bluuebunny/crossref_metadata_2025_split huggingface dataset:
A New National STI and BBV Surveillance System for Aboriginal Community-Controlled Health Services
Authors: Ward James , Bradley Clare , Donovan Basil , Hengel Belinda , Elliott Salenna 
Published: December 2020

IntroductionAboriginal Community-Controlled Health Services (ACCHSs) routinely collect sexually transmissible infection (STI) and blood-borne virus (BBV) clinical data from individuals through electronic medical records (EMRs). At a population level these data are an underutilised resource and can be used to help drive clinical and public health interventions. Accordingly, we have established a national STI and BBV sentinel surveillance network for ACCHSs —the ATLAS network.
Objectives and ApproachIn establishing the ATLAS network, we standardised and automated extraction of deidentified clinical data from multiple EMRs using The University of Melbourne’s GRHANITE™ software. Regular reports are provided to each ACCHS, addressing 12 clinical indicators considered best practice in STI and BBV control and management. Data are used to drive Continuous Quality Improvement strategies, can be aggregated at regional and national levels, and have the ability to link to other surveillance networks also using GRHANITE™.
ResultsThe ATLAS network currently includes more than 30 ACCHSs, including urban, regional and remote areas. To date, data have been analysed for >50,000 individuals aged ≥15 years attending medical consultations at ACCHS between January 2016 and December 2018. For clients in the key age-range for STI testing of 15–29 years, the mean annual rate of chlamydia/gonorrhoea testing was 25% (range: 1–59%). The mean annual rate of chlamydia positivity for clients 15–29 years was 3% (range: 0–19%) and the mean annual rate of gonorrhoea positivity was 2% (range: 0–18%).
Conclusion / ImplicationsAn integrated network of STI and BBV testing and management data has been successfully established amongst ACCHSs nationally. The ATLAS network can be readily expanded and has the potential to link to other datasets using the GRHANITE™ tool. ATLAS provides a unique data infrastructure with capacity to support novel research programs as well as underpin quality improvement activities within participating sites.
Mental Disorders and Subsequent Suicide in A Representative Community Population
Authors: Adhikari Kamala , Metcalfe Amy , Bulloch Andrew GM , Williams Jeanne VA , Patten Scott B 
Published: December 2020

BackgroundExisting association between mental disorders and suicidality is mostly based on cross- sectional studies, using clinical samples.
Objective and methodsWe examined the patterns of association between mental disorders and subsequent suicide in a representative sample of the Canadian household population. This is a retrospective cohort study that used data from the Canadian Community Health Survey 2002 linked to the Death Database 2000-2011 and the Hospitalization Database 1999/2000-2012/2013) (N=27,000). Mental disorders (past-year major depressive episodes (MDE), bipolar disorders (BPD), anxiety disorders (AD), and substance-dependent (SD)) were diagnosed in the survey data using the Composite International Diagnostic Interview. Subsequent suicide events (deaths/hospitalizations for suicide attempts) were identified using ICD-10-CA codes. Time-to-event data were analyzed using competing-risk regression models, adjusting for age, sex, marital status, and educational attainment. Due to the violation of the proportional hazard assumption, the models were stratified into two strata. Sampling weights were used to ensure representation of the target population.
ResultsOf 27,000 respondents, mental disorders were diagnosed in 15.0% respondents and 0.4% had suicide events. Each mental disorder was significantly associated with an increased risk of suicide. The strength of association between mental disorder and suicide weakened over-time for MDE, SD, but not for BPD and AD. For example, using the time-to-event cut-off 4-year, the hazard ratio (HR) for MDE was 6.02 (95% CI=2.65,13.68) in the first 4-year, whereas, it was 2.03 (95% CI=0.91,4.53) after 4-year. The HRs of suicide for BPD were 16.95 (95% CI=6.88,41.75) and 15.81 (95% CI=5.89,42.45) before and after 4-year.
Conclusions/ImplicationsFindings reflect improvement of suicide-risk over-time for people with MDE and SA and the persisting risk for people with BPD and AD. Our findings underscore the importance of early management of mental disorders for effective suicide prevention, and requirement of longer-term follow-up for people with BPD and AD.
Overcoming the Impasse 2: Assessing the Quality of Recent Australian Applications of a Privacy-Preserving Record Linkage Method (PPRL-BLOOM)
Authors: Randall Sean , Brown Adrian , Ferrante Anna , Boyd James , Irvine Katie , Eitelhuber Tom , Wichmann Helen 
Published: December 2020

