bluuebunny/crossref_metadata_2025 huggingface dataset:
Uso potencial del camu-camu (Myrciaria dubia) en el desarrollo de alimentos funcionales
Authors: Londoño Hernández Liliana , Montalvo Rodriguez Constanza , Arroyave Sierra Oscar Julián , Garcia Gonzalez Estefania
Published: August 2022

El rápido incremento en la obesidad, la hipertensión y otras enfermedades crónicas no transmisibles, debido al consumo de alimentos ultraprocesados como grasas y azúcares, y a la situación de inseguridad alimentaria en muchos países de América Latina, ha promovido el desarrollo de alimentos mínimamente procesados, seguros y saludables de fuentes no tradicionales, como los frutos amazónicos, que además de nutrir, tienen un efecto benéfico en la salud. El objetivo de esta revisión bibliográfica fue analizar los principales compuestos biológicos de interés, para evaluar las oportunidades actuales del camu-camu en el desarrollo de alimentos funcionales, teniendo en cuenta la producción científica anual. Entre los frutos amazónicos estudiados en los últimos años, se destaca el camu-camu, un fruto amazónico pequeño, que se caracteriza por su alto valor nutricional, especialmente por su contenido de vitamina C, carotenoides, polifenoles (flavonoides, taninos, antocianinas, etc.) y otros compuestos reconocidos como antioxidantes, cuyo consumo está asociado a la disminución del envejecimiento celular y el estrés oxidativo. Debido a que tiene una vida útil relativamente corta, se han desarrollado diversos productos para garantizar su conservación por más tiempo, además de asegurar sus propiedades nutricionales y funcionales. Este fruto se aprovecha para obtener jugos, yogures, helados, mermeladas y refrescos, entre otros productos. Sin embargo, uno de los mayores potenciales actuales es el uso como ingrediente y/o materia prima en la producción de alimentos convencionales, para otorgarles características de “alimentos funcionales”, para generar un beneficio a la salud, más allá de suplir las necesidades nutricionales.
Research feasibility and ethics in Scottish new-born blood spot archive.
Authors: Cunningham-Burley Sarah , McCartney Daniel L , Campbell Archie , Flaig Robin , El Orange Clare , Porteous Carol , Aitken Mhairi , Mulholland Ciaran , Davidson Sara , McCafferty Selena M
Published: August 2022

ObjectivesThere were two objectives to this study: 1) to gauge public opinion on the use of Guthrie card-derived blood samples for epidemiological and biological research; and 2) to evaluate the feasibility of recovering meaningful molecular data from these samples.

ApproachTo address the first objective, a 2-day Citizens’ Jury was conducted in partnership with Ipsos MORI, comprising a diverse adult sample in terms of age, sex, working status and social grade (n=20). Jurors were asked whether research access to Guthrie card blood tests would be in the public interest. To address the second objective, DNA methylation (DNAm) was profiled from samples from 58 Generation Scotland participants, whose Guthrie cards had been stored from birth for between 32 and 38 years. Analyses were performed on Guthrie DNAm samples to determine whether previously-reported associations with perinatal maternal smoking behaviours were detectable.

ResultsThe Citizens’ Jury yielded an overall positive response towards data sharing for health research. Concerns were raised about data protection and security, control and oversight, and commercial use. The overall verdict was that access to Guthrie card data would be in the public interest, conditional on the purpose of the research, regulated access procedures, ethical oversight and provision of opportunities for participants to opt out.

DNAm detection rates from Guthrie samples were lower than from samples stored in tubes. However, it was possible to confirm linkage to the correct individuals in Generation Scotland using DNAm-derived estimates of genotype and sex. A significant association was observed between a DNAm-based score for smoking and perinatal maternal smoking status derived from the baseline Generation Scotland questionnaire.

ConclusionWe showed that: 1) public support exists for using Guthrie samples in research, conditional on certain safeguards; 2) DNAm can be profiled from cards stored for up to 38 years and can predict maternal smoking behaviour. Guthrie cards are a potentially valuable resource for epidemiological studies and predicting health outcomes.
Children in out of home care in the youth justice system – understanding when they may be more vulnerable to further offending.
Authors: Hodges Helen , Fahey Kevin
Published: August 2022

ObjectivesBy linking external data to that already held in SAIL Databank, a fuller picture of the sometimes-chaotic lives of those in the youth justice system has been compiled. By looking at the impact of changes in circumstances on the likelihood of offending, opportunities for intervention have been identified.

ApproachData from two Welsh youth justice services are used to model how the probability of further offending changes over time for different groups. By linking data from the risk assessment process previously used across England & Wales, to children’s’ social services, education and health records within SAIL Databank, we can for the first-time model their needs and circumstances, and establish temporal precedence in relation to offending. These linked records create an original longitudinal dataset to undertake within- and between- group analysis with a particular focus on understanding the complex relationship between risk and protective factors, and offending for minority groups.

