Building transparency into the data journey of mental health case records

April 10, 2025

A team overseeing the Clinical Record Interactive Search (CRIS) mental health case register at the South London and Maudsley NHS Foundation Trust have created an effective environment of transparency around the use of mental health data for research. In a new open-access article published in the International Journal of Population Data Science (IJPDS), the process that the team undertook to achieve transparency throughout the entire data journey, from data collection to data use and through to dissemination of research findings, is described as an exemplar for others to follow.

 

From Raw Data to Research-Ready: A School-to-Work Dataset for Sequence Analysis

March 25, 2025

Understanding how young people transition from school into the workforce is a crucial aspect of research into education and employment and a new dataset, developed by a researcher from the University of Sheffield, now offers an approach to studying these trajectories.

 

Understanding support needs for siblings of children with neurodevelopmental conditions

March 18, 2025

Siblings of children with neurodevelopmental conditions, such as intellectual disability, and autism, have unique life experiences and challenges growing up alongside a family member with a disability. Providing support for their needs can be difficult when they are often out of the spotlight, and are frequently unmet. This issue led researchers from the Kids Research Institute Australia to consider whether using routinely collected data from population registers could help shine light on sibling health and wellbeing.

 

Romanisation Errors in Data Linkage Perpetuate Inequality for Ethnic Minorities

March 11, 2025

In an era where data-driven decisions shape policies and research, it is critical to ensure that data linkage is accurate. However, databases are often designed for Indo-European languages. This means that people’s names are romanised and don’t take into account nuances such as diacritical marks for pronunciation (e.g. Brontè, or Muños), multiple surnames, or non-Latin scripts. This oversight systematically excludes ethnic minorities and migrant populations leading to underrepresentation in research, policy, and service provision, and may introduce biases that disproportionately affect such groups.

 

Canada’s Most Comprehensive HIV Study Updated to Include 28 Years of Data

March 06, 2025

COAST, one of the world's most comprehensive studies of people living with HIV, has been significantly updated in order to provide even deeper insight into the health outcomes of people living with HIV, compared to people without HIV.

 

New computer program helps researchers navigate Brazilian fragmented hospital data

March 03, 2025

A new study from Brazilian researchers, published in the International Journal of Population Data Science (IJPDS), shows a significant advancement in the use of hospital data by developing an algorithm that connects fragmented patient data.

 

The Inequalities of Early Child Development in England

February 27, 2025

Researchers from University College London, the University of Oxford, and the National Endowment for Science, Technology and the Arts (NESTA) have investigated inequalities in the proportion of children that reach expected development at age 2-2½ years in England.

 

New dataset improves linkage of some of the most vulnerable children in Wales

February 19, 2025

A team of researchers from Swansea University have developed a novel algorithm that enhances the availability to link administrative data from some of the most vulnerable children in Wales: those who are looked after (children in care). The algorithm makes use of several readily linkable administrative datasets accessible within the Secure Anonymised Information Linkage (SAIL) Databank, to boost the number of unique identifiers (variables used to link datasets) that are allocated to a vulnerable child or young person.

 

UK LLC brings a step change in integrating UK and interdisciplinary data for longitudinal research

February 17, 2025

The UK Longitudinal Linkage Collaboration (UK LLC) is the national Trusted Research Environment (TRE) for data linkage in longitudinal population research. We support many of the UK’s “consented cohorts” and our infrastructure forms part of the UK’s wonderful tradition of following participants health and wellbeing over lifetimes and generations. Our interdisciplinary partnership has developed a centralised record linkage and analysis platform for the community. This forms an unparalleled data capability, opens new scientific opportunities for the research community and forms a platform for ‘reusable research’ approaches that bring efficiency benefits across our user base.

 

Creation of a New National Database for Research into Child Health, Education and Environment

February 13, 2025

The Kids’ Environment and Health Cohort, published in the International Journal of Population Data Science (IJPDS), is the first comprehensive, nationwide database linking children’s health, education, and environmental information across England. It provides a foundation for future research into understanding how improvements to the local environment in and around children’s homes and schools can support children’s health and education.

 

New insight into the special education support landscape for children with major congenital anomalies in England

February 11, 2025

A new study from a team of researchers at University College London and published in the International Journal of Population Data Science (IJPDS), finds that 4 in 10 children with a major congenital anomaly were identified as needing special educational needs provision during primary school. The proportion differed depending on the type of major congenital anomaly, but almost all children in England with chromosomal major congenital anomalies (such as Down syndrome and Turner syndrome) are identified as needing some form of special educational needs provision in primary school.

 

New automated tracker set to improve data quality and transparency for research

February 06, 2025

Researchers at the Universities of Sheffield and Aberdeen have successfully created a new automated system that defines and tracks specific properties and relationships of the data within the Grampian Data Safe Haven, one of the four Scottish-government accredited regional safe havens in Scotland.

 

How common is violence? It’s hard to tell…

February 04, 2025

Violent crime, including knife crime, is the biggest crime problem of recent years, causing serious and long-lasting harm to victims, friends, families and communities. The UK’s new government has pledged to reduce knife crime by 50% over the next ten years. Understanding how to measure violence accurately is critical to achieving this goal.

 

One in four children in England have a social worker at some point

January 30, 2025

Researchers from University College London have found that a quarter of all children in England receive services from children’s social care before turning 18. This latest research, published in the International Journal of Population Data Science (IJPDS), casts a new light on the extent to which children’s social care intervenes across the population.

 

Improving Transparent Reporting of Algorithm Feasibility Studies

January 28, 2025

There are few experiences more frustrating than trying to understand an instruction manual that is poorly written and unclear. Whether it be furniture assembly, car maintenance, or technology woes, we’ve all been there. It’s no different when it comes to reading population health studies. Lack of transparent reporting can be both frustrating and counterproductive. It leaves the reader unsure if they can trust the results and limits one’s ability to build on previous research, or apply the same methods to their own work. So how does one ensure their publication includes all the necessary details? A team from Health Data Research Network (HDRN) Canada is addressing that head on when it comes to transparent reporting of algorithm feasibility studies.

 

Half of families with children in NE London are living in overcrowded households

January 23, 2025

Data scientists in the Clinical Effectiveness Group (CEG), Queen Mary University of London, have estimated inequalities in household overcrowding in North East London. In some areas, over 70% of families have less than 16.6m2 per person, which is little more than a parking space.

 

Are Persons with Disabilities Left Behind? An innovative database provides disability statistics to find out

December 12, 2024

A new Disability Statistics – Estimates Database (DS-E Database) has been created by an international research team from Colombia, India, South Africa, Switzerland, and the USA. The Disability Data Initiative, or DDI, is an international and interdisciplinary research programme that provides analyses of disability data to help advance the rights of persons with disabilities and sustainable human development for all.

 

New Database Will Help Monitor the Rights of Persons with Disabilities

December 12, 2024

Disability is difficult to define and measure accurately. When a survey directly asks, "Do you have a disability?" respondents may be unclear about what "disability" means. In places where disability is stigmatised, people may be hesitant to answer or may say "no" even if they have disabilities.

However, gathering reliable data on the human rights situation of persons with disabilities is crucial. This data helps track national and international laws, policies, and commitments, including the United Nations (UN) Convention on the Rights of Persons with Disabilities and the Sustainable Development Goals.

 

Linkage of health birth records deepens our understanding of child health inequalities in Scotland

November 27, 2024

A novel data linkage for around 200,000 children born in Scotland, 2009-2013 and published in the International Journal of Population Data Science (IJPDS) has shown large social inequalities in health which start from the moment of birth.

The linkages were carried out across a range of health record types, including prescribing data, hospital admissions, and child health checks, and children were followed up until the age of 6 years. Birth registrations provided information on area deprivation, family structure and parents’ social class.

 

New AI tool offers insights to improve safety for mothers and babies in maternity care

November 20, 2024

Loughborough University researchers have developed an artificial intelligence (AI) tool that identifies the key human factors influencing maternity care outcomes, supporting ongoing efforts to improve safety for mothers and babies.

Developed by AI and data scientist Professor Georgina Cosma and Professor Patrick Waterson, an expert in human factors and complex systems, the new ‘I-SIRch’ tool analyses maternity incident reports to highlight human factors – such as communication, teamwork, and decision-making – that may have influenced care outcomes.

When an adverse maternity incident occurs in England, detailed investigation reports are produced to identify opportunities for learning and enhancing safety.

These reports provide valuable insights into clinical aspects that impacted care, such as health conditions, procedures, and tests. However, identifying the human factors involved is often more challenging, as they tend to be complex and nuanced.

 

The practicalities of using administrative health data for epidemiology research – what you need to know

November 18, 2024

Researchers from the Canadian province of British Columbia have compiled and shared a valuable list of important considerations when using routinely collected health data for epidemiologic research.

Mountains of data are routinely collected every day as part of healthcare services delivery. Information about patient’s interactions with the healthcare system, such as visits to family physicians, hospital stays, and prescription medication dispensing, are recorded in structured databases. Although data collection is primarily for administrative purposes, such as physicians’ compensation and allocating healthcare resources, these health data can also be used for epidemiologic research. Routinely collected administrative health data can provide evidence to inform decision-making and, ultimately, support better public health outcomes, but the process is never simple.

 

Indiana leads the way in linking health data to improve Hoosier maternal and child health

November 11, 2024

Researchers from the Regenstrief Institute and Indiana University (IU) Fairbanks School of Public Health, Indianapolis, USA, are developing an innovative system to create a comprehensive registry of health data on pregnant people and their infants. The infrastructure will enable essential longitudinal surveillance and data linkage required for research into stillbirth, neonatal abstinence syndrome (NAS), and congenital syphilis (CS).

 

New code set to speed up research into substance use harm in Canada

October 17, 2024

Researchers from the Saskatchewan Health Authority and the University of Saskatchewan have teamed up to study the social factors driving substance use harm in Saskatchewan. They used a database called the Canadian Census Health and Environment Cohorts (CanCHEC), which links health data with census information. To help other researchers do similar work in different parts of Canada, they’ve provided a fully annotated STATA code file that can save a lot of time and effort.

 

Citizens provide their views on the use of personal health data

October 14, 2024

Data are generated everywhere, all the time, and can be used to help us understand our world. Health data are particularly powerful tools, with the potential both to help and to stigmatise or marginalise groups. Understanding public views about how health data should be used is critical because the data are about people, they are often collected without direct consent, and trust is essential for effective functioning of health care and other systems.

 

When it comes to perinatal and neonatal health data of premature babies, how accurate is the Canadian Discharge Abstract Database?

October 8, 2024

A new study published in the International Journal of Population Data Science (IJPDS), highlights the accuracy of neonatal and perinatal health data routinely collected by Canada's Discharge Abstract Database (DAD).

DAD is an administrative database that collects comprehensive data on hospitalisations across all Canadian provinces and territories, except Quebec. Due to its linkage with other administrative databases, DAD data can be used for population-based epidemiological research. However, the accuracy of this data, particularly related to preterm births, has not been comprehensively validated.

 

Freely accessible data helps describe wider determinants of health in England

October 2, 2024

In England, how long people live for has stagnated. This may not be considered a serious problem in itself given that people are living longer than ever as a result of significant progress in healthcare since the early twentieth century. The biggest issue we face today is a widening gap between those living long and relatively healthy lives in some areas compared to others, and people experiencing disadvantage and inequality.

 

The UK Needs a National Database for Fetal Alcohol Spectrum Disorder

September 19, 2024

Researchers at the University of Bristol have received broad support for the creation of a national linked database for Fetal Alcohol Spectrum Disorder (FASD) in the UK. To find out if this would be practical and acceptable, the team consulted with a variety of stakeholders, including people with FASD, their families, healthcare workers, policymakers, and researchers through online workshops, video calls, and emails.

