Understanding Inclusion, Diversity, Equity, and Accessibility in a Distributed Data Network: Environmental Scan Within Health Data Research Network Canada
Amy Freier, Laura Bowler, Hannah Owczar
et al.
Inclusion, Diversity, Equity, and Accessibility (IDEA) are critical in addressing systemic bias and advancing equitable data practices. Health Data Research Network Canada (HDRN Canada) initiated an environmental scan to understand IDEA activities within its member organisations and identify opportunities to embed IDEA principles into its operations and data research approaches. The scan aimed to understand: 1) how IDEA activities are organised and sustained across the network; 2) the availability of resources and policies to support IDEA initiatives; and 3) gaps and opportunities for HDRN Canada to standardise and enhance IDEA efforts. A survey was distributed to 19 member organisations between December 2022 and February 2023, covering six domains of inquiry. Data were analysed using descriptive statistics and narrative synthesis, with insights from HDRN Canada's IDEA Team ensuring validity. Eighteen organisations participated, revealing significant variability in IDEA implementation. The findings highlight systemic gaps, including fragmented policies, insufficient training, a reliance on volunteer efforts, and informal mechanisms to ensure equitable use of disaggregated data.
Demography. Population. Vital events
ADRUK Ingest Improvement Task and Finish Group: Smoothing the ingest of data
Jen Bishop, Linus Chirchir, Rachel Coey
et al.
Objectives
Analysts ingest data to TREs for research; extract, process and curate public sector data then made accessible to researchers in safe environments. Although differences surround each dataset, the processes can be made broadly replicable. We will summarise data ingest processes across organisations, identify and share lessons learnt and best practices.
Methods
An ADR UK Task and Finish group with a membership comprising representatives from each of the four UK nations has been established. Membership includes the Scottish Government, the ONS, NISRA, the Honest Broker Service, the Welsh Government, Research Data Scotland, UK Data Service, UK LLC, and eDRIS. The focus of the work will be on the following key areas:
• Areas of good practice,
• Technical issues affecting the data ingest process,
• Capability and skills,
• Opportunities for further improvements,
• Key challenges
• The role of automation.
Results
A final report and recommendations including lessons learnt: ‘Smoothing the ingest of data – Comparison across the 4 UK countries’ will be completed in June 2025, in advance of the ADR UK conference. The work included in this report will be a catalyst for further UK wide collaboration and learning opportunities and the ADR UK conference is the ideal opportunity to disseminate the key findings.
Conclusion
This work and report will inform potential improvements and alignments across the 4 UK nations for data ingest processes. There is an intentional focus on reproducibility, creating efficiencies, and robust quality checks, and building cross-national relationships.
Demography. Population. Vital events
Considerations for selecting and implementing comorbidity indices when using secondary data sources: a guide for health researchers
Boglarka Soos, Tyler Williamson, Kerry McBrien
et al.
Comorbidity measures, such as the Charlson Comorbidity Index, are commonly used in risk adjustment models to account for variability in disease burden. This narrative synthesis describes and critiques available comorbidity indices and offers implementation guidance to researchers based on a critical review of existing literature. First, common comorbidity measures are described. Instruments derived using case definitions, grouping of International Classification of Diseases (ICD) codes, and mapping of dispensed medications to chronic conditions are presented. Comorbidity indices that combine diagnostic and medication data are also introduced. No single option consistently outperforms the rest. Next, important considerations when applying a comorbidity index are described. It is crucial to respect temporality and exclude health events that arise after the study index date. Researchers must also weigh the interpretability of using a weighted sum against the flexibility of using a large set of binary variables. When modelling long-term outcomes, there are benefits to applying a one-year look-back window and augmenting data via linkage. For short-term outcomes, certain chronic conditions may exhibit a protective association; however, not all indices capture these relationships. Implementation of these findings will improve the interpretability of comorbidity measures and the quality of future studies.
Demography. Population. Vital events
A study of policing mental health distress using linked administrative data in Scotland
Susan McVie, Allison Kurpiel
Objectives
This research aims to improve understanding of (1) the frequency and nature of police interactions related to mental health distress and (2) the characteristics of people who have contact with Police Scotland while experiencing mental health distress, thus helping to improve organisational responses to and services for people in distress.
Methods
Using linked administrative datasets from Police Scotland and Public Health Scotland, this research examines the prevalence of one-time and repeated police contacts related to mental health distress over a two-year period. We then descriptively compare the cohort of individuals who have been in contact with the police due to mental health distress to the general Scottish population in terms of their socio-demographic characteristics, health vulnerabilities, and healthcare use.
