bluuebunny/crossref_metadata_2025 huggingface dataset:
Changes in Aboriginal Patient Experiences of Care in NSW Public Hospitals From 2014 To 2018: The NSW Patient Survey Program
Authors: Tran Hoang Ngoc Bich
Published: December 2020

IntroductionNew South Wales is home to more Aboriginal people than any other state or territory in Australia. While much is known about social and health status among these Aboriginal people, less is known about their experience of healthcare.

Objectives and ApproachBHI produces independent reports and information about the performance of the NSW healthcare system. In collaboration with the NSW Ministry of Health Centre for Aboriginal Health, our report explored trends in Adult Admitted Patient Survey in public hospitals for a range of measures from 2014 to 2018 for Aboriginal and non-Aboriginal patients. Administrative survey data were used to establish a sample frame, send questionnaires to a random sample of patients within three months following discharge and assess representativeness of respondents. We used logistic regression models, adjusted for age, sex, education and language spoken at home, to estimate the change of experience over time for both populations.

ResultsThere were 122,626 patients who shared their experiences each year from 2014 to 2018, among them, 4% identified themselves as Aboriginal. Aboriginal respondents in the survey were similar in age, sex, country of birth and stay type to the administrative sampling data. In 2018, 70% of Aboriginal patients said they would “speak highly” of their experience compared to 79% of non-Aboriginal patients. Across 51 measures, experience of care improved significantly for 39 measures among non-Aboriginal patients, and four among Aboriginal patients (privacy, experience with nurse, communication with patients).

Conclusion / ImplicationsAboriginal patients have less positive experience of the hospital care in general and there has been little improvement in their experience in recent years. Identifying areas of less positive experiences where health professionals can play a role individually or in a team could minimise disparities in experience of care.
Using Reproducible Data Visualizations to Augment Decision-Making During Suppression of Small Counts
Authors: Koval Andriy , Smolina Kate , Leamon Anthony
Published: December 2020

IntroductionWhen reporting disease rates to the public, a health system must take precaution to protect released data from re-identification risks. While specific guidelines and methods vary across data systems and governances 1 , redaction of cells with small values is a key component in any approach for preparing data for public release. These preparations, when conducted manually, have proven to be arduous, time consuming, and prone to human error. Although finding a “small” value (e.g. “< 5 ” ) is straightforward, detecting conditions in which suppressed values could be recalculated from related cells involves human judgement.

Objectives and ApproachGuided by the real-world objective to reports the rates of chronic diseases in British Columbia, we aimed to design a reproducible workflow that would augment human decision-making and offer a nimble quality control tool, approachable by epidemiologists without technical background. Our workflow (1) splits data into disease-by-year data frames of a specific form, (2) applies a sequence of algorithms trained to recognize conditions that made recalculation of suppressed values possible and (3) prints a graph for each case of suggested automatic redaction to be confirmed by a human.

ResultsThe augmented suppression system was successfully integrated into the maintenance of Chronic Disease Dashboard, an online reporting tool of the Observatory for Population and Public Health designed to address the gap in surveillance of chronic diseases in British Columbia. Anticipating the evolution of suppression logic, we isolated the logical tests responsible for redaction and provided several options to vary the degree of preserved information.

Conclusion / ImplicationsInstead of employing a complex generalizable solution, we make a case for organizing the procedure for small cell redaction as a data visualization task, allowing for straightforward quality control of suppression decision and thus more approachable to a non-technical audience, as well as for employing such learning devices as workflow maps and function dependency trees for structuring applied projects and ensuring their reproducibility.
Pre-Hospital Factors Influencing the Provision of Acute Care for Patients with Stroke: Preliminary Findings from A State-Wide Data Linkage Study
Authors: Eliakundu Amminadab , Smith Karen , Kilkenny Monique , Kim Joosup , Bagot Kathleen , Andrew Emily , Bladin Christopher , Cadilhac Dominique
Published: December 2020

IntroductionImprovement in access to reperfusion therapy and reductions in treatment delays requires coordination of multiple systems and services including a well-organised and streamlined pre-hospital care system.

Objectives and ApproachOur objective is to examine pre-hospital and hospital factors that influence long-term outcomes in patients with stroke. We linked and merged patient-level data from the Australian Stroke Clinical Registry (AuSCR) to Ambulance Victoria (AV), hospital administrative datasets (Victorian Admitted Episodes Data; VAED) and emergency department data (Victorian Emergency Minimum Dataset; VEMD) using probabilistic, iterative methods. Logistic regression models were used to determine clinical factors associated with access to evidence-based treatments.

Results7,373 episodes in the AuSCR were available for linkage, of which 4,569 (62%) were matched with AV records (58% male, median age 72 years). Of these 4,569 matched records, 4,159 (58% male, median age 73 years) had a record in the VAED or VEMD. Stroke or transient ischaemic attack was suspected for 68% of patients by paramedics based on the AV data. Highest transport priority was used for 64% of patients. Patients suspected of stroke by paramedics were more likely to be treated in stroke unit (unadjusted odds ratio, 1.72; 1.47, 2.01) and more likely to receive thrombolysis if ischaemic stroke (unadjusted odd ratio: 4.64, 3.47, 6.20).