 

The influence of deprivation on residential mobility patterns for children in Wales

September 17, 2024

A new study examining residential mobility in children and young people has found that children living in disadvantaged neighbourhoods are experiencing higher frequencies of house moves, 75% of which were to areas with similar or higher levels of deprivation. These results suggest that those living in deprived areas face a cycle of poverty that is difficult to escape and sheds light on the socio-economic challenges that affect children growing up in Wales.

 

New Partnership Unifies Birth Data for Better UK-Wide Health Insights

September 12, 2024

The Mother and Infant Research Electronic Data Analysis (MIREDA) partnership is revolutionising child health research by harmonising regional United Kingdom (UK) birth datasets into a single all UK Birth Cohort.

This initiative will enable researchers to directly compare data from different regions, offering valuable insights into maternal and child health across the UK. By integrating diverse regional data, the dataset can examine interventions in different regions to find out what works best for optimum maternal and infant health, and how best to support child development from birth through primary school.

 

GP records used to better understand maternity care services for asylum seekers in Wales

September 11, 2024

Swansea University is using a new method to identify the health records of people seeking sanctuary in the UK. Working with the SAIL (Secure Anonymised Information Linkage) Databank, a repository of routine health data, they are able to access fully anonymised health records. By examining General Practice data, it is possible to identify all the patients who were recorded in the system as refugees or asylum seekers by their GP. These data can then be linked to maternal and infant health records to compare the use of maternity care services and health outcomes between mothers identified as refugees or asylum seekers and UK-born mothers. By doing so, it is possible to determine whether there are any significant differences between these groups.

 

During Covid the world discovered the real value of data

July 22, 2024

A new study published in the International Journal of Population Data Science (IJPDS) highlights the growing role of government health analytics since the Covid-19 global outbreak.

Health data are routinely collected by governments and other service organisations to support decision-making. Demand for health data and analytics by researchers, businesses, and the public has increased in recent years, accelerated by the Covid-19 pandemic. In New Brunswick, Canada, teams in the provincial health ministry analyse various types of data to inform health system assessments and improvements. However, until now, little was known about the public service personnel dedicated to the underlying data and information systems.

 

Improving maternal and child health starts with good data

July 18, 2024

Public Health Scotland (PHS) has recently established a new national dataset providing information on all recognised pregnancies to women in Scotland from 2000 onwards: the Scottish Linked Pregnancy and Baby Dataset (SLiPBD). SLiPBD will enable ongoing surveillance and research on the health of pregnant women and babies. This in turn will inform policy and service development, helping to improve outcomes for women and babies.

 

Worldwide one in five pregnant women are living with obesity and this looks set to rise.

July 15, 2024

How big a problem is obesity in pregnancy? Three researchers from Queen’s University Belfast, in Northern Ireland undertook a research study to find out. They found that across the world, one in five pregnant women are living with obesity (20%), and this rate is increasing over time. By 2030 it is likely that close to one in four women will enter pregnancy with obesity (23%).

 

Newborns of mothers with disabilities more likely to be discharged into care

July 4, 2024

Women with disabilities may face more systemic challenges and assumptions about their parenting than other mothers. For example, there is evidence to suggest that mothers with intellectual/developmental disabilities are overrepresented in children’s social services, and women with other types of disabilities, including sensory and physical disabilities, report experiencing judgement and discrimination from health care providers related to their parenting skills.

 

Synthetic Identifiers for Data Linkage Evaluations: A New Privacy-Focused Method

July 1, 2024

Researchers from University College London have developed and demonstrated a new method for creating synthetic identifier datasets to assist the development and evaluation of data linkage methods. They wanted to see if replicating the relationships between personal attributes and identifiers would improve the usefulness of the synthetic data for assessing linkage errors.

 

New dataset with potential to improve health services for children under 5.

June 20, 2024

A dataset that lets researchers explore health visiting services for children under 5 years old has been tested by a team at University College London for the first time. They found that the dataset contains just under half of all mandated health visiting contacts that families across England received between April 2016 and March 2020. Even though the dataset does not include all contacts, it is a promising start to help understand and improve health services for children under 5.

 

Using data linkage to understand the health needs of mothers involved in family court proceedings to place a child into care

June 17, 2024

New research from UCL and published in the International Journal of Population Data Science (IJPDS), shows that 1 in 77 (1.3%) women who start a family are involved in a family court case where social services apply to place one or more of their children into state care.

A team of researchers led by Professor Ruth Gilbert, looked into the health and social factors that increase the risk of involvement in family court proceedings by creating a database that linked anonymised administrative family court records for mothers involved in care proceedings, to anonymised NHS England hospital records.

 

Understanding effects of sibling and only-child dynamics on health and development using national linked data.

June 06, 2024

Researchers from the ECHILD (Education and Child Health Insights from Linked Data) team at University College London have developed a cohort of mothers and their children, which includes 4 million clusters of mothers and only-children, and 4 million clusters of mothers and children with siblings. Being able to analyse data like this, within families, gives us an opportunity to delve more deeply into the part that family dynamics have to play on child health and development.

 

A novel data linkage provides insights on who is claiming benefits and accessing secondary mental health services across South-East London boroughs.

May 23, 2024

The Department for Work and Pensions (DWP) reported that spending on benefits for those with disabilities and long-term health conditions was at its highest (£30 billion) in 2019/20, with predictions that it could increase to £31-40 billion by 2025/26. There have been significant changes to the UK benefit system in the past decade, most notably the introduction of universal credit (UC) that replaced 6 older benefits known as legacy benefits, to make claiming process simpler. However, evidence shows that these changes have caused distress for people with mental health disorders.

 

Integrating Census Data Using Linked Data and Ontologies

May 20, 2024

Researchers from the University of Toronto’s Urban Data Research Centre have published a paper describing a new approach to representing the definitions of census attributes e.g. education, age, sex etc., using ontologies and linked data. It enables the integration of census data with other sources of data represented as linked data. The result is a richer representation of urban data to support evidence-based decision-making.

 

Health visiting in England - still alive and kicking?

May 13, 2024

Researchers from University College London have been exploring the delivery of health visiting services to children in England. The results are mostly positive. They found that health visiting teams are reaching nearly all babies and most children under five with face-to-face contact. In addition, they are providing a high number of additional visits to children in many local authorities, although the duration and location of visits varied across the country. However, a significant minority of children are still being missed by health visiting services: for example in some areas, up to 10% of families were not receiving the new birth visit and up to 82% were not receiving their 6-8 week review.

 

Applying control charts – why a one size fits all approach isn’t the way to go.

April 30, 2024

Trend control charts are a potentially useful tool for developing chronic disease surveillance methods. They can tell us when and where there may be changes in the quality of administrative health data for identifying disease cases. But, in order to make them even more efficient, disease-specific calibrated control limits are likely needed – and to do that, understanding the disease of interest is key.

 

Three uses of health data that 20 experienced public and patient advisors supported, and two uses that were unanimously opposed

April 17, 2024

Multiple research studies have analysed how patients and members of the public perceive various uses of health data. This research into “health data social licence” consistently shows that many patients and members of the public want health data to be used for public benefit, but only if concerns like those related to privacy, cybersecurity, commercial motives, and misuse of data are addressed.

 

Respiratory infections data platform – a rich data source guiding prevention strategies

April 11, 2024

Researchers at the Telethon Kids Institute have constructed a WA Respiratory Infections Linked Data Platform – using hundreds of thousands of birth records across Western Australia – to conduct research on respiratory syncytial virus (RSV) and other respiratory infections and guide prevention programs.

RSV is the leading cause of pneumonia in babies and children with Australian reports estimating health care costs between $59 million to $121 million each year.

 

New standardised method for grouping patient records into ‘households’ will enable more effective research into the factors that shape our health

April 09, 2024

Data scientists at Queen Mary University of London have published a fast, standardised method to help health researchers group occupants of the same household at any point in time. The method uses Unique Property Reference Numbers (UPRNs) in pseudonymised health records to create household units of analysis. The availability of a transparent, robust method for doing this opens new possibilities for studying the wider determinants of health quickly and frequently.

 

University of Calgary's Centre for Health Informatics Leading the Way in Transforming Healthcare

March 21, 2024

The Centre for Health Informatics (CHI) at the University of Calgary is a leading academic unit in the field of health informatics. Through its innovative research, education programs, and collaborative partnerships, CHI is driving positive change in healthcare delivery and contributing to the advancement of the field globally.

 

Enhancing inclusion and societal participation in data governance in Brazil

March 13, 2024

The Centre for Data and Knowledge Integration for Health (CIDACS) was created to link socioeconomic and health data in an effort to investigate social determinants of health in Brazil. Our data governance practices conform with safe data linkage principles and guidelines to support data acquisition, management and use for public health research applications.

 

Sex, geographic location and socio-economic status could affect colorectal cancer outcomes

February 20, 2024

Researchers from the University of Edinburgh have been exploring mortality rates in patients diagnosed with colorectal cancer in Scotland. Using a dataset that includes everyone diagnosed with colorectal cancer between 2006 and 2018, they have found some surprising results in terms of which characteristics are associated with mortality, beyond the usual characteristics like tumour stage at diagnosis, age and level of disability.

 

To share or not to share? How local health systems in England can accelerate cross-sectoral data linkage to improve planning and decision-making.

February 07, 2024

A collaboration between researchers from Imperial College London and Kent County Council reveals challenges and barriers in sharing data for cross-sectoral linkage related to data infrastructure, data protection rules and lack of regular patient and public engagement.

 

Are children living in PFAS-contaminated towns experiencing poorer developmental outcomes?

February 05, 2024

A new study in Australia, published in the International Journal of Population Data Science (IJPDS), did not find enough evidence to link PFAS (per and poly fluoroalkyl substances) exposure to poorer child development. However, the health effects of PFAS continue to be an active area of research in Australia and internationally.

 

Unlocking Insights with VICHTA: Repurposing trial data to increase care home knowledge

January 15, 2024

Amidst global population aging, the demand for residential long-term care is increasing. In the United Kingdom, an estimated 430,000 older adults reside in care homes. Homes hold a wealth of information about each resident; however, this is often collected without a systematic approach, and shielded by commercial sensitivity and mistrust in data sharing. An efficient means for secondary research is to repurpose data collected from previous research undertaken in the homes.

 

How to examine the quality of linked survey and administrative data

January 09, 2024

With growing popularity of linking survey results to administrative records, a team at University College London (UCL) now provides guidance to evaluate the quality of such linked data. Their newly published methods empower researchers while protecting privacy.

Approved researchers increasingly analyse participant survey data connected to corresponding administrative datasets like hospital records. These linked data enable deeper insights. However, although the quality of the linkage can be assessed using different approaches, many of these approaches are not possible where there is a separation of processes for linkage and analysis to help preserve privacy.

 

Novel Scottish dataset on maltreated children now able to be linked with health data.

December 14, 2023

Scotland has created a new dataset that combines information on children who have experienced abuse or neglect. The Edinburgh Child Protection dataset comprises all children referred to child protection paediatric services in Edinburgh City over a 20 year period and offers an unprecedented opportunity for research on child maltreatment. This equates to around 27,000 referrals for c.16,000 children (as children could receive multiple referrals).

 

How can we be sure that machine learning models don’t inadvertently breach privacy?

December 14, 2023

Machine learning (ML) is a computing technique to find new insights into data. Increasingly these models are built using sensitive personal data, and so we need to be sure no individual data could be accidentally released when deploying these models. A consortium of universities, funded by DARE UK and led by the University of Dundee, developed mathematical tools to provide measures of disclosure risk and high-level guidelines for decision-makers. However, this has highlighted that there are many unresolved issues in this field, including how the results of such risk assessment should be interpreted.