ResultsAdopting an intersectional approach, multi-level modelling has been undertaken to ascertain how the likelihood of further offending changes in response to changes in circumstances (e.g., change of school/placement, starting or finishing treatment for substance misuse or mental health issues) and in response to events linked to the administration of justice (breaches, court appearances and time in custody/remand). In seeking to understand the drivers of recidivism and desistence for different groups of young people, a range of advanced statistical techniques are adopted to most effectively leverage these novel data. Key findings from this research support the need for take up of approaches tailored to the needs and circumstances of the individual.

ConclusionOur ongoing research, in collaboration with key stakeholders, will help improve the outcomes of those young people who have come into conflict with the law. Such research will identify where there is need for timely, appropriate multi-agency support tailored to the needs and circumstances of the individual.
A new data linkage infrastructure.
Authors: Alexis Thomas
Published: August 2022

Our overall objectives are to make data linkage a more feasible and frequently used approach by easing the burden on data controllers posed by data assembly for complex linkage projects. By moving towards data linkage as a more expected and standard approach, policy relevant research into a variety of outcomes can be conducted.

The approach to this has been to create a new secure data linkage infrastructure, and to formulate research projects which will use the linked research data delivered by the infrastructure. A suite of information governance documents have also been developed for the data to be held in the secure infrastructure. Holding the data in a de-identified format on behalf of the data controller in a dedicated area for linkage projects means that the data controller only needs to be involved in the approvals process for the project, and a team of experts who operate the infrastructure can assemble the data.

The results have been that there are several datasets pertaining to Education in Scotland being held within the infrastructure, with more in the pipeline. The data is held in such a way that there are no personal identifiers present in the same location as the variables which are typically of research interest; the stored data is split into three parts and shared across two partner organisations. This separation of functions approach assures data controllers and the public that the data poses extremely minimal privacy risk while in storage, but can be assembled into products which are very useful for approved research in the public interest.

In conclusion, the new methodology for data linkage developed by this approach is hoped to save time, money and lives. A dedicated secure environment for data linkage will ensure the security and privacy of stored data while providing capacity for complex, rich research data to be brought together.
Generation Scotland - Using Electronic Health Records for Research.
Authors: Campbell Archie , Flaig Robin , Porteous David , Sudlow Cathie
Published: August 2022

ObjectivesGeneration Scotland (GS) is a family-based genetic epidemiology study of around 24,000 volunteers from 7000 families recruited across Scotland between 2006 and 2011 with follow-up through record linkage and re-contact.  Broad consent was obtained for linkage to medical records for 98% of the cohort. Recruitment has recommenced in 2022.

ApproachParticipants completed a demographic, health and lifestyle questionnaire, provided biological samples, and underwent detailed clinical assessment. The samples, phenotype and genotype data form a resource with broad consent for health-related research of current and projected public health importance.

This has become a longitudinal dataset by linkage to routine NHS hospital, maternity, lab test, prescriptions, dentistry, mortality, cancer screening, GP data records, Covid-19 testing and vaccinations. Genome-wide association studies (GWAS) have been done on quantitative traits and biomarkers, with DNA methylation data and proteomics available for most of the cohort. Our “CovidLife” surveys collected data on the effects of the pandemic.

ResultsResearchers can use the linked datasets to ascertain prevalent and incident disease cases and controls to test a wide range of research hypotheses. They can also recruit participants to new studies, including recall by genotype, utilising the NHS Scotland Community Health Index (CHI) Register for current contact details.  We have established and validated electronic health record linkage, overcoming technical and governance issues in the process. Using consented data avoids some limitations of safe havens for analysis.

GS is a contributor to major international consortia, with collaborators from many institutions worldwide, both academic and commercial. New recruits are now asked to give consent to linkage to other administrative data, and reuse of samples from routine NHS tests for medical research.

ConclusionGS is now extending linkages to include radiology and health-relevant administrative data (e.g. education); and reopening recruitment to double the cohort size, including teenagers age 12+, collecting new data online and using remote sample collection.

GS resources are available to academic and commercial researchers through a managed access process (www.generationscotland.org).
Variation in multimorbidity prevalence by number of long-term conditions counted: primary care population cross-sectional study.
Authors: MacRae Clare , Mercer Stewart , Guthrie Bruce
Published: August 2022

ObjectivesMultimorbidity poses a major challenge to healthcare systems worldwide, but there is no standardised approach to measuring multimorbidity. Existing studies include a median of 17 (IQR 11-23, range 2-285) long-term conditions (LTCs), making it difficult to compare or replicate research, particularly research examining the prevalence of multimorbidity.

ApproachIn this cross-sectional study of 1,168,620 people from the Clinical Practice Research Datalink, we extracted data on 99 LTCs defined by validated code-sets, including all conditions recommended as core by a recent Delphi study. We examined how the prevalence of multimorbidity defined as ≥2 LTCs, varied when including different numbers of LTCs in the measure. We calculated multimorbidity prevalence when including only the two most prevalent LTCs, repeating the calculation for 3,4,5, through to 99 LTCs, added in order of descending prevalence. Results were stratified by age, sex, and socioeconomic status (SES).