Conclusion/ImplicationsLinkage of these administrative data with the AuSCR provide the opportunity to interrogate a range of questions to inform policy and practice of acute stroke care. Future analyses will investigate patient (such as comorbidities), clinical and system factors that influence provision of evidence-based care for patients with stroke and whether these influence outcomes at 6 months after stroke.
The Developmental and Educational Impact of Hearing Impairment in Aboriginal Children Living in Remote Australia – A Data Linkage Study
Authors: Shawon, Md Shajedur Rahman
Published: December 2020

IntroductionHigh prevalence of otitis media (OM) and hearing impairment (HI) in Aboriginal children in Australia’s Northern Territory (NT) is well documented. HI may be associated with poorer outcomes in early childhood development, school attendance and academic achievement. However, these associations have not been investigated in this population.

Objectives and ApproachRetrospective cohort studies were conducted to investigate the association between HI and three education-related outcomes in Aboriginal children living in remote NT communities. The explanatory variable for all studies was audiometrically determined hearing levels. The outcome measures were Australian Early Development Census (AEDC) results, representing developmental outcomes at around age 5 years; Year 1 school attendance rates; and, National Assessment Program – Literacy and Numeracy (NAPLAN) results for Year 3 for academic achievement. Relevant confounding variables from available linked datasets were controlled for in the statistical analyses.

ResultsCompared with normal hearing children, after adjustment for selected confounding factors, children with HI had higher risk for being developmentally vulnerable in two or more of the five AEDC domains (adjusted odds ratio 1.69); lower AEDC domain score sum (-1.60~-2.40); scoring lower in Numeracy (by 15.2 points), Writing (by 13.4-15.6 points) and Spelling (by 5.0 points) domains of NAPLAN; and having lower attendance rates (attending 4.0-5.6 fewer days in Year 1). Severer HI categories generally yielded greater effect sizes. Notably, across the studies, some confounding variables included in the analysis yielded substantially greater effect sizes.

Conclusion / ImplicationsOM-related HI has a negative impact on early childhood development, Year 1 school attendance and academic achievement in Year 3 in Aboriginal children living in remote NT communities. To improve the developmental and educational outcomes it is important to detect HI at an early age and provide effective educational support, in addition to clinical and audiometric management.
Five Key Lessons for A Cross-Jurisdictional Data Linkage Project Win-Win
Authors: Jones Sarah
Published: December 2020

IntroductionThe Coordination of Health Care study was developed by the Australian Institute of Health and Welfare in partnership with the Australian Bureau of Statistics (ABS) to fill an important data gap relating to patient-reported experiences of continuity of care across Australia.

Objectives and approachThe 2016 Survey of Health Care was administered by the ABS. Over 35,000 responses were weighted to population benchmarks before being linked toadministrative datasets including hospital and emergency department care, Medicare Benefits Schedule and Pharmaceutical Benefits Scheme.

These linked datasets aim to provide a comprehensive picture of patient journeys in relation to patient-reported experiences of continuity of care.

The cross-jurisdictional data linkage spanned state and federal agencies, data linkage units and state health departments. Approvals across 10 different ethicscommittees were sought. Study management included governance and compliance with state and federal privacy legislation, negotiation of safe transfer of sensitive information across organisations, data interrogation, understanding data quality and study limitations.

Specific challenges included sensitivities in response to requested data variables, obtaining private hospital data, understanding state based legislation, particularly in changes to guardianship and consent, working across jurisdictions to meet requirements and communicating linkage protocol.

ResultsAll hospital linked datasets were received in early 2020 and currently being validated. Analysis of linked data will investigate continuity themes on low urgencycare and potentially preventable hospitalisations.

ConclusionFive key lessons learned from the cross-jurisdictional data linkage:

Engage with jurisdictional-based organisations early. Leveraging existing committees in the first instance can help.

Be specific in documentation and approach.

Subtly, every state is different. Local context and state legislation matter.

Governance ethics and compliance take time. Get started early.

Liaise broadly, across and between organisations.
Residential Mobility and Changes in Deprivation Levels For 0 – 4 Year Olds in New Zealand
Authors: Robertson Oliver , Nathan Kim , Howden-Chapman Philippa , Baker Michael , Carr Polly Atatoa , Pierse Nevil
Published: December 2020

IntroductionHigh residential mobility has been shown to have a negative impact on young children, with long-term consequences for their physical and mental health, and social outcomes. Understanding the broad trends in moves and differentiating between moves to neighbourhoods which are likely to have ‘positive’ or ‘negative’ consequences is an important question in the residential mobility literature, with important implications for public policy and children’s health.

Objectives and ApproachThe aims of this study are to describe the level and changes in neighbourhood deprivation that occur during residential moves involving children aged 0–4 years of age in New Zealand, and to assess whether these changes differ for children of different ethnicities.

Our cohort is 565,689 children born in New Zealand from 2004 to 2018. The dataset of residential moves is created using the full address notification table from the Integrated Data Infrastructure, a set of government data tables that have been linked and anonymised by Statistics New Zealand.

