bluuebunny/crossref_metadata_2025 huggingface dataset:
Digitally excluded: Inequalities in the access and use of online learning technologies in Scottish secondary schools.
Authors: Treanor Morag , Troncoso Patricio
Published: September 2022

ObjectivesOur overall aim is to analyse the patterns and impacts of inequalities in the access to and use of digital learning technologies in Scottish secondary schools, especially for young people experiencing socio-economic inequalities.
ApproachUsing a novel dataset arising from the Scholar online learning platform (https://scholar.hw.ac.uk/), which (between June 2020 and June 2021) recorded usage data for c.133,000 students in 339 (95%) publicly-funded Scottish secondary schools, registered for Scottish Qualifications Agency exams: National 5 (age 15/16); Highers (age 16/17) and Advanced Highers (age 17/18). We focused on engagement, measured through average page visits and percentage of active users. We used descriptive statistics and visualisation to understand the patterns of usage across levels and portfolios/subjects, and multilevel negative binomial models to ascertain the extent of the variation across schools and its association with deprivation alongside other characteristics.
ResultsWe have found emerging evidence of a socio-economic gradient in the use of digital learning technologies, whereby the students attending the most deprived schools (according to SIMD and FSM-eligibility) show the lowest levels of engagement. Overall, engagement varies substantially across all levels and portfolios/subjects, but it is most noticeably higher in Sciences and in rural areas, which may well be unveiling student needs unmet by rural schools. Focusing on Sciences, variations across schools can be large, highlighting the need to understand what makes students in certain schools engage more or less with online learning. Should the data allow it, we will draw comparisons pre- and post-pandemic to explore the differences in engagement across students and schools.
ConclusionIn light of a widening socio-economic gap due to COVID-19 restrictions, these findings will help policymakers and practitioners better understand digital inequality, to assess the impacts of policy measures such as providing disadvantaged young people with laptops, to mitigate digital inequality and improve digital services to improve educational outcomes.
A Decolonizing Approach in Population Health Research: Examining the Association between the federal maternal evacuation policy on Maternal and Child outcomes in First Nation (FN) Communities in Manitoba.
Authors: Phillips-Beck Wanda , Nickel Nathan , Brownell Marni , Lavoie Josée , Annette Shultz , Cidro Jaime
Published: September 2022

ObjectivesResponding to the Truth and Reconciliation Commission of Canada’s (TRC) Call to Action #19 to close the gap in maternal/child outcomes, the goal of this study was to provide a baseline for select outcomes and demonstrate how an Indigenous/decolonizing framework can be applied to population health research involving Indigenous people.
ApproachThis retrospective cohort study was embedded within a decolonizing and Indigenous framework. Data extracted from administrative data housed at the Manitoba Centre for Health Policy was utilized to create a cohort of low-risk women residing in FN communities delivering a baby between 2005-2015. Two groups of mother/child dyads were compared: those evacuated for birth and those who were not required to leave home. Data were analyzed to assess the association between the evacuation policy on health outcomes.
ResultsDecolonizing and Indigenous frameworks are feasible, essential, and necessary in population health research involving Indigenous people. This methodology does not detract from scientific rigor. In keeping with Indigenous methodology, Knowledge Keepers and a Grandmother Advisor informed the research from the onset, including insightful dialogue about the study findings. Using such an approach, this study generated evidence that the present-day OFC policy continues to harm Indigenous women, families, and communities. The OFC policy is associated with increased odds of inadequate PNC (OR 1.64 1.51, 1.79 CI) and small for gestational age births (OR 1.25 1.02, 1.50 CI) and decreased breastfeeding initiation (OR 0.55 0.50, 0.61 CI) and maternal psychological distress diagnoses (OR .43 0.36, 0.51), after adjusting for various confounders.
ConclusionThis study documented a journey of an Anishinaabekwe in the space where western and Indigenous methodologies met. In answering the TRC call to improve maternal and infant outcomes, epidemiological and population health research requires epistemological frameworks that adequately incorporate the voices and realities of Indigenous people's lives while remaining scientifically rigorous.
Who lives in overcrowded households in north-east London? Cross-sectional study of linked electronic health records and Energy Performance Certificate register data.
Authors: Wilk Marta , Dezateux Carol , Liverani Silvia , Harper Gill
Published: September 2022