ResultsUsing only the two most prevalent LTCs, 16.8% of people had multimorbidity, compared to 39.3% for 10 LTCs, 42.0% for 25 LTCs, 42.5% for 50 LTCs, 42.6% for 75 LTCs, and 42.6% for all 99 LTCs. Whole population prevalence was essentially stable once 46+ LTCs were included (estimated prevalence change from adding any additional LTC <0.01%) and this was true in all age strata. The absolute difference in estimated prevalence using 99 versus using two LTCs was smallest in younger people (0.3% difference aged 0-4yrs), large in older people (20.4% ≥90yrs), largest in middle age (37.0% 55-59yrs), and was socially patterned, being lowest for people living in the most affluent areas (SES decile 1= 24.2%) and highest in the most deprived areas (SES decile 10=28.9%).

ConclusionEstimates of multimorbidity prevalence vary markedly depending on how many LTCs are counted, with absolute differences in estimated prevalence largest for people in middle-age and with lowest SES. Further research is needed to support implementation of a uniform approach to defining how many conditions to include in multimorbidity measures.
Life-limiting health conditions, treatment and subsequent mortality associated with differences in health service use in people with severe mental illness: an analysis of the Northern Ireland population using administrative data sources.
Authors: McCarter Rachel , Rosato Michael , Leavey Gerry
Published: August 2022

ObjectivesTo examine differences in hospital admissions for people with severe mental illness (SMI), physical health multimorbidity and mortality compared to the general hospital population without SMI.

ApproachThis study linked electronically captured routine administrative data from Northern Ireland (from 2013-2021): this comprised hospital records (including diagnostics codes); community prescribed medications; standard indicators of social deprivation (NIMDM); mortality data (General Register Office); and associated demographic data. The population included for analysis comprised 1,153,447 persons registered with a general practice at 01/01/2010 who subsequently attended a hospital setting. SMI was classified as a binary variable.

ResultsThe population comprised 933,816 hospital patients aged 20plus at 2010, 414,887 (44.4%) males and 518,929 (55.5%) females – with 13,920 (1.5%) recording SMI: 6492 (46.6%) males and 7433 (53.4%) females between 2010 and 2021. Of these 7620 (54.7%) recorded schizophrenia; 4138 (29.7%) bi-polar disorder; and 2162 (15.5%) personality disorder. Those in the most deprived and those in urban areas were more likely to record SMI than their respective least deprived or rural peers (OR=2.38:95%CI=2.39-2.59 and OR=2.04:1.94-2.14). Increasing multimorbidity was associated with increasing SMI diagnosis: after adjustment for age, sex and year of exposure those with 5plus morbid states recorded  OR=2.85(2.44-3.33) and OR=3.74(3.26-4.29) for 2012 and 2020 respectively.  Finally,  in models adjusted for age, sex and multimorbidity, those with SMI were more likely to die than their non-SMI peers: OR=2.09(1.92-2.29) for the 2012 group.

ConclusionPhysical health multimorbidity and mortality increased in SMI compared to the non-SMI diagnosed group. We suggest a range of morbidities associated with SMI can drive excess mortality. This study highlights the importance to examine the extent of underdiagnosis of the causes of mortality in SMI presenting insights into suitable interventions.

AcknowledgementThe authors would like to acknowledge the help provided by the staff of the Honest Broker Service (HBS) within the Business Services Organisation Northern Ireland (BSO). The HBS is funded by BSO and the Department of Health (DoH). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the BSO.
A project designed to examine, for the first time, the health records of adult prisoners in Northern Ireland and their linkage to other available health data: the test case of prisoner post-release mortality risk.
Authors: Cooper Janine , O'Reilly Dermot , Kirk Richard , Kelly Trish , Gibbs Rachel , Donnelly Michael
Published: August 2022

A project designed to examine, for the first time, the health records of adult prisoners in Northern Ireland and their linkage to other available health data: the test case of prisoner post-release mortality risk

ObjectivesThe linkage of routinely collected administrative data for research purposes has the potential to improve knowledge and public benefit. We describe a novel data linkage study between the Northern Ireland (NI) Healthcare in Prisons and Business Services Organisation (BSO). This work is undertaken within the Administrative Data Research Centre-NI (ADRC-NI).

ApproachThis joint project between ADRC-NI Queen’s University Belfast and NI Healthcare in Prisons (South Eastern Health and Social Care Trust) will test linkage of prisoner health records to health data held in the BSO and the potential to generate a population-based cohort for a retrospective analysis of prisoner health (2012-2021) that will attempt to characterise prisoners according to socio-demographic, health and committal factors, compare post-release mortality rates with a reference group from the NI population using indirect standardisation and estimate post-release mortality risk using Cox proportional hazards models.

ResultsUsing novel data-linkages, a dataset will be created to examine the health of prisoners (and former prisoners) in NI. Ethics and governance approvals are in place for this data-linkage.  The linkage will be undertaken via the Honest Broker Service (HBS) in NI and the dataset will be accessed in the safe setting at the BSO. The processes involved, experiences including significant delays or difficulties, and recommendations for future data-linkage studies will be discussed. In addition, a key deliverable of this project will be an assessment of access and linkage capabilities of the prisoner health data, with metadata created and made available to future researchers. In addition, we plan to present preliminary results relating to the test research question.