Results
Existing data indicates that police contact for mental health distress was highly prevalent in Scotland between 2022 and 2024. We expect our study to show that these types of incidents are concentrated among a subset of the population, such that a core group of individuals have multiple contacts. We also expect to find that individuals in contact with the police for reasons related to mental health distress differ from the general Scottish population in some important respects across the domains of socio-demographic traits, health vulnerabilities, and their use of the healthcare system.
Conclusion
This presentation will conclude that public health approaches to policing and cross-agency collaboration with the sector of public health are warranted, and that such efforts should be built around a solid evidence base to aid in the development of better informed, more effective policies.
Demography. Population. Vital events
Risk factors and trajectories of self-harm, neurodevelopmental disorders, and mental health conditions in pupils Educated in Other Than At School (EOTAS) in Wales: a retrospective nationwide electronic cohort study
Olivier Y. Rouquette, Marcos del Pozo Banos, Sze Chim Lee
et al.
Objective and Approach
Pupils ‘Educated in Other Than At School’ (EOTAS) are some of the most vulnerable learners, who, for reasons such as mental health or behavioural difficulties, do not attend a mainstream school. We linked population data from Education Wales (EDUW) between 2010-19 to primary and secondary healthcare records. Individuals included in the EOTAS dataset aged from 7 to 18 years were identified as cases. Controls were pseudo-randomly selected based on equivalent age distribution. We used regression approach to compare characteristics of EOTAS pupils with controls and evaluate their risks of self-harm and mental health conditions before and after being in EOTAS provision.
Results
Being male, high deprivation levels, and previous records childhood maltreatment, self-harm, and mental health conditions resulted in higher odds of being in EOTAS provision. Female in EOTAS provision entered at a later age, and with higher proportion of co-morbidities. Pupils in EOTAS provision had increased incidence of self-harm and mental health conditions from one year after entering EOTAS provision up to 24 years of age than controls with similar characteristics.
Conclusions
An important proportion of pupils in EOTAS provision are from the most deprived areas in Wales, with complex life trajectories, social, emotional, and mental health needs.
Implications
EOTAS provision is not sufficient to attend the social, emotional, and mental health needs of their pupils. Long-term support and a better integration with social care, primary and specialist mental health services is required.
Demography. Population. Vital events
The underground city: the tourism potential of water and sewage infrastructure: the example of Poland
Dębczyńska Klaudia, Piasecki Adam
Industrial tourism and technical facilities are a fast-growing branch of tourism that contains areas of great growth potential. The article deals with one of them. The tourist potential of water and sewage infrastructure in selected Polish cities was analysed and assessed. The study covered 11 cities of diverse socioeconomic potentials around the country. For each city, data were collected that had various levels of detail with regard to visitor numbers, tourist types, facilities made available, events and other special celebrations. For supplementary data, unstructured interviews were also conducted with relevant employees identified in businesses.
Demography. Population. Vital events, Cities. Urban geography
Assessing excess mortality in times of pandemics based on principal component analysis of weekly mortality data—the case of COVID-19
Patrizio Vanella, Ugofilippo Basellini, Berit Lange
Abstract The COVID-19 outbreak has called for renewed attention to the need for sound statistical analyses to monitor mortality patterns and trends over time. Excess mortality has been suggested as the most appropriate indicator to measure the overall burden of the pandemic in terms of mortality. As such, excess mortality has received considerable interest since the outbreak of COVID-19 began. Previous approaches to estimate excess mortality are somewhat limited, as they do not include sufficiently long-term trends, correlations among different demographic and geographic groups, or autocorrelations in the mortality time series. This might lead to biased estimates of excess mortality, as random mortality fluctuations may be misinterpreted as excess mortality. We propose a novel approach that overcomes the named limitations and draws a more realistic picture of excess mortality. Our approach is based on an established forecasting model that is used in demography, namely, the Lee-Carter model. We illustrate our approach by using the weekly age- and sex-specific mortality data for 19 countries and the current COVID-19 pandemic as a case study. Our findings show evidence of considerable excess mortality during 2020 in Europe, which affects different countries, age, and sex groups heterogeneously. Our proposed model can be applied to future pandemics as well as to monitor excess mortality from specific causes of death.
Demography. Population. Vital events
The impact of welfare reform in London - using benefits data to track the effect of government policies on employment outcomes
Giovanni Tonutti
Background
The last three parliamentary terms have marked a period of unprecedented change for the UK welfare system. Alongside reducing public spending, boosting behavioural incentives has represented the overarching drive behind the majority of reforms introduced.
