bluuebunny/crossref_metadata_2025 huggingface dataset:
Maternal mental health and children’s development: a bi-directional relationship?
Authors: Lowthian Emily , Bedston Stuart , Akbari Ashley , Fry Richard , Huxley Katy , Johnson Rhodri , Kristensen Sara Madeleine , Owen Rhiannon , Taylor Chris , Griffiths Lucy
Published: September 2022

ObjectivesResearch on bi-directional associations between self-reported caregiver mental health and child development is mixed. Through linkage of a cohort study and primary care data, we examine whether maternal mental health diagnoses, treatment and symptoms are bi-directionally associated with child development, namely emotional and conduct problems, hyperactivity and peer problems.
ApproachWe accessed 14 years of data by linking the Millennium Cohort Study (in Wales) to anonymised individual-level population-scale health and administrative data within the Secure Anonymised Information Linkage (SAIL) Databank. We identified maternal mental health problems using John et al’s (2016) existing algorithm for anxiety and depression diagnoses, symptoms and treatment. We measured child development using parent-reports of the Strengths and Difficulties questionnaire. Outcomes were tested when the child was 3, 5, 7, 11 and 14 years of age. We used Bayesian Structural Equation Modelling, specifically Random-Intercept Cross-Lagged Panel Models, to analyse within and between-person associations.
ResultsWe found that mother’s mental health was strongly associated over time, as were children’s development difficulties. Cross-lagged associations from mother to child were weakly positively associated at age 3 to 5 for child total scores, and at age 11 to 14 for child emotional problems. In contrast, child development associations with maternal mental health were significant from age 7 to 11 for total scores, emotional and peer problems, but weakly associated at age 3 to 5, and 11 to 14 for conduct problems. Hyperactivity had few associations. Few associations at the same-time point were found, but emotional problems at age 11 and 14 were positively associated, as were hyperactivity at age 14, and peer problems at age 11. Between-person effects were consistently strongly associated.
ConclusionWe find mixed evidence for bi-directional associations, but strong between-person associations. Overall development and emotional problem models showed more bi-directional relationships; child development was positively associated with mother’s mental health event at age 7 for all models except hyperactivity, conduct problems were weakly associated at age 5 and 11.
Disparities in adherence to diabetes screening guidelines among males and females in a universal care setting: A population-based study of 1,389,697 adults.
Authors: Kaul Padma , Chu Luan Mahn , Dover Douglas , Yeung Roseanne O. , Eurich Dean T , Butalia Sonia
Published: September 2022

ObjectivesNational guidelines recommend that all adults over the age of 40 years undergo screening for diabetes at least once every 3-years. We examined the association between sex and adherence to diabetes screening after accounting for age, urban/rural residence and material deprivation.  We also examined the subsequent incidence of prediabetes and diabetes in adherent and non-adherent individuals.
ApproachOur study is based on a retrospective population-level inception cohort of adults aged 40 - 79 years without pre-existing diabetes or cardiovascular disease on April 1, 2013. Data on hospitalizations, emergency department visits, ambulatory clinic visits, physician billing claims, pharmaceutical claims, centralized laboratory data, vital statistics death registry, and census data at the neighbourhood level were linked at the patient level for years 2013 to 2020. Adherence during a 3-year screening period (2013 – 2016) and prediabetes and diabetes during a 4-year follow-up period were examined. Multivariate logistic regression was used to examine the adjusted association between sex and adherence.
ResultsAmong 1,389,697 individuals (49.2% male, 50.8% female) adherence rates were 69.9% in males and 79.8% in females. Sex-differences in adherence were largest in younger individuals (58.0% and 72.6% and in males and females aged 40-44 years, respectively) and consistent across rural/urban residence and material deprivation categories. Females were more adherent (adjusted odds ratio 1.93; 95% confidence interval 1.90 to 1.97) than males. Among adherent males and females, 65.3% and 64.8% had at least one Haemoglobin A1C, respectively during the screening period. During the follow-up period, prediabetes and diabetes rates among males who were adherent were 25.9% and 5.2%, compared to 8.8% and 2.1% among non-adherent males; and 20.2% and 2.9% among adherent and 7.3% and 1.3% among non-adherent females.
ConclusionsDespite lower rates of adherence to screening, males have higher rates of prediabetes and diabetes compared to females. Our study highlights the need to develop education campaigns and targeted interventions at the local and population level to raise awareness and improve diabetes screening rates in young people, especially males.
Considerations and Consequences when using First Nations Identifiers in Administrative Data Research.
Authors: Durksen Anita , Phillips-Beck Wanda , Sarkar Joykrishna , Quddus Farzana , Enns Jennifer , Chartier Mariette , Nickel Nathan , Brownell Marni
Published: September 2022

