bluuebunny/crossref_metadata_2025 huggingface dataset:
Use of Data Linkage Method to Compile Life Tables for Aboriginal and Torres Strait Islander Australians
Authors: Shahidullah Mohammed
Published: December 2020

IntroductionAlmost all deaths of Aboriginal and Torres Strait Islander Australians are registered, but some are not identified and recorded as such when registered. Therefore, registration data underestimates the actual number of deaths and death rates of Aboriginal and Torres Strait Islander Australians, and consequently their application can result in overestimates of life expectancy.

Hence registered deaths needs to be adjusted before deriving life tables and life expectancy estimates.

Objectives and ApproachObjective: To develop a data-driven method for estimating factors for adjusting registered deaths.

Approach: The Australian Bureau of Statistics (ABS) linked Census records to all deaths that were registered within a year following the Census. Adjustment factors were estimated by directly comparing Indigenous status of a person reported in Census and death registration data. The ABS then used an established and widely used method to compile life tables, by making up-front adjustments to registered deaths by the factors derived from the Census and deaths linked dataset.

ResultsAboriginal and Torres Strait Islander deaths identification rate in registration data was estimated to be 89% at the national level in 2016-2017. Over the same period, identification rates varied considerably by state/territory and ranged between 0.69%-1.04%. It clearly showed the need to adjust for under/over identification in Aboriginal and Torres Strait Islander death registrations.

Conclusion / ImplicationsStatistical data linkage methods can successfully be used to improve Aboriginal and Torres Strait Islander Australians life expectancy estimates. This has implications for accurately measuring and monitoring the Council of Australian Governments’ ‘Closing the Gap’ target in life expectancy estimates between Aboriginal and Torres Strait Islander and non-Indigenous populations.
Introducing Health Data Research Network Canada (HDRN Canada): A New Organization to Advance Canadian And International Population Data Science
Authors: McGrail Kimberlyn , Diverty Brent , Lix Lisa
Published: December 2020

IntroductionNotwithstanding Canada’s exceptional longitudinal health data and research centres with extensive experience transforming data into knowledge, many Canadian studies based on linked administrative data have focused on a single province or territory. Health Data Research Network Canada (HDRN Canada), a new not-for-profit corporation, will bring together major national, provincial and territorial health data stewards from across Canada. HDRN Canada’s first initiative is the $81 million SPOR Canadian Data Platform funded under the Canadian Institutes of Health Research Strategy for Patient-Oriented Research (SPOR).

Objectives and ApproachHDRN Canada is a distributed network through which individual data-holding centres work together to (i) create a single portal and support system for researchers requesting multi-jurisdictional data, (ii) harmonize and validate case definitions and key analytic variables across jurisdictions, (iii) expand the sources and types of data linkages, (iv) develop technological infrastructure to improve data access and collection, (v) create supports for advanced analytics and (vi) establish strong partnerships with patients, the public and with Indigenous communities. We will share our experiences and gather international feedback on our network and its goals from symposium participants.

ResultsIn January 2020, HDRN Canada launched its Data Access Support Hub (DASH) which includes an inventory listing over 380 datasets, information about more than 120 algorithms and a repository of requirements and processes for accessing data. HDRN Canada is receiving requests for multi-province research studies that would be challenging to conduct without HDRN Canada.

Conclusion / ImplicationsThus far, HDRN Canada services and tools have been developed primarily for Canadian researchers but HDRN Canada can also serve as a prompt for an international discussion about what has/has not worked in terms of multi-jurisdictional research data infrastructure. It can also present an opportunity for the development of metadata, standards and common approaches that support more multi-country research.
Case Study for Stroke: National Stroke Data Linkage Program
Authors: Kilkenny Monique F , Kim Joosup , Dalli Lachlan , Eliakundu Amminadab , Olaiya Muideen
Published: December 2020

IntroductionStroke is a leading cause of death and disability. Since 2012, our innovative national data linkage program, has enabled the successful linkage of data from the Australian Stroke Clinical Registry (AuSCR) with national and state-based datasets to investigate the continuum of stroke care and associated outcomes.