 

Delving into the world of methods of de-identification for free-text data

December 12, 2023

If you are wondering which is the best way to go about de-identifying free text data, specifically free text data containing personal health information then you have found just the article to help you decide.

A review conducted by researchers from the Manitoba Centre for Health Policy at the University of Manitoba, Canada, has identified and categorised de-identification methods for free text data, how systems have evolved over time and highlights which hybrid approaches are the most promising for future research.

 

Artificially generated synthetic data help speed up research with health data from multiple jurisdictions

November 27, 2023

Exploration of the uses and accuracy of synthetic data abound within health research with the aim of improving data privacy and confidentiality. In a new Canadian study, synthetic data has again produced positive results during testing of a modified simulator that captures prescription drug records.

In the new study, ‘Generating synthetic data from administrative health records for drug safety and effectiveness studies’ published in the International Journal of Population Data Science (IJPDS), it was found that the attributes of the synthetic data generated by the modified simulator were similar to real-world administrative health record data, reflecting the modifications the team incorporated into the simulator.

 

Bridging the Gap to Unite Trusted Research Environments

November 09, 2023

Trusted Research Environments (TREs) are like safe havens for health data, ensuring that each one of us will be able to contribute anonymously to valuable research insights generated from day to day interactions with health care systems. TREs protect our information by offering both legal foundations and technology tools. But there's a catch: not all data is in one place, different data flows into different TREs. For example, if you move from Wales to England, there will most likely be an unknown gap in your electronic health records which is the data you contribute to research. This can be more critical in cases where people develop or suffer from a rare condition and are interested in getting timely insight into diagnosis or treatment for their conditions.

 

New collaborative method for producing combined synthetic datasets

October 31, 2023

Interest in Federated Learning, as a collaborative way to train AI or machine learning models without anyone else seeing or accessing your private data, has increased rapidly in recent years. The potential to use federated learning to allow multiple organisations to create combined synthetic datasets is explored by researchers from the University of Manchester. Creating these combined synthetic datasets could, for instance, allow multiple hospitals to work together to create one large synthetic patient dataset - potentially providing a more complete picture than each individual hospital dataset could alone, and produced without sharing any of their own private patient data.

 

How health data for research is governed in the Canadian province of Alberta with a centralised health system

October 26, 2023

If you have ever wondered how researchers access and manage health data in the province of Alberta – a single Canadian province with a centralised health system – a recent article published in the International Journal of Population Data Science (IJPDS) by a research team at the University of Calgary and University of Alberta is here to provide you with all the information on the well-established and streamlined processes that facilitate timely data access.

 

New database of 38 million older US adults aims to answer longstanding questions on COVID-19 vaccines

October 18, 2023

Over 58 million older adults globally have received at least one dose of a COVID-19 vaccine. COVID-19 vaccines, including boosters, are safe and effective overall. However, older adults, especially those with advanced dementia and other complex health conditions, are generally excluded from clinical trials and other studies of COVID-19 vaccines.

 

Accurate forecast modelling is an important tool for health care planning

October 16, 2023

Wait times for surgeries are a major barrier to health care and can have lasting impacts on patients including increased anxiety and pain, and worsened health status and recovery time. In Manitoba, Canada the health care system faces particularly high wait times for orthopedic and ophthalmological surgeries and investigations.

 

Unlocking the potential of data research through standardised access agreements

October 9, 2023

In the pursuit of more efficient and coordinated research for public benefit, the data research community is increasingly turning to Trusted Research Environments (TREs) – secure computing spaces that grant authorised researchers access to vital data. These environments operate under the umbrella of Data Access Agreements (DAAs), which establish the terms of data utilisation within these secure confines. However, such agreements are often unclear and complex, and this can lead to delays to research initiatives while the contract is reviewed.

 

Four Questions to Guide Decision-Making for Data Sharing and Integration

October 4, 2023

The Four Questions - Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)? should be considered within an established data governance framework and alongside core partners to determine whether and how to move forward when building an Integrated Data System (IDS) and also at each stage of a specific data project.

 

Novel Algorithm to Accurately Identify Bleeding in Electronic Health Records

October 2, 2023

Researchers from Bayer AG, Integrated Evidence Generation (IEG), have developed a novel algorithm to identify two widely used clinical trial definitions of bleeding events in electronic health records, allowing for the comparison of clinical trials and observational studies results.

 

Overcoming ethical and legal obstacles to data linkage in health research

September 25, 2023

In recent years, using, re-using, linking, sharing, and analysing health and genomic data has occurred on an unprecedented scale, and is expected to only keep expanding. Researchers can maximise the use of existing data collections effectively by using data linkage techniques. But, optimising the use of data poses challenges on ethical and legal levels, and raises questions and concerns regarding privacy and data protection.

 

How to know that your data are safe and being used for purposes that you agree with

September 20, 2023

As the volume and variety of data about people has increased, so too has the number of ideas about how those data might be used. Studies around the world have shown that many people want their data to be used for public benefit, but also that their support is conditional, and only given when risks like those related to privacy and commercial motives are addressed.

For organizations that are good and responsible stewards of data, the challenge can be finding ways to communicate their trustworthiness without providing an overwhelming amount of technical and legal details.

 

What are the driving factors behind children’s emergency department visits for mental health and substance use concerns?

August 14, 2023

Growing rates of visits to emergency departments for child mental health and substance use are occurring internationally, with reported increases ranging from 6-10% per year over the last decade. Yet, we lack the knowledge of the particular characteristics that distinguish between children presenting to emergency departments for mental health and substance use concerns and those who do not. This missing information is greatly needed to support evidence informed clinical and policy decision-making to improve children’s mental health and access to services.

 

Waterbirth research conducted by adapting local maternity information systems

August 7, 2023

The POOL study is a large UK based cohort study exploring the safety of waterbirth for mothers and babies. Although the use of water immersion during labour for pain relief is a popular choice and offered in most UK maternity units, clinical questions remain as to whether giving birth in water is as safe as leaving the water prior to birth. As the clinical outcomes of interest are uncommon a large study was required. To answer all study objectives, the POOL study plans to use records relating to over 800,000 births that occurred between January 2015 and June 2022.

 

How to involve under-represented communities in research

July 17, 2023

We all agree that getting members of the public involved in Population Data Science research is fundamental to successful outcomes, but just how can the research community encourage under-represented communities to get involved?

In a new study led by Piotr Teodorowski from the University of Liverpool and published in the International Journal of Population Data Science (IJPDS), members from the Polish and South Asian communities helped shape our understanding of the barriers to their involvement in large population data research activities.

 

New registry aims to improve care for newborns

June 20, 2023

In Canada, there is a lack of specific health data when it comes to ethnic communities. The country is rich in ethnic diversity, yet the lack of data from these communities leads to ethnicity-related inequalities in healthcare systems, which can be quite problematic.

The importance of understanding why this is the case and how best to assist and encourage people from ethnic communities to contribute to research using administrative health data, has led a research team from Calgary to engage with community members in an attempt to find a mutually agreeable way forward.

 

New registry aims to improve care for newborns

June 15, 2023

Globally, around 10% of newborns arrive either early (before 37 weeks gestation), or sick. This drives lifelong legacies of disability and developmental delay. Our ability to prevent this from happening and to provide better care are vital.

 

Stopping healthcare from falling behind in the digital age

June 13, 2023

As a very timely response to the European Commission’s communication on the importance of the European Health Data Space, authors from several EEA member states came together to discuss the pros and cons of record linkage as a vital key player for the COVID-19 syndemic. The result was a call for legal harmonization to overcome research challenges, and, to initiate discussions across the scientific community, they published a commentary in the International Journal of Population Data Science (IJPDS).

 

Stopping healthcare from falling behind in the digital age

June 12, 2023

Researchers at the National Centre for Healthy Ageing in Melbourne, Australia, are developing a unique research data platform called the Healthy Ageing Data Platform. It brings together data from routinely collected Electronic Health Records from across various healthcare sectors within a geographic region which is being used to enhance research and improve patient care.

 

Cross-sectoral data linkage can uncover and address health inequities among disadvantaged populations. What are the key challenges and opportunities to expanding its use?

June 7, 2023

The use of administrative health data for research, health monitoring, and quality improvement purposes has proliferated in recent decades. Administrative health data include records of contact with hospitals, emergency departments, primary care, pharmacies, psychiatric services, and more. These data provide a powerful basis to generate information on the health of populations, permitting a detailed understanding of health disparities, the resources required to improve them, and the consequences of inaction.

However, not all populations have equally benefitted from the use of these data to understand and improve health outcomes.

 

How Public Engagement gave a voice to the most vulnerable groups in Brazil during Covid-19

June 6, 2023

A research team from the Centre for Data and Knowledge Integration for Health (CIDACS) in Bahia, Brazil have created the Social Disparities Index for Covid-19 to measure and assess the effects of health inequalities of the most vulnerable people in Brazil during the Covid-19 pandemic. But fundamental to the success of the Index was a carefully planned programme of Public Engagement.

Vital to the project’s success was the inclusion of people from community groups who were working with black populations, favelas, black women, food insecurity, and human rights in particular – people directly affected by the deepening social inequality dynamics in the country. Policymakers, health sector managers, and members of the National Council of Health Secretaries (Conass) were also involved in order to stimulate ideas for improving IDS-Covid-19 information.

 

Viking Genes, a worldwide study of volunteers with ancestry from the Northern Isles of Scotland

May 16, 2023

The isolated populations of Orkney and Shetland are genetically distinct from mainland populations, with the highest degree of kinship and Norse blood in the British Isles and Ireland, and a unique cultural heritage. These populations are ideal for studying rarer genetic changes due to genetic drift, the large number of relatives, and availability of family tree information.

VIKING II is one of four studies in the Viking Genes project at the MRC Human Genetics Unit and the Usher Institute, University of Edinburgh. It is a global observational cohort of over 4,000 volunteers who share this distinct ancestry from the Northern Isles of Scotland. VIKING II was established with the aim of identifying genetic changes that influence risks of diseases such as heart disease, eye disease, stroke, cancer and others.

 

Associations between neighbourhood demographics and the effects of online learning in kindergarten

May 11, 2023

A team of researchers have conducted a thorough evaluation of the Family Nurse Partnership (FNP) program in England and Scotland, in an attempt to assess the many challenges of using routinely collected administrative data for evaluating policies and programmes.

Their evaluation has produced a number of important suggestions that that will be extremely useful to other researchers who are also attempting to navigate the challenges and biases that could otherwise compromise their findings.

 

Associations between neighbourhood demographics and the effects of online learning in kindergarten

April 04, 2023

During the first wave of the COVID-19 pandemic hundreds of schools across Canada closed their doors to students in favour of distance online learning. This generated a wave of research looking into the effects that home learning has had on children during this period. However, for the first time, researchers from the Offord Centre for Child Studies at McMaster University in Ontario have delved deep into the connections between the sociodemographics of children in particular school catchment areas in Ontario, barriers to distance learning, and concerns about the eventual return to the classroom as perceived by teachers, using data linkage techniques from two very different sources.

 

Global inequities of accessing assistive products for aging and disabled populations

March 16, 2023

A person’s access to assistive products such as hearing aids, wheelchairs, and glasses, is an essential part of their ability to age in a healthy way. But, according to the World Health Organization, a staggering 90% of people who need assistive products worldwide, do not have access to them. In many instances access is limited or simply non-existent. This is often due to assistive products being too expensive, demand outweighing supply, not always being suitable to use in different environments, or even the lack of availability of trained providers. In such circumstances, people are more likely to age ‘unhealthily’ if they do not have access to assistive products that are designed to support their day to day functioning and independence.