ObjectivesLack of consistent and relevant Indigenous identifiers in Canadian data sources leads to misclassification and under-recognition of the health and social issues impacting Indigenous Peoples, further perpetuating the harms of colonization. We are evaluating and optimizing our approach for identifying First Nations (FN) individuals in administrative data in Manitoba.
MethodsIn partnership between the First Nations Health and Social Secretariat of Manitoba and the Manitoba Centre for Health Policy, we sought to evaluate to what extent four distinct Manitoba datasets derived from surveillance and social programs were able to identify FN individuals among a cohort of children in low-income Winnipeg neighbourhoods between 2005-2016. In choosing data sources to identify FNs, the population and research question were considered.
We then compared the number of FNs identified in each dataset to the First Nations population research file, considered gold standard, but cognizant of its roots in colonial systems of registration.
ResultsThe total cohort comprised N=78,864; among these, n=27,347 children were identified as FN in either the FN registry or at least one of the datasets.  The FN registry was the most sensitive dataset and identified 85.7% of these individuals.  The two program datasets identified 58.2% and 46.2%, and the surveillance-based datasets each identified less than 10%.
The First Nations Registry is critical to accurately identify FN individuals. Our analyses demonstrated that without it we would miss 23.5% of those identified as FN in at least one other dataset. However, using it alone could potentially cause us to miss 15% of FN individuals identified in other datasets.
The proportions of FN individuals that would be missed by excluding any of the other datasets were smaller (<6%).
ConclusionWe found inconsistent FN identification across the datasets evaluated. Among the issues is that some datasets rely on self-identification. In Manitoba, no single administrative dataset can reliably and comprehensively identify FN individuals, and linking multiple datasets together is currently our best approach.
Revisiting the Quality of the Scottish Record Linkage System.
Authors: Clark David , Reid John , Bailey Dave , Iqbal Suhail , Clydesdale Heather , Humphreys Ken , Carruthers Jade , Henderson Lena , Reid Martin , Ramsay Adebusola
Published: September 2022

ObjectivesTo evaluate the quality of linkage carried out by operators in the Trusted Third Parties (TTPs) in Public Health Scotland (PHS) and National Records of Scotland (NRS).
To compare results with a PHS automated production system.
To produce individual reports to feedback results to operators, informing areas for improvement.
ApproachA test dataset (n=274,479) containing names, dates of birth, sex and postcode, was derived from hospital episodes and additional synthetic records added. For a proportion of records, some variables were perturbed. The true reference index number was retained to compare against the indexes returned by operators from matching to the population spine.
A run of the Medical Record Linkage (MRL) system (used to routinely link the centrally held hospitalisations, cancer and death registrations over the last 25 years) was executed without clerical review, to provide a benchmark for the TTPs.
Recall, precision and F-measures were calculated to compare results.
ResultsThere were 5 reports produced, including the MRL run. NRS contributed a single run, and PHS-TTP offered 3. Quality overall was excellent, with some variation dependent on operator, methods, and spine used. The MRL run was ranked 3rd overall for F-measure, with overall precision of 99.69% and 97.36% recall. Where data had been unperturbed precision was 99.92% with 99.90% recall. The best ranked run was carried out by a member of PHS TTP, with 99.72% precision (99.93% unperturbed) and 98.77% recall (99.94% unperturbed). NRS results showed precision of 99.56% (99.91% unperturbed) and 96.71% recall (99.80% unperturbed).
Individual reports were produced and tailored to highlight the types of perturbations where each operator performed strongly or otherwise, encouraging operators to learn and adapt processes in future.
ConclusionData Linkage in Scotland has evolved over 5 decades, more recently with the introduction of TTPs as key support services for research projects. However, little evaluation of the quality of linkage has been conducted. The results demonstrated by this exercise provide re-assurance to researchers that linkage quality remains high
Building partnerships, capacity, and knowledge through a use of newly linked child development and education datasets in Ontario, Canada.
Authors: Janus Magdalena , Sinclair Jeanne , Hove Jennifer , Davies Scott
Published: September 2022

ObjectivesThe objective of this study was to establish a partnership between a university and a jurisdictional education body (Education Quality and Assessment Organization, EQAO) which would allow creation of a linked dataset from kindergarten to later grades in order to examine educational trajectory in mathematics in Ontario.
ApproachBuilding on mutual goals of improving the understanding of children’s learning trajectories, we developed a project with an investigator team that included university researchers and representatives of the provincial educational assessment body, to link a database of child development status in kindergarten (Early Development Instrument/EDI data, including neighbourhood socioeconomic/SES index) with academic assessment EQAO data, and received research funding. A deterministic matching process was employed to match the datasets. We examined differences between the unmatched and fully matched cases and constructed a growth mixture model of math scores in grades 3, 6 and 9, with key EDI/SES variables as covariates.
ResultsDespite lacking a common identifier, we successfully matched approximately 50% of the EDI cases from 2002-2014 (n=183,771). Effect sizes indicated negligible differences between matched and unmatched, except for SES and child development status, which were poorer for unmatched group. A 3-class solution was the best fit for a 20,000-person subsample of math trajectories based on AIC, BIC, ICL, and entropy values as well as sufficiently high proportions of posterior probabilities, which indicate confidence in class membership. 61% of sample showed steady moderate-high achievement; 9% started high, but declined, and 30% deteriorated then improved. Males, children in low SES, and those with adequate kindergarten EDI outcomes had better math achievement trajectories than females, children in high SES, and those with poor kindergarten outcomes.
ConclusionGiven the two datasets were collected without explicit linkage plan, the matching was only 50%, nevertheless resulting in a large database that allows study of early development antecedents of students’ educational trajectories. The partnership between university and EQAO ensures a wide dissemination of results in both academia and policy worlds.
Impact of vaccination on COVID-19-associated admissions to critical care in England: a study of population linked data with quantitative bias analysis for linkage error.
Authors: Harrison David , Watkinson Peter , Doidge James , Shankar-Hari Manu , Mouncey Paul , Patone Martina , Coupland Carol , Hippisley-Cox Julia , Rowan Kathryn
Published: September 2022