ResultsWhile there is a reasonable amount of mobility in terms of the deprivation of the area in which a child lives, the most likely outcome of a move is that it will be to an area with the same level of deprivation. This is especially true for the most and least deprived areas. Areas of high deprivation have the highest levels of churn and residential mobility. Māori and Pasifika children have lower levels of socioeconomic mobility and are more likely to move into and to stay in, areas of high deprivation.

Conclusion / ImplicationsChildren living in highly deprived areas are likely to stay in high deprivation areas. Children living in these areas also move more frequently than the general population. Māori and Pasifika children are overrepresented in high deprivation areas, and on average they move more frequently than the group of all children aged 0 – 4.
Building Research Capacity and Organizational Empathy Among Students: Making Connections Beyond the Data
Authors: Durksen Anita , Struck Shannon , Guemili Alexandra , Han Soomin , Brownell Emily , Mahar Alyson , Nickel Nathan , Fransoo Randy , Brownell Marni , Enns Jennifer , Turnbull Lorna
Published: December 2020

IntroductionThe leveraging of multi-sector, whole-population, linked administrative data is advantageous for conducting research on complex real-world problems. However, such large and complex data repositories can sometimes appear impersonal and overwhelming. Establishing organizational empathy (OE) in thecontext of a multi-sector partnership between academic, government and community representatives can help us understand the data better for social policy research. Evidence stemming from this research can then inform policy decisions, ultimately increasing the potency of linked data analysis and creating more meaningful student experiences. Our objective is to examine the role of OE in the student research experience.

Objectives and ApproachSPECTRUM (Social Policy Evaluation Collaborative Team Research at Universities in Manitoba) is a multi-disciplinary partnership working to provide evidence-based solutions to ‘wicked’ social issues by using linked data from multiple sectors. SPECTRUM provides fellowships to students to become partners in the collaboration. Students have participated in quarterly workshops, building relationships with community leaders, government decision-makers and academic researchers. Students are from various faculties, bringing their unique frameworks and research interests to the collective. Through OE, students observeand participate in SPECTRUM, relating its goals and outcomes to society and their own research.

ResultsStudent inclusion in SPECTRUM enhances the partnership by providing a greater range of perspectives and facilitates the development of OE among SPECTRUM members. Students are using linked administrative data, while actively engaging in dialogue with stakeholders, thereby enriching their knowledge and understanding of research.

Conclusion / ImplicationsData linkage involves more than just use of the repository; it requires establishing common ground since the data have different meaning to each partner. OE developed through SPECTRUM provides invaluable insight into and context for the data. Knowledge transfer among members of the partnership will enrich SPECTRUM’s research outcomes while building capacity among Students.
Healthcare Use for Violent Injury After Intimate Partner Violence Identified Through the Justice System: A Data Linkage Study
Authors: Urquia Marcelo L , Nesca Marcelo , Walld Randy , Au Wendy , Turnbull Lorna , Brownell Marni , Brownridge Douglas
Published: December 2020

IntroductionRoutine health care information systems only capture a portion of violence against women because some victimized women may not seek health care and some events may not require medical attention. Population-based estimates of the risk of violent injury (VI) among women with a history of intimate partner victimization (IPV) are lacking.

Objectives and ApproachTo determine the risk of violent injury following IPV among women living in Manitoba, Canada, 2004-2016. Linked administrative justice, healthcare, and social databases were used. Exposure began after a woman was first involved with the Manitoba Justice system as a victim of IPV, assessed through provincial prosecution and disposition records. IPV victims (n= 20,469) were matched to three non-victims (n= 61,407) on age, relationship status and place of residence at the date of the IPV incident. The main outcomes were first health care use for violent injury and violent death. Outcomes were assessed through emergency department, hospital and vital statistics records. Conditional Cox Regression was used to obtain Hazard Ratios with 95% confidence intervals (CI).

ResultsThe crude risk of VI was 8.5 per 1000 women among non-victims and 55.8 among victims of IPV. Compared to non-victims, IPV victims were 3.8 [95% confidence interval (CI): 3.4, 4.3] times more likely to suffer IIIO and 4.5 [95% CI: 2.3, 9.0] times to have a violent death, after adjustment. Victims had approximately half the risk of VI if the accused is on probation.

Conclusion / ImplicationsJustice System-identified victims of IPV are at higher risk of assault and violent death than women not exposed to IPV. Justice involvement represents an opportunity for prevention of violent injury and homicide among IPV victims.
A National Approach to The Management of Multi-Jurisdictional Linked Data Projects in Australia
Authors: Wray Natalie , Flack Felicity , Irvine Katie
Published: December 2020

IntroductionThe Population Health Research Network (PHRN) is an Australian data linkage infrastructure capable of securely and safely linking and integrating data collections from a wide range of sources. Australia, as a federated nation, has taken a national approach because:

Australia’s population is mobile and there is significant cross border service use

Commonwealth, state and territory government agencies collect and store their own data.

