bluuebunny/crossref_metadata_2025 huggingface dataset:
Development and Initial Validation of a Harmonised Multi-Jurisdiction Work Injury Compensation Database
Authors: Collie Alex , Di Donato Michael , Beck Dianne , Sheehan Luke R
Published: December 2020

IntroductionNearly one quarter of a million Australian workers experience a work injury annually and make a benefit claim through one of the nation’s eleven workers’ compensation (WC) systems. The total cost to Australian society has most recently been estimated at $61.8 billion or 4.1% of GDP. The disaggregation of legislative responsibility between jurisdictions has contributed to a lack of common data standards, and thus minimal understanding of the efficiency or effectiveness of service provision in the Australian WC sector.

Objectives and ApproachThis project developed a new multi-jurisdictional work disability database including detailed information on work disability duration, health and social care service provision. Service level payment data contained in structured WC insurance claims datasets held by five large WC jurisdictions with >60% coverage of the Australian labour force was collected for all cases of work-related low back pain, fractures and limb soft tissue disease over between 2010 and 2015. Database development involved creation and coding of harmonised service-level indicators for individual episodes of healthcare provision and weekly periods of wage replacement.

ResultsA total of 253,000 cases and 10.7 million service episodes are included in the database. Initial exploratory analyses focused on the frequency, prevalence, timing, intensity and continuity of General Practitioner (GP) services to each of the injury groups. Regression modelling examined occupational, injury, demographic and jurisdictional factors affecting GP service use outcomes. As anticipated, service patterns varied by injury type, age, gender and occupational group. Significant differences in service use between WC jurisdictions were observed.

Conclusion / ImplicationsThis exploratory study demonstrates the feasibility of developing a population-based service level database for monitoring health service delivery to injured Australian workers. Future studies will examine the impact of jurisdictional policy differences on service delivery, and the relationship between service delivery and outcomes such as disability duration.
Evaluating Binary Encoding Techniques in The Presence of Missing Values in Privacy-Preserving Record Linkage
Authors: Ranbaduge Thilina , Christen Peter
Published: December 2020

IntroductionApplications in domains ranging from healthcare to national security increasingly require records about individuals in sensitive databases to be linked in privacy-preserving ways. Missing values make the linkage process challenging because they can affect the encoding of attribute values. No study has systematically investigated how missing values affect the outcomes of different encoding techniques used in privacy-preserving linkage applications.

Objectives and ApproachBinary encodings, such as Bloom filters, are popular for linking sensitive databases. They are now employed in real-world linkage applications. However, existing encoding techniques assume the quasi-identifying attributes used for encoding to be complete. Missing values can lead to incomplete encodings which can result in decreased or increased similarities and therefore to false non-matches or false matches. In this study we empirically evaluate three binary encoding techniques using real voter databases, where pairs of records that correspond to the same voter (with name or address changes) resulted in files of 100,000 and 500,000 records containing from 0% to 50% missing values.

ResultsWe encoded between two and four of the attributes first and last name, street, and city into three record-level binary encodings: Cryptographic long-term key (CLK) [Schnell et al. 2009], record-level Bloom filter (RBF) [Durham et al. 2014], and tabulation Min-hashing (TBH) [Smith 2017]. Experiments showed a 10% to 25% drop on average in both precision and recall for all encoding techniques when missing values are increasing. CLK resulted in the highest decrease in precision, while TBH resulted in the highest decrease in recall compared to the other encoding techniques.

ConclusionBinary encodings such as Bloom filters are now used in practical applications for linking sensitive databases. Our evaluation shows that such encoding techniques can result in lower linkage quality if there are missing values in quasi-identifying attributes. This highlights the need for novel encoding techniques that can overcome the challenge of missing values.
Trend and Factors Associated with Repeat Computed Tomography Examinations in Tertiary Hospitals: Linked Health Administrative Data in Western Australia
Authors: Ha Ninh
Published: December 2020