Objectives and ApproachUsing stroke as a case study, in this symposium we will describe the use of linked data to undertake clinical and economic evaluations and contribute new knowledge for policy and practice. We have undertaken a range of iterative and innovative projects linking the AuSCR (used now in >80 public hospitals across Australia with follow-up survey of patients between 90-180 days) with various administrative datasets. Linkages with the National Death Index, inpatient admissions and emergency presentations, Pharmaceutical Benefits Scheme (PBS), Medicare Benefits Schedule (MBS), Aged Care services; Ambulance Victoria, Australian Rehabilitation Outcomes Centre and general practice network datasets (POLAR) have been achieved.

ResultsThe symposium will provide case studies and results from four data linkage projects involving the AuSCR: 1) Stroke123 (NHMRC: #1034415), a study to investigate the impact of quality of acute care on admission/emergency presentations and survival; 2) PRECISE (NHMRC:#1141848), a study to evaluate models of primary care involving linkages with PBS/MBS, aged care services and admissions/emergency data; 3) AMBULANCE: a study to investigate how pre-hospital care affects acute stroke care involving linkages with the ambulance and admissions/emergency datasets; and 4) POLAR: a study to understand the long-term management of stroke involving linkages with primary health data.

Conclusion / ImplicationsThe National Stroke Data Linkage Program has been visionary and remains highly contemporary in the field of linked data. A unique feature of this program is the active participation of clinicians and policy-makers to ensure the evidence generated have direct benefits for accelerating change in practice and informing policy.
Association Between Optimal Combination Pharmacotherapy and Survival After Stroke: A Registry and Pharmaceutical Dispensing Study
Authors: Kilkenny Monique F , Dalli Lachlan L , Kim Joosup , Andrew Nadine E , Sanfilippo Frank M , Sundararajan Vijaya , Dewey Helen M , Grimley Rohan , Thrift Amanda G , Cadilhac Dominique A
Published: December 2020

IntroductionTo prevent further vascular events, prescribing of multiple classes of medications (antihypertensive, antithrombotic and lipid-lowering) is recommended in national clinical guidelines following ischaemic stroke.

Objectives and ApproachUsing real-world data, we determined the association between optimal combination pharmacotherapy (supply of all three classes, “optimal pharmacotherapy”) and survival after stroke. We linked a cohort of patients with first-ever ischaemic stroke from the Australian Stroke Clinical Registry (2010-2014) with national pharmaceutical dispensing and national mortality data. Cox regression was used to determine associations between pharmacotherapy in the first 30 days of stroke with 1-year (from day 31 to 395) all-cause mortality. All analyses were adjusted for socio-demographic (age, sex) and clinical characteristics (stroke severity, discharge destination).

ResultsAmong 6684 patients discharged following first-ever ischaemic stroke (median length-of-stay 5 days), 6466 patients who survived to 30 days were included (44% female, median age 74 years). During the first 30 days from discharge, 71.4% received ≥1 medication class, and 32.9% (n=2125) received optimal pharmacotherapy. Patients with optimal pharmacotherapy were older (≥75 years 50.3% vs <75 years 44.5%; p<0.001), discharged directly home (home 58.5% vs other 40.3%; p<0.001) and experienced a less severe stroke (able to walk on admission 46.9% vs 36.4%; p<0.001), than those without optimal pharmacotherapy. Between day 31 and 395, there were 667 deaths; 530 related to cardiovascular disease. Compared to no medication, treatment with two medications was associated with a 42% lower risk of death (hazard ratio [HR]: 0.58; 95%CI: 0.45-0.73); and optimal pharmacotherapy had a 62% lower risk of death (HR: 0.38; 95% CI: 0.31-0.47). Survival was similar between those with one or no medication.