The national data linkage infrastructure enables researchers to apply for access to routinely collected and linked administrative data from the Commonwealth, six states and two territories. The application and approvals has been described by researchers as a time-consuming and administratively burdensome process.

Objectives and ApproachThe primary objective of this project was to improve coordination of the application and approval processes for researchers requesting linked data from multiple jurisdictions in Australia. The approach taken was to develop a single application form/online application system (OAS) and standardise the business processes for multi-jurisdictional research applications.

ResultsThe PHRN OAS was launched in 2014. All jurisdictions agreed to use the system for multi-jurisdictional linked data projects and SA NT DataLink agreed to use the system for their single-jurisdictional projects.

Each year since the PHRN OAS’s launch, both the total number of registered users and the number of submissions each year has increased. The majority oforganisations that lodge submissions are universities and medical research institutes.

There has been a significant reduction in the time taken by data linkage units to issue quotes and the time taken to achieve all approvals for multi-jurisdictional projects since the introduction of the standardised business processes.

Conclusion / ImplicationsThis paper demonstrates that despite the challenges and complexities associated with applying for linked data from multiple jurisdictions a coordinated application and approval approach can be achieved.
Improving Inter-Agency Data Sharing Through Linkage Spine Interoperability
Authors: Von Sanden Nick
Published: December 2020

IntroductionLinkage of Federal Government data in Australia is conducted primarily through Accredited Integrating Authorities (AIAs). These agencies hold different dataset from Commonwealth and state/territory government agencies. Historically, linkage projects involving data held by different AIAs has been inefficient, requiring the transfer of identifiable data between agencies, and relinking data that have already been linked by another agency.

Objectives and ApproachTwo AIAs (the AIHW and ABS) have developed a system of interoperable linkage spines to address this issue. By using common datasets as a base, the agencies have improved the efficiency and security of linkage projects.

This process was developed through an analysis of spine datasets, and two test projects to share data between the agencies.

ResultsThe two test projects were successfully able to link cross-portfolio and cross-jurisdictional data without the need to share additional identifying information between the AIAs. Preliminary results suggest a high linkage rate from this process, and work is underway to quantify the linkage quality compared to traditional linkage methodologies. The ABS and AIHW are also investigating the implications for linkage quality as more datasets are included in the agencies’ linkage spines.

Conclusion / ImplicationsThe success of this project will increase the efficiency of cross-jurisdictional and cross-portfolio linkage in Australia. It will also allow specialised AIAs to work on datasets where they have specific expertise, and feed these into broader projects. This is expected to have an additional impact on public trust in the linkage system, by minimising the sharing of personally identifiable information while still maintaining high quality linkage.
Supporting Drug Regulators Through Simple Rapid Cycle Analyses
Authors: Camacho Ximena , Wilson Margaret , Paterson Michael , Pearson Sallie , Henry David
Published: December 2020

IntroductionDrug regulators require timely, relevant information to address questions about the safety of prescribed medicines. Some questions can be informed by initial rapid and simple analyses of linked exposure/outcome data. These analyses will establish how many individuals have received the drug, their characteristics, the availability of follow up time and the frequency of the event of interest in the exposed cohort. This approach does not enable causal inferences but establishes the need for, and feasibility of, more complex controlled analyses. Discovery that the exposure or outcome are uncommon can allay initial fears about the extent of a problem.

Objectives and ApproachA pilot network to support the Australian drug regulator (TGA, Department of Health) was established among three research institutions in Australia and Canada. Initial queries were identified and prioritised by staff at the TGA. Academic staff at the partner institutions performed a rapid feasibility assessment based on existing knowledge and expertise. Following this, initial exposure/outcome analyses were undertaken on selected queries using routinely collected data from Canada and Australia. Updates were provided to the TGA at each stage to ensure that decision-makers were fully informed and participated in decision making.

ResultsTo date, the network has assessed 20 queries. Seven were deemed infeasible and 4 queries were being addressed by studies that were already planned or underway; in these cases, arrangements were made to provide early results directly to the regulator. The final four queries progressed to an initial exposure/outcome analysis, and one such study was expanded to a fully adjusted controlled analysis.

Conclusion / ImplicationsThis framework has proven to be agile and responsive and has strengthened the relationship between academia and the TGA. It may serve as a model for others who wish to engage more closely with governments or other decision makers.
Pre-Existing Mental Disorder, Clinical Profile, Inpatient Services, And Costs in People Hospitalised Following Traumatic Spinal Injury: A Population Record-Linkage Study
Authors: Sharwood Lisa Nicole , Wiseman Taneal , Tseris Emma , Curtis Kate , Vaikuntam Bharat , Craig Ashley , Young Jesse T
Published: December 2020

IntroductionRisk of traumatic injury is increased in individuals with mental illness, substance use disorder and dual diagnosis (mental disorders); these conditions will pre-exist among individuals hospitalised with acute traumatic spinal injury (TSI). Although early intervention can improve outcomes for people who experience mental disorders or TSI, the incidence, management, and cost of this often complex comorbid health profile is not sufficiently understood.