Objectives
Policy in Practice has pooled benefits data across nineteen of thirty-two London boroughs to track changes in living standards and the impact of welfare reforms on low-income Londoners over a period of two years. This paper models and assesses the impact of two flagship welfare reforms on households’ behavioural responses. The policies analysed are the benefit cap and the impact of Universal Credit on selfemployed households.
Methods
The project has gathered a sample of over 570,000 real households. Housing Benefit and Council Tax Support data has been collected from participating local authorities on a monthly basis for two years. The study combines complex policy modelling to forecast the future impact of Universal Credit on the living standards of self-employed households, with a Difference-in-Difference regression to understand the impact of the benefit cap on the employment outcomes of households affected.
Findings
The findings of the analysis indicate a positive impact of the benefit cap on employment outcomes, with a difference in employment rates of 3.5 percentage points in favour of households affected by the cap, compared to the control group. At the same time, the model forecasts significant income losses for self-employed households as the result of the application of a Minimum Income Floor under Universal Credit, with an average income reduction of £341 p/m.
Conclusion
The research highlights the potential of locally held administrative data in systematically tracking the impact of policies and the effectiveness of government interventions. This work fits within the broader mission of Policy in Practice to promote an outcome-based approach to the design and delivery of social policy.
Demography. Population. Vital events
Linking medical licensing examination scores with longitudinal physician practice data using a privacy preserving protocol
Niels Thakkar, Fang Tian, Wendy Yen
et al.
Introduction
Medical education and regulatory bodies do not often share performance data due to privacy concerns. Innovative approaches are needed to facilitate research while preserving security and privacy. To this end, a privacy preserving protocol was employed linking medical examination and regulatory data to examine future physician competence across the career.
Objectives and Approach
This study extends previous work linking de-identified Canadian medical licensing examination data with medical regulatory outcomes to answer the following question: is there a predictive relationship between licensing examination scores and post-licensure practice outcomes? A privacy preserving protocol using a third party organization was employed to link data between two disparate organizations - a medical licensing examination organization (MLE) and a medical regulatory authority (MRA). Multiple years of licensing examinations were linked to thirteen years of regulatory assessment outcomes (2004 – 2016) without identifiable data being shared to either party.
Results
Medical Identification Number for Canada (MINC) was used as a common identifying variable between the two organizations. First, the analytic cohort was created by linking identifying variables of the physicians of interest from both parties, thereby creating a common cohort. The third-party organization then created an encryption key using the common cohort and the MLE examination data. The key was given to the MRA and the encrypted, de-identified examination data was given back to the MLE. Lastly, the MRA data was de-identified, encrypted and transferred to the MLE for analysis. This ensured neither party had access to each other’s encrypted data and the key simultaneously.
Conclusion/Implications
Privacy preserving protocols enhance opportunities for novel research questions and data linkages within and across sectors; here, results from this analysis may enhance the utility of medical licensing exams by providing evidence for secondary uses. Furthermore, it will offer other physician organizations evidence to support physicians across their career trajectory.
Demography. Population. Vital events
Explaining Swedish sibling similarity in fertility: Parental fertility behavior vs. social background
Johan Dahlberg, Martin Kolk
<b>Objective</b>: The aim of this descriptive study is to determine which of the family-specific factors, parental fertility behavior or social background, matters most for the intergenerational transmission of fertility. <b>Methods</b>: Brother and sister correlations in age at first birth and final family size were estimated using multilevel linear regression on data covering 242,976 Swedish men and women born between 1958 and 1967. To explore how much of siblings' similarity in fertility can be explained by parental fertility behavior (age at parenthood and number of children) and social background, we analyzed the decrease in sibling correlation when these family-specific factors were added to the unconditional models. <b>Results</b>: We found that most of siblings' similarity in fertility could not be explained by parental fertility behavior and social background, but that they explained a substantive part of siblings' similarities in age at first birth and a smaller but non-negligible part of siblings' similarities in completed fertility. Parental fertility behavior and social background explain as much (about 36Š) of brothers' and sisters' similarities in age at first birth. Parental fertility behavior matters more than social background for sisters' similarities in completed family size. Parental fertility behavior and social background explain about the same (5Š) for brothers' similarities in completed family size. <b>Contribution</b>: This study contributes to the existing understanding of intergenerational transmission of fertility; both methodologically, by introducing a new method to estimate the impact of specific factors shared by siblings, and by determining how much of siblings' resemblance in fertility can be explained by parental fertility behavior and social background.
Demography. Population. Vital events
How good are electronic health records and death certificates for identifying Alzheimer’s disease and related dementia?