Conclusion / ImplicationsPatients with ischaemic stroke who received optimal pharmacotherapy within 30-days of admission had greater one-year-survival. Further research is required to understand reasons for sub-optimal pharmacotherapy in these patients.
The Impact of Family and Domestic Violence on Children’s Early Developmental Outcomes
Authors: Orr Carol , Fisher Colleen , Glauert Rebecca , Preen David , O’Donnell Melissa
Published: December 2020

IntroductionChildren have a universal right to live free from exposure to family and domestic violence (FDV). Young children (<6-years) are at greater risk of exposure to FDV due to the time spent in the family home and parental dependence. Despite the limited empirical literature, it is acknowledged that FDV exposure can impact a child’s developmental outcomes with respect to social competence including social, emotional, and cognitive skills.

Objectives and approachOur cohort study used longitudinal population-level data from Western Australia Police and hospital data to identify FDV, these datasets were genealogically linked to the children and their Australian Early Development Census (AEDC) to investigate the early development outcomes of Western Australian children born 2002-2010 (N=6,955).

Our aim was to determine if children exposed to FDV had greater vulnerability in early development outcomes as measured by the Australian Version of the Early Development Instrument (used in the AEDC), in the child’s first year of formal schooling (2009-2015).

Multivariate logistic regression was used to estimate the odds of children exposed to FDV being classed as developmentally vulnerable in each of the five AEDC development domains: physical health and wellbeing; social competence; emotional maturity; language and cognitive skills (school-based) and; communication skills and general knowledge. Models were adjusted for a range of covariates known to impact developmental outcomes.

ResultsChildren exposed to FDV had between 42% and 69% higher odds than non-exposed children of being developmentally vulnerable in the five domains. Additionally, children exposed to FDV had significantly higher odds of being developmentally vulnerable in two or more domains compared to children who were not exposed (adjustedOR 1.70; 95%CI 1.46-1.97).

ConclusionsExposure to FDV increases the odds of vulnerability in early development outcomes. Early intervention for children exposed to FDV to mitigate the impact on outcomes, and ultimately the need to prevent FDV is clearly needed.
Higher Education Completion Rates for Domestic Undergraduate Students Who Access Mental Health Services Using A Multi-Agency Matched Population Cohort
Authors: Cowie Lewis , Hendrickson Luke
Published: December 2020

By linking Education, Health, and Welfare data in the Multi-Agency Data Integration Project (MADIP), our analysis looked at the impact of poor mental health on the likelihood of completing an undergraduate degree in Australia.

IntroductionCompletion of a bachelor degree is important to both the student and the government, as it provides lifelong benefits and prevents investment loss. Previous research has reported conflicting findings regarding whether students with mental ill health are less likely to complete a degree, with an estimated 25 per cent of young adult university students experiencing mental ill-health each year.

Objectives and ApproachOur research analysed national mental health service use and related pharmaceutical prescriptions linked with education data to determine the extent and effect of known mental health conditions on undergraduate student six-year completion rates. We followed a de-identified cohort of 120,000 students who commenced an undergraduate degree for the first time in 2011 for six years. Summary statistics and a binomial logit was used on a matched sample to confirm significance.

ResultsWe found that students with a known mental health condition had a significantly lower six-year completion rate (58 per cent) than those students with no known mental health condition (71 per cent). By simulating a randomised control trial controlling for a wide range of demographics, we showed that these results held and that completion rates worsened with increasing severity of mental health conditions, as measured by usage of psychiatric services.

ConclusionIntegrated data assets such as MADIP help us better understand the interaction between student success and mental health conditions which in turn will help us improve policy and better evaluate programs.
Association Between Use of Statins and Survival After Stroke: Real-World Data from The Australian Stroke Clinical Registry
Authors: Dalli Lachlan L , Kim Joosup , Cadilhac Dominique A , Andrew Nadine E , Sanfilippo Frank M , Thrift Amanda G , Sundararajan Vijaya , Kilkenny Monique F
Published: December 2020

IntroductionDespite being recommended in clinical guidelines for secondary prevention of stroke, there are limited real-world data on outcomes associated with use of statins post-stroke.