Objectives and ApproachIn a whole-population cohort of patients hospitalised with acute TSI, we aimed to describe the prevalence of pre-existing mental disorders, and compare differences in injury epidemiology, costs and inpatient allied health service access.

Record-linkage study of all hospitalised cases of TSI between June 2013 and June 2016 in New South Wales, Australia. TSI was defined by specific ICD-10-AM codes. Mental disorder status was considered as pre-existing where specific ICD-10-AM codes were recorded in incident admissions.

Results13,489 individuals sustained acute TSI during this study. 13.11%, 6.06%, and 1.82% had pre-existing mental illness, substance use disorder, and dual diagnosis, respectively. Individuals with mental disorder were older (p<0.001), more likely to have had a fall or self-harmed (p<0.001), experienced almost twice the length of stay and inpatient complications, and increased injury severity compared to individuals without mental disorder (p<0.001).

Conclusion / ImplicationsIndividuals hospitalised for TSI with pre-existing mental disorder have greater likelihood of increased injury severity and more complex, costly acute care admissions compared to individuals without mental disorder. Care pathway optimisation including prevention of hospital acquired complications for people with pre-existing mental disorders hospitalised for TSI is warranted.
Using Newly Linked Data to Assess Equity of Out-Of-Pocket Healthcare Costs in Australia
Authors: Law Hsei Di , Biddle Nicholas , Lancsar Emily , Welsh Jennifer , Butler Danielle , Korda Rosemary J
Published: December 2020

IntroductionDescribing out-of-pocket (OOP) healthcare costs in relation to ability to pay requires multiple linked data sources not previously available. Current estimates of the progressivity of OOP healthcare costs in Australia are based on self-report surveys. Using newly linked Census to administrative income and medical claims data, we aimed to quantify, for the first time, the progressivity of OOP costs for government-subsidised out-of-hospital healthcare in Australia.
Objectives and ApproachWe used Australian Census 2011 linked to Personal Income Tax (PIT), Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) data compiled through the Multi-Agency Data Integration Project (MADIP). Personal disposable income was estimated using a combination of PIT data and Census self-reported income, and aggregated across the household to estimate equivalised household income. We estimated annual MBS (out-of-hospital only) and PBS OOP costs as a proportion of equivalised household income, and assessed progressivity by reporting this for each income decile and computing a Kakwani Index.
ResultsWe will present findings on progressivity overall, and separately by age, sex and location (incomplete at time of abstract submission).
Conclusion / ImplicationsOur study will present one measure regarding the equity of healthcare costs, and help to identify vulnerable or at-risk groups. These findings may inform policy changes on equity in the financing of healthcare. Newly linked data from the MADIP can be used to relate healthcare costs to ability to pay.
Early Life Predictors of Suspensions from Primary School: Cross-Agency Indicators of Risk for School Exclusion in An NSW Population Cohort
Authors: Laurens Kristin
Published: December 2020

IntroductionExcluding students from school via out-of-school suspensions and expulsions is a controversial practice in Australia and internationally, yet forms a key component of school welfare and discipline policies. There is growing concern that increasing exclusion at earlier grades and an over-representation of particular groups of disadvantaged students may intensify inequalities in educational, justice, health and welfare outcomes for excluded students relative to their non-excluded peers. Previous studies have focused predominantly on secondary school exclusions and on sociodemographic predictors.

Objectives and ApproachThis study aimed to identify early life predictors of primary school suspensions using multi-agency data from the New South Wales (NSW) Child Development Study. Participants were 34,855 NSW children and their parents with linked records from education, health, child protection, and criminal justice spanning birth to the 6 th - grade (~12 years). Multinormal logistic regression examined the associations of sociodemographic, pre/perinatal, early developmental vulnerability, and parent factors with any later suspension during the 3 rd - to 6 th -grades.

ResultsIn a multivariable model, many factors had significant independent associations with any suspension. The largest effects (odds ratios ≥4.0) were observed for male gender and child maltreatment reports, with moderate effects (odds ratios 1.5 to <4.0) for Indigenous ethnicity, socio-economic disadvantage, exposure to smoking in utero, any parental criminal offending, aggressive behaviour, school-based responsibility and respect, and sub-threshold notifications to child protection services. Small effects (odds ratios >1.0 to <1.5) were revealed for young maternal age at birth (<26 years), any parental mental illness, language and cognitive skills, any emotional or behavioural problem, hyperactivity-inattention, and any emergency department presentation for physical injury.

Conclusion / ImplicationsBy facilitating the identification of students at risk of early (primary school) exclusion using multi-sector information available at the time of entry to school, these findings may assist educators to deliver targeted preventative interventions for at-risk students
Symposium: Distributed Networks of Federated Secure Research Data Environments – Enabling Analytics Across Multiple Platforms
Authors: Schneider Matthias
Published: December 2020

IntroductionUsers of linked data require access to an increasing number of heterogeneous datasets from diverse domains, often held in different secure research data environments, especially for multi-jurisdictional projects. Under the traditional model of data access, projects are required to transfer and harmonise the necessary datasets in one central location before analysis can be undertaken, increasing the time required for data acquisition and preparation.