Karen Schliep, Shinyoung Ju, Michael Varner
et al.
Introduction
Effects of early life conditions on Alzheimer’s disease (AD) and related dementia (RD) risk have been hypothesized. However, prospective study is potentially cost prohibitive. Retrospective studies using routinely collected health records in large cohorts may be a feasible way to carry out such research, but diagnostic accuracy should be determined.
Objectives and Approach
We aim to determine accuracy of AD/RD diagnoses in electronic health records (EHR) (inpatient, ambulatory surgery, and Medicare) and death certificates (DC) compared to gold standard. The Cache County Study on Memory in Aging (CACHE, 1995–2008) enrolled 90% of the county’s residents age ≥ 65 years (N=5092). Over the course of 12 years/4 triennial waves of thorough dementia ascertainment, 942 persons (18.5%) were identified with dementia. Prevalence of AD or AD comorbid with other dementia (AD mixed) was 12.8% and for RD alone, 5.7%. We used the Utah Population Database, linking EMR/DCs (1995–2008) to CACHE participants (98% linkage).
Results
The prevalence of AD/AD mixed and RD in EHR/DCs was 12.2% and 35.8%. Among linked CACHE participants diagnosed with AD or AD mixed (n=628), 505 (80%) were captured by EHR/DCs as having some form of dementia (AD, AD mixed, or RD) with 301 (60%) correctly classified as having AD or AD mixed. Among those with RD (n=399), 275 (69%) were captured by EHR/DCs as having some form of dementia, with 163 (60%) correctly classified as having RD. Sensitivity, specificity, positive and negative predictive values, and area under the curve (AUC) were 48%, 93%, 49%, 93%, and 0.70 for AD or AD mixed; and 67%, 67%, 15%, 96%, and 0.67 for RD. Overall dementia agreement between CACHE diagnoses and EHR/DCs was fair (Cohen's κ = 0.34).
Conclusion/Implications
In this will characterized cohort, routinely collected health record diagnoses of AD/AD mixed and RD have only fair correlation with carefully phenotyped diagnoses. Determining additional features of a person’s medical record that may be predictive of AD/RD via formal classification modeling is warranted.
Demography. Population. Vital events
Implicações das conjunturas de crise e de expansão sobre as famílias e a relação família-trabalho1
Lilia Montali
O objetivo deste artigo é discutir implicações das conjunturas de crise econômica e de crescimento sobre a relação família-trabalho, tendo por referência empírica as regiões metropolitanas brasileiras. Considera-se que conjunturas de crise possibilitam mudanças na relação família-trabalho, marcadas pelas relações de gênero. Indaga-se se estas provocam mudanças na divisão sexual do trabalho. O conceito de divisão sexual do trabalho é central neste artigo como transversal à família e ao mercado, por definir os lugares de homens e de mulheres nas esferas da reprodução e produção. Os momentos de baixo crescimento econômico nos anos 1980 e 1990, especialmente a crise na década de 1990 sob a reestruturação produtiva, propiciaram a aceleração de mudanças na inserção dos componentes familiares no mercado de trabalho. Definem-se, desde então, rearranjos familiares de inserção no mercado, com participação mais acentuada da mulher casada nas atividades produtivas e redução da participação dos filhos, tendendo para a quebra do padrão “chefe provedor” e a emergência das famílias com dois provedores, que se consolidam no período de expansão da economia a partir de 2004.
Social Sciences, Demography. Population. Vital events
Divorce risk factors and their variation over time in Spain
Fabrizio Bernardi, Juan-Ignacio Martínez-Pastor
The aim of this article is to analyse the determinants of marriage dissolution in Spain and their variation over time for women married between 1949 and 2006. Data are drawn from the Survey of Fertility, Family and Values of 2006. The article analyses the transition from first marriage to marital dissolution for couples who married in two eras: one prior to the Divorce Law of 1981, during which social and legal barriers to dissolution were many, and one in the period after the law was introduced, during which barriers to marriage dissolution were far fewer. Analyses are conducted using a continuous time event history model. The results indicate some similarities between Spain and other countries, such as the positive relationship between the typical features of unconventional families and marital dissolution, but also some specific differences, such as an increase in the importance of premarital pregnancy and/or not having children. It is also important to stress the declining importance of socio-economic variables, such as education and the labour market situation of women.