IntroductionComputed tomography (CT) has become an essential part of clinical practice. However, repeat CT scans has raised a concern about unnecessary exposure to ionising radiation and waste of health care resource. While substantial effort is underway to reduce inappropriate use of diagnostic imaging tests including CT, little evidence of any change in repeat CT use and its associated factors.
Objectives and ApproachThis study aimed to measure trend in repeat CT use and identify factors associated with repeat CT use in tertiary hospitals in Western Australia (WA).
This study used WA linked administrative records from hospital morbidity, emergency department presentations, and picture archiving and communication system datasets to capture all tertiary hospitalisations and number of CT use during the admission from 2003 to 2015. Multivariate logistic regression was used to examine trend and determine characteristics associated with repeat CT, for admissions with and without major surgery during hospitalisation.
ResultsAmong 303,439 admissions with CT scan 11.9% had repeat CT scan in the same anatomic areas. While the probability of repeat CT among admission with surgery remained unchanged over the study period, its counterpart significantly reduced about 4% per year. Regardless of surgical status, repeat CT scanning was significantly lower among females, Indigenous and older age groups but higher among people living in rural and remote areas. We found that admissions for circulatory conditions, injuries, cancer or multimorbidity had significantly higher probability of having repeat CT.
Conclusion / ImplicationsThis study indicates that clinical factors such as cancer, injury and multimorbidity are factors contributing to repeat CT. A reduction of repeat CT over the study period among admissions without surgical procedure suggests a potential reduction of unnecessary CT scan, although further study is needed to fully capture whether this is an actual change in practice.
Using Linked Data to Explore the Association Between Statin Medicine Adherence and Hospitalisation Following A Large Patient Co-Payment Increase
Authors: Seaman Karla L , Bulsara Max K , Sanfilippo Frank M , Kemp-Casey Anna , Roughead Elizabeth Ellen , Bulsara Caroline E , Watts Gerald F , Preen David B
Published: December 2020

IntroductionIn January 2005, the Australian Government increased the consumer medication co-payment by 21%. Previous research found that this affected population-level utilisation of statins, which fell by 5% following the co-payment increase. The subsequent health impact on individuals reducing or ceasing use of statins is unknown.

Objectives and ApproachTo explore the two-year risk of acute coronary syndrome (ACS) or stroke-related hospitalisation among individuals who discontinued, reduced or continued statin medicines after the 2005 PBS co-payments increase. This was achieved through a retrospective cohort study using linked administrative Commonwealth and State datasets for the Western Australian population. Outcomes were assessed using the Fine and Gray competing risks method, with death as the competing risk, adjusting for demographics, comorbidities and medication history.

ResultsThere were 207,066 individuals identified as using statins before the co-payment increase. After the increase, adherence reduced in 12.5% of this cohort, and 3.3% ceased use. There were 4,343 ACS and stroke-related hospitalisations for the cohort in the follow-up period. Multivariate analysis indicated ceasing statins increased the risk of hospitalisation for ACS or stroke-related events by 18% (95%CI=0.1-40%) compared to continuing therapy. The risk was greatest for males <70 years. No differences existed for women or older men who discontinued statins. There was no difference in hospitalisation risk for those who reduced statins compared to those who continued.

Conclusion / ImplicationsYounger men ceasing statins after the 2005 co-payments increase had a higher risk of ACS and stroke hospitalisations compared to individuals who continued using statins. The findings highlight the importance of continued adherence to prescribed statin medication, and that discontinuing therapy for non-clinical reasons (such as cost) can have negative consequences. Additionally, it demonstrates to policymakers that substantial increases in consumer co-payments can result in adverse health outcomes.
Evaluation of The Manitoba Healthy Baby Prenatal Benefit: Is It Improving Birth and Early Childhood Outcomes for Metis Families?
Authors: Brownell Marni , Sanguins Julianne , Chartier Mariette , Nickel Nathan , Enns Jennifer , Chateau Dan , Burland Elaine , Sarkar Joykrishna , Lee Janelle Boram , Struck Shannon , Hinds Aynslie , Quddus Farzana , Chartrand Frances
Published: December 2020

IntroductionIn Manitoba, low-income pregnant women are eligible for the Healthy Baby Prenatal Benefit (HBPB), a prenatal income supplement. Research has demonstrated positive outcomes associated with HBPB, but it remains unknown if Metis women and children – who are of mixed European and Aboriginal descent and one of the most marginalized populations in Canada -- benefit from the program.