ObjectivesHousehold overcrowding is associated with adverse health outcomes, including increased risk of infectious diseases, mental health problems, and poor educational attainment. We investigated inequalities in overcrowding in an urban, ethnically diverse, and disadvantaged London population by pseudonymously linking electronic health records (EHR) to Energy Performance Certificates (EPC) data.
ApproachWe used pseudonymised Unique Property Reference Numbers to link EHRs for 1,066,156 currently registered patients from 321,318 households in north-east London to EPC data.
We measured household occupancy and derived the bedroom standard overcrowding definition (number of rooms relative to occupants’ sex and ages) to estimate overcrowding prevalence. We examined associations with: household composition (adults only, single adult+children, ≥2 working-age adults+children, ≥1 retirement-age adults+children, three-generational household); ethnic background (White, South Asian, Black, Mixed, Other, missing); and Index of Multiple Deprivation (IMD) quintile. We used multivariable logistic regression to estimate the adjusted odds (aOR) and 95% Confidence Intervals (CI) of overcrowding.
ResultsOverall, 243,793 (22.9%) people were overcrowded. People living in households with children, or three-generational households were more likely (aOR [95% CI] 3.79 [3.74 - 3.84]; 6.53 [6.41 - 6.66] respectively), and single adults or retirement age adults with children less likely (0.36 [0.35 - 0.38]; 0.36 [0.23 - 0.57] respectively), to be overcrowded. Overcrowding was more likely among people from Asian or Black ethnic backgrounds (1.24 [1.22 - 1.25] and 1.17 [1.15 - 1.19] respectively). There was a dose-response relationship between IMD quintile and overcrowding: OR 0.20 [0.20 - 0.21] in the least deprived compared to most deprived quintile.
ConclusionOne in five people in north-east London live in overcrowded households with marked inequalities by ethnicity, household generational composition, and deprivation. Up-to-date estimates of household overcrowding can be derived from linked housing and health records and used to evaluate the impact of economic policies on health and housing inequalities.
What are the risks for Domiciliary Care Workers in Wales from COVID-19?
Authors: Cannings-John Rebecca , Lugg-Widger Fiona , Robling Michael , Schoenbuchner Simon , Jones Hywel
Published: September 2022

ObjectivesDomiciliary care workers (DCWs) continued to provide social care to vulnerable adults in their own homes throughout the COVID-19 pandemic. However, evidence of pandemic impact upon DCWs’ health is mixed. The OSCAR study aimed to quantify the impact of COVID-19 upon health outcomes of DCWs in Wales, and explore causes of variation.
ApproachData for all registered DCWs in Wales are newly available via the SAIL Databank using a secured, privacy-protecting encrypted anonymisation process. Occupational registration data for DCWs working during the pandemic was combined with electronic health records data to describe health outcomes within the first two years of the pandemic. Rates of confirmed COVID-19 infections and health outcomes including mental health contacts, fit notes, respiratory infections, and mortality will be reported and explore variation (by factors such as age, sex, ethnicity, deprivation quintile, employer). We will also explore changes over time (pre- and post- onset of COVID-19 pandemic) in outcomes.
ResultsThe OSCAR study used anonymised health records for 15,727 registered DCWs in Wales. PCR-confirmed infection rates in the first full year of the pandemic (March20-February21) were 12% although lower in males (9%) than for females (12%). However, 28% of care workers received care for mental health with large differences observed between males (20%) and females (29%), and between workers from different health board regions (range 22% to 33%). The extent to which these represent pre-pandemic rates overall and how they compare to the broader community will be explored in our remaining work. A qualitative sub-study involving interviews with DCWs has informed our approach to modelling and to interpretation of findings.
ConclusionUsing novel anonymised occupational records at a national level and existing linked EHR data and qualitative interviews, the OSCAR study will quantify the risk of COVID-19 on DCWs' health and explore sources of variation. This will provide a secure base for informing public health policy and occupational guidance.
Using routinely collected data to develop and evaluate a clinical tool for early identification of palliative care needs in long-term care: The RESPECT Project.
Authors: Hsu Amy T. , Espadero Cathryn , Tanuseputro Peter , Bennett Carol , Beach Sarah , Roberts Rhiannon , Manuel Douglas
Published: September 2022

ObjectivesPrognostication tools reporting personalized mortality risk and survival can improve advance care planning and discussions about end-of-life care. We developed, validated, and implemented a mortality risk algorithm for older adults with diverse care needs in long-term care (LTC) homes, called the Risk Evaluation for Support: Predictions for Elder-Life in the Community Tool for LTC (RESPECT-LTC).
ApproachRESPECT-LTC was developed using routinely-collected health information on residents in LTC homes in Ontario, Canada. Model development used a cohort of LTC residents aged 50 years or older with at least 1 Resident Assessment Instrument—Minimum Data Set (RAI-MDS) record between January 2010 and December 2016. The primary outcome was mortality 6 months after a RAI-MDS assessment. We used proportional hazards regression with robust standard errors to account for clustering by the individual. We validated this algorithm, temporally, in a cohort of LTC residents who were assessed between January and December 2017. We constructed 37 risk bins based on incremental increases in estimated median survival of ~3 weeks among residents at high risk of death and 3 months among residents with lower mortality risk. We implemented and are evaluating the use of RESPECT-LTC for early identification of palliative care needs in LTC homes across Ontario.
ResultsDevelopment and validation cohorts included 2,228,176 and 328,204 RAI-MDS assessments, respectively. Mean predicted 6-month mortality risk ranged from 1.38% (95% CI 0.63%-1.61%) in the lowest to 91.97% (95% CI 81.47%-99.9%) in the highest risk group. Estimated median survival spanned from 42 days (15 to 128 d at the 25th and 75th percentiles) in the highest risk group to over 8 years (2,066 to 3,428 d) in the lowest risk group. The algorithm had a c-statistic of 0.730 (95% CI 0.726–0.736) in our validation cohort.
ConclusionRESPECT-LTC makes use of routinely-collected information to improve the identification of palliative and end-of-life care needs in LTC. Ongoing evaluation will assess its impact on referrals to palliative care, hospitalization at the end of life, and location of death.
Prenatal Exposure to Intimate Partner Violence and Developmental Health in Children at Kindergarten: Linking Canadian Population-Level Administrative Data.
Authors: Lee Janelle Boram , Brownell Marni , Afifi Tracie , Turnbull Lorna , Urquia Marcelo , Nickel Nathan
Published: September 2022