ObjectivesTo explore associations between COVID-19 vaccination and admission to critical care with COVID-19 in England, by age group, dose, and over time.
ApproachWe conducted a population cohort study by linking the Case Mix Programme national clinical audit of adult intensive care to the National Immunisation Management System, combined with population denominators from the Office for National Statistics. We compared patient characteristics and estimated rates of critical care admission by vaccination status and age group and explored variation in admission rates and relative protection over time. Finally, we used quantitative bias analysis to explore sensitivity to potential linkage error.
ResultsBetween 1 May and 15 December 2021 (England’s Delta wave), 11,431 patients were admitted to adult critical care units in England with COVID-19, of whom 10,141 were included in the cohort. Vaccinated patients were older, with higher levels of severe comorbidity and immunocompromise. Unvaccinated patients were greatly overrepresented, with people who had received two or more doses being at least 92% less likely to be admitted compared with those who were unvaccinated, for all ages, once the second dose had been rolled out. Those aged 50 years or older who had received a booster/third dose were 98-99% less likely to be admitted compared with unvaccinated. Our analysis was robust to linkage error, but closely related analyses could have been exquisitely sensitive to missed links.
ConclusionOur findings are consistent with a high degree of vaccine-acquired protection against critical care admission, with little waning in the first 6-9 months for those aged under 70. While our analysis was robust to linkage error, significant care is warranted with related analyses of linked vaccination and outcome databases.
Experiences of Red River Métis Accessing COVID Vaccines: A partnership-based, whole-population linked administrative data study.
Authors: Nickel Nathan C. , Sanguins Julianne , Ekuma Okechukwu , Taylor Carole , Eze Nkiruka , Balogun Oludolapo Deborah , Casidsid Hera , Brownell Marni , Chartier Mariette , Chartrand Francis , Chateau Daniel , Driedger Michelle , Enns Jennifer , Katz Alan , Klos Olena , Lix Lisa , Mahar Alyson , Neault Rachelle , Urquia Marcelo
Published: September 2022

ObjectivesRed River Métis are Indigenous people hailing from the Canadian Prairies who have historically experienced poor health outcomes due to colonial practices. Researchers from the Manitoba Métis Federation (MMF) partnered with health services researchers to test whether MMF-led COVID initiatives were associated with access to COVID-19 testing and vaccines.
ApproachWe linked the Métis Population Data-Base from the MMF (to identify Red River Métis) with whole-population COVID testing and vaccination data and health and social services administrative data (for information on sociodemographics and confounders) to complete this retrospective cohort study. We used restricted mean survival time models to test whether COVID-19 vaccination differed between Métis and all other Manitobans (AOM); models adjusted for demographics, comorbidities, and other characteristics (age, socioeconomic status, urbanicity, and mental health status). Data were stratified by sex and subsequent effect modification analyses tested whether associations differed by sex and physical health comorbidities.
ResultsCOVID testing rates were lower during the first year of the pandemic among Métis than among AOM. During the second year of the pandemic, this finding was reversed - Métis accessed tests at higher rates. There was no difference between Métis and AOM in accessing first vaccine doses before implementation of MMF-led initiatives. After initiatives were put in place, Métis received their second COVID vaccine, on average, 1.3 (95% CI 1.9-0.6) days sooner than AOM, after adjusting for confounders. Effect modification analyses showed this relationship was concentrated among females – female Métis received their second vaccine 1.7 (2.6-0.8) days sooner than female AOM; differences were non-significant for males. Métis with 2+ comorbidities received their vaccine second 2.9 (5.3-0.5) days sooner than AOM with 2+ comorbidities.
ConclusionPublic health initiatives prioritizing Métis for vaccines improved uptake. Initiatives led by Métis to improve COVID outcomes were critical to supporting Métis during the course of the pandemic. Public health response efforts need to operate from a standpoint that honours Indigenous sovereignty in their design and implementation.
Adding a Residential Dimension to the Scottish Population Spine – CHI-UPRN Residential Linkage (CURL).
Authors: Clark David , Dibben Chris
Published: September 2022