ConclusionWe will describe the processes involved and first-hand research experience in the development of a novel data-linkage project, in addition we will detail access and linkage capabilities in relation to this new dataset to examine health in prisoners (and former prisoners) in NI.
The Impact of the COVID-19 Pandemic on End-of-Life Prescribing in Ontario Nursing Homes.
Authors: Milani Christina , Webber Colleen , Clarke Anna , Isenberg Sarina , Downar James , Kobewka Daniel , Hsu Amy , Lau Jenny , Sinnarajah Aynharan , Simon Jessica , Boese Kaitlyn , Arya Amit , Roberts Rhiannon , Turcotte Luke , Howard Michelle , Maxwell Colleen , Robert Benoit , Tanuseputro Peter
Published: August 2022

ObjectivesOur preliminary work revealed significant variations in the prescribing of end-of-life symptom management medications in nursing homes prior to the onset of the COVID-19 pandemic. In this study, we sought to explore whether the prescribing of end-of-life medications in nursing homes changed with the onset of the pandemic.

ApproachThis was a retrospective cohort study of nursing home residents age 65+ who died in Ontario, Canada, divided into two time periods based on death date: pre-COVID-19 (January 1st, 2017 – March 17th, 2020) and during COVID-19 (March 18th, 2020 – March 31st, 2021). Using routinely collected health administrative data and our evidence-based end-of-life medications list, we linked resident data to prescription claims to identify whether residents were prescribed these medications in the last 14 days of life. We grouped homes into quintiles according to the proportion of decedents who received ≥1 prescription and examined changes in prescribing before and during COVID-19.

ResultsNursing homes in the lowest prescribing quintile prescribed, on average, 11.5% fewer end-of-life symptom management medications during COVID-19 compared to pre-pandemic. Conversely, homes in the highest quintile prescribed an average of 13.7% more medications during COVID-19. Nursing homes in the lowest quintile had more COVID-19-positive residents (33% of residents) compared to homes in the highest quintile (9% of residents). Additionally, nursing homes in the lowest prescribing quintile spent more time with active COVID-19 outbreaks compared to homes in the highest quintile (mean 72.7 days versus 24.1 days, respectively, standardized difference 0.819).

ConclusionThe COVID-19 pandemic has disproportionately impacted nursing homes across Canada. Our findings suggest that nursing homes with low rates of prescribing of end-of-life medications prior to the pandemic had even lower prescribing rates during the pandemic. These homes were also harder hit by COVID-19 infections and outbreaks.
Multi-sectoral data linkages to explore associations between the built environment and BMI.
Authors: Fry Richard , Griffiths Lucy , Daniels Helen , Mizen Amy , Johnson Rhodri , Bailey Rowena , Rafferty James , Pedrick-Case Rebecca , Stratton Gareth , Pouliou Dora
Published: August 2022

ObjectivesIn Wales almost a quarter of adults and 1 in 8 reception age children are obese. Linked data is a key tool to understanding the role of the built environment on obesity rates and is an important part of developing strategies to combat the obesity epidemic in Wales.

ApproachWe set out to develop an analytical platform for generating evidence on key aspects of the built environment which impact child and adult obesity including; walkability, fast food availability, green space size and qualities, active transport routes and school environments. Utilising the Secure Anonymised Information Linkage (SAIL) Databank We linked multi-sectoral data including routine health data, cohort data, administrative data and linked Geographic Information Systems generated metrics at household and school level. The platform will inform policy makers with and facilitate a  better understanding of associations between a range of social, health and built environment factors.

ResultsWe have created a range of built environment variables including temporally and age varying walkability indices, viewable greenspace, garden and house size, access to services and parks for 1.5 million households. In the first instance, as part of the BEACHES project, this data has been linked to several health datasets including the Child Measurement Programme (CMP, n=188,800) where initial results have shown that associations between garden size and Body Mass Index in children displays a non-linear negative correlation. We have also created follow-up measures for the CMP using routinely collected general practice data which further enables linking 28,389 height and weight measurements. However, potential bias in these follow-up measures is poorly understood with further work being undertaken to assess usability.