ObjectiveUsing population-wide administrative data, the objective was to provide Canadian evidence on the longitudinal relationship between maternal intimate partner violence (IPV) victimization and children’s developmental health. Using provincial prosecution records, we examined developmental vulnerability (DV) at kindergarten of children prenatally exposed to maternal IPV victimization compared to unexposed counterparts.
ApproachThis retrospective cohort study linked administrative datasets (legal, health, education, social services) from the Population Research Data Repository at the Manitoba Centre for Health Policy. Exposed mother-child pairs with 1+ prosecution record of maternal IPV victimization during pregnancy between 2003 and 2018 in Manitoba (n = 1,117) were matched to unexposed pairs (1:3) based on sex/birthdate of child and neighbourhood income. DV at kindergarten was measured across 5 domains (physical, social, emotional, language/cognitive [LC], communication/general knowledge) using the Early Developmental Instrument (EDI). Children without eligible EDI scores were excluded. Multiple logistic regression models were conducted to address the objective.
ResultsThe eligible cohort included 927 children (exposed n=229, unexposed n=698); 31.07% of the cohort was developmentally vulnerable in one or more domains (1/+) and 19.53% was developmentally vulnerable in two or more domains (2/+). Children who were prenatally exposed to maternal IPV victimization had increased odds of vulnerability across all 5 developmental domains (e.g., physical health/wellness: OR=2.83[1.95,4.10]; LC development: OR=2.45[1.65,3.64]). Unadjusted ORs showed statistically significant associations between maternal exposure of prenatal IPV victimization and DV in 1/+ (OR=2.70[1.98,3.68]) and 2/+ (OR=2.48[1.75,3.50]). When adjusted for covariates (e.g., maternal income assistance, mental health, child abuse history), no statistically significant relationship was found for any of the domains (e.g., LC development: aOR=0.98[0.53,1.81]), 1/+ (aOR=1.17[0.72,1.88]), and 2/+ (aOR=1.14[0.67,1.95]).
ConclusionThe unadjusted, statistically significant associations suggest children exposed to maternal IPV victimization prenatally may face associated social/health risks. The finding highlights the need to consider potential factors that put children at risk of DV when developing and implementing support systems/interventions for children exposed to maternal IPV victimization.
Evaluating the Family Nurse Partnership Programme in Scotland: a natural experiment using linked data from health, education and social care.
Authors: Cannings-John Rebecca , Robling Michael , Lugg-Widger Fiona , White James , Sanders Julia , Lau Mandy
Published: September 2022

ObjectivesThe Family Nurse Partnership (FNP) is an intensive home visiting service for teenage ﬁrst-time mothers, developed/trialled in the US and adapted/trialled across Europe. The Scottish Government aims to build on and supplement the existing evidence base for FNP, to assess eﬀectiveness of the programme, for future improvement work in Scotland.
ApproachThe commissioned natural experiment of FNP, takes advantage of existing information infrastructures in Scotland from health, education and social care and FNP programme implementation data. A cohort design was used covering ten Health Boards in Scotland. The cohort included first-time teenage mothers enrolled as FNP Clients between 2010 and 2016 and women who met FNP eligibility criteria but were pregnant when the programme was not recruiting (Controls). Outcomes are mapped to the Scottish FNP logic model and include those being tested statistically (n=34) or, where direction of effect is uncertain, outcomes are rare or data quality poor, descriptively (n=20).
ResultsWe established a model of data linkage to routine Scottish data. Approvals were obtained to access data on over 8000 mothers (FNP Clients and Controls) and their children which formed the study cohort and were mapped to routine health, education and social care data. Outcomes covered maternal (health (smoking, alcohol/drugs), subsequent pregnancies/births, education) and child (health, development, education, protection) domains. Observed baseline imbalances between study arms will be described and adjusted for in modelling. Results will be published by the time of the conference and include sensitivity analyses that explore a priori sub-groups, variation by health board, year of booking and programme dosage.
ConclusionThe impact of this evaluation will establish a robustly matched study cohort, develop the evidence base on FNP in Scotland and internationally, develop a more streamlined linkage and approval process, and identify outcomes for short-term follow-up and importantly for a longer-term follow-up of the mothers and their children.
Measuring serious violence: a comparison of self-reported and police-recorded outcomes in a UK birth cohort linked to local police data.
Authors: Cornish Rosie , Teyhan Alison , Macleod John , Tilling Kate , Brennan Iain
Published: September 2022