ObjectivesIn Spring 2020, Public Health Scotland (PHS) were tasked with seeding the NHS Scotland Community Health Index (CHI) with a Unique Property Reference Number (UPRN). This was to allow understanding of the impact on people residing with someone infected with COVID-19, but utility goes much further than this.
ApproachAddress fields were extracted from CHI records (August 2020) of persons still alive in Scotland or who died since January 2020.
Some pre-formatting was carried out on unique address strings that were then processed at DataHub, a service, provided by the Improvement Service, helping public sector organisations secure access to a data matching service.
Files were returned with a best matching UPRN attached, and a category indicating the quality of the match.
To enhance the seeding of care homes addresses, unmatched CHI records were manually searched, and UPRN added where expert knowledge determined it was a care home address.
ResultsThere were 3,208,951 unique address strings processed, relating to 5,828,951 CHI registrations, including people deceased since January 2020. In total, 5,207,389 (89.3%) people had a UPRN returned with match categories EXCELLENT (78.8%), GOOD (8.3%), or FAIR (2.2%).
Only 60% of the 40,196 current CHI records that were pre-indicated with an institutional care home flag could be automatically matched to a UPRN. Following the manual expert review, 42,334 people in adult care homes could be identified with a specific UPRN.
A random sample of 1,724 address pairs, stratified by match category and urban-rural category, was selected for quality assurance review by an independent checker. Results have still to be verified, but precision is estimated to be more than 95% of matches to the correct UPRN.
ConclusionThe creation of the CHI-UPRN Residential Linkage (CURL) is a major development to CHI as a data linkage tool in Scotland. CHI has long been used as a population spine for patient-level data linkage in research projects but introducing a property-level dimension through CURL provides new opportunities for researchers.
Documenting First Nations Access to COVID Vaccines: A whole-population linked administrative data study.
Authors: Nickel Nathan C. , Phillips-Beck Wanda , Star Leona , Okechukwu Ekuma , Taylor Carole , Balogun Oludolapo Deborah , Brownell Marni , Casidsid Hera , Chartier Mariette , Chateau Dan , Enns Jennifer , Katz Alan , Lavoie Josee , Lix Lisa , Mahar Alyson , Romanescu Razvan , Urquia Marcelo
Published: September 2022

ObjectivesFirst Nations (FN) organizations worked with public health and governments to improve FN access to COVID-19 vaccines by prioritizing FN communities in vaccination initiatives. FN researchers and data scientists partnered to test whether these efforts were associated with increased access to COVID-19 vaccines among FN compared with all other Manitobans.
ApproachThis retrospective cohort study linked whole-population administrative data from (i) the First Nations research file, (ii) COVID testing and vaccination data, and (iii) health and social services for sociodemographic data and information on potential confounders. Several public health policies were created to improve access to COVID vaccines among FN; we tested whether FN received their 1st and 2nd vaccines sooner than all other Manitobans (AOM) using restricted mean survival time models. We adjusted for sociodemographic characteristics, comorbidities, and whether FN lived on- or off-reserve. We conducted sex-specific and effect modification analyses to test whether associations differed by sex.
ResultsPrioritizing FN to receive vaccines was associated with increased vaccine uptake compared with AOM. After adjusting for various confounders, FN received their first dose 15.5 (95% CI 14.9 – 16.0) days sooner than AOM and their second dose 13.9 (13.3 – 14.5) days sooner than AOM. Sex-stratified and subsequent effect modification analyses using interaction terms, found that differences were greater for males than for females: FN males received their first dose 18.1 (17.3 – 18.8) days sooner than AOM males and FN females received their first dose 12.9 (12.2 – 13.7) days sooner than AOM females. This pattern held for second doses as well. FN with comorbidities also received vaccines sooner than AOM with similar comorbidity levels 20.9 days (23.1 – 18.8) among those with 3+ comorbidities.
ConclusionPartnerships between public health entities and FN organizations that respect FN community sovereignty were instrumental in supporting FN health and well-being during COVID-19. Policies and programs that prioritized FN people for vaccines improved uptake saving lives. This partnership-based COVID-19 response can provide a framework for future public health efforts.
Supporting health and well-being among infants born to First Nations parents experiencing incarceration: a partnership-based whole-population administrative data study.
Authors: Nickel Nathan , Phillips-Beck Wanda
Published: September 2022