IntroductionWhile the quantity and type of datasets used by data linkage projects is growing, there remain some datasets that are ‘not available’ or ‘hard to access’ by researchers and linkers, either due to legal/regulatory constraints restricting the release of personally identifying information or because of privacy or reputational concerns. Advances in privacy-preserving record linkage methods (e.g. PPRL-Bloom) have made it possible to overcome this impasse. These techniques aim to provide strong privacy protection while still maintaining high linkage quality.
PPRL-Bloom methods are being used in practice. The Centre for Data Linkage (CDL) at Curtin University has been involved in several PPRL linkage and evaluation projects using real-world data. As the methods are relatively new, published information on achievable linkage quality in real-world scenarios is limited.
Objectives and ApproachWe present and describe several real-world applications of privacy preserving record linkage (PPRL-Bloom) where the quality of the linkage could be ascertained. In each case, data was linked ‘blind’; that is, without linkers having access to the original personal identifiers at any stage, or having any additional information about the records. Evaluations include a linkage of state-based morbidity and mortality records, a linkage of a number of general practice datasets to morbidity and emergency records, and a linkage of a range of state-based non-health administrative data, including education, police, housing, birth and child protection records.
ResultsThe privacy preserving record linkage performed admirably, with very high-quality results across all evaluations.
Conclusion / ImplicationsPrivacy preserving linkage is a useful and innovative methodology that is currently being used in real world projects. The results of these evaluation suggest it can be an appropriate linkage tool when legal or other constraints block release of personally identifying information to third party linkage units.
Longer duration on a Chronic Disease Management plan is associated with long-term adherence to antihypertensive and antithrombotic medications following stroke
Authors: Ung David , Kilkenny Monique F , Olaiya Muideen T , Kim Joosup , Phan Thanh , Cadilhac Dominique A , Ma Henry , Dewey Helen M , Nelson Mark R , Srikanth Velandai K , Bladin Christopher F , Fitzgerald Sharyn M , Thrift Amanda G 
Published: December 2020

Introduction and PurposeChronic Disease Management (CDM) plans are used by general practitioners to manage chronic diseases such as stroke. However, there is limited evidence that being on these plans improve adherence to secondary prevention medications after stroke. We aimed to assess the association of the duration on a CDM plan in improving adherence to secondary prevention medications following stroke.
MethodsAustralian survivors of stroke or transient ischaemic attack were participants from the STAND FIRM trial. Patients were individually linked with claims for CDM plans from Medicare and dispensings of secondary prevention medications from the Pharmaceutical Benefits Scheme. We estimated (1) duration on a CDM plan based on the timing and Medicare items claimed and (2) the proportion of days that patients would have been covered by these medications (PDC), while accounting for deaths and instances of over-supply. Dosage for each quantity of medication was determined by the regularity in which patients returned for a refill. Logistic regression was used to evaluate factors associated with ≥80% adherence, up to 3 years after stroke, for each of antihypertensive, antithrombotic and lipid-modifying drugs.
ResultsThe median PDC for 563 patients (median age 70yrs; 36% female) ranged from 92% to 95% among the three classes of medications. Approximately 27% did not take up a CDM plan, 33% were on plans for <1.5 years and 40% for 1.5-3 years. Duration on a CDM plan (quintiles) was associated with adherence for antihypertensive (Odds Ratio (OR) 1.18, 95% confidence interval (95%CI) 1.00-1.40, p=0.029) and antithrombotic medications (OR 1.22, 95%CI 1.03-1.46, p=0.024), but not for lipid-lowering medications.
ConclusionPeople on a CDM plan for longer had better adherence to antihypertensive and antithrombotic medications in the long-term after stroke. Use and ongoing reviews of CDM plans should be encouraged to improve adherence to secondary prevention medications after stroke.
Perceived vs. Verified Cancer Transmission Risk from Deceased Organ Donors in New South Wales (NSW), Australia, 2010-2015
Authors: Hedley James A , De La Mata Nicole , Rosales Brenda M , Waller Karen M J , Thomson Imogen K , Kelly Patrick J , O’Leary Michael , Cavazzoni Elena , Wyburn Kate , Webster Angela C 
Published: December 2020