Objectives and ApproachWe aimed to investigate the association between statin use and cardiovascular mortality post-stroke. We conducted a retrospective cohort study using prospectively collected data from the Australian Stroke Clinical Registry (2010-2014), linked with national medication dispensing and mortality data. We observed adult patients with first-ever ischaemic stroke or transient ischaemic attack (TIA) for 1-year following hospital discharge, or until their date of death, whichever occurred first. Statin use, defined as having an available statin dispensing, was assessed daily and treated as a time-varying exposure to account for patients who discontinued or reinitiated statins during follow-up. Multivariable, competing-risks regression, with non-cardiovascular death as the competing risk, was used to investigate the association between statin use and 1-year cardiovascular mortality.

ResultsAmong 8363 patients discharged following first-ever ischaemic stroke or TIA (48% aged ≥75 years, 45% female, 20% TIA, median length-of-stay 5 days), 945 died within 1 year, with 763 deaths being cardiovascular-related. The proportion of statin users was 65% at 90 days, 64% at 180 days, and 62% at 1 year. Groups least likely to be statin users at 1-year were women (odds ratio [OR]: 0.75; 95% CI: 0.67-0.85), patients aged <65 years (OR: 0.80; 95% CI: 0.69-0.92), and those discharged directly home (OR: 0.77; 95% CI: 0.67-0.88). Compared to non-use, use of statins was associated with a reduced risk of cardiovascular mortality within 1 year overall (sub-distribution hazard ratio [SHR]: 0.40; 95% CI: 0.34-0.46), and in sub-groups of patients with TIA, severe stroke, and advanced age.

Conclusion / Implications:Our preliminary data provide evidence of survival benefits associated with post-stroke statin use. Interventions to improve medication adherence may assist in reducing post-stroke mortality.
Using Linked Administrative Health and Family Court Data to Evaluate Maternal Mental Health-Related Risk Factors for Repeated Child Removals
Authors: Pearson Rachel J , Bedston Stuart , Wijlaars Linda , Gilbert Ruth
Published: December 2020

IntroductionEvidence suggests that many women whose children enter care via family court proceedings (care proceedings) in England experience mental health and substance misuse problems. Further, an estimated 22% of women will return to court within 5 years for subsequent proceedings, often returning quickly with a new infant and with little time to address underlying health-related problems. With growing pressures on England’s family justice system and the wider children’s social care sector, there is a need to identify opportunities to engage with women in a healthcare setting to reduce the likelihood of (recurrent) care proceedings.

Objectives and ApproachWe used linked family court and mental health service data (n = 2843) for mothers who were referred to mental health services and were involved in care proceedings in South London between 2007 and 2019. We (1) describe differences in the frequency, type and timing of mental health and addictions service use between mothers who return to court and those who do not and (2) evaluate risk/protective factors for returning to court.

ResultsAfter resolving duplicate matches (n = 2808), 1028 women (36.6%) referred to mental health services over the study period subsequently returned to court. We will describe differences in characteristics of service use and care proceedings between women who return to court and those that do not. We will also explore a range of potential risk/protective factors for returning to court, including maternal age at first child, indicators for failure to engage with services, mental disorder type, substance misuse, and maternal neighbourhood deprivation status.

Conclusion / ImplicationsBetter understanding of how women use mental health and addictions services before, during and after proceedings, and identification of key risk/protective factors for returning to court, would inform strategies to reduce recurrent involvement in care proceedings among this population group.
Factors Associated with Unplanned Admission to Hospital: A National Time-To-Event Analysis of Over 65s In Scotland
Authors: Henderson David , Atherton Iain , McCowan Colin , Mercer Stewart , Bailey Nick
Published: December 2020

IntroductionMany high-income countries are reorganising and integrating health and social care (long-term care) services. However, little evidence exists showing how these services interact. Demographic changes and austerity measures have led to increased demand for social care services at the same time as the  availability of formal and informal services has declined. The aim of this study was to identify risks for unplanned hospital admission taking account of social care receipt, multimorbidity and sociodemographic status.

Objectives and ApproachThis retrospective, observational study included all individuals over the age of 65 in Scotland in financial year (Apr-March) 2015/16 (n = 879,027). The main outcome was time to first unplanned hospital admission. Kaplan-Meier curves were plotted to compare survival rates. Cox proportional hazards regression models were used to determine risk factors for unplanned admission. Explanatory variables included: receipt of social care, multimorbidity, socioeconomicposition, age, and sex.