 

How local Trusted Research Environments can shape national data policies to streamline access to UK health data

March 16, 2023

The Ben Goldacre review, Better, Broader, Safer: Using Health Data for Research and Analysis, commissioned by the Secretary of State for Health and Social Care and published in April 2022, proposed a national data strategy to establish and codify large-scale or national Trusted Research Environments (TREs). Trusted Research Environments act as gatekeepers to researchers wanting to use routinely collected health data, allowing approved researchers to access, process, link and analyse health data, derived from NHS patient records, safely and securely.

 

Learning Health Systems help reduce inequities in healthcare

February 22, 2023

Throughout the COVID-19 pandemic, governments and healthcare institutions used rate of infection and death rates to help identify how best to tackle the pandemic and distribute services. But this approach was not entirely equitable, particularly amongst marginalised communities, and it shone a spotlight on healthcare disparities that already exist. Governments had no option but to confirm the fact that we need to find more equitable pandemic support services.

 

How Might New Data Help Uncover Pathways to Student Achievement in Ontario?

February 2, 2023

If you observe a kindergarten classroom, its games, songs, and stories might seem to be just for fun. But play-based learning can help children develop skills and knowledge before elementary school and provide an essential foundation for high school and beyond.

What if we could discover key features of early child development that correlate with strong learning pathways through high school? Educators could use that information to ensure all students, especially those who are struggling in school, are getting the supports they need, when they need them. Research tells us that the earlier we provide individualized supports to students, the more positive their effects.

 

Why misconceptions about population data can lead to bad outcomes

January 31, 2023

Data about people of whole populations are often seen as the new oil of the Big data age. They allow companies to recommend products tailored to you and help governments gain insight into their citizens’ needs. Such population data have also been highly valuable to better understand the spread and the effects of the COVID pandemic. There are, however, various misconceptions about population data that can lead to researchers making mistakes when processing, linking, and analysing such data, potentially resulting in poor real-world decisions.

 

Researchers in Kent, Surrey and Sussex consult with citizens about “unlocking health data”

January 30, 2023

In the South East England region of Kent, Surrey and Sussex (KSS), parts of the NHS are being joined together for the first time and are working on using NHS patient data to help understand the health needs of their populations. The NHS is also working closely with the county and city councils, which employ teams working in public health. These teams hope to use the joined-up NHS patient data to understand which local communities are at risk of poorer health, so they can design strategies to meet communities’ needs.

 

Unravelling hospital resource use of cancer patients

January 16, 2023

It is already known from recent research that hospital based end of life care of cancer patients is particularly resource intense with a steep cost-increase in the final three months of life. But how this breaks down was, until now, not clearly understood.

 

Encrypted medical data in research: A new privacy-preserving approach in data linkage

November 23, 2022

A new data linkage software shows the feasibility and accuracy of linking research databases without revealing any personal health information. The ‘Brain-CODE Link’ software was used to combine a large dataset of routinely collected information with a smaller dataset of primary collected data. This privacy-preserving record linkage comprised the largest data linkage performed with the Brain-CODE Link software to date.

 

Research Shows How People Experiencing Overdose Engage With Healthcare Services in Canada

October 26, 2022

Overdoses related to illicit opioids and other substances are a significant public health crisis in Canada. In order to design effective public health interventions and reduce barriers to care, it is important to understand how people who experience overdose connect with the healthcare system. New research has examined how people who experience overdose in one province in Canada access a range of healthcare services, including ambulance services, emergency departments, and hospitals, with details published in the International Journal of Population Data Science (IJPDS).

 

How epidemiology and AI can help with planning and selecting decision support tools

October 19, 2022

Researchers from Western University, Canada have demonstrated the value of using artificial intelligence (AI) methods for descriptive epidemiology when developing data-driven decision support tools in health care.

Data-driven decision support tools are technology that provide information to help people make decisions. These tools use data from various sources to identify gaps, patterns or trends, or to make prediction of future events. Although becoming increasingly common within health care, their selection, development, and evaluation remains challenging to do well.

 

Danish 'How are you?' survey provides a good sample for mental disorder research

October 19, 2022

Denmark, similar to several other countries, benefits from nationwide registers of routinely collected data. This includes information collected on the entire population during hospital visits and when buying prescription medication. While this data is all anonymized, it is possible to link all the data from each individual. This is hugely valuable for health researchers, like us. However, this routinely collected data does not provide good information on several factors relevant to health, for example smoking habits, alcohol intake, diet, or over-the-counter medication use. Surveys tend to be better at collecting this kind of data, and can be linked to the registers to add to the information available.

 

Research team links surveys with hospital data to improve the patient experience

October 13, 2022

If you have ever stayed in a hotel, accessed banking services, or dined at a restaurant, you have probably been asked to complete a survey about your experiences. Healthcare services are no different, and today, many hospitals and healthcare systems routinely conduct experience surveys. In doing so, they recognize the vital role that the feedback from patients and families plays in the planning and delivery of high-quality, patient-centered healthcare services.

 

Tidying up household survey data reveals missing same-sex households across the United States

October 12, 2022

A new study focusing on current methods of counting members of households in the United States has revealed that there are more same-sex couples across households than previously thought.

The research by Professor Peter Brandon and Oleg Ivashchenko from the University at Albany, New York, identifies two of the US government’s premier household surveys, the American Community Survey (ACS) and the Current Population Survey (CPS), as having inconsistencies in counting households which has led to inaccuracies and even conflicting results of the actual numbers of same-sex couples across households. As a result, the study has highlighted that same-sex couples are not yet being accurately represented in national household surveys.

 

Can we measure the quality of text data for research?

October 05, 2022

Researchers from the University of Manitoba, Canada have documented current research and practices about natural language processing (NLP) preprocessing methods, in an attempt to describe and potentially improve the quality of unstructured text data (UTD), including UTD found in electronic medical record (EMR) databases.

 

Record linkage with antenatal care clinics in western Kenya improves pregnancy data

September 29, 2022

A new data linkage study has revealed underreporting of stillbirths in a Health and Demographic Surveillance Systems (HDSS) in western Kenya, and substantial potential for downward bias in estimates of perinatal and neonatal mortality.

In a newly published article in the International Journal of Population Data Science (IJPDS), researchers leveraged record linkage with antenatal care (ANC) clinics to assess the quality and completeness of data collected on pregnancies and their outcomes in a HDSS in Siaya, Kenya. Their comparison with antenatal care clinic records of gestational age also indicated that miscarriages and stillbirths were likely subject to frequent misclassification in the HDSS.

 

New Dataset Made Available for Research: The ‘Children Looked After’ Census

August 02, 2022

The recent contribution of the ‘Children Looked After’ Census dataset to the Secure Anonymised Information (SAIL) Databank for research purposes, marks a significant step forward for children in Wales that come into contact with the care system.

These data will give approved researchers the opportunity to explore and understand in greater detail the journey of children through the care system and what happens to them when they leave. Using data linkage techniques, it will also be possible to gain a clearer picture of additional factors around children in care, by linking the new dataset with other data such as health, education and family justice.

 

Making Old Data New Again: Combining and re-using clinical data to examine sports injuries

July 26, 2022

Researchers have successfully demonstrated a way to identify sports and recreational injuries using existing routinely collected patient data.

The mountain of data collected from patient visits to a clinical provider, often called administrative data, can be a quick and affordable way to find out who is affected by certain health issues that occur after sports and recreational activities like basketball or rugby. Re-using the administrative data to conduct surveillance of health issues is a very important step to help keep people who participate in those activities out of the doctor’s office and on the pitch. Yet, turning administrative data into a form that gives us answers requires a lot of time, energy, and knowledge.

 

Critical care research to benefit from new data linkage method: INTEGRATE

July 18, 2022

A newly designed method, known as INTEGRATE, has been successfully used to demonstrate how anonymised critical care data from a number of data sources can be brought together to give an overview of a patient's journey before and after admission into an Intensive Care Unit (ICU).

The beauty of the INTEGRATE methodology, which is published in the International Journal of Population Data Science (IJPDS), is that it can be easily reproduced by any researcher with appropriate access to critical care data and interest in research into critical care pathways, making it a valuable asset for critical care research studies.

 

Researchers identify additional risk factors that help predict a child’s potential alcohol use.

July 7, 2022

In the first study of its kind using a large-scale data linkage, researchers have established a number of previously unknown factors that are likely to contribute to alcohol use in childhood. It is known that a child’s mental health, parental negligence and a dysfunctional family environment are some of the reasons why a child might turn to drink. But researchers have now revealed a more complex set of risk factors that could help professionals to identify children with alcohol related problems.

 

Children with CF in Wales may have worse educational achievements than the general population.

June 27, 2022

New insights into the educational achievements of 10 and 11 year olds in Wales with cystic fibrosis revealed that these children’s fare worse than the general population. As there is little known about the social consequences of living with cystic fibrosis, especially how it impacts a child’s education and whether they receive adequate support in schools, researchers conducted a population-scale data linkage study of all children born in Wales, the details of which have been published in the International Journal of Population Data Science (IJPDS).

 

Researchers ensure safety and effectiveness of medicines for the Australian public

June 9, 2022

While clinical trials are used to test how effective and safe medicines are in controlled settings enabling regulators and payers to decide upon which medicines to register and subsidise for the general public, in Australia, there have been crucial gaps in knowledge that give reliable evidence of how these medicines translate to the ‘real-world’ in terms of their use and effects, until now.

 

Study reveals the Winnipeg Boys & Girls Clubs help safeguard children from negative social outcomes.

June 9, 2022

A new study has revealed that the Winnipeg Boys & Girls Clubs are having a positive impact on the children who attend including better school engagement, lower risk of being charged with a crime, and lower risk of a teenage pregnancy. Members that use the Clubs most frequently are predominantly younger children aged 5 to 12, with some older children up to the age of 18 also taking advantage of the facilities, and many of the children come from low income families and face challenges in their home lives.

 

COVID-19 risk at mass gatherings successfully assessed using data linkage

June 6, 2022

Population Data Science methods have great potential for informing policy in relation to the risk of infectious disease at large scale events, as demonstrated in a new study published in the International Journal of Population Data Science (IJPDS).

In summer 2021, as rates of COVID-19 decreased and social restrictions were relaxed in Wales, live entertainment and sporting events were resumed. Researchers in Wales used data linkage methods to assess the potential increased risks of spreading COVID-19 at large events in order to inform policy on the safe re-introduction of spectator events.

 

Synthetic administrative data can support important research

May 23, 2022

Generating synthetic, or artificial versions of administrative data, could improve the efficiency of data analysis allowing research to be conducted more quickly. Synthetic data can be used for research and training purposes in place of the original data routinely collected during the administration of services such as the National Health Service or through education, employment, or the justice system, whilst still preserving the structure and some of the patterns in the original data, and protecting the privacy of individuals.

 

Making the most of fraud and computer misuse crime report data

May 11, 2022

Researchers and public authorities are increasingly exploring the potential of routinely collected administrative data to generate new insights. This includes recent work leveraging the opportunities of the crime report data collected by the UK’s national reporting centre, Action Fraud (AF). In fact, these data are a key resource for police officers and crime analysts and have a huge potential to inform local response, e.g. to help better understand victims’ needs, demands on police services and the experiences of repeat victims.

 

New data resource article to help researchers use Welsh Government children’s social care data

May 09, 2022

The Children in Need dataset and the Children Receiving Care and Support dataset are available to authorised researchers within the secure research platform at the Secure Anonymised Information Linkage (SAIL) Databank, based at Swansea University. These datasets include information relating to needs of children and young people and their social care support.