Objectives and ApproachThe Manitoba Metis Federation and the Manitoba Centre for Health Policy partnered to determine the impact of HBPB on Metis newborn and early childhood outcomes. We included all Metis women giving birth in Manitoba 2003-2011 who received income assistance during pregnancy (n=4,852), adjusting for differences between those receiving (n=3,681) and not receiving (n=1,171) HBPB with propensity score weighting. We used multi-variable regressions to compare outcomes between groups: breastfeeding initiation, low birth weight, preterm birth, small- and large-for-gestational age, Apgar scores, birth hospitalization length of stay (LOS), neonatal readmissions, infant hospitalizations, vaccinations at age 1 and 2, and child development scores at kindergarten.

ResultsHBPB receipt was associated with reductions in low birth weight (adjusted Relative Risk (aRR): 0.74 (95% CI: 0.58-0.94)) and preterm births (aRR: 0.78 (0.65-0.94)), and increases large-for-gestational age births (aRR: 1.21 (1.06-1.39)) and neonatal readmissions (aRR: 1.58 (1.05-2.37)). Birth hospitalization LOS was lower for newborns whose mothers received HBPB (Mean Difference 0.29 days). HBPB was associated with increases in vaccinations for children aged 1 (aRR: 1.08 (1.00-1.15)) and 2 (aRR: 1.12 (1.05-1.18)). No significant associations were found for small-for-gestational age births, Apgar scores, breastfeeding initiation, infant hospitalizations or child development scores.

Conclusion / ImplicationsA modest unconditional prenatal income supplement to low-income Metis women was associated with improved birth outcomes and child vaccinations; however, an association with increased neonatal readmissions warrants further exploration. Lack of significant associations between HBPB and child development measures suggests more sustained support may be necessary to improve longer-term outcomes.
Consent to Data Linkage in LSAC
Authors: Bandara Dinusha , Silbert Michelle , Daraganova Galina
Published: December 2020

IntroductionLinking the existing longitudinal data assets with administrative datasets provide the opportunity to transform longitudinal data into valuable assets to inform research and policy development.

Objectives and ApproachThis paper will focus on Growing Up in Australia: The Longitudinal Study of Australian Children (LSAC) data linkage landscape and consents which are invaluable for the development of evidence-based health-social-economic policies.

ResultsLSAC is Australia’s first nationally-representative longitudinal study of child development. Since 2004, two cohorts of 5,000 children and their parents have been interviewed every two years (B (baby) cohort and K (kindergarten) cohort). Over the years, multiple data linkage has been undertaken based on either parental consent or study child consent.

In 2004 parents were asked to consent on behalf of the study child to link Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Scheme (PBS)/Repatriation Pharmaceutical Benefits Scheme (RPBS) and Australian Childhood Immunisation Register (ACIR) administrative data to LSAC. The consent rate was 93% was for MBS, PBS and ACIR. Nearly 90% of B cohort parents provided consent to link Australian Early Development Census (AEDC)/National

Assessment Program – Literacy and Numeracy (NAPLAN) and 95.4% of K cohort parents provided consent to link NAPLAN.Then ten years later, children in the K cohort were asked to consent to MBS/PBS and income-support administrative data. The rates were 86.6% for MBS, 85.4% for PBS and 81.2% for income-support administrative data. Parental consent to link their MBS, PBS and income-support administrative data was also sought and these rates varied between 60% to 88%.

Conclusion/ImplicationsThe discussion will focus on differences in consent rates by time of consent, consenting individual and type of administrative data to be linked. Challenges and considerations that researches should be aware of when designing the linkage consent methodology will also be discussed.
Preparing Pathology Data for Linkage
Authors: Wiggins Nadine , Albion Tim , Stokes Brian , Jose Matthew
Published: December 2020

IntroductionThe Tasmanian Data Linkage Unit (TDLU) undertook a complex data linkage project in 2019 linking public and private pathology data to five disparate health datasets. Having linked pathology data previously, the unit was aware of the challenges it faced linking a large dataset covering a fourteen-year time span. The aim of this study was to use data-linkage to develop a Tasmanian dataset to quantify the burden and distribution of chronic kidney disease, including identifying barriers to dialysis treatment services.

Objectives and ApproachA cohort was selected from public and private providers of pathology services in Tasmania from 2004-2017 to support the establishment of a comprehensive researchable dataset. A linkage plan was developed that included detailed processes for cleaning and de-duplicating the pathology data prior to linkage. The larger private pathology dataset comprised 3.9 million records and data cleaning strategies were implemented. De-duplication created extensive clerical review and methods to reduce this work were devised and implemented as part of the linkage process.