ConclusionThe integrated multi-sectoral data platform approach to linking environmental, administrative, health and cohort data aims to develop insights on a range of public health issues. We are working with a range of stakeholders to develop evidence-based policy initiatives to reduce obesity in Wales.
Hwb learning platform: data insights into learning and teaching continuity throughout the COVID-19 pandemic.
Authors: Sandu Alexandra
Published: August 2022

The COVID-19 pandemic has prompted everyone to adapt and find a solution to face-to-face contact, including the educational community, which had to suspend face-to-face teaching in order to prevent the spread of the new virus. Wales, confronted with the need to close schools to avoid the spread of the virus, did so in March 2020, shifting the majority of its delivery online. Indeed, Wales’ Hwb Digital Learning Platform was perfectly poised as a resource to address this unique challenge. Furthermore, because it provides monthly usage statistics across the system, it was a valuable resource for monitoring the transition to online digital teaching and learning and, more importantly, identifying any variations or inequalities in usage. Linking administrative datasets containing information about the schools and Hwb usage (logins) for the academic year 2019/2020, this research aims to explore the continuity of learning and teaching in Wales using statistical methods, by highlighting patterns and changes in the Hwb Learning Platform usage during the lockdown in Wales, with an emphasis on the first school closure owning to the COVID-19 pandemic, as well as the digital learning inequalities that have emerged during the same timeframe.  The findings show that during the lockdown, pupils and staff are more engaged with Hwb, with a peak in April 2020, however, engagement varies significantly not only across school sectors but also between Consortia and within them.
Variation in access rates amongst patients groups in Wales for specialist interventions.
Authors: Davies Gareth , Smith Kendal , Akbari Ashley , Bailey Rowena , Evans Lloyd , John Gareth , Thomas Michael , Lutchman-Singh Kerryn
Published: August 2022

ObjectivesThe Welsh Health Specialised Services Committee (WHSSC) has commissioned a study to assess if there is a standard value-based approach to measure and evaluate the effectiveness of specific interventions, and whether variation exists that may indicate differences in the equity of access to these services provided to patients in Wales.

ApproachUsing anonymised individual-level, population-scale, routinely collected electronic health record (EHR) data held within the Secure Anonymised Information Linkage (SAIL) Databank, we planned to identify amongst the population of Wales any patients experiencing percutaneous coronary intervention (PCI) and Transcatheter Aortic Valve Implantation (TAVI). We would measure associated patient outcomes 2-years before and after the intervention minus a 6-month clearance period on either side by measuring primary care attendances in general practice, and secondary care attendances in hospital, outpatient and emergency department data. To further inform the analysis, linkage to socio-demographic factors, comorbidities and lifestyle factors would be controlled for.

ResultsPreliminary results identified 5,999 PCIs between June 2014 and March 2020. We were able to identify 1,530 as elective and 4,358 as emergency secondary care procedures. Of the elective PCIs, 184 patients had a greater number of elective hospital days pre-PCI, and 382 patients had a greater number of elective hospital days post-PCI. Of the emergency PCIs, 135 patients had a greater number of emergency hospital days pre-PCI, and 893 patients had a greater number of emergency hospital days post-PCI. For TAVI intervention, we identified 74 elective and 49 emergency procedures. 35 of the elective TAVI had greater hospital days pre-intervention, and 17 of the elective TAVI had greater hospital days post-intervention. Primary care costs slightly rose for PCI and slightly reduced for TAVI.

ConclusionWe successfully identified interventions and measured and contrasted outcomes before and after the intervention using the SAIL Databank. For PCI, the elective intervention showed a reduced increase in bed days compared to emergency intervention. These initial findings allow us to plan an expanded analysis to examine other intervention types.
Associations between neighbourhood fast-food environments and hypertension in Canadian adults.
Authors: Stevenson Andrew C. , Colley Rachel C. , Dasgupta Kaberi , Minaker Leia M. , Riva Mylene , Widener Michael J. , Ross Nancy A.
Published: August 2022

ObjectivesHypertension is a leading cause of cardiovascular disease and premature death. Neighbourhoods characterized by a high proportion of fast-food outlets may contribute to hypertension in residents; however, limited research has explored these associations. The objectives of this study were to assess associations between neighbourhood fast-food environments, measured and self-reported hypertension.

ApproachWe used data from 10,700 adults who participated in six cycles of the Canadian Health Measures Survey (CHMS). Measured hypertension was defined as having an average systolic blood pressure (BP) of ≥140, a diastolic BP  ≥90 mm Hg or being on BP lowering medication. Participants were also asked if they had been diagnosed with high BP or if they take BP lowering medication (i.e., self-reported hypertension). We characterized the fast-food environment of each participant’s neighbourhood using the Canadian Food Environment Dataset (Can-FED). We considered the proportion of fast-food outlets relative to fast-food outlets and full-service restaurants as a continuous variable.

ResultsThe mean proportion of fast-food outlets was 23.3% (SD 26.8%). A one standard deviation (SD) increase in the proportion to fast-food outlets was associated with higher odds of measured hypertension in the full sample (OR=1.17, 95% CI 1.05 to 1.31) and in sex-specific models (women: OR=1.14, 95% CI 1.01 to 1.29; and men: OR=1.21, 95% CI 1.03 to 1.43). A one standard deviation (SD) increase in the proportion to fast-food outlets was associated with higher odds of self-reported hypertension in the full sample (OR=1.13, 95% CI 1.02 to 1.24); however, associations were inconclusive in sex-specific models (women: OR=1.11, 95% CI 0.99 to 1.26; and men: OR=1.14, 95% CI 0.99 to 1.33).