IntroductionDonor suitability assessment is often time-sensitive, with imperfect information available at referral. Opportunities for donation may be missed if donors are rejected based on inaccurate information.
Objectives and ApproachWe sought to compare assessment of cancer transmission risk based on information available at referral (perceived) versus subsequently obtained (verified) detailed medical history, and to identify any missed opportunities for donation. We used data from the NSW Biovigilance Register, a cohort study of deceased organ donor referrals in New South Wales (NSW) 2010-2015. Referrals from NSW who had consent and were otherwise suitable for donation (except for perceived or verified tumour) were analysed. Perceived tumour details were obtained from NSW Organ and Tissue Donation Service referral logs, while verified details were based on the Central Cancer Registry and Admitted Patient Data Collection. Cancer transmission risk was graded using Transplantation Society of Australia and New Zealand guidelines.
ResultsAmong 772 referrals otherwise suitable for donation, 601 (78%) had accurately classified cancer transmission risk (κ=0.59). Overall, 53 suitable referrals were rejected due to cancer transmission risk (missed opportunities), including 49 (92%) with overestimated risk (perceived high, verified low/none), and 4 (8%) due to excessive risk aversion (perceived and verified low risk). Missed opportunities had overestimated transmission risk for tumours including leukaemia (8, 16%), lung (8, 16%), melanoma (7, 14%), brain (6, 12%), and breast (6, 12%).
Conclusion / ImplicationsDespite time pressure and limited information availability, there is moderate agreement between perceived and verified cancer transmission risk. Nevertheless, improved information availability (e.g. via data linkage) could meaningfully increase the number of actual donors.
Canadian Data Platform: Developing an Algorithm Inventory for Health and Social Measures
Authors: Lix Lisa M , Smith Mark , Wu Juliana , Al-Azazi Saeed , Dahl Lindsey , Poppel Allison , Lê Mê-Linh 
Published: December 2020

IntroductionThe SPOR (Strategy for Patient-Oriented Research) Canadian Data Platform aims to facilitate multi-jurisdictional research through a variety of activities, including the development of standardized algorithms for health conditions, health service use, and the determinants of health. An initial step towards standardization was to identify existing health measures that have been validated or assessed for feasibility of implementation in multi-jurisdictional research, document features of these measures, and describe the methods used to validate or assess feasibility.
Objectives and ApproachWe constructed an inventory of published algorithms to measure population health, health services use, and the determinants of health. A systematic review of published literature identified algorithms from validation or feasibility studies in two or more Canadian provinces/territories. The search strategy was applied to Medline, Embase, and Scopus. The Algorithms and Harmonized Data Working Group of the Canadian Data Platform identified relevant fields for data extraction, including study type, population characteristics, data source, jurisdictions, and algorithm details. A searchable online resource was created to maintain and share the algorithms.
ResultsOf the 2758 articles retrieved, 1998 articles underwent title and abstract review and 60 articles were selected for full review. A total of 8 validation and 26 feasibility studies were assessed; they contributed over 140 algorithms. Chronic physical health conditions, such as diabetes, depression, hypertension and dementia, were most often represented in the algorithms. British Columbia and Manitoba were the jurisdictions most frequently represented in the studies. Methods to facilitate automated searching of the on-line resource are under development.
Conclusion / ImplicationsOur inventory of algorithms provides valuable information for researchers interested in conducting multi-jurisdictional studies, and reveals gaps where further algorithm development could be undertaken. This comprehensive collection of existing algorithms will support future studies aimed at improving population health and monitoring health service use in Canada.
Involving the Public in Data Linkage Research
Authors: Aitken Mhairi , Braunack-Mayer Annette , Flack Felicity , McGrail Kimberlyn M , Burgess Michael , Paprica P. Alison 
Published: December 2020

Introduction“The Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research”, recent data breaches, and growing public awareness and controversy associated with secondary use of health data all highlight the need to understand what data sharing the public will support, under what circumstances, for what purposes and with whom.
Objectives and ApproachThis symposium explores methods and findings from public engagement at all stages of data linkage research, beginning with short presentations (~6-8 minutes) on recent work:

Mhairi Aitken: Consensus Statement - principles and an application using deliberative workshops to explore public expectations of public benefits from data-intensive health research
Annette Braunack-Mayer/Felicity Flack: Surveys and citizens’ juries: Sharing government data with private industry
Kim McGrail/Mike Burgess: Public deliberations on cross-sector data linkage, and combining public and private sources of data
Alison Paprica: Plain language communication informed by Health Data Research Network Canada’s Public Advisory Council.

Half the session will be spent interacting with the audience through live polling. The moderator will post a series of poll question such as “What is the most important thing for meaningful public engagement?” to prompt audience thinking on the topic. After the audience responses are revealed, panelists will share their own views about what they think is the best answer, and the main reason(s) behind their choice. The last 10-15 minutes of the session will be reserved for Q&A and dialogue with the audience.
ResultsWe anticipate that this approach will surface emerging and tacit knowledge from presenters and the audience, and augment that through generative discussion.
Conclusion / ImplicationsSession attendees will leave with a better understanding of the current state of knowledge and ways to talk about that understanding with other researchers, policy makers and the public.
Linking Armed Forces Leavers to 2011 Census
Authors: Cooper Lynda , Elliot Rose 
Published: December 2020