ResultsDe-duplication based on exact matches reduced the size of the dataset from 3.9 million to just over 520,000 individuals. Internal linkage of the dataset resulted in approximately 47,000 ‘groups’ eligible for review. Structured Query Language (SQL) queries were constructed and the number of groups eligible for review decreased by 42%. Further analysis was conducted, which resulted in an appropriate ‘cut off’ threshold being determined for clerical review and an estimate of false positive links remaining was calculated.

Conclusion / ImplicationsMethods of reducing the amount of manual clerical review can be incorporated into a linkage design when there is a thorough understanding of the characteristics and content of the dataset to be linked. The methods used for this linkage project will be utilised for future projects using pathology data.
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.
Wales Inverse Care Law Programme - Design and Implementation of Routine Data Evaluation and Lessons Learned
Authors: Akbari Ashley , Griffiths Rowena , Puchades Alice , Thomas Sara
Published: December 2020

IntroductionThe Inverse Care Law (ICL) programme in Wales was setup to tackle health inequalities. Eligible populations from deprived communities, at higher risk of cardiovascular disease (CVD) were invited to a health-check and offered appropriate lifestyle and clinical interventions.

Objectives and ApproachEvaluation of this programme is vital to ensure that targeted interventions have been received by those most in need, including referrals to lifestyle services and support. The use of longitudinal population-scale routine-data required the development of an approach which was both efficient and cost effective. To achieve this, the Welsh Longitudinal General Practice (WLGP) data held in SAIL Databank was utilised. A programme-specific methodology was agreed by the programme-board and developed so that data collected from GP records prior, during and post health-check accurately identified the eligible population and allowed the effective assessment of lifestyle and clinical risk factors for CVD; poor diet, physical inactivity, smoking and high alcohol intake, so appropriate interventions could be offered.

ResultsWe evaluated the programme from 2015 to 2019 in 70 GP’s across the participating Health-Boards, and identified 175,671 individuals eligible by the programme criteria. Substantial preliminary work has been carried out to ensure the specification of outcome measures are both clinically and epidemiologically accurate and relevant. The final report scheduled for release in August-2020, which will evaluate the impact of the programme.

Conclusion / ImplicationsThis ambitious evaluation of a large-scale programme set in the community involving disparate systems and a range of stakeholders, has been both complex and challenging, requiring substantial effort to design and implement. We hope the outcomes and lessons learned from our experience will improve the design, implementation and evaluation of the programme and lead to improvements in services and the quality of life for people in Wales, and provide an exemplar for health care providers worldwide wishing to conduct similar programmes in the future.
Peripheral Arterial Disease Among First Nations People with Diabetes in Ontario, Canada: Linkage of Population-Level Healthcare Data
Authors: Shah Baiju R , Frymire Eliot , Jones Carmen R , Khan Shahriar , Slater Morgan , Walker Jennifer D , Green Mike
Published: December 2020

IntroductionIndigenous people worldwide are overrepresented and adversely effected by diabetes. Peripheral arterial disease and amputation are among the most feared complications of diabetes, leading to profound impacts on patients’ quality of life. This study linked population-level healthcare data to assess the risk of peripheral arterial disease among First Nations people in Ontario with diabetes.

Objectives and ApproachWe linked individual-level population-based healthcare administrative datasets with the Indian Register. The latter provides information on all registered or Status First Nations people in Canada. We compared First Nations people with diabetes with other people in Ontario with diabetes . Age and sex-adjusted rates peripheral revascularization procedures and lower-extremity amputations were calculated for each 12-month period from April 1, 1995, to March 31, 2015. Mortality among those with amputation was determined.

ResultsFirst Nations people received revascularization procedures at a comparable rate to other people in Ontario. However, they had lower-extremity amputations at 3- to 5-times the frequency of other Ontario residents. First Nations people had increased mortality after lower-extremity amputation (adjusted hazard ratio 1.15, 95% confidence interval 1.05 to 1.26), with median survival of only 3.5 years.