ObjectivesGenerations of racist and colonial policies have resulted in First Nations (FN) people being systematically over-represented in Canada’s legal system. FN researchers partnered with data scientists at the University of Manitoba to document the birth outcomes associated with experiences of prenatal incarceration among FN families.
ApproachThis retrospective cohort study linked whole-population administrative data from (i) Manitoba’s legal system to identify infants born to people incarcerated while pregnant, (ii) the First Nations research file to identify FN families, (iii) hospital records for birth outcomes, (iii) health and social services data for measured confounders. All Manitoba residents with a live birth (Jan 2004 - Dec 2017), and their infants, were eligible. Generalized linear models tested for differences in birth outcomes associated with experiencing incarceration while pregnant. Propensity score weights adjusted for measured confounders. Effect modification analyses tested whether associations differed between FN and all other Manitobans (AOM).
ResultsFN people were more likely to experience incarceration while pregnant (n=1449) than AOM (n=278). Before propensity score adjustment, incarcerated pregnant people differed on important sociodemographic confounding characteristics from pregnant people who were not incarcerated – e.g., lower socioeconomic status, higher prevalence of pre-existing mental disorders, higher prevalence of having a previous child taken into care of family services, more likely to live in an urban setting. After propensity score adjustment, confounding characteristics were balanced between exposure groups. After adjustment, infants born to people incarcerated while pregnant were more likely to be low birth weight at term (aRR 1.76; 95% CI 1.41-2.18), be born preterm (aRR 1.44; 1.33-1.56), be small for gestational age (aRR 1.40; 1.28-1.54). Associations did not differ between FN and AOM families.
ConclusionIncarceration of pregnant people compromises their infant’s birth outcomes and perpetuates intergenerational systems of oppression that exacerbate health inequities. To improve the health and well-being of FN people, we must implement Calls to Action outlined by the Truth and Reconciliation Commission to redress these harms experienced by FN people.
The National Centre for Healthy Ageing data platform: establishing an Electronic Health Record derived linked geographic cohort.
Authors: Andrew Nadine , Beare Richard , Ravipati Tanya , Parker Emily , Collyer Taya , Ung David , Srikanth Velandai
Published: September 2022

ObjectivesElectronic Health Record (EHR) data have created unique opportunities for research. However, these data are: not curated, siloed and poorly integrated. We describe linkage of EHR data from an entire health service with government datasets to establish a linked geographic cohort within the Australian National Centre for Healthy Ageing (NCHA).
ApproachResearch suitable EHR items were identified from Peninsula Health (NCHA partner) data systems based on: published research, availability and quality. Items underwent end-user Delphi processes to identify core research items (consensus=70%). Approvals were obtained from the Australian Institute of Health and Welfare (AIHW) for linkage with: Medicare, medication dispensings, Aged Care and death registry data through the AIHW spine, created using identifiers from the Medicare Consumer Directory (MCD); and from the Centre for Victorian Data Linkage for linkage to state-wide hospital data. Identifiers for local residents aged ≥60 years who attended Peninsula Health were submitted for probabilistic data linkage.
ResultsDelphi participants included 10 researchers from 8 fields/departments and 13 clinicians from 11 clinical areas. To date 7 of the 11 datasets have been reviewed. N=107 potentially suitable data items were identified and 96 gained consensus for inclusion in the core dataset. Of the 49,767 Health Service users (episodes: Jan 2010-Dec May 2021) submitted for linkage, 98.4% were successfully linked to the MCD (Median age 72.2 years, 52.2% female, 1.8% regional residence). An additional 172,290 individuals living within the geographic region but not contained within the EHR dataset were identified in the MCD for linkage to the government datasets. Linkage accuracy was impacted by inaccurate/incomplete address fields (~30%) and lack of adherence to naming conventions within the EHR data.
ConclusionLinking with EHR data is complex. Having an established EHR research dataset will improve the feasibility of data linkage and potential for future expansion of linkages within the NCHA. Once merged, the data will be used to underpin a range of research activities related to ageing and dementia.
Harnessing the power of data linkage to enrich the cancer research ecosystem in Canada.
Authors: Urquhart Robin , Awadalla Philip , Bhatti Parveen , Dummer Trevor , Gravel Simon , Vena Jennifer , Alvi Riaz , Broet Philippe , Kendell Cynthia , Kirsh Victoria , Lettre Guillaume , Skead Kimberly , Shen-Tu Grace , Sweeney Ellen , Turner Donna
Published: September 2022

ObjectivesWe will enrich the cancer research ecosystem in Canada through linking cancer registry and administrative health data to the Canadian Partnership for Tomorrow’s Health (CanPath) cohort and biobank. CanPath is Canada’s largest population health study, including 1% of the Canadian population, which seeks to investigate cancer development.
ApproachWe are achieving record-level linkage of the CanPath harmonized dataset to provincial cancer registry data, and hospitalization and ambulatory care data from the Canadian Institutes of Health Information (CIHI). The CanPATH harmonized dataset includes comprehensive genetics, environment, lifestyle, and behaviour data. Our linkage activities will result in interprovincial data sharing, with centrally-held linked data, a first in Canadian history. We will demonstrate the CanPath-cancer registry-CIHI linkage potential by investigating the impact of the COVID-19 pandemic on healthcare utilization and outcomes among those with cancer.
ResultsThe linkage is ongoing and anticipated to be completed by September 2022. Linked data will be made available through the CanPath Data Safe Haven, a cloud-based solution that meets the legal requirements of the data sharing agreements and provincial privacy policies, and is accessible to researchers through secure access. The CanPath Data Safe Haven will be a federated data platform for Canadian researchers to access, analyze, and contribute research in a collaborative environment. By linking these datasets, this project will: address concerns related to accessibility of cancer data in Canada; bring more value to existing data; support an enhanced understanding of the impacts of cancer on marginalized populations; and create a more integrated approach to cancer data access and management.
ConclusionCanPath will be the first program in Canadian history to combine the wealth of cohort resources with cancer registry and administrative health data in a central location at a national scale. We will provide a single point of access for researchers to conduct novel investigations into cancer development and outcomes.
Estimating Disease Heritability from Electronic Healthcare Records: A Proof-of-Concept Study.
Authors: Lix Lisa , Hamad Amani , Yan Lin , Delaney Joseph A. , Wall-Wieler Elizabeth , Jozani Mohammad Jafari , Banerji Shantanu , Ayilara Olawale , Hu Pingzhao
Published: September 2022

