available for 3909 (71%, from 22 hospitals). Patients with clinical costing data were more often aged <65 years (30% vs 24%, p<0.001) and more often male (56% vs 49%, p<0.001) than those without these data. Mean cost of an episode was $12,129. Episodes of intracerebral haemorrhage had a mean cost of $18,315, which was greater than the mean costs of ischaemic stroke ($13,925), TIA ($5,247) and undetermined stroke ($8,996). Greater costs were associated with greater disease burden according to the Charlson Comorbidity Index (p<0.001) and length of stay (p<0.001).
Conclusion / ImplicationsIntegration of clinical quality data and costs will enable more holistic assessment and monitoring of the effects of quality improvement initiatives and therapeutic advances.
Exploring the Collection and Use of Health Data for Smart Cities Initiatives
Authors: Cartagena Rosario G , Victor Charles , Ross Kelley , Scrivens Emily 
Published: December 2020

IntroductionICES is an entity in Ontario, Canada that collects and uses the personal health information (PHI) of individuals for evaluation, planning and monitoring of the provincial health system. It currently does not have legal authority to collect PHI from, or disclose PHI to, municipalities for the purpose of supporting evidence-based policymaking and enabling “Smarter Cities”.
Objectives and ApproachTo assess how ICES could allow municipalities to access PHI, while maintaining strong privacy and security data protection, we first: (i) explored the legal data trust model as a vehicle for broader collection and use of municipal data, and (ii) analyzed the regulatory changes and type of framework that would enable broader access and use of PHI by municipalities. Following this and to demonstrate the value of access to ICES data for municipal planning, we identified a case project involving a municipal health stakeholder. Leveraging ICES’ remote access model, two local public health analysts performed analytics on de-sensitized, individual-level data in a secure analytic environment.
ResultsWe determined that a legal data trust is not the appropriate model for the type of data sharing envisioned, but rather, a data governance and ethical use framework complimentary to a new legal regime for Smart Cities would be optimal. In Phase II the local municipal partner was able to identify several use cases for the ICES data that would support local policy making; access to these data was considered a critical enabler to improved evidence-based decision making.
Conclusion / ImplicationsAllowing municipal policy makers to use data under a complimentary framework to a new legal regime, may improve policy and produce direct economic impact for municipalities where evidence needed for decision-making is lacking; representing a practical step forward towards Smart Cities.
Person Spine Linkage Methodology and Maintenance
Authors: Frazer Brett 
Published: December 2020

IntroductionAs there is no single unique identifier for Australians across government datasets, commonwealth and state data must be brought together using data integration methods. The ABS has developed the Person Linkage Spine (the 'Spine') as an enduring piece of data linking infrastructure that is the core of the Multi-Agency Data Integration Project (MADIP) data asset, and is used to combine person-centred datasets.
Objectives and ApproachThe Spine was created using a staged deterministic linkage process combining three core datasets: Medicare Consumer Directory, Social Security and Related Information, and Personal Income Tax. The Spine aims to broadly cover all people resident in Australia at any point during the reference period of 2006 to 2019. The Spine is used in combination with anonymised name and address history information from the core datasets to facilitate linkage of datasets to the Spine from any time period within its scope.
The Spine was recently updated with new data from the core datasets in a 'Spine Maintenance' process, a key part of which involves the use of graph based methods to identify spine elements requiring updating in the new version. Spine Maintenance was conducted in such a way as to ensure consistency between Spine versions, enabling linkages to be conducted and retained across different versions of the Spine, whilst still allowing for improvements to the Spine based on updated information. This talk will focus on the methodological challenges associated with creating, using and maintaining the Person Linkage Spine.
ResultsThe Spine has been successfully utilised as the core of the MADIP data asset, enabling valuable longitudinal person centred analysis.
Conclusion / ImplicationsThe Spine has created a foundational linking infrastructure which is a sound basis for extending across time (longitudinally) and expanding to include datasets from across a broad range of sectors and jurisdictions.
Demonstrating the Utility of New Linked National Health Survey and Administrative Data: Secondary CVD Prevention in The Community
Authors: Butler Danielle , Butler Hsei Di , Paige Ellie , Moon Lynelle , Banks Emily , Korda Rosemary J 
Published: December 2020

IntroductionCardiovascular events are largely preventable though access to timely quality primary health care and use of guideline-recommended medication. However, around half of Australians with cardiovascular disease (CVD) are not receiving best practice treatment. This study aims to identify factors associated with under treatment, using National Health Survey (NHS) linked for the first time to administrative health data.
Objectives and ApproachParticipants with self-reported CVD in the NHS 2014-15 were included in the study, with data linked to Medicare (MBS) and pharmaceutical (PBS) data by the Australian Bureau of Statistics through the Multi-Agency Data Integration Project (MADIP). Use of primary and specialist ambulatory care and blood pressure- and lipid-lowering medications and their relation to sociodemographic and health characteristics were quantified using logistic and Poisson regression analyses.
Results1100 participants with self-reported CVD were available for analysis, with linkage rates for NHS data to a Person Linkage Spine of 95%. We will present our findings from adjusted regression models (incomplete at time of abstract submission).
Conclusion / ImplicationsThe nationally representative linked data developed under this project provides a unique opportunity to quantify and identify points to improve access to best practice CVD care, with the ultimate aim of preventing secondary CVD events in the population. Findings will also inform optimal use of MADIP data by the research community in order to answer questions of national importance and provide robust evidence to drive improvement in health and health care.
Validating Australian Government Medicare Benefits Schedule Data Against the National Joint Replacement Registry Data
Authors: Pratt Nicole , Duszynski Katherine , Gulyani Aarti , Graves Stephen E 
Published: December 2020

IntroductionTo enhance the value of the Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) we recently linked these data with administrative datasets including, Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS). Understanding the validity of administrative data is important in establishing the reliability of these data for informing clinical practice and policy.
Objectives & ApproachThe study objective was to determine the validity of MBS data for capturing the occurrence of a joint replacement procedure. Using the AOANJRR procedures as the gold standard, we determined the sensitivity of the MBS data in correctly identifying hip joint replacement procedures.
ResultsOf the 178,047 patients with a single primary total hip replacement occurring in a private hospital setting and recorded in the AOANJRR, 76% had a same-day MBS service claim indicative of that procedure, 2% had MBS procedures within +/- 7 days of the procedure while 18% had no MBS procedure codes indicative of a total hip joint replacement procedure. Of the procedures with no total hip MBS codes, 2% had MBS procedures codes indicating a total knee procedure, 1.7% had MBS procedure codes indicating a revision hip on that day and 13% of procedures had an in-hospital MBS hip anaesthetic administration code claimed on that day.
Conclusion / ImplicationsGiven the increasing application of MBS data to describe health service use it is important to understand the validity of these data for identifying procedures undertaken in the private hospital setting. Using validated, gold standard data captured by the AOANJRR we identified that MBS data likely underestimate the occurrence of total hip replacement procedures. In addition, some MBS procedure codes are misattributed to other procedure types such as knee procedures and revision procedures.