Conclusion / ImplicationsFirst Nations people with diabetes in Ontario had a comparable rate of revascularization but a markedly increased risk for lower-extremity amputation compared to other people in Ontario. This discordance suggests that peripheral arterial disease may be underdiagnosed or undertreated among First Nations people in Ontario, and demonstrates an important health inequity faced by First Nations people.
The Role of Partnership in The Integration of Intersectoral Data
Authors: Ratnasingham Sujitha , Camacho Ximena , McDonald Ted , Yada Nicole , Diverty Brent , Ford David
Published: December 2020

IntroductionThe importance of the determinants of health to health outcomes has long been established. Historically, data from each of these sectors has been captured in disparate, often siloed, sources. Attempts to integrate these data have faced a number of challenges including technical, legislative and interpretative barriers, creating inefficiencies and inhibiting knowledge sharing. Despite this, there have been notable successes where intersectoral data and health data have been brought together in a meaningful way. The establishment of strong partnerships, with academia, governments, privacy and legal sectors, and other bodies, across sectors has been key to this success. These partnerships ensure data are integrated, analyzed, and interpreted accurately and appropriately, while also leveraging existing investments and expertise.

Objectives and ApproachThe objective of this session is to explore the role of partnerships throughout the data integration life cycle, from initial discussions, to data integration, through to connecting research output to policy impact. Each of the presenters will discuss the successes, barriers and mitigation strategies they have experienced across different jurisdictions using real world examples.

ResultsHealth research institutes globally are increasingly able to access routinely collected intersectoral data from non-health sectors. In each institute, data are unique, complex and have been collected in a manner consistent with the needs of the sector. As health research institutes work to understand the data structures and determine the best way to link, use and interpret the information according to national and international best practice guidelines, it has become clear that it is critical to undertake this in partnership with experts from each sector, who understand how the data was collected and can guide appropriate interpretation. In addition, these partnerships have enabled the connection of policy priorities in other sectors with research done in the health sector using intersectoral data. For example, in addition to supporting government health departments, health research institutes have collaborated with other government ministries including immigration, social services, and education. This session will present real world examples from local (provincial), national and international contexts, and highlight a novel data platform, being developed to minimize barriers to data access and use across sectors and jurisdictions.

Conclusion / ImplicationsThe participants on this panel will demonstrate the importance of partnership throughout the data integration life cycle when working with intersectoral data using real world examples. Collaboration increases the value of integrated data to both health and non-health sectors, through the connection of policy priorities and support of research across the determinants of health.
Opioid Agonist Treatment and Risk of Mortality During an Opioid Overdose Public Health Emergency: A Population-Based Retrospective Cohort Study
Authors: Pearce Lindsay A , Min Jeong Eun , Piske Micah , Zhou Haoxuan , Homayra Fahmida , Slaunwhite Amanda , Irvine Michael A , McGowan Gina , Nosyk Bohdan
Published: December 2020

IntroductionOpioid agonist treatment (OAT) is a safe and effective treatment for opioid use disorder (OUD). However, people commonly stop and start OAT and their risk of death is high immediately after stopping. The prevalence of illicitly manufactured fentanyl and other highly potent synthetic opioids have increased in the illicit drug supply globally. Yet, there is limited evidence examining the relationship between OAT and mortality when these contaminants are widely available in the illicit drug supply.

Objectives and ApproachWe aimed to compare the risk of mortality on and off OAT in a setting with a high prevalence of illicitly manufactured fentanyl and other potent synthetic opioids in the illicit drug supply. We linked five health administrative datasets in British Columbia, Canada, creating a cohort of 55,347 people with OUD who received OAT during a 23-year period (1996 to 2018). We compared the risk of mortality on and off treatment over time, and according to time since starting or stopping treatment and by medication type.

Results7,030 of 55,347 (12.7%) OAT recipients died during follow-up. All-cause SMR was substantially lower on OAT (4.6 [4.4 to 4.8]) compared to off OAT (9.7 [9.5 to 10.0]). In a period of increasing prevalence of fentanyl, the relative risk of mortality off OAT was 2.1 [1.8 to 2.4] times higher than on OAT prior to the introduction of fentanyl, and increased to 3.4 [2.8 to 4.3] at the end of the study period (65% increase in relative risk).

Conclusion / ImplicationsThe protective effect of OAT on mortality increased as fentanyl and other synthetic opioids became common in the illicit drug supply, while the risk of mortality remained high off OAT. As fentanyl becomes more widespread globally, these findings highlight the importance of interventions that improve retention on opioid agonist treatment and prevent recipients from stopping treatment.