ObjectiveA family history of a chronic disease often predicts disease risk, with predictive value determined by heritability, the proportion of variation in risk explained by inherited genetic factors. Our objective was to assess the validity of disease heritability estimates from electronic healthcare records (EHRs) that capture family relationships and disease diagnoses.
ApproachA population-based investigation was conducted using healthcare records from Manitoba, Canada for 1970 to 2021. We constructed family relationships for up to four generations using health insurance registration information containing unique family and individual identifiers. Health histories for family members were created using diagnosis codes in hospital and physician visit records. Linear mixed-effects models were used to estimate heritability (h) for 130 chronic health conditions using open-source Clinical Classifications Software that defines clinically-meaningful disease categories. Comparisons between EHR-derived estimates and genetically-derived estimates from published studies were used to assess validity of the methodology.
ResultsHealth insurance registration data were used to construct 10,000 families that included 116,879 individuals. Median family size was 9 (interquartile range: 8). Median observation time was 39.6 years (interquartile range: 25.7). Males comprised half (51.0%) of family members. A total of 272,114 familial relationships were identified; slightly more than half (53%) were first degree (i.e., child and parent) relationships. One-third (33.2%) of families were comprised of four generations; only 15.3% were comprised of two generations. Heritability estimates were consistent with published genetically-derived estimates for several conditions, including diabetes (EHR h = 0.29 vs. 0.22), anemia (EHR h = 0.21 vs. 0.20), and asthma (EHR h = 0.34 vs. 0.33). However, inconsistencies were identified for pancreatic disorders, gastrointestinal conditions, some mental health conditions, and heart disease.
ConclusionEHRs provide a promising approach to explore heritability of selected health conditions in large, diverse populations. Inconsistencies between EHR-derived and genetically-derived estimates are indicative of the limitations of diagnoses recorded for administrative purposes. Future research will explore sex-specific heritability estimates and effects of change in disease diagnosis coding over time.
The effect of opioid analgesics, benzodiazepines, gabapentinoids, and opioid agonist treatment on mortality risk among opioid-dependent people.
Authors: Bharat Chrianna , Gisev Natasa , Barbieri Sebastiano , Dobbins Tim , Larney Sarah , Farrell Michael , Degenhardt Louisa
Published: September 2022

BackgroundAs dispensings for benzodiazepines and gabapentinoids have increased in recent years, risk of increased mortality has been identified, particularly when used with opioids. There is limited research examining use of these medicines among people with opioid dependence and whether mortality risk varies according to opioid agonist treatment (OAT) status. This study characterizes patterns of opioid analgesic utilization and concomitant use of benzodiazepines, gabapentinoids and OAT among people with opioid dependence initiating opioid analgesics. It also assesses mortality risk associated with exposure to these medicines.
MethodsRetrospective cohort study in New South Wales, Australia, including 28,891 people with documented opioid dependence initiating opioid analgesics between July 2003 and December 2018. Linked administrative records provided data on prescription dispensings, sociodemographics, clinical characteristics, OAT and mortality. Generalised estimating equation models estimated incidence rate ratios (IRR) comparing periods in and out of OAT for the number of opioid analgesic dispensings. Periods of concomitant use of opioid analgesics, benzodiazepines, gabapentinoids, and OAT were identified. Cox models assessed associations between concomitant medicines use with mortality risk.
ResultsAt the time of opioid analgesic initiation, 43.7% of the cohort were in OAT. The most commonly initiated opioid was codeine (67.8%). In the 90 days prior to the index opioid dispensing, benzodiazepines were more frequently dispensed than gabapentinoids, but rates varied over time. Between 2004 and 2018, benzodiazepine dispensings decreased (41.7% to 21.1%) while gabapentinoid dispensings increased (0.2% to 7.9%). Incidence of opioid analgesic dispensings was higher during periods out of OAT compared to in OAT (5.8 v. 2.3 per person-year; IRR 0.39, 95% CI 0.38, 0.41). Analyses investigating associations between medicine exposure and mortality are ongoing.
ConclusionPeople with opioid dependence had high rates of recent benzodiazepine utilization and current OAT enrollment at the time of opioid analgesic initiation. OAT was associated with a significant reduction in opioid analgesic prescribing.
Is PAX-Good Behaviour Game (PAX) Associated with Better Mental Health and Educational Outcomes for First Nations Children?
Authors: Chartier Mariette , Munro Garry , Jiang Depeng , McCulloch Scott , Au Wendy , Brownell Marni , Santos Rob , Turner Frank , Boyd Leanne , Murdock Nora , Bolton James , Sareen Jitender
Published: September 2022