Objectives
• To compare self-reported and police-recorded serious violence using data from a longitudinal UK birth cohort linked to local (Avon and Somerset Constabulary) police records
• To assess the risk of police-recorded serious violence according to study participation status across the lifecourse
ApproachWe linked data from the Avon Longitudinal Study of Parents and Children (ALSPAC) to local police records on charges, cautions and other out of court disposals. We compared the risk of self-reported serious violence at 8 time points from 15 to 25 years to police-recorded serious violence at these ages. We then compared the risk of police-recorded serious violence among those actively participating in ALSPAC to those not participating at various time points from pregnancy onwards. We used logistic regression to examine whether differences in risk could be explained by socio-demographic and family characteristics associated with ALSPAC participation.
ResultsThe sample included 12,662 participants who had received fair processing materials and had not opted out of linkage to police records. They linked to a total of 6,283 offences, of which 933 were classified as serious violence (involving a total of 530 individuals). Self-reported serious violence in the past year was particularly high at 15 years (23.5%); at other ages it ranged from 3.7% (22 years) to 8.7% (20 years). Police-recorded serious violence was lower at all ages, peaking at 1.0% at 17 and 18 years. The risk of police-recorded serious violence was higher among those not participating in ALSPAC than among active participants, particularly during adolescence and early adulthood. This difference was only partially explained by socio-demographic and other factors.
ConclusionA key advantage of linkage to police records is it enables outcomes to be measured irrespective of study participation status as relying only on active participants leads to bias. Combining self-reported and police-recorded outcomes allows us to derive measures of offending that take account of the biases inherent in each.
Chronic disease management improves survival but not hospital presentations: a target trial approach using linked data from the Australian Stroke Clinical Registry.
Authors: Andrew Nadine , Ung David , Olayia Muideen , Dalli Lachlan , Churilov Leonid , Kim Joosup , Cadilhac Dominique , Sundararajan Vijaya , Thrift Amanda , Lannin Natasha , Nelson Mark , Srikanth Velandai , Kilkenny Monique
Published: September 2022

ObjectivesData linkage can provide sufficient breadth and size of data, to draw reliable estimates of effectiveness, at a population level using real-world data. We compared differences in survival and hospital presentations following stroke or transient ischaemic attack (TIA), based on whether a Medicare funded chronic disease management plan was claimed.
ApproachA population-based, comparative effectiveness study of Victorian and Queensland Australian Stroke Clinical Registrants (January 2012-June 2015), using the emulated target trial approach, was performed. Chronic disease management items were identified from Medicare claims in the 6-18 months post-stroke (exposure period). Data on covariates for model adjustment were obtained from hospital, pharmacy and aged care datasets. Outcomes at 19-30 months post-stroke were determined using the national death registry and state hospital data. Cox regression, adjusted using propensity score methods with inverse probability treatment weights was used to determine the effect of receipt of chronic disease management claims on outcomes.
ResultsOf 28,775 AuSCR registrants, 27,435 (95.3%) were linked across the Medicare, pharmacy and hospital datasets. Following exclusions, 11,574 registrants from 42 hospitals (42% female, median age 70 years, 27% TIA) were eligible for the study. Overall, 45% of participants received chronic disease management during the exposure period. After propensity score weighting, there was excellent balance between groups across 35 baseline variables (standardised differences <0.1). Receipt of chronic disease management (vs non-receipt) was associated with a 30% reduced hazard of death (adjusted Hazard Ratio [aHR]: 0.70, 95%CI: 0.57, 0.87) but a 17% increase in hospital presentations (aHR: 1.17, 95%CI: 1.12, 1.23). Variation was observed between planned (aHR: 1.21, 95%CI: 1.10, 1.33) and unplanned (aHR: 1.15, 95%CI: 1.07, 1.23) presentations.
ConclusionWe provide an evaluation of the effectiveness of Medicare funded chronic disease management within “real world” healthcare provision, thereby demonstrating the value of linked population data in health services research. Further work is underway to examine causal mechanisms.
The dynamics of the nursing workforce: insights into retention and exit using registration data.
Authors: Jamieson Michelle
Published: September 2022