ResultsMultivariate analysis showed that, after adjusting for: age, sex, multimorbidity, socioeconomic position, and any past unplanned admissions, receipt of social care was associated with a two-fold increased risk of having an unplanned admission compared to those without care (HR 1.98 95%CI 1.95-2.00). Increasing age, severity of multimorbidity, and lower socioeconomic position were also all associated with increasing risks of unplanned admission.

Conclusion / ImplicationsOur results show those in current receipt of social care are also more likely to use unplanned hospital care compared with those that do not receive care. Current provision of social care services is unlikely to lead to reductions in unplanned hospital admission.
Using Integrated Administrative Data to Support A Field Enumeration Census: The Case of The New Zealand 2018 Census
Authors: Bycroft Christine , Morgan Abby , Matheson-Dunning Nathaniel
Published: December 2020

IntroductionThe New Zealand 2018 Census faced major challenges when implementing a new collection model, leading to a lower than expected response rate. The scale of the non-response meant planned methods for unit imputation were unlikely to be suitable, and new methods were developed to use administrative sources to count those who had been missed by the census field collection.

Objectives and ApproachThis innovative approach was made possible because of the extensive linked administrative data available in Stats NZ’s Integrated Data Infrastructure, the IDI,and built on previous research that had developed an administrative New Zealand resident population. New statistical methods were developed to account for known limitations of the administrative sources.

ResultsAdministrative records were successfully incorporated into the census dataset producing New Zealand’s first ‘combined census’. Assessment against benchmark population distributions and sensitivity analysis indicate that the results are close to what is expected. Stats NZ is confident it has compiled acensus dataset that will provide census usually resident population counts and electoral counts of acceptable quality.

Legal, security and privacy issues have been carefully assessed and managed, although there remain outstanding questions about ‘social license’.

Conclusion / ImplicationsAdministrative data does include many people who are typically hard to count through census field collection, and makes a significant quality improvement over previous census methods for non-response adjustment. A similar approach will be used to mitigate for non-response in the next census.

The lower than expected response rates and new data and methods have brought increased scrutiny of the census results. A different error structure from previous censuses (including improved counts of formerly under-counted ethnic groups) has disrupted time series for many variables.
Estimating Maternal Mortality Rates During The 1918 Flu Using Birth to Death Linkage
Authors: Christen Peter , Garrett Eilidh , Nowok Beata , Reid Alice , Williamson Lee , Dibben Chris
Published: December 2020

IntroductionThe Digitising Scotland project (https://digitisingscotland.ac.uk/) has transcribed all Scottish birth, death, and marriage certificates from 1855 to 1974. The linkage of these data will provide formidable challenges for linkage experts and a multitude of opportunities for health and social science researchers.

Objectives and approachWe linked birth between November 1916 and December 1923 to death of women aged 15 to 49 who died between January 1917 and December 1923. We only linked a death up-to 42 days after a birth. We compared parent names with those of the deceased and her spouse, as well as their address, using string matching functions. Given the lack of ground truth data, we conducted a sensitivity analysis using different similarity thresholds to classify birth linked to death as matches (if their similarity was at least a given threshold), or otherwise as non-matches. We then calculated the maternal mortality rate (MMR) on a monthly basis for January 2017 to July 2018 (the pre-flu period), and October 1918 to March 1919 (the flu period) as the number of matched birth to death certificates divided by the average monthly number of birth in the month of death and the previous month.

ResultsPuerperal risk of death during this period was much higher than for the comparable female age group during the different phases of the 1918 flu. During the October 1918 wave, puerperal women were at greater risk than women of the same age, while the risk dropped below the expected in the summer of 1919. We carried out a sensitivity analysis by linking with different similarity thresholds and found our findings were robust to these decisions.

ConclusionsWe have shown how a large and complex data collection can be successfully linked, resulting in new opportunities for various studies in the health and socialsciences.
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.