ObjectivesPAX, a mental health promotion approach, has been shown to decrease negative mental health outcomes and improve academic achievement. These effects have yet to be shown among Indigenous children. We evaluated PAX for improving First Nations children’s outcomes following a research process wherein community members and researchers work more collaboratively.
ApproachBuilding on a long-term relationship with Swampy Cree Tribal Council, community members, First Nations leaders and researchers worked together through all phases of the project. This cluster randomized controlled trial used population-based health, social services, and education administrative data that allowed de-identified individual-level linkages across all databases through a scrambled health number.  Our cohort of 725 children from 20 First Nations schools were randomized to PAX (n=469, 11 schools) or wait-list control (n=256, 9 schools). We used propensity score weighting and multi-level modeling to estimate the differences over time (2011 up to 2020) between children exposed to PAX and those who were not.
ResultsDifferences in baseline characteristics were found between the two groups of children, despite the cluster randomization. After applying propensity score weights, children in the PAX group had significantly greater decreases in conduct problems (β:-1.08, standard error(se):0.2505, p<.0001), hyperactivity (β:-1.13, se:0.3617, p=.0018 ), and peer problems (β:-1.10, se:0.3043, p=.0003) and a greater increase in prosocial scores (β:2.68, se:0.4139, p<.0001) than control group children. The percentage of children in the PAX group who met academic expectations was higher than those in the control group, however, only grade 3 numeracy (odds ratio (OR):4.30, confidence interval (CI):1.34 – 13.77) and grade 8 reading and writing (OR:2.78, CI:1.01 – 7.67) met statistical significance.  We found no evidence that PAX was associated with less emotional problems, diagnosed mental disorders or better student engagement.
ConclusionThese findings suggest that PAX was effective in improving First Nations children’s mental health and academic outcomes in First Nations communities. Examining what works in Indigenous communities is crucial because approaches that are effective in some populations may not necessarily be culturally appropriate for remote Indigenous communities.
Establishing an ethics and governance framework for access to and linkage of electronic health data for research projects.
Authors: Parker Emily , Ravipati Tanya , Beare Richard , Srikanth Velandai , Andrew Nadine
Published: September 2022

ObjectivesTo develop an ethics and governance framework for the National Centre for Healthy Ageing (NCHA) data platform that supports: streamlined access to data for research; transfer of data into secure data environments; linkage with a range of external data sources and incorporation of a variety of data types.
ApproachThe NCHA data platform is bringing together Electronic Health Data across an entire region for health service and clinical research. Methods used to establish the framework include: review of existing national (Australian Institute of Health and Welfare’s data governance framework) and international (Guiding principles from ISO/IEC 385051:2017) frameworks, stakeholder engagement and early piloting through use cases. End-users and executive staff (clinical, research and legal) were consulted to ensure compliance and streamlining with existing processes. A data access governance committee was formed with expertise in data access, linkage of large health data sets, ethics, health data privacy and legal policy.
ResultsData governance frameworks and policies from established state registries, large clinical trials and health data sharing and linkage centres (n=7) were reviewed and a summary was presented to the committee.  An existing data access and sharing agreement and principles was chosen as a template based on existing stakeholder collaborations and relevance to the two NCHA institutes (Monash University and Peninsula Health). The draft agreement and principles were modified and piloted for data access use cases (n=6). Feedback from researchers (n=3) was used to refine the framework. The committee identified that additional frameworks, such as those outlined by the Centre for Victorian Data Linkages, will be required to accommodate future data sharing and linkage activities with industry and government.
ConclusionOur work highlighted the importance of developing a robust governance framework with the ability to incorporate a range of data, that was acceptable to end-users and had sufficient flexibility to incorporate future yet to be identified data types. Ongoing work will expand the framework to include additional data linkage activities.
Rapid and Responsive Record Linkage to support NSW Health COVID-19 pandemic response.
Authors: Nelson Michael , Pye Victoria , Nair Pooja , Harrold Tim , McCallum Lisa , Taylor Lee
Published: September 2022

ObjectiveTo support the NSW Health COVID-19 pandemic response using rapid record linkage to provide key information to inform policy and practice.
ApproachThe Centre for Health Record Linkage hosts a secure, high-performing data linkage system, including a Master Linkage Key (MLK) of administrative health datasets, and generates linked data to inform policy decisions.
Over the course of the COVID-19 pandemic, a series of rapid record linkage projects were requested for a range of purposes.