 

COVID-19 led to changes in community drug dispensing

April 28, 2022

The first study using the Welsh Dispensing DataSet available via SAIL Databank, has revealed how health services in Wales, such as community drug dispensing, changed throughout the COVID-19 pandemic. Analyses led by Fatemeh Torabi and Ashley Akbari identified substantial fluctuations in dispensing patterns that corresponded with the timing of the UK national lockdowns. Many people on repeat prescriptions were provided 2 or 3 months’ supply of medication , in order to ensure continuation of care, and the pandemic also interrupted routine immunisation pathways.

 

How can we make administrative data research-ready?

April 27, 2022

Administrative data are routinely collected during the day-to-day delivery of services, such as health, education, justice and social care. Because administrative data contain detailed information about all users of a service collected over many years, they are an extremely valuable resource for research.

 

The complexities of accessing linked data from multiple jurisdictions, simplified

April 27, 2022

A project conducted by the Population Health Research Network (PHRN) has resulted in the PHRN Online Application System (OAS). The new system simplifies the complex process of accessing data for research purposes from multiple jurisdictions across Australia.

 

Developing an interactive tool to support health system capacity planning during the COVID-19 pandemic

April 06, 2022

The COVID-19 pandemic revealed an urgent need for planning tools to help manage increased pressure on hospital systems. To help decision-makers better plan for the pandemic, the Canadian Institute for Health Information (CIHI) developed the COVID-19 Health System Capacity Planning Tool.

 

The Children’s Data Network (CDN): Connecting the Dots to Inform Children’s Programs and Policies

March 23, 2022

The Children’s Data Network, based in California, now holds the single largest dataset on children and youth in the United States. In order to support and develop upon investment into programs for children and youths experiencing adversities, this valuable and rich source of data offers researchers opportunities to more accurately assess root causes of children’s circumstances, and track their progression over time.

 

People are happy for researchers to use their digital footprint data – as long as certain conditions are met

March 16, 2022

Our ‘digital footprints’ are the tracks and traces we leave behind when we use the internet, digital devices such as fitness trackers, and online services. As these footprints provide insights into people’s behaviours, these data have huge potential to improve researchers’ abilities to discover greater levels of understanding about people and populations.

 

Do social circumstances affect your health? Canadian researchers can begin examining the complex connections between social assistance and health, for the first time

March 03, 2022

There has been a growing interest in examining the how the conditions of a person’s daily life such as access to health, educational attainment, financial stability, or the neighbourhood they live in can effect their health.

 

Valuable research into Fetal Alcohol Spectrum Disorder is no longer being lost in translation - with impactful and life changing results

March 02, 2022

Fetal Alcohol Spectrum Disorder (FASD) is the name given to a group of conditions in children who are exposed to alcohol in the womb. It is a complex and largely preventable public health issue in many countries around the world.

 

How ADRC NI helped protect population data research during the 2017 Northern Ireland Government collapse

February 03, 2022

Following the collapse of the devolved Northern Ireland Assembly in 2017, the Administrative Data Research Centre Northern Ireland (ADRC NI), responsible for facilitating access to government data for research for public benefit, had to quickly adapt and identify new ways to continue to positively influence policy and practice.

 

Developing the freely available CENTRIC training curriculum for UK researchers working with administrative data

February 02, 2022

CENTRIC is a new administrative data online training course launched in September 2020 by Cardiff University that specifically addresses commonly identified training needs of researchers working with administrative data. Aimed at researchers based in the UK, CENTRIC training is completely free of charge.

 

How do we navigate the sensitive and often misunderstood use of data on child abuse and neglect, for research purposes?

January 26, 2022

Nationally and internationally, there has been a growing recognition of the importance of identifying, documenting and reporting suspected and confirmed child maltreatment.

 

Turning research into policy: The Manitoba Centre for Health Policy (MCHP) reveals its formula to drive impact

January 25, 2022

The ability to inform policies, programs and service delivery with scientific evidence continues to benefit individuals, communities and our society as a whole, so it is important that researchers develop skills not only in sharing their results in ways that speak to targeted audiences, but also in fostering relationships with these knowledge users.

 

Regular use of Universal Health and Education Services decreases the chance of developmental issues in young children

January 19, 2022

The first 2,000 days of a child’s life is a critical window of opportunity for establishing a strong foundation for their futures, and the universal child health and early education services are regarded as one of the best investments that governments can make to support caregivers in providing for their children’s health, development and learning.

 

How administrative data and analytics were used to support Ontario’s COVID-19 pandemic response

January 18, 2022

Throughout the COVID-19 pandemic, data and analytics have been crucial to both understanding the virus’ impact on populations and health systems and informing the public health response. The unprecedented need for timely, relevant analytics presented challenges to many health systems.

 

Location-based sensors confirm that the public opted to ‘lockdown’ before policy interventions came into force

January 13, 2022

A new research study has confirmed that German citizens practiced self-imposed social distancing ahead of policy interventions during the COVID-19 pandemic. Using data from 100 sensors located across 49 metropolitan areas in Germany, researchers found that the numbers of pedestrians had fallen by 85% in 2020 compared with the previous, pre-pandemic year, before formal lockdowns were introduced by the Government.

 

Policymakers and researchers partner to inform new approach to reduce smoking in pregnancy

December 14, 2021

New research highlights the potential to reduce the rates of premature birth and stillbirth in New South Wales (NSW), Australia, using smoking cessation campaigns that outline the benefits of not smoking during pregnancy.

 

ASSIGN - an algorithm to help researchers study more precisely how health is impacted by where we live and who we live with

December 8, 2021

Knowing where a person lives and who they live with can provide important insights into the effects of the local environment and household composition on their health.

 

Administrative health data help to monitor the role of universal funding for assistive technologies for diabetes management in children.

December 7, 2021

In order to understand why some children experiencing complications of diabetes stay longer in hospital than others in New Brunswick, Canada, this study used anonymized data on the provincial insulin pump program, hospital records, and residential characteristics to characterize the social and policy factors that may result in shorter hospital overnight stays.

 

Coronavirus infection rates are lower amongst people experiencing homelessness in Wales than the general population

December 2, 2021

The Welsh Government’s rapid response to protect people experiencing homelessness from the spread of COVID-19 has resulted in lower rates of infection amongst this section of the population, compared with the general population in Wales, according to new research published today in the International Journal of Population Data Science (IJPDS).

 

How Data Harmonization provides a unique opportunity to accelerate health research

November 30, 2021

Data harmonization promising new way to support the advancement of research into population health to improve health and well-being of people worldwide, and provides unique opportunities for research.

 

Healthcare data linkage helps bridge the precarious transition gap from paediatric to adult services for young people with long term conditions

November 04, 2021

Up to the age of 16, children in the UK with long term health conditions receive ongoing healthcare, often by specialist paediatricians. But from age 16 onwards, the healthcare system views them as adults and transition to adult healthcare follows. This transition period is not only disruptive to the young people, but is also a source of concern about care standards that warranted inclusion in reports from the Care Quality Commission and the Chief Medical Officer for England.

 

Administrative health data help to monitor chronic diseases for the people of Alberta, Canada

October 21, 2021

In order to understand why and how some people develop cancer and chronic disease while others do not, Alberta’s Tomorrow Project in Alberta, Canada, invited Albertans that do not have prior history of cancer other than skin melanoma to participate in their long-term study by contributing information about their personal lifestyles and other risk factors for chronic diseases.

 

How can we measure the developmental impacts of the COVID-19 pandemic on young children?

October 7, 2021

Across the United States and around the world, children and families are starting a new school year. Typically, a time of excitement and new beginnings, the first day of school has again been overshadowed by the COVID-19 pandemic.

 

Researchers can measure health across multiple generations using routinely collected electronic records containing information on family structures and health

October 7, 2021

Having a family history of a health condition could increase your own risk of developing that health condition. Family health history is therefore an important tool for identifying people who have an increased risk of common, complex conditions.

 

How can access to administrative data for research be improved in Canada? This study aims to find out.

September 28, 2021

Administrative health data are a vital resource for researchers seeking to study the provision of healthcare. How healthcare is delivered, the quality of care provided, and the areas of care needing improvement, are essential pieces of information if healthcare is to be delivered to the highest standards. Why then is it still so challenging for some researchers to gain access to the data?

 

Not in Employment, Education or Training (NEET); more than a youth policy issue

September 21, 2021

Extending the age range of NEETs (people who are not in Employment, Education or Training) from the current 15-29 years to include all working ages from 15-64 years, will give social policy makers a better opportunity to deliver the right support and interventions to the right age groups.

 

Our understanding of complex relationships between health, education and social care of millions of children in England, is set to improve significantly.

September 16, 2021

A brand new database called ECHILD (Education and Child Health Insights from Linked Data) has been created that will significantly improve upon the depth and breadth of researcher’s understanding of how health, education and social care can impact the lives of millions of children across England.

 

A partnership between NHS England and NHS Improvement and The Health Foundation develops new algorithm to accurately identify the number of care home residents

September 15, 2021

The COVID-19 pandemic has been instrumental in highlighting how the lack of a national registry of care home residents in England has hampered efforts to adequately support this population subgroup. Meeting the needs of today’s ageing population with multiple health and healthcare needs is recognised to be among the most serious of challenges currently faced by the National Health Service (NHS) in England.

 

People working in the caring sector are at higher risk of poor mental health outcomes

July 27, 2021

Research suggests that healthcare professionals are more likely to be exposed to work-related stress from long working hours, night work or shift work and can often experience sleep disruption, potentially leading to burnout, depression, anxiety and sleep disorder, for up to 40% of healthcare staff. Research suggests that healthcare professionals are more likely to be exposed to work-related stress from long working hours, night work or shift work and can often experience sleep disruption, potentially leading to burnout, depression, anxiety and sleep disorder, for up to 40% of healthcare staff.

New standardised method for grouping patient records into ‘households’ will enable more effective research into the factors that shape our health

April 09, 2024

Data scientists at Queen Mary University of London have published a fast, standardised method to help health researchers group occupants of the same household at any point in time. The method uses Unique Property Reference Numbers (UPRNs) in pseudonymised health records to create household units of analysis. The availability of a transparent, robust method for doing this opens new possibilities for studying the wider determinants of health quickly and frequently.

 

University of Calgary's Centre for Health Informatics Leading the Way in Transforming Healthcare

March 21, 2024

The Centre for Health Informatics (CHI) at the University of Calgary is a leading academic unit in the field of health informatics. Through its innovative research, education programs, and collaborative partnerships, CHI is driving positive change in healthcare delivery and contributing to the advancement of the field globally.

 

Enhancing inclusion and societal participation in data governance in Brazil

March 13, 2024

The Centre for Data and Knowledge Integration for Health (CIDACS) was created to link socioeconomic and health data in an effort to investigate social determinants of health in Brazil. Our data governance practices conform with safe data linkage principles and guidelines to support data acquisition, management and use for public health research applications.

 

Sex, geographic location and socio-economic status could affect colorectal cancer outcomes

February 20, 2024

Researchers from the University of Edinburgh have been exploring mortality rates in patients diagnosed with colorectal cancer in Scotland. Using a dataset that includes everyone diagnosed with colorectal cancer between 2006 and 2018, they have found some surprising results in terms of which characteristics are associated with mortality, beyond the usual characteristics like tumour stage at diagnosis, age and level of disability.

 

To share or not to share? How local health systems in England can accelerate cross-sectoral data linkage to improve planning and decision-making.

February 07, 2024

A collaboration between researchers from Imperial College London and Kent County Council reveals challenges and barriers in sharing data for cross-sectoral linkage related to data infrastructure, data protection rules and lack of regular patient and public engagement.

 

Are children living in PFAS-contaminated towns experiencing poorer developmental outcomes?