IntroductionThe aim of this project was to meet a user need for more data on those who have served, and now left, the UK armed forces (service leavers) to support commitments under the Armed Forces Covenant. We explored the feasibility of linking the Veteran Leavers Database (VLD) held by the Ministry of Defence (MoD) to 2011 Census data held by the Office for National Statistics (ONS), Northern Ireland Statistics and Research Agency (NISRA).
Objectives and ApproachThe Census for England, Wales and Northern Ireland consisted of a total number of 56 million records. The Ministry of Defence (MoD) provided the Veteran Leavers Database (VLD) which contained two million records of individuals who have left the armed forces since 1971.
Postcode information was not available for this linkage, therefore a bespoke set of matchkeys was created and clerical review was carried out to determine the best set of recommended matchkeys. The linkage was carried out within the secure linkage environment using pseudonymised data to protect the identities of individuals within these datasets.
Results53% of all VLD records linked to a Census record on one of the recommended matchkeys.
Further quality analysis was carried out on the linkage rates by different years of exit which showed that, after 1975, the rate of matched records improved the closer the VLD entry was to Census year.
Conclusion / ImplicationsONS have concluded that whilst there is value in the administrative datasets on service leavers, it only partially meets the user need. A census question has been developed and tested on service leavers and it has been concluded that such a question will work. ONS therefore now intending to recommend inclusion of this topic in the 2021 Census.
Data for Children Proof of Concept
Authors: Cooper Lynda , Elliot Rose 
Published: December 2020

IntroductionThe Data for Children Proof of Concept Build was developed as a collaborative project between the Children’s Commissioner’s Office, the Office for National Statistics (ONS) and the Administrative Data Research Partnership (ADRP) to address the challenge of identifying vulnerable children in England and Wales and related gaps in existing data available for research.
Objectives and ApproachThis project tested the feasibility of linking longitudinal data on pupils from the All Education Dataset for England (AEDE) to 2011 Census data to identify other household members and enable more accurate measurement of the household structures that shape children’s experiences.
A subset of 2.25 million individual pupils aged thirteen to eighteen from the AEDE for the 2010/11 academic year was used for the linkage because this year aligned to the Census date.
Using pseudonymised data, a series of matchkeys containing different combinations of name, date of birth, gender and postcode, was used to link the AEDE to the Census using the standard ADR linkage method.
ResultsFrom the subset of 2.25 million pupils identified in the 2010/11 data, just over two million (90%) linked to a Census record, two thirds of which matched on the strongest matchkey. Age distribution analysis showed there was consistency between the AEDE subset, the linked file and the AEDE records which did not link. Further analysis suggested that there was no issue with boarder status where records did not link.
Conclusion / ImplicationsThis research showed that a high proportion of records matched between these datasets, and the majority of matches were made on strong matchkeys, giving confidence that those matches are correct, such that the feasibility of the linkage has been demonstrated. It was recommended that this research should continue.
Novel Linkage of Administrative Health and Family Court Data to Examine Mental Health Need Among Women Whose Children Enter Care
Authors: Pearson Rachel J , Jewell Amelia , Wijlaars Linda , Gilbert Ruth 
Published: December 2020

IntroductionAn estimated 23% of children in England are exposed to maternal mental health problems, with growing concern around how maternal mental health affects parenting capacity and entries into public care for their children. There is limited evidence on the prevalence of mental health service need among women whose children enter care and on whether these needs are sufficiently met. With England’s family justice system and children’s social care sector increasingly overstretched, there is a need to identify opportunities for an improved response to maternal mental health.
Objectives and ApproachWe linked administrative family court data for women (n = 5463) involved in public family court proceedings (care proceedings) across eight London boroughs between 2007 and 2019, with patient records from South London and Maudsley NHS mental health trust (SLaM). Work is ongoing to (1) describe the frequency, type and timing of mental health service use among women who link and (2) compare these findings to general population trends.
Results2843 (52%) women linked to a SLaM patient record via deterministic linkage. Matches had better recording of identifiers and were more likely to have returned to court than non-matches (36% vs 26%). The majority of women (75.0%) were referred for treatment before the start of their (first) care proceeding, while 34.8% had a diagnosis recorded in a structured field. To appraise linkage quality, we manually reviewed de-identified clinician notes for 100 randomly selected women who linked; we confirmed ‘true’ match status for 95 women and found no evidence contradicting match status for the remainder.
Conclusion / ImplicationsThis novel linkage between mental health and family court data supports growing evidence that women whose children enter care in England have high prevalence of mental health problems. Research using this linkage will help to inform strategies to improve maternal mental health and outcomes for vulnerable women and their children.