Characteristics of people hospitalised with COVID-19
Characteristics of the NSW Health workforce notified with COVID-19
Information on COVID-19 tests carried out on Aboriginal people and people born overseas
COVID-19 Vaccine Effectiveness in the Sydney Metropolitan area

ResultsThe COVID-19 Communicable Disease Register – a linked dataset of COVID Case notifications, negative COVID tests, Admitted Patient Data, Emergency Department Data, Death Registrations and records of the Australian Immunisation Register, has been updated 34 times since March 2020, providing a rich dataset to answer questions on the health outcomes of COVID-19 cases, such as hospitalisations and ICU admissions, on access to testing in vulnerable populations, and on vaccine effectiveness in the Sydney Metropolitan area. The update frequency, scope and size of the Register has changed throughout the pandemic. We will describe examples of how this information has been used to inform policy decisions at different points in the pandemic response.
ConclusionThe combination of an up-to-date MLK, established data supply infrastructure and procedures, and supportive legislation enabled NSW Health to provide rapid and responsive record linkage to support the COVID-19 pandemic response.
Linking Databases in Collaborative and Culturally Safe Ways to Evaluate the Effectiveness of PAX-Good Behaviour Game (PAX) in First Nations Communities.
Authors: Chartier Mariette , Munro Garry , Murdock Nora , Turner Frank , Boyd Leanne , Katz Laurence , Brownell Marni , Jiang Depeng , Martinson Amanda , Fortier Janique , Sareen Jitender
Published: September 2022

ObjectivesThe overarching research objective was to examine, culturally adapt, and further evaluate a mental health promotion approach called the PAX within 8 First Nations communities. This presentation describes a research process whereby First Nations community members and researchers worked in collaborative and culturally safe ways to reach their research objectives.
ApproachBuilding on a strong existing relationship between Swampy Cree Tribal Council (SCTC) members from Northern Canada and academic researchers, a team was formed to prepare the research proposal. This team included community members, leaders from First Nations organizations, decision makers, program developers and researchers. This research was guided by two-eyed seeing, a principle developed by a Mi’kmaw Elder, that recognizes both Indigenous and Western ways of knowing, where one worldview does not dominate the other. The research process was compliant with Ownership, Control, Access, and Possession (OCAP) principles that ensure self-determination of First Nations communities over research involving their people.
ResultsA First Nations community liaison was hired as a research team member ensuring that traditional and cultural protocols were adhered to and connections to community members facilitated and sustained. Over the course of the research, the team met monthly to oversee implementation and annually with SCTC community members for guidance and for sharing and interpreting results.  All 8 communities were actively engaged and benefitted from their involvement. Seeing the value of examining PAX’s effectiveness through linkages to administrative datasets, community members supported engagement of an additional 16 First Nations communities thereby ensuring an adequate sample size for the study. Health and education databases were linked to program data from 20 First Nations communities. Infographics, lay summaries and presentations were prepared for meaningful knowledge exchange.
ConclusionFirst Nations communities deemed it essential to understand what works and for whom regarding mental health promotion. Building relationships with First Nations community members based on trust and respect provided information that was relevant and beneficial to their communities. This relationship-building should be considered when developing research timelines and budgets.
Accelerate the Creation of the cross agency Human Services Dataset.
Authors: Nair Pooja , Smith Michael , Theochari Maria
Published: September 2022

ObjectiveDevelop a digital solution for automated data ingestion and rapid update of the large-scale Human Services Dataset (HSDS) which brings together data from across government to take a powerful view of the service usage to improve outcomes of communities.
ApproachThe Centre for Health Record Linkage (CHeReL) hosts a secure, high-performing data linkage system, including a Master Linkage Key (MLK) of administrative health datasets, and generates linked data to inform policy decisions. Since 2018, CHeReL has also been annually linking over 70 frontline datasets to create a large-scale longitudinal linked dataset of over 2.5 billion records.
Over the course of 2021, the CHeReL led a project to incrementally improve the currency of the HSDS in compressed timeframes. This provided opportunity to assess value and feasibility of more frequent updates to the dataset within the evaluation and investment context.
ResultsThe automated data Ingestion and validation led to a significant reduction in the data processing timeframes for the Accelerated linkage. We observed 80% reduction in Data ingestion and 75% reduction in data validation.
The digital solution also allows asset owners to register and approve new data providers, monitor their data provision in real-time and report on data sourcing. This provides transparency to the Asset Owner and reduces the need for time-intensive and manual processes to jointly monitor data provision with the Data Linkage Centre.
The digital solution also has the capability to support Data Providers automate their data feeds and provide on a regular basis through a secure non- touch process. This reduces on-going workload and ensures on-time provision.
ConclusionThe process requires a systematic change in the upstream data source, and we requested participating agencies to send us data in an agreed format. The receipt of files in standard format is pivotal for reducing the overall timeframes of HSDS creation and leverage it for policy and investment purpose.