February 05, 2024

A new study in Australia, published in the International Journal of Population Data Science (IJPDS), did not find enough evidence to link PFAS (per and poly fluoroalkyl substances) exposure to poorer child development. However, the health effects of PFAS continue to be an active area of research in Australia and internationally.

 

Unlocking Insights with VICHTA: Repurposing trial data to increase care home knowledge

January 15, 2024

Amidst global population aging, the demand for residential long-term care is increasing. In the United Kingdom, an estimated 430,000 older adults reside in care homes. Homes hold a wealth of information about each resident; however, this is often collected without a systematic approach, and shielded by commercial sensitivity and mistrust in data sharing. An efficient means for secondary research is to repurpose data collected from previous research undertaken in the homes.

 

How to examine the quality of linked survey and administrative data

January 09, 2024

With growing popularity of linking survey results to administrative records, a team at University College London (UCL) now provides guidance to evaluate the quality of such linked data. Their newly published methods empower researchers while protecting privacy.

Approved researchers increasingly analyse participant survey data connected to corresponding administrative datasets like hospital records. These linked data enable deeper insights. However, although the quality of the linkage can be assessed using different approaches, many of these approaches are not possible where there is a separation of processes for linkage and analysis to help preserve privacy.

 

Novel Scottish dataset on maltreated children now able to be linked with health data.

December 14, 2023

Scotland has created a new dataset that combines information on children who have experienced abuse or neglect. The Edinburgh Child Protection dataset comprises all children referred to child protection paediatric services in Edinburgh City over a 20 year period and offers an unprecedented opportunity for research on child maltreatment. This equates to around 27,000 referrals for c.16,000 children (as children could receive multiple referrals).

 

How can we be sure that machine learning models don’t inadvertently breach privacy?

December 14, 2023

Machine learning (ML) is a computing technique to find new insights into data. Increasingly these models are built using sensitive personal data, and so we need to be sure no individual data could be accidentally released when deploying these models. A consortium of universities, funded by DARE UK and led by the University of Dundee, developed mathematical tools to provide measures of disclosure risk and high-level guidelines for decision-makers. However, this has highlighted that there are many unresolved issues in this field, including how the results of such risk assessment should be interpreted.

 

Delving into the world of methods of de-identification for free-text data

December 12, 2023

If you are wondering which is the best way to go about de-identifying free text data, specifically free text data containing personal health information then you have found just the article to help you decide.

A review conducted by researchers from the Manitoba Centre for Health Policy at the University of Manitoba, Canada, has identified and categorised de-identification methods for free text data, how systems have evolved over time and highlights which hybrid approaches are the most promising for future research.

 

Artificially generated synthetic data help speed up research with health data from multiple jurisdictions

November 27, 2023

Exploration of the uses and accuracy of synthetic data abound within health research with the aim of improving data privacy and confidentiality. In a new Canadian study, synthetic data has again produced positive results during testing of a modified simulator that captures prescription drug records.

In the new study, ‘Generating synthetic data from administrative health records for drug safety and effectiveness studies’ published in the International Journal of Population Data Science (IJPDS), it was found that the attributes of the synthetic data generated by the modified simulator were similar to real-world administrative health record data, reflecting the modifications the team incorporated into the simulator.

 

Bridging the Gap to Unite Trusted Research Environments

November 09, 2023

Trusted Research Environments (TREs) are like safe havens for health data, ensuring that each one of us will be able to contribute anonymously to valuable research insights generated from day to day interactions with health care systems. TREs protect our information by offering both legal foundations and technology tools. But there's a catch: not all data is in one place, different data flows into different TREs. For example, if you move from Wales to England, there will most likely be an unknown gap in your electronic health records which is the data you contribute to research. This can be more critical in cases where people develop or suffer from a rare condition and are interested in getting timely insight into diagnosis or treatment for their conditions.

 

New collaborative method for producing combined synthetic datasets

October 31, 2023

Interest in Federated Learning, as a collaborative way to train AI or machine learning models without anyone else seeing or accessing your private data, has increased rapidly in recent years. The potential to use federated learning to allow multiple organisations to create combined synthetic datasets is explored by researchers from the University of Manchester. Creating these combined synthetic datasets could, for instance, allow multiple hospitals to work together to create one large synthetic patient dataset - potentially providing a more complete picture than each individual hospital dataset could alone, and produced without sharing any of their own private patient data.

 

How health data for research is governed in the Canadian province of Alberta with a centralised health system

October 26, 2023

If you have ever wondered how researchers access and manage health data in the province of Alberta – a single Canadian province with a centralised health system – a recent article published in the International Journal of Population Data Science (IJPDS) by a research team at the University of Calgary and University of Alberta is here to provide you with all the information on the well-established and streamlined processes that facilitate timely data access.

 

New database of 38 million older US adults aims to answer longstanding questions on COVID-19 vaccines

October 18, 2023

Over 58 million older adults globally have received at least one dose of a COVID-19 vaccine. COVID-19 vaccines, including boosters, are safe and effective overall. However, older adults, especially those with advanced dementia and other complex health conditions, are generally excluded from clinical trials and other studies of COVID-19 vaccines.

 

Accurate forecast modelling is an important tool for health care planning

October 16, 2023

Wait times for surgeries are a major barrier to health care and can have lasting impacts on patients including increased anxiety and pain, and worsened health status and recovery time. In Manitoba, Canada the health care system faces particularly high wait times for orthopedic and ophthalmological surgeries and investigations.

 

Unlocking the potential of data research through standardised access agreements

October 9, 2023

In the pursuit of more efficient and coordinated research for public benefit, the data research community is increasingly turning to Trusted Research Environments (TREs) – secure computing spaces that grant authorised researchers access to vital data. These environments operate under the umbrella of Data Access Agreements (DAAs), which establish the terms of data utilisation within these secure confines. However, such agreements are often unclear and complex, and this can lead to delays to research initiatives while the contract is reviewed.

 

Four Questions to Guide Decision-Making for Data Sharing and Integration

October 4, 2023

The Four Questions - Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)? should be considered within an established data governance framework and alongside core partners to determine whether and how to move forward when building an Integrated Data System (IDS) and also at each stage of a specific data project.

 

Novel Algorithm to Accurately Identify Bleeding in Electronic Health Records

October 2, 2023

Researchers from Bayer AG, Integrated Evidence Generation (IEG), have developed a novel algorithm to identify two widely used clinical trial definitions of bleeding events in electronic health records, allowing for the comparison of clinical trials and observational studies results.

 

Overcoming ethical and legal obstacles to data linkage in health research

September 25, 2023

In recent years, using, re-using, linking, sharing, and analysing health and genomic data has occurred on an unprecedented scale, and is expected to only keep expanding. Researchers can maximise the use of existing data collections effectively by using data linkage techniques. But, optimising the use of data poses challenges on ethical and legal levels, and raises questions and concerns regarding privacy and data protection.

 

How to know that your data are safe and being used for purposes that you agree with

September 20, 2023

As the volume and variety of data about people has increased, so too has the number of ideas about how those data might be used. Studies around the world have shown that many people want their data to be used for public benefit, but also that their support is conditional, and only given when risks like those related to privacy and commercial motives are addressed.

For organizations that are good and responsible stewards of data, the challenge can be finding ways to communicate their trustworthiness without providing an overwhelming amount of technical and legal details.

 

What are the driving factors behind children’s emergency department visits for mental health and substance use concerns?

August 14, 2023

Growing rates of visits to emergency departments for child mental health and substance use are occurring internationally, with reported increases ranging from 6-10% per year over the last decade. Yet, we lack the knowledge of the particular characteristics that distinguish between children presenting to emergency departments for mental health and substance use concerns and those who do not. This missing information is greatly needed to support evidence informed clinical and policy decision-making to improve children’s mental health and access to services.

 

Waterbirth research conducted by adapting local maternity information systems

August 7, 2023

The POOL study is a large UK based cohort study exploring the safety of waterbirth for mothers and babies. Although the use of water immersion during labour for pain relief is a popular choice and offered in most UK maternity units, clinical questions remain as to whether giving birth in water is as safe as leaving the water prior to birth. As the clinical outcomes of interest are uncommon a large study was required. To answer all study objectives, the POOL study plans to use records relating to over 800,000 births that occurred between January 2015 and June 2022.

 

How to involve under-represented communities in research

July 17, 2023

We all agree that getting members of the public involved in Population Data Science research is fundamental to successful outcomes, but just how can the research community encourage under-represented communities to get involved?

In a new study led by Piotr Teodorowski from the University of Liverpool and published in the International Journal of Population Data Science (IJPDS), members from the Polish and South Asian communities helped shape our understanding of the barriers to their involvement in large population data research activities.

 

New registry aims to improve care for newborns

June 20, 2023

In Canada, there is a lack of specific health data when it comes to ethnic communities. The country is rich in ethnic diversity, yet the lack of data from these communities leads to ethnicity-related inequalities in healthcare systems, which can be quite problematic.

The importance of understanding why this is the case and how best to assist and encourage people from ethnic communities to contribute to research using administrative health data, has led a research team from Calgary to engage with community members in an attempt to find a mutually agreeable way forward.

 

New registry aims to improve care for newborns

June 15, 2023

Globally, around 10% of newborns arrive either early (before 37 weeks gestation), or sick. This drives lifelong legacies of disability and developmental delay. Our ability to prevent this from happening and to provide better care are vital.

 

Stopping healthcare from falling behind in the digital age

June 13, 2023

As a very timely response to the European Commission’s communication on the importance of the European Health Data Space, authors from several EEA member states came together to discuss the pros and cons of record linkage as a vital key player for the COVID-19 syndemic. The result was a call for legal harmonization to overcome research challenges, and, to initiate discussions across the scientific community, they published a commentary in the International Journal of Population Data Science (IJPDS).

 

Stopping healthcare from falling behind in the digital age

June 12, 2023

Researchers at the National Centre for Healthy Ageing in Melbourne, Australia, are developing a unique research data platform called the Healthy Ageing Data Platform. It brings together data from routinely collected Electronic Health Records from across various healthcare sectors within a geographic region which is being used to enhance research and improve patient care.

 

Cross-sectoral data linkage can uncover and address health inequities among disadvantaged populations. What are the key challenges and opportunities to expanding its use?

June 7, 2023

The use of administrative health data for research, health monitoring, and quality improvement purposes has proliferated in recent decades. Administrative health data include records of contact with hospitals, emergency departments, primary care, pharmacies, psychiatric services, and more. These data provide a powerful basis to generate information on the health of populations, permitting a detailed understanding of health disparities, the resources required to improve them, and the consequences of inaction.

However, not all populations have equally benefitted from the use of these data to understand and improve health outcomes.

 

How Public Engagement gave a voice to the most vulnerable groups in Brazil during Covid-19

June 6, 2023

A research team from the Centre for Data and Knowledge Integration for Health (CIDACS) in Bahia, Brazil have created the Social Disparities Index for Covid-19 to measure and assess the effects of health inequalities of the most vulnerable people in Brazil during the Covid-19 pandemic. But fundamental to the success of the Index was a carefully planned programme of Public Engagement.

Vital to the project’s success was the inclusion of people from community groups who were working with black populations, favelas, black women, food insecurity, and human rights in particular – people directly affected by the deepening social inequality dynamics in the country. Policymakers, health sector managers, and members of the National Council of Health Secretaries (Conass) were also involved in order to stimulate ideas for improving IDS-Covid-19 information.

 

Viking Genes, a worldwide study of volunteers with ancestry from the Northern Isles of Scotland

May 16, 2023

The isolated populations of Orkney and Shetland are genetically distinct from mainland populations, with the highest degree of kinship and Norse blood in the British Isles and Ireland, and a unique cultural heritage. These populations are ideal for studying rarer genetic changes due to genetic drift, the large number of relatives, and availability of family tree information.