ConclusionBy linking neighbourhood food environment measures that were created from an administrative data source (the Statistics Canada Business Register) to individual-level data from the CHMS, we were able to demonstrate that reducing the proportion of fast-food outlets in neighbourhoods may reduce rates of hypertension and support individually targeted interventions.
Privacy Preserving Technologies in US Education.
Authors: O'Hara Amy , Straus Stephanie
Published: August 2022

In the US education sector, data are captured on learners at all stages of the life course with rich, sensitive information on learner demographics, enrollment, achievement, borrowing, and outcomes.  Most data are controlled by institutions, who increasingly want to monitor progress from cradle to career, tracking students from early childhood through primary and secondary schools (K-12), on to degrees granted in postsecondary institutions, including continuing and technical education that grant credentials.  Collecting, storing, and using such data raises privacy concerns.

This presentation describes privacy preserving technologies (PPTs) that have been discussed, tested, implemented – and abandoned – in the education domain.  These include both input and output privacy protection methods ranging from absolute lockdowns of learner data to cryptographically-protected data access and analysis systems.  We describe most familiar and tested PPTs including secure hashing, secure multiparty computation, trusted execution environments, and differential privacy, highlighting actual applications in schools, departments of education, and educational technology nonprofits and companies.

We summarize the factors that limit PPT use and success, including legal, institutional, technical, and cultural barriers and offer recommendations to overcome these barriers.  For example, we find gaps in understanding what PPTs are and what problems they solve; a lack of engagement with data controllers, subjects, and regulators; and a lack of human capital to implement and use PPTs.  There are also significant research and development needs to continue making PPTs less costly in financial, compute, and complexity terms.  Our recommendations suggest topics for continued research into methods that produce disaggregate statistics to analyze equity while protecting privacy, have clear and fair privacy loss budgets, and produce open-source technology, ideally pairing scientists with education experts.
The benefits and challenges of applied, partnered data-intensive research.
Authors: Mcgrail Kim , Clement Fiona , Law Michael
Published: August 2022

ObjectivePopulation data scientists are committed to research that has public value. Much of this research is applied; it is undertaken in partnership with the public, patients, families, as well as policy- and decision-makers. Working directly with policy-makers (who are often also data providers) has advantages, but presents challenges as well.

ApproachWe offer four provocations to stimulate thinking about the relationship between research and the “systems” that research is trying to influence. These provocations include: 1) assessing the implications of “partnership” and who is expected to change or accommodate others’ views, and how this affects researchers’ ability to challenge current practice; 2) challenging the emphasis on short-term over longer-term challenges in systems; 3) moving beyond post-implementation evaluations of policies; and 4) critiquing the current project-specific orientation to assessing return on investment (ROI).

ResultsThe current focus on partnership in applied research tends to suggest that it is researchers who need to be empathetic to the timelines and needs of policy makers. True relationships, however, are bi-directional, and more importantly need to be open to tough conversations and constructive feedback. Further, focusing on priorities of “systems” will emphasize short-term issues. These are important to address, but can crowd out more systemic and structural considerations. This leads to researchers often engaged in post-implementation evaluation where they have had little involvement in policy or intervention design, which may not be evidence-based. Finally, a focus on single-project ROI will tend to undervalue riskier – but also potentially more rewarding – research.

ConclusionIt is important to recognize that valuable research might challenge current thinking and practice, and/or address issues that are not short-term priorities. More early testing of policies before broad implementation will advance evidence. ROI should be viewed as an emergent property rather than an attribute of each individual project.
Using linked administrative data to build a Social Disparities Index for Covid-19 to evaluate the effects of inequalities on pandemic in Brazil.
Authors: Ichihara Maria Yury Travassos , Fiaccone Rosemeire Leovigildo , Da Costa Lilia Carolina Carneiro , De Medeiros Aline Grimberg Pereira , Pinto Junior Elzo Pereira , Da Silva Souza Rafael Felipe , Barreto Mauricio Lima , Ara Anderson , Goes Emmanuelle , Pescarini Julia M , Barreto Marcos Ennes , Gregorio Jaime
Published: August 2022

ObjectiveBrazil is one of the most unequal countries in the world. We aimed to create a Social Disparities Index for Covid-19 (SDI-Covid-19) using linked administrative data to understand the role of inequalities in the COVID-19 pandemic to target social and health policies.

ApproachUsing linked administrative data (2010 Census and National Registry of Health Establishments) we selected municipal indicators for three domains: a) Brazilian Deprivation Index; b) % black/brown/indigenous, % people living  in housing with density >2 person/room, % poor older people as sociodemographic; c) ICU beds  and respirators rates weighted by distance to the health region headquarters as access to health service. A z-score weighted by the population estimated each indicator within the domains. The domains were combined by simple average of the z-scores and classified in quintiles (1-very low to 5-very high). Other methods (TRI, Macharia et al)1 found similar estimative.