Demography. Population. Vital events
Los cambios en la familia vistos desde la demografía; una breve reflexión
Julieta Quilodrán
Este texto contiene una serie de reflexiones producto de años de investigación y docencia en torno a los temas de fecundidad y nupcialidad, entendida esta última en su acepción más amplia de proceso de formación familiar. En primer lugar busca ubicar la evolución de estos dos fenómenos en el contexto de la dinámica demográfica general para luego destacar cuáles son los principales cambios observados en las sociedades desarrolladas y en la región latinoamericana. La transición demográfica que se efectuó durante dos si-glos en los países de Europa, está realizándose en menos de uno en los que la iniciaron entrado el siglo xx. En torno a estos fenómenos -nupcialidad y fecundidad- han ocu-rrido al menos dos hechos inesperados: el descenso de la fecundidad por debajo del nivel de reemplazo y las transformaciones en la formación y la estabilidad de las parejas con-yugales. En el ámbito de las familias, junto con el descenso continuo de la fecundidad de las parejas se ha incrementado la sexualidad fuera del matrimonio, los hijos nacidos al margen de éste, el control natal, la interrupción de uniones, las nuevas nupcias y las uniones informales.El objetivo del artículo es analizar los aspectos de la nupcialidad que están ejerciendo influencia sobre el régimen reproductivo en la era postransicional y que son justamente los que están en el centro de la discusión sobre la segunda transición demográfica.
Human settlements. Communities, Demography. Population. Vital events
Does the recent evolution of Canadian mortality agree with the epidemiologic transition theory?
Robert Choinière, Robert Bourbeau, Marie-Hélène Lussier
After studying the epidemiologic transition's situation in Canada, it is determined that the delimitation of temporal stages within the epidemiologic transition as put forward by Omran (1971, 1998), Olshansky and Ault (1986), Rogers and Hackenberg (1987) and Olshansky et al. (1998) does not suit the Canadian evolution. Many of the researchers' postulates on the epidemiologic transition were not confirmed, which leads us to assert that, since 1958, the epidemiologic transition is best described as an evolution process rather than specific stages confined within time limits.
Demography. Population. Vital events
Mortalidad por causas externas en Medellín, 1999-2006
Doris Cardona Arango
Caracterizar el comportamiento de la mortalidad por causas externas en la ciudad de Medellín, Colombia, entre 1999-2006, según sexo, edad y causa básica de muerte fue el objetivo de este estudio descriptivo longitudinal, con fuente de información secundaria de 22 128 registros de defunción por causas externas. El análisis realizado es univariado y bivariado por sexo, grupos de edad y causa de muerte. Las causas externas registradas en el periodo fueron: 72.9 por ciento por homicidio; 15.3 por ciento, accidente de transporte; 7.3 por ciento, traumatismos; 4.2 por ciento, por suicidio, y por otras causas, 0.4 por ciento. La mayor tasa de mortalidad se presentó en el grupo de edad de 20 a 24 años (27.6 por cien mil habitantes), hecho que merece especial consideración por las implicaciones sociales, familiares y laborales que representa el fallecimiento de una persona en su etapa productiva.
Economic theory. Demography, Demography. Population. Vital events
Patrones y diferencias en la transición escuela- trabajo en Buenos Aires, Lima y la Ciudad de México
Patricio Solís , Marcela Cerrutti, Silvia E. Giorguli
et al.
Los patrones de desigualdad en América Latina se traducen en oportunidades diferentes entre los jóvenes y en la forma y el momento en que se dan las transiciones a la adultez. En este trabajo realizamos un análisis comparativo de dos transiciones, la salida de la escuela y el ingreso al mercado de trabajo, en Buenos Aires, Lima y la Ciudad de México, y documentamos la heterogeneidad de situaciones que viven los jóvenes durante esta doble transición. Se exploran las diferencias por estrato socioeconómico y sexo al interior y entre las ciudades. Si bien las características sociodemográficas y socioeconómicas de los jóvenes se asocian estrechamente a las diferencias intra-ciudad, éstas no son suficientes para dar cuenta de las diferencias entre ciudades. Esto sugiere que los entornos institucionales que regulan el acceso al sistema educativo y al mercado de trabajo contribuyen a explicar las características particulares que asume la transición escuelatrabajo en las tres ciudades.
Social Sciences, Demography. Population. Vital events
Life expectancy and mortality in the context of the process of establishment and development of the European Union.
Marcin Stonawski
Demography. Population. Vital events, Cities. Urban geography
Zbornik Matice srpske za društvene nauke "Simpozijum o demografskom razvoju Vojvodine"
Milka Bubalo
Nema.
Demography. Population. Vital events
Internal migration and technological development
Kari Hietala
Social Sciences, Demography. Population. Vital events