VIKING II is one of four studies in the Viking Genes project at the MRC Human Genetics Unit and the Usher Institute, University of Edinburgh. It is a global observational cohort of over 4,000 volunteers who share this distinct ancestry from the Northern Isles of Scotland. VIKING II was established with the aim of identifying genetic changes that influence risks of diseases such as heart disease, eye disease, stroke, cancer and others.

 

Associations between neighbourhood demographics and the effects of online learning in kindergarten

May 11, 2023

A team of researchers have conducted a thorough evaluation of the Family Nurse Partnership (FNP) program in England and Scotland, in an attempt to assess the many challenges of using routinely collected administrative data for evaluating policies and programmes.

Their evaluation has produced a number of important suggestions that that will be extremely useful to other researchers who are also attempting to navigate the challenges and biases that could otherwise compromise their findings.

 

Associations between neighbourhood demographics and the effects of online learning in kindergarten

April 04, 2023

During the first wave of the COVID-19 pandemic hundreds of schools across Canada closed their doors to students in favour of distance online learning. This generated a wave of research looking into the effects that home learning has had on children during this period. However, for the first time, researchers from the Offord Centre for Child Studies at McMaster University in Ontario have delved deep into the connections between the sociodemographics of children in particular school catchment areas in Ontario, barriers to distance learning, and concerns about the eventual return to the classroom as perceived by teachers, using data linkage techniques from two very different sources.

 

Global inequities of accessing assistive products for aging and disabled populations

March 16, 2023

A person’s access to assistive products such as hearing aids, wheelchairs, and glasses, is an essential part of their ability to age in a healthy way. But, according to the World Health Organization, a staggering 90% of people who need assistive products worldwide, do not have access to them. In many instances access is limited or simply non-existent. This is often due to assistive products being too expensive, demand outweighing supply, not always being suitable to use in different environments, or even the lack of availability of trained providers. In such circumstances, people are more likely to age ‘unhealthily’ if they do not have access to assistive products that are designed to support their day to day functioning and independence.

 

How local Trusted Research Environments can shape national data policies to streamline access to UK health data

March 16, 2023

The Ben Goldacre review, Better, Broader, Safer: Using Health Data for Research and Analysis, commissioned by the Secretary of State for Health and Social Care and published in April 2022, proposed a national data strategy to establish and codify large-scale or national Trusted Research Environments (TREs). Trusted Research Environments act as gatekeepers to researchers wanting to use routinely collected health data, allowing approved researchers to access, process, link and analyse health data, derived from NHS patient records, safely and securely.

 

Learning Health Systems help reduce inequities in healthcare

February 22, 2023

Throughout the COVID-19 pandemic, governments and healthcare institutions used rate of infection and death rates to help identify how best to tackle the pandemic and distribute services. But this approach was not entirely equitable, particularly amongst marginalised communities, and it shone a spotlight on healthcare disparities that already exist. Governments had no option but to confirm the fact that we need to find more equitable pandemic support services.

 

How Might New Data Help Uncover Pathways to Student Achievement in Ontario?

February 2, 2023

If you observe a kindergarten classroom, its games, songs, and stories might seem to be just for fun. But play-based learning can help children develop skills and knowledge before elementary school and provide an essential foundation for high school and beyond.

What if we could discover key features of early child development that correlate with strong learning pathways through high school? Educators could use that information to ensure all students, especially those who are struggling in school, are getting the supports they need, when they need them. Research tells us that the earlier we provide individualized supports to students, the more positive their effects.

 

Why misconceptions about population data can lead to bad outcomes

January 31, 2023

Data about people of whole populations are often seen as the new oil of the Big data age. They allow companies to recommend products tailored to you and help governments gain insight into their citizens’ needs. Such population data have also been highly valuable to better understand the spread and the effects of the COVID pandemic. There are, however, various misconceptions about population data that can lead to researchers making mistakes when processing, linking, and analysing such data, potentially resulting in poor real-world decisions.

 

Researchers in Kent, Surrey and Sussex consult with citizens about “unlocking health data”

January 30, 2023

In the South East England region of Kent, Surrey and Sussex (KSS), parts of the NHS are being joined together for the first time and are working on using NHS patient data to help understand the health needs of their populations. The NHS is also working closely with the county and city councils, which employ teams working in public health. These teams hope to use the joined-up NHS patient data to understand which local communities are at risk of poorer health, so they can design strategies to meet communities’ needs.

 

Unravelling hospital resource use of cancer patients

January 16, 2023

It is already known from recent research that hospital based end of life care of cancer patients is particularly resource intense with a steep cost-increase in the final three months of life. But how this breaks down was, until now, not clearly understood.

 

Encrypted medical data in research: A new privacy-preserving approach in data linkage

November 23, 2022

A new data linkage software shows the feasibility and accuracy of linking research databases without revealing any personal health information. The ‘Brain-CODE Link’ software was used to combine a large dataset of routinely collected information with a smaller dataset of primary collected data. This privacy-preserving record linkage comprised the largest data linkage performed with the Brain-CODE Link software to date.

 

Research Shows How People Experiencing Overdose Engage With Healthcare Services in Canada

October 26, 2022

Overdoses related to illicit opioids and other substances are a significant public health crisis in Canada. In order to design effective public health interventions and reduce barriers to care, it is important to understand how people who experience overdose connect with the healthcare system. New research has examined how people who experience overdose in one province in Canada access a range of healthcare services, including ambulance services, emergency departments, and hospitals, with details published in the International Journal of Population Data Science (IJPDS).

 

How epidemiology and AI can help with planning and selecting decision support tools

October 19, 2022

Researchers from Western University, Canada have demonstrated the value of using artificial intelligence (AI) methods for descriptive epidemiology when developing data-driven decision support tools in health care.

Data-driven decision support tools are technology that provide information to help people make decisions. These tools use data from various sources to identify gaps, patterns or trends, or to make prediction of future events. Although becoming increasingly common within health care, their selection, development, and evaluation remains challenging to do well.

 

Danish 'How are you?' survey provides a good sample for mental disorder research

October 19, 2022

Denmark, similar to several other countries, benefits from nationwide registers of routinely collected data. This includes information collected on the entire population during hospital visits and when buying prescription medication. While this data is all anonymized, it is possible to link all the data from each individual. This is hugely valuable for health researchers, like us. However, this routinely collected data does not provide good information on several factors relevant to health, for example smoking habits, alcohol intake, diet, or over-the-counter medication use. Surveys tend to be better at collecting this kind of data, and can be linked to the registers to add to the information available.

 

Research team links surveys with hospital data to improve the patient experience

October 13, 2022

If you have ever stayed in a hotel, accessed banking services, or dined at a restaurant, you have probably been asked to complete a survey about your experiences. Healthcare services are no different, and today, many hospitals and healthcare systems routinely conduct experience surveys. In doing so, they recognize the vital role that the feedback from patients and families plays in the planning and delivery of high-quality, patient-centered healthcare services.

 

Tidying up household survey data reveals missing same-sex households across the United States

October 12, 2022

A new study focusing on current methods of counting members of households in the United States has revealed that there are more same-sex couples across households than previously thought.

The research by Professor Peter Brandon and Oleg Ivashchenko from the University at Albany, New York, identifies two of the US government’s premier household surveys, the American Community Survey (ACS) and the Current Population Survey (CPS), as having inconsistencies in counting households which has led to inaccuracies and even conflicting results of the actual numbers of same-sex couples across households. As a result, the study has highlighted that same-sex couples are not yet being accurately represented in national household surveys.

 

Can we measure the quality of text data for research?

October 05, 2022

Researchers from the University of Manitoba, Canada have documented current research and practices about natural language processing (NLP) preprocessing methods, in an attempt to describe and potentially improve the quality of unstructured text data (UTD), including UTD found in electronic medical record (EMR) databases.

 

Record linkage with antenatal care clinics in western Kenya improves pregnancy data

September 29, 2022

A new data linkage study has revealed underreporting of stillbirths in a Health and Demographic Surveillance Systems (HDSS) in western Kenya, and substantial potential for downward bias in estimates of perinatal and neonatal mortality.

In a newly published article in the International Journal of Population Data Science (IJPDS), researchers leveraged record linkage with antenatal care (ANC) clinics to assess the quality and completeness of data collected on pregnancies and their outcomes in a HDSS in Siaya, Kenya. Their comparison with antenatal care clinic records of gestational age also indicated that miscarriages and stillbirths were likely subject to frequent misclassification in the HDSS.

 

New Dataset Made Available for Research: The ‘Children Looked After’ Census

August 02, 2022

The recent contribution of the ‘Children Looked After’ Census dataset to the Secure Anonymised Information (SAIL) Databank for research purposes, marks a significant step forward for children in Wales that come into contact with the care system.

These data will give approved researchers the opportunity to explore and understand in greater detail the journey of children through the care system and what happens to them when they leave. Using data linkage techniques, it will also be possible to gain a clearer picture of additional factors around children in care, by linking the new dataset with other data such as health, education and family justice.

 

Making Old Data New Again: Combining and re-using clinical data to examine sports injuries

July 26, 2022

Researchers have successfully demonstrated a way to identify sports and recreational injuries using existing routinely collected patient data.

The mountain of data collected from patient visits to a clinical provider, often called administrative data, can be a quick and affordable way to find out who is affected by certain health issues that occur after sports and recreational activities like basketball or rugby. Re-using the administrative data to conduct surveillance of health issues is a very important step to help keep people who participate in those activities out of the doctor’s office and on the pitch. Yet, turning administrative data into a form that gives us answers requires a lot of time, energy, and knowledge.

 

Critical care research to benefit from new data linkage method: INTEGRATE

July 18, 2022

A newly designed method, known as INTEGRATE, has been successfully used to demonstrate how anonymised critical care data from a number of data sources can be brought together to give an overview of a patient's journey before and after admission into an Intensive Care Unit (ICU).

The beauty of the INTEGRATE methodology, which is published in the International Journal of Population Data Science (IJPDS), is that it can be easily reproduced by any researcher with appropriate access to critical care data and interest in research into critical care pathways, making it a valuable asset for critical care research studies.

 

Researchers identify additional risk factors that help predict a child’s potential alcohol use.

July 7, 2022

In the first study of its kind using a large-scale data linkage, researchers have established a number of previously unknown factors that are likely to contribute to alcohol use in childhood. It is known that a child’s mental health, parental negligence and a dysfunctional family environment are some of the reasons why a child might turn to drink. But researchers have now revealed a more complex set of risk factors that could help professionals to identify children with alcohol related problems.

 

Children with CF in Wales may have worse educational achievements than the general population.

June 27, 2022

New insights into the educational achievements of 10 and 11 year olds in Wales with cystic fibrosis revealed that these children’s fare worse than the general population. As there is little known about the social consequences of living with cystic fibrosis, especially how it impacts a child’s education and whether they receive adequate support in schools, researchers conducted a population-scale data linkage study of all children born in Wales, the details of which have been published in the International Journal of Population Data Science (IJPDS).

 

Researchers ensure safety and effectiveness of medicines for the Australian public

June 9, 2022

While clinical trials are used to test how effective and safe medicines are in controlled settings enabling regulators and payers to decide upon which medicines to register and subsidise for the general public, in Australia, there have been crucial gaps in knowledge that give reliable evidence of how these medicines translate to the ‘real-world’ in terms of their use and effects, until now.

 

Study reveals the Winnipeg Boys & Girls Clubs help safeguard children from negative social outcomes.