Objectives and ApproachIn a federated data environment, analysts query distributed datasets held in a network of multiple secure data environments via a central virtual database, without requiring the data to move. Instead, the data is analysed as close as possible to its storage location, minimising the amount of data transfers and giving data custodians more control over their data.

This symposium explores the challenges and opportunities of establishing and operating a distributed network of federated secure research data environments. Leading organisations operating data platforms in various jurisdictions present for 15 minutes each the current capabilities of their platforms, the landscape of data environments in their jurisdictions and potential approaches to key questions such as:

Harmonising/federating data sources

Data security

Data governance

Discoverability/metadata

Performance

The audience is the then invited to participate in discussing the topic for the remaining 30 minutes.

The following individuals have been approached to represent their organisations in this symposium:

Professor David Ford, Swansea University: UK Secure eResearch Platform (UK SErP)

Charles Victor, Institute for Clinical Evaluative Sciences (ICES): ICES Data & Analytic Virtual Environment (IDAVE)

Professor Louisa Jorm, Centre for Big Data Research in Health, University of New South Wales: E-Research Institutional Cloud Architecture (ERICA)

Professor Kimberlyn McGrail, Population Data BC: Secure Research Environment (SRE)

Results / Conclusion / ImplicationsThis symposium will help formulate requirements for and barriers to distributed networks of federated secure research data environments, and create a foundation for data analytics across multiple platforms.
Profile and Trends in Comorbidity for Patients Undergoing Hip and Knee Arthroplasty Using the Rx-Risk Measure with Pharmaceutical Dispensing Records
Authors: Kerr Mhairi , Graves Stephen E , Pratt Nicole , Inacio Maria , Duszynski Katherine , Gulyani Aarti , De Steiger Richard , Harris Ian , Ackerman Ilana , Jorm Louisa , Lorimer Michelle
Published: December 2020

IntroductionPatient comobidity at time of primary joint replacement (JR) impacts on outcomes including revision and mortality. Understanding changes in comorbidity profiles is important when assessing change in outcomes over time. Most arthroplasty registries have limited comorbidity information due to their minimum dataset. One approach to obtaining additional comorbidity data is linking registry data with national administrative data.
Objectives and ApproachObjectives were to quantify pre-operative comorbidity profile of patients undergoing primary total hip replacement (THR) and total knee replacement (TKR) for osteoarthritis. Also, to examine temporal trends in individual comorbidities for THR and TKR patients.
National pharmaceutical dispensing data were linked with THR and TKR arthroplasty patients. Medication dispensing histories in 12-months preceding JR (2003-2017) for 237,333 THR and 394,965 TKR patients, were mapped to 47 comorbidity classes using the Rx-Risk-V measure - a pharmacy-based measure of comorbidity. Comorbidity scores were calculated by summing comorbidity categories for individual patients. Trends in comorbidity scores/categories were described, with comorbidity information presented by PBS beneficiary category (concessional/general), stratified by age (<65/≥65 years).
ResultsMedian (interquartile range) comorbidity scores were higher in concessional patients ≥65y, THR:5(3-6), TKR:5(3-7); <65y,TKR:5(3-6) but not THR:4(2-6). Comparative scores for general patients (both ages) were THR:4(2-6) and TKR:3(2-5). Trends in median comorbidity scores were consistent across study period, THR:4- 5(concessional)/2-3(general) and TKR:4-5(concessional)/4(general). Commonly identified comorbidities in younger concessional THR patients were pain, measured by opioid use (62.4%), inflammation/pain, measured by use of non-steroidal anti-inflammatories (62.2%), GORD (36.2%) and hypertension (36.1%). Individual comorbidities remained generally stable over time. However, increased patient proportions were seen in THR concessionals <65y for opioid pain (59.1%-71.1%), depression (24.5-42.5%), whilst inflammation/pain (82.1-56.1%) and antiplatelet use (≥65y:23.5-9.2%) declined.
Conclusion / Implicationsn THR or TKR patients no appreciable change in comorbidity score or comorbidity profile occurred over time. This suggests that improving JR outcomes over time are unlikely due solely to variation in patient comorbidity profiles.
Self-Reported Well-Being Indicators and Case Identification of Common Mental Health Disorders in Routinely Collected Health Data
Authors: Thompson Daniel , John Ann , Fry Richard , Watkins Alan
Published: December 2020

IntroductionCommon mental health disorders (CMD) are significant contributors to impaired health and well-being, and drive greater health resource utilisation. Electronic health records (EHR) are increasingly used for case identification of CMD when ascertaining social determinants of mental health. We seek to compare self-reported well-being indicators in groups identified using EHR-based CMD methods.

Objectives and ApproachThe National Survey for Wales (NSW) contains self-reported well-being indicators (Warwick Edinburgh Mental Well-being Scale, WEMWBS) recorded annually on ~7,000 individuals. We combined data from two NSWs and linked well-being indicators with Welsh Longitudinal General Practice (WLGP) data within the Secure Anonymised Information Linkage (SAIL) Databank, using individual response dates. We then used WGLP data to algorithmically derive identifiers of CMD cases within survey respondents. This individual-level linkage enables a comparison of NSW responses in CMD and non-CMD cases, and to assess sensitivity and specificity of the current CMD algorithm.