ObjectivesThe Nursing and Midwifery Council (NMC) require data to be collected to enable regulatory functions, with nurses re-registering every 3-years, which provides a powerful picture of the workforce. This could answer questions to inform the NMC, as well as policy makers. Linked to other data, opportunities for impact are considerable.
ApproachThis pilot project, funded by the Economic and Social Research Council, aims to use NMC data captured at two time points – March 2018  to give a snapshot before the pandemic, and March 2021 during the pandemic - in research that enables a better understanding of the dynamics of the nursing profession in the UK, pre- and hopefully moving towards post-pandemic. An observational study using anonymised administrative data collected and held by the NMC as part of the registration and revalidation process on approximately 700, 000 registrants across the United Kingdom.
ResultsThis emerging pilot study will report the initial results as to likelihood of ceasing registration by relation age, gender, and geographically.
ConclusionThis pilot study will give an indication of the groups within the nursing profession who are at particular risk of leaving. Findings will provide an opportunity to understand the potential of NMC registrant data to enable future studies into the workforce as well as workforce policy implications.
The clinically extremely vulnerable to COVID: Identification and changes in healthcare while self-isolating (shielding) during the coronavirus pandemic.
Authors: Butler Jessica , Nath Mintu , Blana Dimitra , Ball William , Beech Nicola , Black Corri , Osler Graham , Peytrignet Sebastien , Rzewuska Magdalena , Wilde Katie , Wozniak Artur , Sawhney Simon
Published: September 2022

ObjectiveIn March 2020, Scottish government identified people clinically extremely vulnerable to COVID due to pre-existing health conditions. These people were advised to strictly self-isolate (shield) at home. We examined who was identified as clinically extremely vulnerable, how their healthcare changed during isolation, and whether this process exacerbated healthcare inequalities.
ApproachWe linked all individuals on the shielding register in NHS Grampian to their in-patient and out-patient healthcare records from 2015 through 2020. We analysed the method of patients’ identification as clinically extremely vulnerable (via an algorithmic NHS record scan or designated ad hoc by their care-providers). We measured out-patient, in-patient, and emergency healthcare attendances, and compared use rates between two 3-month periods before and during the first strict isolation period. We evaluated changes in care use between those shielding and the general non-shielding population, and differences between shielding sub-populations (by clinical reason for shielding, age, sex, and socio-economic deprivation).
ResultsThe shielding register included 16,092 people (3% of the population). 42% of people on the register were not identified by national healthcare record screening, including the majority of cancer and immunocompromised patients. People added to the register by their care-providers were more likely to be young and less economically-deprived.
Shielders’ healthcare use decreased during isolation (rate compared to pre-isolation: 0.65 out-patient, 0.54 scheduled in-patient; 0.75 emergency in-patient; 0.71 A&E). However, people shielding had better maintained care than the non-shielding population (e.g. RR 2.9 for scheduled in-patient care). There were inequalities in whose scheduled care was maintained while shielding: younger people and those with cancer had significantly higher visit rates. However, there were no differences in care-preservation between men and women or between socioeconomic deprivation levels.
ConclusionsThe reliance on emergency care while shielding indicates that, overall, continuity of care for existing conditions was not optimal. However, there was notable success in maintaining care for cancer. We suggest that integrating demographic and primary care data would improve identification of the clinically vulnerable and help equitably prioritise care.
Impact of the COVID-19 pandemic on Self-Harm and self-harm/suicide Ideation and subsequent mortality in Northern Ireland: a longitudinal, population-wide data linkage study.
Authors: Maguire Aideen , Kent Lisa , O'Hagan Denise , Paterson Euan , O'Reilly Dermot
Published: September 2022

ObjectiveTo utilise Northern Ireland’s unique population-wide registry of self-harm and self-harm/suicide ideation, linked to other administrative health and death records, to examine the impact of the COVID-19 pandemic and related restrictions on presentations for self-harm/ideation and subsequent mortality risk.
ApproachLongitudinal, population-wide registry data on all presentations to Emergency Departments for self-harm (SH) or self-harm/suicide ideation (I) (Apr 2102-2020) were linked to primary care registration and death records within Northern Ireland Trust Research Environment (NITRE). Data were divided pre-restrictions (Apr 2012-Feb 2020) and during-restrictions (Mar 2020-Sept 2020). Raw pre- and during numbers were compared. Auto Regressive Integrated Moving Average (ARIMA) models were trained considering trends and seasonal effects. Monthly forecasts were compared to actual numbers, at population level and within sociodemographic groups (gender, age, method). Survival analysis examined risk all-cause/suicide mortality after presenting with SH/I before versus during restrictions.
ResultsMar and Apr 2020 saw 15.3% and 32.9% drop respectively in the total number of presentations for SH/I. From May 2020 numbers returned to within 2% of the monthly average. The sharp decrease in Mar/Apr 2020 was observed in both males and females but varied by age sub-categories. Presentations in those aged >64years remained as expected and presentations in the <16 years were higher than expected, compared to a decrease in presentations in those aged 16-64years. The restrictions impacted on variations by method of harm and by hospital. Suicide mortality given previous SH/I appears to increase slightly for males during the COVID restrictions with further analysis underway.
ConclusionAlthough at a population level it looks like Emergency Department presentations for SH/I decreased in first 2 months of the pandemic before returning to “normal”, the presentation profile changed dramatically by age, method and hospital. Further ARIMA predictive modelling and survival analysis are underway to explore subsequent mortality risk.
Spinal pain prevalence in Wales and associated risk factors.
Authors: Evans Hywel Turner , Farr Ian , Byfield David , Stacey Benjamin , Bailey Damian
Published: September 2022

