News
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.