ResultsSurvey participants comprised 18,450 adults aged 16+ and living in Wales during 16/17 or 18/19. WEMWBS responses indicate 2,338 (12.6%) participants could be considered possibly depressed, and 2,268 (12.3%) probably depressed with low mental well-being (LMW). For participants with LMW, a 42/58 percentage split is observed between male/female respondents, compared to a 45/55 respective split of those not identified with LMW. Participants with LMW recorded low measures for overall satisfaction with life, 998 (44%) reported a value of 5 or less (/10) compared to 1123 (7%) participants not identified with LMW. Similarly, 828 (37%) participants identified with LMW reported 5 or less (/10) on the life worthwhile index, compared to 800 (5%) of non-LMW participants.

Conclusion / ImplicationsLinkage to the NSW provides a rich data source to compare objective well-being to algorithmically derived CMD cases from routinely collected primary care data. The individual-level linkage involved will allow for the wider determinants of mental health disorders to be examined.
Markup: A Web-Based Clinical Annotation Tool with Enhanced Ontology Mapping
Authors: Dobbie Samuel , Strafford Huw , Pickrell W Owen , Fonferko-Shadrach Beata , Akbari Ashley , Thompson Simon , Lacey Arron
Published: December 2020

IntroductionUnstructured free-text clinical notes often contain valuable information relating to patient symptoms, prescriptions and diagnoses. These can assist with better care for patients and novel healthcare research if transformed into accessible, structured clinical text. In particular, Natural Language Processing (NLP) algorithms can produce such structured outputs, but require gold standard data to train and validate their accuracy. While existing tools such as Brat and Webanno provide interfaces to manually annotate text, there is a lack of capability to efficiently annotate complex clinical information.

Objectives and ApproachWe present Markup, an open-source, web-based annotation tool developed for use within clinical contexts by domain experts to produce gold standard annotations for NLP development. Markup incorporates NLP and Active Learning technologies to enable rapid and accurate annotation of unstructured documents. Markup supports custom user configurations, automated annotation suggestions, and automated mapping to existing clinical ontologies such as the Unified Medical Language System (UMLS), the Systematized Nomenclature of Medicine - Clinical Terms (SNOMED-CT), or custom, user-defined ontologies.

ResultsMarkup has been tested on Epilepsy clinic letters, where captured annotations were used to build and test NLP applications. Markup allowed for inter-annotator statistics to be calculated in the case of multiple annotators. Re-annotation, following iterations of annotation definitions, was incorporated for flexibility. UMLS codes, certainty context, and multiple components from complex phrases were all able to be captured and exported in a structured format.

Conclusions / ImplicationsMarkup allows gold standard annotations to be collected efficiently across unstructured text and is optimized to capture health-specific information. These annotations are important to develop and validate NLP algorithms that automate the capture of important information from clinic letters at scale.
Changing Propensity to Die at Home for People with Cancer in Scotland 2001-2011: Evidence from A Data Linkage Study
Authors: Atherton Iain , Schneider Anna , Henderson David
Published: December 2020

IntroductionThe proportion of deaths at home amongst cancer patients has increased internationally in recent years. This trend has become evident in Scotland. Underlying reasons are unclear and may include changing hospital policy decisions and changing social and demographic composition of the population.

Objectives and ApproachTo assess the drivers behind increased odds of dying at home amongst people who died of cancer in Scotland between 2001 and 2011. Data from the 2001 and 2011 censuses for everyone who was living at home at enumeration to death registration data for all deaths occurring in the 12 months following census. A dataset was created of everyone whose death was indicated to be from cancer. Bivariate and multivariate analysis was test hypotheses that (1) hospital discharge, and (2) that changes in socio-economic characteristics might explain the change.

ResultsThere were 12,640 deaths from cancer in the 12 months following the 2001 census, 13,167 following the 2011 census. Odds of dying at home were greater during the later period (OR 1.13). There was no evidence to suggest discharge from hospital in the days before death explained this change. Bivariate analysis demonstrated increased odds of dying at home associated with younger age, being a home owner, being married, and living with others. However, introducing these variables to logistic regression models made little difference to the changing odds of dying at home between the two census periods.