ObjectivesSpinal pain predisposes patients to a more sedentary lifestyle, a major risk factor for cardiovascular disease and other comorbidities. There is little recent evidence of the current prevalence of spinal pain and associated risk factors in Wales. This analysis addresses this gap in knowledge.
ApproachThis retrospective e-cohort study used linked National Survey for Wales (NSW) data and Welsh Demographic Services data held in the Secure Anonymised Information Linkage (SAIL) Databank. All years of the annual NSW data from 2016 to 2020 (N = 34,123) were used to determine the prevalence of spinal pain in Wales. The likelihood of developing spinal pain was quantified by multivariate regression cross-sectional analysis, adjusting for the presence of the same person in multiple years of the survey data. Predictors included socio-demographic and health status, including mental health and cardiovascular disease.
ResultsSpinal pain affected 5% of people who took part in the NSW. This analysis also shows that spinal pain disproportionally affects some sub-populations of Wales. Factors associated with a greater likelihood of spinal pain were cardiovascular disease, presence of at least one mental health condition, living in a more deprived area, and education level. This is especially pertinent as the burden of cardiovascular risk is disproportionately elevated in the Welsh population and Wales represents a distinctive demographic, characterised by geographical constraints and low socio-economic status. These factors will be presented and discussed in detail.
ConclusionThe prevalence of spinal pain and associated risk factors in Wales was quantified. This work will help inform public health action to encourage interventional and prevention strategies to improve the quality of life for those suffering with spinal pain across Wales.
The use of linked administrative data to explore the impact of formal social care services involvement in childhood on education and offending outcomes.
Authors: Leyland Anna
Published: September 2022

Young people who are care experienced are overrepresented in the criminal justice system and in general have worse outcomes in education than their non-looked after peers (DfE & Hinds, 2019; Prison Reform Trust, 2017). Recent evidence has reported that children who have a social worker (classified as child in need or those with a child protection plan), but who do not enter the care system, can have worse outcomes in education than those children who are looked after (DfE, 2019b). There remains little research evidence about the extent to which children with a social worker become involved with criminal justice services or how the age, duration and nature of formal social care service involvement may impact on education and offending outcomes. Researchers have been challenged by the lack of a sufficiently sized quantitative data, that crossed social care, education and offending domains. In work funded by ADR-UK, the present research project uses the newly linked DfE-MoJ administrative dataset to explore how different forms of formal social care services involvement impacts on education and criminal justice outcomes. Multi-level models will explore the role of formal child social care services amongst other multi-systemic risk and protective factors for education and offending. The presentation of his work will include preliminary statistics and insights into the challenges and potential further use of the linked dataset for researchers.
Data provenance tracking and reporting in a high-security digital research environment.
Authors: Scheliga Bernhard , Markovic Milan , Rowlands Helen , Wozniak Artur , Wilde Katie , Butler Jessica
Published: September 2022

ObjectiveTo protect privacy, routinely-collected data are processed and anonymised by third parties before being used for research. However, the methods used to do this are rarely shared, leaving the resulting research difficult to evaluate and liable to undetected errors. Here, we present a provenance-based approach for documenting and auditing such methods.
ApproachWe designed the Safe Haven Provenance (SHP) ontology for representing provenance information about data, users, and activities within high-security environments as knowledge graphs. The work was based on a case study of the Grampian Data Safe Haven (DASH) which holds and processes medical records for 600,000 people in Scotland. The SHP ontology was designed as an extension to the standard W3C PROV-O ontology. The auditing capabilities of our approach were evaluated against a set of transparency requirements through a prototype interactive dashboard.
ResultsWe demonstrated the ability of the SHP ontology to document the workflow within DASH: capturing the extraction and anonymisation process using a structured vocabulary of entities (e.g. datasets), activities (e.g. linkage, anonymisation) and agents (e.g. analysts, data owners). Two provenance reporting templates were designed following interviews with DASH staff and clinical researchers: 1) a detailed report for use within DASH for quality assurance, and 2) a summary report for researchers that was safe for public release. Using a prototype data-linkage project, we formalised queries for report generation, and demonstrated use of automated rules for error detection (e.g., data discrepancies) using the structure of the SHP knowledge graphs. All of the project outputs are available under an open-source license.
ConclusionsThis project lays a foundation for more transparent high-quality research using public data for health care and innovation. The SHP ontology is extendible for different domains and potentially represents a key component for further automation of provenance capture and reporting in high-security research environments.
A Synthesis of Algorithms for Multi-Jurisdiction Research in Canada.
Authors: Lix Lisa , Vasylkiv Viktoriya , Ayilara Olawale , Dahl Lindsey , Poppel Allison , Al-Azazi Saeed
Published: September 2022

