International Journal of Population Data Science最新文献

Introduction: Longitudinal data that tracks student achievement over many years are crucial for understanding children's learning and for guiding effective policies and interventions. Despite being Canada's most populous province, Ontario lacks such large-scale and longitudinal data on student learning. Linking datasets across cohorts requires rigorous linkage protocols, flexible handling of complex cohort structures, methods to validate linked datasets, and viable organizational partnerships. We linked administrative data on early child development and educational achievement and merged two datasets on characteristics of students' neighborhoods and schools. We developed a linkage protocol and validated how the resulting database could be generalized to Ontario's student population.

Methods and analysis: Two main individual-level data sources were linked: 1) the Early Development Instrument (EDI), a school readiness assessment of all Ontario public school kindergartners that is administered in three-year cycles, and 2) Ontario's Educational Quality and Assessment Office's (EQAO) math and reading assessments in grades 3, 6, 9, and 10. To compensate for their lack of a common personal identification number, a deterministic linkage process was developed using several administrative variables. A school-level and a neighborhood-level dataset were also later linked. We examined differences between unlinked and linked cases across several variables.

Results and implications: We successfully linked 50% of the EDI's 374,239 cases, 86,778 of which contained all five datapoints, creating a database tracking achievement for multiple cohorts from kindergarten through grade 10, with covariates for their development, demographics, affect, neighborhoods, and schools. Analyses revealed only negligible differences between linked and unlinked cases across several demographic measures, while small differences were detected across a neighborhood socioeconomic index and some measures of child development. In conclusion, we recommend the filling of key voids in sustainable research capacity by creating representative data through linkage protocols and data verification.

This article describes the linkage methods that will be used in the Decennial Census Digitization and Linkage project (DCDL), which is completing the final four decades of a longitudinal census infrastructure covering the past 170 years of United States history. DCDL is digitizing and creating linkages between nearly a billion records across the 1960 through 1990 U.S. censuses, as well as to already-linked records from the censuses of 1940, 2000, 2010, and 2020. Our main goals in this article are to (1) describe the development of the DCDL and the protocol we will follow to build the linkages between the census files, (2) outline the techniques we will use to evaluate the quality of the links, and (3) show how the assignment and evaluation of these linkages leverages the joint use of routinely collected administrative data and non-routine survey data.

Databases covering all individuals of a population are increasingly used for research and decision-making. The massive size of such databases is often mistaken as a guarantee for valid inferences. However, population data have characteristics that make them challenging to use. Various assumptions on population coverage and data quality are commonly made, including how such data were captured and what types of processing have been applied to them. Furthermore, the full potential of population data can often only be unlocked when such data are linked to other databases. Record linkage often implies subtle technical problems, which are easily missed. We discuss a diverse range of myths and misconceptions relevant for anybody capturing, processing, linking, or analysing population data. Remarkably, many of these myths and misconceptions are due to the social nature of data collections and are therefore missed by purely technical accounts of data processing. Many are also not well documented in scientific publications. We conclude with a set of recommendations for using population data.

Introduction: The patient journey for residents of New South Wales (NSW) Australia with ST-elevation myocardial infarction (STEMI) often involves transfer between hospitals and these can include stays in hospitals in other jurisdictions.

Objective: To estimate the change in enumeration of STEMI hospitalisations and time to subsequent cardiac procedures for NSW residents using cross-jurisdictional linkage of administrative health data.

Methods: Records for NSW residents aged 20 years and over admitted to hospitals in NSW and four adjacent jurisdictions (Australian Capital Territory, Queensland, South Australia, and Victoria) between 1 July 2013 and 30 June 2018 with a principal diagnosis of STEMI were linked with records of the Australian Government Medicare Benefits Schedule (MBS). The number of STEMI hospitalisations, and rates of angiography, percutaneous coronary intervention and coronary artery bypass graft were compared for residents of different local health districts within NSW with and without inclusion of cross-jurisdictional data.

Results: Inclusion of cross-jurisdictional hospital and MBS data increased the enumeration of STEMI hospitalisations for NSW residents by 8% (from 15,420 to 16,659) and procedure rates from 85.6% to 88.2%. For NSW residents who lived adjacent to a jurisdictional border, hospitalisation counts increased by up to 210% and procedure rates by up to 70 percentage points.

Conclusions: Cross-jurisdictional linked hospital data is essential to understand patient journeys of NSW residents who live in border areas and to evaluate adherence to treatment guidelines for STEMI. MBS data are useful where hospital data are not available and for procedures that may be conducted in out-patient settings.

Introduction: Involving public contributors helps researchers to ensure that public views are taken into consideration when designing and planning research, so that it is person-centred and relevant to the public. This paper will consider public involvement in big data research. Inclusion of different communities is needed to ensure everyone's voice is heard. However, there remains limited evidence on how to improve the involvement of seldom-heard communities in big data research.

Objectives: This study aims to understand how South Asians and Polish communities in the UK can be encouraged to participate in public involvement initiatives in big data research.