Conclusion / ImplicationsThe lack of impact on the odds of dying at home in Scotland between the two census periods suggests either policy or improved palliative care to be behind the shift. However, the findings with regard to drivers behind place of death suggests future projections should factor in changing social and demographic composition of the population in later life to anticipate future trends in place of death.
Comparação da posição do incisivo inferior na sínfise em jovens brasileiros leucodermas, xantodermas e nipobrasileiros com oclusão normal
Authors: Guerra Jose , Seminario Maria P. , Vigorito Julio , de Freitas Marcos Roberto , Janson Guilherme , Pinzan Arnaldo
Published: December 2020

Objective: To compare the linear and angular measurements using as a parameter the Vigorito analysis in Leucoderm, Xanthoderm, and Japanese-Brazilian people to obtain the average normal values, to compare the values obtained and the differences between groups and sex dimorphism. Material and Methods: The retrospective sample included 103 lateral films of young Brazilian people with normal occlusion. It was divided into three groups: Group I with 38 Leucoderm subjects, Group II with 33 Xanthoderm subjects, and Group III with 32 Japanese-Brazilian subjects. Lateral films were scanned using Scan Maker i800 scanner, and CephX 4.5.4. was used to measure the cephalometric variables specific to the analysis, and they were statistically compared. Age compatibility was analyzed using ANOVA test followed by Tukey test. Sexual dimorphism was evaluated with independent t test, and the intergroup comparisons were performed with ANCOVA followed by Tukey test. Results: Leucoderm and Japanese-Brazilian female group presented statistically significant differences for sexual dimorphism, showing a higher facial convexity and lower mandibular incisor less protruded. Besides that, Japanese-Brazilian subjects presented a significantly lower maxillary protrusion when compared to Xanthoderm and Leucoderm subjects. The latter group also had lower incisor protrusion when compared to Japanese-Brazilian and Xanthoderm, respectively. Conclusions: Leucoderm, Xanthoderm, and Japanese-Brazilian subjects with normal occlusion presented dentoskeletal, dental and facial differences, and gender differences related to the mandibular symphysis. Thus, the individualization of cephalometric patterns in different groups is justified.
Utilização clínica da trava alternativa do PowerScope – descrição passo a passo
Authors: Moro Alexandre , Morais Nathaly D. , Gomes Denisi Coelho , Chaves Junior Cauby Maia , Nolasco Gisele Maria Correr
Published: December 2020

Since its introduction in 2014, the PowerScope device has undergone some modifications to improve and facilitate its clinical use. This article describes the latest innovation in the device, which consists of an alternative attachment nut. With this new nut, the concept changes a little because we are going to install the nut outside the patient’s mouth and not directly in his mouth as we did with the first two generations of the nut. The alternative attachment nut is another option for using the PowerScope. It is up to the orthodontist to decide which option best fits his way of working: continue with nut 2 (from 2015); use the alternative nut on the upper and lower arches; Use alternate nut on the upper arch and nut 2 on the lower arch.
O propulsor mandibular pode ser usado com incisivos inferiores vestibularizados?
Authors: Tavares Stenyo Wanderley , Oliveira Marjorie Barbosa de Almeida
Published: December 2020

An excellent alternative to Class II treatment are fixed mandibular propulsion appliances. In general, they are devices that do not cause significant changes in the maxilla or mandible because they promote Class II correction primarily by dental alterations through an increase in the lower incisors inclination, decrease of upper incisors inclination, and occlusal plane rotation. The question is if it is possible to use this type of device, even with the lower dental compensation already present, that is, with the lower incisors vestibularized. The objective of this study is to show through a clinical case the use of mandibular propulsion with this type of malocclusion.
Eficácia polissonográfica de um aparelho intraoral semiflexível em pacientes apneicos resistentes ao CPAP – estudo preliminar
Authors: Quintela Marcelo de Melo , Boaro Leticia Cristina Cidreira , Brandt William Cunha , Tanaka Márcia Hiromi , Torres Caio Vinicius Gonçalvez Roman , Sendyk Wilson Roberto
Published: December 2020

INTRODUCTION: Intraoral appliances (IOA) are indicated for treatment of Obstructive Sleep Apnea Syndrome (OSAS) even in patients with poor adherence to CPAP. Polysomnography with IOA may confirm therapeutic benefit. METHODS: Polysomnographic results of a semiflexible IOA in patients under inadequate use of CPAP were compared by a retrospective pilot study including 17 patients (11 men and 6 women) aged 53.7 +- 7.8 years, BMI of 27.05 +- 4.1kg/m2 and basal apnea-hypopnea index (AHI) of 35.0 +- 19.8/h. Confirmed the inappropriate use or refusal of CPAP, the patients received a semiflexible propulsion device (AQUALITY) and, after complete titration, new polysomnographies were compared to baseline and CPAP registers. ANOVA was used for repeated and post-hoc Bonferroni measurements (p <0.05). RESULTS: There was a similar reduction in AHI with OA (7.7 +- 1.7/h) and CPAP (6.1 +- 1.6/h), both compared to baseline (p <0.001). The O2 desaturation index was reduced with IOA (2.4 +- 0.6 h) and CPAP (1.3 +- 0.6/h), both compared to baseline (15.7 +- 3.8) (p <0.001). Awakening rates were also minimized with IOA (7.2 +- 1.9/h) and CPAP (4.2 +- 0.7/h), both compared to baseline (18.9 +- 5.3) (p <0.001). Sleep efficiency was higher with IOA compared to CPAP (87,2 +- 2,1 x 75,6 +- 3,9) (p <0.05). CONCLUSION: Treatment with the selected device resulted in improved polysomnographic records in this sample and may be indicated as an alternative to CPAP in undertreated patients.