ObjectivesValidation of algorithms to identify health conditions (e.g., diabetes) or service use (e.g., high-cost users) in administrative data is time-consuming and expensive. Many algorithms are only assessed in a single jurisdiction, which may limit generalizability. Our study described the characteristics of multi-jurisdiction algorithms from a Canadian algorithm repository.
ApproachWe summarized algorithms captured in the open-access Algorithms Inventory developed by Health Data Research Network (HDRN) Canada. This inventory contains published algorithms identified through a series of systematic reviews of peer-reviewed research. Algorithms included in the inventory were validated or assessed for feasibility of implementation in two or more provinces/territories; they encompass measures of population health, health service use, and determinants of health. Descriptive statistics were used to characterize the study data on such features as year and discipline of the study journal, algorithm topic area, jurisdictions included in the study, validation source data, and algorithm elements (i.e., diagnosis codes).
ResultsThe HDRN Canada Algorithms Inventory currently contains 166 algorithms from 63 published articles. The majority of articles were published in 2010 or later (89%) and more than half (56%) of the articles were found in journals with a clinical focus. Feasibility studies (79%) were conducted more often than validation studies (21%). Most algorithms used data from the provinces of British Columbia, Manitoba, Ontario, and Nova Scotia. The majority of algorithms (72%) measured population health concepts, such as chronic physical health conditions (63%; e.g., hypertension) and mental health conditions (14%; e.g., depression). Algorithms about the determinants of health (17%) mostly focused on measures of socioeconomic status (37%) derived from census data. Multi-jurisdiction algorithms about health service use were least common (11%).
ConclusionThis synthesis revealed few Canadian multi-jurisdiction validation studies have been conducted and not all provinces/territories are equally represented. New validation studies, particularly about health service use and determinants of health, will increase the consistency and accuracy of Canadian research. Reusing published algorithms from this inventory will facilitate research reproducibility.
“All about communication" - a perspective on our public involvement practices in the Networked Data Lab in Grampian.
Authors: Rzewuska Magdalena , Gordon Sharon , Ball William , Butler Jessica , Achds Ppie Group
Published: September 2022

ObjectivesThe Networked Data Lab (NDL) in Grampian has been embedding evidence-informed practices of working in active partnership with the public in producing insights on population health care. We aim to describe and explain our experiences by reflecting on this journey.
ApproachWe co-developed a National Institute for Health Research (NIHR) guidance-based patient and public involvement and engagement (PPIE) framework with the funder, designed local activities and developed processes and materials for each activity. We created, trained, and involved our PPIE group and delivered tailored online interactions with people that represent service users. We applied best practice principles: institutional buy-in, clarity of purpose, two-way communication, accessibility to broader public, continuity, be designed to impact and evaluated. Existing guidance proposes how to involve the public, whereas a communication theory can explain what 'really happens' during involvement and why. We documented and engaged in reflective assessments of our practice and applied a communication perspective to describe it inductively.
ResultsWe use two communication concepts. We exchange information/ideas with the public (Transmission Model) to help decide what we will do, clarify issues, and solve problems. This approach focuses on what's said/meant/heard, expressing it clearly and through the best channel. The PPIE lead's role in that is to minimise interferences in transmission. We also explore what evolves from communication between people (Coordinated Management of Meanings theory) – the nature of our relationships, who is included, what views and experiences individuals bring into our conversations, what they want from it, how it impacts them, and how cooperation/conflicts emerge. This second communication concept is a step outside traditional power relations. The PPIE lead's role in that is to shape a dialogue where multiple perspectives are heard and productive tension is maintained.
ConclusionSpecific methods (such as NIHR guidance) are only one component of effective involvement practice. Communication is the primary social process underpinning public involvement. Understanding communication may help to guide how to use it as a creative force behind co-production in health data science.
Ethical considerations in the use of Machine Learning for research and statistics.
Authors: Toms Alice , Whitworth Simon
Published: September 2022

This paper, based upon new guidance created in collaboration with researchers from several national statistical institutes, explores the main ethical considerations associated with the use of machine learning techniques for aggregate statistics. The aim of this paper is to provide applied, practical ethical guidance for researchers using machine learning techniques.
Following an extensive literature review, alongside discussion and collaboration with a number of national statistical institutes, it was identified that there was a need for applied guidance on the use of machine learning for the production of official statistics by the international research and statistical community. Feedback was gathered from interested stakeholders, which found that whilst there were resources available to researchers relating to the ethical considerations of machine learning projects, these focus mainly on operational uses of machine learning, and furthermore, lacked advice on how to practically mitigate ethical issues that arise throughout the project lifecycle.
The guidance focuses on four main ethical considerations, found to be prevalent within machine learning research, and offers ways to mitigate these issues should they arise. These are: the importance of minimising and mitigating social bias and discrimination within machine learning research, and clearly communicating these, and the limitations of our research; the need to consider the transparency and explainability of machine learning research, and the implications this has for reproducibility; the importance of maintaining accountability throughout machine learning processes, ensuring that models are used only for their intended purposes, and that different stakeholders are aware of their responsibilities; the need to consider the confidentiality and privacy risks arising from the data used, both in relation to training data which is fed into the machine, and outputs resulting from the machine learning’s findings.
The guidance has been well-received following its release, and feedback from the wider user community to date has been positive. The IPDLN conference provides an opportunity for further feedback to be collated to ensure that the guidance continues to be valuable to its intended audience.
Birth outcomes among Métis women and infants in Manitoba, Canada: A linked administrative data study using health system and justice system data.
Authors: Enns Jennifer , Sanguins Julianne , Brownell Marni , Turnbull Lorna , Urquia Marcelo , Mahar Alyson , Quddus Farzana , Casiano Hygiea , Chartrand Shannon Allard , Nickel Nathan
Published: September 2022