ResultsThe SDI-COVID-19 estimated for the three moments of the pandemic (before (T0), first (T1) and second peak (T2)) in Brazil showed that municipalities belonging to the North and Northeast regions had worse SDI-Covid-19 compared to municipalities in the Midwest, Southeast, and South regions of the country. More than 97% of the municipalities in the North and Northeast regions had high and very high SDI in the three estimated periods. There was an increase of 46% in the number of municipalities in the Midwest region with high and very high SDI in T1 and 33% in T2 when compared to T0. Otherwise, we observed an increase of municipalities with very low and low SDI in T1 and T2 in the Southeast and South regions

ConclusionsThe deterministic linkage of administrative data allowed to build the SDI-COVID-19. This index identified the most vulnerable municipalities in the North and Northeast regions in contrast of municipalities in the Southeast and South regions of Brazil with lower inequalities during the pandemic. Findings can target policies to those areas.
A population-based approach to assessing diabetes management during COVID-19: insights from population data in Ontario, Canada.
Authors: Wodchis Walter , Bai Yuqing , Mondor Luke , Hall Ruth
Published: August 2022

ObjectiveDiabetes management requires ongoing monitoring of diabetes care from primary care, specialist care and laboratory testing. COVID-19 led to changes in access to in-person care. The purpose of this research was to assess changes in the management of diabetes during the COVID-19 pandemic using population-linked datasets and population segmentation.

ApproachWe identified over 1.4 Million Ontarians with diabetes (approximately 10% of the population) with valid health insurance as of April 1, 2019 and April 1, 2020. We measured 11 indicators of diabetes management including laboratory testing for HbA1c and LDL (highlighted in this abstract). With screening indicators, we examined changes in the proportion of the population up-to-date with screening at the end of each fiscal year (March 31, 2020 and March 31, 2021) overall and according to population segments created using linked health data from primary care, home care, long term care and hospitals.

ResultsOverall screening rates that required laboratory testing for HbA1c and LDL fell substantially from 54% to 40% and 68% to 59% overall. Comparing across population segments, residents in Long Term Care facilities had the smallest changes in screening rates; individuals with low, medium and high complexity chronic conditions and end-of-life conditions had the largest changes; maternity, cancer, mental health and frail populations were in the middle. Differences according the primary care enrolment models (capitation vs fee-for-service) were relatively minor but patients who were not rostered to a primary care physician had the largest reductions in laboratory screening. Results for all 11 indicators will be shared in the presentation.

ConclusionCOVID-19 was associated with substantial reductions in laboratory-based diabetes screening. Poor diabetes management is one of the strongest risk-factors for adverse outcomes in COVID-19. Rates of diabetes management declined most for at risk patient populations amplifying the need to differentially connect with patients to ensure ongoing care during the pandemic.
The geography of overdose in British Columbia.
Authors: Slaunwhite Amanda , Hu Kevin , Klinkenberg Brian , Gan Wenqi
Published: August 2022

Illicit drug toxicity poisoning (overdose) continues to be a public health emergency in British Columbia (BC) with record high rates of illicit drug toxicity during the COVID-19 pandemic. In 2021, 2224 people died of overdose in BC with some of the highest rates recorded in rural and remote regions. Understanding the geographic variations in overdose mortality risk is necessary to avoid disproportionate risk resulting from service access inequity. Using novel linked administrative health data from the BC Provincial Overdose Cohort we estimated the odds of fatal overdose per event (2015 - 2018) using both conventional logistic regression and Generalized Additive Models (GAM). The results of GAM were mapped to identify spatial-temporal trends in the risk of fatal overdose. We found that the likelihood of fatal overdose was about 20% higher in rural areas than in large urban centers, with some regions reporting odds 50% higher than others. Temporal variations in fatal risk exhibit an increasing trend over the entire province. However, risks in the Interior and Northern BC increased earlier and faster. The results of this study demonstrate the importance of geography to health outcomes and suggest that rural and remote regions may lack harm reduction services to counteract the province-wide increase in illicit drug toxicity death.
Multi-jurisdictional Prostate Cancer Registry Linkage.
Authors: Radbone Christopher , Beckmann Kerri , Roder David , O'Callaghan Michael , Moretti Kim , Fitzgerald Liesel , Buckley Liz
Published: August 2022

ObjectiveThe Prostate Cancer Outcomes Registry for Australian and New Zealand (PCOR-ANZ) aims to monitor population-wide prostate cancer characteristics, treatments, and outcomes. However, long-term follow-up of secondary treatments, disease progression, and side effects is limited. This novel project provides increased utility, enhancing this clinical registry by integrating national and jurisdictional data.

ApproachThe Tasmanian and South Australian jurisdictional registries (PCOR-Tas and PCOR-SA) are being treated as pilots for this nationally relevant data linkage project. Each contains descriptive data on clinical characteristics, primary treatments, survival, and patient-reported outcomes for prostate cancer in their jurisdictions. Data linkages include state-based hospital patient records and central cancer registries, with additional linkages to national data on prescribed medicines, procedures, and deaths; refer Figure 1.

Authorisation by contributing custodians and ethics committees, and funding from the Movember charity, has enabled the more detailed evaluation of patient follow-up after the initial treatment to examine historical trends, health service utilisation, disparities and gaps, and long-term patient outcomes.