Methods: Forty interviews were conducted with Polish (n=20) and South Asian (n=20) participants on Zoom. The participants were living in the United Kingdom and had not previously been involved as public contributors. Transcribed interviews were analysed using reflexive thematic analysis.

Results: We identified eight themes. The 'happy to reuse data' theme sets the scene by exploring our participants' views towards big data research and under what circumstances they thought that data could be used. The remaining themes were mapped under the capability-opportunity-motivation-behaviour (COM-B) model, as developed by Michie and colleagues. This allowed us to discuss multiple factors that could influence people's willingness to become public contributors.

Conclusions: Our study is the first to explore how to improve the involvement and engagement of seldom-heard communities in big data research using the COM-B model. The results have the potential to support researchers who want to identify what can influence members of the public to be involved. By using the COM-B model, it is possible to determine what measures could be implemented to better engage these communities.

Introduction: Understanding the level of recording of acute serious events in general practice electronic health records (EHRs) is critical for making decisions about the suitability of general practice datasets to address research questions and requirements for linking general practice EHRs with other datasets.

Objectives: To examine data source agreement of five serious acute events (myocardial infarction, stroke, venous thromboembolism (VTE), pancreatitis and suicide) recorded in general practice EHRs compared with hospital, emergency department (ED) and mortality data.

Methods: Data from 61 general practices routinely contributing data to the MedicineInsight database was linked with New South Wales administrative hospital, ED and mortality data. The study population comprised patients with at least three clinical encounters at participating general practices between 2019 and 2020 and at least one record in hospital, ED or mortality data between 2010 and 2020. Agreement was assessed between MedicineInsight diagnostic algorithms for the five events of interest and coded diagnoses in the administrative data. Dates of concordant events were compared.

Results: The study included 274,420 general practice patients with at least one record in the administrative data between 2010 and 2020. Across the five acute events, specificity and NPV were excellent (>98%) but sensitivity (13%-51%) and PPV (30%-75%) were low. Sensitivity and PPV were highest for VTE (50.9%) and acute pancreatitis (75.2%), respectively. The majority (roughly 70-80%) of true positive cases were recorded in the EHR within 30 days of administrative records.

Conclusion: Large proportions of events identified from administrative data were not detected by diagnostic algorithms applied to general practice EHRs within the specific time period. EHR data extraction and study design only partly explain the low sensitivities/PPVs. Our findings support the use of Australian general practice EHRs linked to hospital, ED and mortality data for robust research on the selected serious acute conditions.

The use of administrative health data for research, monitoring, and quality improvement has proliferated in recent decades, leading to improvements in health across many disease areas and across the life course. However, not all populations are equally visible in administrative health data, and those that are less visible may be excluded from the benefits of associated research. Socially excluded populations - including the homeless, people with substance dependence, people involved in sex work, migrants or asylum seekers, and people with a history of incarceration - are typically characterised by health inequity. Yet people who experience social exclusion are often invisible within routinely collected administrative health data because information on their markers of social exclusion are not routinely recorded by healthcare providers. These circumstances make it difficult to understand the often complex health needs of socially excluded populations, evaluate and improve the quality of health services that they interact with, provide more accessible and appropriate health services, and develop effective and integrated responses to reduce health inequity. In this commentary we discuss how linking data from multiple sectors with administrative health data, often called cross-sectoral data linkage, is a key method for systematically identifying socially excluded populations in administrative health data and addressing other issues related to data quality and representativeness. We discuss how cross-sectoral data linkage can improve the representation of socially excluded populations in research, monitoring, and quality improvement initiatives, which can in turn inform coordinated responses across multiple sectors of service delivery. Finally, we articulate key challenges and potential solutions for advancing the use of cross-sectoral data linkage to improve the health of socially excluded populations, using international examples.

Functional limitations become more prevalent as populations age, emphasising an increasingly urgent need for assistive technology (AT). Critical to meeting this need trajectory is understanding AT access in older ages. Yet few publications examine this from a longitudinal perspective. This review aims to identify and collate what data exist globally, seeking all population-based cohorts and repeated cross-sectional surveys through the Maelstrom Research Catalogue (searched May 10, 2022) and the Disability Data Report (published 2022), respectively. Datasets incorporating functional limitations modules and question(s) dedicated to AT, with a wave of data collection since 2009, were included. Of 81 cohorts and 202 surveys identified, 47 and 62 meet inclusion criteria, respectively. Over 40% of cohorts were drawn from high-income countries which have already experienced significant population ageing. Cohorts often exclude participants based on pre-existing support needs. For surveys, Africa is the most represented region (40%). Globally, 73% of waves were conducted since 2016. 'Use' is the most collected AT access indicator (69% of cohorts and 85% of surveys). Glasses (78%) and hearing aids (77%) are the most represented AT. While gaps in data coverage and representation are significant, collating existing datasets highlights current opportunities for analyses and methods for improving data collection across the sector.