ObjectiveManitoba has one of the highest incarceration rates among Canadian provinces, and because of Canada’s racist and colonial policies, the number of Métis women in custody is disproportionately high. In this study, we examined birth outcomes among Métis and all other Manitoba women who were incarcerated while pregnant.
ApproachUsing linked administrative health and justice system data, we developed a 2004-2017 cohort of mother-infant dyads with a live birth (n= mothers; n= infants). We identified all Métis mother-infant dyads, and then divided them into 3 mutually exclusive groups: a) prenatal incarceration; b) post-natal incarceration; c) no incarceration. We developed matched comparison groups for each exposure based on Métis identity, maternal age, geography and income, and, after adjusting for other potentially confounding variables (e.g., maternal age, maternal mental health, and socioeconomic factors), we examined risk differences in birth outcomes among Métis women and infants between exposure groups.
ResultsThe cohort included n=534 mothers who were incarcerated while pregnant (a), n=1,677 mothers incarcerated postnatally (b), and n=14,084 mothers never incarcerated (c). When we compared prenatal vs postnatal incarceration (a vs b), we found that women incarcerated during the prenatal period were more likely to have a low birth weight infant (RD: 4.2, 95% CI: 3.0, 5.4), preterm birth (RD: 5.1, 95% CI: 3.7, 6.5) or Caesarean birth (RD: 5.5, 95% CI: 3.8, 7.1) and were less likely to have a large-for-gestational-age infant (RD: -3.8, 95% CI: -5.1, -2.5) or to initiate breast feeding (-3.4, 95% CI: -5.5, -1.3). In the prenatal vs no incarceration comparison (a vs c), the same outcomes were statistically significant as above; however, the risk differences were even more pronounced.
ConclusionPrenatal incarceration is associated with poor birth outcomes for all mothers and infants in Manitoba; however, Métis women and children are disproportionately affected, further perpetuating inequities they may already experience. Canadians must acknowledge the harms of racist policies and practices, and work to support the health and well-being of Métis people.
Outcomes of children involved with child protection in Manitoba, Canada: a demonstration project for working in partnership across government, community organizations, and academia.
Authors: Brownell Marni , Sinclair Stephanie , Nickel Nathan , Bennett Marlyn , Casiano Hygiea , Durksen Anita , Decaire Elizabeth , Flaten Lisa , Frank Kayla , Hunter Mikayla , Murdock Nora , Nash Chris , Pfau Jamie , Prior Heather , Rodgers Jay , Scatliff Colette , Sinclair Scott , Slavina Anna , Walld Randy
Published: September 2022

ObjectivesSPECTRUM is a unique multi-disciplinary, cross-sector collaborative research partnership between academics, government, and community organizations in Manitoba working together to address complex social problems. In our first research project, partners identified the need for quantitative evidence around outcomes of children involved with Child Protection Services (CPS), using linked administrative data.
ApproachFrom the SPECTRUM partnership, a research team with CPS expertise was established, including government policy-makers, community organizations representing First Nations families, and academics from multiple disciplines. The research is guided by an Advisory Circle of First Nations Knowledge Keepers. Linking health, education, CPS, and justice data we developed a matched cohort identifying children involved with CPS (2007-2018) for whom there was discretion in the decision to 1) place them in out-of-home care (n=19,718), or 2) keep them in their family home while providing services (n=28,154). Instrumental Variable analysis, with CPS agency as the instrument, will be used to compare outcomes.
ResultsFollowing the trajectories of these two groups of CPS-involved children over time, we will compare their mental and physical health, educational achievement, and justice system involvement while accounting for individual-level (e.g., age, sex, chronic health conditions) and family-level (e.g., family income, maternal mental health, number of siblings) factors that may contribute to these outcomes. Preliminary findings will be workshopped with the SPECTRUM partnership to facilitate discussions on framing the evidence for policy makers. The SPECTRUM policy team will then prepare policy recommendations for government to consider. The Advisory Circle and a youth advisory squad will facilitate contextualizing and mobilizing findings. Actions taken by government in response to material provided will be monitored and will inform the development of subsequent research projects conducted by SPECTRUM.
ConclusionGovernment and community stakeholder involvement throughout bolsters the likelihood of evidence translating into program and policy changes. This is not a situation where academics are telling government how to do their jobs – this is government, community organizations, and academics working together with the shared goal of better outcomes for children.