June 9, 2022

A new study has revealed that the Winnipeg Boys & Girls Clubs are having a positive impact on the children who attend including better school engagement, lower risk of being charged with a crime, and lower risk of a teenage pregnancy. Members that use the Clubs most frequently are predominantly younger children aged 5 to 12, with some older children up to the age of 18 also taking advantage of the facilities, and many of the children come from low income families and face challenges in their home lives.

 

COVID-19 risk at mass gatherings successfully assessed using data linkage

June 6, 2022

Population Data Science methods have great potential for informing policy in relation to the risk of infectious disease at large scale events, as demonstrated in a new study published in the International Journal of Population Data Science (IJPDS).

In summer 2021, as rates of COVID-19 decreased and social restrictions were relaxed in Wales, live entertainment and sporting events were resumed. Researchers in Wales used data linkage methods to assess the potential increased risks of spreading COVID-19 at large events in order to inform policy on the safe re-introduction of spectator events.

 

Synthetic administrative data can support important research

May 23, 2022

Generating synthetic, or artificial versions of administrative data, could improve the efficiency of data analysis allowing research to be conducted more quickly. Synthetic data can be used for research and training purposes in place of the original data routinely collected during the administration of services such as the National Health Service or through education, employment, or the justice system, whilst still preserving the structure and some of the patterns in the original data, and protecting the privacy of individuals.

 

Making the most of fraud and computer misuse crime report data

May 11, 2022

Researchers and public authorities are increasingly exploring the potential of routinely collected administrative data to generate new insights. This includes recent work leveraging the opportunities of the crime report data collected by the UK’s national reporting centre, Action Fraud (AF). In fact, these data are a key resource for police officers and crime analysts and have a huge potential to inform local response, e.g. to help better understand victims’ needs, demands on police services and the experiences of repeat victims.

 

New data resource article to help researchers use Welsh Government children’s social care data

May 09, 2022

The Children in Need dataset and the Children Receiving Care and Support dataset are available to authorised researchers within the secure research platform at the Secure Anonymised Information Linkage (SAIL) Databank, based at Swansea University. These datasets include information relating to needs of children and young people and their social care support.

 

COVID-19 led to changes in community drug dispensing

April 28, 2022

The first study using the Welsh Dispensing DataSet available via SAIL Databank, has revealed how health services in Wales, such as community drug dispensing, changed throughout the COVID-19 pandemic. Analyses led by Fatemeh Torabi and Ashley Akbari identified substantial fluctuations in dispensing patterns that corresponded with the timing of the UK national lockdowns. Many people on repeat prescriptions were provided 2 or 3 months’ supply of medication , in order to ensure continuation of care, and the pandemic also interrupted routine immunisation pathways.

 

How can we make administrative data research-ready?

April 27, 2022

Administrative data are routinely collected during the day-to-day delivery of services, such as health, education, justice and social care. Because administrative data contain detailed information about all users of a service collected over many years, they are an extremely valuable resource for research.

 

The complexities of accessing linked data from multiple jurisdictions, simplified

April 27, 2022

A project conducted by the Population Health Research Network (PHRN) has resulted in the PHRN Online Application System (OAS). The new system simplifies the complex process of accessing data for research purposes from multiple jurisdictions across Australia.

 

Developing an interactive tool to support health system capacity planning during the COVID-19 pandemic

April 06, 2022

The COVID-19 pandemic revealed an urgent need for planning tools to help manage increased pressure on hospital systems. To help decision-makers better plan for the pandemic, the Canadian Institute for Health Information (CIHI) developed the COVID-19 Health System Capacity Planning Tool.

 

The Children’s Data Network (CDN): Connecting the Dots to Inform Children’s Programs and Policies

March 23, 2022

The Children’s Data Network, based in California, now holds the single largest dataset on children and youth in the United States. In order to support and develop upon investment into programs for children and youths experiencing adversities, this valuable and rich source of data offers researchers opportunities to more accurately assess root causes of children’s circumstances, and track their progression over time.

 

People are happy for researchers to use their digital footprint data – as long as certain conditions are met

March 16, 2022

Our ‘digital footprints’ are the tracks and traces we leave behind when we use the internet, digital devices such as fitness trackers, and online services. As these footprints provide insights into people’s behaviours, these data have huge potential to improve researchers’ abilities to discover greater levels of understanding about people and populations.

 

Do social circumstances affect your health? Canadian researchers can begin examining the complex connections between social assistance and health, for the first time

March 03, 2022

There has been a growing interest in examining the how the conditions of a person’s daily life such as access to health, educational attainment, financial stability, or the neighbourhood they live in can effect their health.

 

Valuable research into Fetal Alcohol Spectrum Disorder is no longer being lost in translation - with impactful and life changing results

March 02, 2022

Fetal Alcohol Spectrum Disorder (FASD) is the name given to a group of conditions in children who are exposed to alcohol in the womb. It is a complex and largely preventable public health issue in many countries around the world.

 

How ADRC NI helped protect population data research during the 2017 Northern Ireland Government collapse

February 03, 2022

Following the collapse of the devolved Northern Ireland Assembly in 2017, the Administrative Data Research Centre Northern Ireland (ADRC NI), responsible for facilitating access to government data for research for public benefit, had to quickly adapt and identify new ways to continue to positively influence policy and practice.

 

Developing the freely available CENTRIC training curriculum for UK researchers working with administrative data

February 02, 2022

CENTRIC is a new administrative data online training course launched in September 2020 by Cardiff University that specifically addresses commonly identified training needs of researchers working with administrative data. Aimed at researchers based in the UK, CENTRIC training is completely free of charge.

 

How do we navigate the sensitive and often misunderstood use of data on child abuse and neglect, for research purposes?

January 26, 2022

Nationally and internationally, there has been a growing recognition of the importance of identifying, documenting and reporting suspected and confirmed child maltreatment.

 

Turning research into policy: The Manitoba Centre for Health Policy (MCHP) reveals its formula to drive impact

January 25, 2022

The ability to inform policies, programs and service delivery with scientific evidence continues to benefit individuals, communities and our society as a whole, so it is important that researchers develop skills not only in sharing their results in ways that speak to targeted audiences, but also in fostering relationships with these knowledge users.

 

Regular use of Universal Health and Education Services decreases the chance of developmental issues in young children

January 19, 2022

The first 2,000 days of a child’s life is a critical window of opportunity for establishing a strong foundation for their futures, and the universal child health and early education services are regarded as one of the best investments that governments can make to support caregivers in providing for their children’s health, development and learning.

 

How administrative data and analytics were used to support Ontario’s COVID-19 pandemic response

January 18, 2022

Throughout the COVID-19 pandemic, data and analytics have been crucial to both understanding the virus’ impact on populations and health systems and informing the public health response. The unprecedented need for timely, relevant analytics presented challenges to many health systems.

 

Location-based sensors confirm that the public opted to ‘lockdown’ before policy interventions came into force

January 13, 2022

A new research study has confirmed that German citizens practiced self-imposed social distancing ahead of policy interventions during the COVID-19 pandemic. Using data from 100 sensors located across 49 metropolitan areas in Germany, researchers found that the numbers of pedestrians had fallen by 85% in 2020 compared with the previous, pre-pandemic year, before formal lockdowns were introduced by the Government.

 

Policymakers and researchers partner to inform new approach to reduce smoking in pregnancy

December 14, 2021

New research highlights the potential to reduce the rates of premature birth and stillbirth in New South Wales (NSW), Australia, using smoking cessation campaigns that outline the benefits of not smoking during pregnancy.

 

ASSIGN - an algorithm to help researchers study more precisely how health is impacted by where we live and who we live with

December 8, 2021

Knowing where a person lives and who they live with can provide important insights into the effects of the local environment and household composition on their health.

 

Administrative health data help to monitor the role of universal funding for assistive technologies for diabetes management in children.

December 7, 2021

In order to understand why some children experiencing complications of diabetes stay longer in hospital than others in New Brunswick, Canada, this study used anonymized data on the provincial insulin pump program, hospital records, and residential characteristics to characterize the social and policy factors that may result in shorter hospital overnight stays.

 

Coronavirus infection rates are lower amongst people experiencing homelessness in Wales than the general population

December 2, 2021

The Welsh Government’s rapid response to protect people experiencing homelessness from the spread of COVID-19 has resulted in lower rates of infection amongst this section of the population, compared with the general population in Wales, according to new research published today in the International Journal of Population Data Science (IJPDS).

 

How Data Harmonization provides a unique opportunity to accelerate health research

November 30, 2021

Data harmonization promising new way to support the advancement of research into population health to improve health and well-being of people worldwide, and provides unique opportunities for research.

 

Healthcare data linkage helps bridge the precarious transition gap from paediatric to adult services for young people with long term conditions

November 04, 2021

Up to the age of 16, children in the UK with long term health conditions receive ongoing healthcare, often by specialist paediatricians. But from age 16 onwards, the healthcare system views them as adults and transition to adult healthcare follows. This transition period is not only disruptive to the young people, but is also a source of concern about care standards that warranted inclusion in reports from the Care Quality Commission and the Chief Medical Officer for England.

 

Administrative health data help to monitor chronic diseases for the people of Alberta, Canada

October 21, 2021

In order to understand why and how some people develop cancer and chronic disease while others do not, Alberta’s Tomorrow Project in Alberta, Canada, invited Albertans that do not have prior history of cancer other than skin melanoma to participate in their long-term study by contributing information about their personal lifestyles and other risk factors for chronic diseases.

 

How can we measure the developmental impacts of the COVID-19 pandemic on young children?

October 7, 2021

Across the United States and around the world, children and families are starting a new school year. Typically, a time of excitement and new beginnings, the first day of school has again been overshadowed by the COVID-19 pandemic.

 

Researchers can measure health across multiple generations using routinely collected electronic records containing information on family structures and health

October 7, 2021

Having a family history of a health condition could increase your own risk of developing that health condition. Family health history is therefore an important tool for identifying people who have an increased risk of common, complex conditions.

 

How can access to administrative data for research be improved in Canada? This study aims to find out.

September 28, 2021

Administrative health data are a vital resource for researchers seeking to study the provision of healthcare. How healthcare is delivered, the quality of care provided, and the areas of care needing improvement, are essential pieces of information if healthcare is to be delivered to the highest standards. Why then is it still so challenging for some researchers to gain access to the data?

 

Not in Employment, Education or Training (NEET); more than a youth policy issue

September 21, 2021

Extending the age range of NEETs (people who are not in Employment, Education or Training) from the current 15-29 years to include all working ages from 15-64 years, will give social policy makers a better opportunity to deliver the right support and interventions to the right age groups.

 

Our understanding of complex relationships between health, education and social care of millions of children in England, is set to improve significantly.

September 16, 2021

A brand new database called ECHILD (Education and Child Health Insights from Linked Data) has been created that will significantly improve upon the depth and breadth of researcher’s understanding of how health, education and social care can impact the lives of millions of children across England.

 

A partnership between NHS England and NHS Improvement and The Health Foundation develops new algorithm to accurately identify the number of care home residents

September 15, 2021

The COVID-19 pandemic has been instrumental in highlighting how the lack of a national registry of care home residents in England has hampered efforts to adequately support this population subgroup. Meeting the needs of today’s ageing population with multiple health and healthcare needs is recognised to be among the most serious of challenges currently faced by the National Health Service (NHS) in England.

 

People working in the caring sector are at higher risk of poor mental health outcomes

July 27, 2021

Research suggests that healthcare professionals are more likely to be exposed to work-related stress from long working hours, night work or shift work and can often experience sleep disruption, potentially leading to burnout, depression, anxiety and sleep disorder, for up to 40% of healthcare staff. Research suggests that healthcare professionals are more likely to be exposed to work-related stress from long working hours, night work or shift work and can often experience sleep disruption, potentially leading to burnout, depression, anxiety and sleep disorder, for up to 40% of healthcare staff.