ResultsSouth Australian study cohort consists of all men in the SACR (South Australia's central cancer registry) who were diagnosed with prostate cancer [ICD10=C61] as well as any additional men recorded in the PCOR-SA diagnosed from January 2002 to June 2021 (n=25,000).  Men who do not have SA addresses recorded in either source are excluded from the South Australian pilot.   The Tasmanian cohort is younger (established 2015) and smaller (n=2080), but for comparison is linked with the equivalent local and national datasets

The South Australian data linkage is being undertaken by SA NT DataLink, with the Tasmanian linkage undertaken by the Tasmania Data linkage Unit. For both jurisdictions, the national datasets are being linked by the Australian Institute for Health and Welfare (AIHW).

ConclusionSince the Australian health system involves components managed at both the State and Federal levels, multijurisdictional data linkage adds additional complexity to linkage projects. Undertaking this project was not without its challenges, but it demonstrates what can be achieved and the value of enhancing high-quality clinical registry data to address important outcomes in prostate cancer.
Development and validation of a cardiovascular disease risk-prediction model using population health surveys and dietary indices: the Cardiovascular Disease Population Risk Tool – Nutrition (CVDPoRT-Nutrition).
Authors: Jessri Mahsa , Eddeen Anan Bader , Hennessy Deirdre , Bernstein Jodi , Sanmartin Claudia , Bennett Carol , Manuel Douglas
Published: August 2022

ObjectivesOnly a few cardiovascular risk prediction models have been developed based on modifiable exposures and even fewer utilize complex dietary factors. Our objective was to develop and validate the Cardiovascular Disease Population Risk Tool (CVDPoRT)-Nutrition as a tool for estimating 5-year risk of incident cardiovascular disease (CVD) using lifestyle factors and dietary pattern scores.

ApproachThe CVDPoRT developed and validated using the Canadian Community Health Survey (CCHS) linked with health administrative databases was modified to remove limited measures of dietary intakes (i.e., fruit and vegetable, potato, and juice intake frequency) and instead incorporate 5 different dietary pattern scores (i.e., Dietary Guidelines for Americans Adherence Index, Dietary Approaches to Stop Hypertension, Healthy Eating Index, Alternative HEI, and Mediterranean Style Dietary Pattern Score). Outcome data (i.e., CVD events and CVD-related mortality) came from linkage with the Canadian Vital Statistics – Death Database and Discharge Abstract Database. CVDPoRT-Nutrition was tested in 61 policy-relevant subgroups.

ResultsPerformance after adding in each dietary pattern score was similar to the original CVDPoRT (Brier score=2.6%, Harrell’s c-stat=0.87(0.85-0.88) for female models; Brier score=1.6%, Harrell’s c-stat=0.82(0.81-0.84) for male models). The algorithm was calibrated in 53 (female models) and 57 (male models) of 61 policy relevant subgroups. The most important predictors of CVD and CVD-related mortality were age, sex, and smoking.

ConclusionAltering the dietary measures included in the CVDPoRT algorithm did not greatly improve the predictive capacity. The original CVDPoRT can continue to be used for predicting CVD and CVD-related mortality, while CVDPoRT-Nutrition may be used for predicting CVD incidence associated with poor dietary patterns.
Public Engagement and other Essential Requirements for Data Trusts, Data Repositories and Other Data Collaborations.
Authors: Paprica Alison , McGrail Kim , Crichlow Monique , Maillet Donna Curtis , Kesselring Sarah , Pow Conrad , Scarnecchia Thomas , Schull Michael
Published: August 2022

ObjectiveTo test and refine a list of 12 minimum specification essential requirements (min specs) for data trusts, data repositories, and other data collaborations that had been generated and published by a team of 19 Canadians in 2020.

ApproachWe convened an international team of more than 50 people to discuss, test, and refine the 12 min specs. Twenty-three (23) organizations tested the min specs and five analysis sub-teams were formed to identify commonalities and differences in terms of how the min specs are being fulfilled, and ways to improve the min specs. In parallel, we worked with Canada’s CIO Strategy Council to develop the voluntary standard “CAN/CIOSC 100-7 Operating Model for Responsible Data Stewardship” based on the updated min specs.

ResultsThe list of min specs increased from 12 to 15: one for Legal, five for Governance, four for Management, two for Data Users, and three for Stakeholder & Public Engagement. The main changes were the division of requirements that had initially been grouped together under Stakeholder & Public Engagement, one new Governance min spec focused on Indigenous data sovereignty, one new Management min spec focused on data documentation, and multiple changes to make the min specs more precise and directive. The CAN/CIOSC 100-7 standard is progressing through committees and approvals and on track to be finalized by summer 2022. To our knowledge, it will be the first standard that identifies public engagement as a requirement for data trusts, data repositories, or other data collaboratives.

ConclusionsIncluding international team members in the testing and refinement of the min specs led to significant improvements. The process we used may also benefit other teams and organizations who are working to progress from frameworks and principles to practical guidance.